Our meeting with the district's autism team

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sinagua
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18 Mar 2008, 7:23 pm

I realized I never updated all you good people on how our meeting with the district autism team last Thursday went. Then I tried to post about it, and there was so much to say...I gave up, two or three times. I offer you a string of words to sum up how the meeting went: validation, relief, reassurance, understanding, and yet...some lingering frustration (which I fear will always be par for the course with these things).

I think the best summary of how the evaluators see our son was offered by the speech pathologist, a self-described "dyed-in-the-wool Skinnerian behaviorist," who said,

Quote:
"I hope you don't take this the wrong way [always a great way to start a conversation, haha] but, well, I just get so many kids brought to me every week, because the parents think they have Asperger's, and I generally have to say 'No, no, no, they don't have it,' and it was just so WONDERFUL and EXCITING to meet your son - to meet a child who so obviously meets the diagnostic criteria for Asperger's."


She was practically beside herself with enthusiasm. And the few "classic" AS behaviors that they hadn't observed in him (because they only observed him like twice, for an hour or two each time - and he knew he was being watched), his father and I were easily able to rattle off numerous examples of those behaviors (some of which one of his teachers echoed having witnessed herself). We felt like the evaluators really listened to us, and BELIEVED us. Every behavior we mentioned, the speech therapist/behaviorist kept nodding her head and whispering things like "Bingo!" and "Check"! to the school psychologist beside her.

Inexplicably, though, these evaluators did not know that our son is on medication and has been since first grade. "OH," said the Skinnerian lady, "so what WE saw, that was him ON medication?" Um, YES, we told her, and explained that when he's unmedicated, his behaviors look much more autistic (spinning, throwing himself into walls or onto the floor, repetitive sing-songy screechy speech, and almost total lack of eye contact or real communication). "REALLY?" she said. I don't think she was seriously questioning us, more like taking it all in and adding it to what she'd already observed. And fortunately there were at least two people at that table who'd witnessed our son unmedicated just a few months ago, when he decided one morning to throw his pills in the trash "to see what would happen." What happened was, the school called me to come get him. But it worked out well in the end, because now I had witnesses to what he's like unmedicated. Both his classroom teacher and his special teacher stared wide-eyed at the speech lady and nodded vigorously, agreeing with everything my husband and I said about the Little Bird's unmedicated behaviors.

So it was very gratifying, very validating, to be told what we already knew for years by people we don't even know, but who are professionals and who have seen thousands of children over the course of their careers and can really tell when something's "off" with a given child. They said we are great parents, and we must really have an interesting, challenging time of it, because while they all found the boy to be a sweet and delightful child, they also saw that he could be extremely, er, "challenging" and raising him "properly" would no doubt require a great deal of work, flexibility, dedication, consistency, creativity, and humor and compassion on our part (and his teachers'). (Yes, indeedy - welcome to our world! Why do you think we never had any MORE children?)

Now for the frustrating bit. While it seems universally acknowledged that the boy resoundingly meets the criteria for Asperger's Syndrome and ADHD, and he's also "extremely bright," he STILL does not qualify for accommodation via the Students with Disabilities Act, and thus is not eligible for an IEP (Individualized Education Plan, or something like that). We currently have a 504 in place. The main difference between a 504 and an IEP is that with an IEP, the school is obligated to use funds to provide him with speech/behavioral therapy, an aide if necessary, and a whole bunch of other things, if necessary. With the 504, things are much more flexible and loosey-goosey. The school isn't required to dole out any funds. I won't bore you all with further details. But what it essentially means is that, after all these evaluations, testings, and meetings, we find ourselves just where we started, except with more documentation.

At least we no longer feel like we're in the same position of constantly feeling like we have to PROVE to all our son's educators that he does indeed have neurological issues that result in behaviors that otherwise might look like just "bad" behaviors.

When I told the group that there was a very high chance (I didn't want to tell them "definitely") that we're moving to New England at the end of the school year, they were actually very enthusiastic about this, because honestly they know that education in Arizona is abysmal, and our son stands a much better chance of getting a better education and more accommodations in New England (or, really, just about anywhere other than Arizona).

So. That's about it. We're not crazy, and our son is not "bad". And now we have papers that say so.



DW_a_mom
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18 Mar 2008, 7:31 pm

These meetings are always intense, but also interesting, aren't they?

WOW, that it isn't enough to get services. WOW. Boneheaded by whoever set the standards.


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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


sinagua
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18 Mar 2008, 7:34 pm

DW_a_mom wrote:
These meetings are always intense, but also interesting, aren't they?

WOW, that it isn't enough to get services. WOW. Boneheaded by whoever set the standards.


Oh god, we always get SO anxious before these meetings. I'm slowly learning to calm down, but we've had SO MANY bad experiences...it's hard to "trust the process," y'know?

And yeah - STILL don't qualify for services a la IEP. :roll: Sheesh.



Smelena
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18 Mar 2008, 7:59 pm

Glad you got your son's diagnosis. Bummer about not meeting the criteria to get an IEP.


Helen



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19 Mar 2008, 5:08 am

Move to New England. Fast.

We lived in California right after our son was diagnosed, and they too were abysmal. Maybe it's just the West in general. We moved back to Pittsburgh, PA, and are so happy that we did, because all the stuff we were fighting for on a monthly basis in California, we received automatically in Pittsburgh. It was SO nice to not have to fight anymore.

Kris



ster
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19 Mar 2008, 4:38 pm

:scratch: not eligible for an IEP????? what did they say to support this?...........



sinagua
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19 Mar 2008, 4:44 pm

ster wrote:
:scratch: not eligible for an IEP????? what did they say to support this?...........


They say Asperger's and ADHD are not eligible under the Students with Disabilities Act, and thus are not eligible for an IEP. They also say his conditions don't adversely affect his academic performance, just mostly social. ("just" social - great) And even his teachers said "Um no it does sometimes affect his academic performance when he has to be removed from the room and can't finish his work..."

This is NOT over. I think the speech pathologist is really in our corner and will do what she can to help us. I can't say the same for her boss, who was very pretty and very presentable and also struck me as someone with a degree in PR (aka BS). ;)

And I am very hopeful that he'll qualify for an IEP in New England.



ster
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20 Mar 2008, 5:49 am

Got the following information off the ED.gov website.....hope it helps


Who is eligible for special education?
Certain children with disabilities are eligible for special education and related services. The IDEA provides a definition of a "child with a disability." This law lists 13 different disability categories under which a child may be found eligible for special education and related services. These categories are:

Autism
Deafness
Deaf-blindness
Hearing impairment
Mental retardation
Multiple disabilities
Orthopedic impairment
Other health impairment
Serious emotional disturbance
Specific learning disability
Speech or language impairment
Traumatic brain injury
Visual impairment, including blindness.





How is a decision made about my child's eligibility for special education?
As was said earlier, the decision about your child's eligibility for services is based on whether your son or daughter has a disability that fits into one of the IDEA's 13 disability categories (see the list presented in Part I) and whether that disability affects how your child does in school. This decision will be made when the evaluation has been completed, and the results are in.

In the past, parents were not involved under IDEA in making the decision about their child's eligibility for special education and related services. Now, under the changes to IDEA (passed in 1997), parents are included in the group that decides a child's eligibility for special education services. This group will look at all of the information gathered during the evaluation and decide if your child meets the definition of a "child with a disability." (This definition will come from the IDEA and from the policies your state or district uses.) If so, your child will be eligible for special education and related services.

Under the IDEA, a child may not be found eligible for services if the determining reason for thinking the child is eligible is that:

the child has limited English proficiency, or
the child has a lack of instruction in math or reading.
If your child is found eligible, you and the school will work together to design an educational program for your child. This process is described in detail in Part III of this Briefing Paper.

As parents, you have the right to receive a copy of the evaluation report on your child and the paperwork about your child's eligibility for special education and related services.

What happens if my child is not eligible for services?

If the group decides that your child is not eligible for special education services, the school system must tell you this in writing and explain why your child has been found "not eligible." Under the IDEA, you must also be given information about what you can do if you disagree with this decision.

Read the information the school system gives you. Make sure it includes information about how to challenge the school system's decision. If that information is not in the materials the school gives you, ask the school for it.

Also get in touch with your state's Parent Training and Information (PTI) center. The PTI can tell you what steps to take next. Your PTI is listed on NICHCY's State Resource Sheet for your state.