My bubble just burst

iVillage Member
Registered: 08-26-2005
My bubble just burst
8
Tue, 01-10-2006 - 9:05pm

I was feeling so positive about Jake's progress lately until today when I got the PT's eval for the I.U meeting for Jake this week. I was shocked to learn he's a year behind in gross motor skills.I have yet to get the other reports from ST and OT but I already know he's way behind in both.I feel like we always take 2 steps forward and 1 step back. I noticed he started hand flapping again, something I hadn't seen for months, don't know what that's about but on the other hand he just learned how to jump and his pretend play has really taken off. Everytime I start to think we have the upper hand on this disorder I'm given a glaring reminder just how far we still have to go. ARRGH!

I'm not sure what happens when he transitions to the I.U but I am not looking forward to working with a whole different group of therapists who don't know the first thing about Jake. Thankfully, his play therapist asked me if she could keep him as a long term case as part of her training for her Greenspan certification in floortime. It's a ten year thing and she has already done 6 so we'll be seeing her for a couple more years. Of all the therapists I feel she is the one that understands him the best and she has a great relationship with him.She feels I shouldn't put him in the I.U pre-school because he is too high functioning. She actually thinks I should put him in a regular pre-school and not say anything about his diagnosis to the teacher.She said if issues arise I could always say it then. She was a special ed teacher herself so I'm not sure why she would tell me that. Of course I don't know who to listen to. What have been your experiences with the I.U? Did you put your child in their pre-school or a regular pre-school.
Teresa

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Registered: 06-09-2005
Tue, 01-10-2006 - 10:35pm

Teresa,

If I'm remembering correctly, Jake is about 3? Is he transitioning to the I.U. preschool group? I have a few thoughts based on my experience, here's our story..

Ryan wasn't dx until he was around 3.5 - 4, so our first experience with therapists was with the I.U, we weren't transitioning from another group. Ryan started going to a regular private preschool/daycare first, without a dx. Therapists from our I.U. do screenings at alot of the preschools, and when they screened him they recommended we get a full evaluation, and that got the ball rolling. We were noticing alot of things around this time as well, and were on waiting lists for a psych and 2 dev peds. When the I.U. did the eval, they recommended OT, PT, ST and developmental, which was really like social skills. We didn't really have to think about the preschool, because the I.U. evaluators did not think their I.U. preschool was a good fit for Ryan. There is only one in our county, and it seems targeted for more lower functioning kids. The I.U. felt Ryan should be around more NT peers, for modeling good social skills. By the time we actually got in the see those Dev peds, they said the same thing, maybe that is where your play therapist is coming from. I think it all depends on what the I.U. preschool is like. Did the I.U. actually recommend their preschool, or is that still pending? Will they let you go for a visit?

Ryan was in a private (Lutheran) preschool/childcare from 3.5 years till kindy, 3 days a week full time. It was a wonderfull place with great staff. The center allowed the I.U. therapist to come to the school and do the therapy there. In fact the "developmental" stuff they did right in the classes with other kids. There were other kids that got therapy there, mostly ST. Ryan was probably that preschool's first Aspie ;)

I'm rambling now.. but there a few things I wanted to pass along.

I know how upsetting the whole eval thing can be.. Ryan's first eval shocked me too, he was way behind in gross motor, fine motor, speech, developmental. I was so floored, and I felt stupid that somehow I should have known. But you know what? We were very pleased with the I.U. therapists, particulaly the OT and PT. Once the therapy started, we really noticed the improvement. Ryan is never going to be a star athlete, but the PT really helped him get caught up. The OT was even more successful. Ryan was a kid who never wanted to color and he fought us when asked to write his letters or his name. He had alot of sensory issues. Now, he's in kindy and he does all writing along with class. He is not the neatest writer, and he can't tie his shoes yet, but his OT gave him the confidence to know he can do it, so he tries. He has the perfect pencil grasp, lol! His sensory issues are under control (for now).

Just do you don't think I'm on the IU payroll, we were not as pleased with the ST. She often made excuses and didn't show up. We should have done a better job of making sure we always got our 30 minutes a week.

I would see what the I.U. recommends for Jake, you can always argue your case once you know what they're offering.

Remember, 2 steps forward, 1 step back.. you're still moving forward!

Take Care,

Kate

iVillage Member
Registered: 02-20-2001
Tue, 01-10-2006 - 10:50pm
Bobby is also high-functioning, but the regular preschool jsut didnt work for him.

 


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Registered: 03-26-2003
Wed, 01-11-2006 - 12:10am

Theresa,

Sending huge hugs. It does rot to see the test results on paper. He is 3 right? Cait tested about a year behind in all areas (except pre-academics since she was hyperlexic) at 3 years old. She really made loads of progress through preschool and was pretty much age appropriate in all areas leaving kindergarten. There were some gaps but I have known kids who did even better than Cait in that time too. Plus you have already said that Jake is already making progress so that is good.

This life is a bunch of ups and downs sometimes. Things are going so great and then it is like we get the wind knocked out of us again. But just keep on.

As for the special preschool vs. regular. Not sure I agree with your play therapist there. My kids would have drowned in regular preschool. In fact I put Mike in a regular preschool for a while and they 1) didn't know what to do with him and so didn't require him to do anything. So he spent the day on the trikes outside, or stimming, or terrorizing other kids and 2) they denied that there were any problems and one teacher actually sabotaged an eval I was having done by highlighting stengths Mike didn't have because she was afraid I was going to medicate him. Her idea of being helpful was to tell my MIL that I needed to spend more time with Mike.

I actually have put all 4 of my children (special needs or not) through the local special ed preschool. They have a integrated preschool program and those without IEP's went through as "typical peers" but had the same structure, special education teachers and some perks (like adaptive swimming) that the SN kids had.

I actually switched Dave from a regular preschool to the SN one too. Even for kids who are not significantly delayed but are different from the norm, I found it very helpful. It has made the world of difference for David.

Renee

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Registered: 03-26-2003
Wed, 01-11-2006 - 12:16am

Guess I should have read the other responses first. Seems my experience with preschools is alot different. It was the same in MA (where Cait went) and CA (where the other 3 went) so I forget other states may be different.

If those are more severe special needs classes then you may want to go visit and check out all the options before making a decision. I thought most areas had integrated preschools for our kinds of kids so that they would have access to typical peers and a more typical preschool type setting.

Sorry.

Renee

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iVillage Member
Registered: 02-20-2001
Wed, 01-11-2006 - 8:16am

In PA we are different with the IU, but what they do in my county is the autism class room is in the same place as the headstart school and they do things together so that the kids do get to be around "NT" kids.

 


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iVillage Member
Registered: 01-19-2005
Wed, 01-11-2006 - 11:13am

Sending you more hugs! I know what you mean about the evals. Eric was a year behind on everything too. Now he has caught up on speech, although pragmatics are a big problem. But he is very behind on fine motor and adaptive behaviors, still a year behind there.

We also tend to see increased stims every time there is a new skill developed. Even though now I know that is the cycle, it's still hard to see them flap or toe walk or whatever when you thought they had stopped. I remember when I saw my 5 yo neice sucking her thumb with her blankie right before starting school for the first time. Her mom was upset too. But I had a "eureka" and felt like Eric's reverting to old stims is kind of the same thing, a comfort behavior like thumb-sucking was to his typical cousin. Still, it is hard to see.

My son is 3.5 and my experience is a lot like Renee's. Eric is fairly HF with pretty good speech, so we did have him in a regular private pre-school. Although he has never been a behavioral problem, he does tend to "check out" and because he knew his abc's 123's the teachers weren't worried. If he wanted to sit in a corner and spin things, that was ok with them, since he wasn't bothering anyone.

The teachers were loving, and he would play with other kids sometimes if the other children initiated something. But left on his own, during "center time" he would wander. Outdoors he'd race around alone. During circle time, sometimes he would sit, other times wander. Again, the teachers were relaxed. There were 14 kids and 2 teachers.

Since Eric was not forced to socialize, he didn't. So we did switch to the school system's ESE preschool. They offer an autism only class, and a mixed delay class but we chose the "autistic LEAP" class. This program is 4 ASD kids and 4 typical kids. One teacher, two aides. My problem has been that the typical kids don't always come, often there is just 1 typical child. Many days, just the ASD boys. But the program is structured around pragmatics/social skills and the kids are expected to participate. OT is worked into the program (it is only 3 hrs a day). Eric is doing much better socially, partly due to this class, I think. Even if the role models aren't always there, the program is more structured than the private pre-k and he is learning, instead of just on "spaced out" autopilot, if that makes sense. Plus the teacher understands him better and is trained in all things ASD.

In time, Eric will need more role models. Right now I try to do lots of play dates with neighborhood kids, his cousins etc.

If the regular pre-k has teachers with some ASD or SPED background, it might be ok, it also depends on the program. Probably the more structure the better. The one where our son went was "fun" but not what he needed right now.

Katherine

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Registered: 02-24-2004
Wed, 01-11-2006 - 1:04pm

Teresa,

We put Nathan in a Catholic Montessori preschool. Five days a week/3 1/2 hrs a day. His older brother had gone there and loved it. The class was small with 2 teachers. Very organized and great personable teachers.

This is when we found out that Nathan was autistic. I think the best thing is to really check out the school first and find what would work best for Jake and his needs. We kept Nathan at this school even after he was dx'd. He did receive speech from the school district twice a week (In the afternoons he would attend their special needs preschool).

Nathan was 4yrs old at the time. He didn't have behavioral issues, checked out alot, and needed prompting and extra direction. But overall he was ok to continue attending the regular preschool. One of his teachers had a brother who she believed to be on the spectrum, so she was familiar with Nathan's quirks.

michelle

iVillage Member
Registered: 09-15-2003
Fri, 01-13-2006 - 3:41am

Teresa,

I too have spent much time in the past debating reg. vs. sn preschool. Right now my son is in sn preschool. Next year he will have the option of doing an integrated class (NT and SN) at this school or we could put him in reg. preschool.

If you do decide to do reg. preschool I definitely think you should tell the teacher. I just don't see any advantage to not telling her, and see many potential disadvantages.

Chrissy