A friend of mine is in the midst of checking out special education preschools for her little boy. She went to visit one the other day and described to me how kind of taken aback she was when first stepping in the building. She was overwhelmed with what she saw and had a hard time processing all of it.

I remember that feeling well.

For the first year of Amichai’s life, I juggled my own work schedule around Amichai’s therapy (PT and OT) schedule. When Amichai was about eight or nine months old, his PT suggested that we place him in a special education preschool for the upcoming year. Huh? My limited perception and understanding of special education was reserved for children with learning disabilities.  As far as we knew, those were not Amichai’s challenges so what exactly was she talking about?

She explained that special education includes physical disabilities as well. (As I read over this line, I am shocked at my obliviousness and downright ignorance.) Amichai’s PT worked at a preschool that provided various therapy sessions throughout the day – whether that was one on one or group work. Plus, the teachers and staff were trained by the PTs and OTs on how to engage the kids so that even within the context of play, the children were getting in extra work. She felt that placing Amichai in this type of environment would really give him a push forward. Every day he would be getting consistent and intense therapy.  This all sounded good to me, but it was still hard to get past the title of Special Education. What did that really mean? What did that look like? She encouraged me to visit the school.

Like my friend, the first time I took a tour of the school I too was taken aback. I too was overwhelmed when I saw a row of little wheelchairs and walkers lined up outside a classroom. And I was overwhelmed again when I walked into that classroom and saw kids fitted in leg braces and sitting in chairs with safety belts. There was one little girl wearing a helmet. I felt my eyes widen a bit, and I started to look away. Wait a minute. Wait a minute. Am I in the right place?

For close to a year, I had gained a deeper understanding of what CP is and how it specifically affected Amichai. I accepted what happened and I tried with everything that I could to embrace the challenges that it presented – to teach Amichai that nothing can stop him. I believed in what I preached to him, but this – wheelchairs and walkers? safety belts on chairs? – Amichai didn’t need these things. This was not our world. This world was scary.

When Amichai is scared, I tell him that its ok to be afraid. There are things out there that can make us jump I tell him. But once we understand that it’s only a loud noise, or its just dark – well than maybe we can see it’s not so bad after all. And maybe next time it won’t be so scary. Also, it helps that he holds my hand…

If I was going to teach Amichai how to get over his fears, I had to do the same. Why were the wheelchairs and the walkers and the helmets scaring me? Why did I look away? Because at that time, to me – they just represented disability. It wasn’t that I was in denial about Amichai’s diagnosis. I knew what the challenges were, but because I wittnessed his accomplishments every day and the determination he displayed – I never thought (and will never think) of him as disabled. And I certainly did not want Amichai to live in a world where he is defined by disability. This was not our world.

What I learned though was that the school didn’t place itself in the world of disability either. The entire staff – from teachers, to therapists, to the guy who builds those seat belt chairs – they all live in a world of potential and promise. They see these little kids with their whole lives before them and are deeply committed to building a strong foundation for them. They believe in their talents. They believe in their abilities, and that is incredibly empowering. When I realized this – and it certainly did not happen overnight – I was able to look fearlessly at the wheelchairs and the walkers and the braces and say – you do not scare me anymore. Today, when I walk into the school, I don’t even notice the wheelchairs. I see them, but I don’t. What I do notice, what has become for me the defining feature of the school, is how happy these kids are. They smile and laugh all the time.

It can be liberating to let go of your fears. We have these notions and perceptions as to what perfect is. Perfect body. Perfect job. Perfect house. Amichai helped me see that really, perfect is as perfect comes. Everyone is granted gifts. Sometimes those gifts don’t always come in what we perceive to be normal packaging. But you have them, they are yours – so own them. When challenges come – and they most certainly will -rely on your own perfect to see your way out…I can also say that through my own experiences, someone will always be there to hold your hand too – even when you stubbornly insist on doing it yourself.

I think, more than anything – this is exactly what Amichai’s school is trying to impart to its young students. Embrace your perfect, reach high with everything you got, and know there are always people who are cheering you on.

And I think that’s a pretty special education.

Amichai has high muscle tone that runs down his right side – but most of it is concentrated in his hand. His thumb tends to close inward into his palm and his hand is sometimes fisted even in a resting state. What makes this even more challenging is that the muscle tone increases as Amichai attempts any activity with his right hand. So, when Amichai wants to open his hand to hold an object, he must overcome the tone firing back at him from all fronts. This makes it difficult to get a grip.

But Amichai has a trick.

Make a fist. Hold it as tightly as you can. Then take your other hand and press down with your index finger and other thumb on the bottom joint of your fisted thumb. What happened? Your fisted thumb came loose. Magic. Not really, it’s physiology – that’s just how the muscles work. Pretty cool. Early on – when Amichai was still a baby, his PT and OT gave me exercises to help open up his hand. Always start with the thumb they told me. Once you can get the thumb free, its easier to get the rest of the hand open.

But the thing is, I never taught Amichai this trick. He figured it out on his own. It was sometime last year, I was watching him try to collect some items and he needed two hands. Instinctively he took his left hand and pressed down on his right thumb – his hand opened, he placed the object in his right palm and carried on without missing a beat. I stood there a bit surprised, a bit dumbfounded, but thoroughly impressed. I would never have figured that one out on my own. I remember asking him what he did. He gave me a look that I fear I will see again in later years – a look I give still give my own parents when it seems like they have just asked me the most ridiculous question imaginable. The only thing missing was the eye roll. He stared me down and simply said – I was helping my right hand Mommy.

Right. Duh.

For over a year now, Amichai has used this trick to get his hand open. At first, his OT wasn’t bothered by it, but after giving it more thought – she decided she wasn’t so thrilled. She feels he has the capacity to open his hand without the help – he doesn’t need the trick. And truth be told, Amichai has become quite proficient at opening his right hand independently to grasp smaller or thinner objects. The fact that he can do this almost effortlessly today is directly attributed to the countless hours Amichai’s OT has spent working with him and even more importantly – her belief in him that he CAN do it. It is a gift to work with professionals who believe as deeply as I do in Amichai’s capabilities.

Amichai’s OT is top rate. I trust and follow her advice. I encourage Amichai to open his right hand without the help of his left hand as she has instructed, but honestly – and at the risk of getting lectured by her – I don’t necessarily discourage the trick. The irony is not lost on me. I’m the person who will never choose the short cut. I put my head down and just go to work. I preach that hard work will pay off. And when it comes to Amichai’s therapies, I have always made sure that the people working with him know its ok to push him. Bring it.

So why am I letting him off the hook? Because its not that he’s getting away with something – its that he’s figured a way out of the box. When our kids our stuck, we tell them to think and be inventive. We want them to be resourceful. More so, repeatedly I have heard from numerous physical and occupational therapists, that hemis (kids who are hemiplegic) are the hardest to work with – the reason being: they manage just fine. These kids have a functioning body and don’t want to be told how to hold something the right way or walk a certain way – they can figure it out with instincts and creativity…so move out their way.

What I’ve learned as a parent to one of these stubborn hemi kids, is that the real key is finding a balance between providing them with the necessary framework of therapies and then letting them adapt that framework to the real world. Understanding how to modify, revise and then modify again is an imperative lesson of life. Amichai is learning that now and it will serve him well… because in the real world, sometimes you need to be quick on your feet. Sometimes you just need to get the job done in whatever way you can. Sometimes you need a trick or two up your sleeve.