We don’t always talk about it but the truth is that parenting a child with a disability challenges who we are. It challenges us as the parents that we would like to be, the parents that we planned to be. In so many ways, parenting a child with a disability challenges our very nature, whoever we have come to be.
Raising my voice – interrupting, arguing, dissenting, disagreeing, confronting – speaking up and speaking out does not come easily for all of us, all of the time. I would rather take the quiet seat at the back of the room but my child’s disability forces me to sit right up front, up tall, and be heard, no matter how small I may be feeling. Growing up, I was not the class clown or a cheerleader, on the debate team, nor class president. I kept my head down, did my work, studied, got good grades. I knew the answers and secretly hoped not to be called on. Back then it was about blending in, not standing out.
The progress we make – speaking up, being heard, getting your child the supports he needs and has a right to – is worthwhile and gratifying and nonstop and hard won and often comes at the expense of some of our own well being. Some people might call it personal growth. Most of us don’t need this much personal growth.
Personally, I cannot order a coffee at Starbucks without the barista asking, “What? What did you say?? What is your name? Linda? Glenda?? Debra??” Because most of the time my natural voice is not even loud enough to accurately order a caffe latte. This happens on a regular basis and each time I stop to ponder it. Didn’t she hear me?? How could she not hear me? I’m talking in my regular voice. Is my voice too quiet, am I quiet?? After performing this internal reflection ritual, I grab Debra’s coffee and walk back out into my regular life.
But drop me into a pack of IEP team members and you may hear me roar. At least that is how educational teams tend to see the parent. Often we feel backed into a corner, with no choice but to defend and protect our offspring.
Confrontation is the hardest of all and some days are relentless. Like when it is again time to meet with the school team. I thought the team had decided to do X, what is the status of that? Whatever happened to that assessment I requested…? Are his visual breaks happening? Or when school services that are written into the IEP simply do not happen at all.
Or when you realize it is time to break up with a likable therapist. Sorry, it’s not working out like I thought…we want different things. It’s not you, it’s us. Ok – it’s you.
Or meeting a new medical provider. Has he been diagnosed with autism? the doctor asks. Uh – NO – he hasn’t, you say, Do you know much about cortical visual impairment? She replies, We don’t see that very much, we see autism. Autism. Got it.
Or getting bumped from an appointment you made six months ago with a new provider who you spent hours and hours researching to even find in the first place. Hear me roar.
Then there are the little things, like playground intervention. Attempting to facilitate a “natural” social interaction, when nothing about it is natural. Intervening when another kid tries to push your kid off his beloved spinner, after he’s been waiting and waiting – “When he’s all done, it’ll be your turn” you tell the other kid. No guilt. Don’t let people push you around. You’ve been waiting, don’t let other kids cut in front of you... Little lessons in self advocacy that he is going to need down the road.
All in a day’s work.
Some days are harder to summon that voice. Some days the voice is tired. Many days are relentless. But I was having such a good day… until, until, until. Most of the time it’s exhausting, on top of the rest of your life, whatever that looks like. I’m not only gonna need my own coffee – I’m gonna need Linda’s and Debra’s, too.