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" In a box not a bottle" Asperger's revealed


Seraphim
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Some parents in the meeting were questioning why I want my son to graduate when he is 17. He can legally be in high school until he's 21 due to disability. But I said ,no ,he has the credits to graduate and he has the ability to graduate why hold him back? It is also very important to him that he graduate with his peers he made that perfectly clear to me. Why would I socially embarrass him when he has a hard enough time? No ,I'm completely secure in his ability to graduate. We just had parent-teacher interviews today and neither one of his teachers had any problems with him whatsoever or felt he had any problems getting through the class. They both said he's very dependable and very hard-working and gets to work. His math teacher also said even though he misses half a class every week he is still not behind. So she's completely secure in the fact that he will graduate this class. They both told me they have no concerns about him whatsoever. There's no reason at all to hold my son back.

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One of the things I talk to the other fellow last night about was a Henson trust.

 

I'm still really trying to wrap my head around the fact that my son may be with me until I'm ready for the retirement home. They can do everything everyone else can do it just may take them 10 or 15 years longer. These were not the dreams that I had when I gave birth to that little tiny boy 17 years ago. I would never want anyone over him and I love him to death but you still have to mourn the loss of the life that you thought you would have. It is lucky he was born when I was 30 years old because I may never have my own life back.

Edited by kamurj
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  • 2 weeks later...

The lady was saying they've started a new ABA class for kids 15 to 18. I talked to my son about it and he said there's absolutely no way he's going and he stomped off to his room. He will end up going ,we get this defiance when he's crossed with something he doesn't know. Change is extremely difficult for him. And when he gets anxious or uncertain he gets defiant.

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Well ,another roadblock why am I not surprised? I met with the lady from community assessment services and she said most likely my son will not qualify for anything from the DSO or the ODSP. She said he is simply too high functioning. He's in the 13th percentile and they have to be in the 2nd percentile or lower for functionality. So we might privately have to pay for a worker and ABA privately. She did put in an application to the DSO though and if it's rejected I can appeal. She said he may later qualify because he can't write or if he crashes and burns as far as anxiety goes.

 

She said again too that we've done exceptional job as parents and we have helped to make him very very high functioning. But due to the fact of his own skills and the fact that we've done an exceptional job as parents and I instinctively knew how to help him that yeah we may not get any support.?

 

She did put in an intake for him though so MAYBE he might get into ABA with them.

I am also registered for parental ABA.

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That's too bad that you won't qualify for help. Hopefully if you get denied, they will grant it to you on appeal.

 

It's amazing how far your son has come along. I agree with the lady, you guys are exceptional parents

Thanks Ren. We really need the DSO to accept the application. If they accept the application then he will have his own case worker and an adult protective worker. When we are gone he needs protection and an income. That is why it's vital they accept the application.

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I have to take my son to the doctor because he's short of breath and tired. It could be he's suffering from anemia again. People with autism often suffer from anemia. He has had anemia in the past.

 

Is that a biological reason or because of an increased tendency not to eat properly? I hope he does well with the iron (it messed up my stomach as I am sure you're familiar with) -hopefully there's a way to combat that!

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Nobody seems to be giving a definitive answer as to why so many children with autism have low iron. It seems to be one of the features of autism in a lot of people. I'm sure it's exacerbated by their limited eating patterns.

 

Some studies are linking it to low maternal iron during pregnancy. But I didn't have low iron at all. In fact mine was exceptionally good. They told me I have the iron count of a man. My normal iron count even when pregnant was 140.

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Well, children with autism seem to have a lot of issues with anemia and gastric problems. They can't decide if the autism causes anemia and gastric problems or the anemia and gastric problems cause the autism. But an overwhelming number of people with autism have anemia and gastric issues.

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I'm kinda sick of hearing about Aspergers as a "disability." It is a "difference" for sure, and growing up I had every. single. symptom. Undiagnosed because it wasn't even named until I was a senior in high school. So I was depressed, felt outcast, like an alien, who just couldn't communicate with the creatures on this planet I was on.

 

I never was on a sports team, never dated, didn't have many friends. Instead I would tape cartoons and go home and watch them in slow motion and record the movements so I could draw animations. I escaped the world through art, and that carried into my college years. I almost had a boyfriend there…poor guy had no idea what he was up against. Whatever I was interested in, I was an expert in, to the exclusion of everything else. It nearly ruined me, but then I found a career where concentration, doing things the same way over and over and near ritualism are actually something that others have to work at. So I was awesome at my chosen field.

 

Then I heard about Aspergers, because my boyfriend of 4 years had about enough of me and was trying to figure out why my "communication" wasn't what he needed in a relationship. I took all of the tests and scored at the far end of every chart, every time, again and again.

 

Here's the deal.

 

There is no "disability." A lot of people on earth are wired with DC Power. What you see is what you get. Input=Output. Then there are some of us with AC current that just can't plug into the power outlets the world provides. We come without a rectifier to help us translate our wiring to yours. So instead of telling us we have to accept that we're disabled, instead people need to see that they are not built like the others in the majority. You have to learn to slowly build your translator….your transformer rectifier that translates our AC to the world's DC.

 

But you can't expect them to change. It's an inherent wiring difference and it's for a reason. Kids/people wired in the way society has labeled "Aspergers" are uniquely suited to things that others are not. Only they can do what they can do and if anything, it's the job of the parents and teachers to help the find what that purpose is, not feed them with the lie that they are disabled.

 

Yes there are different subset levels and no one is the same, but one thing is for sure. People with the label known as Aspergers are not stupid and understand when they are being called "deficient" and "less than the others." They need to be talked to differently, interacted with differently and what may seem like something stupid to someone "normal" like a loud noise, could be earth-shattering to someone with a different neural wiring.

 

Being the majority doesn't make something "right" and being a minority doesn't make something "wrong." Fact is, if you called me on the phone what you'd hear would be less than impressive, but because writing slows my thoughts down to the speed of my hands, I can communicate in a way that I can't verbally.

 

I'm just saying. Take it from someone who has learned to see this as a HUGE advantage, rather than a detriment. I'm socially "dysfunctional" by every definition, but what I have done in my life is far in excess what people think of when they hear "mentally disabled."

 

If I could say one thing to every kid with Aspergers, it's that there is nothing wrong with you. You are tuned to a different frequency that the others can't receive. It isn't about medication and forcing you to "be like the others." It's about realizing that "Aspergers" people can do things that others can't, and it should be something they learn wear proudly.

Edited by pilotgirl
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