My 8 yr. old daughter has finally received a diagnosis (Autism Spectrum)...where do I start? Any advice appreciated.

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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StormiesMommy
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Joined: Tue Mar 14, 2017 6:32 pm

My 8 yr. old daughter has finally received a diagnosis (Autism Spectrum)...where do I start? Any advice appreciated.

Postby StormiesMommy » Tue Mar 14, 2017 6:59 pm

Hello friends. I have an 8 year old daughter named Stormie. We noticed at a young age she wasn't speaking, didn't react to pain as a baby normally would and a few other warning signs we didn't pick up on (for instance, from day one she would make a humming noise whenever she breastfed or had a bottle). She would also make a funny face my husband referred to jokingly as her "Bruce Lee kill face" I don't know what that means, lol it was just his term of endearment for her silly face.

At 3, we got her into preschool (special education) for her speech. She was very delayed and also had issues with correct pronunciation. At the same time, we began to notice some small tics. In retrospect, that funny scrunched up face she would make was a tic, as well as the humming. The ticks progressed over time and now they are quite frequent and involve both her arms/hands/loud humming and at times loss of eye muscle control in the left eye (it crosses). The school had dubbed her a mystery. Last year the psychologist found her IQ to be low normal, with no explanation for her failure to progress. She is far behind in all subjects. Only reading a few words. Still on single digits in math. She progresses a bit, and then slides backwards again.

Getting to the point now (sorry this is so long)..she had been evaluated numerous times by the school for autism, but never quite met the criteria. She is social and friendly, she can talk to people and make eye contact. Both myself and her teacher who she has been with since kinder have always felt she was on the spectrum. She had an MRI and EEG few years back, came out normal. Original diagnosis by Neurologist was tics, learning disability (of unknown source?), speech delay. Saw a new Nuero Doc last week and without ever mentioning our thoughts on Autism just going over the history and symptoms I was given this diagnosis: Autism Spectrum! Along with Speech Delay, Intellectual Disability, Sensory Processing Disorder, Tourette's. THe school says just put it on file, we will see if the psychologist wants to change her diagnosis. She just had an IEP. She gets minimal support at school, apparently there aren't funds to go around. They just started using ipads for speech therapy since they can't afford to have the therapist on site. She gets 20 min a week with that. 20 min every other week for occupational therapy (she has issues with cutting, writing, can't tie her shoelaces). She's in a classroom of children K-3.

So aside from the long vent (sorry again), I guess my real question is what other resources are out there for my daughter? I have no clue where to start. I was told by the teacher my daughter will never get the services she needs through the school, and that she really should have speech every day it's that important for her. Her tics and her speech really inhibit her learning. She does have times where she spaces out (is that the Autism?). I have been told to seek out help at Inland Regional Center, SS disability, CCS...are those options, and are there other resources?? What about the fact that my daughter is social, is that contrary to Autism? Any insight or experiences you can share would be very helpful, thank in advance. I'm in CA (San Bernardino County) if that makes a difference.

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: My 8 yr. old daughter has finally received a diagnosis (Autism Spectrum)...where do I start? Any advice appreciated.

Postby Winnie » Wed Mar 15, 2017 3:38 pm

Hi StormiesMommy -- welcome to the forum.

StormiesMommy wrote: So aside from the long vent (sorry again), I guess my real question is what other resources are out there for my daughter? I have no clue where to start. I was told by the teacher my daughter will never get the services she needs through the school, and that she really should have speech every day it's that important for her. Her tics and her speech really inhibit her learning.

The level of service your daughter is receiving is completely unacceptable -- and since they are basing her services on the availability (or lack thereof) of therapists, or cost of therapists, the district is also in violation of federal law. Necessary services cannot (legally) be based on administrative convenience.

Likely her communication challenges go beyond a "speech delay" (generic term that often minimizes the extent of the speech and language deficits). Ask for her receptive (and expressive) language testing and scores as well. Significant language deficits will also affect her progress with reading.

The school has allowed your daughter to languish without appropriate services for years (regardless of diagnosis) and fall further and further behind. The first thing you need to do is get on the advocacy learning curve -- the only way to obtain anything approaching appropriate from the school will be to understand your daughter's rights under the law and force their hand.

A good parent-friendly resource to begin this process is to read the book "From Emotions to Advocacy," available many places including the Wrightslaw site:
http://www.wrightslaw.com/bks/feta2/feta2.htm

There are many other articles and a blog worth reading on the Wrightslaw site^ as well.

The school psychologist has nothing to do with a medical diagnosis of autism, only "eligibility" for services under one of the IDEA disability categories. Which category did she qualify under to receive an IEP?

StormiesMommy wrote: I have been told to seek out help at Inland Regional Center, SS disability, CCS...are those options, and are there other resources??

It's actually fortunate that you live in CA -- you absolutely should contact your regional center for whatever your daughter may be eligible for. A service coordinator there can probably help with suggestions for other resources. And that goes for any other suggested resource too.

Leave no rock unturned -- the level of help your daughter receives, regardless of the venue, is dependent on your ability to effectively advocate for her. It shouldn't be so difficult for parents to help their children, but it isn't always easy to circle all the wagons and conquer the necessary learning curves!
Winnie
"Make it a powerful memory, the happiest you can remember."


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