Advocacy, Parenting

Advocating for Your Child with Special Needs in a Way That Promotes Self-Advocacy

As the mom of a now-adult special-needs kid, I’ve been thinking a lot about what we did that helped, what I wish we hadn’t wasted time and money on (there will always be a lot in that category, so don’t beat yourself up!), and what I think was most important. That last category, in particular, has changed since I was actually “in the trenches.” From this vantage point, I now realize that one of the most important things, a quality without which nothing moves forward, is emotional resilience. By that, I mean the ability to take in struggles and failures, wrestle with them, get back up, and move on. I mean the incredible strength of spirit it takes to be acutely, constantly aware your own inadequacies, or what the world sees as such, and still believe that you are worthy and capable of reaching for your dreams. I recently asked my son CJ what he thought had helped the most with this, and his answers surprised me. In my last blog post, I discussed the importance of getting into your child’s world as much as possible. Today, I’d like to talk about advocacy.

Parents of kids with special needs know that advocating is forever part of the territory.

You’re the hub that holds your child’s world together—explaining his needs to teachers, family members, other caregivers. It’s ongoing, it’s exhausting, and it sometimes makes you want to scream, “Can’t you people deal with a little variation?!” And eventually, you probably need to step back and let your child fight his own battles. When and how to do that varies, but I believe that is one of the most important steps toward empowering your child to navigate the world.

We never actually sat down with our son and said, “This is how you talk to people about your issues; this is how you handle these kinds of situations.”

But we did discuss his issues with him in a very matter-of-fact, “this is just how your brain works” kind of way. He surprised us more than once by distilling those conversations beautifully. I once spent an hour overexplaining my son’s issues to a homeschool group facilitator, only to have CJ later explain himself more effectively and in a fraction of the time. I would get caught up in the neurological details, which—according to my son—made people want to run screaming from the room. (Note to other brain research geeks: Almost no one is as interested in that as you are.) Despite my tendency to overdo things, however, he did learn something from my approach.

I didn’t realize how much he had overheard me advocating for him, and the tone I set (if not the content) seemed to help him find his voice.

“You were always just clear and firm—not apologetic, not hostile, not defensive. And when you explained why I needed this or that, you made it sound like ‘Look, it’s not a big deal, but this just is how he works and this is just what he needs.’ You showed me the right note to hit when I talked to teachers myself.” Whew! I now believe that advocating for a child is more important, on more levels, than I realized at the time. It isn’t just a matter of telling a teacher what techniques will or won’t work. It’s a message about who your child is, how he needs to be treated, and what’s going on for him as a human being, not just a little learning machine. How you see your child and his challenges translates powerfully to others.

Ultimately, you are trying to create this message in his world: You are seen, you are understood, you are accepted. Therefore: You are safe.

All children (indeed, all humans) need this, but I would argue that children with special needs require it more because they experience it so rarely. How we present them, and how we teach them to present themselves, is crucial to their self-identity.   For more from Marijke Jones, read Child Decoded: Unlocking Complex Issues in Your Child's Learning, Behavior or Attention, co-authored with Kim Gangwish and Robin E. McEvoy, PhD.