A Wild Ride: Our Blog

Read Karen's January story about Missy and the birthday party invitation on the A Wild Ride Web site.

Changing Views

When you have a disabled child, outsiders often see you, as the parent, tied to your child. And that perception colors the way they see her. Your child is viewed as dependent and incapable of relationships outside of you. Other parents may even make the assumption that your child doesn’t need relationships beyond his/her family. You may have even, unknowingly fostered those beliefs. Your child has experienced difficulties in life that most children haven’t. You’ve been protective and perhaps afraid of what will happen if you’re not there. But if you want a healthy child, you have to let go and let her have new experiences. And you can start by making a simple list.

List all of the experiences that her peers have, and then cross off those which your child has experienced. Chances are-what you are left with are activities that require your child to be without you. These are experiences that take place with peers. And they may be activities that you have little control over- activities that perhaps your child isn’t invited to or included in.

Let Go and Ask for Help

• Start with yourself. With your list as a guide, now it’s time to do some soul searching. Does your child really need you to be present at each activity? If the answer is “yes”, then mark that event off the list. But think hard before you do so. Of those left, are there some situations that can be handled by someone else, such as a parent at a birthday party?
• Now focus on your child. If your child were invited to a birthday party today, what accommodations would he need? Does he need to be reminded to use the bathroom? Is there a way that you handle her anxiety or his hyperactivity? What are the things that you do for your child that could be passed on to another adult?
• The hard part. Probably the most difficult part of being the parent of a child with disabilities is to ask for help. Parents, and certainly children, don’t realize that your child is left out of birthday parties or other social events. Share your concerns with your close circle of friends- tell them that you’d like your child to have the experience of going to birthday parties or other extracurricular activities. Seize opportunities throughout the year; talk with other parents at social, sports, or other informal events. Talk to your child’s teacher, her coaches and her daycare provider. As word spreads, your child will begin receiving invitations. But in the meantime, choose a friend or two who have children and ask if your child could be invited to their child’s birthday party or another activity. It may seem staged to you and it may feel uncomfortable to ask, but if you don’t take a chance with the expectation that people really do want to help, your child will miss out on a wonderful opportunity that will foster independence.

Communicating with Other Parents

Think through all the things that happen at a birthday party or other kid-event. Consider the food, the activity level and the expectations that will be put on your child. What can you do now to ensure your child’s success?

Communicate with the adult who will be present either by phone or in person. Start by saying how excited your child is to be invited. Next, go over what they can expect from your child. If your child needs to arrive early to get acclimated to the area, simply ask. If your child has idiosyncrasies that you handle in a certain way, share those. For example, if your child is in the habit of asking “why” a million times, tell the parent how you get around it. And certainly if your child has any dietary restrictions, share those. Bring along your own food if absolutely necessary. But remember, the parent responsible for the event will have a flurry of activity and responsibilities to juggle, so don’t go over every single aspect of your child’s personality. Share only those things that will most likely come up during the party. You don’t want your child’s presence to be a burden. So stay positive and keep it brief.

Keep it Going

Once your child is invited to one party, it is likely that he’ll be invited to others. But if that doesn’t happen, be ready to advocate for your child once again. Relationships outside of the school house doors are an integral part of growing up; they’re a rite of passage that no child should have to miss out on.

Karen writes for A Wild Ride and her own site Write Now.

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