A Wild Ride: Our Blog

Part 1 -- Building friendships through support groups.
Part 2 -- Building friendships through support groups.
Part 3 -- My child is aggressive, defiant, and frequently out-of-control.
Part 4 -- My child exhibits persistent, impulsive, and unpredictable behaviors.
Part 5 -- My child is easily over stimulated and overwhelmed.
Part 6 -- My child complains of physical ailments that have no obvious cause.
Part 7 -- My child is inflexible, unable to handle change and has little emotional resilience.
Part 8 -- My child is so often inconsolable.
Part 9 -- My child is emotionally detached from our family.
Part 10 -- My child struggles with personal boundaries.
Part 11 -- My child is highly sensitive.
Part 12 -- My child is socially inept.
Summary

Posted by Elizabeth at 12:41 PM in Friendship | Permalink | Comments (0) | TrackBacks (0)

To create a support group of your own, visit Support. In the meantime, here's the latest installement from Sarah and Joan's group. To read the entire series, go to Friendship.

The end of the evening

As the meeting winds down, Joan brings us full circle to her initial question, how do you define a challenging child? “I think it’s clear from our discussion tonight that there isn’t one profile that fits all challenging children. Every one of our kids is different from the others, but some share similar problems. I think we each feel that our child overwhelms and even scares us sometimes. Our kids’ intensity and out-of-control emotions and behaviors cause us a lot of worry and frustration. The public humiliation and guilt we all talk about leaves us feeling inadequate as mothers.”

Maria is smiling in agreement. “I think all our kids have the potential to make life extraordinarily difficult or unbelievably delightful. We love our kids. We love their sweet faces. We appreciate their place in our families. But because life with them is so hard, I find it comforting that we support each other while we take the wild and unnerving ride of raising these kids. I’m really glad you joined us tonight, Sarah.”

As we say, “Goodnight” and the others say, “See you next month,” I know I’ll come back too. I already feel a warm connection with these women who seem to understand what’s hard for me about raising Nicholas. Thanks to this group I feel a sense of relief. I actually look forward to another day with Nicholas. He’s not the only kid on the block who is so hard to parent. And I’m not the only Mom who needs a group like this to help her hang on.

“So did you learn anything new?” my husband asks as I come through the door. “Yes.” I reply. “I learned that I’m not alone.”

Posted by Elizabeth at 6:02 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

To create a support group of your own, visit Support. In the meantime, here's the latest installement from Sarah and Joan's group. To read the series, go to Friendship.

My child is socially inept.

“Have you noticed how that type of obnoxious noise makes it difficult to find and keep friends? Valeries continues the conversation. “Most kids run the other way. Caroline will also burst into anyone’s conversation and then wonder why the other girls are miffed at her. I know she cares about her friends but she acts so insensitively when she’s around them. I guess it’s because she’s afraid of getting her feelings hurt if the girls reject her, so she kind of makes it happen, keeping a little control. Or maybe she doesn’t know a polite way to be included, but when she barges in like that, the girls think she’s rude.”

“I understand how difficult social interaction is for challenging kids,” says Jackie. “When Jared was little he never made the first move. He always waited for someone to invite him to play. Because his level of intelligence was beyond his peer group, it was hard for him to relate to them.”

“Mark thinks everything must be fair,” adds Mia. “Not just fair but equal and resolved to his liking. The only way he can deal with conflict is through physical force or name-calling. He needs to win at all costs. How many friends can you keep if you always have to win and are unwilling to compromise?”

Posted by Elizabeth at 9:18 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

To create a support group of your own, visit Support. In the meantime, here's the latest installement from Sarah and Joan's group. To read the series, go to Friendship.

My child is highly sensitive.

Clearly exasperated, Mia chimes in. “And when we confront these children with their behavior, they are hurt beyond belief. I’m talking about a little slight on the school playground, or a negative comment from the teacher, those everyday assaults that life throws their way. My son seems so fragile and easily bruised. He reacts way out of proportion to any adversity. Of course his sensitivity isn’t only over hurt feelings. Mark can’t bear to have anything rub against him. The tag on the back of his shirt feels like a knife scraping his neck. He is troubled by the seams on his socks and any new clothes. He flat out refuses to wear anything but previously worn clothes, broken in and soft on his skin.

“Nicholas hates smells,” I add. “Fragrance of any kind drives him crazy, and if it’s a cream or ointment, we are talking major upset. I don’t know how he does it but he can tell, all the way from the kitchen, when I put lotion on my legs in our second story bathroom.”

“Graham detests noise unless he’s making it,” Maria adds. “He sticks his fingers in his ears in class. He cries when we turn on the stereo unless we keep the volume way down. He barricades himself in his room when his brother watches TV. But look out when Graham’s in the mood to make his own noise. His screeches are deafening.”

Posted by Elizabeth at 1:33 PM in Friendship | Permalink | Comments (0) | TrackBacks (0)

To create a support group of your own, visit Support. In the meantime, here's the latest installement from Sarah and Joan's group. To read the series, go to Friendship.

My child struggles with personal boundaries.

“There’s another problem that Neil and other kids like him have,” says Joan. “They don’t recognize other people’s physical boundaries because they lack a sense of their own. They need to touch and feel things – to push up against something solid – in order to find boundaries in their physical world.

“In his pre-school and early elementary years, Neil was oblivious of the disgust and negative remarks from other kids when he talked to them incessantly … nose to nose! You know, like the people who stand so close to you when they talk that you can see their nostril hairs. Neil was like that, and he had a terrible time standing in line. His hands were always touching the child in front of him, or running into other people with some part of his body in order to establish the boundary that his brain could not.”

“There is another type of boundary issue with difficult kids, or at least there is with mine,” Valerie reminds us. “It’s the attitude that ‘what’s yours is mine.’” Valerie describes how her daughter has no qualms about making other people’s property her own. “Caroline has a poor sense of boundaries; she has little sense of self or others. She borrows, steals, lies, interrupts, and refuses to deal with anything that isn’t about her. I wonder if that is typical for her age. Her friends act this way to some extent, but Caroline’s behavior seems extreme.”

Read Part 1.

Read Part 2.

Read Part 3.

Read Part 4.

Read Part 5.

Read Part 6.

Read Part 7.

Read Part 8.

Read Part 9.

Posted by Elizabeth at 2:43 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

My child is emotionally detached from our family.

Tess spoke up for the first time that evening. I barely noticed her sitting quietly in the corner. With tears in her eyes she talked about her child. “I don’t know if Alex – that’s my 8-year-old son – had difficulties as an infant. If he did, they were never dealt with in the orphanage where he lived for the first four years of his life. At times, Alex clearly needs physical comfort but rejects being touched. It’s as though he fears a hug will ignite him. Our entire family can tell that he is not attached to us – he is so emotionally disconnected. We see this in his ruthless behavior and absolute lack of empathy for other people.

“We believed that with love and a good diet he would soon become a normal child, leaving behind those unfortunate early years. But four years after his adoption, Alex is still willful and detached. This was obvious the day he set our house on fire. He endangered and terrified us – the people who love him most. This wasn’t simply a childish prank or a fascination with matches. It was devious and intentional. He frequently does other violent things. I’m sorry, but this is not boys-will-be-boys behavior.” The women in the group appear truly pained for Tess. Her life sounds so hard and unpredictable in a dangerous way.

“We live in fear,” she continues, “because we just can’t seem to get through to him. I’ve tried to create a loving home environment and provide both my kids with a childhood of love and understanding. It hasn’t taken with Alex. Even bringing him to a playground is an odd experience. He shows no interest in any of the other children. He sees them as competition for adult attention. He greedily eats the snacks and charms the adults, one-by-one. My son never makes a friend because his anger inevitably gets the best of him and any potential friends quickly withdraw. Yesterday at home he peed on his rug, destroyed his closet door, tore off his sailboat wallpaper, and ripped up all the art projects he’s made – all this before breakfast!” I’ve just met this woman, but I can feel her despair from across the room.

Read Part 1.

Read Part 2.

Read Part 3.

Read Part 4.

Read Part 5.

Read Part 6.

Read Part 7.

Read Part 8.

Photo © fred goldstein - Fotolia.com

Posted by Elizabeth at 6:57 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

I just had a chat with the mom of one of my son's classmates. We touch base from time to time, and we learn things. I learned that there might be one more kid in their class than my son had mentioned, and that my son has a new friend named Michael. She learned that there was a little bit of homework last night that her daughter didn't mention.

When your kid doesn't always give you the full story, comparing notes on the story fragments other parents get from their kids can help both of you put together the puzzle.

This may be true for non-special-needs parents, too; for all I know, that's what those moms are chatting about in their cliquey little knots on the lawn waiting for kids to come out of school. But parents of children in special education have a particular lot to offer each other, and a particularly hard time doing it. When your child takes the bus to a school outside your neighborhood, you miss that lawn-gathering time, and that knowing-who-the-other-parents-even-are experience, too.

So how do you find a parent buddy in your child's class? The mom I talked to today is somebody I met when we were both class parents back in elementary school. Volunteer for that duty if at all possible -- those phone lists you get, and the responsibility to contact parents regularly, can help you make contacts.

Read more of this essay on Terri's About.com Web site.

Check out her Web site for adoptive and special-needs parents.

Posted by Elizabeth at 9:33 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

My child is so often inconsolable.

This conversation is really touching on one of Nicholas’s core problems, so I jump right in. “Did these behaviors begin when your children were babies? I’ll tell you why I ask. Nicholas was difficult beginning the day he was born. My baby never slept and he always cried. I am not exaggerating. He ALWAYS cried. He seemed joyless, despite our attempts to entertain or comfort him. True, he would easily fall asleep, but he never stayed asleep long. He’s five now and anxieties and night terrors still plague him. On most days he awakens before dawn, looking to me for comfort. Years of sleep deprivation and exhaustion have made me less resilient and have taken their toll both physically and mentally. They no doubt have also taken a toll on Nicholas.”

“Not all our children were difficult from birth,” says Joan, “but I believe that most of them showed some problems early on. On the very day we brought Neil home, I had the uneasy feeling that something was not right. Those blissful first days in the hospital turned into a hellish nightmare of exhaustion and panic at our inability to soothe and quite our fragile baby. For months we would awaken to Neil’s gut wrenching cries that persisted for hours without any logical explanation. His piercing screams sounded like he was in excruciating pain but no doctor was able to identify why. My God, how we paced the floor for hours, nerves frazzled, emotions spent. We were in a perpetual state of crisis.”

Read Part 1.

Read Part 2.

Read Part 3.

Read Part 4.

Read Part 5.

Read Part 6.

Read Part 7.

Photo © Joyce Wilkes - Fotolia.com

Posted by Elizabeth at 9:43 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

My child is inflexible, unable to handle change and has little emotional resilience.

“I guess I’m lucky in that Jared doesn’t have physical ailments, but parenting him is just too damn difficult,” says Jackie, introducing herself as she offers me a cup of tea. “I find it hard to accomplish anything in the course of the day. It’s hard to endure his moods, crying spells, tantrums. Hard to comprehend why he thinks in his negative, oppositional way. Hard to persuade or convince him differently if his mind is set. His physical energy simply outdistances mine. When he gets upset he bounces back very slowly. He needs hours, sometime days, to recover.”

Every mother in the room understood this lack of resiliency. Disappointment over a lost baseball game, a difficult piano lesson, or a simple math assignment can drive these kids into an inconsolable depression or rage that goes on and on. I could relate 100 percent.

“The other day I realized that through his inflexibility, Jared could manage and manipulate the adults in his life,” Jackie continued. “I could tell that he found this both exhilarating and scary. I’ve been told that difficult children often need to feel a sense of control, in part to quiet the intense anxiety they feel so much of the time. The slightest problem at school and Jared buries himself in his room for hours. You know, I think I’m the one with the physical problems. His lack of emotional resiliency gives me a wicked headache!”

“Neil is a mirror image of Jared,” Joan exclaims. “Change just knocks Neil off his axis. For example, he becomes enraged and uncontrollable if we go visit Grandma after school instead of to the library as planned. His unreasonable explosions are so outlandish that they throw me off guard!”

Read Part 1.

Read Part 2.

Read Part 3.

Read Part 4.

Read Part 5.

Read Part 6.

Posted by Elizabeth at 8:08 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

My child complains of physical ailments that have no obvious cause.

Many of the moms nodded in agreement because their children also complain of physical ailments when there is no identifiable cause, not even after repeated trips to the doctor. “For months Neil would double over with intense stomach pain every morning before school,” Joan told us. She and her husband had consulted numerous doctors and also tried alternative dietary approaches – more acidophilus, less junk food. More fruits and vegetables, no dairy. Vitamin supplements. “I’m willing to try anything,” says Joan. “Anything that would help Neil get through the day without any physical discomfort.

“The problem is – he’s not faking it. Neil really does feel awful. His head is pounding. His stomach is hard and hollow. Sometimes I am certain that other parents, and even Neil’s teacher, think I am heartless when I don’t respond with sympathy to his latest physical complaints. Their attitudes usually annoy me, but then that little guilt devil creeps in and I think, what will happen if Neil actually is sick with a life-threatening disease? How would I feel if I ignored it only to find out later that it was too late to save him? When the guilt overcomes me, off we go to the doctor who by now thinks that Neil and his mother both need their heads examined.” Joan chuckles. “Well, it wouldn’t be the first time.”
Read Part 1.

Read Part 2.

Read Part 3.

Read Part 4.

Read Part 5.

Posted by Elizabeth at 6:46 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

If anyone wants to find, or join with others to start, their own support group for parents of challenging children in New Jersey, just call Ed. He's glad to help with contacts, ideas, and support:

N.J. Self-Help Group Clearinghouse
Phone 1-800-367-6274
More easily remembered as 1-800-FOR-M.A.S.H. (Mutual Aid Self-Help).

Building friendships through support groups - Part 5

My child is easily over stimulated and overwhelmed.

Maria describes her son, Graham, as intense to the extreme. “It doesn’t take much to over stimulate and overwhelm him. If Graham’s withdrawn, then he’s barely reachable. If he’s energetic, he becomes out-of-control. I can’t tell you how many times I’ve wanted to dive under the shopping cart at the grocery store. And if I lose it at the end of a tough day, and yell at him, other shoppers glare at us with imperious, unfounded contempt. That feels real good.

“Graham is never just a little tired – he’s exhausted and unable to function. Last Friday night he didn’t get much sleep. The next day while the other children sang “Happy Birthday” at a friend’s party, Graham put his hands over his ears and withdrew into the corner, never coming back to join the fun. All the noise and sensory overload were like a projectile, sending him over the top. On the way home he cried over the party he felt he missed. Graham is simply MORE of everything and I am constantly second guessing myself. Should we have skipped the birthday party since Graham was so tired? Would we have avoided the tears and the drama? My husband thinks I coddle him but when he tries a different tactic, Graham still has a miserable time.”

This sounds familiar to me. I’m still not sure how this group of obviously loving moms can help me, but I feel drawn to share some of my life as a parent with them. “I remember when Nicholas was only a few months old. He would fall asleep when we were in a store or at an event where there were lots of people. I felt as if he was shutting out the world. But when Nicholas woke up, he would scream in agony as if all the noise and stimulation was somehow attacking his nervous system. We could never have people over to our house because Nicholas would cry and cry, and I would miss their visit, spending my time instead in the dark of my baby’s room rocking and consoling him.

“And forget about going to playgroups. Within ten minutes Nicholas would start whimpering, building to a wail that was impossible to ignore. We’d end up leaving after the first 15 minutes. Nowadays he avoids social situations of any kind, which is how he copes with what he calls ‘too much day.’ The problem is that there are situations he can’t altogether avoid, like going to school, so he comes up with reasons not to go. I can’t tell you how many stomachaches and headaches this kid has during the school year.”

Read Part 1.

Read Part 2.

Read Part 3.

Read Part 4.

Posted by Elizabeth at 7:03 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

My child exhibits persistent, impulsive, and unpredictable behaviors.

I was next introduced to Valerie:

“I agree with what both of you are saying,” adds Valerie, another mom. She is the sole support of her family and is raising Caroline, her 12-year-old daughter, alone. “I think that sometimes people just don’t see kids for who they really are. Caroline has a classmate who has purple hair, a tattoo on her neck, and a pierced eyebrow. People think she’s a pot-smoking, disenfranchised rebel. Well, that girl is on the honor roll and she’s the favorite babysitter in the neighborhood!” I notice Valerie let out a big sigh.

“Now my daughter,” she continues, “dresses in the latest teen fashion, has plenty of friends, and never gives her teachers or softball coach a hard time. People think she is an ordinary, sweet teenager. But at home she is a Jekyll and Hyde nightmare. Her constant oppositional behavior and ugly, hurtful accusations drain and demoralize me. One day last week, after Caroline left for school, I found a little gift she had left me – feces in the clean laundry basket. I can’t sleep. I can’t eat. I am both afraid and sad so much of the time.” The bags under Valerie’s eyes confirm her difficult life.

“Caroline has a lot of trouble dealing with disappointment. Last week she expressed her frustration over a canceled night with friends by being self-destructive; she banged her head really hard on the wall over and over. When I tried to reason with her she just screamed at me. She was possessed! And the worst part? This is an everyday occurrence. When even small things go awry, it’s the end of the world. Yesterday, the store was out of her favorite cereal. Later I found her in her room, cutting on herself. She never speaks to me unless you count the times she screams at me. And consequences are a joke. She acts out regardless of whatever consequence I impose.”

Read Part 1.

Read Part 2.

Read Part 3.

Photo © Jason Stitt - Fotolia.com

Posted by Elizabeth at 6:29 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

Joan suggested, “Maybe to help Sarah know she is on common ground here, we could introduce ourselves and each answer the question – based on our own child and our parenting experiences – how do you define a challenging child?”

My child is aggressive, defiant, and frequently out-of-control.

“Hi, Sarah. I’m Mia. Welcome to our group. I think that some of the emotional and behavior problems our kids have are similar to those of other kids but more intense. Like the difference between a night-light and a bare bulb. My daughter Katy struggles with ADHD and as a single parent, this is really hard on both of us. Dealing with my daughter’s father is also problematic because he and I have very different parenting styles. Consistency in Katy’s life would certainly help her ADHD, but the shift from my house to her Dad’s and back again is disruptive.

“I feel as if I am on a perpetual roller coaster ride when it comes to dealing with Katy. She swears at me, not just once in awhile, but all the time. She lies. She hits. She is always mad at me.

When I reach for her because I just want to hug and hold her close, she pushes me away. That hurts.

The school counselor tells me that Katy's behavior is a reaction to our divorce. Give me a break! Her doctor said that ADHD is at the root of his problems, but that doesn’t make our lives any easier. In fact, the easy answers are often not the correct ones and they are definitely not the complete ones. From my perspective, a challenging child is one whose difficult behavior is the norm rather than an occasional occurrence.”

“It’s good that you have a diagnosis, Mia, but clearly that isn’t the end-all in helping Mark,” interjects Joan. “I think the word diagnosis is kind of loaded. We spent years trying to get Neil accurately diagnosed. We thought it would at least give us some guidelines – some ways to help him thrive. And it has helped. His behaviors are less mysterious now. They have an identified basis. I also realize that a diagnosis is not just a mirror reflecting who he is as a person. Neil is a unique person with his own character, strengths, and personal quick sand that repeatedly drags him down."

Read Part 1.

Read Part 2.

Posted by Elizabeth at 6:04 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

During the next year, I would see Joan around town, and each time, she asked about Nicholas with sincere concern and interest. I would roll my eyes and give her a brief update of our constant day-to-day struggles. “Come meet the other moms, Sarah,” Joan would say. “You don’t have to go through this alone.”

Finally, the years of dreadful isolation and loneliness drove me to attend my first group session. Joan introduced me to the other moms – Mia, Valerie, Jackie, Janet, and Tess. I sat comfortably on the sofa while the others sat in the surrounding overstuffed chairs, all eyes looking at me, welcoming and curious. I introduced myself and mentioned that I was having difficulty with my son. “I’m not sure how you can help me.”

Joan suggested, “Maybe to help Sarah know she is on common ground here, we could introduce ourselves and each answer the question – based on our own child and our parenting experiences – how do you define a challenging child?”

Read Part 1.

Posted by Elizabeth at 6:04 AM in Friendship | Permalink | Comments (0) | TrackBacks (0)

When I first met Joan five years ago, she and a few other women had already formed a support group for moms of challenging kids. She explained to me that they met monthly to offer each other encouragement during these frustrating and often painful times. In the few short years since Nicholas’s birth, I could not recall a day that was not difficult. At that time, his baby book had a few snapshots of him as a smiling child, but most photos were images of a worried child, a painfully shy child, one who was clearly troubled by everything around him.

Joan shared with me that she too had a son, Neil, who tested her every waking moment. But he sounded like the exact opposite of Nicholas. Neil was aggressive toward other people; Nicholas withdrew into himself. Neil needed many friends; Nicholas wanted limited social interaction – the fewer people the better. Neil had been labeled socially deviant and expelled from pre-school; Nicholas didn’t even want to start pre-school.

As we talked, I realized that although our boys were dissimilar in many ways, they both fit somewhere between normal and institutional. I also realized that Joan and I shared common feelings of worry, embarrassment, shame, and guilt.

Joan told me that each mother in her group was parenting an extremely challenging child. Several of the children shared some similar emotional difficulties or problem behaviors. Some even had a professional diagnosis. The glue that held the group together was the moms’ need for support and resources for dealing with their children.

At first I resisted attending. My son’s issues and how our family dealt with them were our business – no one else’s. I didn’t want to talk about these troubles with strangers. Exposing Nicholas’s personal problems felt like gossiping and violating his privacy. If these women knew the truth about my son, how would they judge him or me? We already had a good support system and a few professionals who were helping us understand Nicholas. Our search for solutions had taken us from our family doctor to a pediatric neurologist and finally to a psychiatrist. Together they determined that Nicholas suffers from Generalized Anxiety Disorder and obsessive-compulsive traits. They also suspect that he suffers from depression, but at his young age it remains hard to diagnosis.

During the next year, I would see Joan around town, and each time, she asked about Nicholas with sincere concern and interest. I would roll my eyes and give her a brief update of our constant day-to-day struggles. “Come meet the other moms, Sarah,” Joan would say. “You don’t have to go through this alone.”

Posted by Elizabeth at 6:05 AM in Friendship | Permalink | Comments (1) | TrackBacks (0)