August 2, 2008

Being trans-parent...

I am afraid to be transparent. You don't wanna hear about my problems. But I need to talk about my problems so that I can process them and move past them. You, however, do not have to be here if you don't want to; so, read on if you want to but don't bitch at me if you don't like what you read.

I am so angry, disappointed, hurt, bewildered by my son's behavior. But before I go through that; I want to put down the back story.

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As sands through the hour glass....

...so are the days of our lives. That would make a good opening to a soap opera. Oh, that's right it is... sigh. I have often said that I don't need to watch soap operas because my life is already too much of one. As is evidenced by recent events.

Back Story: My husband and I have a 18 year old son, Bubba.... Long story...J and I met in 1988at the Blue Moon Tavern in Seattle. It was definitely attraction, fascination, both physical and mental, at first site. We were pretty much inseparable after that point. I got pregnant (w/B) and neither of us was at a point where we could really commit to a relationship, so I moved to California to be with my Mom. I married someone and tried to make him J; J married someone and tried to make her me, obviously THAT didn't work. So, 15 years later, I finally got smart and kicked my husband out, began divorce proceedings and called J to see if he wanted a relationship with his son. Unbeknownst to me, he was also in divorce proceedings and when we finally talked we realized that we still loved each other, that attraction/fascination had never gone away. So, I moved to Washington to be with J and moved B up a few months later (he stayed with his grandma while I found a job) so we could start a whole new life as a family. This post is going to be a lot longer than I thought it would be but hang in there 'cause there is a point. :o) If you wanna keep reading go for it; if I've lost you, well...not much I can do about that...cause, well, this is my life. So, Andrew was diagnosed when he was about 5 with ADHD. He has been on a couple different meds which seemed to help with some of the behaviors but not all of his behaviors fit with the ADHD diagnosis. As he grew up I called him my 'absentminded professor', he was obviously smart, good sense of humor, seemed to do ok with change, but would over focus on things he was really interested in and could talk your ear off about certain things he would learn about. His language developed fine but not so his math abilities. So, when we moved him up here we knew we would have some transistion problems but nothing like what we encountered. We had a group of professionals telling us yes, he's depressed, and obviously has ADHD but your not doing enough at home, he's not doing enough at school....basically, he's lazy and unmotivated, your a horrible parent - get your act together. We requested more testing, an appt with the school psychologist and were told (by the school psych) that B did not merit any further testing, no special education services because his literacy scores were to high. Whatever! Things did not go well at all. B was disrespectful, rude, stole things, hugely disobedient, and lied about multiple things. Remember, at this time we only had an ADHD diagnosis, nothing else. None of us had heard of Asperger's yet...

B ended up moving back down to Fresno to live with Grandma. Mom got him into school down here and they settled in for the long haul. It wasn't long before more behaviors started showing up. Wild storytelling, writing his stories in class instead of paying attention, yada and yada. So, he ended up getting a first class ticket to see the school psychologist. Finally! Someone was paying attention.

If you have hung in so far, good for you - cause the payoff is coming soon! :o) Mrs. M, the school psychologist, was wonderful. She spent time with B, took him through different tests, had meetings with my mother and B and his teachers, she will forever be on the top of my "I love you so much - Thank you for paying attention" list. Score! At the last Parent-Teacher meeting, she had an new area for us to explore - big drum roll here- ASPERGER'S SYNDROME..... Now, while I know that as a parent you never want there to be something wrong with your baby, when there is something that makes your baby so obviously different than other kids (to you anyway), you get rather excited when there is something that actually explains all the differences and the odd reactions, and the funny way he has of looking of at and thinking about things, and so much more. If you have never read about Aperger's I recommend you do. It is quite fascinating - and as my mother and I and B and J read all about AS and the behaviors associated with AS - we were all quite blown away.

J and I made the difficult decision to move to California so we could help my Mom and B. I was under no illusions (or so I thought) that things were going to be easy; I never knew they were going to be as difficult as they have been.

AS will never go away - you learn to live with it. And there are a lot of people with AS that are living quite successfully. Our household is NOT a shining picture of domestic bliss at this time. B has to be dragged, kicking and screaming, to get him to do anything. Apparently, we don't have enough authority to change the rules in his head.

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So, that is the short version *snort* of the back story. B has been seing a counselor regularly since the beginning of the year. B's official state diagnosis is severe depression (the state won't cover treatment for AS because it is not a mental illness). His counselor is going to refer him to a program that will teach life skills and social skills; help him re-wire his thinking and adjust the rules in his head so they are more socially acceptable.

Time for bed; more later

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4 comments:

  1. Yay, I found your blog. Was looking the other night but was coming up empty.

    So many years and no dx -- ugh!

    In my opinion, the isolation is the worst as a parent. Isolation from other parents who 'get it,' isolation from understanding AS, isolation from getting supports and services in place -- just for a few examples.

    That's just us as parents -- I cringe when I think how isolated my son was from anyone who understood him (often times even us, his parents).

    Hang in there -- all of you! :)

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  2. I, too, got my son a diagnosis well into his teen years. We seem to be thoroughly in the middle of hell now. So is Andrew "Bubba"? Just trying to keep it all straight.

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  3. As I was reading this, I was going to guess that was his diagnosis. It sounds like you have been through so much... I can't imagine what you are going through. I have a friend going through something similar and it is heart wrenching.

    Did you know there are a lot of very famous, intelligent people with aspergers? http://www.disabled-world.com/artman/publish/article_2086.shtml

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  4. Hello OneOddlyLuckyWoman! Just sent you a tweet... My daughters ages 2 and 6.5 both with ADHD and probable Aspergers. Just a wait and see game. I write about my struggles as a mom going thru the school muck and endless doctor diagnoses.

    Seems so easy to diagnose, yet so hard to manage as parents! These are the days...

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