Parents of Aspeger's (AKA Aspies) Children

[Griff]

Beautiful work Philo. Working with kids on the spectrum, I can see how important good strong effective parenting is. Some parents get so beaten down they just can't carry on. You are blessed having the strength and know how to put your child on the road to success. *Big pat on the back!*

[Rock Steady]

I'm glad I found this thread; I wasn't around when it was last active.

I just wanted to register here as a P of A; my 19 yo son was diagnosed in 1997 and retested in 2005. He is a senior in HS and will graduate this December. He has a big score gap between Perfomance versus Proceesing Speed. While many kids with diabilities have a gap of 60% versus 20%, Rock Jr has a gap of 99% versus 30%. He's high functioning but really slow at it, frustrating uninitiated teachers. Health professionals are reluctant to name a specific condition. It's Asperger's like with a strong indication of Non-Verbal Learning Disorder.

We are in the process of researching colleges, trade schools, and possibly therapeutic living environments. I will post some info about this post-HS stuff at a later date.

There's a lot to catch up with on this thread. So, I won't comment more until I read more.

[staceyv]

I told you about this thread when you came out of the closet! Where's my credit?

[Rock Steady]

Originally Posted by staceyv

I told you about this thread when you came out of the closet! Where's my credit?

Yes, staceyv, rawks. Thanks for the pointer. Anymore of this behavior and we'll think you're a bigger attention whore than Gwennie! if that's possible.

[LabRat]

I wish the world worked in a way that people actually got what they really deserved, because a lot of people here should be Kings and Queens for who they are inside. Reading a thread like this reminds me that I need to shut up about my pittily little problems and refocus on the big picture. Thank you for sharing. My parenting skills can always use some sharpening, and I get lots of ideas here for things to do to help the RugRat be the best she can. All of your kids are very lucky to have such wonderful parents. At the risk of sounding really stupid and cheesy, you are an inspiration to me.

[BigV]

*whew*

I have read the whole thread and began my reply to MBJ, but I see her (?) remarks are many months old, so...I'll recast the thoughts a little differently.

HouseofV has two sons in it, and both have reasons to have special programs at school. One is deaf and the other has epilepsy. The IEP is invaluable as a support tool. It does a couple of critically important things: It calls attention to your child's needs. It gives you leverage to compel the school district to do what needs to be done, in a language that a bureaucracy understands.

This is really a testimonial to the value of an IEP. Get one, demand one and stick to it and make them stick to it.

I would also like to echo LR's comments. The parenting triumphs hinted at in this thread are humbling. They say that parenting is the last great refuge of amateurs. Amateurs, maybe. Virtuosos, definitely. *applauds*

[richlevy]

The PATTAN website lists conferences for teachers, individuals, and caregivers in Pennsylvania.

We will be attending the Pennsylvania Community on Transition Conference 2005 - Strengthening Transition: Achieving Results.

The 2005 National Autism Conference is Aug 1-5 in State College, Pennsylvania.

Unfortunately, I have no vacation time left to attend the National Autism Conference.

[Brett's Honey]

I'd like to ask a question - for any of you terrific parents who may respond - do you spend much time or energy dealing with the "why?!" part of your children's disabilities? I know you have to wonder at times, but do you spend much time researching the possible causes, etc.? I seem to have dealt much better than my kids' Dad has, with the guilt issues that every parent has when they lose a child. My ex is convinced our daughter developed childhood cancer because of his work in a local refinery. I stopped researching neuroblastoma a few years ago, although I did try to research it a lot for several years. Our situation is a bit different of course, because we no longer had her here to focus all of our energy on, but I would really like to know how you guys deal with this part of your kid's disabilitites. Thanks.......

[richlevy]

Originally Posted by Brett's Honey

I'd like to ask a question - for any of you terrific parents who may respond - do you spend much time or energy dealing with the "why?!" part of your children's disabilities? I know you have to wonder at times, but do you spend much time researching the possible causes, etc.? I seem to have dealt much better than my kids' Dad has, with the guilt issues that every parent has when they lose a child. My ex is convinced our daughter developed childhood cancer because of his work in a local refinery. I stopped researching neuroblastoma a few years ago, although I did try to research it a lot for several years. Our situation is a bit different of course, because we no longer had her here to focus all of our energy on, but I would really like to know how you guys deal with this part of your kid's disabilitites. Thanks.......

Well, first it depends on the disability. Some, like Tay-Sachs, are obviously genetic. Autism at one point was considered behavioral, the result of bad parenting. Now it is thought that it might be genetic or environmental, the result of exposure to mercury or some other chemical.

The science on issues like cancer is very difficult. For one thing, cancer can occur for no obvious reason. The only way to measure if proximity to a chemical plant is the cause is by looking for cancer clusters. Sometimes this evidence is enough to assign blame to the company.

Autism now is treated more as a symptom than anything else. I have really not paid much attention to the research because of all of the conflicting information being presented. I don't really spend much time thinking about it because there was really nothing we could have done to prevent it. There were no blood tests for Autism genes when we were married. Even now, I can't be sure if it was the doctor's fault for not inducing labor when there were signs of distress, mercury timerisol in a vaccination, our living near an industrial area, or genetics.

I would like an answer someday, even if it is one I don't like. However, I might have to wait another 10 years for the research to present me with one, and in the meantime I intend to deal with the reality.

I hope everything worked out alright with your daughter. I couldn't tell with your statement. The fact is that it might not have been the job so much as the location where you lived. It's very hard to find out how many chemicals are released by plants, even when they actually file their reports and don't lie. Sometimes the industries which supply the jobs to support our familiies are the ones which pollute the environment around them. Not working for a company is not a solution, since entire regions can be affected. The only real solution is to make enough money to afford a house far away from an industrial location.

If I had a tool like Enviromapper when I bought the house where my kids grew up, I would have at least had more data to make an informed choice.

This map is where we first lived. Green = hazardous, Blue = toxic release, Orange = Superfund, Red = Water Dischargers

[wolf]

If you map your current address, it would likely be similar or worse. Actually given your primary proximate industry, I'd guess worse.

[glatt]

I just checked the EPA map for my own neighborhood, it appears to be just a map of gas stations and dry cleaners.

[wolf]

I mapped my area ... you can't see the town names for the dots.

[BigV]

BH:

Yes, of course, we ponder the "Why?", but for myself, once we were over the initial grieving period (like that first ding in the door of a new car, y'know?), the "Why?" was only important in the context of "what is the best strategy to cope?" Naturally, why is important, but it doesn't reign over our lives. Even in situations where the disability is "reversible", like with hearing aids or cochlear implants, the why factors into the decision. But. But for us, the how will you get along each day was the major focus. How will we prepare our young child (formerly young child, off to university this fall!!) to cope. That's the focus for us, really. Coping.

[skysidhe]

Originally Posted by Rock Steady

I'm glad I found this thread; I wasn't around when it was last active.

I just wanted to register here as a P of A; my 19 yo son was diagnosed in 1997 and retested in 2005. He is a senior in HS and will graduate this December. He has a big score gap between Perfomance versus Proceesing Speed. While many kids with diabilities have a gap of 60% versus 20%, Rock Jr has a gap of 99% versus 30%. He's high functioning but really slow at it, frustrating uninitiated teachers. Health professionals are reluctant to name a specific condition. It's Asperger's like with a strong indication of Non-Verbal Learning Disorder.

We are in the process of researching colleges, trade schools, and possibly therapeutic living environments. I will post some info about this post-HS stuff at a later date.

There's a lot to catch up with on this thread. So, I won't comment more until I read more.

RS. My son 17 sounds simular to yours. His score gap is 27% which is where the anxiety comes from??? He took a beginning programming class and thought it was too easy and boring?? I still don't know what that 'gap' means except for this. When my kid jokes about the military he says if there was an order to 'hit the deck' because of incomming missle or whatever he'd still be looking around saying, "huh,? wha....t?" .....

He begain his first successful school year last year. He is so smart but still He will be late in graduating . It has been the last three years he was afraid of busting someones chops and or anxious about the social situations or being in a class with kids with more problems than his own. He is in a good emotional space right now yet he is in the developmental space most middle schoolers are. He just learning how to be disiplined.. Last year he begain transitioning into regular class where he found himself feeling relaxed. He uses an emotional growth class as a home base in case of feeling overwhelmed but thankfully ( or ironically ) it is the special needs class that makes him feel overwhelmed. He has lectured his peers many times about how immature they are. AND THEY ARE. His teachers use him as a role model but I am not so comfortable with that. He dosn't belong there really but his anxiety disorder demanded some kind of accomodation. Now that he is older ...he just says, 'man I thought I was messed up' ( ironically refering to his classmates)' I guess I don't have it so bad' and signed up for a full load next year. ( I am kinda proud but realistic about that)
He too is planning on going to college.

Rock steady , I would like to know how your son managed getting through all his classes. You can email me?


anyway...

My son wasn't diagnosed until middle school. His early years were full of social activities and friends. I might have noticed if he hadn't have been an only child. I just thought he was perfect.:p I should have known that perfect wasn't perfect after all.
His first diagnosis from a psychiatrist was Non Verbal learning to our face but on paper it is PDD/Anxiety disorder. The anxiety is the true disorder and I blame the system it'self for it. He kicked a bully down in middle school and was suspended for it. The school cop threatned him that any further acting out and she would arrest him. So later During his assesment in middle school he yelled at the counselor. Our house keys flew out of his hand and hit me. This was infront of a room full of specialists so they knew too it was an accident. He was gestering and everyone knew it but the counselor called the school cop. She came to my house and arrested him. I would have stood infront of her but I didn't want to get arrested too. Of course, I immediatly called his parole officer and that was the end of her. ( he was out within an hour) I wish I could have had the counselors job too. Anyway he was too freaked out to go to school much. Until now. He is still really afraid of cops.


p.s. It wasn't until after meds that my son started talking and telling me where the anxiety was comming from. I wrote so many letters describing that situation to everyone in high places. The early years were volitile and I didn't want to mess him up further by getting arrested myself, or worse. He would have become higly aggressive if I would have been put in cuffs.

.............then it would have been worse much worse. He has it in him to let loose with 'whoop ass' and I have had to work long and hard on him accepting himself. He is not bad for having those tendicies. It's all about self control. We have choices.



I found some interesting articles about NLD and PDD.

http://www.nldontheweb.org/Dinklage_1.htm

http://www.autism-support-community....of_Autism.html