Recently there have been a couple of posts by parents trying to help the general public understand a little what it is like to raise a child with special needs. I saw this one written by a mom, and she referenced her inspiration written by a dad. It was interesting for me to read these pieces. We’ve reached a point where the child’s needs are pretty easily met. She gets speech and social skills support at school. We do gymnastics instead of OT. There’s some other learning issue going on, but it’s not affecting her enough to get the school off the dime. Aside from the occasional outburst or some resistance going to school, I’ve been focusing more on regular everyday kid issues like orthodontia and Girl Scout cookie sales. Compared to the severe medical issues that both of these families have experienced I feel like we’ve had smooth sailing. Still there was a lot they said that I could totally relate to. So this is my three cents:
Sometimes there is more than meets the eye. To the untrained eye, and even to some trained ones, the child looks pretty good these days. Especially in a nicely structured setting with well defined rules she can do quite well. When I find myself explaining her differences to people I am often met by a wall of doubt. Trust me – I did not make this stuff up. There is a lot of history that most people don’t know, and we’ve come a long way. That she has made good progress doesn’t negate the fact that she still has to work harder to get through her day than your neurotypical child. There are a lot of children with “invisible” disabilities so be careful about your assumptions.
I am my child’s best advocate. I wear the scars of all of that history that most people don’t know. Every doctor appointment, evaluation, test, tantrum, assessment, meeting, play date gone awry, each milestone and every regression are indelibly printed in my memory. I have stacks of paperwork and many more stacks to come. When everyone else thought “everything was fine” I was the one figuring out how to teach her to feed herself, and how to say flower. It was my hair getting pulled. At each stage there are new issues to work through, and I’m the one who helps her work through them – sometimes directly, and sometimes by attending more appointments, evaluations, and meetings. I have seen this child exceed my expectations again and again, and I will work (fiercely if necessary) to help her raise the bar yet again.
I’m not doing anything amazing. “I don’t know how you do it,” people say. I never know how to respond (especially given that I know many special needs moms do far more than I do.) The year that the twins were born and the child was diagnosed with autism was quite exhausting, but even then I didn’t feel like I was doing anything that extraordinary. I was doing what any good mom would do – trying my hardest to meet my children’s needs. There’s nothing here to pity or stand in awe of. It’s my child who is doing amazing things. She’s the one who has to work through sensory, language, and social challenges to navigate every moment of every day. If you want to applaud someone, applaud her.
If you feel like throwing in a few cents of your own, feel free to leave a comment below…