Special but not special enough...

amother

OP ↓

Wed, Jul 24 2024, 7:44 pm

I am a mom of a kid with special needs. Where I live (not NY or NJ), if you don't send to public school you get zero services unless you fit very tight criteria. Including an ASD diagnosis or other specific diagnosed (epilepsy, CP). You have to go through a whole assessment process and then they have a meeting without you and eventually decide if they deem it severe enough for services.

Well, my kid has ASD. Just "not enough". They have a real diagnosis from two different psychologists.
My life is chaotic with my kid. My kid is ages behind peers. Socially outcast. Can't do basic life skills. But happens to be verbal. (Wasn't verbal until later and years of speech therapy. Too bad on me for getting my kid help). My kid has trouble functioning where other NT kids can function.

With these services I can get my kid real help.
But my kid is smart and verbal. So we get zip. Zilch. Nadda.

I guess this is a vent. No one gets my situation. "Be grateful it isn't more severe". Except then we would get help. No frum program for special needs would help us because my kid is too high functioning for them. I am alone. NT classmates shun my kid, parents aren't kind either to "my odd kid".
And no group for special ed moms would have me because "not special enough".

Anyone else been in this situation?

amother

Hibiscus

Wed, Jul 24 2024, 7:51 pm

I remember the day my son was diagnosed with HFA. I remember thinking "now that I'm officially a social needs mom, where are the support groups swooping down to make our lives easier?".

There was no swooping. We were able to get some services through insurance but I commiserate with you. It's not easy being a little special.

miami85 ↓

Wed, Jul 24 2024, 8:34 pm

How old is he?

I'm a school psychologist and outside NY the philosophy becomes about "Access to education" rather than "therapy". The school should still provide "504" or accommodations for the medical diagnosis of ASD, I think parents are still involved in the 504 process.

My school district also provides very little services to kids in private schools, but it's not like they give "therapy", the services are still much less.

My son has Apraxia and it's been a struggle to get him adequate speech services

amother

↑ OP ↓

Wed, Jul 24 2024, 8:42 pm

miami85 wrote:

It's not about therapy but about helping them be functional.
School district focuses on educational needs.
This agency is supposed to help with services to be functional and independent one day.

School district won't help because my kid is in private school. 504 or iep won't help. Yeshiva won't have to follow it anyways. Or they just kick my kid out for being "too special".

amother

↑ OP ↓

Wed, Jul 24 2024, 8:45 pm

amother Oak wrote:

Would you consider moving to NY for services or special Ed school?

Personally I hate NY. Lived there for a short period of time. Couldn't find our footing and community. Plus super expensive. We are OOTners...
I would look into it for my kid but I kept calling and asking around. Couldn't find anything for our needs. Because not special ed in the sense of learning disabilities. But HFASD, social issues, difficulties with adjustments to routines, life skills, daily functioning...

↑ miami85 ↓

Thu, Jul 25 2024, 8:30 am

amother OP wrote:

Age does have an impact in terms of functionality. And 504s and IEPs are both legal documents and schools are required to follow them.

I know it's not the answer you are looking for, but it's not the schools responsibility for your child to be "functional" but to have access to general education. The law is "free and appropriate public education", thus in areas like OT--they only need to provide fine motor for writitng and sensory to the point of helping a kid sit and focus in class. They don't provide "feeding therapy" for eating issues or fine motor for zippers and buttons, those would be done at an outpatient clinic. In my school district kids who need ABA/BCBA (for behaviors) have to go ABA centers--and they are considered "Homeschooled"

↑ miami85

Thu, Jul 25 2024, 2:31 pm

amother Blushpink wrote:

Ok- I’m shooting from the hip here.
Have you tried enrolling him in karate
I heard the skills of discipline learned there trickle down to other skills.
If he has a good teacher he will teach him that it’s better to “build then destroy”
That was the motto that this teacher had.

That is actually a very good idea. I know a family that did that for their son with ASD, I signed my son with Apraxia up for a year, I would love to go back but the program conveniently located to me only offers 1 year or 3 year options and 3 year was too much.

amother

Honey ↓

Thu, Jul 25 2024, 2:46 pm

amother Lightcoral wrote:

Or making aliya.

That really really depends.

Depends on what she needs. On whether her child can learn Hebrew. On whether the family will go from barely-floating to sinking in a different language, culture, work environment, whether the parents will find jobs or sink into depression. Raising HFASD SN kids is HARD. It's HARD. Doing it as olim bodedim is REALLY HARD.

Now I am not saying don't do it.
But Bituach Leumi is inaccessible until you've been here twelve months, there are vaadot before you can get services in school or special ed of any kind, being limited to English-only providers is very very limiting, and so on. (BH BH BH our kids are tzabarim and speak Hebrew, don't know how we'd manage if they didn't.)

It's like you telling me to come to NY for services for my HFASD kid. That's not simple. Doesn't matter how amazing services are, they take time to access, there are waiting lists, there's bureaucracy (and in Israel - in a new language) to work through. And while you struggle to get your placements and the help you need you are at very very serious risk of drowning because you are in a new place still getting used to everything, no community, no help, new jobs, new doctors, etc. and you STILL don't have the services you need so your kid is STILL struggling AND now adjusting to everything new (which is incredibly hard for anyone on the spectrum no matter what the adjustment happens to be).

cbsp

Thu, Jul 25 2024, 2:47 pm

miami85 wrote:

Age does have an impact in terms of functionality. And 504s and IEPs are both legal documents and schools are required to follow them.

I wish.

I'm in NJ. Despite a qualifying diagnosis by multiple BOE evaluators who all recommended relevant services, the BOE director refused to classify our child. There's nothing compelling a classification, and without a classification there are no services.

Additionally, even if the child is classified, not every district will provide a 504 to a private school kid. Furthermore, even with a classification, the private school student gets an I S P as opposed to an I E P to which there are no actual legal consequences for not following. For a parent to get the BOE to comply it takes hiring legal council which is $$$ for the parent but the BOE has an in house legal team so it's not a problem for them (effectively we pay both sides - our attorney fees and the taxes to pay their attorneys to block services for our child)

FeetOnTheGround

Thu, Jul 25 2024, 4:01 pm

amother OP wrote:

Please pm me. I’d like to offer some help or at least comfort

amother

Firebrick

Thu, Jul 25 2024, 4:06 pm

miami85 wrote:

I think access to education is a way better approach than therapy.

amother

↑ Lightcoral ↓

Thu, Jul 25 2024, 5:45 pm

amother Honey wrote:

For sure. I was just putting it out there.

Let's say they were considering it for other reasons. (Seems to be more and more families considering aliya after 10.7). This could be a huge help for their son with HFASD. Could be. Maybe yes. Maybe no.

I have heard of a Charedi school exclusively for HFASD. I think that is amazing and it's my backup plan. My son is currently in a regular class with support since he had already started there before he was dxed.