New to this forum- 8 years in past diagnosis

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seebert
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09 Jul 2009, 2:23 pm

I'm new to this forum- though I was well known at one point on alt.support.autism, and I've been online in various forums since 1983 on Fidonet and 1989 on Usenet and 1995 on the web.

I was 30 when I was finally diagnosed- I fit 10/10 for the behaviors. My main physical symptoms are SPD, disgraphia, and migraines- so I went into software engineering where I could type everything and sit in small dark rooms talking to nobody. I've been married for 10 years to an NT, but she's got learning disabilities as well (mainly a strange form of dyslexia where she spells the words right but gets the meanings mixed up- reading her emails is hard- but we say between us we've got a complete brain between my perfect grammar and her perfect handwriting). We have a 6 year old son with Cerebral Palsy in the language center of his brain- he's had troubles learning to speak, read, and write and oddly enough with feeling pain- for that last he isn't potty trained yet because he can't tell ahead of time when it is time to go to the toilet. Hasn't affected his coordination at all- he can do *all* the sporty things I couldn't at his age, once you figure out how to communicate to him what he's supposed to do.

I call my son Christopher the anti-Aspie; his personality is exactly opposite of mine. Where I'm "Dennis from Head of the Class", he's "Vinnie Barbarino from Welcome Back Kotter"- right down to success with women in that he's already got a girlfriend at age 6.

I was diagnosed 8 years ago during a big downturn in my life- when I was unemployed for nearly 3 years. It was during this period that my son was born, after I had almost all sense of self ripped away by unemployment. The diagnosis helped me in two big ways- I began consciously working on coping skills to make me appear more functional than I really am, and I was able to use the diagnosis to get a government contract that lasted nearly 5 years before they figured out I was unable to conform to the policies of the department I was working in.

I'm now working for a small consulting company that is far more accommodating than any bureaucracy job could be- merely because as a small company they are flexible. I might even last here more than two years in that they just found a contract for me with Intel that starts soon and should last two years. If so, it will be the longest I've worked at any non-government job.



j0sh
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09 Jul 2009, 2:30 pm

You and your family sound very interesting.

Welcome to Wrong Planet.



Alphabetania
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09 Jul 2009, 2:50 pm

Boy, that is pretty impressive. In theory -- according to mainstream society -- you and your wife should not even be able to cope with just being yourselves individually, let alone sustain a relationship and be good parents to a child -- a disabled child at that!

Welcome!


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seebert
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09 Jul 2009, 3:11 pm

Alphabetania wrote:
Boy, that is pretty impressive. In theory -- according to mainstream society -- you and your wife should not even be able to cope with just being yourselves individually, let alone sustain a relationship and be good parents to a child -- a disabled child at that!

Welcome!


Part of it is our religion and attitude towards divorce- Roman Catholic, and we're both so stubborn that murder is a more likely end to our relationship than divorce (just joking, neither are very likely, we have a very good relationship built on mutual trust and hard work at communication rather than mere love and lust).

But I find it amazing that *anybody* from her side of the family does well- it's because they have a good attitude about their disability (dyslexia runs in the family) and are willing to find workarounds for it (her father was a manager at Oregon Department of Transportation- he knew upon becoming a manager his dyslexia would get in the way, and he hired 3 people just to work the computers and do paperwork for his division). I was married before I was diagnosed- but was so impressed with that story that I took it as a model for my own disability.

When Christopher was diagnosed at age 3- we had already noticed the language problems and he was in Early Intervention- my first reaction was dismay. Here I hoped to have him reading by three (like I was, one of the benefits of my Asperger's), and he was barely talking. But after a while I thought about it- and realized that we were the best parents possible for a special needs child! We've been there ourselves. Luckily, his CP also doesn't quite fit the stereotype- due to where the scar is in his brain, it hasn't affected motor coordination at all, and the worst fear we have for him physically is that he'll need pull-ups his entire life or that he'll break an arm falling out of the treehouse and just laugh it off and not tell us (pain does not seem to be wired properly in his brain).

Oh, and on the religious side of things, though I doubt this will be a very welcome message given forum rules and what some people think about Catholic doctrine towards homosexuality, there are some *real positives* in a marriage between an Aspie and an NT when it comes to conservative religions. Doesn't have to be Catholic- but any religion with a well-defined and ancient tradition that is extremely ritualistic would be good for such a marriage. Such religions give the Aspie a regular outing where s/he doesn't have to worry about social rules, because they are so well defined. And it gives the NT spouse a regular outing in a social situation where they can react normally. The only thing I'd caution on is for children- make sure they know the script ahead of time and know what to expect. And look out for overstimulative triggers- for instance, I can't stand a Catholic Mass with violin solos in the music, it's a migraine trigger and causes physical pain for me.



Alphabetania
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09 Jul 2009, 3:22 pm

I agree with you about the safety provided by religious rigidity. I was a member of a church which was very radical and I felt safe within the system, not like an odd outsider -- until everything fell apart due to a lack of love and some very harsh and legalistic ways of implementing the church's goals. And I fell apart too, and so did my marriage.

I also read pretty well before I was 3. And married a dyslexic!


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seebert
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09 Jul 2009, 3:47 pm

Alphabetania wrote:
I agree with you about the safety provided by religious rigidity. I was a member of a church which was very radical and I felt safe within the system, not like an odd outsider -- until everything fell apart due to a lack of love and some very harsh and legalistic ways of implementing the church's goals. And I fell apart too, and so did my marriage.

I also read pretty well before I was 3. And married a dyslexic!


Well, the reading is one of the gifts of Asperger's. But note in my little bit on religion, I mentioned ancient traditions. A good part of choosing a religion isn't just rigidity- an Aspie needs a religion that will outlive him/her- and that means choosing one that has been around long enough that it isn't likely to fall apart.

Before I was diagnosed, I was always into creating my own social theories. One of those I created was the lifecycle of religious sects (and in Christianity, it restarts every time a new denomination branches off):

1. Cult of personality- founder is still alive and is holding the religion together through charisma/force of personality.
2. Cult of tradition- founder has just died within the last century, and members are holding on to what teachings of his they can remember. Evolution begins at this stage weeding out doctrines that don't work.
3. Cult of persecution- the wider society notices the stranger aspects of the new sect, and begins to persecute them, sometimes with great hatred and even death.
4. Governmental control- the new sect gains some aspect of control of secular society, and becomes more accepted
5. Loss of control/reformation- the sect, several hundred years old at this point, loses control. New child sects are formed and start over at 1.
6. Counter-reformation- the last doctrines scaring people away drop off. Legalistic and harsh teachings become soft, accepting teachings.
7. Acceptance- the religious sect is now mature and ready to make peace instead of war.

I'd suggest that for Aspies, any religion that hasn't reached stage 4 is too unstable to base a life on. Perhaps even stage 7, depending upon your personal ability to accept change (which most Aspies aren't very good at). Luckily, there's usually several hundred years between steps after stage 4- so things may well stay the same throughout a single human lifetime. Before stage four, a single human being might live through all 4 stages- and that's incredibly disruptive and the religious sect could self destruct at any time.

Thus I'd say, your former church was likely far too radical- and the sect it belonged to likely was someplace between 3 & 4.

BTW, my research at the time found that Buddhist and Hindu sects often went through EXACTLY the same 7 steps. As did most shamanistic tribes. As most Islamic sects were still too young to have reached step 6, I have no idea if it holds true for them, despite their rigid traditions.



richie
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09 Jul 2009, 4:46 pm

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To WrongPlanet!! !Image


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09 Jul 2009, 4:50 pm

It's nice to meet you, seebert. Welcome to the Wrong Planet Community.


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ViperaAspis
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09 Jul 2009, 5:10 pm

Heck, I've always wanted to start my own religion :twisted: . I've got the horns for it after all..

I liked your post. Welcome to this family. If it is easy for you to get downtown, there's a PDX ASAN meetup you might be interested in attending. They have get-togethers and the occasional bit of activism. You can check it out at meetup.com if you're feeling social.


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seebert
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09 Jul 2009, 5:20 pm

ViperaAspis wrote:
Heck, I've always wanted to start my own religion :twisted: . I've got the horns for it after all..

I liked your post. Welcome to this family. If it is easy for you to get downtown, there's a PDX ASAN meetup you might be interested in attending. They have get-togethers and the occasional bit of activism. You can check it out at meetup.com if you're feeling social.


I'm a member of the meetup group- though I've been labeled a bit of a bigot there (I am- in that while I intellectually understand homosexuality and racism, I have not been able to eradicate homophobia and even a certain amount of other-culture-suspicion from my behavior, and, as you see above, I'm Roman Catholic and that means I accept certain doctrines that advocacy movements are often afraid of). Unfortunately, the ASAN meetups are usually when I must be at work.



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09 Jul 2009, 5:20 pm

Quote:
We have a 6 year old son with Cerebral Palsy in the language center of his brain- he's had troubles learning to speak, read, and write and oddly enough with feeling pain- for that last he isn't potty trained yet because he can't tell ahead of time when it is time to go to the toilet.


Strange that I decided to read this post when I did (I was drawn in by the above user's username). That sounds like my son. He's 4, with language, potty training and coordination issues. Also feeling pain. I actually guessed CP in on of my prior posts about him on this site, he's been evaluated as having learning issues and people have thrown the word "autism" out/then others have told me he's not autistic for sure.

Anyway, enough about me. Welcome to WP, consider me shaking your virtual hand. :nerdy:



seebert
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09 Jul 2009, 5:31 pm

patternist wrote:
Quote:
We have a 6 year old son with Cerebral Palsy in the language center of his brain- he's had troubles learning to speak, read, and write and oddly enough with feeling pain- for that last he isn't potty trained yet because he can't tell ahead of time when it is time to go to the toilet.


Strange that I decided to read this post when I did (I was drawn in by the above user's username). That sounds like my son. He's 4, with language, potty training and coordination issues. Also feeling pain. I actually guessed CP in on of my prior posts about him on this site, he's been evaluated as having learning issues and people have thrown the word "autism" out/then others have told me he's not autistic for sure.

Anyway, enough about me. Welcome to WP, consider me shaking your virtual hand. :nerdy:


I KNOW my Christopher isn't autistic- if anything, he's a bully (always wants to force other kids to play what he wants to play, and he's enough of a leader to get them to do it at times).

Weird story though how we got Christopher's diagnosis: He was born with a mild club foot. We were told early on to massage it out and it would probably be normal- but then we lost insurance coverage. We were unable to regain insurance coverage on him because that was a pre-existing condition (even though, by that time, it was almost gone), so we got a referral to Shriner's. At Shriner's they congradulated us on the work we had done on the club foot, but they said "His arches are high, we'd better send him to a neurologist"- he had only just learned to walk at the time. The neurologist said "His arches are fine, but his head's too big, I want an MRI" (good thing this was Shriner's as we still didn't have insurance at the time)- he was worried about water on the brain. The MRI came out fine- except for that little minor scar. And that's how we got the CP diagnosis, and finally learned why he wasn't talking yet.

Insurance, of course, is still a problem. Between my Asperger's and Christopher's CP, it's beginning to look like Oregon Medical Insurance Pool is our ONLY option.