Sort of a mess right now...

amother

Thu, Aug 22 2019, 7:55 am

My 8 year old with ASD has been attending a girls school. The school is not aware of her condition. She is very high functioning and we are trying to avoid causing a stigma or worse social issues for her. She receives her ABA services at home. However, she had a very harsh teacher the last year and developed a mental block for that entire subject. It was extremely difficult for us as parents and for the therapists to get her through the year. She also needs a lot of help in the area of socializing. She is awkward, over-sensitive and many time misunderstands situations. Again, very difficult for us to assess. So we spoke with the Morahs, without saying ASD, we just asked very detailed questions about her social environment. The Morahs blew all the questions off, oh the girls are fine. Oh she's doing fine. I know she's not. I know she cries often at school because of social misunderstandings or because of things simply not going the way she believes is right. There is surely more that I don't know, and need to in order to help her.

Fast forward to now. We've paid for the next year. Her school supplies are already ordered to go to the school the first day. She will have new Morahs. We are all set up on this path.
However, I have intuition that I need to pull her and put her in a homeschool program. I've fully researched online schooling programs so that I won't need to worry about the homeschool laws as much. My husband is not convinced. He feels we should send her and see how it goes. He's concerned she will not get enough socialization in an online school environment or that getting her into social groups will be an extra burden on my already overwhelmed schedule. These are reasonable concerns. However...my gut is what it is.

She just had her check up with her ASD dr. We discussed how she shut down (she also suffers from severe anxiety). The dr wanted to know our school plans. I told her what we were doing without mentioning my feelings. She said, "you will need a plan B. I know you want her to be in an environment with her religious peers, but this may not work out for her best interest. What's your plan B?" So..wow. I told her that plan b would be an online program done at home. I would increase her home ABA hours, and would have to somehow find her social time. She said, "that's a very good plan." So, the dr and I agree without even discussing my feelings directly. My DD was in the room for the dr conversation, and she was very enthusiastic about the online program idea. She had no concern at all (which I thought odd) for friends she would miss, etc.

So now I'm in a dilemma. I have my gut feeling eating at me. Husband says, keep current plan. Not to mention, we've paid for her school already, some $12k. If I pull her before day 1, they have to refund tuition at least I assume? And if we "try it" and it does her more damage, I'll of course pull her out, but then am I out all of the tuition? How do you get socialization with frum peers outside of school? Are there homeschool play groups or something? Our shul doesn't really have kids her age.

I guess I'm sort of venting, sort of looking for ideas, advice, chizuk...pretty much anything. As named in the title, I'm a mess.

amother

Puce

Thu, Aug 22 2019, 8:10 am

If she does go to school, it is unfair (to both her and the school,) not to share pertinent information. You can't have certain expectations if you don't tell them what is needed/why.

amother

Cerulean

Thu, Aug 22 2019, 8:19 am

I don't know your school's policy but don't make assumptions about when and how much tuition would be refunded. If that's a major deciding factor you should clarify that with them before proceeding.

That said, if you decide to try out school, you probably need to be more proactive about letting the teachers know what she struggles with. I don't see why you need to share a diagnosis, but it's imperative that they understand that she has social deficits and anxiety and that you're getting help in both arenas. You need to be forthcoming about sharing that, and also letting them know how to help her. They're not necessarily trained in teaching students with ASD, but they should be equipped to follow any protocols set up by her therapists. Most teachers really do want to help, they just need guidance to do so.

Also be aware that it's very easy for some kids to really isolate themselves socially. So if you decide to homeschool you'll have to be vigilant about providing appropriate opportunities for socializing with peers. Social skills can't be taught in a vacuum; she needs ample practice to make them routine. Most of her peers are socializing at least a couple of hours daily with kids their own age.

chestnut

Thu, Aug 22 2019, 8:29 am

I agree about letting the school know. If not the diagnosis, her struggles. It would also be beneficial for the therapist to be in touch with the teachers and guide them.
Honestly, I think I'm agreeing with your husband. Why not try the school and pull her out if doesn't work? School is the best place to practice the social aspect.
Tuition is a problem. Any way to find out without telling them your plan B?

amother

Plum

Thu, Aug 22 2019, 8:31 am

I worked in a special ed school last year and was an aba para. Based on what I saw there I would not put your child back in a regular classroom with an ASD diagnosis and aba services. I also don’t think it’s fair to the teachers not to be upright with them.

But the bottom line is in terms of your daughter I saw first hand how much better off she will be not in mainstream. One of the students had social emotional issues and was attempted to mainstream part of the day. It was a complete and total disaster.

behappy2

Thu, Aug 22 2019, 8:33 am

You can't expect the school to help your child if they don't know that your child has special needs. Second, There are schools that cater to these children. Are there any such schools in your city?

oneofakind

Thu, Aug 22 2019, 10:08 am

I highly doubt the school will refund any tuition at any point but in terms of your daughter, the only socialization for frum girls will be Sunday clubs so basically a whole week she gets no social interaction with peers. Is she a candidate for some medication for her anxiety? Is there a school social worker who could possibly be eyes on the ground to see what's really going on and advocate for her and collaborate with the teachers to get her to make one friend at least? Although it's tempting for you and your daughter (especially because of her anxiety) to avoid the whole issue, I'd be afraid that homeschooling will distance her further from her peers especially that it sounds like she managed academically and to a degree socially-unless her teachers were so out to lunch that they didn't see anything.
Maybe you need a smaller, friendlier school. There are kids with no diagnosis who have social anxiety so you could present her as that.
Good Luck

ectomorph

Thu, Aug 22 2019, 10:47 am

I don't understand how it can possibly benefit your daughter to keep the diagnosis from the teachers. They have no doubt noticed her social struggles.

If you're worried about stigma, home schooling is just as much a stigma as asd.

amother

Peach

Thu, Aug 22 2019, 10:53 am

If your child is very high functioning, there is no need to give her the official label of ASD. What for? These labels are not scientific, or black and white. I know children who received different diagnoses from different specialists. When a child is high functioning, it is often very unclear what they have, if anything at all.

There is a very grey line between high functioning ASD, and just plain social anxiety or some rigid thinking. Not everything needs to be labelled in life. We have become a label-crazy society, and in my painful experience labels can often do more harm than good, especially when we are discussing someone who is very high functioning.

If she indeed is so high functioning that she managed to get by a whole school year without major, major issues, then I am certain there are many specialists out there who wouldn't run to claim ASD necessarily. Again, it's not black and white. In the states there is currently a trend to label everyone.

And the ASD label is just a label for several issues. You can tell her teachers she suffers from social anxiety or whatever without calling it ASD.

As for the school, you will have to ask them about their refund policies. Only you know how much time you could invest in her at home, how many social opportunities she will have, and how miserable she was at school. If she wasn't truly miserable, I would give it a chance. If she was, I would homeschool.

amother

Peach

Thu, Aug 22 2019, 10:55 am

ectomorph wrote:

Lots of kids have social struggles. It's not the same as being labelled on the spectrum.
Why do they need the diagnosis? What good will it be to have those 3 letters?? Isn't it enough to deal with the social struggles and whatever else she needs?

amother

Copper

Thu, Aug 22 2019, 10:56 am

Social anxiety can result from a lack of social skills, but it shouldn't be conflated with lacking social skills.

chestnut

Thu, Aug 22 2019, 11:10 am

ectomorph wrote:

If they have noticed her social struggles, why haven't they mentioned anything?

ectomorph

Thu, Aug 22 2019, 11:25 am

chestnut wrote:

If they have noticed her social struggles, why haven't they mentioned anything?

They might need to be educated about ASD. Or she might seem normal enough that they don't pick up on her struggles, especially if she has one good friend.

ectomorph

Thu, Aug 22 2019, 11:28 am

amother [ Peach ] wrote:

Telling my teachers I have adhd helped. Until then I was viewed as a problem and deliberately disruptive. When teachers understood, they tried to make the class more adhd friendly (frequent breaks, not bothering me if I wasn't paying attention as long as I was quiet).

They might even know of ASD but perhaps they think she is chutzpadik when she misunderstood them, rather than socially unaware.

ectomorph

Thu, Aug 22 2019, 11:30 am

Also, it's quite easy to think a child is just an introvert and not realize that they are socially awkward or anxious.

Tirza

Thu, Aug 22 2019, 11:42 am

I'm a special education teacher.
You may not be limited to only two choices- mainstream or homeschool. Most communities have special education schools or programs or inclusion programs for children with ASD or social-emotional difficulties. New York and New Jersey have many such programs, as do many communities in Israel. You didn't specify where you live, but it's likely that yours do too.

amother

Peach

Thu, Aug 22 2019, 11:43 am

ectomorph wrote:

ADHD is a different ballgame altogether. First of all, it has far less stigma. In fact, in certain circles it's even cool to have ADHD. Everybody does.

Second, ASD is something that is far more often misdiagnosed, and it's also something where the label doesn't add much for the treatment. Or in any case, it often causes more harm than its worth.
Better to just narrow down on the issues, like social anxiety and lack of social awareness, rather than come to the teachers with a label and textbook list of symptoms. It won't help and the kid WILL be stigmatised.

All this is true of course only in cases where the child is very high functioning.

ectomorph

Thu, Aug 22 2019, 11:46 am

Yeah, back when I was diagnosed, adhd was unheard of. It was a huge stigma back then.

It never helps to hide such information ime. Asd is a huge spectrum just like ADHD. But having the name can make teachers more understanding in both cases.

Any way, if you're looking to avoid stigma, home schooling is not the way.

amother

Peach

Thu, Aug 22 2019, 11:53 am

ectomorph wrote:

It never helps to hide such information ime. Asd is a huge spectrum just like ADHD. But having the name can make teachers more understanding in both cases.

.

And IME, sharing that information can be hugely detrimental. Once the teachers know, the school knows. The students know. The kid himself knows. Kids and students think very black and white (especially those on the spectrum....). So the kid and all his peers consider him autistic, which does nothing for his self esteem. Or his social acceptance.

All this, and he might not have ASD at all. I cannot tell you how many kids I have seen that were diagnosed as ASD in childhood, and a few years later it was decided they did not have ASD at all (sometimes they received no other 'label', sometimes the specialists decided they actually just suffered from anxiety , or had a personality disorder, etc).

Unfortunately I've learned these labels are not always so scientific. There is no blood test for ASD. In two years, they might change the DSM and it will be categorized differently. Meanwhile I see no point in announcing to the world that the kid has ASD when we often can't be sure a high functioning kid actually has ASD, and when those 3 letters will close doors for him, rather than open them.

ectomorph

Thu, Aug 22 2019, 11:55 am

I hate when people delete important and relevant parts of my posts.