My son’s story is not unique. He was a sensitive and focused baby, that developed into a challenging toddler, and finally an absolutely dysfunctional young child on the Autistic spectrum. Dysfunctional that is, without medication and therapeutic intervention. Many parents have a child like this. For those of you reading this who do, you know that you are a warrior. I don’t say this with any hint of sarcasm. I am a warrior. It started when he was very little. I braved the park, day after day, so that my son could interact with other kids and enjoy the playground. While it was a relaxing time to socialize and get a little leg tan for the other moms, it was a mission for me. But I did it – and you did it – because we didn’t choose to have atypical children, and we love them anyways. And we do what we need to do in order for them to thrive.
I have only done this “special needs” parenting thing here in Israel, so I can’t compare it with what the experience would be like elsewhere. But it is an arduous and often painful journey here. Luckily, the Anglo network is very helpful. Once you get pointed to “Hitpatchut Hayeled” for an evaluation, you can tap into a supportive and active community of English-speaking parents who have done it. You will need to make many appointments, get many referrals, make many calls, and drag your child to many hours of testing and questioning. You will also need to choose if you can afford to spend thousands of shekels and get things done much faster, or if you must wait, often for a long time, on the public health care and education system. Waiting wouldn’t be so bad, except that for most ASD kids (like my son), if they aren’t in the right environment, every day in a normative setting is a nightmare. And so waiting “just a few months” for an evaluation, of which you will need seven, can destroy the year of the child, his siblings, the teacher, the classmates, and everyone else who is stuck with you while you wait.
For us, we saw both ends of what this country has to offer. I witnessed horrific neglect before my son was diagnosed – his struggle shoved under the rug and trampled on until it could no longer be ignored. Like most in this country, no one will fight it for you, and the government offices will not help you. But if you push, and if you call, and if you nag, you can get your child excellent services. Once we did finally get the ASD diagnosis, we were embraced by the benefits – including a monthly stipend from the government, hugely subsidized therapies, and most of all – the Kitah Tikshoret – his very own class. After having spent a year and a half in a normative classroom, with teachers that were pulling their hair out, and classmates that couldn’t tolerate him, we were beyond relieved that he would be in his own ASD class. These classes are an ASD child’s right, granted by the Israeli government. And the government sends transportation to and from your home to allow your child to attend one. They are small (less than ten students), staffed by special education teachers, and specialized in the many quirks of kids on the spectrum. Finally, I don’t have to experience dread and a knot in my stomach when my son’s teacher’s name comes up on my phone. He is appreciated, he is nurtured, he is respected, and understood.
While I was in America visiting family, I learned that Israel and the US seem to be taking different approaches towards “what to do” with ASD kids. Integration, or keeping ASD kids in the normative classroom, is the goal in the US. Only if the child is still not able to function, even with tons of special education integration and assistance, are they offered a separate environment. In Israel, it seems to me that once a child gets the diagnosis, the system leans towards putting him or her into a Tikshoret class, without first trying an integration plan. My sister-in-law explained that in the US the average class size is much smaller than here. Teachers are trained in special education policies and it’s the school’s responsibility to make sure that each child is succeeding and thriving. I’m sure, just like Israel, the system isn’t perfect, and kids slip through the cracks. But I do wonder why we seem to be moving in different directions in this area.
This whole field and orientation towards special education is new, and we’re all figuring this out, one generation at a time. When I think about my own son, I shudder at the memory of him being in a normative classroom. Then again, he was never in a normative classroom with any special-ed plan. He went from being the Class Terror to being in an eight-person class of all kids on the spectrum. I am so happy for him to be a big fish in a small pond. He has friends. He has confidence. But being surrounded by only ASD peers isn’t real life. He will eventually need to integrate and live in the big, scary world, with people who are not on the spectrum. And I wonder, if the skills and tools they are gaining in Tikshoret will translate effectively into an integrated social life.
For now, I count my blessings. After having lived in the hell of pre-diagnosis, I am grateful for every day that ends with a normal pickup from school. When I ask “how was your day?” I never take “good” for granted.