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I received this post yesterday from a friend of a friend. I immediately knew I wanted to share it with you, and the timing seems particularly appropriate. Today and tomorrow are powerful days to pray for things we need. Reading this post, I thought of all the mothers who have children who are out of the box, who don’t fit the typical mold, who have needs that are not quite met in our schools or community programs.
You probably know mothers in this position. Maybe you are one.
This mother is asking everyone who can relate to this post to contact her (her email is at the bottom). If her words and experiences touch you at all, consider sharing this post. Sharing our difficult experiences can be immensely valuable, and is the first step toward making real change in our world.
On that note, I have another post up on Hevria today, about how being self-absorbed and focusing on ourselves can be more than narcissism. It can actually change the world, if done correctly.
An open letter to the community
“We can’t be as alone as we feel. Yes, our child is special, but he can’t be the only one like this, can he!?” This is what my husband and I keep saying to each other- where are the other parents? why are there no programs for our child? He’s special… but not special enough?
Our ten-year-old son is smart and sensitive. He cares deeply for animals, loves little babies, and watches out for the underdog in a group setting. He can be hyper focused on one activity for a long time and can have an extremely hard time focusing on anything that doesn’t hold his interest. If you met him in the park on a Sunday afternoon you might see him playing a pickup football game with a group of boys and he would probably seem like a neuro-typical child (as some might say ‘normal’) but if you watched him in a classroom alongside his peers you might think he’s chutzpadik, or learning disabled – neither of which he is.
Our son has Asperger’s, or high functioning Autism, or PDD (depending on the mood of the DSM that year). Diagnosed seven years ago at age 3, he could not make eye contact, or play with other children his age for more than a few minutes. Today he is a student in a mainstream classroom, he has friends, and he’s able to go to a restaurant and politely order himself his cucumber sushi roll, and no one would know it took hundreds of thousands of dollars’ worth of therapy (thank you NYC) to get him to that place.
The yeshiva he attends has been wonderfully accommodating. They have made allowances for his full time SEIT (Special Educator Itinerant Teacher) support in and out of the classroom, tried to fit in his other therapies when possible, had their teachers coordinate with his team,… all to try to “make it work” in Yeshiva. And it kind of is working – no one is asking him to leave. So… success, right? Wrong.
For years we’ve been saying at our meetings with the therapists that we feel it’s just getting harder every year- how will this continue? And they told us that it’s working-and obviously he’s way too high functioning for Special Ed, so we just keep making it work- because it’s good enough. Well, now we say ‘getting by’ and ‘making it’ is not good enough. A child should feel successful, and wanted. Right now he’s tolerated.
We have spent 7 years training him to fit into a box that he simply wasn’t built for. Don’t get me wrong- we do not regret all that we have invested in him. All these years of ABA and social groups and one on one learning have given him the ability to have friends and function in the regular outside world. But this kind of therapy can only take him so far. At ten years old, he’s looking at another six years at least in a classroom setting where his self-esteem is being damaged on a regular basis.
To paint a picture: its 45 minutes into the Rebbe’s Mishnayos lesson. Some of the kids are involved, some probably a little bored, but they’re managing. Our son is concentrating so hard just to do all the things he has to do at one time – not fidget, not space-out or fall asleep, keep the place, even though his hand in that position is so uncomfortable. Try so hard not to obsess about the fact that twenty minutes ago Rebbe said something that didn’t make sense to him … and then suddenly Rebbe is calling on my son and his dread turns to panic and the only thing he can say is a flat emotionless “I don’t know”, leaving the Rebbe frustrated and my child embarrassed.
In the meantime, his classmates have picked up on dozens of cues he has missed. Like when the kid near them turned the page, they all realize to turn the page too. Right over my kid’s head. Or when the Rebbe had been walking towards him and speaking in an increasingly loud tone in his direction which all the other kids understood was meant specifically to ‘wake him up’ but no, he did not pick up on that at all.
Then later during recess when the kids are trading snacks or choosing teams, something happens that he perceives as highly unfair. He then retaliates impulsively in a reaction that is out of proportion and makes everybody mad at him and he has no idea why. Then later the teacher is referring to something in the previous lesson which he missed because he was out with his SEIT, so he just checks out of that lesson entirely and puts his head down…
When he comes home from school and we ask him how was your day we get a practiced “great” because that’s what he’s supposed to say. But for the next 2.5 hours anything we ask him to do is responded to with so much anger and self-pity we have to ask ourselves what is causing him so much pain. On the rare occasion that he is willing to express emotion we find out he feels guilty that he is letting down his Rebbe. That he feels he’s the stupidest kid in the class (He is most likely one of the smartest) that he feels he is being bullied (he’s not, but this is his perception).
In a day that requires so much effort to just ‘make it’ it’s no wonder he has no energy left to put forth into the world. We start wondering what this lofty goal is worth. Why put so much effort and have so many professionals working so hard to fit a round peg into a square hole for this ultimate dream of our child being in a mainstream yeshiva? Why is this so worth fighting for?
The fact is we have finally realized that the process of trying to fit into this system was beating him down and we want to make the change to a place that can build him up. Better that he should feel ‘different’ and successful, than feel like a failure among typical children.
We thought making that decision was the hard part. But sadly, we found that none of the programs out there fit our child’s needs. We went to visit a self-contained special education school with a fabulous classroom structure. 6 boys and 2 Rabbeim and completely individualized educational programs. Finally, all his mandated therapies (OT, PT, speech and counseling) would all be woven into his schedule and they would work with him to create a curriculum that would meet his specific needs exactly.
We were getting very excited until we were told that the children there have ‘major emotional and behavioral issues’ which we were told could be highly detrimental to our son, who would feel very out of place, and likely learn negative behaviors from his peers. We then visited an inclusion classroom in a mainstream yeshiva for children with learning disabilities. The Rabbi who led the program was so fabulous we nearly signed up on the spot. Until we realized our son did not have a learning disability and would be cognitively so far ahead of his classmates he might feel even worse about himself than he did in Yeshiva.
We spoke to professionals. They referred us to other professionals, and everyone agreed with the concerns in each of the places. They all commended us on our approach as parents. The message across the board from the people running these programs and the people we turned to for advice, was “you are doing the right thing. You are asking the right questions. You are very good parents- but we don’t have experience with people like you. Most parents are very happy to stay in the mainstream system as long as they’re not getting kicked out!”
The bottom line is – for some reason, we as a community have created a culture where we hold on to the dream of mainstreaming until our child is so damaged and beaten that the school kicks them out and only then do we resort to a Special Ed environment. Sadly, so many parents have chosen to sacrifice their children’s happiness for the loftier goals of their being ‘normal’.
Here’s what we have recently realized: Hashem did not give us a special child so we could try to make him un-special. Our mission as parents is not in fact to ensure that our children grow up to be like their peers and easily get good Shidduchim. Their purpose is to be as close to Hashem as they can. In order to feel close to Him they have to feel fulfilled and happy. To love learning they have to feel they can excel at it. To love Hashem, they have to feel worthy of love themselves.
Then we started thinking. There are probably so many other parents like us, and hopefully some of you are out there reading this right now – and you’ve been thinking “I wish there was a program for my child, but he’s so unusual – there just aren’t enough children like him”. Well I’m here to tell you: YES. THERE. ARE.
If only more parents would come out of the woodwork and demand a program for children like ours, there would be one! I know my son is not the only ten-year-old boy in NY who needs a yeshiva, but does not have the stamina for a typical mainstream classroom, and yet does not have behavioral or cognitive learning disabilities.
I wish you were reading an article right now about how we decided that a program didn’t exist so we made one for our son and look how successful we are. No, sadly, I would not have the first clue how to do such a thing. But I’m begging you – if you or anyone you know has the means to make real change – I’m here to tell you it’s needed. It’s warranted. These children need a place to learn. A place to grow and feel loved and appreciated. A place they can excel and make friends and feel good about their Yiddishkeit. They are special children, and they deserve a special education.
If you have a child whose needs are not being met within the programs that are currently available, please email SpecialEnoughChildren@gmail.com.