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.

In the past month, two parents have approached me for advice. They are in the process of applying for state aid and recognition of disability for their young children. Once approved, they will eligible be for services like admission into special needs schools, provision of therapies, and financial stipends to help curb costs. While gearing up for their meetings with social services and the National Insurance Institution, they called me to ask about my experiences. What should I expect? How should I present my child’s case – Should I exaggerate the issues? Should I emphasize delay? Are there topics to avoid? Is it true that I should make sure my child is exhausted, so she won’t participate during the evaluation?

The sad part is – their questions were all valid. When I was going through the process, I was indeed told to schedule the meetings specifically at Amichai’s nap time. Make sure he’s cranky – really cranky. Don’t feed him. I was repeatedly told not to talk about Amichai’s progress. In fact, Amichai’s therapists told me to say as little as possible because I was too positive. They were fearful that my optimism would influence the government clerk assigned to the case and that Amichai would be deemed ineligible. Amichai’s OT and PT had to provide letters describing his condition. Experts in understanding the system, they told me the letters would be grossly exaggerated. They handed me their reports in a sealed envelope. I never read them – I simply handed them over with the rest of the paperwork.

I was so perplexed and deeply troubled by the instructions we were given. I know all the advice we received came from the purest of places – they wanted to ensure that Amichai would indeed get what he needed. Yet for me – to be told to exaggerate and emphasize what he can’t do goes well against everything I believe in. Every day – every, single, day – I tell Amichai that he can do anything he wants to do. I can and I will. Now I should say he won’t be able to reach his goals? That he is below an arbitrary line of potential? It’s a game they told – just play the game. I guess people assume that once they mention the word game to me, I’m all in – that somehow, I’ll suit up and jump in. But not this time. How is this a game? Its his life. I can accept that I will need to jump through hoops to get an appointment, but shouldn’t we take a hard look at the system if parents again must jump through more hoops so that their child will be awarded the services she is duly entitled too?

Ya, I know – bureaucracies are bureaucracies. The people working in these institutions are professionally trained to remain stone-faced and exert minimal effort. I think the idea behind exaggerating the facts is to just make sure you do the work for them. Make it obvious so they don’t have to strain themselves. Get in, get approved, and keep the line moving. But here’s the deal: Any parent of a child with special needs will tell you – If I didn’t have to be here, I wouldn’t.  I would urge every employee to think about this before calling the next parent in the assembly line. I’ll go out on a limb and assume that you briefly reviewed the medical records and files, that you glanced at the letters and at the very least you have seen the diagnosis repeated over and again in big bold letters. Instead of forcing parents to mire in negativity, let this be a positive experience. Let them speak freely about their child. Let them brag. Let them be proud. I promise it won’t take up that much time.

Rachel Callander, a rockstar in the world of parent advocacy – speaks about shifting the ways health care professionals communicate with parents and patients. After her daughter was diagnosed with a rare chromosome condition, she took notice of the language used:

“…the language I was using about her and the language that the doctors were using was very different. And I liked my language better. Because it highlighted ability and it highlighted humanity – whereas theirs was very negative, deficit language. And it took all of her ability and potential away. The healthcare professionals would use these cold, horrible phrases – like she was ‘incompatible with life’” (Dumbofeather, March 15 2018)

Healthcare professionals aren’t evil, and these bureaucratic workers aren’t heartless. Its just that it can become routine for them. Case after case, file after to file. Rachel points out that in her experience most doctors and other professionals are receptive to hearing her thoughts about the manner in which they speak, and are serious about making a change. The way a diagnosis is presented sets a tone for the patient and family. Positivity breeds positivity. We can be empowered and encouraged by the words that surround us. And, especially in a situation where the parent must now present that diagnosis – they should have the freedom to be as positive and optimistic as they want. There are irrefutable facts on the ground, but that doesn’t mean we shut the door on optimism. Quite the opposite – there is a little life in front of you fighting and working and breaking expectations every day. Celebrate that.

Amichai was eventually recognized and awarded the services he needs. On the day of the meeting, I took the advice of the people who seemed to know better and I simply remained as quiet as I could to hide my enthusiasm for my child. (Reading that back now sounds utterly ridiculous.) I don’t know if it actually made a difference, and I kinda hope it didn’t. I am grateful for the services Amichai receives, but in retrospect – I should have just been honest. I know that breaking down a bureaucrat is hard, but I should have told them that I am certain Amichai is stronger than I will ever be. I should have told them that the child sitting in front of you is nothing short of inspiring. I should have told them that the services you have the power to provide will only continue to enhance and develop an already expanding potential. I should have told them they can be a partner to extraordinary, and it doesn’t even require that much effort on their part…I bet they would have cracked a smile.