Having a child with special needs is a great equalizer.
It’s amazing how many times your mindset changes in one day as the parent of a special needs child. Truthfully, that’s a gross understatement. One moment, there is harmony in your little world. Everyone is happy and calm. You feel capable and strong. You are a rock! But that moment is fleeting. Before you can even think about patting yourself on the back, the switch flips, leaving you feeling utterly inadequate.
Though I wouldn’t wish this chaos on any parent, it’s a feeling I wish that more could understand. It’s isolating to feel like no one understands, sometimes. Don’t feel bad about that though. Rarely do I even have time for this feeling to register. I’m too preoccupied with this whirlwind that is my reality.
This morning, my oldest two children woke up prepared for the snowfall that was promised to them like a gift on the night before Christmas. The sleep was not even out of their eyes before they were in my bedroom ripping open the blinds. It was akin to how you’d expect them to rip wrapping paper off of their presents. Excitement was in the air. In the back of my mind, I knew that kind of excitement would spell trouble for my youngest who lives her life on the Autism spectrum.
Fast forward 30 minutes. Mom and dad have made a reasonable attempt to make sure that everyone has had breakfast of some kind. The snow clothes are on the older two in record time, and chaos sets in. It is when we set out to bundle up the little one that panic sets in over something so benign- we put socks on her feet before letting her put on her boots. Our child is now horrified and in full meltdown mode. Her body is stiff and she is screaming. Together, her daddy and I finish the arduous task of dressing her, layer by layer. Why didn’t we stop, you ask? We didn’t stop because our older two are now crying, as well. Their excitement has reached a critical level, and now they are hot and sweaty in all of their layers. They just want to get outside, but once again, their sister is struggling and so are Mommy and Daddy. We didn’t stop, because it was an effort to reach “normalcy”… an effort to make some family memories. If we could only get past this meltdown and get everyone outside, she would work through it and be happy and excited like she was when she was playing outside yesterday.
Only, yesterday, we didn’t plan anything. Yesterday, there was no process; there was no struggle. She threw her boots on under her nightgown, without socks, and ran out the door happy and free. Today, we were the mean parents who wanted her feet to be warm, and in asking her to do so, we caused her walls to go up and her to temporarily shut down.
Day by day, nothing seems to change, but everything is different. Day by day, the parents of special needs children are required to think of every minute detail when planning anything. Failure to do so is failure to understand what it is that makes their child special in the first place.
And trust me, for moms and dads who are as new to this new way of living as we are, it feels like their is an awful lot of failure.
In the end, we all made it outside and the end result was that the laughter far outweighed the tears. It’s just that fine line, that grey area that will drive you crazy if you let it.
Should we have abandoned the plan to take her outside? Did forcing her to get ready (literally holding her down to get her dressed) cause her more agony than it was worth? Or should we be proud that we powered through it to give her the experience of playing in the snow with her family? (Ok-ice, not snow, but don’t tell our kids because they didn’t seem to notice!)
The daily struggle includes rehashing it all at the end of the day. It includes wondering if you did more harm than good.
She had a rough day today, beyond just this morning. It is heart wrenching to see her struggle on these days.
But she is so beautiful, inside and out, even as she struggles. And she is so worth it.
All parents are scared that they’re not good enough, at times. Parents of special needs children, perpetually so. But we are also champions, regularly, because each day brings so many little battles.
It truly is a great equalizer.