New Poster--hi everybody

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Registered: 04-27-2003
New Poster--hi everybody
4
Sun, 04-27-2003 - 3:46am
Hi everyone, I am new to this board. My son was recently diagnosed with asperger syndrome. He is in first grade and has had a hideous year (refuses to do any work, cries, hides under desk, wanders room, leaves the building, hits teacher, screams This is Boring, throws up lunch when they try to make him eat etc). But, I think we have a great IEP and I'm hopeful that next year will be better. Our school district has an elementary autism specialist and she has been fantastic in putting this all together.

I currently have three questions for you all:

Toileting--this is the first board where I have seen this addressed much. Bill is good w/ the pee but still very weird about pooping. Any helpful suggestions on this?

Disclosure--who do you tell about your kids' diagnosis? Soccer coaches? Neighbors? Your kid? We are just starting to think about his one.

PT/OT services--anyone using these? what kind of stuff do they do with Aspie kids?

I feel really good about the amount of support that seems to be out there & look forward to getting to know you all.

Deb

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Registered: 04-26-2003
Sun, 04-27-2003 - 1:19pm
Hi! My ds is 7yo PDDNOS and in first grade. Regarding disclosure--I'm dealing with that myself because I don't want him to be labeled, yet it's clear he's different from the others. I never told Alex anything--only that he's smart, etc. I feel I will know the right time to tell him his official diagnosis. I just signed him up for camp and I want him to be with the regular kids (because he needs to learn from them) so I will not give them any official diagnosis, but I will explain/describe some of Alex's behaviors or issues they might encounter. I've rarely told people outside the family that he's 'autistic', although he officially is autistic, people have too many preconceived notions about autism and I don't want him treated differently. When I feel it's necessary, I'll say that he's had 'developmental delays'--which is true. This is surely a tough one! I'm still learning myself. Good luck to you.
iVillage Member
Registered: 03-26-2003
Sun, 04-27-2003 - 11:57pm
Hello there,

I have a almost 9 y.o. dd with asperger's (originally PDD at age 4) and a 7 y.o. with aspie traits as well as ADHD and ocd traits. It is nice to meet you and I hope next year goes better than this.

As for Potty training, oh that brings back bad memories and I wish I had better advice than my kids just didn't seem to do it until they were good and ready and then it just finally happened. Prior to that I thought I was beating my head into the wall. On the other hand some of my kids (all but the oldest true aspie) are still having potty difficulties so i am not the best to ask. I know with my NT 5 y.o. she has a lot of problems with it and it all seems related to constipation. She has a tough time with milk and gets constipated easily. As soon as she is slightly constipated she starts to have accidents that seem to last forever. She loses the feeling where she needs it. We are just ending another phase like that again. My 7 y.o. just doesn't realize he needs to go and will wet his pants, but not poop.

As for disclosure. I have found that when i don't tell, something happens and I usually have to. It is a tough one, but we have had great difficulties with soccer and those kind of activities. I wouldn't neccessarily use the autism word, but have found I need to give them some sort of background so they understand my kids. I do use asperger's and tell them she has a mild form of autism. If I don't and my kids act difficult or odd, people get annoyed with them or start to talk to them in a way that my kids don't understand or will upset them more. I am pretty open with it now, more so than before. Around 1st grade we tried not telling people and it didn't work for us. I find it important to educate other about the spectrum of autism as well.

As for my kids, they know their brains work differently, but they don't have a label for it. We also emphasize that all people are different and that is what makes them special. I also emphasize the positive parts of their differences. My kids are both lucky to be gifted in some ways, fabulous readers, a bit hyperlexic and great visual memory and visual skills. They are also honest, trusting and great kids. I approach it as they ask me or when the moment is right. Teachable moments. And only give them enough info that they understand. I don't want them to think they are broken or bad so I don't want to hide it either.

As for OT and PT, it depends on what he needs it for. My dd benifited greatly from it, but she was delayed in gross and fine motor skills. If it is for sensory, then sensory OT and a sensory diet helps too. Many kids with AS need OT but not all. Some need PT, but I don't think it is as common. Make sure to have and OT and PT eval done through the school as part of his evaluations to see if he has needs in these areas.

Renee

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Avatar for maresgood
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Registered: 03-27-2003
Mon, 04-28-2003 - 4:23pm
Hi, & welcome to the board. I just started posting here too. My dd is 10 & was just diagnosed this yr. She has always been anal retentive, no other way to describe. If we travel, she won't go for days. This has been going on for yrs. She will sit in the BR for over an hr. I'm a nurse & I know this isn't normal. I hope she isn't straining or she will have problems as she gets older. We have tried to give her fiber, drink more water, etc. I've talked to my Docs about this. Nothing will change I'm afraid. As long as she goes every other day, I'm happy !LOL What we Mom's talk about. MaryAnn
Avatar for kingalex
iVillage Member
Registered: 03-27-2003
Tue, 04-29-2003 - 1:13pm
Deb -

My aspie son, Alex, just turned 6 last week and is in kindergarten. I'm afraid I don't have any brilliant answers for you, as I'm struggling with the same issues, but hope that someone can shed some light on these subjects!

Alex is still not potty trained. He will stay dry ONLY if we have him go to the potty on a regular basis. This is written into his IEP, and his resource teacher makes sure that he goes at least twice at school (he's only there for 1/2 day, but next year will be full day). As for pooping in the potty, he ABSOLUTELY REFUSES. Our pediatrician suggested that we at least get him to ask to wear a pull-up when he has to poop, but dh and I decided that as of his 6th birthday, no more pull-ups during the day; he'll HAVE to go in the potty. So far, no luck - he's still pooping in his pants. I'm trying so hard to rush him to the bathroom when I see that he has to go, but he's learning to do it in those few moments during the day when I'm not watching. I am SO frustrated by this whole thing, and would love to know what other people do in this situation.

I've learned that disclosing Alex's diagnosis to certain people is necessary. I, too, find myself in situations where people just think Alex is annoying, or behaving very badly, and realize that he's accepted more readily if they are aware of his diagnosis. My biggest concern right now is not the adults so much, as it is his peers. He's accepted in his kindergarten class, but I know kids can be mean, and his odd behavior may pose a problem in later grades.

Alex currently receives OT and PT services as part of his IEP. I find that because his motor skills are delayed, both specialists help him greatly. He still walks down steps one foot at a time (rather than alternating), and has no desire to ride a bicycle (with training wheels).

Okay, this is getting a little wordy, so I'll sign off here - welcome to the board, and I hope that we can all find some answers to all our questions together!

Laurie

Laurie