Too high functioning?!?

amother

Sat, Feb 10 2024, 10:18 pm

I feel it is a bracha and also such an issue. I have a DC with autism and ADHD. On meds, high functioning and mainstreamed... teachers know DC has ADHD, autism diagnosis is fairly recent but they already know DC has social issues so giving them the diagnosis only negatively impacts my kid. I saw how they reacted to the ADHD...

DC is also very smart... we did a whole educational psych eval so it isn't just our assumptions. Especially when considering the diagnoses the IQ tests and academic skills are quite high. (Ie is still distractable from ADHD and scored above average to superior in many areas).

But I get no outside help. Chessed organizations say my kid is too high functioning. My kid wouldn't fit in with their population because where I live they gear towards those who can't be mainstream.
Government programs say DC doesn't qualify but I am trying anyways.

I feel so alone. No one understands. I get no help from outside my family. I need to pay out of pocket for all help like OT ( health insurance has no local providers and I am not driving an hour away for subpar help).

My kid looks typical but when has their meltdowns I am just lost and overwhelmed. Because people see it as bad parenting or I just dont care. But I am doing all I can and still not handling things!!

Not in NY or NJ and can't move there so please don't tell me about all the opportunities and help available. It makes me cry even more.

amother

Whitewash

Sat, Feb 10 2024, 10:22 pm

My kid sounds almost identical. I live in Lakewood and there’s no help here either. If that makes you feel a bit better …

Financially it made more sense for us to sign up for a private health plan for just that kid. But we are paying for it and for all copays out of pocket.

Kids like ours seem to fall through the cracks. I understand why but it’s so hard!

amother

Amber

Sat, Feb 10 2024, 10:23 pm

I have no great advice, but just want you to know that I understand you and it’s a really challenging predicament. On one hand, I’m so thankful that my child does not immediately appear “special needs” but on the other hand, I feel extremely judged, misunderstood, and lack basic support! Even my family doesn’t get it. Everyone complains about my dc, but when I try to explain how difficult it is, they all say “he’s a regular child!” He has an ASD diagnosis, so I get lots of therapy through an ABA Agency, but I don’t feel comfortable asking for extra help from chessed organizations because he’s not viewed as a “special needs child.” I’m so thankful for his less severe diagnosis but it’s really isolating.

amother

Sat, Feb 10 2024, 10:32 pm

Exactly!! So isolating!
And we have private health insurance. Not everyone is on medicaid or can even get it. But even with that there are limited providers. We have a good plan for another DC's medical needs and for this child's psychiatrist. It is so expensive.
Schools don't get when I say we have medical bills. Major financial impact.

And isolating. Emotional impact. Some of my family knows but others don't. And even those who do know don't get it fully. Or only see my kid on vacation (so less stress) or just give in to tantrums despite me asking multiple times to set limits.

TwinsMommy

Sat, Feb 10 2024, 11:06 pm

Both of my teens with ADHD and autism are gifted with high IQs. The one that is SUPER gifted with a SUPER high IQ is also the "lowest functioning" and can't be in a regular school, not even a public school because of his behaviors. You see AUTISM the minute you meet him, despite the brilliance.

My daughter has ADHD and autism and some medical junk BUT walks alone to friends on Shabbos, is mainstreamed, but yes, DOES qualify for medicaid waiver.

There are 3 ways to get medicaid as a child...

1) be in a low income family
2) be not AS low income but have a qualifying disability
3) be ANY income but have a qualifying disability

#3 is medicaid waiver and it's not just for the lower functioning. My daughter is fairly HIGH functioning. She works a JOB over the summer, and is mainstreamed during the school year. She doesn't feel ready to learn to drive but I think she will drive at some point (she's 17 now).

We're in Ohio where you have to prove a NEED to get medicaid waiver. But you can be ANY income. If you happen to be in Cleveland, PM me and I can tell you about more local resources for which you qualify even if your kiddo is high functioning.

groisamomma

Sat, Feb 10 2024, 11:13 pm

TwinsMommy wrote:

Off topic, but I can’t believe your twins are 17 already! Time flies. I’m always amazed at your posts and how well you navigate the system and advocate for them.

Much luck, OP. Hug

amother

Amber

Sat, Feb 10 2024, 11:15 pm

amother OP wrote:

I have private insurance. I had a plan that did not cover Aba. I had to switch out entire families coverage but I now have horizon blue cross blue sheild and I get services with it!

amother

Sun, Feb 11 2024, 12:56 am

TwinsMommy wrote:

Thanks. Not in Cleveland.
Live in California where we have a regional center system where they have to approve you. You must have a qualifying condition- autism qualifies but ADHD doesnt. Then you must meet high qualifications on disability level to get any help because it's a lifetime program. My kid's academic success automatically makes it harder to get. And all services pretty much require regional center coverage.

I get they don't want people faking an autism diagnosis to get services but it stops eligible children from getting help!

amother

Amaranthus

Sun, Feb 11 2024, 12:59 am

amother OP wrote:

This makes me so angry. If your child was a Spanish speaking noncitizen he would be eligible for free.

amother

Sun, Feb 11 2024, 1:22 am

amother Amaranthus wrote:

This makes me so angry. If your child was a Spanish speaking noncitizen he would be eligible for free.

I know. Super frustrating. Friends work at a doctor's office and all the non citizens and illegal immigrants get free Healthcare and other benefits. And meanwhile I can't afford getting my kid the help they need.

amother

Pearl

Thu, Feb 15 2024, 1:08 pm

amother Whitewash wrote:

I’m also in Lakewood with a kid like this too. He seems perfectly regular on the surface at first glance. Spend some more time with him and he isn’t a typical child! When there’s any downtime, forget it, he’s a ticking time bomb.

amother

Thu, Feb 15 2024, 2:35 pm

I am so overwhelmed.
Are there any frum schools for kids like this? High functioning but need support? Special Ed is too restrictive (and no real programs locally, only have 1 for extreme cases).
My kid is super bright but needs social skills help, frequent reminders, and redirection. Oh and teachers need to tell ME what needs to be done and not expect my kid to remember that for a week from Tuesday they need to bring in... 🙄

amother

Holly

Thu, Feb 15 2024, 2:40 pm

You are not alone. My niece is 2x gifted. She is an older teen already.
She is soooo smart but doesn’t do her work. She so can get 100 on a test, but doesn’t hand in any assignments and fails the class. She has been though 4 local Yeshivas, regular public school with services and 2 therapeutic schools. Now they are looking into sending her to a boarding therapeutic school. She thinks rules don’t apply to her. Her behavior is impulsive, can be reckless, and she has no follow through. My sister is a fabulous mom. I know what doctors she goes to, how much counsel she seeks and gets with her Rav, appointment and therapy for the entire family, ….. but people look at her and her DD as if she is negligent and too permissive.
He DD looks health and beautiful. It’s like judging a book by its cover.

amother

Snowdrop

Thu, Feb 15 2024, 2:52 pm

OP I am so sorry you feel so isolated with this.
My daughter who is mainsteam and very high functioning, smart. She is recently diagnosed. Biggest issue is social. When she has meltdowns or does things when we are out.....I'll stop there.

One this right now which is a HUGE help is her therapist who specializes in ASD. This therapist also gives both myself and my husband parenting help and advice in dealing with an ASD child. It is life changing.
I know its expensive and doesn't help with programs, but maybe it can just help you with getting through your days with a child like this.

Sorry I can't advise anyone in your area as I'm in Israel.
Huge hugs to you- It's not easy

amother

Raspberry

Thu, Feb 15 2024, 2:57 pm

To me it sounds like all your kid needs is a social skills group for like minded kids. He can be in a regular school and you can't think of the "now" only , like "now" he is socially isolated. Think of the future. Keep him in a regular school because he excels academically and find a social skills group for kids who have the same diagnosis. He will slowly build up his social skills without compromising being in a regular school setting.