Home And Family

Recently, a reader wrote to ask me whether we as parents in our society might be doing too much for our children with special needs, particularly in the area of schools and education. Her thought was that “if we do too much for kids, all we do is teach them they can’t do for themselves.”

This raises the important issue of self-advocacy. It’s the absolute most important thing we can teach our children with special needs. The weeks before school starts can be an especially good time for teaching some of these skills. This is also a time of year when many parents find that there are varying types and amounts of school-related “to-do’s” that come with the job of parenting a child with special needs.

Many parents of children with special needs, in addition to teaching their children to advocate for themselves, have additional roles and responsibilities that are either expected of them by the school system or necessary in order to ensure teachers and staff are properly prepared. Even though the child may already be advocating for him or herself quite well, these are often things that would best be handled before school starts. And the child can still be involved as much as possible in these preparations, even though school hasn’t officially started yet.

For example, my son uses an FM system to help him hear in classes, and every summer about this time I call the school to be sure the equipment is back from “summer service.” Then, we go in and briefly visit the teachers to make sure they are all aware of how to use the FM. My son has always come along with me on these visits. When he was in kindergarten, it was me who did most of the explaining. Now, he’s a few years older and it’s he who does most of the explaining! So by starting back-to-school preparations early, there’s plenty of time to involve children and teach them how to advocate for their own needs.

Another example is a mom whose child uses a wheelchair. Before school starts, she goes into the school with her child, and they traverse the hallways and classrooms making sure everything’s truly accessible (even though school buildings are built to be accessible, you’d be amazed what gets “rearranged” — art supply closet built into a hallway … ramps used as storage space … !!). They make a list of needed changes, and it’s the child who goes into the main office and talks to the staff about what needs to be fixed before the first day of school.

One other important example is a school system that is resisting implementing the child’s stated IEP services, or worse, denying services altogether. These would be services such as OT, PT, counseling, speech and language, and more. These are discussions that take place between parents and school officials, and sometimes mediators and lawyers are also included. Children generally are not a part of those discussions.

And just one more example – a growing number of children have severe or life-threatening allergies. Especially when these children are young, their parents meet with teachers and staff before the school year to make absolutely certain that everyone is completely informed about what the child can and can’t eat, what to do when a classmate brings in food to share, and emergency procedures.

The ultimate goal is absolutely for children to be able to advocate for themselves. Along the way, parents do get involved depending on a number of factors, including the child’s age, their ability to communicate, the degree of complexity of their child’s disabilities, and the cooperation level of the school.

As parents, we need to continually re-examine what our children can do for themselves, what they may need assistance with, and what may need to be handled for them. And we can be proud knowing that all our hard work now, teaching our children to be independent and self-reliant, will help them lead the full life that is our greatest hope for them in the future.