Story Index
9 p.m.
I unplug the Christmas tree lights as I head up the stairs to enjoy a warm shower and perhaps a few minutes to read my book. Sleep will come easily tonight as it does most nights. Exhausted I pass out. Nicholas, my sleepless child, finally dozes off after six books, two glasses of water, a half-hour of cuddle time and assurances that there are no monsters in the closet or under the bed.
Midnight
The howling wind lashes the rain against our bedroom window. The sound awakens me, and I wonder if we will soon lose power, a frequent winter occurrence when living in the woods. The silence from a power failure is deafening, and the loss of electricity will stop the gentle hum of the refrigerator that soothes my son. I stumble to the bathroom trying not to wake my husband, Joe. I feel an ache creep into my muscles. Sleep only comes again when I concentrate on the rhythmic sound of the rain.
2 a.m.
I am not sure which came first, the sound of Joe snoring or the realization that the rain had stopped. I shake my husband, his snoring stutters then he inhales deeply and rolls over. Again I make the pilgrimage to the bathroom and silently thank the gods for stopping the wind. As I lay in bed, I begin to worry about my older son. His grades are not as good as they should be. He’s not applying himself. Do I nag more? Do I let him suffer his own consequences? Do I allow his charming personality to carry him through life without effort? Or do I show him that hard work has its own rewards? Did I pay the credit card bill on time? Is there enough money in that account to cover the check? Is the roof leaking again? What will that cost?
3 a.m.
“Mommy, can we get up now?” I hear Nicholas call from the bottom of the stairs. “No, it’s time for sleep.” I scoop up my son and carry him back to bed. “Will you lay down with me?” “For three minutes,” I tell Nicholas, not wanting him to depend on me for his middle of the night comfort. I watch as three minutes pass on the clock. Then I kiss him on the forehead and trudge back up the stairs.
5 a.m.
My aching body awakes me. This time I won’t force myself back to sleep. Instead, I tiptoe downstairs. Resigned to this early start of another day, I steep a cup of tea and head for the computer. As the other members of my household continue to sleep, I plug in the Christmas tree lights and begin writing my morning thoughts.
A Short Story Starring Nicholas and His Mom, Sarah
“Mommy, you are not going to buy the pink coat are you?” 10-year-old Nicholas asks, swallowing hard.
“Why, yes, I thought I would. With all the boy energy in our house, I’d like to add a little pink to my life” Sarah tells him. Nicholas begins to tremble, unable to catch his breath. “You can’t do that! You have to get the black one. You always wear black. Not pink.”
“It’s okay, honey. It’s just a coat.”
“But you just can’t. You can’t.” Nicholas runs out of the store sobbing. Sarah finds her son huddled in a puddle of tears. Still shaking, he repeats his plea, “Mommy, please don’t buy the pink coat.” Sarah feels her sense of choice and spontaneity fade right there on the crowded city sidewalk. .
Half an hour later, however, Sarah buys the coat she wants—the pink one. But as she eyes Nicholas, still crying on the way home, Sarah begins second-guessing herself. Did she make the right decision? She understands that Nicholas has an anxiety disorder and needs to live in a predictable world. Unexpected change drives him, like a ride on the Thunderbolt, from calm to chaos in seconds flat. “Thank goodness my mothers’ group meets this week,” she mutters, with an audible sigh.
Back home, and for the next three days, Nicholas and Sarah ride out his depression. On the second day, feeling annoyed and a little guilty about his unhappiness, Sarah tells the story of the pink coat to her mothers’ support group. Here she experiences the wisdom of mothers with equally difficult kids. These mothers appreciate her pleasure at buying what she wanted and the pain of knowing how deeply it upset her son. They help Sarah realize once again that Nicholas’s anxiety issues cannot drive all the decisions in her life. As usual, the group affords her the time and opportunity to vent her frustration, de-fog her vision, and better grasp what she can and cannot control in her life.
BITE YOUR TONGUE -- PLEASE! by Laura Minion
Taking kids with autism into public places isn't exactly a fun or uplifting experience most of the time. People always seem to come through with stares, comments, or gestures that make me wish I could live in a secluded area and never venture out.
In general, I like people. I love talking to people, hearing different perspectives and experiences, and just interacting. However, I don't like being made a spectacle of or receiving self-righteous anecdotes about how "if that were my child...".
Sometimes I feel energetic, optimistic, and full of life. On these days I can let even kind of nasty comments roll off me. Other days, I feel like I'm on the edge, and all it will take to push me over is a mean look, a thoughtless comment, or a depressing thought. These are the days I generally don't take my daughters anywhere, simply because I don't want to deal with the stress of a trip outside of the house.
Really, it is usually the small things that make my kids happy: car rides, snacks, water, TV, etc. Still, on some days it gets to be a bit much. A kind gesture or comment can help turn around a crappy day, while a crappy comment or gesture can ruin an otherwise good day.
I'm not going for sympathy; rather, I am sharing how by just being a little more open-minded or tolerant you can really impact another person's life for the better.
The other day I took Celest to run some errands with me after I picked her up from school. I figured since I just had her that it would be relatively easy to do this since she is more likely to walk in and out of buildings without lying down on the sidewalk.
Anyway, we went inside, returned some items, and then I went to check my account to make sure I didn't have any overdue items or fees. There is a copy machine next to the computer I went to use, and there was a lady making copies. Before I could stop her, Celest reached out and hit the big, green start button. I apologized and we sat down at the computer next to the copier. The lady continued to look at us, so I met and held her gaze. She kind of grumbled, "Isn't she a little old for that?" Automatically she implied that my child was a brat, I was an inadequate parent, and shouldn't I be ashamed of myself for allowing this to be? I realize that her response might not have implied that level of harshness, but that is how I interpreted it that day.
I smiled at her, and said, "She has autism and is mentally retarded. Whenever she sees a button she wants to push it. I'm sorry."
Her expression softened, and she said, "That's okay. No harm done."
I'm glad that she was okay with things, even though I don't feel like I should have to explain myself. I'm really glad that I didn't start crying my eyes out at her comment, because I had been having sporadic crying fits for the preceding week. That would have been a bit awkward for both of us.
Anyway, I wish that people would just bite their tongues when it comes to parenting. Sure, you can rant to your family or friends to vent about something that happened or someone's kids, but do you really need to criticize someone's child and parenting skills if no one is in danger?
I try not to let things like this get me down, but the stress of parenting children with special needs wears my patience and attitude thin sometimes. If you see a frazzled mom with a "bratty" kid, just don't say anything at all unless you are going to offer her help (if she appears to need it). You never know, it could be me, and you'll see me writing about it... When in doubt, just be nice!
Read more from Laura on her website Autism All Around.
Am I Giving Enough? By Robin Dowdy
Am I giving enough?
Am I doing enough?
Am I being a good enough mother?
These questions plague the serenity of all mothers at one time or another. They hit me when I leave my crying kids and go to work or take time for myself. They assault me when I yell at my kids in anger or when my kids are throwing the tenth or twentieth tantrum of the day over yet another minor detail and I am less than supportive.
While these nagging questions serve many purposes, one of the most important is the chance for me to step back and reflect on how I am being and to reaffirm that, yes, I am giving, doing, and being a good enough mother.
The moments when I feel like I have let my kids down will happen over and over in my life as a mother and there will be many times when, “no” is the answer to the questions above. No, I am not giving, doing, or being enough because I am completely spent. And even in those cases, the answer is still, “yes” because first and foremost, I, and all mothers, am human. We will fail our children again and again. My own faults range from unbearable to minor and they will affect my children’s lives. And, rather than being cause for despair or resignation, this fact is actually a cause for celebrating the love and connection that my faults invite me to embrace.
More important than what my faults are as a mother, is how I handle the situations that arise when they impact my kids. Each instance offers the opportunity for demonstration of what it means to extend and be love in the moments when I am most vulnerable to my own humanity. Admitting my own wrongdoing and asking forgiveness of my children teaches grace and humility. Changing my behavior over time and being transparent about that process builds trust and intimacy. Stopping in the midst of an angry tirade and taking a breath and gathering all in for hugs demonstrates that emotions are transient and though powerful, are not to be feared. Relating to my children’s mistakes and emotional ups and downs with empathy and loving boundaries rather than having to fix them to make my kids look good, teaches them acceptance and trust.
Though it feels awful to let my kids down in any way and I strive to do as little harm as possible, I am regularly reminded that through my being imperfect, I am allowing them to learn how to be with and move through their own imperfections and to know that love is present no matter what. Isn’t that better than having to be perfect and what we all want anyway?
Robin Dowdy is parent, educator, business owner and coach. Owner of Shine Through Coaching in Seattle. You can reach her at: 425.941.0819 or email Robin at robin.dowdy@gmail.com
BE QUIET AND LISTEN by Corbin Lewars
I realize now that I was fooling myself all along. I said I wanted to support my local school, while conveniently forgetting how public schools are actually run. I told myself my highly sensitive son would be happy in this school with three hundred and fifty other kids because he loved school. I told myself it would be great, we’ll be just like everyone else. But we’re not like everyone else.
Within the first week of Kindergarten Conor started having nightmares. Every morning I dropped off a happy, chatty boy, but when I picked him up in the afternoon he was sullen and uncommunicative. Before we even reached our house, he would burst into tears. “My scooter fell!” “Stella’s not listening to me!” Once we were home, he would crawl up on to the couch, surround himself with pillows, and read for over an hour. I’m used to Conor’s emotional swings, but crying every day and retreating into himself? This was not my son.
I was sure it was due to the transition from his quiet, peaceful preschool class of twelve kids, where he had been for three years, to the unknown world of Kindergarten. I told myself to give it some time and not over react. Every day when I or someone else asked him about school, he would smile and claim he liked it. And I really wanted to believe him.
But as September came to an end and the crying jags didn’t subside, I started asking more questions. “What did you like about today?” What was your least favorite thing that happened today?” Through questions like these, I was able to elicit more details. Noisy assemblies and lunch rooms, the teacher scolding other children, constantly being told what to do rather than being able to be self-directive, teachers, parents, and guest teachers coming and going throughout the day, general recess mayhem, being told rules, memorizing those rules, and then witnessing kids not following these rules, competitive PE, bells and loudspeakers, all of these things weighed heavily on Conor. He was falling dead asleep at seven o’clock at night and wouldn’t get up until seven thirty in the morning, yet he looked exhausted. His head drooped, he had dark circles under his eyes, and his emotions were raw. Yet, he was still claiming he liked school and appeared eager to go in the morning.
I furthered my probing and one day as we were walking home I challenged his statement. “You say you had a good day, but you’re body is telling me something different. What’s going on?”
He kicked some rocks, shuffled his feet, and then said, “Every day I think I’m going to have a good day and I’m excited to see my friends, but then I get there and I don’t feel that way. And by the time you get me, I don’t feel good at all.”
I knew I couldn’t all of the stressors for Conor while he was in school, but I could have him be there less. I asked his teachers and the principal if I could pick him up early one or two days a week.
“No one goes half day in our class,” they claimed “And he’s clearly ready for school. He’s working a grade or two ahead and listens and follows directions.”
“I know,” I interrupted, “but he’s a mess when he gets home.”
Although I hoped otherwise, the short days didn’t seem to help. His teachers claimed he had already mastered their entire curriculum and were concerned he would get bored, but Conor claimed school was hard. And it was hard. Filtering all of the noise, trying to predict what was going to happen every day, and worrying about his friends getting in trouble was exhausting for him. Whereas most kids can shrug off or don’t even notice some things, Conor notices and remembers everything. After digesting all of the goings on is his class, even a simple coloring exercise seemed difficult.
I started to research other schools, but didn’t mention it to Conor. He had formed many friendships and I thought the idea of starting all over would only cause him more stress.
One day in October he told me how much he liked being at home. Especially when he was curled up in his “nest” and reading. “My body feels good all over and I’m so happy.”
“Good,” I said. “I’m glad you feel that way. Do you ever feel that way at school?”
“Never,” he said without pause.
“Never? Really” I asked.
“Never.”
I decided to test the waters and see what he thought about looking at another school. Before I even had the words out, he said, “Yes! Today?”
“Really? You’d want to do that? But what about all of your friends?”
“I’ll still see them. When can I go to a new school?”
I scheduled three tours for myself, but after the first visit, I canceled the others. Even while waiting in the lobby, I knew this was the school for Conor. All of the classroom doors were open, yet there was tranquility in the air. All I heard was the sound of children working together. No bells, no demands for “all of you put your head down,” no chaos, just children learning. I started to cry with relief. Thank god there is a place for my son.
We were extremely fortunate in that a space was opening up due to a family moving. And once the director and teacher heard our stories, they let us enroll Conor right away. Everything was set and I felt so lucky, but then I started to doubt myself. Am I being overprotective? Should I have given the public school more of a chance? Should Conor learn how to not let things affect him so much? Maybe I could change my work schedule and he could try half days every day.
But this time, I had the good sense to realize this is what I had been doing all along. My body and heart knew one thing, but my brain tried to convince me otherwise. Every step along the public school way I had a sinking feeling in my chest, yet I never listened to it. Over the course of the two months he was there I felt nauseous every time I dropped him off and picked him up, I had insomnia, and even broke out in hives. Within five minutes in his new school, my body relaxed in a way that it hadn’t in months.
I never want Conor to feel ashamed about not liking his school, so why should I? We didn’t fail; in fact we were quite successful in working together to make a change. And whether or not this new school is a good match is secondary to the fact that I listened to my son and together, we tried to find a solution. I didn’t criticize him for being sensitive or tell him “everyone has to go to school so you better get used to it.” Instead, I hugged him close and said, “I’m not sure what the answer is, but I want you to know I am not going to let you feel this way forever. We’ll figure it out, all right.” And together, we did.
He may never love school again, and I can accept that. What wouldn’t be acceptable is if he stopped sharing himself with me. I may not always be able to make things right for him, but hope I always have the opportunity to listen to him.
Corbin Lewars lives in Seattle with her family. She is the author of the sexy mommy-lit book Swings and the memoir Creating a Life, both out for submission. Her work can be found in Mothering, Midwifery Today, and she is a frequent contributor to Hip Mama, and A Wild Ride. She is the creator of the zine Reality Mom.
Tears at the Table by Karen L. Alaniz
Knowledge is power, I told myself as I walked into my son’s Junior high School. If his teachers understand his disability, then they’ll understand- him.
Jeremy had been diagnosed with Tourette syndrome, a neurological disorder, a several years earlier. In elementary school, only the repetitive movements, called tics were at the forefront his difficulties. And in fact, when Jeremy started junior high, I had made a conscious decision not to inform the school of my son’s disability. Jeremy had learned ways to cope with the physical tics. He was very good at concealing them. The vocal tics had subsided. But now, other symptoms of Tourette’s were affecting his progress in school. While attending a workshop, I received a packet of materials entitled, “The Educational Impact of Tourette Syndrome.” So when the school called to set up a meeting with his teachers to discuss Jeremy’s “problems at school” I decided it was a good time to share the information.
As I walked into the school, I felt as if I’d been called to the principal’s office. Until now, I hadn’t discussed Tourette’s with any of his teachers. I had taken the road of least resistance. I’d chosen a wait and see attitude. But as much as I wanted his disability to be invisible, it wasn’t. I handed five copies of the packet to the receptionist.
“We have a meeting next week,” I said. “So I want to be sure his teachers have a chance to read this first. I think it will answer a lot of their questions.”
She smiled and said she’d put a note to that affect on each one.
A week later, I sat at a crowded, round table in the over-air-conditioned room with my copy in front of me. Each teacher went around the table voicing their concerns about my son. Inattentiveness, distractibility, refusing to do his work, disorganization, not keeping up with his daily calendar, not listening to group directions; the list went on and on. I stifled the urge to cry. Then his language arts teacher, Ms. Carlin said, “Karen, is there anything you want to add?”
Don’t cry…don’t cry, I thought. I gathered my courage.
"Yes,” I said. “Have any of you read the packet I brought in last week?”
A few heads shook. A few teachers looked down.
“I have more than 100 students this year,” Mr. Roberts said. “I don’t have time to read up on each one.”
I opened the packet and pointed to the first sentence of a highlighted paragraph and read aloud, “Fifty percent of people with Tourette syndrome also have ADD.” Beneath it was a bulleted list of every single symptom the teachers had mentioned. The next pages offered strategies that teachers could use. But with impatience looming, I didn’t continue to read. By the end of the meeting, a plan was put in place and we agreed to meet again in two weeks to go over Jeremy’s progress.
I left fuming. I don’t have time? I thought. I don’t care if you have time or not. I don’t care how many students you have this year. My child needs you to understand him. This is about my child, not the 99 others you have. I was disgusted that his teachers had so blatantly dismissed my efforts to help my son. And I was disappointed in myself. My efforts to advocate for him had failed and I had agreed to a plan that I couldn’t imagine working.
Two weeks later, I walked tentatively into the meeting room. Ms. Carlin greeted me as I took my place at the table.
“Before we get started,” she said. “Karen, I just want to apologize to you.”
She pulled my packet out. The room was suddenly quiet.
“You took the time to make copies of this before our last meeting,” she continued. “You did what we want all parents to do – advocate for their child. But we didn’t make the time to read this.”
I could feel the other teachers wanting to slink under the table.
“I highlighted the things that I think will help Jeremy,” she said.
She flipped through her copy. Bright streaks of yellow covered almost of every page.
“Well, I can only speak for myself,” she continued. “But I can tell you that I have read it. I should have read it before but I didn’t and I’m sorry. The plan we came up with last week was made without this information, so I think we need to start all over.”
Ms. Carlin went on to direct the meeting toward meeting my son’s needs through the information I’d given her.
For the second time in two weeks, I had to tell myself, don’t cry…don’t cry. But this time it was for an entirely different reason. This time I blinked back the tears because someone had finally listened.
One Family’s Bipolar Journey by Kate McLaughlin
As is often the case with mental illness, the beginning is difficult to pinpoint. When Mark, my high school sweetheart, and I got married and decided to have children, our goals and aspirations were simple. We wanted a loving and intelligent relationship with one another and mutually respectful and appreciative relationships with our kids. More than anything, we wanted to be happy. We never discussed, never even considered, obstacles that might be beyond our control.
Even though depression was common in my family (my father and one brother were alcoholic and drug addicted), and Mark’s mother had a chronic mental illness we knew little about, it never occurred to us that those diseases would re-emerge in our children. We assumed that choice and circumstance played major roles in our childhood families’ problems. With my child-development and education background, and Mark’s capable self-assurance, we thought that expert nurture would overcome any detriments of nature. The now obvious possibilities never crossed our minds.
In hindsight, scores of indicators and a condemning genetic history practically screamed warnings of ultimate mental illness in our children. But we didn’t know something was wrong until bipolar disorder roared into our lives, beginning its insidious march through what we thought was right and good and forcing us to reexamine our ideas about family, success, spirituality … and even love.
After dating through college, we married when I got my first teaching job. Mark finished his degree a few months later and began climbing the corporate ladder. Eager to make a life for ourselves, Mark worked long hours while I taught school and took graduate classes. In just a couple of years, we had our first child and our first home. Chloe was followed by Michael, and then Monica, each three years apart.
Wanting to spend my days with our children, I left behind my public-school career and ran a part-time preschool at home. The kids and I spent our days learning and exploring, going to parks and wilderness areas, taking long walks, reading dozens of books, and constantly talking. All three children developed extensive vocabularies and read early.
We grew vegetable and flower gardens, cooked and baked, had preschool at home three mornings a week, and loved each other a lot. By the time Mark got home from work I was tired, so he played with the children and helped clear up after dinner. Together we read bedtime stories, got the kids tucked in, and enjoyed long, quiet evenings at home. We marveled at our good luck.
Chloe, Michael, and Monica were great kids, are exceptional people. They worked hard in school, earning good grades and praise from their teachers. They played sports, got along well with others, and were obedient. They helped around the house, did the chores listed on their charts, and cooperated. I was grateful for this. Discord and hostility marred my own childhood, and I wanted this phase of my life to be different. We really did have a happy family. Our lives seemed charmed. We never encountered anything we couldn’t figure out together— until we encountered insanity.
When Chloe completed her junior year in high school, everyone—teachers, coaches, and Mark and I—expected her to achieve her goals of maintaining a stellar academic record, getting into a top college, and going on to make significant contributions in science, math or politics. But by summer’s end, things changed dramatically; Chloe had survived two serious car accidents, started using uncharacteristically foul language, and become clumsy, forgetful, moody, inconsiderate, and argumentative. We barely recognized this persona. When she was home, the house was a battleground. I was relieved when school began and she returned to her regular routine. But that’s not what happened.
Just as suddenly as she erupted with contentiousness that summer, Chloe fell into an abyss of depression. Utterly drained, she struggled to follow her daily schedule and easily dissolved into a shaking mass of tears. She was soon incapable of getting out of bed. Having lived with depression most of my life, I knew she desperately needed medical help. I took her to our family doctor who prescribed an antidepressant and therapy. Hoping this was the cure, I felt disappointment when Chloe’s health took another turn for the worse a few weeks later.
Late one evening I awoke to light beneath my bedroom door and an unfamiliar noise. I got up to investigate and found Chloe in the clutches of what I later learned was a severe manic episode. She leaned against the back of the sofa in what looked like a standing fetal position. Her toes curled under and her feet turned in at the ankles, reminding me of Chinese women after years of torturous foot binding.
Her knees, shoulders, and elbows bent slightly, creating the profile of someone very old. Both hands were pulled into her chest, claw-like, and so tightly twisted that her fingernails cut into the skin on the palms of her hands. Her head tilted forward, hair covering her face. Her entire body was rigid and trembling at the same time, and she not only sobbed, but hissed. The most alarming element was her facial expression, so contorted that it frightened me. I began to cry, too.
I lifted Chloe’s head to look into her face, and her eyes rolled back. Her head shook so vigorously, spittle flew off her chin and splattered on my forearms. She continued to hiss through tightly clenched teeth. I remember thinking this was like a scene from a film. Surreal now had meaning for me. Ridiculously, I tried to get her to talk, peppering her with questions, petting her head, and eroding into my own state of panic.
We made such a racket that Mark and Michael woke up and came into the family room. “Mark, I don’t know what’s going on,” I sobbed. “I don’t know what to do. I’m not sure she can hear me. It’s like she’s not in there.”
When, after several minutes, we failed to get a coherent response from Chloe, we knew we had to get her to the hospital. The three of us maneuvered her into the garage and then the backseat of the car, but not before a true miracle occurred. As we prepared to move her, Chloe seemed herself for mere seconds—just long enough to raise her head, look into my eyes, and whisper through clenched teeth, “Mommy, I’m still in here.”
That was the first of many incidents that kept my fear from overwhelming me, allowed me to maintain hope, and demonstrated Chloe’s determination to be well. Without that moment, fear and helplessness might have overcome my love and determination to fight for my child. However, that miraculous occurrence galvanized my faith and encouraged me.
After emergency room treatment, several sessions with her therapist, and a visit to our family doctor during which she admitted she was in over her head, I knew I had to find a psychiatrist. It took weeks to do so, but when we did, he confirmed my worst fears: Chloe had bipolar disorder.
Over the next several years, Chloe endured rounds of cycling, trials and errors with various drugs, fleeting triumphs, crushing setbacks, hallucinations, mania, a suicide attempt, and intensive counseling before accepting the reality of her incurable illness and taking responsibility for managing her symptoms and treatment. As she finally began to regain a sense of stability and purpose, the unthinkable happened: Michael started to behave in disturbing, irrational and contentious ways. Unlike his sister, however, he turned to drugs and alcohol to deal with destructive impulses, raging suspicions, and overwhelming fears. Substance abuse and wild mood swings led to verbal abuse and threats of violence. Michael also attempted suicide, and narrowly escaped being killed by the police, before embracing a positive course of rehab, lifestyle changes, and therapy.
We’ve been at this for nine years now. Much has changed. Chloe is happily married and pursuing a career as a fine artist, in both photography and painting. Her illness is, however, quite severe and she must carefully manage her routine, sleep, medications, and stimuli in order to feel well.
Like 80% of those diagnosed with bipolar disorder, Michael chose a tough path. His drug use escalated and he nearly died of an opiate overdose last Father’s Day. Typical of people living with a serious mental illness, he has not been medically compliant. Sadly, this is the norm. Statistics tell us that 66% of people with a serious mental illness do not take their medications as prescribed. Today, Michael is working on his sobriety and found a psychiatrist he likes. By taking his medications and changing his routines, he, too, is finding a long-elusive sense of place and peace. In three semesters he’ll have his bachelor’s degree and will be ready to take on new challenges. The future looks bright! And mine does too. Having learned so much about mental health and addiction, maneuvering through healthcare systems, and finding a sense of peace and joy in drastically altered circumstances, I now write, speak and advocate for the mentally ill and those who love them.Our story may seem extreme or extraordinary, but it is not. Bipolar disorder strikes 6% of the population and, according to the World Health Organization, is the 6th leading cause of death and disability worldwide. Serious mental illnesses affect one in four American families. They are more common than heart ailments, respiratory disease, influenza, and cancer combined. Fortunately, thanks to medical advances, they are now quite treatable.
If you have concerns about the mental health of someone you love, learn more. Go to www.katemclaughlin.net for information and support, as well as links to dozens of mental health resources.
The Gift by Chynna T. Laird (Originally published on her web site Lily Wolf).
Jaimie, my three-year old, is my miracle. She hasn’t had the easiest start to her life --- she struggles everyday trying to cope in an environment continually causing her pain but not being able to tell us why. She lives with Sensory Integration Dysfunction (SID).
Jaimie isn’t able to process sensory information properly. Most people have a natural ability to tune unnecessary things out so they can focus. Jaimie doesn’t have this filtering ability so when her sensory organs receive information, she gets everything. Imagine how scary it must feel to have so much information flooding your brain at the same time and not be able to focus on any one thing because it’s coming at you so fast.
As a parent, the most painful things to experience with an SID child are (1) Inconsistency. What bothers them can change from one day to the next so you never feel like you’re doing anything right for them; and, (2) Aversion to being touched. These two things prevented Jaimie from being able to get close to anyone including her father, Steve and me.
I longed to wrap my arms around Jaimie and feel her tiny arms around me. But she’s never been able to allow herself to express her love for me in this way. Not because she doesn’t love me, but because even asking Jaimie for a hug is too upsetting for her to deal with. Jaimie hugs by putting her head out towards me and saying, “Hug”. I’ve just come to accept this expression of Jaimie’s love as “normal”.
For the first three months of her life, Jaimie loved being held, cuddled and whispered to. But as she got older she became agitated when I’d try to pick her up even if I was trying to offer comfort. It was as though my touch burned her skin. She began covering her ears and screeching at the top of her lungs at noises and if there was an unusual smell around where we were eating, she wouldn’t eat a bite of her food thinking the smell was what her food tasted like. The older she got, the worse her symptoms became.
Her sense of touch became so intense I had to cut all the tags out of her clothes because they “hurt” her; we’d have to change her clothes several times a day until she found what felt right; a feather touch on her skin threw her into an inconsolable rage; and she developed a strict need for things to be “just so” or she’d scream and cry until things were “just so”.
Worst of all, she’d resort to hurting herself in some way in an attempt to calm herself down (such as banging her head on the floor, biting her arms, pulling out her hair or scratching her eyes). What hurt the most was only being able to watch her as my touch made things worse. All I could do was push a pillow under her head to cushion the blows, make sure she wore long sleeves so the bites or scratches weren’t directly on her skin and try my best to shield her eyes and hair. This made me realize she needed help far beyond what I could give her on my own. Jaimie received her SID diagnosis when she was two and a half and she began therapy to help her learn to communicate and to cope with her feelings. Steve and I were actively involved in her therapy so we could help her at home. For Steve, it was a way to help him finally be able to bond with his daughter he’d only been able to love from a distance. More than anything, I was grateful to finally have name for the unknown, unseen assailant I’d been fighting since Jaimie was born.
It wasn’t an easy road. Jaimie had a real problem with anyone coming into her sacred world of routine and organization. But I saw positive changes in Jaimie’s little personality as she slowly allowed people in. Perhaps she felt there were actually other people in her life besides me who understood what she was feeling inside and who liked her in spite of it. Jaimie was beginning to express in words what was trapped in her mind. Yet, despite the positive aspects of her therapy, she still refused to be touched and would become very distressed even if we just talked about hugs. So, I simply waited with my arms ready.
One evening, Steve made me an offer I couldn’t refuse: “Hun, why don’t you go out for a walk and let me hang out with Jaimie.”
Jaimie had been doing so well with her therapy I thought, “Let’s give it a shot!” This was the first time I went anywhere without Jaimie since she was born. But I was worried because Daddy didn’t always do things exactly the way she needed them to be done nor had patience for her strict routines, and this caused Jaimie to explode in frustration. Still, she had to let herself try to trust him. What if, God forbid, something happened to me? All she’d have would be Steve.
I got ready to go then told Jaimie I was going out for a little while. She was coloring at the kitchen table and didn’t seem to notice I’d said anything. I looked at Steve who nodded at me then kissed me on the forehead.
At first, I felt a wave of guilt that tried to pull me back to the house. But after a few minutes, I felt exhilarated - so this is what it felt like to do my own thing. Considering I couldn’t even use the bathroom without leaving the door open because Jaimie needed to know where I was all the time, that walk was like going to a party for me - the best 20 minutes of my life. As I approached the house, I heard what I thought were crow screeches exploding from our house. Then I realized it was Jaimie.
I flew up the front stairs fumbled with my keys to open the door then found Steve straddling Jaimie on the floor, holding her arms and legs so she wouldn’t hurt him (or herself) as she screamed: “No! I don’t like you. I want Mama.”
Steve heard my sneakers squeak across the linoleum and looked up at me like a doctor who’s losing his patient --- tortured. His tears fogged up his glasses so I cupped his chin as I dropped to the floor. He enveloped my hand in his with a gentle squeeze and put it on top of Jaimie’s chest, then left the room. I took Jaimie off the floor and held her to me as she soaked the front of my shirt with her tears, sweat and drool.
For over two hours I tried every technique I was taught to calm Jaimie – nothing worked. Finally, I had no choice but to put her in her bed so she could release the rest of her fit in privacy. I went to the solitude of my room, flopped on the bed like a rag doll and allowed myself to do something I hadn’t for a long time: I cried. I didn’t stop the tears from coming like I usually did – I allowed them to flow freely.
I cried because I was angry at her for having SID; because I felt helpless and scared I couldn’t help her; for losing my temper with her when she wouldn’t stop crying; for being frustrated because I didn’t understand what I was supposed to do; for feeling guilty that I wished she was “normal”; and, mostly, for Jaimie – because she knew she was different but didn’t understand why. Why couldn’t she let us reach her? Why couldn’t I, her Mommy, help her?
Drained after my emotional release, I heard Jaimie downstairs with Steve. I splashed cold water on my face in a feeble attempt to reduce some redness in my eyes then went to join my family. As I descended the stairs, I assured myself someday I’d reach her. I saw in her big blue eyes she had so much love she desperately wanted to give but her body simply wouldn’t allow her to. Someday, she’d trust me enough to show me.
I entered the living room where Jaimie and Steve were watching a movie.
“Can I join you guys?” I asked.
Jaimie turned and ran to me when she heard my voice. “Mama!”
I crouched down so she could touch my leg with her head but instead she wrapped her tiny arms around me and hugged me – a real hug. I was in such shock it took me a few seconds to hug her back. I wrapped my arms around her tiny body and she whispered: “I love you, Mama.”
“Oh Jaimie,” I whispered back. “I love you too. So very much.” For the first time since she was born, I felt the joy other Mommies felt when their child expresses their love. Her hug only lasted for a few seconds but even as she pushed away from me to finish watching her movie, I still felt the warmth of her arms around me. I knew it would be a long time before she’d hug again but I wasn’t sad. Her hug was a sign of good things to come and it renewed my hope.
Thank you, Jaimie for your precious gift. I will treasure it always. __________________________________________________________________ CHYNNA T. LAIRD – a mother of two beautiful girls Jaimie (almost five) and Jordhan (three) and a baby boy Xander (1). In addition to living her dream building up her at-home freelance writing business (Lily Wolf Words), she is also currently studying in Edmonton, Alberta (Canada) to obtain her B.A. in Psychology, specializing in Early Childhood Development. She's won writing contests in ByLine magazine and her work has been published in various parenting, writing and inspirational magazines in Canada, the United States and Australia (see "Published Works" for details). As well, she has a personal essay featured in Chicken Soup For The Soul: Children With Special Needs. She is most proud of a children's picture book she's written called, "I'm Not Weird, I Have SID" where she describes--through the voice and perspective of four-year old Alexandra--what it's like to live with Sensory Integration Dysfunction (Sensory Processing Disorder).
From Chynna: Sensory Integration Dysfunction (SID) is also known as Sensory Processing Disorder (SPD) and Dysfunction in Sensory Integration (DSI). Simply put, an SID child isn’t able to interact with his/her external environment properly because their brains are unable to process sensory information effectively. SID isn’t one specific disorder but an umbrella term for a number of neurological difficulties.
Each child with SID has a unique combination of varying symptoms, and therefore, it can be very difficult to diagnose and treat. Main categories that Occupational Therapists tend to test these children under include, but aren’t limited to, “Sensory Modulation Problems” (how the child regulates responses to sensations); “Sensory Discrimination Problems” (inability to distinguish one sensation from another); “Sensory-Based Motor Problems” (how the child moves/is aware of his body); and “Associated Regulatory and Behaviour Problems” (issues that can result from SID).
A child suffering with a severe case of this disorder can affect his/her ability to interact with other people, ability to function in daily life or even just enjoying being a child. This disorder can’t be cured, but with proper therapy and care, the child can learn how to recognize sensations and learn to cope better dealing with these sensations [refer to the book The Out-of-Sync Child, by Carol Stock Kranowitz (The Berkeley Publishing Group: New York, 2005)].
I wrote this story not just as a reflection of my own experience, but also to, hopefully, extend some hope to other Mummy’s with SID children, or with other forms of Autism. Don’t give up hope. They know we love them, and with patience and understanding, they’ll show us they love us too.
Now What? A Single Parent Story by Melissa
Some nights get to me more than others, the nights where I hit that Now What moment. I’ve put the kids to bed, either in their own room or in mine. I’ve finished up the dishes. I’ve picked up anything lying around that I would rather have in its space. I’m done with work for the night.
I’ve gone through all my time killing strategies. And I’m stuck.
I don’t feel like reading, I don’t feel like staring at the television. I’m not sleepy enough yet to try to go to sleep. I want to talk and snuggle with someone. I really do not want to be alone and I am.
One of the harder parts of divorce has been those moments at the end of the day when I want to talk about the day with the boys, maybe it’s the letter I got from the kids’ school or the funny thing Brett said. Whatever it is, I want to go over their life with someone who is in their life, too.
I have a boyfriend. I adore him. He is not here every day; he does not stay the night. He is also NOT their father and will listen and care, but he isn’t going to be actively involved in their life any time soon.
I want a co parent back, without having my crappy marriage back. I don’t even have babies anymore, and I’m sure many, many mothers just want another pair of warm hands to hold the baby while she races to the bathroom. It’s just that some nights, I want to decompress what I’ve done as a parent that day. Or just share what made me laugh with someone else who knows and loves these two kids like I do.
And after I’ve killed all the time I can, now what? I need to learn how to dissemble on my own and be my own sounding board. Or really, to just trust myself, assume I’ve done a pretty decent job of parenting, and watch Project Runway already.
Melissa is a divorced mother of two boys, age thirteen and eleven. She teaches the history of art to college students and writes at her Blog, Sugared Harpy.
Wading In: Parenting in Cool Waters by Mary Thomas
I am the parent of a soon-to-be teenager,
who’s been wanting her own apartment since before she could
walk. This is a kid who puts more energy into her quest for
independence than I put into my attempts to fit into my
pre-pregnancy jeans. Her “live free or die” philosophy
baffles her befuddled parents, and not just because she’s
never even been to New Hampshire.
My husband and I don’t get this temperament, as he and I were both line-toers as kids. We rebelled occasionally in our own silly non-rebellious ways, but we both lived to please our parents and that drove most of our decisions as teenagers. So when it comes to our daughter, we teeter precariously on the line dividing the two extreme reactions to a pre-teen who seeks to be in complete charge of all aspects of her life: we either control her every move until the day we ship her off to college, or we give her all the space she wants and hope she’s got it in her to stay safe. (Boarding school is another option, but that thought only comes to mind on really bad days when I’ve had either too little or too much coffee.)
Obviously, the only way to proceed is to find the happy medium between total domination and total submission. She, of course, would disagree with this conclusion.
When new requests for freedom come up, I repeat the words of a wise friend of mine, a single mom with two teenage daughters. “Hey – I’ve never been the mom of a (fill in current age here)-year-old before, so this is all new to me too,” she sometimes says to her oldest. The great thing about this line is that you can use it until your first-born is 80, since all territory is uncharted when it comes to parenting a first kid.
Last summer, my daughter and I came upon the vast, uncharted territory of the beach near our home. Just after she turned 12, I took her and a few of her friends to the sandy shores of Puget Sound on a lovely, sunny day so that they could explore the treasures among the driftwood and the tide pools. This section of the Sound is typically too cold to swim in without a wetsuit, but it’s a great place to while away some outside time. I even packed a basket with snacks and drinks for the girls, and agreed to stay a respectable distance away. (After all, you never know when the cutest boy from school might wander by. And if he were to see my motherish self nearby, he might change his mind about proposing to one of them.)
“Mom, do you HAVE to come with us?” my daughter asked, suddenly slumping as if her spinal column had collapsed just a bit.
“Yes, but your brother and I will pretend not to know you if that would make you feel better,” I replied, only slightly kidding.
“Mo-um!,” she argued, using the two-syllable variation of my title. “But that’s so embarrassing. Nobody else has to go to the beach with their parents and their little brothers,” she insisted, once again reminding me how she is singularly deprived of most privileges enjoyed by ALL the other kids (who, apparently, lack parents altogether and live by no rules whatsoever).
“You won’t even know we’re there,” I assured her. “We’ll completely ignore you, and stay far away.”
She reluctantly agreed to the plan, grabbed the picnic basket and began marching with her friends so as to get a good lead on my son and me.
“Mom?” She continued walking, but turned her head to ask me one last question.
“Yep.” I watched as they walked farther away, hoping I could hear whatever it was she wanted to ask. This while I pondered how much of a head start I could safely give them.
“Can we swim?”
Absolutely not. No way. You’re not that great of a swimmer and I have no idea whether the other girls can even tread water and I’m responsible for all of you. Swim? Are you joking? That’s outrageous that you would even ask such a thing. Besides, you’ll get soaked and you didn’t bring a change of clothes. There might be sea monsters under the surface or a freak tsunami might hit any minute, and then you’ll be out there all by yourself and I might not be able to help you. And what if some creepy pedophile comes up to you in the water and whisks you away onto his nearby boat? Because you’re starting to develop and if your shirt gets wet, it might give someone the wrong idea. Swimming is just a terrible plan and it makes me nervous and I absolutely forbid it.
That’s what I said in my mind.
With my mouth, I said, “Just wade in to your knees.”
And that, I realized, sums up every single impulse I have about parenting this precious, beautiful, infuriating child. She wants to dive in, but I need her to take things one small step at a time. She wants to forge her own path, but I need her to stay closer to the trail her dad and I do our best to carve out. She wants to become the world’s youngest adult, but I need her to remain a kid just a little while longer.
In these moments when she pulls away and my husband and I try to tug her back in, we all end up with sore arms. But each of us is working to appreciate the perspective of the others. She continues to ask for a wider berth, although she (sometimes) agrees to modified terms. We do our best to remember what it felt like to have feet planted in both the kid and teenager zones. Not surprisingly, there’s a direct relationship between the stretches when our daughter most passionately waves her freedom flag and the frequency with which she climbs sleepily into our bed in the middle of the night. Our job is to guide her toward appropriate forms of independence that balance her desire for autonomy with the harsh reality that she’s only 12 years old.
For now, she may wade in to her knees. Soon enough, she’ll be up to her chin. And before any of us know it, she’ll be in the open water and I’ll no longer be on the beach watching. By then, with luck, we’ll all have adjusted to the temperature of the water.
Mary Adam Thomas is a freelance writer based on Bainbridge Island. Her two amazing children keep her on her toes, and never fail to provide her with great material.
Time Out: Single Parent Story by Kelly
Picture this; you're picking up toys, with a meal on the stove, laundry in the washer, and the kids running wild. The telephone rings and as you attempt to answer it, there is a knock on the door and a crash in another room. You try to handle everything at once, and it blows up in your face. By the time you get to open the door, you look and feel like a raving lunatic.
Believe it or not, it happens to everyone. It can be maddening, and it is only human nature to get frustrated and angry.
The important thing is that you take a step back and a deep breath. Everyone has bad days, however it is important that you recognize what you are feeling and take a time out.
Yes, I said take a time out. Children are not the only ones who need time outs. When the stress of the day is getting to you, and you feel like you are going to snap, go to another room, close the door and take a deep breath.
Taking a time out will not only give you time to regroup and get your senses back on track, it will also give you time to think of ways to avoid the situation again. Taking ten minutes for yourself is therapeutic. If you feel you need more time to regroup, go for a walk around the block. It is good exercise and the kids get some energy out.
When you give yourself a time out, use the time wisely. Think of the situation that caused you to get to the point you are at. More often then not, you will eventually find humor in the whole situation and be able to restore your sense of harmony.
Kids will be kids. They will always be rambunctious and full of energy. They are very intuitive and know just what buttons to push to get a reaction. No matter what situation, try not to overreact, if you feel yourself slipping, walk away and handle whatever the situation is when you have had a chance to settle yourself. That is one of the great things about time outs.
In today's economy, it is often necessary for both parents to work. This, in addition to all of the responsibilities of taking care of a home and family can lead to an extended day and lack of sleep. It is very easy to become overtired, frustrated and just drained from stress. Taking a time out will show your children that you discipline yourself as well as them and that time outs can be given to anyone.
Kelly is the mother of 3 children, 2 of which have severe difficulties. She lives in the New England region of US and is a work- at-home mom for 5 years.
The Greatest Gift by Karen L. Alaniz
God definitely has a sense of humor. How else can you explain my life? My son has Attention Deficit Hyperactivity Disorder (ADHD) and I have chronic fatigue, due to Multiple Sclerosis. The very activities that send my son into spirals of motion, zap my energy and leave me wilted in the corner of the room. I didn’t always see the humor in it. In fact, I fretted over it for the first few months following my diagnosis. It was so unfair. My child had an abundance of energy, and I couldn’t begin to keep up with him. I’d look at him whirling around, bouncing energetically from one activity to the other and get tired just watching him. But my son and I would learn, over time that our greatest challenges were also our greatest gifts.
Any parent of a challenging child understands fatigue. Fatigue is relentless; it never gives up. It begins with the first tantrum of the day and insists on hanging out until the last glass of water is delivered to your child’s bedside.
When I came out of the fog of self-pity, I made a decision. I would learn strategies to ensure that I’d have the energy to reach, teach, and love my child, as much as humanly possible within the limits of my disease. And what I learned, I believe anyone can benefit from.
Pace Yourself
Every day before your feet hit the floor, you’re already ten steps behind. There are meals to make, phone calls to answer, kids to tend to, cleaning to be done, dishes to load, and laundry to wash. And that’s all before breakfast. The parenting life is not a sprint; it’s a marathon, so plan for the long haul.
Plan for Hectic Days
Some days it seems as if everything is conspiring against you; a company meeting, soccer game, violin recital, basketball practice, and an art project that was due yesterday. The day doesn’t have enough hours in it to finish all the tasks set before you. But most of the time, you have some advance notice that the day will be full. Use that knowledge to create a balanced plan. If you know that your evening will be crazy, pick up fast-food for dinner. If you know you have a stressful meeting at work, plan to go for a long walk, or go to the gym for a workout before going home to your family. And if your child has a recital, rehearsal, practice or a game, clear your housework schedule for the day.
Prioritize
Think about your day in terms of priorities. What is the most important thing you will do? Spend time with your daughter? Bake cupcakes for your son’s class? Get all of the laundry done and put away? Prepare for a presentation at work? Once you’ve set one or two priorities, you can focus on getting them done. And then at the end of the day, you will have a sense of accomplishment. You may even find that with just a few priorities to focus on, you have little chunks of time to do other things; put a load of laundry in the wash, dust the dining room, vacuum the living room.
Give Yourself a Break
In your head, you know that the world will not quite spinning on its axis if you haven’t checked all the boxes on your, “to do” list by the end of the day. But your heart keeps saying, “You should be able to do it all. Everyone else does.” When a day is so full that you feel unable to cope, that’s when you need a break. Give yourself a day to do whatever you want. Plan it if you have to; ask your spouse, your best friend, or a relative to be your children’s chauffer, and cook for the day. Whether you spend the day at home or out somewhere, spend it doing what you love. Scrapbook some photos, write in your journal, take a bubble bath, read a book, drive to a scenic area and walk on the trails. Do it for yourself because you deserve it. Honor yourself by creating time for yourself. In our culture, if we waited for someone else to see our need for time away, we’d never get it. It’s healthy to spend time away from your family. You may not be able to get away for days, but how about hours? Making time for yourself is not just good for you; it’s also good for your spouse and your children. Watching you take care of yourself is a gift you can give to your children. You are worth it, and so are they.
Unwrapping the Gift
No matter what shape your challenges come in, if you look closely, you will see that each one is gift wrapped. Sometimes they are wrapped so snuggly that the wrapping must be removed with one tiny tear at a time. Sometimes the wrapping looks more like duct tape than decorative wrapping paper. But if you remove one tiny piece at a time, you will find that beneath all of that wrapping is a beautiful gift that’s been there all along. Your greatest challenge is your greatest gift.
Comfort in the Waterfall by Laura Munion
Being a parent of children with autism is an especially trying job at times. However, I wouldn't be the same person I am today without my kids, difficult behaviors and all. Also, my kids can reward me with unexpected empathy and understanding when I least expect it (and need it most).
As I helped my daughters get ready for bed, I reflected on my life. Why did things turn out the way they did? Did I do or not do something to make things wind up how they are now? I never planned to have children; what would my life be like without them?
The more I thought, the more I decided that I’m grateful I don't know what it would be like without my little girls. I've always been a depressed, pessimistic person, and they help me get out of that slump. Sure, they add additional stress, but I wouldn't trade being their mom for anything.
"Waterfall! Waterfa-a-alll!" Celest yells, snapping me out of my thoughts. She is angry because I told her we would go to bed and watch the table top waterfall lamp, but I am getting her and Lotus some milk before I take them to bed. Obviously, I am not doing it fast enough for her.
"In a minute!" I yell overtop of her continued yells for the waterfall. By the time I have the milk ready and am heading for the stairs I see Lotus snuggled up on the couch.
"Come on, Lotus, we need to go to bed." Celest sees me stop walking, and she begins to cry about the waterfall again. I half yank Lotus off the couch so that her little feet touch the floor.
As we walk upstairs to the bedroom and the beloved waterfall, the girls grow quiet and I begin to think about my life again.
Well intentioned people have told me more times than I can remember, "God never gives us more than we can handle." I always just smile at them to be polite. I don't bother to tell them that I am Agnostic. Anyway, they tell me this because both of my daughters have autism. They are my only children, and this is the only life that I know with them. My girls developed normally until they were about 15 months old. Then temper tantrums, lack of language and communication, sensory sensitivities, and the other manifestations of their autism became our norm. I don't want pity or trite phrases. I want answers.
What causes autism? The mystery of why they have frustrates me. I feel that I will never know definitively why them, why me.
Back to the pity issue; I don't want it or need it. Sure, when you see me walking around dazed and with black rings under my eyes because the girls have been waking up at 2 a.m. for the past three nights and insisting that I get up with them, I may look pitiful. But still, keep the pity for someone else. I love my kids. Somehow I’ll survive until they get their sleep patterns back on track.
Also, I don't mind so much only going out one Saturday every three or four months. That's more than some moms get.
This leads me back to wondering why things happen, when and to whom? Did they “get” autism because of the mercury in the fillings of my teeth? From their vaccines? Would I be the same parent if they weren’t autistic?
For me, at this point, their autism is part of them. They wouldn't be the same kids without their complete lack of shyness and embarrassment. I mean, not very many people can fart quite audibly in public and not feel ashamed.
"Waterfall…" Celest whispers as she falls asleep. The waterfall is on the table in her bedroom. Its little red, blue, and green LED's flash on and off, making the water seem to change color. The water trickles over blue stones at the base of the waterfall. I lie on the floor and curl up next to the table, lulled into sleepiness by the waterfall that has just soothed both of my daughters to sleep.
Laura Munion is a freelance writer and single mother of twin girls with autism. They live in central Ohio.
Being a parent is supposed to be a rewarding experience right? That is what we grow up believing and that is what we expect.
However, sometimes life does not work out the way we expect it too. When I was expecting my daughter, I was elated to find she was a girl. I already had a son and a daughter would complete the picture.
My pregnancy was normal, and there were no complications. However in my 7th month, I went into labor. There were no causes for it, it just happens, I was told.
From the beginning, even when my daughter was in the infant ICU, I knew there were going to be problems. I was told to expect it. Premature babies suffer from a lot of different illness, some medical and some emotional.
My daughter grew out of her medical complications fairly quickly and became a thriving yet demanding child. I really never gave too much thought to it because she was so healthy. She was (and is) a beautiful and intelligent child who wanted everything.
I gave in most of the time, and as she grew older, her demands grew with her. Around 2 years old, I finally put of foot down and began the task of disciple and teaching her appropriate behavior.
She would have none of it. Her demands grew into fits of rage when she did not get what she wanted and violence when she was told no.
As she grew, I realized that something was not right. After being taken to several different doctors, and told that there was nothing wrong, frustration began to take hold of me.
No matter what method of discipline was used, nothing worked. Being a parent who does not believe in spanking, I tried everything else there is to try.
When my third child was born, my daughter did everything she could to get him out of our house. She would do things to hurt the baby, and it was necessary to monitor them at all times. They could never be left alone together.
At one point, it was necessary to hire a babysitter just to go food shopping because she did not get what she wanted.
The screams of rage and anger ran through our apartment building and neighbors would knock on our door to make sure she was all right.
One doctor suggested that I spend time alone with her and it seemed to work for a while, however the more time I spent with her, the more time she wanted. The more presents I bought her, the more she wanted. I was told that she was jealous of the new baby and could understand that. I set a side one day a week that I would spend just with her. It turned into a nightmare when she disappeared in a store one afternoon and the manager of the store locked it down so until we found her an hour later, underneath one of the displays.
When my daughter started school, she began to calm down; I thought that maybe that is what she needed. However, after about two months of school, the teacher called a parent teacher meeting. I found that my daughter was telling horrific stories about her home life and could not believe that she could come up with such things.
My daughter had taken aptitude tests in kindergarten and it was determined that she had learning disabilities which are common in premature babies.
The frustration that she felt at school was unleashed at home to the point where we did not know what to do. This has gone on for four years.
After years of bringing her to different doctors, we were referred to a behavioral specialist and it was determined that my daughter has many different disorders that need to treated with both therapy and medication. She has responded very well to both treatments and is finally becoming a happy child. She even laughs now, something she has done rarely in the past.
The point of my story is that as parents, we all have instincts regarding our children. Never let someone tell you that your instincts are wrong. It is your child's health and welfare that is at stake, and if it is necessary to see twenty doctors to find answers then do it. No one knows your child better then you.
My daughter went through years of behavioral problems that could have been managed before they grew to the level that they did because I ignored my instincts and followed the advice of others.
As a parent, I felt that I let my daughter down by not pursuing every avenue. I followed advice that led to more problems and I was physically and emotionally drained from this experience.
Expect nothing and parenting gets that much easier. Before I had that piece of knowledge in a sweaty new parent hand, I had expectations. Expectations of pristine report cards and unblemished popularity. Of supreme athleticism and fearless philanthropy. A beautiful mind without troubled thoughts, actions, words. Perfection in an imperfect world would be my children and I expected nothing different or else.
Until a 9-1-1 dispatcher asked me if my baby was still breathing and I had no logical way of answering his question. She was stiff and unmoving, unresponsive to my touch, unable to withdraw even from the hand of the man who'd hours before given her irrevocable brain damage.
Brain injury. Brain damage. Traumatic brain injury from shaking the baby. Wiped clean, someone in the children's hospital offered as though there was hope in a brain wiped clean. It's better to try to teach her three months' of stuff than thirty years' of stuff was the theory.
Oh.
Except that no one really had the proper way of telling me, a brand new mother who'd never tried to teach a child anything at all, that teaching the damaged brain is harder than scraping off dried shit. What you want to stick sticks not. What you want to wash away stays for an incredibly long long time. Get used to staring at the stains left behind, the ones that will not go away, no matter the reputation of the private school and cost of the tutors.
In a release of all expectations, two lives were born: that of my daughter as a funny, routine-driven friend to the underdog and of mine, more of a rules-are-for-suckers deist, abandoned by God, embraced by daily minutiae. Whatever works became our motto. She compensated for her physical weaknesses and mental deficiencies through adaptation and charm. I mourned our losses with a change in worldview, an ennui nearly unchallenged even when jarred by horrific events elsewhere. What is the violent deaths of thousands of people when my 12-year-old has no concept of long division?
My son was born and I found out this: picking up your child from the babysitter and discovering one unconscious infant is not a normal piece of living. Babies can learn without the additional necessity of hospital outpatient staff. Indeed, popsicles are for eating, dripping, making messes, not for stimulating the lower lip to encourage spontaneous babbling. Most babies babble without the assistance of occupational therapists, you know. Silly Mommy.
Six-year-olds enter first grade without having repeated kindergarten twice.
Some kids join sports teams with no extra explanation or accommodations needed.
On the flip, some kids are also well aware that commerce trafficked through the television is available to the annoying asker, the more annoying the better, is the misguided opinion. The one who knows television only as the messenger of the Bel-Air fresh prince is the one to take to the mall on a quickly needed errand, not her two-side-brained brother looking for Floam.
One of each I have. Girl and boy. Girl with the right side of her brain swimming in fluid being the one who keeps the family both on schedule and from too much whimsy. Boy with both sides firing light sabers and the capitals of all 50 United States. The disciplinarian versus the one who needs disciplinarians. The big sister with absolutely no concept of time who is never late walking the two of them to the little brother's early morning school bus. The six-inch medical file and the simple "NKA".
Mommy is somewhere in the middle. Coveting nothing from the universe, receiving everything it can offer. This is much better than I'd expected.
Erica (aka Fringes) writes on her Blog at 650miles.com. Before regaining her sanity, she wrote about her personal crazy. Now she writes about the three unconditional loves of her life. She wishes to God she were not so boring. Yes, insanity made her that much more interesting, but also more interested in knives and scissors. Boring, she freely admits, is good.
Story Index
Peace Starts
At Home by Rene Vernor
“Pick up the phone bitch.”
A male voice on the answering machine. While I try to sleep. Peacefully.
Wanting peace.
Wanting peace in the midst of chaos, in the midst of financial hardship, in the midst of
war poverty injustice inhumanity human suffering
“I will slit your throat”
I am suffering–
I don’t know that voice.
But, I know another voice
another voice
that utters
that same word.
Bitch.
Bitch
Bitch
Bitch is what some feminists say women
are
called when distinguishing self from doormat.
I am not a doormat.
I am not a bitch.
Bitch.
I read the personal files.
Of many domestic violence survivors.
bitch, slut, whore, fat, worthless, stupid cunt.
The women recount, the men recant.
I listen to their stories
While I think of my Own
Stories.
My own.
Father.
Shot to death.
By police.
In front of me.
I was almost four
he was 29.
I cannot seem to get over it.
Bitch.
I march for peace
in the midst of the madness.
I go to antiwar rallies
even though there is no peace at home.
Peace starts at home. They say.
I try and create peace in my home but it seems I only start more wars.
I conclude:
The easiest way to peace is through the absence of others.
He calls me the same names that the women in the shelter are called.
Bitch, whore, slut, fat cow, ugly pig, lazy cunt
Only
he is my son.
I think
what have I done to create this, to deserve this.
What could I do differently? What could I have done?
Its too late to change the past.
Insecure attachment, multi generational dysfunction, bipolar, sociopath,
conduct disorder, narcissistic child all caused from: overprotective mother, permissive mother, no father, selfish/ self absorbed mother/depressed mother a mother who is too strict, too this too that.
The experts say.
I am always too. Or not enough.
According to the experts.
my son,
The war in our family wages on--
similar to the wars in the world.
Holes
in the doors.
Holes
in the walls
I don’t put holes in things that the visible eye can see.
Rage consumes him.
He wants to fight
broken windows, tattered curtains, shattered dishes, destroyed art pieces
that he made
for me
when he was too young to wage war
against his own mother
my own home;
a war zone
Stop the war! the Irony!
If only the people
at the peace marches knew the truth
about my life.
I stop going to peace marches because it seems absurd.
How can I espouse peace in the world
when I cannot figure out how to create it in my own home?
He says he loves fighting.
He says he wants to join the army.
He says that he is going to drop out of school.
He thinks he is a gangster.
He thinks drug dealers are lucky
because they make more money selling drugs than his own mother
who does work she believes in
Even though it barely pays more than minimum wage.
He hates hippies, and idealists and feminists, too.
and I am a hippie (wannabe)
and an idealist. A feminist, too.
I want equality for all
I want to see a better world, to be a better self.
Next: he will be a conservative right winged republican
he says someday someone
is going to kill me
because I want peace
peace in the world
peace within myself
bitch, whore, slut, fat, lazy,
I want peace.
I want peace and quiet.
In the world,
in my home.
In my life
in my mind.
In my soul
I want to BE peace
instead,
I live and know violence.
I don’t like it ( Who would?)
it is true, that
My stepfather also died violently. He burned to death.
In a fire. Was in ICU two weeks before he died.
Third degree burns everywhere.
The previous two women
he was married to, barely escaped with their lives. He called them names, too.
Bitch, whore, slut, fat, crazy.
Some say that he deserved to die like that. For that.
Still some others say, an angry woman
started that fire.
And burned him to death.
More violence. Less peace.
I walk away.
My son wants to fight.
I say: fight with words.
That is what you do, not I, says he.
My son says that one of these days he is going to punch
punch me hard in the face.
He wants to knock me out. Knock me out cold
In some ways, I don’t blame him.
I am not a perfect mother.
Never was.
I am afraid of him now.
Reading books about juveniles who kill their mothers
does not help
me much.
Call the police, people say.
I see him in his orange jumpsuit,
in handcuffs, a belly chain,
I cannot call the police again.
The police are the enemy.
They are representatives of, represent the state
they beat, arrest, and tear gas people like me
during antiwar protests
the police killed my father.
the police are biased towards women, the poor, people of color, gays--
Bitch.
He says that his friends say that he should kill me. Because I am a snitch.
“You are so pitifully ugly, too “he adds
Men in the Teaching Men Non-Violent Solutions Class I facilitate say that even though
Men
won’t admit it, especially not
in a Court-Ordered Class
the truth for All Men is this:
men really want to slam
a woman
against the wall
when she Nags.
To shut her Up.
Silence the bitch. It is just a man’s truth.
“If she wouldn’t nag, we wouldn’t want to slam her against the wall.”
They say.
walls.
My walls are filled with holes.
My heart is filled with holes.
The world is full of holes.
I have many walls
Pick up the phone, Bitch.
I don’t pick up.
Probably the wrong number anyway.
Rene lives in the Midwest and is a single mother of one son, who still struggles.
Story Index
What to Expect When Your Mother’s Parenting is Not What You
Expected by Amanda
Every daughter’s relationship with her mother is special. I hoped that my relationship with my mom would have changed once I had a baby. Maybe she would treat me like an adult now, because living away from home for nine years, obtaining a Bachelors degree, a successful career, a marriage of four years, and buying my own home had not changed her attitude yet. To her I will always be the little blonde girl on her 10-speed bike. I shouldn’t have expected help from my mom given her past history in my life, but I hoped things would have changed when she saw me mother. They didn’t. She still patronizes me, gives guilt trips, and doesn’t physically help with her granddaughter.
I want to believe that my mom means well with her advice. It’s just that the delivery comes across so condescending. Her words make it seem as if I were an idiot with my new baby, Annabelle. “She needs socks. Where are her socks?” “Her feet are cold. She needs socks.” “Mom, it is 98 degrees outside. She is fine, Mom.” “She needs socks.” I mailed an 8x10 of my daughter’s beautiful studio Christmas photo. One of her first questions was, “Amanda, you are not destitute. Where are her socks and shoes?” I give up. I am so thankful for Robeez shoes, because she does not need socks to wear those shoes.
Breastfeeding became a source of criticism. “You don’t pump?” “You don’t give her any formula?” “You don’t give her a bottle?” “You have never given her water?” All questions I had to answer. I try to remember her frame of reference. Breastfeeding was not encouraged when she had her three children. I don’t think she would have gone through all of the trouble to nurse, even if it was encouraged.
I don’t expect my mom to listen even if I try to explain my decisions. I have tried to. She only replies with her advice. It isn’t not worth my energy to argue. What she knows is right and I will always be wrong.
She tried to explain to me one day that my daughter would be fussy a lot, because she is teething, even though she hadn’t seen her granddaughter in five months and does not know her temperament. I casually replied, “She is fine. Actually she is doing really well.” “No, Amanda, I have had three kids, including you. She will be fussy.” Thanks Mom for the encouraging words. I will listen to you from now on, because you are the Grand Poobah of parenting. My hospital offers a class for grandparents. The description of the class reads, “Times have changed since you have had a baby. Come and find out about new safety and parenting standards.” I wish my mom lived close enough to take the class. Maybe then, she'd learn something new and I would not have to be on the defense all the time.
My mother is a very generous person and she loves to give gifts, but she is also a shop-a-holic. I know she can’t always afford to give me the clothes and toys that she purchases. There is nothing I can do about her shopping habit, but I try my best to steer her in the direction of our actual needs. I exchange a lot of items, because our tastes are not the same. When I was pregnant, she asked me at least twenty times what my nursery theme was. It was really difficult to explain my modern Ikea nursery to her. Also, she tries her best to buy the right sizes in the right seasons, but she does not always hit the mark. Explaining why the pleather jacket is 6 months too big for my daughter is not easy. “It was the smallest one they had!” “I thought it looked small enough.” I appreciate my mother’s thoughtfulness and do my best to use what she gives me. I always try to put on her gifts on Annabelle when we visit.
We have only made the four-hour drive to my parents twice in the first 8 months of Annabelle’s life. The first visit was so bad, that we did not go back for another five months at Christmas. My mom had bought a crib, changing table, and nursery set. We felt compelled to stay at her house, because of the crib. Much to our chagrin, the crib also doubled as storage for dust-collecting stuffed animals in the same room with a large cockatiel birdcage. This was also going to be the first time that she did not sleep in the same room as us. Her room had a funny smell and a loud buzz from the air conditioner. Annabelle slept all right, but we decided to not give into the pressure next time and get a hotel for our second visit.
The second visit was much better, but some of my mother’s behaviors were still the same. She has never once offered to help change a diaper. We have to push Annabelle into her arms. Once Annabelle is there, she cries and fusses. She started crying really loud in my mother’s arms at a Christmas party while I was occupied across the room. My mother yelled for me to come get Annabelle. I knew my baby was fine and there wasn’t much I could do for her. I let her cry for a little bit. Then she yelled at me in front of everyone, “Amanda!" Come get her right now!” She also verbalized her offence that I kept wiping off every toy and item that my baby teethed with. There are three dogs and three cats in her tiled house. Maybe I was too paranoid about germs. I honestly don’t understand how my mom is interested about her granddaughter from a distance, but once she is in the room, she does not pay much attention to her. Her lack of enthusiasm with her granddaughter hurt my feelings.
I love my mom. I desire a mutual and understanding relationship with her. I want to be able to ask her for advice, but not at the expense of being treated like I am stupid. It is hard to let her words roll off my back, but I have to let them. I know I am a good parent, even though my mother has never said that I am.
Through my relationship with my mom, I have learned a lot about how to treat Annabelle when she has her own children. I hope that I can be understanding of her parenting choices and respect her as an adult. I don’t want to continue the cycle of guilt and control. I want to trust and listen to my daughter. My hope is that I can be a supportive grandparent in every way possible. All I can do is raise Annabelle the best I can and pray that she learned everything she needs to be a great mom. I know that she will learn what a great mom is from my example first.
From Amanda: I am the mother of my adorable combo-burrito daughter, Annabelle. She is 8 months old. I stay home with my daughter and help my husband with his web development business. I also created a parenting Blog with my friends called, The Mom Crowd. I am a graduate of The University of Texas at San Antonio with a Bachelors Degree in Human Resources Management. I worked for six years as a professional Human Resources Specialist for the U.S. Air Force. My husband and I train and take teams on mission trips. We love to travel the world and enter new cultures. Our daughter already has two stamps in her passport!
A Wild Ride announces a new feature this month. As I See It is designed for family members, friends, therapists, other professionals to share their suggestions in support of white-knuckled parents. Our first As I See It contribution is from our own Karen L. Alaniz.
Beyond the Schoolhouse Doors: Fostering a Community of Support
“Missy has never been invited to a birthday party.” Her mother said.
It wasn’t the response I expected. At parent-teacher conferences, I always asked the parent if there was anything they wanted to share with me about their child. Usually the response had something to do with a recent school project that their child had enjoyed or sometimes they’d share concern about their child’s progress in school. But I’d never had a parent offer something so…personal.
“Really?” I asked. “But she has so many friends at school.”
Missy had been my student for two years. Our small self-contained, multi-age classroom was more like a close knit family. Missy had an undiagnosed disability. She’d had all the tests and none of them resulted in a diagnosis. In academic areas, Missy was lacking but in social ones, she exceeded all expectations.
Missy was a perennial optimist who greeted everyone with a contagious smile. She was spunky, reminding others (even the principal) of our classroom rules and the consequences for breaking them. When she walked down the Junior High hallways, she smiled saying “Hi” to everyone and if someone didn’t respond she stopped and said it again. Missy didn’t know the meaning of the word clique; she treated everyone the same, from the jocks to the geeks and everyone in between.
“Even with her challenges,” her mother continued. “Missy’s teachers always reported that she had so many friends. She got along with everyone; it was the one thing she had going for her. But somehow that didn’t translate to friends outside of school. I just never thought that her life would be so…different.”
“In what way?” I asked.
“When her older sister was little,” she said. “Every time I turned around, she was going to a birthday party or a slumber party. And I just thought that’s the way it would be for Missy too. Her whole kindergarten year went by before I realized that she hadn’t been invited to a single party. It was the same in first grade and then second and then I just figured this is the way it is when you have a child with a disability.”
Tears formed in her eyes.
“What can we do about it?” I said thinking aloud.
“Nothing,” She said. “People are just the way they are. I can’t change them. Honestly, before I had Missy, I would have probably done the same thing. I was afraid of people with disabilities.”
“There has to be something we can do. Missy would love going to birthday parties. I can just picture her; all those kids and all that cake.” I said.
Her mother smiled.
“She would love it.” She said.
Before she left, we made a list of all the activities her mother wished her to be included in, all the things her typically developing peers enjoyed.
“I just wish I’d started this earlier, like when Missy was in first or second grade. Now it’s just so…hard.” She said.
And of course, she was right. We talked about what she could do to advocate for Missy. The most difficult part would be talking with parents of Missy’s peers. But as difficult as it was, there was a lot to gain. Missy would gain, not only some fun experiences, but also a group of people, a peer community, to care about her. And her mother would reap the same benefits.
Karen's strategies coming soon to our Blog.
Story IndexDivide and Conquer by Karen L. Alaniz
In our family, we have created many traditions over the years. But the one that is really special to me started when I was in Junior High. I learned how to bake sugar cookies, complete with festive frosting in my home economics class. And since no one in my family baked that kind of cookie, I baked them. And it caught on. Year after year, I’d roll, cut, bake and frost dozens of cookies. When my first child was about three she got to be mommy’s little helper; she learned to use the cookie cutters and how to space the cookies apart just so. But her favorite part was frosting the cookies. After baking them, I’d lay them out on wax paper and set out bowls of red, green and white frosting, along with a myriad of sprinkles to select from. When my second child was old enough, he joined us too. So when my third child, Zachary was born, I had the same dreams for him. Soon he’d join our happy little cookie factory.
But Zachary was different. He was very active and easily distracted. He was impulsive and loud. Zachary was just not cookie-baking material. It saddened me when I realized that he wouldn’t be able to join in on the tradition, but he just couldn’t sit still long enough. As much as he wanted to be a part of it, and as much as I wanted him to be a part of it, an over active child in a small kitchen working on a project that took hours to complete, just didn’t work.
When he was six, Zachary was finally diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), and I realized that if I didn’t figure out ways to adapt, he would never be a part of our family activities. So when Christmas rolled around, I thought carefully about how to adapt our traditions for our very active child. And I started with the sugar cookies.
Taking a cue from the directions on the recipe, I adapted the way we made the cookies. The recipe said that after the dough was mixed, it should be put in the refrigerator for two hours. And that got me to thinking. What if I divided everything up that way? So that Christmas, for the first time, Zachary got to join us in our cookie-baking tradition.
We made the dough one day. The next day we used the cookie cutters to cut out the cookies and we baked them. Then we wrapped them tightly and put them in the freezer. A few weeks later and a few days before Christmas, we took them out and frosted them. Zachary was so excited to be a part of it all. And so was I. When divided up into small steps, not only was Zachary able to participate, but I too enjoyed the holiday tradition more.
Over the years, we have adapted many of our holiday traditions to meet Zachary’s needs. When we have guests over for Christmas, Zachary is too wound up to help much. So now we set the table the night before. He helps lay the tablecloth, set the table, and decorate the center of it. When we get our tree, we take a trip out to a farm to get it, and then we set it up and let it rest for the night. The next night we put the lights on it and the following night, the ornaments. Instead of long drives around town to look at the lights and decorations on houses, we take a few smaller trips. And when we take him shopping, we start in November and he buys one or two presents a trip. The same goes for wrapping; I keep a table set up in an unused room and he wraps a present here and there instead of in one steady and stressful session.
By adapting your holiday traditions, you can bring back the joy of the season. Your active child will enjoy being a part of it and you will have created a treasured memory for both of you. Traditions are the glue that holds a family together. When you honor the tradition, you honor each and every member of your family. And that is what being a family is all about.
On Purpose: Turning Deficits into Assets by Karen L. Alaniz
My husband and I joke that when Zachary is around other people, it is as if he drains all of the energy from each one of them and takes it for himself. He spins around the room, talking a mile-a-minute, his impulsiveness causing a whirlwind of chaos wherever he lands. The more people he is around, the tighter he is wound. So, as you can imagine, holiday get-togethers are beyond stressful. If it were just the holiday meal, Zachary would be ok. But the typical holiday meal begins and ends with a lot of down-time and Zachary doesn’t do down-time very well. Comfortable and relaxed time sharing stories with family and friends are the times that are most difficult for a child with Attention Deficit Hyperactivity Disorder (ADHD).
One thing that we know helps Zachary to stay grounded at times like this is to have a purpose. A few years ago, when I was trying without success to take Zachary to the grocery store without having to leave because he was so out of control, I learned a key lesson. My mother was babysitting him while I worked half-days. One day, I commented about how I would like to take him to the grocery, just one time, and be able to actually get all the things on my list.
“We’ve been doing that for months,” my mother said.
She went on to explain her system. She started by making a list of three to five things she needed from the store. When they arrived at the store, she gave him the task of looking for certain things on the list. With his focus on finding the item, my mother was able to shop with him with very few problems.
My mom had just taught me something; for Zachary to be successful, he needed a purpose. Using my mother’s grocery shopping tips, I adapted for the holidays. Here are a few ideas to keep your challenging child happily busy during holiday get-togethers.
Waiter-for-a-Day – If dinner isn’t at your house, ask for the host’s permission prior to the big day. Take your child to a restaurant so he/she can see what a waiter does. Then practice at home. On the big day, your child can help the host bring food to the table, and seat the guests-pulling their chair out. You may even want to let your child wear something special that day, like a suit for a boy or a dress for a girl; the look is completed by placing a white dishtowel over his/her arm. Whether dessert is served at the dining table or in the comfort of the living room, your child can take orders and then serve each guest. When everyone is finishing up, he can pick up plates and napkins and ask, in his most waiterly voice, “Is there anything more I can get you?”
Memory Keeper – Give your child a camera to use, either yours or a disposable one. Before the dinner, talk to him about getting pictures of the entire day. Starting with guests arriving and ending when they leave, assign your child the task of making sure that the entire day is immortalized forever in living color. You might want to take a trip to the library and check out books on photography. Talk about the difference between posed and candid shots. Before anyone leaves, your child can ask that everyone gather for a group shot. At home, make a scrapbook and give it to the host or a guest of your choice.
Family Historian – Ask the host for permission to set up in a spare room. With a simple tape recorder, your child will be recording family history, one story at a time. Before and after dinner, he will invite guests to share their stories. With the tape recorder sitting close to the guest, he will say, “Tell me about your happiest holiday memory.” When each guest is finished, your child will take a picture of him or her, which can be used in a scrapbook later. At home, you can help him type up the stories on the word processor and pair them with the photo to make a scrapbook of holiday memories.
The holidays can be difficult for a child with ADHD. But this year, with a new purpose, your child will shine. Whether he is the waiter, the memory keeper, or the family historian, he will enjoy playing a part in the holiday festivities. You will be able to sit back and enjoy your family get-togethers and your child’s self-esteem will soar as he/she takes what is often seen as a deficit and makes it an asset.
A Con Straight Out of a Playbook by Gina Gallagher
If you’ve read our book, you know about our theory “No good can come from a school call.” Well, we’re just a few weeks into the school year, and we’ve both proven yet again that our theory is foolproof. To show that we’re in touch with the times, we would, however, like to expand it to the following:
“No good can come from a school call or email.”
Patty experienced this when she logged on to her email and found in the midst of Cialis ads, penis and breast enlargements, and other senseless SPAM, a note from her son Michael’s teacher, informing her that Michael had neglected to complete his 5th grade science homework.
The rational caring mother that she is, Patty approached her son.
“MIKEY, WHY DIDN”T YOU DO YOUR SCIENCE HOMEWORK?”
“Oh, I tried. I even asked Dad, but he couldn’t figure it out.”
“Then why didn’t you ask me?”
“Oh because you looked like you were busy and I didn’t want to bother you,” he said with puppy dog eyes.
This really got me thinking. Unlike my two daughters, my son never seems to worry about school. In fact, I’ve never seen him break a sweat about schoolwork or even utter the words, “I have to study for a test.”
Apparently, I’m not the only mother on the planet who has experienced this problem as I learned the other day when I met a mother who was picking up a child at football practice.
“Come on Jacob,” she called. “It’s time for me to take you home.”
“How old is your son?” I asked her.
“Oh, he’s not my son. He’s our neighbor. My son’s not at practice today. He didn’t do his Math homework, so I told him he couldn’t go to football practice.”
I was in complete admiration at this brilliant, but simple plan.
Then my son ran off the field and shouted, “Come on, Mom. We gotta get home. I have to study.”
I was thrilled that this incident had rubbed off on Michael.
“Great Mike,” I said. “It’s about time you got serious about your school work.”
“School work? Who said anything about school work? The coach gave us plays to study.”
Gina Gallagher
is a freelance copywriter and
owner of a successful marketing communications firm, Gina
Gallagher Communications, which she founded in 1999. A
winner of the Advertising industry’s esteemed Hatch Award,
Gina is the professional choice of many of New England’s
leading businesses.
She is also the creator of House Arrest, a weekly humor
column that appeared in Community Newspapers throughout
Massachusetts 2002 – 2004, which explored weighty and
controversial topics, such as the “Psychosis of Self
Employment,” “Christmas Tree Rage” and “Life with Senior
Parents.”
A graduate of Assumption College in Worcester, MA, Gina
resides in Marlborough, Massachusetts with her husband Mike,
daughters Katie and Emily, dog Max, and countless carpenter
ants.
Gina and her sister Patty Konjoian co-authored the widely popular and extremely humorous book Shut Up About Your Perfect Kid available on Amazon.
Check out their Web site for parents of special and other “imperfect” kids designed by “imperfect” parents.
Time for Change by Karen L. Alaniz
I sat nervously as Zach’s teacher spoke from across the horseshoe-shaped table. She opened the green construction paper folder that held samples of his daily work, special projects and quizzes.
“Zach is very good at math.” She said.
I smiled.
“In fact he finishes his work before anyone else.” She continued. “And when he’s finished, he bothers everyone around him. It’s really become a problem.”
She flipped to the next paper.
“Let’s look at his last social studies test, shall we?” She asked.
But she didn’t wait for an answer.
“He got five wrong on this test.” She said pointing. “And I went over those points numerous times in class. There’s really no reason for him to be doing so poorly.”
She flipped to the next paper.
“This is his art project. He didn’t follow the directions. He was supposed to draw a person, but as you can see, he only drew a head.” She said, and then moved on to the next paper.
Twenty minutes passed quickly as she chattered. I’m pretty sure she never took a breath. Then she looked at her watch, glanced at the clock on the wall and finally she smiled and looked me in the eye for the first time since I’d sat down in the tiny chair. She glanced toward the doorway.
“Hello Mrs. Craig. I’ll be right with you.” She said.
“Mrs. Alaniz, do you have any questions?” She asked as she stood.
I shook my head.
At home that night my husband asked me how conferences went.
“Fine.” I lied.
“What do you mean fine?” he probed. “Did you ask Mrs. Beavy about his reading level?”
I shook my head.
“Did you ask her about that project he brought home last week?” He asked.
I shook my head again.
Truth was, I didn’t get any of my questions answered. It just didn’t seem like the right time. Zach’s teacher was so organized; she had so many things to cover. I knew I had insight to offer about her concerns, but with only twenty minutes allotted for each parent, there simply wasn’t time.
I sat on the sofa with the construction paper folder. On the cover the words, “Parent-Teacher Conferences” were written in black permanent marker. Wait a minute, I thought, parent-teacher. Doesn’t the name imply that there should be some kind of give and take in sharing and conversation? It wasn’t supposed to be just, teacher conferences. So why had I kept quiet? Why didn’t I feel comfortable talking about my own child?
That was the last year that I took a passive role in parent-teacher conferences. Over the next couple of years, I learned that there are some strategies that will help ensure that parent-teacher conferences are a positive experience. And all it takes is a little preparation, a little homework and a big plan for success. Read on to learn how you can do it too.
Be Prepared – Most schools send the report card home prior to conferences. Take the time to look at each mark. As parents of difficult children, our tendency is to look for the low marks. But try hard not to do that. Take every mark and every comment on the report card into account. From letter grades to participation points, each one is a piece of the puzzle; put together right, you will get a snapshot of how your child is doing in school.
Read it Together – Go over the report card with your child. Start off by noticing areas of strength and slowly move to areas of concern. Get out a pencil and paper and ask him about each subject, writing down his comments. When you meet with his teachers, share your child’s comments if appropriate.
Invite Others – Your child doesn’t spend his whole day with one teacher, and his conference shouldn’t be that way either. Ask for his P.E., music, or special education teacher to be there. You might also want the Physical Therapist, Speech Therapist or Occupational Therapist to be invited. Obviously with only fifteen to twenty minutes, you won’t get to hear much from each of them. But you will get a good overall feel for how your child is doing in school.
Be on Time – Your child’s teacher has back-to-back conferences all day long. If you are five minutes late, she won’t be able to simply give you an extra five minutes at the end of your scheduled time. If something happens and you can’t be on time, call and ask to reschedule. The teacher will appreciate the call, and you will get the time your child deserves.
Be an Active Participant – While his teacher probably has a lot to say about your child’s progress or lack-there-of, that doesn’t mean that you shouldn’t speak up. If you have something to add, by all means do it. This is your opportunity to give the teacher a different perspective. Just as hearing how he is doing in school gives you a better overall view of his life, his teacher too can learn from listening to your point of view. Tell her what your child has shared with you. Is he struggling with a particular subject or classmate? Is he ecstatic about the upcoming social studies project? What you have to say is important. Even small details can make a big difference.
Save it for Later – Because time is so limited, don’t start in on a subject that you know will take more than a few minutes to discuss. If your child has just been to the doctor and you want to share the results of the testing, schedule a separate time for that. Remember, this time is primarily for reporting academic success and to a lesser extent social/behavioral issues as they relate to those academics. If you monopolize the time with other things, you won’t get the full benefit of what the teacher has to share with you.
Leave Satisfied – When your time is over, respect the teacher’s time and the time of the parent waiting in the hallway, by leaving promptly. But if you feel the time wasn’t enough, by all means, ask if you can set up another conference time. There is nothing sacred about the actual conference days. You can request a conference at any time. If you have a simple question that can be answered quickly, write it down. For example, if you want to know what educational computer games to buy for your child, just jot down a note and hand it to the teacher on your way out, or better yet-do it by email.
Debrief with your Child – Whether your child attends the conference with you or not, take time to discuss how the conference went. Start with the positive, “You sure are good at math. That’s great.” Then discuss ways your child can improve. “Mrs. Johnson said that if you read for just ten minutes each night, you can raise your grade.” And always end on a positive note.
The purpose of parent-teacher conferences isn’t to make you feel like a child again. The purpose is to lay the foundation for an exchange of information between you and your child’s teacher. With a little homework, it can be a positive experience- for everyone.
Karen L. Alaniz is a freelance writer. She has also written a book, Breaking the Code-A Daughter's Journey. When she isn't writing, she is enjoying life with her three children, two cats, one dog and a few visiting birds. Visit Karen's site Write Now.
Working Nine to Five by Elizabeth
9 p.m. I head up the stairs to enjoy a warm shower and perhaps a few minutes to read my book. Sleep will come easily tonight as it does most nights. I exhaustively pass out. Nicholas, my sleepless child, finally dozes off after six books, two glasses of water, a half-hour of cuddle time and assurances that there are no monsters in the closet or under the bed.
Midnight The howling wind lashes the rain against our bedroom window. The sound awakens me and I wonder if we will soon lose power, a frequent winter occurrence when living in the woods. The silence from a power failure is deafening and the loss of electricity will stop the gentle hum of the refrigerator that soothes my son. I stumble to the bathroom trying not to wake my husband, Joe. I feel an ache creep into my muscles. Sleep only comes again when I concentrate on the rhythmic sound of the rain.
2 a.m. I am not sure which came first, the sound of Joe snoring or the realization that the rain had stopped. I shake my husband, his snoring stutters then he inhales deeply and rolls over. Again I make the pilgrimage to the bathroom and silently thank the gods for stopping the wind. As I lay in bed, I begin to worry about my older son. His grades are not as good as they should be. He’s not applying himself. Do I nag more? Do I let him suffer his own consequences? Do I allow his charming personality to carry him through life without effort? Or do I show him that hard work has its own rewards? Did I pay the credit card bill on time? Is there enough money in that account to cover the check? Is the roof leaking again? What will that cost?
3 a.m. “Mommy, can we get up now?” I hear Nicholas call from the bottom of the stairs. “No, it’s time for sleep.” I scoop up my son and carry him back to bed. “Will you lay down with me?” “For 3 minutes,” I tell Nicholas, not wanting him to depend on me for his middle of the night comfort. I watch as three minutes pass on the clock. Then I kiss him on the forehead and trudge back up the stairs.
5 a.m. My
aching body awakes me. This time I can’t force myself back
to sleep. Instead, I tiptoe downstairs. Resigned to this
early start of another day, I steep a cup of tea and head
for the computer. For now, I feel refreshed from the few
hours of sleep. Total exhaustion will come later.
Story Index
The
World of Mommies by Guest Author Corbin Lewars
My take on
pregnancy and birth (home birth advocate) may have been the
beginning to my feeling of alienation from the world of
mommies. "Mommies" were always the other women I saw at the
park, grocery store or at the zoo. I was just an imposter.
Maybe it is because I don’t have all of the gear to make my
mommy image complete or maybe it is because I seem to miss
what other parents consider to be big issues. Both my
children were four weeks old before they had a name, when it
came time to choose schools for them, I went with the local,
alternative school because it “felt right,” and I have never
bought a baby-gate. Parenting is purely instinctual for me
and I try to never read parenting books. They mess with my
mind, and I am perfectly capable of doing that myself
without the aide of a book.
I also find chatting difficult and this is a must-have skill in order to be a part of the mommy-world. Even when I succeed in my attempt to small talk, I think I confuse the other moms. The human brain wants to categorize people, it is how we understand one another and a big way mothers categorize one another is by the labels "working mom" and "stay-at-home mom." I am both. I work, but I bring my kids with me or work from home. This makes me a working, primary caregiver mommy, which is sort of paradoxical. In fact, a lot of my mothering could be perceived as paradoxical, therefore hard to categorize. When I see the confused or blank expressions come over the other moms as we talk, I imagine the wheels in their brain turning. "Is she an attachment parent? No, she isn’t breastfeeding and keeps talking about how much she loves her weekends away from her child. Is she the serious, intellectual, type of mom? No, look at her trying to ride that kiddie motorcycle. Plus, she doesn’t even know what developmental phase her son is in. Is she the yuppie, overachiever-type? I seriously doubt it. She hasn’t signed her kids up for any enrichment classes and doesn’t seem too concerned about what school they attend. Stay-at-home mommy? No, she seems too happy."
I recently read a hypothesis in Brain, Child magazine that claimed what unites us universally as mothers is our shared worry and concern over our children. That seemed plausible to me, until I thought about what I hear most moms worrying about – school and safety. My husband worries night and day about safety, so I figure we have that covered in our household and don’t spend a lot of time thinking about it. I would have to say in the last month I have probably spent just as much time wondering who decided that all parents have to carry a soiled diaper around with them all day instead of throwing them away in a public facility as I have pondering the safety of my children. I know it isn’t a deep or complicated issue, but I really wonder why we have all bought into this diaper removal scheme as parents and why I continue to forget these bundles of joy in my backpack and/or car until it is much, much too late.
All mothers have concerns, but do we have the same concerns? I have learned that my concerns differ from most other moms I meet, so I started categorizing them into "acceptable concerns to talk about while building sand castles at the park" and "you’ll freak the other mom out, but go ahead and voice this one if you have to." Over the summer I had a fleeting moment while vacationing at Lake Chelan where I actually felt like I fit in. I was able to chat about potty training woes (acceptable concern) and laugh at several "ha-ha aren’t kids funny when they destroy your house" episodes. But then I started in on a monologue about when my neighbor found my keys dangling in the door of my car, where they had been all night long, my concern wasn’t over the possibly stolen car and easily robbed home, it was over the false notion that I had my brain back, I felt the camaraderie fade.
“I was so sure with the sleepless nights, nursing, and pregnancy behind me, that I was really on top of things. I was becoming reacquainted with that long lost friend, short-term memory, but in actuality…”
“But your house could have been robbed! A stranger could have been in your house while you were sleeping,” one of the moms interrupted.
“Sure, but more importantly I’m telling you, I still don’t have my brain back! Five years later and I don’t remember where I left my keys or if I’ve fed the cat in days!” I cried.
“Yeah, but a house being robbed or your car being stolen, I mean that’s a big deal. By the way, where are your kids?”
“Over there on the playground.”
“But you can hardly see them from here.”
“Yeah, but I can hear them.”
She shook her head in disbelief and walked away from me.
I may have learned how to categorize my concerns, but I still am a long way off from remembering to keep the one category to myself.
Corbin Lewars lives in Seattle, WA with her two children and husband, where she continues to find herself alone with her concerns. She is the author of the memoir, Not What I Expected and Swing Set, a sexy mommy-lit book. Her essays can be found in Midwifery Today, Mamaphonic, Stories with Grace, and other literary publications. She is the founder of the zine Reality Mom and can be reached at reality_mom@yahoo.com.
The Gift of Friendship: A Lifesaving Balm for Overwhelmed Parents by Guest Author Victoria Fann
Parenting is tough enough, but parenting a challenging child is sometimes tough beyond measure or even comprehension. When I look back and wonder how I survived some of those unfathomably dark periods of my parenting, I quickly remember: it was my friends--my friends who picked up the phone when I was lying on the floor in a puddle of tears, my friends who did internet searches and sent me lists of resources, my friends who came over with a bottle of wine and listened to me rant. They carried me when I could not walk; they held me when I could not breathe; they distracted me when I could not speak.
Samuel Taylor Coleridge once compared friendship to a sheltering tree. I like that image because it is so precise. A good friend feels exactly like that—a place to seek refuge when the storms of life are raging all around us. Byron says that friendship is love with wings. Another accurate description, because friendship has the ability to lighten your load and lift you off the ground.
I remember one day several years ago, when I was at one of my lowest points in my fight with my son M’s school when the friendship of another parent may have saved my life. I had hit yet another obstacle to securing his IEP and had sat through yet another humiliating meeting in which phrases such as mentally deficient, disabled, and autistic (regardless of the lack of diagnosis) had been batted around the room in reference to my son. I was emotionally spent and wrung out from sobbing and screaming at the air, and I could feel myself teetering dangerously on the edge of wanting to end it all, when my phone rang. It was my younger sister, also the mother of a challenging child (who is now 15), and in many respects my best friend. Only two years younger than me, I had been the strong one many times for her as she recounted horror stories of my nephew repeatedly suffering abuse at the hands of a public school system in North Carolina. From withholding food as punishment to denying him recess and even calling him names, my sister had seen it all, and each time as her heart broke, her disillusionment with the special education system increased.
So on that day when I wasn’t sure how to keep myself going AND fight for my son’s education, it was a godsend to hear her voice, a veteran of these wars, on the other end of the phone. Thank God for caller ID! If I hadn’t seen that it was her calling, I wouldn’t have answered the phone. Quick as lightening, she discerned what I needed and threw out the requisite lifesaver with a very simple sentence: “God, I know exactly how you feel.” And then, “It’s awful isn’t it? Just awful.” And then she proceeded to tell me the latest in her own encounters with the school system, and as I listened, her voice worked it’s magic on me, calming me down, and reminding me again that I was not alone.
As she let me vent full out, I mentioned how I was ready to sue my son’s school. She, too, had considered a lawsuit at one time.
“Do it,” she said. “What have you got to lose?”
“But you have a better case than I do.”
“I know,” she said. “But lawsuits take time and I haven’t got any.” She was a single mom with three kids at home at that time.
“I would, but I don’t know. It will take years to settle and it might not even benefit M by the time it’s all said and done.”
And so it went, until we had shared our mutual unhappiness, and the conversation shifted to another topic. By the time I hung up, I felt whole and human again, something only a friend can do (especially when she’s your sister).
One time, I commented to my sister about this type of reciprocal support and she likened it to a ladder, and pointed out that sometimes she’s the one who has fallen a couple of rungs and needs me to pull her back up and sometimes I’m the one who has fallen and need her to pull me back up. Once I even told her that I felt as if I’d fallen off the ladder completely (this was during the period of my recent divorce), and she responded as if it were no big deal, because that’s what friends or sisters or people who love each other do—pull each other up off the floor of life so we can get moving again.
My sister is not the only person in my life who offers this kind of mutual support. Over the years, I have crossed paths with other parents of challenging children and whether we’ve shared a brief sojourn of a one time meeting or a longer journey of several months or even years, the recognition and comfort we’re able to offer each other never goes unappreciated.
In addition, M always seems to know when I’m receiving or giving this type of support. He actually seems relieved and grateful that there are people in my life who offer me comfort and support. Sometimes when I’m down, he’ll even suggest I pick up the phone and call one of my friends. I know this has had a positive effect on his view of friendship in his own life. Over the years, I watched the bonds with his friends (both male and female) grow and deepen in intensity. This was underscored recently when we had a going away party for M prior to our move across the country. Halfway through the party, our deck was filled with sobbing twelve year olds who were overcome with sadness over the idea that M was leaving.
There is an old Czech proverb about friendship that really captures the essence of this type of bond, “Do not protect yourself by a fence, but rather by your friends.” Our friends not only buoy us up, but they keep the darkness out with their light. They give us hope when there seems to be no more reason to have hope. Christopher Robin’s words to Winnie the Pooh, capture it best, “Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.”
What more could a friend ask for than that?
Victoria Fann is a published writer whose articles and essays have appeared in magazines and newspapers throughout the country. In addition, she contributes to a number of online publications and has her own Blog, Blessed Madness.
Overweight Children: One Mother’s Story by Kay Whittenhauer
My son was a cute baby, a real pork chop, I used to say. As a toddler his profile would sometimes show an adorable rounded belly. Next thing I knew, his height would shoot up and he would thin out again. And so it went, until that time when his belly got round and the growth spurt never happened. I waited. And waited. I finally had to admit that I had a husky first grader. By the time he was in the third grade, at 103 pounds, he weighed more than me.
I was so rattled after my first trip to the husky department that I had to tell everyone about it. It seemed that every relative, co-worker and friend knew some chubby kid who grew into a lean adult. "It's nothing to worry about," they would tell me, "You're over-reacting, as usual." But when it seemed that my son would outgrow (side-ways, that is) his husky-sized pants, I spoke to his pediatrician. She suggested switching from whole milk to 2%, limiting his junk food, and having daily physical activity. She cautioned against an actual "diet", and encouraged using a common sense approach. It was time for me to become pro-active.
The first realization I came to was that school lunches do not include fruits or vegetables. How could that be? I saw them listed right there on the menu. Plus, when I was in school you got a plate with a well-balanced meal on it. Not anymore. As it turns out most kids were throwing the healthy stuff in the garbage. Considering the waste food and money, now the fruit and vegetable of the day are only served when the student requests them. You know how often 7-year-olds beg for green beans, right? The school did have a great policy concerning the Little Debbie treats and ice cream bars that they sold in the lunch line. Only two per day. Yeah, figure out what my kid was eating for lunch every day.
The next big discovery was the amount of junk food that he was eating at the babysitter's house. I used to work until 6:30 pm, so I thought I was blessed to have a sitter who kept him late and fed him dinner. (And, in fact, it was a blessing.) While I often asked what he ate, I mainly heard about the nutritional dinners. It never occurred to me that after he got off the bus he was allowed unlimited amounts of Doritos, Bugles, and Chips Ahoy!
Lastly, we live in a climate that often is not conducive to playing outdoors. Between snow, wind-chill, ice, rain, flood, and mud we end up spending a lot of time indoors. It doesn't matter if it's watching TV, playing video games, reading a book, or playing board games; it's all sedentary. Not exactly breaking-news, but I guess this was my wake-up call to get moving!
The first thing I did was limit the school lunches. I didn't have the heart to take away Taco Tuesday or Pizza Friday. I didn't want my son to feel like he was being punished; instead I wanted him to feel like we were working together towards good health. When we would pack his lunch I would let him make his own food choices. The choices were limited: carrot sticks or celery sticks, for example, but he was receptive to participating. The balance of sometimes bringing lunch and sometimes buying lunch worked out well.
The junk food thing was more challenging. I felt that denying all junk food was unreasonable. Again, this isn't about feeling punished; it's about having a healthy life-style. We agreed that since junk food isn't necessary at all, one serving a day would be plenty. In the beginning, this took quite a bit of planning. The first hurdle was establishing the amount of a serving, which we agreed would be whatever was stated on the package. The second hurdle was planning ahead. For example: You can have cookies at Scouts tonight, or you can have chips in your lunch. After we had clearly defined the limits, sticking to them was easy.
Since we couldn't depend on the weather for outdoor activities, it made sense to join a family-friendly health club. We started swimming (indoors) a few times a week, which my son loved! After all, taking a swim when its 15 degrees out with a foot of snow is fun! He became interested in the treadmill and the stair machine, and would "play" on those occasionally. I was always careful to avoid terms like "exercise" and "work out" and I never pushed him to do anything he didn't want to. The focus was not on losing weight, but on having an active, healthy life-style.
That's the story of how a fourth-grader who was 4'6" and 106 lbs. started the sixth grade at 4'10" and 99 lbs. It didn't take a lot of pushing or prodding, just a few changes in the day-to-day routine that quickly become second-nature. I was surprised (and pleased!) when my son, out-of-the-blue, said to me the other day, "I'm glad I'm not fat anymore."
About Kay: If you ask Kay to describe herself, the first word that pops into her head is "mother". Perhaps "full-time mother/part-time office administrator/aspiring writer" is the best way to describe her. Kay earned a bachelors degree in advertising (1989), and aspired to be a copywriter. But with no job offers and bills to pay, Kay's life took another route.
Aside from raising her son, she is currently employed at her
church. She is active in PTO (Parent Teacher Organization)
and her son's Boy Scout troop. She turned 40 this year and
decided to give writing another try. Her first step was to
become a content producer on
www.associatedcontent.com.
Story Index
Special Report From A Mom Who Cares by Tess
Note: The University of Washington in Seattle is the leading research institution for Fetal Alcohol Spectrum Disorder in the United States.
Every mom needs to get away and refuel. And I, like every mom with a challenging child, need to find opportunities to see the gift in the burden I bear. For me, raising a mentally ill child has been an all-encompassing experience. I knew I needed to overcome my intellectual drought and isolation while learning something new. So I did.
First, I attended a writing conference put on by Fields End for the local writing community. I mingled and learned with others who love to write.
My other stimulating day took place at the annual conference of Families of Russian and Ukrainian Adoptees (FRUA). Because I am driven to writing about parenting our exceedingly complicated Russian son, I consider these two days very welcome gifts.
I have a hunch that my 9-year-old son Peter's brain suffers from fetal alcohol trauma, so during the FRUA conference, I attended the breakout sessions focused on fetal alcohol spectrum disorders. After learning about the latest findings in this area of brain research, I am convinced that my hunch is correct.
What I Learned About Children Impacted by Alcohol
Please understand that I am sharing some of what I learned through the filter of a parent's ears and heart. I am not a scientist or a physician, so please excuse any potential inaccuracies.
The Spectrum
At the Fetal Alcohol Syndrome (FAS) clinic at the University of Washington, the longest running clinic in the United States, I learned that problems caused by exposure to alcohol during pregnancy run, like autism, on a spectrum of impairment. Those affected children most recognizable to the medical community at large are those with FAS, which includes a physical manifestation of the illness. In the year 2000, the very same physician speaking at the conference screened out any possibility of my son having FAS. Since then, a lot of new research has emerged.
Children with Fetal Alcohol Syndrome Disorder (FASD) can have severe to mild impairment. The diagnostic process is so complex that there are not yet consistent diagnostic criteria. The facial features associated with FAS are a thin upper lip, a smooth philtrum (the area of the face between the nose and the upper lip) and small eyes that appear far apart. These features are not present in children with FASD.
Pregnancy
The medical community used to think that all children with this type of brain damage had those identifying features. As it turns out, these facial features show up only in those individuals exposed to excessive alcohol in the 19th to 23rd day of their mother’s pregnancy. This is generally well before most women have any idea that they're pregnant. Though this is indeed one of the worst times in a pregnancy to expose a developing fetus to alcohol, the entire first trimester is a very vulnerable time. In fact, there is no time in a pregnancy when it is entirely safe to drink.
Twins. Though the first trimester is the most detrimental time to drink alcohol, there are some interesting twists. Identical twins harmed by their mother's alcohol consumption during pregnancy always present with the same degree of damage. But fraternal twins born to a mother who drank alcohol during her pregnancy can have completely different responses – one can have full-blown FAS while the other has no identifiable damage. I find this fascinating.
Older Moms. Another puzzling finding is that older women who have had many pregnancies have a higher risk of passing on the effects of FASD than their younger counterparts, even if they drank the same amount of alcohol at the same time in their pregnancies.
Intelligence
Children naturally fall into a range of intelligence levels, from gifted to mentally retarded. Genetically predetermined IQ is a factor in an alcohol-affected child's level of functioning. The level of impact is different from child to child. Current research suggests that FASD lowers a child's IQ significantly more so than FASD. But the end result also varies. Here's how I understand it:
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If child A and child B have the same innate IQ, but child A has FAS, her intellect will be more damaged than that of child B who has FASD.
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If child A has superior intelligence but has FAS, her ultimate abilities may be consistent with a child with a lower IQ who only has FASD.
Behavioral Characteristics
First, I learned that of the approximately 8,000 Russian orphans adopted in the United States each year, about one in ten has FASD and about one in 100 has full-blown FAS. Guess what! The statistics are identical in the United States foster care population.
The frontal lobes of the brain control socialization, anger management, higher cognitive and executive functions and emotional regulation. Children with FASD are impaired in these areas of function. I can see a lot of what I write about here in Peter. I also understand that all children with FASD do not share all characteristics, and they experience them to differing degrees. They include:
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Variability and volatility
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Hyperactivity
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Inability to plan
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Obsessiveness
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Poor anger management
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Poor regulation of emotions
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Poor impulse control
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Difficulty learning
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Difficulty coping with change and transitions
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Challenged by complex thinking
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Tantrums and “bad” behavior
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Functional age is lower than chronological age.
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Difficulty making friends
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Limited awareness of other people's feelings
Another problem area for kids with FASD is an inability to consistently do the "right thing," which often requires a child to do the harder thing rather than the easier. When a child's sense of altruism, self-knowledge, ability to anticipate rewards, and ability to solve problems are impaired, it is harder for them to do the right thing. This often leads to trouble.
Physical Expression
Children with FASD are able to maximize their athletic skills in sports requiring individual strength and endurance, such as swimming or gymnastics. However, team sports are too frustrating – they demand that a child understands rules, can listen and follow directions, and is able to memorize sequences and procedures. Though drawn to athletic activities, their poor balance and coordination keep them from being successful.
Language, Memory, and Visual Small Motor Skills
Children with FASD often show strong memory skills in areas such as recall of visual and kinesthetic patterns as well as verbal information presented through rhythm or song. This makes repetition and cues very important. They often have strong abilities using color, sculpting, or making simple direct copies as they draw.
Impairments Show Up In a Variety of Ways:
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Have impaired auditory sequential memory and memory span
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Can learn vocabulary and comprehend single words but have difficulty understanding complication explanations or discussions out of context
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Have difficulty with integrating and retrieving information and concepts
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Struggle with visual motor skills such as writing, visual-spatial organization, and creative, complex drawing
Academics
Common Strengths:
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Decoding words
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Reading out loud
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Spelling
Common Weaknesses:
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Reading comprehension
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Report writing
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Computation
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Math reasoning
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Organization and study skills
Peter's academic strengths and weaknesses fit this profile. His academic achievement is lower than his IQ of 100 – considered average – predicts.
Personality
Children with FASD are often very likeable, engaging and kind. Only the people engaged with them on a regular basis – teachers, parents, siblings, close friends – are likely to see their poor impulse control, emotional labiality, lack of understanding of personal boundaries and naïve, gullible tendency to become a victim of their peers' misadventures.
For example: if all the kids on the school bus are shooting spitballs at the bus driver, the kid left standing when the bus driver turns around will be the one with FASD.
Obtain Accurate, Helpful Resources
Many parents have difficulty obtaining education, medical and government services for their child with FASD because their difficulties are not always immediately visible. Their likeability can be a good smoke screen for their problems. But it is important to not lose sight of the fact that early intervention is very important. And so is documentation. It is important to record all efforts made to help your child. It is critical to document the brain injury associated with difficulties in childhood in order to obtain public services for your child as they grow into an adult. Unfortunately, many kids with FASD will be unable to live independently or be self-supporting. The challenge is having an adequately documented history in order to obtain government support.
Build on Your Child's Strengths
Finding where your child can be successful and reinforcing those behaviors is very important. Poor self-esteem is common in children with FASD. It is important to find the areas in which each child can succeed in order to prevent and reverse negative feelings about themselves. Like other children, they usually prefer that their classmates see them as bad, rather than as stupid.
Children with FASD are at risk for disrupted school experiences, trouble with the law, mental health problems, abuse of alcohol and other drugs, depression, and homelessness.
Providing structure and support to a child with FASD is important in preventing these and other problems in the future. It is often important to help these children avoid becoming parents themselves, because of their cognitive and emotional inability to care for children.
Find Respite Care
Children like this are difficult to parent and live with. It is important for other family members to be able to take care of themselves and recharge. Arranging respite care for a child, gives the whole family a break from an arduous routine. We were able to find a respite care provider through our therapist and it was a relief for all of us.
My Son, Peter
I feel very discouraged when I see how closely these FASD characteristics fit my son Peter. He is bi-polar (manic-depressive) and has developmental trauma. All of these issues present themselves in similar ways. However, medication can help bi-polar. Therapy can treat developmental trauma. But FASD cannot be fixed. All you can do is set up compensatory mechanisms and skills to “manage” his condition.
How can we engineer Peter's life so at the very least, he is not a danger to himself and others? I know we must soldier on, getting the best help we can find and always believing that it is possible for him to learn these important skills to make up for his very unfair shake of the dice.
Peter is currently at a therapeutic residential school. Adopted from Russia, Peter was with us for almost seven years. But eventually, we ran out of options. We hope we can bring him home.
Our vision
for Peter is that one day he learns a trade from which he
can make a living; has a social security safety net; and if
necessary, is able to be on disability. We hope that his
medication keeps him stable and that he finds an
understanding partner to share his life with. Unless things
change drastically, we hope he will not have children of his
own, because he will find it challenging to take care of
himself.
Story Index
Just His Type by Jeff Stimpson
This note from the occupational therapist came home from school, addressed to "Alex's Mother:"
"I worked with Alex on typing today and I was amazed by Alex's great work. Thus, I just want to share this great story with you. It was Alex's first time working on typing with me. We used a program called, 'Type to Learn Jr.' Alex was able to follow a given direction, able to look at the computer screen to see what letter he was supposed to type, able to scan the keyboard and was able to use both his hands to type each letter. He was able to focus on the work for 20 minutes independently. I thought that this typing program would be great for Alex, thus tried it today, and Alex was amazing. Thus, I will continue to work on typing with him..."
"That's a keeper," said Jill. "Is there a date on it?"
Wow. Typing. Jill and I are to thank for this, I guess, except that we usually tell Alex to leave the home computer alone every time he nears the keyboard - but to be fair, a few months ago he did pry off the spacebar and the N. Alex has often watched Jill and me use the computer at home. But if that had been his only guide he probably never would have typed letters and instead just lost at Freecell. Seeing what letter I'm supposed to type and focusing on the work for 20 minutes independently is also a lot more than I can do on my day job most of the time.
There's no doubt Alex is ready to tackle the writing chores of, incredibly already, third grade. I worked with Alex last spring on printing words one letter at a time, line by line, hoping that by this summer I'd be able to dispense with hand-over-hand and just guide his wrist. I have also always believed that the only way to learn to write is the same way Lincoln wrote "The Gettysburg Address": sit down at the desk, pick up a washable colored marker, and get to work on the paper. That's what Alex and I have been doing, one line at a time, the distinct slashes and curves and dots of one letter at a time.
What I've distrusted about the concept of a computer keyboard to teach writing is that to make an F, you take your index finger and bring it down on a button. To make a G, you take your index finger and bring it down on a button, To make an N...and so forth. But I favor any device or tactic that helps him tell his story; I long to know what's in Alex's head, and what he remembers.
He's always had a thing for letters. He sits silently over books for long times, and often pulls then out and flips through them when he almost, it seems to me, thinks nobody's watching. Maybe it is time for typing.
His concentration is sure improving. The other day he sat for 20 minutes over sets of checkers and chessmen at a table while Jill and I talked to people at a conference (Alex placed the checkers all over the board, then put chessmen on top of each and announced that he was making "birthday cakes"; try it sometime -- you'll see his point). Last night, he was bored after dinner and dug a new jigsaw puzzle out of the closet. He squatted over it for three-quarters of an hour, unmoving and silent save for softly clicking the pieces together. It was a tough puzzle, too -- three German Shepherds and a bag of dog food on a back porch -- but he never let up until he got to the end and discovered that pieces were missing. Alex reminded me of my mother, who had the same discipline to keep her nose down and her eyes on the job.
Last year, a neighbor gave us an old Mac, which we put in the boys' room and haven't touched except to open the music application and find out that our neighbor must have had a big thing for Petula Clark. Last night, I clicked around trying to find the word processing, figuring we could set Alex up with a blank screen and a 24-point font, and let him type away. I couldn't find the word processing. Maybe Alex should help me.
Jeff Stimpson is the author of the Book: Alex - The Fathering of a Preemie
Alex Stimpson's birth, three months premature, starts a 13-month ordeal of poking, prodding, thumping, testing, confinement, and medical torture -- and that's just for his parents, whose first-baby fantasies are trampled under a stampede of doctors, nurses, administrators, and insurance drones who treat them in ways ranging from polite disinterest to contempt. How Alex finally makes it home, and how he and his family are changed by the experience, is the subject of this tough, touching memoir.
Want more of Jeff?
Order his book, go to Amazon.com.
Read more of Jeff’s poignant essays about life with his special and challenging child Alex, visit Jeff’s Life. Hear Jeff's Podcast, Today's Special, on his site.
Read Terri Mauro’s review of Jeff’s book on About.com: Parenting Special Needs.
For My Son by Iain Rooney (Redmond, WA)
For My Son was originally published on The Fathers Network Web site. The Fathers Network, a program of the Kindering Center, is funded by the Office of Children with Special Health Care Needs/Washington State Department of Health, the Kindering Center, and private donations.
Their mission is to celebrate and support fathers and families raising children with special health care needs and developmental disabilities by sharing stories and providing resources. Click here to visit The Fathers Network site.
For My Son
You have to change your lifestyle and stand up to the test
When you’re told your kid is "special" and different from
the rest.
You’ve been dealt a losing hand, you think that life’s not
fair
When you get a diagnosis that the doctors say is rare.
At first there’s trepidation, perhaps a little fear,
We suffer through some sleepless nights and maybe shed a
tear.
When every single milestone he reaches really late
The parents search for answers to justify their fate.
You ask a million questions -- like will he ever walk?
What kind of school will he attend -- and will he learn to
talk?
It hits you like a bombshell when you find your boy is slow,
But while the child develops, the parents also grow.
Initial disappointment can make you really sad
Until you discover that it’s really not that bad.
When you were on the outside you never even knew
How this affects the parents, and what the child goes
through.
Pretty soon you start to learn that no one is to blame,
The last thing you deserve to feel is pity, guilt or shame.
Together we can face up to the challenge to be met
And try to come to terms with all the different goals to
set.
You gain a new perspective that soon will start to show|
As you develop inner strength than no one else could know.
We welcome each accomplishment with overwhelming pride,
A sense of such achievement that just cannot be denied.
So try to be objective, and then you’ll start to see
A lot should be grateful for, I think you would agree.
That next time you feel down at heart, or think your world
is stuck,
Recognize your happiness, cause we’re the ones in luck
Iain, Michele, and Max Rooney live in Kirkland, Washington. Max is almost four, and though his disability is undiagnosed, he is getting closer each day to walking. While he does not speak any words, he is vocal and chatty -- a very happy boy. The Rooney’s have been very supportive of the Kindering Center in Bellevue, Washington where Max attended school from the time he was nine months old.
Three years ago, my 10-year-old son, Patrick, dutifully, but not happily, attended a YMCA camp. Although he was voted Most Honest and Best Sportsman, he hated every minute of every day. He had a litany of complaints: The food was lousy. There were too many boys in the bunkroom. The other boys didn’t know how to swim as well as he did. They didn’t play Frisbee well either. He couldn’t fall asleep; it wasn’t his own, familiar bed. He was too embarrassed to bring his favorite stuffed animal, the one that comforted him as he drifted off to sleep. There was also the dreaded sunscreen Patrick swore he applied each morning. A lie that did not bode well for a child so fair.
The following summer Patrick dug in his
heels. “No! You are not making me go to camp. I HATE
camp,” he shouted at me. And so he stayed home in a
darkened house, refusing to step outside because it was too
hot or too sunny or both. I warned him that his friends
would all be busy and otherwise occupied. They had made
their summer plans a long time ago. So, Patrick's lazy days
of summer stretched out into what felt to him like endless
months of boredom.
His fears ate
away at him as he spent a lot of time alone. He slept less
than usual. He could not think of a single thing to do. He
relied on playing video games, which often escalated his
irritability. Patrick rubbed his mouth excessively when he
faced a difficult video “enemy.” Sores began to form from
all the rubbing so he no longer enjoyed some of his favorite
foods. Spaghetti with tomato sauce or orange juice became
pleasures he would forego because his mouth hurt so badly.
More than once
I suggested a field trip to the park, to the local
swimming hole, out for ice cream. He rejected them all.
“Take him into
the city for a change of pace,” a friend suggested, one who
didn’t know us very well. Patrick avoided the city whenever
possible. The noise, the smells, the crowds. A Trip to the
zoo? What? Was she crazy?
So when his
friend Jon called this year to see if Patrick was interested
in attending Camp Foster, a soccer camp upstate, I
hesitated. On the one hand, Patrick hated even the concept
of an overnight camp. On the other hand, I did not want my
son at home, under foot all summer. Okay, I admit it. I
craved time without him. For eleven years, my every waking
moment seemed to be consumed with Patrick’s doctor
appointments and therapy sessions and dealing with his
issues in general.
At the
thought of Patrick attending camp, I felt both a sense of
relief, and a sense of guilt, because I felt relief. Bad
Mommy Moment! Honestly, I can’t wait for my son to pack his
bags and go. He’ll enjoy his favorite activity – soccer.
But, will he sleep? Will he learn to deal with his
anxieties? But, hate me anyway for sending him away?
Truthfully, that’s exactly what I was doing – sending him
away.
Finally, the
day came. Jon’s mom, Tracy, and I drove the boys to camp.
We were giddy with anticipation of our peaceful week ahead.
After five hours in the car, we arrived at camp – an older
military complex with huge open fields spectacularly
situated near the water and perfect for summer soccer. We
were thrilled. And the boys cheered up – briefly.
For the first
half hour, while Tracy and I checked the boys in, they
played happily with soccer ball, passing it back and forth,
dribbling, then taking shots on goal. We talked cheerfully,
feeling that our escape was near at hand. No guilt –
until we walked into the dormitory. Thirty campers on a
floor – in one big room! Neither boy would like this
situation alone, but since they had each other, they would
be fine. That's what we told ourselves.
“Goodbye. See
you next week,” we said cheerfully, as we waved goodbye.
By week’s end, Tracy had read two
novels, painted three rooms in her house, finished her
college course work, and dined with several friends. I
reacquainted myself with my husband and older son,
completed several started-but-never-finished home projects,
read two books, and took a few walks with friends.
“How do you
think the boys fared?” Tracy asked me as we drove back to
Camp Foster to pick them up. “I’m sure
they had a blast,” I lied. “The weather was perfect,” Tracy
added.
When we
arrived at camp, we knew immediately that the boys did
not have a good time. In fact, the circle under both
boys’ eyes announced to anyone paying attention: these boys
rarely slept over the last week. Patrick looked as if he had
lost some weight; not a good sign given his already slight
frame. Patrick was sunburned because he refused to put on
the sunscreen that I packed knowing full well that he would
never use it. Nope. No happy campers here.
Apparently the
food was lousy. There were no vegetarian options, which
meant that my vegetarian son Patrick ate cereal at almost
every meal. On one occasion, he ate a hot dog, which
instantly made him sick.
He and Jon
spent little time together during the day because they were
on separate teams. But at night they bonded over
their fears! They fed off each other's anxieties and talked
into the night about the many horrible possibilities that
could occur and probably would occur if they
closed their eyes. They simply avoided what they feared by
never sleeping.
On the long
drive home, both boys fell asleep. Their tired, dirty faces
tugged at my heart. I felt sad that they had had such a
terrible time.
“Will you
send him away next year?” Tracy whispered.
I paused
before replying, “You betcha.”
One Mother’s Journey from Heartbreak to Happiness by Martha Monkman
I dropped my son off at a school that said they could help him learn to read and navigate the language world. As he walked off, he was trembling, his gait disjointed and veering away from the teacher who was showing him the 5th grade classroom.
I couldn’t keep my attention focused on anything. I left and went back to the school at 2:45 to pick him up.
I stood in the office watching the kids come loping down the hallway. They all looked so normal, just like kids. Joking, bumping, laughing and spinning. Could these be kids with language disorders? Dyslexic and ADD kids so r-e-l-a-x-e-d getting out of school? Where were the stomachaches, the headaches, the wanting to ESCAPE that my son experienced daily?
I was so on edge. What would I do if this didn’t work? This was my last resort before welfare and homeschooling. Public school didn’t work. Montessori didn’t work. They both kept telling me that he had to “work harder.” Kids at the Montessori school would say “why doesn’t he have to do as much work as me? Is he stupid or something?”
I felt hopeless as I stood there. My ex-husband didn’t believe that our son had any learning disabilities. My relatives said, “Why are you sacrificing your career?” and “he’ll grow out of it” and “you should MAKE the public school educate him.”
Then I saw him at this new school and I just about slid down the wall. He smiled, waved at me, and said “Hi!” Wow. Never in my life did I see him so relaxed and happy outside of our home. The teacher was grinning from ear-to-ear, and she said “he had a good day.” Wow. I just stared at her, almost started crying and whispered ‘Thank you.’
In the car, my son chattered on about the class, the kids. They wanted him to come back and could he start here tomorrow? Would they take him? Did we have enough money “‘cause I bet it was very expensive?” That night he said, “Do you think that I’ll be accepted there?” Oh yeah, honey, not worry.
But, no, we didn’t have enough money. He could start that next fall, but the school offered no scholarships. I was unemployed and the Ex was about six months in arrears for the child support.
That was three years ago. My son went to the school with social interaction difficulties. He was ten years old, reading at the first grade level, anxious about everything in the world, complete with panic attacks.
He now is at grade level or above in all his subjects. He reads at the sixth grade level with a comprehension level of ninth grade.
This school saved my son. They teach reading using the Slingerland method (3 hours a day) which is a neurological-based program.
He still has dyslexia, and knows how to manage it in the “outside” world as I call it. He no longer has panic attacks. I am no longer his protector and savior.
It’s been a logistic battle. He has a 2.5-hour commute each way, each day. He rides a bus, the ferry, another bus. We ride together, but, I wish that he didn’t have such a long commute.
Next year he starts seventh grade at a middle & high school that teaches kids with language disorders. They have a regular school structure, with electives and team sports. My son is especially happy about the hot lunch program, and I am ecstatic that he is happy about something so ‘normal’.
Although my “wild ride” is pretty much over, I know what it is like. I was divorced when my son was 15 months old. I have Storiesfull 24/7 custody as my ex-husband is bi-polar and doesn’t have the ability to parent. We went back to court when my son was nine and his parental rights were changed to supervised visitation. I went back to school and earned my BA in Business Administration and my MBA in finance by the time my son was seven. I planned on a high-powered finance career in Seattle. Instead I worked as a bookkeeper for several years so that I could be close to my son and would have the flexibility on the days that he couldn’t crawl out of bed to attend school or when it was necessary to get him quickly after a panic attack.
I am now working in a professional capacity in Seattle and enjoy it immensely. I am glad that I didn’t trade my son’s sanity and learning ability for a job.
He Ain’t Easy, He’s My Son by Guest Author Corbin
Last night Little Dude coughed until past eleven o’clock at night. These weren’t small, sporadic coughs, they were convulsions. He threw up all of his dinner and lunch and kept on coughing. We gave him some water to drink and he threw that up. We gave him some medicine and he threw that up. We finally gave up, tucked him into bed, and prayed for sleep. Every time I drifted off to sleep, I dreamt of machine guns firing. I’d wake up startled with my heart racing until I realized I wasn’t under fire, it was just Little Dude hacking away again.
One night of this is hellish enough, but Little Dude has had this cough for five months. For five months, we have been woken up by his hacks that reverberate throughout the entire house. For five months, we have run to the bathroom with him while he vomits up phlegm and everything else he has eaten in the last several hours. For five months it has rarely, if ever, been quiet in our house, even at night.
We have gone through two rounds of antibiotics, eight different homeopathic remedies, four different cough syrups, and five visits to two different doctors and nothing seems to make a difference. Medicines seem to have no affect on Little Dude. I have known this since his teething days when baby Tylenol, homeopathic teething gel and tablets, baby Orajel, and even whiskey rubbed on his gums all proved to be useless. But just like then, I choose to forget this, and continue to hope the latest remedy will ease his pain, or at least knock him out, so we can get some sleep.
Little Dude’s cough is symbolic of Little Dude, it is intense, noisy, and it never goes away. On a recent grey, rainy day, I lied on the bed while the kids played. Odo toddled off to the bookshelf and systematically chose book after book, “read” them, and then discarded them. Then she moved on to the shape sorter. All the while, Little Dude sat either next to me or on top of me and “read” to me. “Honey,” I pleaded, “I want to rest for awhile all right? Just read to yourself or to Odo, but I want to have some quiet time.” He was sort of quiet for about ten minutes, but his presence was still greatly felt. Whether he was wiggling in the bed next to me, playing with my hair, or coughing on me while telling me a story, I always knew exactly where he was (on me) and what he was thinking about (animals).
As my friend, Lori said when he was only a few months old, “He feels things deeply and he is going to let you know that.” When Little Dude stubs his toe, bangs his head, or accidentally lands on a book when he jumps off of the bed, he screams. He screams, yells, and usually cries and then needs to tell me all about the injustice he just suffered. Then he wants to sit in my lap for a few minutes and scream some more. God forbid we ever snap at him or he actually really hurts himself, because those instances require at least fifteen minutes of listening and placating. Many more tears are shed and an even longer description of the anguish he experienced is narrated.
It’s as if he doesn’t have any of the filters other people have. Part of this serves him well, because he remembers and notices everything. And I do mean everything. It also makes him a very sweet, sensitive boy who experiences great joy whenever he learns something new or sees someone he loves. But it also makes him susceptible to everything. Loud noises, things that are hot, things that are cold, other people’s moods, all greatly affect Little Dude. If he is within twenty feet of someone with a cold, he will catch it. And he won’t be able to get rid of the cold, or cough, until August, only to catch another one in September.
He leads his life according to a complicated algorithm that only he understands. He wears all of his underwear inside out, because the tags scratch him. He is down to about three shirts that he will wear, because all of the others are either too tight on his neck, have a seam down the arm that bothers him, or are too rough. All of his clothes are hand me down cotton clothes, so they are soft and worn in, but in his eyes, many of them are gunnysacks.
When we go to the zoo to see his beloved animals, he covers his ears whenever any of them make a sound. A mere “moo” from a cow sends Little Dude running while covering his ears and yelling “it’s too loud!” After reading a book once, he will correct me if I falter or skip over a word. He talks to himself or to anyone who will listen all day long and even as he falls asleep. With his eyes open; he has to fall asleep with his eyes open.
Whether he is sensitive, has lots of proclivities, or is borderline obsessive-compulsive, I don’t know. But I do know that nobody but me ever uses these words to describe him. The words others use to describe him are “easy and mellow,” because what they see is a very amenable boy whose favorite activity is sitting down and talking. I see this as well, but I see it while sitting next to Little Dude on the emotional rollercoaster he rides every day. He reserves that seat for me only and every day I ride along with him and listen to his incessant animal chatter. I don’t particularly like rollercoasters, but I endure this daily ride with him because I know if I give him this, the rest of the day will go all that much smoother. But now that the cough has entered the picture, it feels as if I am never going to get off this damn ride.
Corbin Lewars lives in Seattle with her two young children and husband. Her book Home is out for submission and she is busy working on her second novel. Her articles can be found in various publications including Midwifery Today, Stories with Grace, and mamaphonic.com. She is the creator of the zine Reality Mom, which can be found at: www.realitymomzine.blogspot.com
The Heartbreak of Parenting a Special Needs Child by Guest Author Victoria Fann
“We can no longer educate your son.” said the director of M’s school.
I swallowed the rusty metal rage that lay on my tongue. The room stank with nervous silence as she spoke. The group of teachers and special ed experts around the table simply stared, looking silly with their adult bodies crammed into kid-sized chairs.
“You have no right to do this!” I blurted out thinking how this large boisterous woman with her handmade jewelry and large flowing skirts knew nothing about M. She didn’t know about how his father was laid off weeks after he was born or how we had to abandon our newly purchased house or how much trouble he had latching onto my breast because he was born with teeth coming in. No, she wasn’t interested how silky blonde his hair used to be or how buttermilky sweet his breath was or how when I picked him up from pre-school he would hesitate for a moment and then ask a group of children “Who wants a hug?”
Now nine, M’s behavior, his fidgety restlessness, his wandering creative mind, his noisy disruptions in the classroom had gotten on the nerves of his teacher. His appeal to the director had worked; they were giving M the boot.
Let them try.
“I’d like to know…” I began, lingering a little, “…how you sleep at night after inflicting this kind of pain on children and their families?”
She flinched. I took this as a sign, an invitation to continue. I told her that it would be up to her to tell my son that she wanted him to leave the school he loved and looked forward to going to, and that she would have to be with him for the weeks and months it would take for him to mourn the loss of his teachers and his friends, and that she would have to pay for counseling out of her own pocket to help him through this, because I refused to be the one to do it.
My eyes were blinded by tears, and I was shaking badly. The venom inside of me had turned to a sour soup. I ran from the room. Students and teachers in the hallways watched me as I ran past, their eyes searching. My husband tailed me, hampered by the mounds of paper, books and notebooks we brought along.
Later a friend called me to tell me her daughter saw me crying at school, and how it upset her. She asked me if everything was okay. I told her no, but that I would explain more in person.
The heartbreak of having a special needs child is akin to having a twenty pound weight on your heart all the time. There are times that you feel you can’t go on. That your body has suddenly become too heavy and the world has somehow gotten too big. The unfairness of life rears its ugliness daily, sometimes several times a day. My son has been called “fat”, “stupid”, and “a girl” by other boys. Kids will be kids. They somehow need to notice each other’s differences, how they are better, how they measure up. In that process someone, usually a kid who is overweight or slow at learning or non-athletic (my son is all of those), has to be at the bottom. In order for there to be winners, someone has to lose.
What is also disturbing is how little parents of "normal" children are aware of what the rest of us are going through. They judge our children as incorrigible rascals who need better discipline, and they wish our children would disappear and stop demanding their children’s teachers’ attention. I even heard one parent call a child who was behaving badly in his daughter’s classroom “psycho”. He was referring to a first grader. What could I say to help him to understand the inability some of these kids have to control their impulses? His point while valid, was harsh and ignorant. But why should he have to think about it? His daughter is “normal”.
Pain and disappointment are constant companions of parents who have to hear their children described as mentally deficient or a disruption in the classroom. We kiss the ground when they are invited to a birthday party. We are happy with small achievements in school. Any sign of learning is a godsend.
Back to my son’s school. We ended up in mediation, basically a four hour meeting with seven people on their side and just two of us on ours. My son received a “stay put” which means he won’t be leaving his school anytime soon. The process was intense, grueling, and humiliating, and it is far from over. What I learned is that parents need to become experts on special education law. It’s practically a full time job. While the law is in parents favor, the odds are stacked against you unless you’re willing to commit an inhuman amount of time and effort into defending your child’s rights.
It’s all relative. I’ve seen children with far greater challenges than my son. I've heard parents talking about children that can’t walk or talk or who spend all day having seizures. My heart goes out to them and their stories make me count my blessings. It could be worse, I tell myself, when I receive yet another complaint from a teacher or another evaluation that says how little improvement they see. It could also be a hell of a lot better.
(Author's Note: This piece was written three years ago. My son is now twelve and is still attending the same school. While the situation has improved, the challenges continue and my family is currently looking for another school for him. In a perfect world, learning differences would be celebrated, rather than labeled and judged. An uphill battle, to be sure, but one well worth fighting.)
Victoria Fann’s articles and essays have appeared in
numerous magazines and newspapers throughout the country
including Woman of Power, KIDstoday, Raising Children, The
Daily Record, The Star Ledger and Newsweek, among others.
Victoria has her own Web site:
www.blessedmadness.com/
True Confessions: The Short Road from PBS to Anger Management by Elizabeth
It all started with Barney. Each weekday morning, I plunked my small son in front of the TV, and while he chattered at the image of a purple dinosaur on the screen, I dressed for work. Often this god-from-public television allowed me enough time to add a scarf or a piece of jewelry before Max became restless, and my ability to accessorize cut short.
At the end of the day, Max watched Teenage Mutant Ninja Turtles and Power Rangers. Together these superheroes provided an hour of peace -- time enough to open the mail, return phone calls, pour a glass of wine, and start dinner. Before bed, we cuddled on the sofa to watch a video. Disney’s Aladdin --for the 632nd time – I kid you not.
During these early years, I routinely searched catalogs looking for toys guaranteed to occupy my son’s time for hours. Occasionally a toy sounded so promising that I had the item shipped Federal Express. I can safely say that I spent the first six years of my son’s life looking for toys and activities that provided entertainment for extended periods.
Then the Game Boy was introduced into our home. Our pediatrician actually recommended the toy as a way for Max to decompress at the end of the day. The game was portable and offered an alternative to hiding under the table when we went out to dinner. “This should take his mind off his anxieties,” the doctor suggested.
At first, I felt relief. Finally, the goddess of struggling mothers granted my wish. We found something that kept Max busy for hours! I marveled at his ability to concentrate. Before long, I realized this toy was a mistake.
My first clue was the change in Max’s behavior when he played his GameBoy. He could not put it down. It became an obsession, and even when I gave him a two-minute warning, the game itself did not allow for easy exit. First the game had to be won, then saved, all of which could take ten minutes or more. What bothered me most was my son’s wild-eyed look while playing.
This portable contraption gave way to video games. We banned X-box, but computer games offered as much excitement and sometimes even better graphics. While I hated the “Mr. Hyde” my son became when he played on the computer, I enjoyed the peace. Sadly, the quiet was short-lived. I realized that Max’s behavior after an hour killing aliens made me wish I had never said “yes” to screen time, the quiet shattered by his protest and inability to “step away form the computer.”
Tension grew within our household. My husband’s anger over the fact that he could not ask our son a simple question while he was on the computer cancelled out any positive time I enjoyed while my son was “plugged in.” To ease hostilities, the computer became a “weekend only” event, but every Saturday morning begins with “May I have my computer time now?” So much for “good morning.”
As a mother, I want to give my son what offers him pleasure, especially after a long week, but I do not like the agitated boy he becomes. If I reward him with screen time, is that really a reward? Is the computer merely a babysitter -- one I don’t pay directly but I pay for in the long run?
My daughter has enough troubles; she doesn't need the media too! By Carmela (Denver, CO)
My daughter Becky is seventeen years old. She is spending four months at an out-of-state treatment center for teens with eating disorders. I miss her and I am glad she is away. Now she is in the hands of experts, ushering her toward wellness and giving me a break from constant worry and vigilance.
I am tucked into my favorite corner at the bakery, eating early morning toast and the perfect latte – lots of foam. I am doing my daily writing before I move on to my job as a landscape gardener. Right near me are two impeccably dressed women talking about a girl that goes to Becky's high school. The girl is painfully thin and clearly needs treatment herself. She has that weary, detached look in her eyes, the look that comes from slowly starving yourself to death.
Rather than expressing their concern for this girl, the two women – who I recognize from Parent Night at school – decide that she is "very stupid" to not eat and that her illness must be caused by very demanding parents. Since the girl's parents have a lot of money, they undoubtedly must have high standards that she just can't live up to. They must constantly nag her about going to Harvard or Yale.
Is this what they would say about my daughter (except for the lots of money part)? That she is stupid for not eating and I am a prison-worthy mother who drives my child to do more than her best?
Many things cause a girl or woman to starve herself and think she is fat after losing 30 percent of her body weight (even if she started out thin). One factor can be a drive for an illusive perfection, encouraged by parents or not. But there is always more. Girls with eating disorders, because of events in their lives and/or their own emotional make-up, experience self-blame, shame, compulsivity, and lots of fear. For my daughter, controlling what she eats is a way to harness her emotional uncontrollability. She is clearly in a world of hurt. Becky's dad died when she was 7-years-old. A reckless classmate beat Becky up on her 14th birthday. She feels like an oddity at school because she prefers visiting the aquarium to attending pot parties. And she has never been asked to a school dance.
Many people blame the media for our society's eating disorder epidemic, a too simplistic cause by itself. However, Becky does have friends who think that the models in Vogue or Seventeen are the ultimate American standard of beauty. Our young people are bombarded with images everywhere – TV, magazines, billboards. Their female heroes are painfully thin or trying to be. Has any woman on "Friends" NOT been thin? Is the Internet not pebbled with weight loss ads? We need movies like "Real Women Have Curves" as an antidote to our fat-phobia. A sad reason for a wonderful movie.
Through the media, the make-up industry tells our young girls that strong deodorant and several ounces of goo on their faces, eyes, and hair will make them beautiful enough to get the guy. The obvious, superficial message is "You can be beautiful if you use these products." But the subtle, more devastating message is "You, the essential you, is not good enough." The magazine racks, often by the checkout counter in the, duh, grocery store, contribute their crazy-making covers to bolster the curse of fat-phobia. My personal favorites are the covers with incompatible, contradictory story leads: "Lose 15 pounds in 14 days," next to "Make this yummy, incredibly rich chocolate cake in just 20 minutes." EAT FAT or DIET? Which is it?!
I will take responsibility for whatever actions of mine contributed to my daughter's illness; I will support all her efforts to get well. But I won't take the rap for her 5th grade soccer coach who called her "Miss chubbykins" or for the waifs in the magazines, TV, and movies I unsuccessfully try to protect her from. I won’t believe she is stupid because she has a mental illness. I will sit here each morning, drinking my coffee, believing that at some point in her life, Becky will love herself enough to manage her world without the self-destructive crutch of an eating disorder.
My Brother. My Enemy. My Friend. By Katherine
“Yeah, I’m upset.” I hear my older son say. I peek into his room. He’s talking on the phone, pacing the floor, fingering a business card. “You said to call you when I was really fed up. Well, I’m really fed up. Why does he get all the attention? Why does my Mom spend all her time with him? She’s too tired to do anything with me. She can’t even think long enough to help with my math homework.”
Sean’s voice becomes more agitated, more urgent. “Then tonight he throws a fit because I beat him at basketball. He yells at me. He screams. I don’t want to play with him anymore. But Mom says I have to understand him. I don’t want to understand him. I want him to act NORMAL."
I don’t need to see the card he’s holding to know that Sean called his brother’s therapist, Ben, who told him after one of our family sessions, “Call anytime you need to talk. This isn’t just about your brother.”
But in reality, it is all about his brother Joe needs constant attention. His anxieties derail every family outing. Sean is usually the perfect child, the one with no issues. He plays well with others, never misses school. He possesses maturity beyond his years. Skilled at dodging Joe’s verbal bullets, Sean adeptly negotiates disagreements among his peers. His compassion for others comes through in his social activities.
“He would not be who he is without the experience of being Joe’s brother,” my friend Nan tells me, when I wonder about the impact of Joe’s condition on Sean. “He’s one of the most tolerant teenagers I’ve ever met,” she goes on to say.
My thoughts come back to Sean’s phone call to the therapist who is presumably giving him some sound advice for dealing with his brother. “Yeah, I understand,” Sean says with resignation in his voice. “It’s just that sometimes I think my whole family is close to breaking. And there’s another problem. I get embarrassed when my friends are over and Joe acts up. He swears at me. He hits and kicks me. It’s ugly and embarrassing and if I hit him back, I’m the one who gets in trouble because 'I’m older and should know better.' So here’s the bottom line Ben. I am tired of being abused by my brother, tired of being embarrassed, and I’m jealous of the time my parents spend with him.” There’s a long pause and then, “Yeah, I’ll think about what you said. Okay, I promise to call you again tomorrow.”
After Sean hangs up, I step into his room. In that moment I decide to let Sean know I heard his conversation with Ben. “Was he helpful?” A little startled he replies, “Kinda. Said I should walk away when Joe starts hitting me or swearing at me. Said I could help him help Joe by writing down what triggers Joe’s anger. I guess that will help.” Sean begins to make his bed. I stop his hands as he pulls the bedcovers forward. I don’t know what to say to make it better. I hug him, tell him how much I love him, tell him how much I appreciate how helpful and positive he is, knowing full well that these are probably the wrong things to say and that I am putting even more pressure on him. I can only hope that my friend Nan is right. Sean will grow into a caring, compassionate young man – thanks to his brother.
Who Knew? By Rebecca G. (Pendleton, OR)
I hope when you finish reading my story you won't think I've raised my kids with my head in the sand. On the contrary, I thought I always had my eyes wide open. I've just learned that sometimes my peripheral vision isn't so hot.
Yesterday, my husband, Doug and I arrived home from family week at the California alcohol treatment center where our 17-year-old daughter, Traci, has been living for the past two months. She's wrestling with her demons and hopefully embracing sobriety. This has been a very painful slide for her and has scared Doug and me out of our wits. We always saw our son, Carl, as our troubled and troubling child. Traci's problems are a painful shock.
During our second family session last week, it became obvious that before our arrival, Traci's therapist helped her find the courage to confront us. And that she did! While she talked, I watched different emotions fighting it out in her face – guilt for yelling at us, anger for what she'd been through, and relief that she was finally telling us feelings she's kept bottled up for so long. Our family went through two boxes of Kleenex by the end of the two-hour session. Doug and I learned some things that broke our hearts and others that enraged us. For starters, right before Traci turned 14, her trusted math tutor – a college boy she called "Mr. Dreamboat" behind his back – raped her, then suddenly quit coming to the house. I never knew why he stopped tutoring Traci, but that's not the point anymore. Doug was so angry, he wanted to find Mr. Dreamboat and beat him senseless. Sitting there, I succumbed to a wave of grief – I had no idea my child had been so hurt, so long ago.
Traci's rape was the beginning of her spiral into quiet, self-destructive behavior. First, she drank at parties we thought were supervised by conscientious parents. Then she drank with small groups of friends, and finally, even before school. We had no idea until her guidance counselor called to tell us Traci showed up at school that morning smelling like beer and too drunk to walk straight.
During our family session, Traci told us that, even before the rape, she felt "invisible." "Transparent" she said, in a world that demanded she be noticeable, outstanding, popular. The pressure at school was intense. We thought she was happy; she had lots of friends, played varsity soccer, had good grades. But she said she felt like a ghost. She said drinking seemed to help her feel better.
While Traci talked and sobbed, my heart ached (and still does) and my brain kept screaming, "WHY?" Why did she feel invisible all these years? We've always told Traci how much we love her, what a good sister she is, how we appreciate her patience with her brother, Carl. When I finally said these words out loud, I got my answer. "You SAID those things," she yelled, "but you didn't SHOW it." Ouch!
Traci has always been pretty calm, but during that session she showed a fierceness I didn't know she had in her. She described our family from her perspective: "When I was in fifth grade, I wanted to go to soccer practice after school, but instead I spent those boring afternoons in family therapy listening to you and Carl shout at each other! At home, I watched you rant and cry when he came home at 3 a.m. stoned and stinking like weed." Listening to Traci, I felt nailed into my chair.
"The week Carl got busted for cocaine possession?" she screamed. " I felt terrified and lost. You spent two days depressed in your room and Daddy was away, of course. Our house was like a freakin' ghost town."
Traci railed at Doug for being away from home so much. She accused him of hiding in the garage with his projects whenever there was conflict in the house. Which he did. I can't fault her – or Carl for that matter – for finding Doug emotionally unavailable.
"I felt like I was in an emotional straightjacket," she sobbed. "I couldn't ask for much or misbehave, or tell you how resentful I was of the time and energy you spent on Carl." I knew that this was true and had been since Carl was little. "I couldn't upset you by telling you all this," she went on. " So I just faded into the background. By the time I was 14 I felt like I had just disappeared. It was a really scary feeling."
All I can say now is "Ouch!" I thought I was being a good, attentive mom to both my kids. Sure, Carl needed my attention, A LOT, and I felt consumed by my fear, embarrassment, and rage. He just couldn't get through a day without causing some kind of hailstorm. I felt helpless - I couldn't contain his behavior or sooth his intense moods. Carl's diagnosis of "Oppositional Disorder" at 8 years old, helped us understand him better, but the challenges continued. I felt awful when I couldn't buy Traci a bike for her 11th birthday because all our money went to Carl's treatment. Doug missed 80 percent of her soccer games because he was out of town, and when he was home, he did retreat into the garage. getting away from Carl and his aggressiveness. I needed Doug to be more of a partner, but clearly, he wasn't one.
It feels good to write all this down. To get it out, while I sit near the fireplace comforting myself with warm tea. I have been feeling so icky, for lack of a better word, and guilty for so long. I feel such sadness for my daughter and for the lost wisdom of hindsight. Who doesn't want to turn the clock back and give their kid a better chance? But what would I have done differently? It's so hard to answer and it doesn't mean much now anyway. I can only go on from here. But I hurt, knowing I might have spared Traci this heartache if I had known and understood more at the time. I think that if I had taken better care of myself, and not been so overwhelmed by Carl, perhaps Traci would have felt safer expressing her feelings and telling us when painful things happened. Maybe if I had confronted Doug about his emotional absence and refused to take on all our troubles myself, life would have been easier for all of us.
My poor girl! For most of her life, I just didn't have more to give her, no matter how much I tried. She was quiet and seemed so patient and well balanced, whatever that means. All the kid problems in the family seemed to be Carl's. So much for motherly intuition – I missed the "Caution" signs until Traci made me see how my intuition about her life was somehow "Out of Order." I'm glad for the wake-up call.
It's good Doug and I are forced to really look at both our children in a new way. They are still our kids. There is still time to not let Carl monopolize our attention and to help Traci feel like more of a presence in our lives. Clearly, Doug and I have some rounds to go together too. I'm so glad your website is around to hear my story. It really helps. Now, I'm going to write a long overdue letter to my daughter.
Love Among the Ruins By Marianne
Whiskers the Rat died today. Cause of death: old age. In rat years, he was 91-years-old. My son, Jake, took his pet’s death very hard after filling the rat’s final two days with comfort and cuddles. Tears occasionally trailed down Jake’s cheeks as he prepared for the inevitable, but when death finally overcame the aging rat, Jake could hold back no longer. He sobbed as our entire family gathered around him for a final good-bye at Whisker’s backyard gravesite.
For some children, the story would end there. The rat all but forgotten the next morning. But for Jake, the next day brought an even greater sense of loss. He was unable to function or go to school. Depressed, he pulled the covers over his head and went back to sleep, prompting me to say to my husband, “Tell me again. Why do we subject our son to this kind of heartbreak? Oh yeah, pet therapy. Teach him about love and loss.”
As Jake’s mother I almost daily feel my own sense of love, loss, and exhaustion, juggling Jake’s challenges with the energy needed to maintain a happy marriage. When I use my store of patience with my son, there is none left for my husband who often does not understand the inner-conflict our son deals with every day. Sometimes neither do I. My husband wants to fix Jake, help him any way he can to overcome his problems – now! Sometimes so do I.
Some nights my husband offers me comfort and cuddles. How strong my love is for him when, after a difficult day, he holds me close! “I love you,” he adds, conquering my sense of defeat. But last week, my husband said something that moved me even more than, “I love you.” Another simple phrase made me feel stronger, more loved, and better able to deal with life’s challenges. What did he say, you ask?
He pulled me to his chest, stroked my hair, kissed the top of my head, and said: “Honey, I don’t know how you do it.”
New Beginnings: Appreciating Our First Circle by Tess
Recently I placed an ad for a mentor for my ADHD, RAD, anxious, mood disordered 8-year-old Russian son. After years of visualizing, networking, praying and asking for the right person to help my son, I was fed up. It was time to put my former career in a personnel agency to work.... hence the ad.
When an inventor called yesterday in response to the ad, I jumped for joy! I had the prickle in the back of my neck that I get when I KNOW something – this was the guy. I was sure. Then we talked. This first person to call had a monotone voice that sounded good for putting someone to sleep. The next had just moved to town and wondered if the “position” was still open. Position? Just the fact that he called it that bugged me. The “Inventor” who finally called never reads the want ads and doesn’t need a job. It was pure coincidence that he even saw the piece. This man is the youngish Grandfather I visualized in my dreams. In the few words I put in the ad, the Inventor recognized a younger version of himself. He remembered his own jealousy when his uncle built his cousin a workbench. He understood how Alex, my adopted son, could hunger to watch the dishwasher repairman, a carpenter, auto-mechanic, stage technician or any construction project. The Inventor said to me, “We would need a budget for materials and supplies to build a workbench for Alex.” I was thrilled!
Continuing my phone conversation with the Inventor, I told him a bit of Alex’s story. Halleluiah if the Inventor’s children were not adopted too. He understood that Alex was made of different stuff from me. My son actually likes jigsaw puzzles. I would rather vacuum. My husband is not interested in setting up a workbench or working on the car on a Saturday morning. In short, Alex needed someone that wasn’t us. He was not good at making friends his own age. He could not be unsupervised for more than five minutes because of his intense curiosity about how things work and his completely undeveloped frontal cortex (the self manager of the brain). This new relationship was going to be great.
The Inventor became part of our First Circle
The concept of First Circle for us began some years ago when my husband and I took a class called the “Wisdom Course.” One exercise was to make a list of people in your First Circle. These are not your best friends or extended family members but the people that you interact with on a daily or weekly basis, such as your grocery checker, neighbor, or teacher, in this case, the Inventor. Your second circle then was the first circle of your first circle. We were asked what our relationships were like with our first circle and what we knew of our first circle’s first circle.
This assignment triggered an awareness of how my first circle is the result of being the mother of this confounding, charming, aggravating, intelligent, hopeless yet hopeful little boy. I talk with his teacher and or his paraprofessional on a daily basis. I have a whole new group of friends, other moms of difficult kids. Our family has worked with case aids through Catholic Community Services ever since Alex was released from Fairfax Psychiatric Hospital. We have his therapist, psychiatrist, hypnotherapist, homeopathic physician, neurologist, and others that we see and talk with frequently and who help guide our daily lives.
But the people who amaze me the most are those that offer respite care for Alex. They are so different from our friends, who for the most part, are successful professionals. They are educated world travelers. They solve problems related to ecological sustainability, global politics, and avian bird flu. Our friends however, like us, do not extend themselves the way that people offering respite do. They are my new heroes.
An example is Carole. She had a Down syndrome child at age 19 and was told she could have no more children. Did she feel sorry for herself? NO. She adopted two more Down babies and offers respite care to other moms who need a break. She is so good at providing the structure and organization needed that sometimes I feel her common sense is more valuable than any Ph.D.
Another is Janet. She had six children and when most of them were grown, she adopted a foster child who was brain damaged from having been thrown against a wall by his birth parents. She also had three other foster children ranging in age from 5 years old to a one-month-old baby who was addicted to crack. She said that if CPS did not find a family to adopt them as a group, she would, as they should stay together because all they had was each other. Joyce took Alex for a weekend and said that she would be willing to take him one weekend a month to help me.
The Case Aide that has been in my first circle since early February comes each morning from 7 to 9 a.m.. She was a Mormon raised in Utah who ran away from home at 13. At 17 she married and divorced. Now in her 30s, she is happily married. She and her husband do not have any children of their own. They choose to take in the most difficult foster kids, boys who are about to turn 18 and “age out” of the system and who have failed multiple placements. The Case Aid and her husband take these kids that nobody wants (juvenile delinquent boys from age 15 to 18), and give them another opportunity to turn their lives around before they age out of the system.
I am humbled by the people I meet, my new first circle. It is a world I knew nothing of firsthand. It is a lifestyle that I know none of my long-standing friends could even dream of. These are new friends my family never would have met. I realize that I am grateful, blessed and forever changed to know this world of people. It never would have happened without this one furious, curious little Russian named Alex.
Tess recommends:
Creating
Capacity for Attachment: Dyadic Developmental Psychotherapy in
the Treatment of Trauma-Attachment Disorders (Paperback)
by
Deborah Shell,
Art Becker-Weidman
9 p.m.
I unplug the Christmas tree lights as I head up the stairs to enjoy a warm shower and perhaps a few minutes to read my book. Sleep will come easily tonight as it does most nights. Exhausted I pass out. Nicholas, my sleepless child, finally dozes off after six books, two glasses of water, a half-hour of cuddle time and assurances that there are no monsters in the closet or under the bed.
Midnight
The howling wind lashes the rain against our bedroom window. The sound awakens me, and I wonder if we will soon lose power, a frequent winter occurrence when living in the woods. The silence from a power failure is deafening, and the loss of electricity will stop the gentle hum of the refrigerator that soothes my son. I stumble to the bathroom trying not to wake my husband, Joe. I feel an ache creep into my muscles. Sleep only comes again when I concentrate on the rhythmic sound of the rain.
2 a.m.
I am not sure which came first, the sound of Joe snoring or the realization that the rain had stopped. I shake my husband, his snoring stutters then he inhales deeply and rolls over. Again I make the pilgrimage to the bathroom and silently thank the gods for stopping the wind. As I lay in bed, I begin to worry about my older son. His grades are not as good as they should be. He’s not applying himself. Do I nag more? Do I let him suffer his own consequences? Do I allow his charming personality to carry him through life without effort? Or do I show him that hard work has its own rewards? Did I pay the credit card bill on time? Is there enough money in that account to cover the check? Is the roof leaking again? What will that cost?
3 a.m.
“Mommy, can we get up now?” I hear Nicholas call from the bottom of the stairs. “No, it’s time for sleep.” I scoop up my son and carry him back to bed. “Will you lay down with me?” “For three minutes,” I tell Nicholas, not wanting him to depend on me for his middle of the night comfort. I watch as three minutes pass on the clock. Then I kiss him on the forehead and trudge back up the stairs.
5 a.m.
My aching body awakes me. This time I won’t force myself back to sleep. Instead, I tiptoe downstairs. Resigned to this early start of another day, I steep a cup of tea and head for the computer. As the other members of my household continue to sleep, I plug in the Christmas tree lights and begin writing my morning thoughts.
A Short Story Starring Nicholas and His Mom, Sarah
“Mommy, you are not going to buy the pink coat are you?” 10-year-old Nicholas asks, swallowing hard.
“Why, yes, I thought I would. With all the boy energy in our house, I’d like to add a little pink to my life” Sarah tells him. Nicholas begins to tremble, unable to catch his breath. “You can’t do that! You have to get the black one. You always wear black. Not pink.”
“It’s okay, honey. It’s just a coat.”
“But you just can’t. You can’t.” Nicholas runs out of the store sobbing. Sarah finds her son huddled in a puddle of tears. Still shaking, he repeats his plea, “Mommy, please don’t buy the pink coat.” Sarah feels her sense of choice and spontaneity fade right there on the crowded city sidewalk. .
Half an hour later, however, Sarah buys the coat she wants—the pink one. But as she eyes Nicholas, still crying on the way home, Sarah begins second-guessing herself. Did she make the right decision? She understands that Nicholas has an anxiety disorder and needs to live in a predictable world. Unexpected change drives him, like a ride on the Thunderbolt, from calm to chaos in seconds flat. “Thank goodness my mothers’ group meets this week,” she mutters, with an audible sigh.
Back home, and for the next three days, Nicholas and Sarah ride out his depression. On the second day, feeling annoyed and a little guilty about his unhappiness, Sarah tells the story of the pink coat to her mothers’ support group. Here she experiences the wisdom of mothers with equally difficult kids. These mothers appreciate her pleasure at buying what she wanted and the pain of knowing how deeply it upset her son. They help Sarah realize once again that Nicholas’s anxiety issues cannot drive all the decisions in her life. As usual, the group affords her the time and opportunity to vent her frustration, de-fog her vision, and better grasp what she can and cannot control in her life.
Joan’s Story: Turning Misery Into Hope
After two years of grueling infertility treatments, Joan, now 40, was finally about to become a mother. Months of gut-wrenching disappointment and an intense longing to hold a baby of her own made this pregnancy even more precious. She and her husband, Eric, were thrilled and happily anticipated both their baby and finding out first hand what parenting was all about. When Neil finally arrived, Joan and Eric believed it was the beginning of a wonderful family life together.
But from the day they brought their baby home, Joan had an uneasy feeling that something was wrong. Very quickly, Neil’s intense screams replaced Joan and Eric’s glow of new parenthood. They constantly hovered over their baby, frantically trying to understand his needs. Neil would startle and stiffen at the slightest movement. When Joan held him and cooed softly in his ear, he would spit up, arch his back, and soil his diaper. Neither Joan nor Eric could soothe or quiet their fragile baby. Joan’s dream of a happy and healthy baby shattered and her anxiety quickly turned to despair.
Each day was a nightmare of exhaustion as they eagerly sought ways to nurture their baby and make sense of his unhappiness. For months, his gut-wrenching cries persisted for long periods of time with no logical explanation. Joan and Eric paced the floor for hours in a perpetual state of crisis, sleep deprived and mentally frazzled. Eric went to work wearing his stethoscope and dark circles under his eyes. Joan felt more vulnerable and alone than she had in her entire life. She vacillated between inconsolable grief and hyper-vigilance. Exhausted, with red eyes and a heavy heart, she spent hours staring at Neil, desperately wanting him to give her the key to unlock his mystery. His piercing screams left Eric and Joan sure he was in terrible pain, but nobody could identify the source.
Joan began observing and recording Neil's sleep and waking behaviors, feeding and elimination patterns, and emotional states, hoping for clues to his unhappiness. She read every book and asked everyone she knew for strategies they had found helpful with their babies.
Eric and Joan knew that Neil was not adapting to his new world, but why? Utterly confused, they took him to well-meaning pediatricians, asking, “WHAT IS WRONG WITH OUR BABY?” They clung to any reassurance that nothing was medically wrong with Neil, but their challenges and anxious questions persisted.
As their son developed, his intensity, energy, and emotions grew, as did his parents’ feelings of inadequacy. Everyday experiences—trips in the car, a gentle stroll around the grocery store—overloaded Neil’s ability to cope. In desperation, he screamed at the top of his lungs, flung himself on the floor, or dashed for the exit. Joan tried every parenting strategy published on soothing, disciplining, and coping but nothing worked for very long. She was constantly bewildered by Neil’s behavior and remained on high alert for signs of trouble.
Joan felt overwhelmed and saddened that other well-intentioned parents judged her son’s erratic behaviors as intentional and her parenting skills as inept. Even her best friend, who had children of her own, rolled her eyes in disgust at Neil’s angry outburst when the touch of a shirt label terrorized his sensitive skin. A quick snip of the scissors rendered the shirt wearable, but Neil recovered slowly from the intensity of the incident. Still angry, he verbally lashed out at Joan. To Joan’s disappointment, her friend found Neil’s behavior “intolerable, bratty, controlling, and manipulative.”
While Joan tried to build a stable family life, Neil’s play dates and birthday parties were often disastrous. What might start out as a smooth, fun time easily turned into a rocky upset. At one birthday party, stressed by no nap and unfamiliar, sugary food, Neil anxiously wanted his present to be the first one opened. Encircled by a tightly packed group of excited 4-year-old boys, Neil was blasted by a barrage of sensations and expectations. Joan missed the cue that Neil’s stimulation limits had maxed out and before she knew it, he let loose howling and screeching that his present was not opened first. Unable to comfort or quiet Neil, Joan watched in horror as the howling turned into wild running, the birthday cake crashing to the floor, and kids hitting, sobbing, and hiding. She grabbed Neil, stuffed him into the car, and vowed to never take him to another birthday party in his entire life.
Every foray out of the house had the potential of turning into a disaster. Even Neil’s preschool teacher suggested that they find a different school because of their little boy’s “inability to conform.” Joan reacted by throwing herself into another desperate search for answers and medical guidance. She listened to countless professionals and tried new strategies to encourage compliant behavior. But medical and psychological evaluations led them to believe, as other people did, that Neil’s behavior was planned and intentional. In other words, he behaved this way on purpose to manipulate and control.
By the time Neil was in kindergarten, new books offered explanations of behaviors resulting from “brain-based failure.” The children described in these books were unable to develop normally, had a low tolerance for frustration, and were very inflexible, characteristics that all cause excessive family and social stress. This description seemed to fit Neil; even small transitions from play to the dinner table did not go smoothly. He did not like surprises or change.
Now, armed with a new understanding and a glimmer of hope, Joan and Eric found a medical professional who finally listened and took them seriously. This doctor hit the nail on the head—Neil had neurophysiologic damage caused by his traumatic birth; no wonder he held his stiff little neck upright for so many days after his delivery. Finally, something made sense.
Joan kept reading the latest research on brain chemistry and disabilities. She came across words like “spirited child,” “active alert,” “explosive child,” and “output failure.” These terms and conditions helped describe Neil’s erratic behaviors and his intense, emotional reactions. They helped explain his anger, rising like a volcano before Joan had a clue about what sparked it, and the negative moods he had trouble controlling. She and Eric began understanding and accepting Neil as he was and letting go of who he could not be.
Naturally, all this reading led to more questions. If Joan’s son was cognitively debilitated, how was he supposed to think rationally and make good choices when he felt really frustrated? What could help ease his tremendous difficulty letting go of any idea his brain locked onto? With such physical sensitivity, how was he supposed to cope when a tag on his shirt felt like a knife poking his neck? Or adapt when plans unexpectedly shifted from going to Grandma’s house after school to going to the barber for a haircut felt intolerable? Still, Joan felt encouraged. Neil’s newly identified neurophysiologic damage explained a lot. And this new brain-based, behavioral research included skill-building strategies for parents and teachers. She now believed Neil could learn to reduce his reactivity and she could learn to parent him more effectively. She felt comforted, energized, and able to project a positive future for her family.
But Joan still felt isolated. All her friends had “normal” children; it was hard for them to understand Neil’s problems. By chance, she saw Maria’s flyer on a bulletin board and envisioned a group of women who could help save her sanity.
When they held the first meeting at the local parent-child center three people came. Like Joan, these mothers questioned their parenting abilities and instincts and questioned a medical system that commonly dismissed them as “over-anxious mothers.” They were all enduring similar heart-breaking parenting experiences and had all lacked the support they needed for a long time.
Joan’s own words best describe the group’s experience: “When we found each other and began talking about our children’s similar characteristics, we felt profound relief from our isolation and uncertainty. We shared stories and tears, strategies, and hope and regained personal strength and direction. These exceptional mothers and I have been through enormous ups and downs with our bright, diverse, challenging children. Living in a society that values conformity and misunderstands and fears differences, has been painfully challenging. It has also provided incredible learning opportunities. I know now that these creative children require extra tolerance, patience, understanding, and compassion from all the adults in their lives in order to function well, succeed, and feel understood. When I think of the support that these women provided in my early parenting years, and continue to provide me today, I am grateful beyond measure. These women saved my life. I would not be the same parent today without them.”
