I’ll be honest, I have mixed feelings about the phenomena of awareness months. There is an absolute need for others to genuinely learn about something or someone that they would not necessarily encounter, confront, or even think about. Learning and talking about difference is invaluable. It fosters better understanding, compassion, sensitivity, and respect for those that are different from you. These months can serve as opportunities to bridge the gaps that divide. I imagine that these are the good intentions that lie behind the creation of such awareness months. On the other hand, there is a superficiality that comes with these initiatives. Its like checking a box – ok we acknowledged this group. It allows us to feel good about making some sort of effort. We develop special programming, invite speakers, write articles, and create the obligatory hashtag. Jewish Disability Awareness and Inclusion month is no different. Communities organize expert panels for discussion, websites create content for further learning, and at the risk of sounding less than PC – members of the community with disability are paraded around in a well-intentioned effort to help others learn and create face to face interaction. But more than likely it’s just a feel-good moment that fades without much impact. After that, the issue is just tucked away until next year. I think we can do better. I think we can scratch beyond the surface and start to create real change with a paradigm shift of perspective.

A foundational pillar of any Jewish community, if not the foundational pillar – is chesed – a display of love and kindness towards others, a giving of oneself to help another. Chesed is the fabric that creates a sense of shared responsibility in a community. That we are not mere individuals living in the same vicinity, but we are bound together through a commandment to simply care. There is an overwhelming source of chesed that springs forth in all Jewish communities when it comes to helping, supporting, providing, and ultimately showing kindness toward those with disability. There are organizations that do amazing and wonderful work, built by people who embody kindness and compassion. They give freely and willingly of their time to ensure that necessary services are provided. I know this personally and I am appreciative for every person who has invested in Amichai.

But there is a misconception that helping people with disability is a one-way street of service. That they need our help, our assistance, our care – but not the other way around. This is where we need to make the change, to shift our perspective. Disability does not define ability. All too often we narrow our focus on the limitation, and in doing so we are selling ourselves and our communities incredibly short. We need to zoom out and see the whole picture. There is a person in front of us who can give. This person has strengths and talents and capabilities, who not only benefits from the community but can provide benefit to the community. When we understand this, when we internalize it and believe it – than we can create a deeper sense of awareness. An awareness founded on the abilities of all individuals. An awareness that empowers all to extend a hand. An awareness that creates a place of true inclusion where everyone has a responsibility to use their gifts to improve. An awareness that runs deeper than a month…spilling over into the next month, and the month after that, and the month after until we weave together a more complete community.

A few months ago, I watched Amichai walk into first grade. I did not hesitate to place Amichai in a regular school. The school I choose specifically works to integrate special needs children and I felt this was a place he would have support – support to assist him but also support in him, appreciating who he is and what talents he brings to the table. I believe in those talents. And so, I did not hesitate. Still, I anticipated there would be a period of adjustment. Going to a new school, unfamiliar faces, bigger classes…he would adjust and ultimately succeed, but he would need time. And I anticipated that that first day of school might not go so smoothly. Amichai is velcro in new settings. That boy knows how to wrap himself around my leg and not let go. I was hoping for the best, but most definitely prepared for the worst. Soon enough, we found ourselves on the first day. He went for a red t-shirt instead of a sweater vest – already better choices. He held my hand – or maybe it was me holding his– as we walked up to the gate. There was music playing, balloons flying, kids shouting and jumping around – some crying. I took a deep breath in, I looked at Amichai and was waiting for the tears. That would have been ok – it was a tremendously overwhelming scene. I even wanted to hide for second. But the kid…ice. He glanced at me. I recognized that look – all business. He was ready. Backpack on, eyes straight ahead -Amichai confidently walked into school like a boss and didn’t look back. Game on.

That day and every day since – well at least every day that he has had school with the constant start and stop due to corona – Amichai walks, in fact runs, into school with that same confidence. Still doesn’t look back – I mean would it really put him out to just turn around and give a little wave? As I write this, I can hear my mother saying smugly – what goes around comes around.  Yeah, yeah. The thing is, I watch him happily run into school and then when I pick him up, I watch him happily run out of school. But what happens in between? From run to run, what’s he up to? How is he really adjusting? Is he engaging with other kids? Does he participate in class? On one hand, I assume he’s doing just fine because I haven’t received any phone calls…on the other hand, what’s he up to?

All my questions were answered last week when I had my first parent teacher meeting. By all accounts, it really was – thank Gd – a glowing report. The teacher described Amichai as attentive and diligent in class. He listens and shows understanding. He engages with his classmates, more and more of his personality comes out every day. He is quiet, but his voice is heard. He is confident. And then his teacher leaned in and said – I know there was some thought of having Amichai continue in special education, to have him placed in a resource room… but why? I don’t see it. I leaned back in my chair and smirked.

 A year ago, when I was meeting with the staff at Amichai’s kindergarten, they were hesitant to recommend sending him to a regular school. They were worried he would get swallowed in a bigger class. They were nervous that his pace was too slow – what if he could not keep up? They were fearful he would not find his voice. They were afraid his confidence would be shaken. I heard what they were saying, I even shared some of their anxieties, and I very much appreciated their deep concern. But there was also something unsettling about this concern – like an unwillingness to change, to progress, to take a calculated risk because they were too scared of what might happen. The professionals who work in special education – in my experience – are extraordinary individuals. They infuse care and love into everything they do. They are deeply dedicated to these children. I am forever indebted. But sometimes, I think they focus so much on disability that they miss seeing capability. That their belief in the child lies within the context of their diagnosis and does not extend beyond, so that when it comes time to make bigger decisions – they hesitate, paralyzed with fear – because what if they can’t?

But what if they can?

When Amichai’s teacher said – I don’t see it – its not because she isn’t looking. The detail in which she described him – she’s looking. She was also quick to ask me if there are other issues to be mindful of, things to pick up on so she can further foster Amichai’s progress. I think one of the advantages of having a child with special needs is that in ANY situation, people are always paying attention. And so far, this teacher has her eyes open. But her eyes are also opened to seeing his capabilities. She sees that he can. She sees that he will. Her question is not what if – she quickly saw that was not the concern. Instead, her question is simply how. How can I help him further succeed? How can I help nurture his talents? I don’t know if every report will be as flattering and positive as this one. Amichai is not perfect. I don’t know if every teacher will be as attentive or insightful. There are bound to be challenges ahead. Still, it’s a good start and I’ll take it. My greatest hope, my sincerest desire – is that his capabilities are seen. That they are valued, developed, and cultivated…and fine, maybe just once, he turns around to wave goodbye. I won’t hold my breath though…I once knew a kid like that.

There were two recommendations of framework made by his kindergarten staff. The first recommendation – Amichai can go into a mainstream classroom given the right parameters – a smaller class, an inclusive atmosphere, a shadow/wrap-around/assistant – whatever terminology you choose – to help when he needs. This made sense to me. The second recommendation – a resource room track. This would be a separate, smaller class with kids that have a variety of cognitive or behavioral challenges. While the class would physically be in a mainstream school, there is limited to no interaction with the rest of the kids. Within the class, each child receives their own individual educational program. Hmmm. I asked why they thought this was an option – Amichai is sometimes in his own world and works at his own pace. Hmmm…Is there any cognitive delay or issue? Not that we can see. (An official evaluation will be conducted but they don’t anticipate it revealing any diagnosis.)

I pondered this recommendation. I have zero issue with special education. See above paragraph and this article. I am grateful for it. Amichai needed to be in this framework to ensure proper development, but now…does he need it? To say that Amichai is in his own world sometimes and works at his own pace…well, I spoke to several educators and parents and their reaction was the same – show me a first grader who doesn’t fit this description. Even more so, this very issue is being addressed. The overwhelming feeling is that Amichai is not your average run of the mill six-year-old space cadet. He is kid with a lot on his mind. Can’t blame him. But this not being ignored. See this article. These emotional challenges are being attended to through his work with the psychologist, and certainly next year we will continue working with her to ensure a smooth(er) transition. While I respect the staff fully, I kind of wanted to say – ya, tell me something new. Seriously. Tell me something new that would help me understand why there is a need to keep him within the special education system. I’m open to it, I’m not scared of it, and if its what he needs – I’m all for it. But if there is no specific cognitive or behavioral issue – what really lies at the heart of this? Why are they hesitant?

I imagine their hesitancy lies in fear. What if it’s too much for Amichai to handle? Amichai is an introvert. There are times when he doesn’t always want to participate or share. New environments can overwhelm him. He doesn’t always like to be in a crowd. He takes him time, a lot of time – to warm up and feel comfortable. They are scared he might get swallowed up in a bigger classroom of kids. That he will retreat into his shell. That his self-confidence could break. These aren’t thoughts that have not crossed my mind, but two things give me assurance: 1. I am introvert too – we do just fine with the right support. 2. Amichai has that support and has made a tremendous amount of progress…keep reading; still – I have other fears. I am scared of how he will be accepted. How will the kids react to Amichai? How will he react to them? What efforts will the teacher make to create a positive environment of inclusivity?

But I also have fears – even greater fears – in the other direction. If Amichai is placed in a resource room – in a class with other children who have cognitive challenges or behavioral issues that Amichai does not have – won’t that hold him back? What if he isn’t challenged? What if his potential is not met, worse what if its not even seen? This is incredibly scary to me. I shared these thoughts with the staff. They didn’t disagree, they fully understood this side of it too. I know they care deeply for Amichai – but the fact is they happily sit on the sidelines. They kept repeating – at the end of the day its your decision. They aren’t passing the buck – its just not their responsibility. Its mine.

Determining what Amichai can handle, where he can be pushed and where he needs a little more support comes from knowing this child to his core. And I know him. Amichai has gone through many stages. He has grown, matured, and changed – sometimes with tiny little steps forward and at other times with giant leaps. At each stage, I listened carefully to what the professionals were saying – how he was progressing, what they were concerned about – both physically and more importantly emotionally. I addressed these concerns and we continue to put in the work. Yet all along, I just kept saying – be patient, give him chance, he will get there I know he will. And so, I was overjoyed but not surprised when his kindergarten teacher told me in the beginning of the year that Amichai is different. That all the sudden he’s participating, he’s sharing, he’s engaged, he’s answering and asking questions…he’s breaking out of his shell. She said it’s a giant leap forward. I told you so.

It’s not just with my gut, but it is with my full understanding and belief in him – that Amichai can go into first grade like any other child. I say this knowing it will be challenging. It will be a transition for him, there will be days that might be harder than what we bargained for. I have spoken to parents who have children with CP. Their children are much older than Amichai and have gone through the process. They relayed to me that there are trials and tribulations, that you must advocate for your child, that the school must know who you are. I get it, I’m preparing for it. They will know who I am. But the truth is there are some very good options out there for Amichai – schools with smaller classes, schools that have an eye toward inclusivity, schools that are progressive in their educational approach, schools that encourage different types and paces of learning. This path is not easy but its encouraging and I’ll take it – I’ll take all of it because I know he can do it. Just give him a chance. He will get there…he’s already on his way.

After being in the NICU for two weeks, the nurse called me early one morning and casually said, He can come home today. I needed her to repeat that. He can come home today. I felt a wave of relief, happiness, excitement… but it was short lived. Soon those feelings were replaced with another wave of emotion – panic. While Amichai was deemed strong enough to come home, how were they so sure I was up to task? If any mother ever tells you that she left the hospital with absolute confidence in her ability to care for another life…well, she’s lying. And yet, the hospital sends hundreds of mothers off each day believing they can handle it. This blind trust always amazed me even under the best circumstances. A life is entrusted to you without any practical knowledge or understanding of what that life needs. I can’t think of any other job in the world where in the prior experience section you check off none and yet for some crazy reason – you’re hired. I was so far out of my league.  Amichai was in the NICU. He had been hooked up to monitors and screens for two weeks straight. He was on two anti-seizure medications – one of which needed to be administered at 4 a.m. Suddenly, they were handing this little life off to me and saying, ok your turn – go handle it. Panic.

The learning curve is steep and quick. There is very little that will prepare you for being a mother. In those first days and weeks, I was swimming underwater – things were always just a little blurry and every time I surfaced, I was gasping for air. But soon, with the help of my own mom – I found my rhythm. I put Amichai on a schedule. I figured out the best way to burp him and bathe him, I learned that he did not care for the pacifier but liked my pinky finger instead, I discovered the best way to avoid getting peed on while changing his diaper, and I became an expert at administering his medication – even at 4 in the morning. Still wasn’t easy, but I was managing. Maybe the nurses knew what they were doing. Maybe I could care for this life.

Five years later, I am certainly convinced that I can care for my kid. I am confident that I know what is best for Amichai; yet, I still experience moments when I think to myself – am I qualified to make that call? Lately, that question has been swirling around in my head as we begin to research surgeries. There is no cure for CP, but there are surgical opportunities that work to reduce spasticity. Once spasticity is reduced, the hope is that function and movement will improve. Tendons and muscles can be lengthened or replaced, joints can be realigned, nerves can be cut…over the past week I have learned thousands of new acronyms and abbreviations for any and all surgical procedures – TIP, SPML, SDR, PERCS…goes on and on. Each surgery has its own set benefits and drawbacks, each surgery has its own set of expert surgeons associated with it, and each surgery has its own set of parents who laud it as life changing.

I want nothing more than to provide a positive life changing surgical experience for Amichai. He deserves it; yet, as I sifted through the material, I felt a familiar sense of panic. Intricate medical details, scientific studies – I understand the words I am reading, but how am I equipped to make this decision? Last time I checked, there is no MD, PT, or OT after my name. Obviously, I have consulted with Amichai’s therapists – they work with him every day and have a clear understanding of his needs. They have made efforts to be at each doctor appointment. They have assured me that they are there to assist and present their informed recommendations. Superstars. I also know that one appointment with one doctor does not seal the deal and there are other discussions to be had. Certainly, it is always worth getting second and third opinions which I have begun to gather. In the end though, its my decision. In the same way that I wanted to ask the nurses if they felt confident I can handle this, I feel a need to check in once again and ask – should this really be up to me?

The responsibilities of being a parent can be daunting, overwhelming and downright scary. I remember looking at Amichai as a baby – staring deep into his wide eyes – and feeling that full mantle of responsibility. He’s so little, so vulnerable – his well-being, his health, his development – it’s all on me. That sense of total dependence is there even today – he’s only five. He’s still growing, still unable to fully care for himself…reminding him to wash his hands after the bathroom is daily occurrence. Oops, I forgot. The day will come when he will take those steps on his own, but right now – his wide eyes stare back at me for guidance. Daunting, overwhelming, downright scary. But at the same time, the responsibility of being a parent is also an empowering privilege. I was taught not to squander privilege. You work to protect it, to cultivate it, to nurture it because you did not earn it, you were gifted it and you must care for your gifts. My parents always busted out the “respect your belongings” line. I find myself saying this to Amichai and see my own eye roll in him. But, I am convinced that if there is anything in this world worth putting my time and energies into protecting, cultivating and nurturing – often to the point of extreme exhaustion – it is him.

And I suppose, when I think about that idea, I recognize that the privilege of responsibility has brought out the best in me. My dad told me long ago that I couldn’t run from it, that the only choice I had was to parent up. Even on days when I can’t catch a break, and I feel I am failing at everything – I find comfort in knowing that there is at least something, someone – I have given my all. I can still feel the victory of accomplishment in the dark moments. So, to answer my own question and quiet the doubt in my mind – yes. Yes, it should be up to me. The professional assistance is there, and my decision will be based upon the information I have gleaned from them. In fact, any decision about Amichai’s well-being has always been made with professional guidance, but no one has put more into this child than me. I must rely on that sentiment to lead me. I would never and can never pass up the opportunity to step forward and say this is what needs to be done. He’s depending on me.

Bring on the abbreviations, the medical jargon and research papers…I’ll figure it out, I’ll find my rhythm.

I can care for this life.

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.

Playing through pain is a universal concept in sports. I am positive for every story I have where I sucked it up, put my nose back in place and just carried on – I have a male counter part who can recount his own wounded warrior saga. But the thing is, right or wrong – well most probably wrong, especially in this day in age – the female athlete always feels more pressure to prove herself. There is still a part of us still fighting to change stereotypes and perceptions that should have been put to rest a long time ago – that we are weaker, more sensitive to pain, or lacking the endurance which sports demands. So, we double down. I’ll play through it all. Broken bones, torn muscles, ruptured ligaments, jammed fingers, massive bruises with every shade of blue purple and red, cuts that never heal, extreme fatigue, endless training sessions…bring it all on. There is no quit – in fact, there is a burning desire to shove it in the face of perceived doubters. Let me show you just what I can do. Warrior girl.

There is something extremely empowering in knowing that you can take the pain – to plant your feet firmly on the ground as a massive athlete is barreling toward you, take the charge, absorb the pain as your body is thrown to the floor and then just get up. To know that the pain is fleeting, it will pass, and you will go on playing. Of all the skills and life lessons I have learned through sports – leadership, work ethic, teamwork – knowing that I can take it – that has served me well time and time again. When I have gone through particularly rough times, I would put my game face on. I would look into my own eyes through the mirror and frantically search for the voice that told me – I’m not hurting. And even if I am – I can take it, I can go on. Warrior girl.

But there is a danger in this too. Sokolove points out that ACL tears in young girls and women are “overexposure injuries” – the more often a girl plays, the greater her odds are of suffering a tear. You keep going and going and going. There is no stop because you aren’t supposed to, you aren’t allowed to – that doesn’t fit into the mentality we are expected to maintain.  But then something happens – you land the wrong way, you pivot too quickly – and it all comes crashing down. Game over, season finished sometimes before it even began…because we thought, because we were indoctrinated to believe – that our capacity to withstand discomfort and pain is limitless. And then we learn that’s not actually the way it’s meant to work. Something is going to snap sooner or later. We are actually weakened by the grind.

I’ve found myself struggling recently with the trials and tribulations I meet off the field. Not that I want it – but these days a smashed nose or sprained ankle or twisted knee – they don’t seem so difficult to manage when I think about the complexities of life. I’m a parent, I’m a single parent at that and a mother to a child with special needs – the obvious struggles are inherent within that statement itself. But there are also other constant and continuing stresses in my life which aren’t so obvious – which make me nauseas just thinking about – and these certainly take a toll. On one hand, the athlete in me pushes me to play on through life’s daily challenges – to absorb the hardships, the frustrations, at times ya – the pain, and keep going. On the other hand, I also find myself saying it doesn’t have to be like this, to admit the day-to-day grind can be punishing. Overexposure, again and again. Am I really meant to just fight through it? To live like that? I am told that the answer to this is unequivocally no. I don’t have to power through everything in life all the time. Logically I believe this – I even preach this same thought to friends when they are going through challenges. But I find it so hard to strike that balance between gutting it out and saying it’s just too much. Because if I said it’s too much – what would that make me? So much of my strength is self defined and wrapped up in my ability to keep going. How can I be a competitor in life if I give into the difficulty? Would I still be a Warrior Girl?

Maybe the answer lies in understanding the mechanics of prevention. Sokolove offers a comprehensive preventative program that can help our female athletes avoid an ACL tear and other devastating injuries. The ideas are based around the physiological differences between men and women and therefore developing more suitable training programs. Equally important he urges an elimination of constant overexposure and encourages coaches to teach their players to speak up about pain – even minor discomfort. Prevention. I know I can play through pain – but I don’t have to. There’s a better way. There are steps and methods I can implement in my life to avoid the emotional turmoil before it even begins. More than that, giving myself permission to say I’m even minorly hurting – eventually, I may even acknowledge this is the more responsible thing to do.  It might make my life easier. It might make me stronger.

Everyone loves the image of the wounded warrior. Its more exciting, more dramatic, more marketable. Kerri Strug lands on one leg to grab the gold. You can do it! Abby Wombach gets her head stapled after splitting it open in a nasty collision. #badass. You can’t help but respect their gritty performances.  But then what happens after the wounded warrior drags herself across the finish line? What’s left of her for the next fight? Maybe the real sense of empowerment comes from prevention and preparation because you are anticipating the challenges ahead. You are recognizing that you can get hurt, that you might even get hurt  – but you have mechanisms in place that will prevent you from completely crashing. Maybe you won’t make headlines. Blood and guts sells better than smart and sensible but that’s ok because you invested in the process, because you took control of your own fate, because you came to truly understand what you need… because you can actually go on the next day. You have redefined your strength by cultivating your weaknesses. Warrior Girl.

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.