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liz2008
Emu Egg
Joined: Jun 05, 2008
Posts: 3
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 Posted: Wed Jun 11, 2008 11:30 pm Post subject: |
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| schleppenheimer wrote: | | I think that the advocate idea is a great one, but if you're in a district that doesn't want to spend money on children with AS, the fight will be long, hard, and costly. |
Unfortunately, there's a lot of truth in this statement. Even with an advocate, you may win some battles but be prepared to lose some, too. They're advocates; not miracle workers.  We've been fighting for services for the last six years and while our advocate has been able to help us get some services, we still haven't been able to get all of the services my son needs. I still think it was worth hiring an advocate, though. Moving wasn't an option for us and we can't afford any of the area's private schools. I did give some thought to homeschooling my son but I know neither of us would have survived that!
Good luck, Consmom. Let us know what happens. |
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consmom
Tufted Titmouse
Joined: May 28, 2008
Posts: 29
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| Posted: Wed Jul 30, 2008 12:54 am Post subject: update |
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| After a long fight last year, I did get a advocate. My son is finally going to get his FIE from the school. It's a start, I hope they see the same dx the Dr. did or I'll be back at it again. The head of special ed as already questioned the fact that the Dr. put on his report that my son "most likely has probable mild aspergers"and then he goes to list a lot of symptoms he has . I tried to tell her they don't have a blood test for AS & guess it can't ever be 100%. I'm going to try to go back to the Dr. before school starts and get another report the school will accept it a little better. Atleast, on Aug.25th my son will walk in school ahead of where we were last May. I'm so glad about that. I told our advocate he has a awesome job helping parents help their kids. |
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ster
Phoenix
Joined: Sep 24, 2005
Posts: 2456
Location: new england
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| Posted: Wed Jul 30, 2008 8:03 am Post subject: |
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| unfortunately, schools seem to latch onto the words "most likely", and then figure they have a way to dispute the dx........ |
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DomesticAdvocate
Yellow-bellied Woodpecker
Joined: Feb 26, 2008
Posts: 51
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| Posted: Wed Jul 30, 2008 12:37 pm Post subject: Fellow texan here |
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All I can say is holy cow!
I can relate to the trouble you are having. I'm sorry you have to deal with all the drama, but your son is really fortunate to have you advocating for him, it will make a huge amount of difference for him later.
I have a 12 year old that has "mild aspberger's" and he cannot function with out a lot of help and without medication. I don't know who came up with term mild, because for he and our family, it doesn't feel mild!
I think people get really confused because he "looks normal" and is quiet in social situations. They might think everything is okay but as parents, we know it's REALLY not okay for him.
He said that he gets stuck in a thinking world and we are working with him now more than ever to verbalize things, odd because he used to be hyper verbal.
I feel like I'm rambling and a bit off topic, but I just wanted to encourage you, because it will get better, the initial fight is usually the most nauseating.
I have met another child my son's age and he is much further behind because he has been in few programs. I can really see the difference early intervention makes. |
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consmom
Tufted Titmouse
Joined: May 28, 2008
Posts: 29
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| Posted: Wed Jul 30, 2008 1:21 pm Post subject: |
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| He's going to OT 2x a week and skills trainging about everyother week. I do feel like we got a late start not getting him Dx till he was almost 9, and we wasted all of last school year with them not doing a FIE. The good thing is I have always him some kind of extra help and I've worked hard with him since he was 2. |
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ster
Phoenix
Joined: Sep 24, 2005
Posts: 2456
Location: new england
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| Posted: Thu Jul 31, 2008 10:00 am Post subject: |
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my son didn't get dxed until 13.....i think one of the hardest parts of AS for him is that "he doesn't look disabled".....people have a tendency to think he's a smart-mouthed boy- when really he just doesn't understand what they're saying to him.
i think others have a hard time accepting his dx because "he's a smart boy".........ah well.....he's doing well these days. if only i could get him to tell others that he doesn't understand what they're saying. |
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DW_a_mom
Phoenix
Joined: Feb 23, 2008
Posts: 1363
Location: Northern California
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| Posted: Thu Jul 31, 2008 1:42 pm Post subject: |
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| consmom wrote: | | He's going to OT 2x a week and skills trainging about everyother week. I do feel like we got a late start not getting him Dx till he was almost 9, and we wasted all of last school year with them not doing a FIE. The good thing is I have always him some kind of extra help and I've worked hard with him since he was 2. |
I think the most important thing we do for our AS kids in their early years is pay attention to them, learn how they tick, and what they respond to, and adapt our parenting accordingly. That can and should be done even when you think you have a "normal" child. Since it sounds like you are the type of parent who did this, I don't think you shorted your child in any way.
I am glad to hear you are making progress with the school district. It was disheartening to read your earlier posts, and how little the school seemed willing to recognize your son's needs.
My son is also "mild" Aspergers, but ours is a school diagnosis. It actually started from OT issues, because my son has trouble with his hands. That alone couldn't get him help, but the SST at school went over the list of possible qualifiers for special education under our state rules, selected a few possibilities, and tested for those (at our request, I should note). The results were really interesting. I think the one that struck me the most was the componetized IQ test. Brilliant scores for some components; well belong average on others. Did you ever get to see the components on your son's IQ test? If not, you should ask. Even though my son's "average" score on the IQ test wouldn't have been high enough for GATE (gifted and talented education), we've gotten him GATE qualified now based on the areas he excels.
The thing with our kids, as you recognize, is that their talents will languish unless they can get support for the areas they have trouble with. You can't just hold them back waiting for the weak skills to catch up, because the brilliant parts of their brain desperately need feeding. If the balance is not handled correctly, there is a real risk of them withdrawing and refusing to engage; of giving up.
I hope you get it worked out with your school. If not, don't hestitate to find a better one. Every child can thrive at school, if in the right one.
And I think I should remember to give my thanks to my son's school's amazing resource team more often. Once I brought their attention to my child, they became the most amazing partners. Every child should have dedicated advocates like this. It should be the norm. It's really sad that it isn't.
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Last edited by DW_a_mom on Thu Jul 31, 2008 3:49 pm; edited 1 time in total |
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DomesticAdvocate
Yellow-bellied Woodpecker
Joined: Feb 26, 2008
Posts: 51
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| Posted: Thu Jul 31, 2008 3:40 pm Post subject: |
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He's going to OT 2x a week and skills trainging about everyother week. I do feel like we got a late start not getting him Dx till he was almost 9, and we wasted all of last school year with them not doing a FIE. The good thing is I have always him some kind of extra help and I've worked hard with him since he was 2.
Absolutely I agree,
Your son will do well because he has an available and observant parent. |
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consmom
Tufted Titmouse
Joined: May 28, 2008
Posts: 29
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| Posted: Tue Aug 05, 2008 3:30 pm Post subject: |
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Ahhh thanks guys, he's my heart and my little hero. His interest is pokemon video games and can tell you anyting you want to know about it. I do wish he showed a little interest in school work, then this wouldn't be so hard for him. I have a feeling most of the school day is head is really in his own little pokemon world.
We go back to the Dr. in the morning I'll let you know if we have any updates.
Oh, no I have never looked at his IQ test, but the school should do a new one soon, so I'll look in to it. |
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Bunni
Deinonychus
Joined: Mar 16, 2007
Age: 48
Posts: 321
Location: Pennsylvania, USA
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| Posted: Tue Aug 05, 2008 3:51 pm Post subject: |
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My daughter was on a 504 for much the same reason for the longest time. Now that we are heading into highschool, even though she is gifted, support is needed because she can't meet standards! This was the point I had to make for them to "get" the need.
Here we have a gifted child with Asperger's. She also has ADHD. Depending on the content of her assignments she can either complete them well or not at all. For instance when social content is put into her classwork or homework, or there is an open-enede type of assignment as opposed to one that is more concrete, she can not answer effectively. her answers to such questions would be a one-line concise and literla answer that she can't expound on any further. The standard states that a paragraph answer when asked for, must be 5 sentences long. There are others to note, but to save time, this is just one of them and based on that and graduation requirements I said to them, We have a child who makes straight A's since kindergarden, who won't graduate from high school based on your standards. Ohhhhhh, they said. So now we have an IEP with her gifted needs in it, rather than the Gifted IEP or a 504 with with accomodations.
One of the other big accomodations we need is reduced homework, as she needs downtime at home due to the exhaustion she feels from the social demands of her day. One of her sensitivities is to spoken communication and various types of voices, and a day of listening is also very tiring.
While we work on these things and others, sometimes there is regression for short periods of time as well. It's just how things go.
Emily is college bound too and needs to be able to graduate from high school! So we now have a dual diagnosis.
Also, schools are not equipped in any way to make a diagnosis of Autism or Asperger's, just like they should not diagnose an ear infection or the flu.
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Bunni
That which doesn't kill me, makes me stronger, and really pisses me off. |
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consmom
Tufted Titmouse
Joined: May 28, 2008
Posts: 29
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| Posted: Tue Aug 05, 2008 11:26 pm Post subject: |
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| Good luck to Emily, I wish our kids didn't have to worry about these state '"test". In Tx. they have to pass them to go on to the next grade, I think if they pass their classes that should be good enough. It's to much for these kids. |
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Bunni
Deinonychus
Joined: Mar 16, 2007
Age: 48
Posts: 321
Location: Pennsylvania, USA
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| Posted: Wed Aug 06, 2008 3:07 am Post subject: |
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It sure is!
School has become test prep! Of course on all those standardized tests she score in the 99th percentile and makes them look good. Wish in return they didn't make it so hard, meet her half way without a big fight.
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Bunni
That which doesn't kill me, makes me stronger, and really pisses me off. |
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