Autism/Sensory Issues and L'vush (Kippa, Tzitzis)

metacognizant

Mon, Feb 22 2021, 1:25 pm

I have a 4 year old with Autism. He was diagnosed with ASD through a DOE Evaluation. We're trying to get him a full developmental neuropsych evaluation as well... right now he has an appointment for October (!!). My son is very special and challenged in ways we do not yet fully comprehend, though we can guess, because my husband is Autistic and has ADHD as well. (Periodically I "blame" my husband for passing on these genes but really he's the world's best tatti and I'll take the bad with the good.)

A lot of my son's issues are sensory and also have to do with rigid patterns of thought and behavior. Like if our dog sniffs his shirt he'll immediately strip naked because his clothes got "wet." He usually refuses to use the potty *in* the bathroom because the floor is too hard... instead he'll take his little potty into the bedroom, put it on the bed, and poop there. I think he prefers the "bounce" or give of a mattress below the little potty when he's pooping. Sorry if this is TMI.

My point is that sensory factors rule certain aspects of his life and really define what we have come to call "normal" in our house. My husband and I focus on maintaining and enforcing rules against harming others or causing damage. For example, no matter how overstimulated or frustrated you get, you can't hit anyone, bite or kick, throw anything, break anything, dump anything, etc. It's a constant effort to enforce these rules with my son, but his behavior in these areas is slowly getting better, and it seems to works well that we have LOW but CONSISTENT minimal standards.

The reason I'm writing this thread though is that, until now, wearing kippa and tzitzis has not made it on to our list of house rules. My son is the oldest so he doesn't have a big brother around to copy. And even though my husband wears kippa and tzitzis, and virtually every other boy and man he sees wears kippa and tzitzis, my son seems to not notice. I think part of his Autism is not really having the motivation to imitate others in his community.

After his upsherin we tried starting each day with kippa and tzitzis, but he'd immediately rip the kippa off, and he wouldn't use the toilet at all while wearing tzitzis. I think the things that other boys might find easy, like holding their tzitzis out of the way with one hand while using the toilet, are seemingly impossible for him. As it is his toilet training was only really complete well after his 4th birthday, and we still sometimes have power struggles about it. So, with the blessing of his current school, we gave up on tzitzis. And while we send him to school in the morning with a kippa in his backpack (since it's winter he goes to school with his coat hood on, and the kippa doesn't really fit under the hood) and the hope that his teacher will put the kippa on his head when she takes him in to the classroom, I am pretty sure that the kippa just sits in his backpack all day.

My son also will not wear a face mask, which closes SO many doors to him during the pandemic. He won't wash neigle vasser because he can't deal with getting wet at all. Basically if an activity involves a sensation for his body he can't handle it.

Today my husband is taking my son for an interview at the yeshiva he's supposed to attend next year. I asked my husband to make sure my son wears kippa and tzitzis to the interview but honestly short of using brute force I don't think there's any way to make that happen.

My son's IEP included twice a week OT, but he's not getting any. I nag the special ed coordinator at his school and the DOE liaison about it almost every single day. They say they have not been able to find an OT for him. I am at my wits end.

If you have a special needs child with sensory issues like this... does it ever get better? Am I dreaming to hope that my son can just dress like his peers until he's old enough to make rational decisions about it? Like, if he was a teenager who had a conscientious objection to wearing Jewish clothing, OK, whatever, I went through that phase too (it lasted 14 years!). But as a small child I'd like him to learn to do mitzvas and not be held back by a sensory barrier. That's my goal as a Jewish mother but I have no idea how to get there!

amother

Seashell

Mon, Feb 22 2021, 1:38 pm

Yes it gets better!!!
But only if you go where he’s at.
He has his needs and it’s his body and his comfort zone- the more you push the more he’ll get frustrated and push back
As you continue on this journey he may find alternative things that are ok for him: my son started off sans kipah and graduated to a baseball cap and now - because he decided it’s important to him- keeps his kipah on all day!
Most important is the work we need to do on ourselves to totally accept our children and help them understand what their bodies our telling them
It’s a tough journey but so rewarding.
I’ve totally changed through it

amother

Orange

Mon, Feb 22 2021, 1:56 pm

DS on the spectrum also would not wear tzitzis.
He is 5 now and will ask for them occasionally.

You need OT asap. Take him to a local provider covered by insurance once or twice a week.
Maybe his SEIT can take him if it is close to his school or if you provide transportation.
Some therapy places provide transportation or ambulette services.
Especially if you have an official diagnosis.

We take our DS and switch off between DH, Seit and myself when necessary.
It makes the world of a difference.

amother

Aubergine

Mon, Feb 22 2021, 2:05 pm

I do think it will get better. There's a beautiful video on Chabad.org of an autistic boy wearing tefillin - after a lot of work - at his Bar Mitzvah.

One random idea that jumped out at me from reading your post, maybe get a foam pad to put under the potty in the bathroom.

I don't think you should feel bad at all about the tzitzis issue. I might try to put on the kipah for a moment (with the understanding that it will be promptly ripped off) before eating, before davening, etc. just to keep it in his framework of normal.

But this is where he is now. As he becomes more comfortable in his own skin, and more able to tolerate sensory experiences, he will eventually be able to handle "levush." You may have to be flexible - a "Na Nach" kipa might be more comfortable than a regular one, undershirt tzitzis instead of cotton or wool, etc. but you should be able to find some way to make it work when he's ready.

In the meantime, just keep loving him and helping him, it sounds like you (and he) are doing great!

bigsis144

Mon, Feb 22 2021, 2:11 pm

You sound like a great mother with a balanced and loving approach! 💗

My eldest was very sensory and only wore a baseball cap from age 3-6, not a kippah. I got him the cutest little newsie-style hat to wear to my sister’s wedding because even then he only wanted a hat. His kindergarten Rebbi didn’t put any pressure on him, and I think by first grade, with a little gentle encouragement from his teachers and wanting to fit in with his classmates, he was ready to wear a kippah.

He’s not autistic, but he was and still is very sensory, now he’s 11 and he wears a kippah and tzitzis (as long as they fit right) every day, but he wears a white polo shirt and black sweatpants on Shabbos because he hates “stiff” fabrics.

My 8 year old hates wearing underwear under his soft sweatpants, let alone tzitzis 🙈. And he will wear a kippah for a minute or two before it falls off and he loses it, so especially inside our house I stay off his case. If I happen to find a kippah on the floor and I’m walking past him, I’ll plop it on his head. And I remind him to wear one when he’s eating, but no way could I expect him to wear a kippah from when he wakes up to when he goes to sleep.

This child is in public school, and I felt that a kippah was important to his identity when he was the only Jewish kid in his class. So I made a big effort to buy him fun and exciting kippahs, anything to make him be proud. But DS is very socially anxious and even innocent remarks like “you dropped your hat thing!” or “what are those strings hanging out under your shirt?” made him feel like he was “being made fun of”. And I knew I had to be gentle and careful so that DS wouldn’t feel like I was forcing anything on him.

amother

Powderblue

Mon, Feb 22 2021, 2:32 pm

Definitely get OT through insurance, twice a week if you can. And ABA, as much as you can.

It gets better.

My 14 year old will wear kippa and tzitzit, and this year even has gotten used to a hat and jacket. I still am not sure he always remembers underwear.

He still changes into PJs whenever he can get away with it.

metacognizant

Mon, Feb 22 2021, 2:39 pm

I actually just was able to get an appointment for a much sooner neuropsych eval. Now instead of next October we should Iy"H be able, through our insurance, to get one in March. I'm hoping the psychologist who does the eval can point us in the right direction as far as therapy after that. Is "sensory integration therapy" a real thing... like does it have protocols that are standardized? Is this something that psychologists will refer parents to? Or would I need to get a separate OT evaluation? My husband believes we should start with a psychological evaluation and go from there. I'm trying to do things on the medical/insurance side and focus less on the DOE side (though I'm doing that too). Does anyone have advice on the "process"?

metacognizant

Mon, Feb 22 2021, 2:41 pm

amother [ Aubergine ] wrote:

One random idea that jumped out at me from reading your post, maybe get a foam pad to put under the potty in the bathroom.

That's a really good idea, thank you!

amother

Tangerine

Mon, Feb 22 2021, 2:59 pm

amother [ Seashell ] wrote:

Yes, yes, yes! My sons have ADD with sensory disintegration, and they did not wear yarmulkes and tzitzis until 6 and 8 respectively. One also tolerated a baseball cap until he was ready for a yarmulke. It will happen, but on his own sensory time table. This child was, as the poster above said, put in your life to teach you absolute love and acceptance for another human being. As he grows, your ego will be challenged in so many ways, but you will become so humble and beautiful on the inside. Welcome to the humble and accepting club, it's the spiritually best place to be!

amother

Navy

Mon, Feb 22 2021, 3:10 pm

Give it time
My autistic son did not consistently start wearing a kippah till 5 and tzitzis till 8. Go at his own pace, make sure he gets his OT, and he'll get there. Even now, at 10, he's picky about which tztzis he'll wear, so I have to make sure to have enough of the type he likes.