What It's Like to Suddenly Have a Special Needs Child – Kveller
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Special Needs

What It’s Like to Suddenly Have a Special Needs Child

I lost my son yesterday. It was only for 10 minutes, but still. We were at the apple orchard, and I had stopped to take a picture of my youngest daughter by the morning glories. When I looked up from my phone, my son had gone. There were hundreds of people around — kids and carriages and grandparents and stands with kettle corn, pre-picked fruit, and pumpkins. It was chaos, and I had no idea where he was.

Here’s the thing: My son isn’t a toddler. He’s 12 years old. But he is visually impaired, and the past few years have been a long journey of recovery after an accident that led to his vision loss. It was a biking accident, and it happened so fast. Yet, suddenly, his whole world — our whole world — was vastly different.

There’s a change that you undergo, as a parent, when your child is not OK. When you are suddenly thrust into the position of a special-needs parent, when your child is achingly vulnerable and seemingly normal things, like going to the apple orchard, can become tremendously scary.

When Sam was first hurt, he was terrified of being outside. He was in a lot of pain, and that certainly contributed to his fears, but the vision loss was devastating. When you can’t see what’s coming at you — and you’ve been so badly hurt with no warning — everything is suddenly dangerous. He was an anxious kid before the accident, but afterwards? He was terrified, all the time. He only felt safe at home.

Over the past three years, I’ve learned to anticipate his emotions and needs — to pick up on subtle cues that he’s overwhelmed or scared or needs help. When we’re in crowded places I stay within arm’s reach. I try to balance his need for independence with his need for assistance. I don’t always succeed, but I liked to think that I’m doing pretty well at this whole parenting-a-disabled-child thing.

Sam is recovering. His vision is slowly, slowly coming back. It may never fully come back — he may never be able to pick up a book and read again —  but he has regained functional vision. He’s finding ways to go out in the world again. He’s homeschooled now but he’s open to the idea of going back to public school, and he wants to try guitar lessons.

But the reality is that he’s going to live his life visually impaired. That doesn’t mean that he can’t do everything he wants, it just means that it’s going to be a little more challenging for him than it will be for most kids.

I’ve always loved the Jewish idea that parents are supposed to teach their child to swim, to survive in the world without us. And before the accident, I prided myself on being a “free-range parent.” I encouraged my kids to be brave, to be independent, to make their own choices and live with the consequences. And, really, that’s what Sam was doing yesterday at the apple orchard — he wasn’t scared, he was vaguely following his dad, catching up with him and going into the store to buy cider donuts.

But until yesterday, I didn’t realize how hard it was going to be for me to let go. It didn’t occur to me that in order to do teach your children to be independent — to swim on their own — you have to be able to risk them getting hurt. I didn’t realize just how unprepared I was to do that with him, after the accident.

I’m learning that Sam is more independent than I first realized. When I finally found him, standing at the register with his dad, neither of them were aware that I had spent the past 10 minutes frantically searching for him, terrified that he was stuck somewhere, surrounded by strangers, unable to find us. Terrified at the idea that he was terrified. In my head, he was much more vulnerable, much less capable of being on his own than he actually is.

There’s an old adage that my mother likes to repeat: What doesn’t kill you makes you stronger. But the reality is that what doesn’t kill you might just leave you weaker, less able to handle situations now that you know how bad it can be. When you haven’t sat in the pediatric ICU, hoping for answers and not finding them, it’s a lot easier to be cavalier about what might go wrong on an outing to pick apples.

Still, when you’ve endured what Sam has, you can handle a lot more than getting momentarily lost at the apple orchard. Which he knew, obviously. I’ve worked really hard at instilling the confidence and resilience he’ll need in his life, but I somehow had missed the memo that I need to work as hard on my confidence that he can handle whatever life throws at him. Teaching him to swim might have a lot more to do with teaching myself to step back, to let him venture into deeper waters, and have confidence that he can return, unscathed and stronger for it.

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