HELP! In desperate need of some opinions

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iVillage Member
Registered: 06-25-2003
HELP! In desperate need of some opinions
6
Tue, 08-12-2003 - 9:15am
Hello All, I have posted here in the past and lurk often these days.... I have an about to turn 3yr old ds who was diagnosed with HFA at age two. Before I ask my question, you should know that we are very positive this dx "fits" him. He has been evaluated to date by: 1 developmental ped, 1 child psy, 3 DIFFERENT pediatric neurologists, 2 speech therapists, 1 OT, and a special needs educator. Though we often disagree on the semantics of his dx (PDD-NOS, HFA, etc...) we all agree, and always have agreed that he is definitely on the spectrum....mild...but definitely there. OK, so now the "issue" at hand. DS will turn 3 soon and will make the transition from Early Intervention to School Based Services (i.e. special ed preschool. We were in the process of getting our ducks in line for this big "transition" and as part of the process the school wanted him re-evaluated, using standardized tests, to have a current baseline for his needs. Without getting into the specific tests used I will tell you that the scoring ranges went like this 115-85 normal/average range, 84-70 at risk range and below 70 is a qualifying score for services. DS was tested in five main areas (cog, gross motor, fine motor, social/personal and communication). He scored at risk in all areas (with scores averaging around 79) except communication which was in the NORMAL range! We were shocked when we got the results (expected lower) and were told that the scores didn't present the "whole" picture ( DS has horrible social skills and social lang skills, sensory issues, oc issues etc.... They also said ds had other problem areas that are difficult to test or are not reflected in stand. tests and that the tests basically only showed us DS can test well. Then we were told that because he didn't have a score below 70 he didn't qualify for services and wouldn't receive anything. Again, there was a lot of jaw dropping on our part. I asked if the dx still fit given the scores and they said yes. Then DH spoke up and said how can a child with a dx of autism not receive services??? To make a long story short we are awaiting a "final" decision and are prepared to fight for services if necessary. So my question is this.....Do all children on the spectrum test way below average in one or more of the categories I mentioned? Do I have the only AS child who tests well (though still in the at risk range)??? I would be very interested in hearing about others stand testing experiences (especially in the areas I mentioned above).

I am so sorry if this makes no sense and I would really appreciate hearing what others have seen...testing wise.

Thanks,

Liisa

iVillage Member
Registered: 07-11-2003
Thu, 08-14-2003 - 5:26am
Nope, you're not the only one. My 3yo dd also tests well. We were told that she didn't quallify for services too but that she is deffiately on the spectrum. It seems very confusing, IMHO, that a child would be dx'd with autism and not be given services in the areas needed. I was advised that I could appeal and fight for the services (SP and OT) but since we aleady have private programs in place for her we just said forget it. We fought tooth and nail to get the ins co to cover things as they are and since they are willing to coninue we didn't see the point in going to battle again to get someone else to do a lesser job.

But in your case I would say fight for it. Go ahead and appeal to the district for a review. Make a point of documenting all of the things your ds needs help with and get others to do the same. If you have too overwhelm them with proof, and don't take no for an answer.

Peace,

Candes (who is willing to 'praise the Lord the lord and pass the ammo' if need be. *wink*)

iVillage Member
Registered: 03-26-2003
Fri, 08-15-2003 - 10:44am
My 2 children are both high functioning aspergers. My dd is nearly 13 and ds is 14. Neither qualified for services as toddlers and ds qualified at 7. dd has been a watch and consult for the last year. Both IQ out in the 140 to 170 range but are dx definitely Aspergers. In retrospect, I should have fought harder for services when they were small but my dh and I are also high functioning AS and couldnt face the challenge. I think some of the problems we face now, social function things, could have been avoided with training at a younger age. So my opinion is to fight for services, if you have it at all in you.
iVillage Member
Registered: 06-25-2003
Fri, 08-15-2003 - 8:43pm
Oh yes, Fight as much as you can and get as much help as you can. If there is an advocacy group in your area, get involved with it. If there is a Special Education PTA, get involved if you can, Find other parents in your area who have taken these people on and find out how they won (or if they did. -just as useful!). A lot of the time it is just hard slog to make your case and overwhelm them with documentation (in the hope they will give the services to keep you quiet!). However if the SD has some particular foible or soft spot another perent will most likely have found it.

Good luck.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 07-11-2003
Sat, 08-16-2003 - 6:47am
Liisa, your profile says you are currently in England. Are you still there? Is your ds going to a public school there? I don't know how many local British websites you have but I thought I'd share the few I have just in case they can help you. Here they are:

http://www.dfes.gov.uk/sen/ This is from the dept of educations and skills. (Dfes-SEN)

http://www.tonyattwood.com/ This one is Tony Attwood's personal site. On the Resources page he has lots of llinks for support groups in england that might be able to advise you, or at least offer support.

http://www.acs-england.co.uk/# American Community Schools, England. Don't know how helpful this one will be, but I thought I'd throw it in anyway.

http://www.nas.org.uk/index.html This is for the National Autistic Society (UK). They have info on everything from getting a dx to how to fight for services to helping your Aspie prepare for married life (not that your thinking about that at the monent, lol). And they should be able to point you in any direction you need to go.

I hope these help. Keep us informed on how things are going. If you want more urls let me know.

Peace,

Candes



iVillage Member
Registered: 03-25-2003
Sun, 08-17-2003 - 2:21am
You are being sold a bill of goods and jacked over. Our kids typically have "scatter" in their scores. When my son had NO useable language at age 3 he scored very well on communication because he could READ -- he was hyperlexic. What you were told was GROSSLY unfair and you need to fight back, with professional opinions, if need be.

Parents of HFA kids often get told later on that their kids "only" have Aspergers (as if this were not a problem). This is because kids with Aspergers may not always qualify for all the services kids w/autism get. This is also a big lie. If the child EVER had a language delay, many professionals argue that they ALWAYS carry the HFA and not the Aspergers diagnosis, even if the language subsequently improves with time and therapy.

Tigs

iVillage Member
Registered: 03-26-2003
Mon, 08-18-2003 - 3:28am
I am way tired and didn't read the whole thing very well, however, I wanted to add some info before I go to bed.

First let me say that preschool in our state has different eligibility criteria than those of school age children, however, it really shouldn't be to awful different.

Eligibiltiy criteria, per IDEA, comes under one of 13 (?) categories. One of these categories is autism. Now I am not sure I am quoting california per se on all this or IDEA. However, autism is described as a child haveing 2 or more of a set of symptoms not that they have an "autism" diagnosis. So therefore this area also covers children with other "spectrum disorders".

Secondly, there was a report done for the national association of sciences to determine best practices in education for young children with autism. It clearly states in there on numerous occasions that young children with autism spectrum disorders, regardless of the severity, should qualify for educational services under the autism category.

Lastly, I would need to look up the info on eligibility criteria for you or you can. I have some websites around with the info. Our state posts its laws on the web. As parents we are also able to get a free copy of the laws for our state each year. I know it was the same in my last state too. You may want to check if you can get it.

Don't sign the IEP. He should qualify really, it may just take some work.

As for qualifing, yes I have been there. My oldest did qualify at 3 because she was delayed, however, my younger son did not. He also wasn't identified as on the spectrum yet, although the school did say he was SID with significant behavioral difficulties. I am going through it again with my now 3 y.o. My 7 y.o. son was just diagnosed and is now on a 504 plan. My 3 y.o. is apparently not on the spectrum but is SID and most likely ADHD. After Kindergarten, my oldest did test well and was taken off an IEP for a year. She did not do well. We did have to put up a good argument to get her back on an IEP 6 months later and we used the autism category. We knew our material and it wasn't too hard of a fight. It is not uncommon for children on the spectrum to test well, but that doesn't mean they don't need the supports to be successful.

Renee

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