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i would like to start a blog on autism including any topics that have to do with autism.
Asperger’s syndrome is high-functioning autism.
So, start one.
Or did you have a specific question?
The Wolf
my son was diagnosed with aspergers. he’s very high functioning. he’s also much more spiritual than most children his age. he looks just like everyone else. but things that regular children are born with, (certain tacts) aspies kids need to learn the rules. we are very thankful for our special son.
Do you have to inform his teachers and his friends?
Can anyone with experience dealing with it, describe some of the symptoms of Asperger’s?
Also, as I understand people who have it can be a genius with an intense focus and expert knowledge in a field.
symptoms vary of course. big lack of social skills. again, all certain tact how close to stand next to one another, loudness of voice. most people pick up these cues automaticlly. an aspies child needs to be taught these cues. they are, extremely, extremely intelligent. as are most autistic children that you read about. my son draws amazing. loves science. has come up with some really brilliant ideas. yes, it’s a very big challenge. there is very good literature that has come out on aspergers. I do not hide the fact from family and friends and neighbors that our son has aspergers. there is much more awareness now on the subject also.
People in general as a rule need to learn to be less judgmental and more helpful. And being helpful can mean to wait to be asked and not butt in. It also means to hold your tongue and teach your children to do the same.
In a school environment whether a child is of special needs or just shy and awkward sometimes a teacher or Rebbe should assign a child a “special friend” to be their guardian angel and assist them in their adjustment periods. This friend can last the year, or be friend of the month or whatever the teacher decides to do for that particular class. The mechanech does not have to announce it in public but can speak to another student in private and tell them s/he has a special mitzvah assignment for them that is private just between the two of them and they musn’t divulge the secret to anyone but Hashem will definitely reward the child for the mitzvah. And that a special note will be sent home to the other child’s parent that “your child has a new friend his/her name is “x”.
Who do you think will gain more from this experience in the end?
Wow, I’m glad I found this thread, I’m not sure how I missed it. I just started a thread this morning wondering if there were any parents of special needs children in CR, this answered that question 🙂
My daughter is six, she has sensory processing disorder but we think if she would be diagnosed again they would diagnose high functioning autism.
Clothing is a big sensory deal for her. If it has seams she can’t handle it, she says it hurts. Socks were a HUGE deal until we found seamless socks from an autism website. She’s only every worn skirts out as that’s part of the tznuis standards we hold as a family. She’s been struggling this year with clothing a lot more than ever before. Now that it’s getting colder she can’t just wear bloomers and a skirt, it’s not warm enough but she can’t wear sweat pants or other long pants underneath her skirt because it’s not comfortable and gets “bunched up”. In previous years she was okay with long pants under her skirt.
She’s been watching her brother and friends play outside today from the window, accepting her defeat. When they ask her to come out and play she just says “I can’t”. It breaks my heart for her. Even if we were to let her wear only pants out and skip the skirt, she doesn’t have pants that are comfortable for her anyway.
I don’t know that there’s a right answer to this… Do we let her wear pants realizing that Hashem made her with these struggles? Or do we stick to our tznuis rules and let her be miserable until she gets used to it? We’ve spent so much time in prayer over this and just don’t feel settled in one direction. I know as Noachides we’re not bound by Orthodox rules of tznuis. It’s a longer story than one sentence can hold, but we came from mennonite background (kind of like amish) and are headed toward conversion, it doesn’t make sense (for my wife at least) to wear pants, our devotion to Hashem and reasons for modesty haven’t and shouldn’t go backward.
I read somewhere that an Orthodox autistic boy could only fall asleep listening to his ipod, the Rabbi understood and told the family it was okay if they turned the ipod on before Shabbos and let it run until the battery died. But how rare is it to find someone compassionate? I would think the “typical” response would be that the child just needs to learn to deal with it, or in that case, fall asleep without the music. At least that’s the type of responses my wife has received on “regular” Jewish parenting forums.
That’s just one issue we’re facing right now, I have so many questions about how special needs fits into Judaism… Do any of you eat a GF/CF diet? How does that work when visiting other people’s homes? I have more questions but will save them for later.
I guess even just knowing there are other families out there is comforting in itself. I think a blog or forum dedicated to this would be wonderful. I build websites (and graphic design) for a living, and would be more than willing to help and donate my time with this in whatever capacity would be helpful. I have plenty of server space. 🙂
Sean Ben Noach
Sean Ben Noach
Hello Sean,
I have a son who is on the spectrum.
My oldest child has been GF for almost 10 years now (she’s not on the spectrum but has celiac, confirmed by biopsy). When we eat at other people’s homes I just tell them that my oldest is GF, explain a bit about it, and offer to bring my own bread/ matza. We are not casein-free at all though.
I don’t know what to suggest about your daughter’s sensory issues. Have you considered leggings or tights, which would be less likely to bunch up? Culottes may be difficult to find but might work for her.
Regarding whether it would be OK for her to wear pants only: Perhaps you could find a Rabbi who is experienced with special needs children to asnwer those questions. Posters on “regular” parenting forums simply may not understand special needs. He may tell you that allowing your daughter to wear pants due to her sensory issues is still consistent with your wife’s move towards greater tznius in dress.
I truly admire your efforts and wish you good luck.
@anon – Thank you for your response!
We’re meeting with our Rabbi next week (new to the area of Richmond, VA) he’s been great through email and no doubt will be very nice in person too, it often takes someone with special needs experience to really understand that it’s not just the child being stubborn, when my daughter’s socks “hurt” they really do hurt as I’m sure you can sympathize with. My wife had the same sensory issues and can remember her clothing feeling like nails or fire. I would LOVE to find a Rabbi to talk to that has experience with sensory/autistic kids, any suggestions?
Perhaps such a Rabbi would be perfect as a contributor to Mosh3’s new website! 🙂
Hello Sean,
I don’t know of a Rabbi who has experience with autistic kids because I haven’t had those sorts of questions.
It seems that your wife’s past sensory issues are not interfering with her dressing in religiously appropriate ways today. It’s possible that allowing your daughter to wear pants now will not preclude her from wearing skirts and dresses when she is older. Of course I’m not a Rabbi, but it seems to me that if she takes a little longer to “move forward” in terms of her dress this is not at all the same as moving backward. Just as your daughter may need more time to get used to different textures, sounds, and other experiences than do other children, she may also need more time to become accustomed to wearing skirts/ dresses.
Sean – I think you are underestimating the Rabbis these days. I thank many are very understanding of special needs. The sign of a good Rabbi (IMHO!) is one who doesn’t answer what he doesn’t fully understand, but DOES have a big index card file full of numbers of colleagues who DO understand the issue being discussed! And which he doesn’t hesitate to use as needed!
My son has sensory issues as well – tho not tactile – more proprioceptive and vestibular. he looks ADHD, with all the fidgeting he does, but is not. it does take a lot of explaining.
he also has some of the lack of pragmatics and social cue recognition mentioned – also not to the same degree. That requires explanations to adults, but I find kids either accept him as is, or they don’t – and explanations don’t help.
I have an 18 y.o. stepson who has nonverbal learning disorder, which is somewhere on the autism scale. He doesn’t read body language or gestures very well, or understand, for instance, when someone is annoyed with him.
He was undiagnosed for a long time, and has grown up very angry, very uncommunicative, and very embittered towards his parents. He is in a bad place, and won’t ask for or accept any help from anyone who can help him.
one such person is rabbi perlow on 16th ave and 46th street If you are referring to Rabbi Yaakov Perlow (Novominsker Rebbe)his phone # is 7184361133.
If I remember correctly his late Rebbetzin was a mental health professional. In any case he has the reources of major Org’s
at his disposal, aside from his own background as Rav.
Sean, may I suggest the help of a professional seamstress who can adjust the clothing to make them comfortable and maybe hide the seams with a patch of softer cloth to make them lie flat and smooth and be covered by extra soft fabric which will not induce pain on your daughter.
In addition maybe the website you bought the socks from can guide you where to buy pants, leggings or tights from. But most probably the best bet is to find a good seamstress and a good fabric store so that you can buy fabric that is very, very soft. If you can’t find fabric soft enough, try taking a very soft sheet like 600 count cotton and make leggings or pants from that.
Thank you very much everyone for your suggestions and referrals. I appreciate your help and it’s great to know that we’re not alone 🙂
Moshe3, sorry I kind of hijacked your thread 🙂 If you would like help setting up a website, my wife and I are very interested in helping or hosting the site for you. We both think a Jewish site with articles from parents on autism and special needs would be a great resources to all.
I just remembered there are toeless tights so that would mean there are no seams, right? I hope that is of help to someone.
http://www.jstandard.com/content/item/autism_the_pain_and_the_progress/ This article might give you some leads.
http://www.jccany.org/site/PageServer?pagename=resources_compass_splash. And here is an organization for autism and aspergers.
Try Rabbonim who are entrenched in medical issues such as Rabbi Moshe Tendler in Monsey. Try calling places like HASC who can give you a list of Rabbonim that are involved with medical issues.
Sensory issues are to be taken seriously.
hi Sean ben Noach.
My daughter has similar challenges but they are improving with age. It would be a good idea to go ahead and have the testing. In various states and cities programs and services are available but require an “official” diagnosis. The sensory issues, in our case are related to receptive issues. that is the ability to understand, process and prioritize information. A different version of this manifests itself in expressive delays. That relates to the ability to communicate. both of these are within the spectrum and can co-exist with other common symptoms. some of these symptoms or issues are more than visible at home and can be concealed in public. be patient with people who do not believe you when you tell them your experiences at home with your daughter.
How does someone with asperger’s handle shidduchim? I know someone who wasn’t diagnosed until he/she (I don’t want to specify for privacy reasons) was an adult because his/her parents were in denial. It was very sad because he/she went through the regular school system knowing that there was something wrong with him/her and not knowing how to handle it because nobody could help him/her if he/she wasn’t diagnose. Plus, he/she knew that everybody thought he/she was crazy and it wasn’t even his/her fault. Now that he/she has finally been diagnosed and is getting some help, he/she wants to know how to go about shidduchim…
He/She’s have a very hard time with shidduchim.
Been there personally, professionally and as a parent. I spend as much time educating parents on sensory stuff as helping the kids manage. Each kid is different, even though they are so alike, so not all advice is generic. I will throw out a couple tricks I have used with success. First, inside out sock are often as good as seamless. A shoe that is 1/2 size too big will sometimes prevent the sock from being annoying because the toes have more room. I have dealt with tzitzis and button down shirts too. I find there are generally three rules of thumb that I hold consistent.
1) Never avoid the dislike but never force it. You have to ‘keep their toes in the water’ to prevent developing anxiety over the dislikes.
2) Sensory issues on a kid with sensory dysfunction should be treated ASAP by an OT. If you get a good therapist it always works at least a little. If it doesn’t work, switch therapists.
3) Sensory issues on a kid on the spectrum are harder to eradicate but can be ‘accommodated’, ‘dealt with’, ‘worked on’ (choose your buzz word)
The most success I have had is when the child trusts me completely that I will never force these ‘toxic’ things/feelings on him. For those who can understand the language, I tell them that there are things they CAN’T tolerate, and there are things they would rather not tolerate (but in a BIG way) and I will definitely make them do things they prefer not to do but I will NEVER cross the line. When they really trust, they will sometimes meet me an inch at a time.
Sorry for the lecture, I love this subject and autistic kids. I think I was either a gilgul of an autistic person or I was supposed to be one but wasn’t. I think they are the most spiritual beings.
Here’s my huge hashkofik quandry. I believe that it is no coincidence that if you list the things that the sensory kids struggle with the most:
dress clothes
button down shirts
belts
socks/stockings
sitting for long periods
crowded/noisy places
you will have a list of how a frum person needs to dress, behave or spend his day. Is this the challenge of our generation?
Tanta know someone who works on pronouns with his/her girl/boy students all day/night long/short.
Come on! I’m trying to protect someone’s privacy and you’re making fun?!?
Making fun/bore? I/we wouldn’t/would do that/this.
papa I too think your joke is in very very poor taste. You take your self appointed role as Court Jester too seriously.
Sean is a very intelligent person who takes life and his responsibilities seriously,and asked for input on an extremely imortant and sensitive matter.
I too thought that the Ben Noah in his nom de plume was a joke of sorts. After I rcvd his reply (see below) to my Q on a different thread about “peek” I did a Google and found his post #16 @ http://www.chabadtalk.com/forum/showthread.php3?p=165705 I was very impressed.
Noahides are very careful not to name “clergy” or anything like that, we would never want to be considered a religion as that could be avodah zarah, we follow the G-d of Torah and the laws laid out for gentiles. We can take on other mitzvot as we see fit as long as we realize it’s not a requirement for us and if we do it properly (Rambam).
There are certainly some gentiles who are “teachers”, I’ve heard people call them “Moreinu” but that’s as close to a title as a gentile gets. But really, 95% of the learning I do are under Orthodox Rabbis (mostly online), I have a Rabbi about an hour away from me that I can go to for more personal matters if needed and we’re invited to attend services whenever we wish.
popa – pas nisht
chad pami:
Are you saying you are a Noahide? That is so cool. Sean is also? Wow! Let’s start a thread to talk about that.
Mosh3 – Sorry for being absent from this thread most of last week. I’ve been under some tight deadlines and this coming week won’t be any different. Didn’t leave much time for forums 🙂 Please feel free to email me about your website off list if you would like my help with it. I’m definitely interested and have some ideas.
email: sean [at] cvillenoahide.com
Downsouth & Shneinu – Yes, there are programs available here in our state (VA). Our daughter was seeing an OT in Maryland when we lived there a few years ago. She hit the milestones they were looking for and “graduated” the program. We’re in a situation right now where we’re self employed and make too much for state assistance in this area but too little overall for insurance. A diagnosis out of pocket would be very expensive and not something we can afford to do. The OT back then had a lot of great ideas and many still apply even though our daughter is much older now. It’s the new issues, like modesty and increased sensitivity to clothing that has been tripping us up.
Poppa – Chad isn’t Noachide, but I am 🙂 Unless of course you want to rightly say that we are all B’nei Noach!
OK. Popa does not think he offended the OP. Popa was only making fun of “jobless” for writing an entire post in he/she.
There was no reason for anyone to think I was being unsympathetic to people with autism. I was perhaps being not nice to jobless.
jobless: I hope you did not mind. I would not mind if someone did it to me.
EDITED
My son was on the spectrum and had sensory processing problems. Touch was painful to him, did not like when people hugged him and would yell all the time . He also would walk right into people and walls , not being able to calculate the distance between things.
Reading the book “the out of sync Child” helped me understand what was going on with him.
B”H , he no longer has the problem with his eyes ( he also could not focus ,so he couldnt read) He reads well and most of his sensory problems are gone. he is also not spaced out anymore and understands social cues.
Most of these kids problem start with the digestive system. That is what I fixed for him first and eventually built up his brain with nutrition. Just like we dont give a diabetic person occupational therapy, autistic kids need the underlying problem fixxed. There has been a lot of success like I had with my 7 year old. But many people will say it is too hard.
Sean Ben Noach- I started to put together a website but do not have too much knowledge about building a website and it did not work out . if you would like to help I would really appreciate it.
The website is basically on how to live a healthier life and avoid all of these problems and how to fix them. We want to have a forum for all different disorders and what people have done to fix them.If you are interested , let me know. We can definately use some more help.
Sean Ben Noach; I’m pleased to hear that you (& your family)are true B’nei Noach. It’s wonderful news that you are taking a very strong interest in enhancing your knowledge about Judaism. I’m sure you are thankful to Hashem in spite of the circumstances of your child. You consider her a blessing. Keep up the good work. One major point. For general guidance it is very helpful (in addition to reading books on the subject) to consult websites with discussion on the subject you are interested in. However, when you have a specific question or a set of specific questions, it’s always helpful to consult a specialist in that field. For example, on Medical/Special Ed a renowned expert’s advice in that field should be sought. Same goes for any questions about religion.
@chance – The Out of Sync Child was a big help to us too and absolutely agree with your idea of where spectrum disorders originate from. B”H none of our kids our vaccinated and we’ve had a very good natural doctor to help with detoxing from heavy metals that he feels we have picked up.
My daughter’s recent flare up over the last year we’re sure comes from an old house we were living in for less than year, we did all we could to encapsulate lead and was told by all our friends it would be fine, we were wrong. We got out of there as quick as could. We’re still trying to slowly detox the low levels of lead that have affected her and my youngest.
As to a website, here’s my idea and “pitch”. I would love to see a Jewish leaning site on spectral disorders. Where there are articles on various topics within the spectrum. The site would have multiple authors with various perspectives and experiences with having children within the spectrum and being Jewish or B’nei Noach. It would essentially operate like a blog, but would be categorized in such a way that it, over time, becomes a bigger and bigger resource. Each post/article would show up on the main page and at the end of the article would be a quick footer bio of that author, a couple sentences saying where that Author is coming from:
Example:
Sean is a father of three young children in his B’nei Noach family. His youngest two have spectral disorders which they have taken a naturalistic approach to treatment through diet, therapies and chiropractic/CST care. They live in the mountains of central Virginia where they buy as much food locally as they can.
You very quickly have an idea of where the author is coming from, can click on the author’s name to find more articles/posts from them. A forum is also a very easy thing to implement, and like the coffee room, a good way to get people to keep coming back.
I have a packed week this coming week and probably won’t be checking this thread, but if anyone is interested in coming together on this project, please email me: sean [at] cvillenoahide.com
My wife is a good writer and would probably be one of the authors, I’m not that good with getting my thoughts on paper, it takes me too long! 🙂 If we get a couple authors together, we’ll talk through email and make it happen. I would love for a Rabbi with spectral disorder experience to be a contributor, I know you all gave a couple names, does anyone want to approach one of them with the idea?
@poppa – I forgot to say, I didn’t think you were being offensive, especially not to anything having to do with Autism.
Popa I think you would/wouldn’t mind/body if someone/two did/didn’t it to you
good/bad jew/goy:
I/you deny/admit it/what.
Tanta also knows someone who works on opposites with his/her girl/boy students all day/night long/short.
Maybe this thread will be his/her newest therapy material.
@chance I am not sure you used all the alternative things I wrote maybe some of them, perhaps I was projecting what I would. Good luck with launching your website.
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