So fed up 😡 | Imamother

amother

Cornsilk

Sun, Sep 29 2024, 7:20 pm

amother OP wrote:

Her neurologist recommended a shadow for during school, but I’m not sure it’s the right thing for her at the moment. I don’t know if she feels different than the other kids and if she already does then I don’t want to add to it.

I was asked why I don’t put her into a smaller school setting, my answer is how do I know that’s a better idea for her. If she’s still in pull-ups at school, the kids start catching up at some point. With a smaller setting, isn’t there more of a chance for kids to notice more.

I would send her to a small special Ed preschool if there’s need for it, which I keep doubting. But anyway without the ASD diagnosis they’re not taking her.

hi, mom of 2 kids with hfasd dx here- I highly reccomend a special ed, for sure since ur child is still in preschool. I've done both. push in aba and then a special ed school- floortime. there was no comparison in the growth when the classroom was tailor made to meet my child's needs and felt more normalized because wasn't being singled out as the kid with the aba,leaving for ot ect. which bothered my kid. goal is to to give child as much as possible as young as possible, so that they have a better chance of integrating

amother

↑ Sienna ↓

Sun, Sep 29 2024, 8:00 pm

amother OP wrote:

I’m asking please for those mentioning Pandas again and again. Please stop. I can’t think about that yet and you do realize how irresponsible is it to tell someone to just give Motrin round the clock for a few days, and to give antibiotics. It sounds insane.
I don’t need another headache now to add to our growing list of issues. Maybe one day I’ll be ready to look into pandas but now I just can’t.

If it was straightforward and all it took was “simple” bloodwork I might hear it. But according to what I’m hearing you can’t even rely on that.

And I’m sorry but a Dr who treats such different vast array of issues seems a bit weird to me. It’s highly suspicious to me to see a Dr who says they treat things from seizures to chronic fatigue to Lyme to pandas. Make it make sense.

The reason is makes sense is that even though as far as symptoms go they are vastly different, they all share similar root causes. And she treats the root causes. But you said you didn't want to discuss this ....

TwinsMommy

Sun, Sep 29 2024, 8:41 pm

I'm still confused as to whether she received a multi factored evaluation and an educational diagnosis (leading to an IEP) via the school district. Did you ask for it in writing? If school isn't seeing what you're seeing, they can't just say no thank you to the eval if you ask for it in writing..... and when you don't get the educational diagnosis, you then can get an IEE on their dime which leads to services in school. Hopefully! (is she really never mouthing anything at school??) The medical diagnosis is another ball of wax.

My twins (almost 18 now) both have autism and adhd, and one twin definitely regressed into autism at the age of 3 and was an angel before that. At age 4, she wasn't mouthing much anymore but she wasn't masking her autism, that's for sure. I babysit a kiddo like yours and without meeting her, my immediate thought is a type of autism. My daughter did integrated preschool--- half special ed kiddos, half neurotypical. Didn't matter that half the class was toilet trained at age 3, 4, 5...... she and others weren't, and the classroom paras were allowed to change them. No, your daughter might not need a fully special ed preschool--- but an integrated program like ours was.

For a more definitive look at PANDAS you can try for a Cunningham Panel but I totally understand why you're hesitant to go that route at this time. It IS easier to go on months of motrin and ABX and watch for changes--- but chasing PANDAS at the same time as chasing autism is like nailing jello to the wall.

amother

↑ Vermilion ↓

Sun, Sep 29 2024, 8:56 pm

amother Sienna wrote:

I won't mention it again if you don't want to but yeah this is kind of like saying: I don't understand how one diet that removes gluten, dairy and nightshades can work for multiple conditions like arthritis, thyroiditis, and psoriasis let's say.

The answer is that they're all autoimmune diseases and all those foods cause inflammation.

That's a simplified example but just pointing out that your reasoning is faulty.

amother

↑ OP ↓

Mon, Sep 30 2024, 12:21 am

amother Foxglove wrote:

OP, keep up the great work fighting for your daughter!
Are you in NYC? If so, I believe the Dr. Prescription is only needed for PT and OT. Can you get the other evaluation in the meantime? ( speech, ed)
Also, if your child had a well visit in the past 12 months there's no need for a new one now. The dr can simply fax over on a prescription pad a request for ot and pt evaluations
I work for CSE and this is how it's done.

Thank you so much ♥️. I’m in touch with pediatrician to discuss this, it’s just that everything is taking so long and I’ve been dealing with all this for months. I’m at the point where I need things to fall into place already! Especially with a new addition coming soon iyh.

amother

↑ OP ↓

Mon, Sep 30 2024, 12:28 am

TwinsMommy wrote:

We might end up doing half a day at special Ed preschool and half a day mainstreamed (if that’s the only way we get approval) but we need the approval! At her first meeting in the winter she didn’t get approved for any services at all, she was just put at risk for social factors. Now that we got a medical diagnosis I decided to try applying again.

Your warmth really comes through from your post; ♥️ can you babysit for my kiddo?

I also love your analogy of nailing jello to the wall. Sounds like something sensory my daughter would love 😝.

amother

Hyssop ↓

Mon, Sep 30 2024, 1:13 am

amother OP wrote:

We finally have a new meeting scheduled with CPSE but now I’m being told that we need updated well-visits which our Dr only has available for 5 days prior to our meeting which won’t give us any time for the evaluations. Emailing Dr but they don’t seem to understand how hard this is.

My almost-4 year old acts like a 2 year old, takes everything in her mouth so we can’t have small toys for my other kids so they’re missing out.

She talks like a baby and it physically makes me nauseous, can’t understand what she says even though her language used to be above average. She does it purposely seems like. She has accidents daily, currently wears a pull-up to school.

Every time we want to buy the kids something new, we have to think a million times because every single thing gets put into her mouth and just isn’t safe. She got her a cute pen so now she’s covered in pen marks. Recently ruined an outfit with highlighters made for kids her age. I’m so frustrated!!

When I talk to her I feel like I’m talking to a wall. She usually doesn’t respond to her name, and ignores everything we tell her. She asks the same question five times in a row, and then will suddenly just switch topics like she hasn’t just asked something five times.

When we refuse her anything she will tantrum like crazy, will hit me, etc. she doesn’t get most social cues and just doesn’t seem to act age-appropriate.

And now we might not make it to our CPSE meeting. Which btw is beyond stupid since they’ll only consider her for PT, OT and Speech services if she’s very delayed which I don’t think she is. She had EI up to age 3 which she made tremendous progress with but there’s something there that were missing. She has issues but not necessarily the standard issues they want to help with.

Her neurologist says she doesn’t have ASD but is in the “neighborhood.” Does he realize that this doesn’t help us at all? What does it even mean? What am I supposed to do with that information?

Who can help me here? Developmental pediatrician? Neuro psychologist? Pediatrician said regular psychologist but I don’t want it to be a waste of time.

Dd has a diagnosis of epilepsy and developmental delay, and I can’t get a shred of help for her so far and it’s so so hard.

I posted about this a few times in the past but now I need concrete advice, please guide me further!!

Having epilepsy raises the likelihood that she does have ASD. From what you've written she absolutely sounds on the spectrum.

YES she is very delayed. Is she your oldest? NONE of what you have written here sounds normal, all of these things she should be doing for a long time already. Take every single delay she has and exaggerate it so that it's clear that she needs help.

YES developmental pediatrician. Regular psychologist should be okay but not instead of the developmental pedi. Neurologists are not the best at diagnosing ASD.

Also please don't assume she is doing any of this on purpose, I know that's what it looks like but it's not. She's ASD, none of this is on purpose, she simply isn't understanding. She's missing so much info you don't even realize.

amother

↑ Hyssop ↓

Mon, Sep 30 2024, 1:36 am

amother OP wrote:

I hear what you’re saying, but my heart doesn’t want to accept it. I’m so afraid of the ASD diagnosis for some reason, I was more relieved to get the epilepsy and developmental delays answer. I’m so afraid of tacking on ASD.

So far we’re doing OT twice a week through insurance with a terrific therapist but she needs way more.

Where did you get the therapies mentioned? Not asking for a specific name, but through an agency/private pay? How did you find those therapists?

I don’t know where to start.

I was also so afraid of the diagnosis but it's not so bad. I think it wasn't so bad because we had been dealing with misdiagnoses and not-helpful medications for years, behavior struggles and trauma for the whole family for years, so when I finally had an answer that was comprehensive I was just relieved and grateful. It doesn't change the child to have a diagnosis, it's still the same child you always had, all you have now is a name for the issues and a pathway to getting help for your child and your entire family. I promise you that is all that changes. ASD is a good diagnosis to have, it gets you a lot of help that you really very sorely need. The worst is when people who don't have kids with ASD abuse the label to get themselves money or to get their child a bigger basket of help than they need or to get their child services in school by claiming ASD when it isn't. That really hurts those of us parenting kids with bona fide ASD. But these parents do it because ASD is such a great diagnosis and gets so much help! And once you have a name for your child's difficulties you can find an ST who specializes in it, an OT who specializes in it, parenting classes geared to parents of kids with ASD, maybe even couples counseling for parents of ASD kids. There's so much out there!

I promise you it's not so scary, it really isn't, and delaying the inevitable or refusing to diagnose at all will only cause heartbreak and wear and tear on your entire family, it is such a bracha to have the right diagnosis!

You don't want to know how late in the game I learned this lesson, just don't be me. Your child is in preschool and she can go so far with the right help. Now is the time to get her what she needs so she can start closing gaps ASAP.

Good luck op!!!

amother

↑ Purple ↓

Mon, Sep 30 2024, 1:49 am

amother Hyssop wrote:

Totally. My son only got the dx of ASD in 1st grade. It wasn't because I was in denial or anything. I would blame corona-era the most.

Since getting the dx and related therapies, he is doing so much better bli ayin hora. He has a shadow but she sits in an office and takes him out once a day and is there if she is needed.

amother

↑ Purple

Mon, Sep 30 2024, 1:57 am

amother OP wrote:

If she has a good shadow, the shadow won't make it obvious what she is doing. I have a friend who never told her kid he has a shadow. He thought the shadow was an assistant morah (she would help the morah). The shadow knew she didn't want her kid to know.

Smaller classes are much better usually. Less noise and overstimulation. More attention from the Morah.

amother

Mistyrose ↓

Mon, Sep 30 2024, 5:04 am

amother OP wrote:

You can at least do the bloodwork.