Feeling Lost

iVillage Member
Registered: 02-10-2005
Feeling Lost
6
Tue, 09-04-2007 - 12:52am

I'm not quite sure where to begin....

We suspect that DS has Asperger's and a SID. I've posted on here before, but it's very mild. Almost to where one wouldn't notice anything different. Until he starts jumping, flapping his hands and, occasionally, shaking his head. He is TERRIFIED of heights (specifically escalators) and will cry in front of everyone and can't handle balls coming at him. There's more, but you get the picture. Most of the time he's fine. He's very smart and witty. He's actually improved his running gait and is now making friends.

We had an appt. with the Dr. approx 2 months ago, but by chance he had to cancel. He did, however, have the Autism coordinator call and she gave us the number of the local agency where DS could get assessed. I called that agency and left 2 messages, 2 months ago. No one called us back.

DH is a professor and spoke with the educational psychologist who did the initial assessment and found that DS has a "High Probability" (scored 85%) of being Asperger's. To use her for further assessing would cost an additional $550! So, she said for us to go to the school district.

I call the school district, who tells me to call the school, who tells me to call the district. I make a connection with a nice lady there who says to go back to the school, but to call her if I need help.

I finally hook up with the speech therapist. I guess this is who usually handles such assessments? How much could she know? Not much at all. She keeps talking about any factors that would interfere with his education. She wants to have a "Student Success Team" meeting where we first plan an intervention. He doesn't need intervening until we know what his problem is. I want him assessed! She said "by law" they had to do the success team meeting first. Not true, according to the School district lady.

Ds has advanced/proficient in all of his grades, so the S.Ther. doesn't get why I'm calling. She said if it doesn't interfere with his learning then there was nothing they could do. So, he can jump, flap and cry at balls, but that won't affect his working relationship with his peers in the classroom??? I know this isn't politically correct, but what an idiot! He's actually pretty quiet in the classroom, but once in a while acts silly. He may need more time to do his work (takes hours sometimes at home!) and he does tend to watch everyone while they work. But, really, it's not the classroom at this point that worries us. We're concerned about the playground, pe and field trips.

Anyway, After talking with the Sp.Ther. (who is going to make a few calls), I called the district lady back. She tells me to go ahead and call the school psych, explain my concerns and work with him. I feel awful going around the Sp.Ther., but I want to move this along.

There. I doubt anyone has read this far, but it feels good to write.

Our other main concern is that we don't want DS to feel bad. We want him to get help in a way that maybe he doesn't even notice. He's VERY sensitive and I think he's heard a bit of what DH and I have been discussing. He thinks he has a phobia (as far as heights go). So smart! He even mentioned the special day class kids last week. Gosh, I hope he doesn't think we think he belongs there! He said he plays with a boy from that class and he can't figure out why his friend is there. He says he must be a helper.

We just don't want DS to think we think anything is wrong with him. It's just that mild, but enough to where he could have problems.

I could write forever.
Thanks

iVillage Member
Registered: 02-10-2005
Tue, 09-04-2007 - 12:57am

There is actually one more thing....

He has been placed in a 3rd-4th grade combination class (two teachers team-teaching). Last year, before I seriously thought about Asperger's, we thought maybe being with older kids would help. But he is just 7yrs old (starting Kindergarten at 4yrs. I know, bad move). Whenever he has attempted a team sport, he's always been moved down to the younger group. He's immature for his age.

So, he had a great first week, but all kids do. His has a large class (36 kids!), but they say all the classes are large.

Should we move him or could this work?
Thanks so much.

iVillage Member
Registered: 08-27-2007
Tue, 09-04-2007 - 3:01am
I am also new to this board, but I feel your pain and could relate to what you are saying. Except my son is actually having issues in his class. I did want to say there is a "Special Education Plans" board on here and they people there seem really nice. I made a post there actually. I feel your pain on the whole diagnosis thing too. My son got diagnosed by his pedi who has some specialty in behavioral issues, but its seems like I am going to have to get that heavy duty eval done. I got a quote of 1200 dollars at a child study center here. I don't care about spending the money, but am not sure how to get it. We are also going through the whole team study meeting, just because we have too. I feel like it is such a waste of time since my feeling is they really can't do anything accomodating for him unless he has the IEP in place. I am like can we just move to the IEP ? I guess if you have a gut feeling he needs some extra help then keep pushing. I can totally relate to trying not to say much in front of him too. Most of the time I feel like my son is not really listening, but he did pick up on something I said and will repeat if verbatum at random times. I am trying to be so careful now. Sorry I really didn't help much, but I just wanted to let you know there are a lot of moms out there who are feeling the same way as you.

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iVillage Member
Registered: 01-25-2007
Tue, 09-04-2007 - 5:12am
A lot depends on the state you live in. My son's grades were excellent but he had behavior problems and they still repeatedly refused to assess him. They even tried to discourage us from getting an independent eval. We finally did and only then were we able to force them to accomadate him. They did request a team meeting before the evaluation. We insisted that the meeting take place AFTER the eval. The Neuropsych suggested also having him evaluated by an Occupational Therapist. This was a great experience. She put together a nice plan for my son. The kids usually love it because it's mostly playing and it sounds like it might address some of the issues your son has. (The school' s O.T. decided after a few minutes of observation that he didn't need school O.T. but that's another story.) Of course all of this is a whole lot easier if your insurance company covers it. We are fortunate that our plan covers both counseling and private O.T. The sad truth is that the services offered through the school are often lacking. Good Luck
iVillage Member
Registered: 06-25-2003
Tue, 09-04-2007 - 10:30am

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-07-2003
Tue, 09-04-2007 - 11:04am

My AS kids are also "mild" which makes it harder for others to see. My 8yo ds diagnosis says he's "twice exceptional" since he has struggles that require extra accommodation, but he's also so smart that he needs to be kept challenged. He's too smart for special ed, but he has struggles which make regular class settings difficult, too.

My kids just finally got testing and dx this year after waiting for nearly 1.5 yrs for official testing. While waiting for testing, I expressed my suspicions to my ds teacher at school. After making her aware of the problem, she was more attentive to his difficulties and provided informal accommodations (2nd grade). I also told ds 3rd grade teacher about our suspicions and efforts to get dx. She was able to see ds problems and supported our efforts in getting him help, but she could not provide him many accommodations since the kids were now earning letter grades on their work. Without an official dx, she couldn't just grade the portion of work ds completed like his previous teacher had done. It was clear that ds knew how to do the school work, but some days he just couldn't put in on paper very well. As a result, even though ds was still doing well in school, he wasn't doing AS WELL since accommodations weren't being provided. Each year was becoming more difficult for ds.

With my ds, his biggest problems in class are brain organization, inferential thinking, and easily getting distracted. It only requires minor accommodations, but it makes a HUGE difference in his overall performance. So far we haven't had to implement homework accommodations since we haven't had much homework this year (school just started), but it IS written into his 504 that he can have modified homework if necessary.

Even though ds only needs minor classroom accommodations, with an official dx, we can also include social accommodations into ds 504. The school is supposed to be starting social groups and other things like that to help ds with some of his social skills and learning how to deal with stress in the school setting. He's also supposed to start getting speech therapy to help him organize his thoughts in his head before speaking (he'll start and stop and re-start and stop his sentences over and over when trying to speak). There's no way the school would provide this without an official dx.

I didn't figure out earlier that I could insist that the school perform testing for my kids, but fortunately dh got a new job last year with fantastic health benefits which covered the testing. If I had it to do over, I'd put my requests to the school in writing and send it by certified mail. I'd also include in the letter a request that they let you know by "x" date when they will be scheduling the testing. You might also see if there's an autism or Asperger's support group in the area who could refer you to an advocate for working the system. Also, the county school board should have a special education representative you could call to find out why you're getting the run-around at your school.

I hope you can find someone cooperative to help you soon!

iVillage Member
Registered: 03-26-2003
Tue, 09-04-2007 - 1:55pm

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