School for Duncan -- long, sorry

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Registered: 09-12-2004
School for Duncan -- long, sorry
6
Sun, 04-23-2006 - 12:32pm

I'm not sure what to do. Duncan is extremely bright. I hesitate to say gifted, but he's way beyond the average kids his age I know. He's going to be 5 the end of June. He's already reading a lot. Not books so much but it's scary how many street signs he can read, lables on boxes at the store, packages, etc. If there are packages out that don't have pictures he can often figure out what is in them. When I read to him and ask him to pick out a word, he can. He can already do very simple addition "I have three cookies and you give me two more -- now how many cookies do I have" or on fingers. He understands the concept of infinity. WAY beyond where Ian was before kindergarden.

But he still sits down to pee -- big problem for kindergarden. He can't grip a crayon or pencil correctly and they start writing letters and numbers in kindergarden. He does not like to be wrong and he's very proud -- if he feels ashamed he locks up, so something as simple as proper pencil grip may be a big obstacle. We will be working on this all summer. He is so sensitive to noises and crowds and he has terrible skin rashes when he eats candy, high fructose sugar, and dyes (but I can't figure out if it's yellow dye or what). He's anxious and nervous. Mind you, most of these symptoms seemed mild before Christmas, now they are glaring.

When we went to kindergarden round up he would not participate, pulled on my shirt and kept saying, "I want to go HOME. I don't like it here." He does like the school library and so we went there and read some books.

After that I decided to take him back to my other son's psychiatrist because she had been warning me that Duncan has PDD. I didn't really think he did, but it nagged at me and I've been working hard on his sensitivities without realizing I was. I started thinking about all the activities we have avoided. So anyway, the doc gave me a definite PDD-NOS dx along with anxiety and ASD. She made the comment, "Too bad we didn't catch this last year, he could have gone to developmental preschool through the school system." I asked if she thought we could still get in and said she didn't think so because he's kindergarden age for fall 2006.

She sent me to the AARC, which is pretty much the only game in town for ASD. We went and Duncan would not go in the room, he did not like the OT and when she picked him up to take him to the observation window he kicked and hit her, trying to get away. To be fair this is a very dingy place. It's clear that the AARC is the redheaded stepchild of this university hospital. It's grim. We were able to get him to participate a few weeks later (with my husband going in the room -- parents really aren't supposed to be in there with him, but hubby didn't know that and I think because he was a dad, not a mom, they were intimidated to tell him he couldn't go in, LOL!). He had to have his sleeping bag with him the whole time.

I decided to meet with the principal of our school to get his input. He said he thought the all day kindergarden would be better than 1/2 day because it's more relaxed and they don't rush as much to get through the curriculum. Plus it had the advantage of having the same hours as his big brother's, so there wouldn't be running back and forth to school three times a day. He thought it would make the transition easier and I'm inclined to agree. He also sent me to "Count Your Child In" which is a screening for disabilities through our school system.

So we went. Duncan had a full-on hissy right there. Finally the paras were able to do a limited amount of testing. They said he was extremely bright. His behavior was what was going to be his disability, and it really didn't matter WHY he had the behavior. Okay, then.

So then a few days later we go to visit my husband at work, which is an activity we have NEVER had a problem with. We have to wait in the lobby for my husband to come and get us because it is a secured facility. While we are waiting, there is another man in the lobby who tried to converse with Duncan. Duncan would not answer him and we got up and walked around. Duncan kept saying he wanted to go up the stairs (behind the glass security doors) and I kept telling him we would as soon as Dad came to get us. He told me he couldn't wait any longer, and at that moment hubby was there with us and I said, "You just did wait! Very good!" Which instead of encouraging Duncan completely pissed him off. He went to a corner and hid his head. He would not respond to us so I told my husband, "Looks like we can't stay. I'm sorry." But Duncan would not budge from the corner so I carried him. He started screaming bloody murder, kicking and hitting me. I got him in the car and he kept unbuckling the belt. After 5 long minutes of this very loud struggle I got right in his face and said, "Stop this right now!" and spanked his leg. He stopped fighting the belt but continued screaming. I closed the door and drove off, realizing I had had an audience with all the employees who were coming out to go to lunch. Oh, GREAT! I hope they didn't make the connection between my husband and this screaming child.

So then two days later we go back to the AARC for the playgroup. On the way into the building from the sidewalk I could hear a child screaming like they were being tortured. Seriously, it sounded like a cliche from a psych ward movie. I thought to myself, GOD, please don't let that be from our playgroup (we were running a little late because the parking lot was full and we had to park elsewhere). Sure enough it was our group. The playgroup is based on age rather than how profoundly autistic the kids are. The kid who was screaming is not verbal and is apparently classic autistic. Not to be cruel or harsh, but Duncan is not in that category. We did not even attempt to go in and I told the admins there that I am planning to send Duncan to kindergarden this fall and I don't want him to associate this kind of chaos with what school will be like (the AARC had sent us a story about going to school, with the playgroup being Duncan's new "school." This was to help him acclimate to the playgroup at the AARC). I had had to pay $220 for this "therapy." I am not pleased. Duncan is not being helped, and I don't know about you, but I don't have $220 to throw away.

The one good thing about is that Duncan got to see what his behavior -- his hissy fits -- were like to other people. I told him that kindergarden was most definitely not going to have children who screamed like that. "BUT, Duncan, if you have hissy fits at school, the teachers are going to think you belong in a classroom where kids do scream like that, so you'd better decide what kind of classroom you want to be in. The calm classroom? Or the classroom where kids are allowed to scream loudly enough to hear it through brick walls." I don't know how effective that discussion was, but I could tell he was thinking about it. He looks up to the right and it's almost like a computer, "Processing, Proccessing." We'll see if that makes any difference.

Duncan was in preschool last fall. I took him out in November when I saw his teacher shove him and he fell down. Duncan was not cooperating and would not get in line to leave. The only reason I even saw it was I was standing outside waiting for him to come out. He was terribly upset and it took me 10 minutes to get him calmed down. The teacher tried to tell me he tripped over the door jam. Yeah, right. I saw it with my own eyes. I immediately pulled him from the school, thinking since he was scheduled for kindergarden and was already well ahead of the academic level of his preschool classmates, he'd be fine and he and I would have this special time by ourselves that I had had with Ian but never with Ducan. It appears that I have done Duncan a disservice because he's terrified of school now. His autistic tendencies have increased and he also jumps up and down and flaps his hands, something I rarely noticed him doing before Christmas.

I don't know what to do. He's too bright to hold back -- if I hold him back I'm afraid he will be so ahead of his peers and the class work that he will be bored and act up, but he can't grip a crayon properly, stand up to pee in a toilet (bad, bad aim) and he's so anxious. He's not "disabled" so he can't attend the developmental preschool. We are being ignored because the school thinks this is a behavioral problem.

I would be so grateful for any guidance you all might have for me. I know we have the whole summer to prepare, but I'm not sure how to go about it, where to find the proper therapy, etc.

Kelly

Avatar for cathby
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Registered: 05-16-2003
Sun, 04-23-2006 - 2:05pm

Hi Kelly,

I also have a DS who will be 5 at the end of June. PDD-NOS.

After meeting with the dev ped last week, we're keeping him in the school's Pre-K for another year. He's not ready for K. The SD isn't fighting us on this -- they woulda' done what we wanted, even though he has his own para and educating him is very expensive for them (and for us).

The poor grasp sounds familiar. I just learned that it's basically a given that these ASD kids have low tone in their hands and that's why they hate writing.

If you really can't get him in the SD's pre-K -- and I think it's worth asking -- is there any kind of a "5s" program around for next year?

I don't know what state you're in, but I'd go talk to the pre-K *NOW*. They probably have at least a few weeks of school left and as a disabled pre-schooler they are responsible for his education. At least get your foot in the door.

Just my random ramblings.

Good luck to you both,
Cathy

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Registered: 03-26-2003
Sun, 04-23-2006 - 11:21pm

I agree to call the preschool program now. With any luck perhaps they can get him in the preschool prior to the end of the school year and in for extended school year over the summer. Summer is much more low key and they can prepare him for going to school next year.

In the mean time it can be a diagnostic type placement for the next few months to help make a plan for what his needs will be in kindergarten for next year. Hopefully he could still go to K with the proper supports and a little help this summer preparing him.

Lots you mentioned reminded me of Mike at that age. He started in a developmental preschool at 4. The first day he screamed and clawed at the door jam going into the classroom while I was holding him. He continued to cry for 45 minutes and I was allowed to just sit and hold him until he was ready. I also was allowed to attend with him until he was able to have me separate and then we prepared him for that. I attended school with him for 2 weeks I think, then I slowly reduced until I was there 1 time a week to volunteer. He also had one aide he was attached too and as long as she was there life was ok.

For K we planned in advance. I called the teacher and took him to the class prior to the school year to meet her and see the school. "He" (and I) took a bunch of pictures of the school, classroom, teacher, principal, etc. I then made a social story book with all his pictures about his new school. We also made a story about the first day. Most parents stayed for the first 1/2 hour of the first day. I was allowed to stay for the entire thing or until Mike was ready for me to leave.

K was still a struggle. I wish he had more supports as the year went on. The teacher was fabulous and did her level best but she had another classic ADHD boy in there with lots of behavior issues. Mike was a great kid with good behavior so long as the moon was aligned and there were no surprises but it was very difficult for her. Hindsight 20/20 I would have planned for his K year better but we anticipated his "meds" being the thing that would work.

Renee

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Registered: 02-20-2001
Sun, 04-23-2006 - 11:23pm
You knwo I have been talking to people alot about this issue of whether to wait on starting kids in kindergarden.

 


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Registered: 09-12-2004
Mon, 04-24-2006 - 12:25am

Well, there's the rub. I was trying to get him into the developmental preschool, that's what the Count Your Kid In was for. They basically tested his eyesight, which he would not cooperate with, his hearing, which we got through, a few diagnostics for knowing colors, stacking blocks, knowing which line was longer, and what kind of animals were which. They told me it was all way beneath him and he knew it. They said it was the behavior that was going to be a problem, and that developmental preschool wasn't really for him because it was for handicapped kids, and they don't view him as handicapped, but as having a behavioral issue.

The think is, this is fairly new behavior. On rare occasions he has thrown fits, as most kids will, but after having one once every few months, it's now once or twice a day, starting about 4-5 weeks ago and steadily increasing. He hasn't had his vaccinations for 4-6 year olds yet, so it isn't a reaction to those. My dear older son (sarcastic here) told him about "kindergarden shots" which I think is freaking him out. I tried to explain that he will have them regardless of whether or not he attends kindergarden. It may be wise to go ahead with those now, and then if he does not end up attending kindergarden, there will be no association between those and school.

I don't know whether he is just bounding ahead with cognitive leaps or what is going on with this kid. It's freaking me out. But it's like the more we try to help, get him evaluated, go for appointments, etc., the more frustrated he is getting. He wants control, big time.

The other thing is that this sort of had hints of beginning not only when I took him out of the preschool he was attending, but about the same time I started working. I work evenings because that way I can be with him during the day and my husband can be with the kids at night. No daycare issues. But he does not like me not being home in the evening. My husband tries, but he is just not as good at keeping order as I am. So I don't really know how much of this is ASD and how much of it is him just being a kid, trying to get his way.

I really need him to go to kindergarden. I hate leaving the kids and my husband 5 nights a week. If we can get him prepared I can work a couple of days and a couple of evenings so I'm home with them more. I can't afford to quit my job. With gas prices going sky high and that affecting the price of everything else, we really need my income (yeah, the economy is just great -- who do the politicians think they are fooling???).

Anyway, a lot can happen in 3 months. I really do not want to pay for preschool, have my day completely trashed by having to drive Ian to elementary school, drive Duncan to preschool, go pick up Duncan when the measly 2 hours is over, then soon after go get Ian. I can't get anything accomplished when my day is so broken up, and I will still then be working evenings, the kids will not be getting to bed on time, let alone bathed and teeth brushed. I just can't be everywhere, and the needs of the family have to be considered as well as each individual in it. I feel really trapped. I'm damned no matter what I do.

Anyway, I think I'm just angry and frustrated right now, and maybe I'm not being very objective. Duncan is signed up for all day kindergarden, but I don't have to send him if he's not ready by the end of July. Somewhere I will be able to get him into a pre-K program and I may insist on being in the classroom until he is ready to separate.

One thing is for sure, I don't think the school district is going to be much help as far as getting him an aid or whatever. But I may be wrong and feeling pessimistic because I'm tired and weary at the moment. ;-) Ah, well, tomorrow is another day.

Kelly

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Registered: 01-20-2006
Mon, 04-24-2006 - 9:58am

Hello!

As a mother of a 5 year old with HFA, I thought I might chime in too... My son sounds a lot like your son, and he will be going to our school district's developmental pre-k again this fall because the teachers don't think he is ready for kindergarten. I also worry that they won't challenge him academically as he is already reading books and doing simple math (but also has weak pencil grip and fine motor skills). The main reason they feel my son should be in pre-k again is due to his lack of socialization with the other kids, and attention during circle time activities. The teachers warned me that kindergarten was very different from pre-k and kids are expected to work independently, and there would be 20 kids and only ONE teacher and NO teachers-aides (and our school district will NOT pay for personal aides). It was a difficult decision, but I see now that they are right and I am very glad he will have one more year before kindergarten. Also, in my school district, once he starts kindergarten, he can't go back to pre-k if it doesn't work out. In a perfect world, my school district would have a kindergarten for developmentally delayed children, but since it is not state-mandated, it does not exist.

Have you considered looking for a summer program in your area? I think it would be a much easier decision for you if your son can adapt to a short summer program. If you have county services your case worker might be able to help supply you with programs that are available. If not, look into Rec Centers and YMCA or even a small daycare. Also, my state (Ohio), has an "Autism Scholarship" that pays for schooling if you choose to pull your son out of the public education system. I am seriously considering using this option for when my son does go to kindergarten. You might want to check to see if your state has something similar.

I know what a tough decision this is for you. It is not an easy one. I wish you the best of luck.

Stefanie

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Registered: 06-25-2003
Mon, 04-24-2006 - 10:38am

Kelly,

Does he have an IEP? I am guessing they didn't find him eligible for one, based on their "screening". You should push to get an IEP for him. Once you have that, your otions may increase. With an IEP it becomes about what *he needs* rather than what the district provides (theoretically). Therefore, if he needs an inclusion class, and that is offered in a neighburing district, you can push to get him in there.

Check out the IEP and 504 board for some more advice, also.

-Paula

-Paula

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