And therein lies the catch 22 of having a child with special needs.  In the best possible way – our children are always under a microscope. Every movement, every look, every act of behavior is dissected and examined in order to ensure that the most effective options for treatment are employed…but the flip side – our children are always under a microscope. There must be a discussion and interpretation of everything. We are always zooming in to get a closer look. You know in middle school science class, when you turn the dials of the microscope to adjust the onion cell slide – there is a point just after you reach the clearest image that if you turn the dial the tiniest bit more – it becomes blurry again.With all the good intentions of staff members and therapists – their poking,prodding, and willingness to look at every angle – they sometimes turn the dial waaay past the point of clarity, so as parents, we are left in a slightly blurred and confused state.

I get confused when they tell me Amichai occasionally cries after drop-off in the morning. He’s five, he’s allowed. I get confused when they tell me each day as Amichai enters the classroom, he first looks around –surveying the scene, making note of which friends have already arrived. He then carefully chooses a game or toy he wishes to play with. This seems like something I would do – getting a lay of the land and then making a well-thought-out decision. I get confused when they tell me that Amichai has a strong preference to the color red. Fire trucks are red. Apples are red.Superman’s cape is red. All things that Amichai loves. I wonder what I’m supposed to do with this information. And then I wonder, even in these days of hyper/helicopter parenting – are these the issues that are brought up with other parents whose children are in a mainstream educational framework?

When I was in second grade, there was a rumor going around one morning. Nostradamus had predicted the world was going to end that very day. I got myself so worked up that the teacher sent me to the school nurse/lunch lady. She called my Mom at home – she wasn’t there. Seeing that I was in a bit of a state, they called my Dad at work…a big declaration of urgency in those days. He was on his way. It is one of my father’s greatest joys in life to remind me of this moment. He imitates me with precision. He describes walking into the school office and seeing a blonde pig tailed kid on the edge. I look at him with a bit of crazy in my eyes and just begin to hysterically blurt out in a high-pitched squeak – the world is going to end, the world is going to end! My father was half amused, and half flabbergasted that his child would believe such illogical nonsense. He calmed me down, took me back to his office and periodically would reassure me – you see, the world is still here. The thing is, I had a major meltdown and the school seemed to be ok with it. I don’t even think my teacher called to make sure I was alright.  Everyone recognized I was a little kid, I got scared – end of story. The only reason we still talk about is because my father likes to laugh at my expense.

But a child with special needs isn’t always given the benefit of the doubt as I was of just being a little kid. And I get it –overlooking or ignoring can be gravely irresponsible. The thing is though, Amichai has so much on his plate – can we leave off anything? I always think that he is the hardest working five-year-old on the planet. Physically there are challenges he tackles every day with grace and resilience. But there are emotional challenges which I am just starting to appreciate. Amichai started meeting with a child psychologist who is helping us work through these challenges. The psychologist explained to me that children like Amichai – hemis – are very aware of the differences between the two sides of their body. One side is completely functional, the other is not. Emotionally, this can put a child at odds with himself – leaving him feeling completely capable at times and then confused and frustrated at others. I’ve never seen this outright frustration with Amichai, but it doesn’t mean it’s not there. It’s a legitimate experience and one that I want Amichai to feel free to express as well as develop a narrative that gives him confidence in his abilities. It is an essential piece in his overall emotional well being and development.

As if learning to cope with CP isn’t enough, another goal of the therapy is to give Amichai the necessary tools to deal with the unfortunate tensions a child of divorce experiences. Amichai needs his own set of skills and system of managing the stresses. To be clear, I have no regrets. I feel secure in the choices I have made. I feel secure in knowing that our lives are better because of those choices. And while there are moments when I wish I could take all these challenges and put them on my shoulders, I also know that Amichai is not a child to pity. While the matters can be complex and intricate, addressing the issues head on is the only way to go. Amichai is getting what he needs in order to gain a healthy perspective. This too is an essential piece in his overall emotional well being and development.

Still, it’s a lot on his plate. Like I said – the hardest working kid I know. And maybe it’s a lot on my plate too. Raising a child is hard – hands down the hardest work I have ever done. And perhaps raising a child with special needs is a tad harder. The needs are real and intense. They keep you up at night sometimes, worries and concerns that never shut off. When the smallest of issues are raised, issues that would normally be waived off as kid stuff, that parent is left wondering in her mind what more can I do? Maybe for our own sanity as parents, there are things that can and should be overlooked.A child with special needs is first a child. So, when I see that Amichai has an obsession for all things red or my friend complains that her two-year-old son isn’t sleeping – can you just give us this one? Don’t waste your time trying to bring these issues into focus too. For one moment let the parents be (regular?) parents, and let the kids be kids.

I loved everything about this interaction. I loved that she was staring at his brace for a while. Staring isn’t always bad – kids should take notice of something out of the ordinary. I’m assuming she had never seen a brace or maybe not close-up like that, and she was just glancing with curiosity. I am not saying to gawk or point, but it is ok to be aware of the people surrounding you…and if something looks different – ask. And she did just that. A genuine inquiry, a request for information. We can sometimes fear what we don’t know, but if we don’t ask, that fear can just fester and grow irrationally. She just wanted to know and understand. I also loved that her Mom gave her the freedom to ask. Parents are often on edge that their children will somehow offend with inappropriate questions or comments.  She was not shushed, quieted, or told its none of her business. And lastly, I loved her reaction – cool. She didn’t see disability or difficulty. She just saw the brace for what it is, thought it was pretty rockin and then said goodbye to her new friend Amichai.

It was a scene straight out of a Mr. Rogers episode. Real warm and fuzzy. But is this reality? Can I expect that all interactions will be pleasant teaching moments? And what happens if they’re not – how do I prepare Amichai?

My belief that Amichai is child with immense capabilities is not just hyperbole. I know – I know, he can do anything. He has shown time and time again that a physical limitation will not stop him. I know this, I feel it, I live it with everything I am. But as much as I can instill this belief in Amichai, to continue developing and cultivating it within him – I also know that I cannot control how other people react, what other people will say. I remember sitting in the lounge area outside the NICU after Amichai was diagnosed. It was all very tranquil – the sunlight poured in through the rounded glass windows overlooking the Jerusalem forest. I wanted to scream into the forest. My parents – ever the cheerleaders, were pumping me up. You can do this – you were trained for this moment. He can do this. He will do this. Nothing will stop him – you know this. I did. I didn’t even know Amichai yet, but I knew this. Still, I found myself suddenly blurting out – yes but kids are cruel! I was expressing a dark fear I hadn’t even wanted to say out loud because I didn’t want to give it credence: What if kids make fun of him because he’s different? My parents looked at me with shock. It’s a look I recognized from my teenage years when my sisters and I would purposely say something which would gravely disappoint and set them off…my younger sister seemed to have real knack for this, still does. Oh Gd. I’m in trouble. Where is this coming from?! Who told you that?! Why would you even say something like that? Who taught you to think like that? We didn’t teach you to think like that.

I think my parents’ reaction was based on a few different factors. First, my parents taught us to be understanding and accepting people. Cruel behavior toward others and making disparaging remarks about anyone is simply wrong. Any upstanding parent teaches his child the same. Second, they taught us to know who you are and stand tall. If someone would ever make disparaging remarks toward us – well, that’s their problem. Don’t let the words or behavior of others bring you down. Third, I think my parents were trying to slow me down. Amichai was just a few days old. Let’s not jump to any crazy conclusions or imagine unwritten scenarios. And lastly, I think they were probably activating their own parental instincts to protect their child and tell me bad things won’t happen. If I wanted to protect Amichai from all the evils in the world, they were doing the same.

But they know the reality. My parents raised four children and while they wouldn’t categorically define kids as cruel (I wouldn’t either!), they know sometimes there is at least one kid who says one stupid and thoughtless thing. Even if you have raised the most confidant of children, that can still be scary for a parent because you know it will hurt. Your child will hurt.  I’ve been there as a kid. I’ve even been there as an adult, and I don’t think it was easier for my parents to watch regardless of my age. But there can be something elevating in that moment. It’s not that I would ever want Amichai to be in a situation where he is Gd forbid bullied or made to feel less than what he is. That is categorically wrong and intolerable. But an inevitable encounter with some jerk at some point in time? It will happen. Instead of fearing these moments, what if we embraced them? What if we used them to learn about who we really are? Do I really believe in me? Everything that I was taught, everything that my parents tried to instill in me about who I am, my infinite strength, my infinite worth – do I believe it? Am I going to truly stand tall or am I going to let this jerk get to me? You must make a conscious choice to rely on your own truths and filter out the noise. These might be unpleasant situations, and I hope that one does not need to face them again and again, but they are breeding ground for character building.

Protecting your child comes in so many different forms. I will never put Amichai in a situation that is harmful or dangerous – be that physically or emotionally. But protection also comes in the form of giving your children the right tools to face the world. So, in the same way my parents taught me, I will continue to cultivate his confidence and belief in himself. I will continue to instill him with the knowledge that his strength comes from within and that is priceless. I won’t pray for the day Amichai encounters a jerk, but if he ever does – I’ll pray he has the proper perspective and uses it as stepping stool for greatness…and equally important, I’ll also pray that society continues to evolve – that differences are seen, understood, and appreciated. I will pray that more little kids stop, stare, ask, and then see Amichai for what he is – another friend.