There are days where I stand in the middle of the commotion that is being a special needs parent and everything tunes out to a fine humming noise. Or one of those piercing, high-pitched ringing noises. I like to call it “the brink.” The brink of madness. The brink of absolute frustration. The brink of “Woe is me!” When this happens, I count down from ten. Or I try to make eye contact with Scar, as if I am the one with autism struggling to do just that, trying to put it into perspective and see my child and not a disabled human being. Or I walk into another room and take deep breaths, a feat that isn’t easy in a tiny apartment but works from time to time. The amount of patience it takes to keep moving forward is astounding and sometimes seems impossible. Which is why, when I see that patience in action, I am usually shocked but happy that it is working.
There is nothing more frustrating than having a special needs child with a terrible sinus infection trapped in the house, unable to expend energy or go anywhere to change her surroundings. The past two days have been just that. If she wasn’t melting down and biting her own hands, she was pulling everything out of the fridge just to keep busy. It is enough to make you cry. I did a few times, I won’t lie. I have been teaching myself ways to curb this behavior the best I can. Granted, I am doing it on the fly and I am unsure if there is any specific way that one does these things. But it helps enough that we can make it through the afternoon.
I built a ton of things with Lego’s. I turned off all the lights and gave her access to my computer to watch Netflix (it has a touch screen and she likes feeling like she is in control of what she is watching). I baked cookies. I sprinkled her pizza with nacho cheese Doritos to coax her into eating it (which actually worked). Anything to get food in her belly and keep that humming noise to a minimum. Anything just to get through the day and keep us both happy in each other’s company.
As I have said previously, we make progress but the smarter she gets the crazier the meltdowns get. She knows more now and she can’t get her feelings about things across the way neurotypical children do. And as I stood there, giving into the hum and ready to cry as she chewed on her fingers, her psychological exam results showed up with the recommendations for behavioral therapy and all the other services I still need and the number to call to make appointments. I wanted to fall to my knees and cry out in sheer joy. This is what I have been waiting for, after all the work I have put into contacting everyone and their mother about how to proceed as a special needs parent and how to improve my child’s quality of life. I felt like there was another battle won. But the war rages on. Time to plot the next strategy, take over the next territory, and take no prisoners.
There is one thing I know, however, as I settle into this new life with my very special child: the war is never really won. You fight each battle to strengthen yourself for the next one. And sometimes you come out of some battles stronger than you do with others. And eventually the goal is teaching the child how to fight for themselves because, sadly, as much as I wish I could live forever to make sure that she gets everything she needs, I will not always be here. So I am piecing together her armor as I galvanize mine.
I am going to call now and make appointments. I am going to keep moving because that is all you can do. When the enemy advances you keep pushing against them. In this case, the enemy is the system. A flawed system with very few people and very little time to allot to each child that needs these services. Persistence is key. I have canonized myself the patron saint of persistence at this point. No, I won’t be here forever. But Scar will wear my medal on her shield for the rest of her life and know that I did everything I could. I will never give in to the hum and neither will she.