[tri-med] Re: Older boys and behaviour

----- Original Message ----- 
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
> We are having a terrible time with behavioural issues with Alex. Its all 
> totally out of the blue which is what is so distressing. We have never 
> seen anything like them before. In the scheme of things the behaviours 
> aren't "that" bad, they are just of concern because they are so totally 
> new.
> He suggested that it was indicitive of Alex being on the spectrum. 
> Adolescence and high school being the triggers for the behaviour. I didnt 
> really want to go there but after we came home I raised the possibility 
> with his aide and a friend whose son has Aspergers. They both agreed that 
> it did fit although it would be mild.

Karen,

I've pondered this post for a few days. As you may or may not have seen, a 
month or so ago I posted some similar issues with our Alex.

We saw some changes when he started hitting developmentally in those early 
teens a few years ago. He's ALWAYS lagged chronologically, that even remains 
true today.
While his age is 21 his attention, behaviors and understanding are more 
early to mid teen depending on the topic and situation.
Behaviors that are totally foreign to us, don't know exactly where they came 
from or what to 'do' about it.

Jim and I have talked and talked about it.

Our feelings are:
1. Alex is aware of the fact that his is 'different'. Especially in high 
school, we began to see a shift in his attitudes and behaviors. Not 
necessary atypical in ANY child in that situation but..........

I think that knowing you are viewed as 'less' can make your actions and/or 
perceptions shift. You get a shell, or you try harder to fit in by shifting 
your personality, actions and beliefs.

Basically, if it's not working try something else and see if it will. Even 
in the negative spectrum.....bad attention may be more desired than none at 
all.

Now, keeping in mind that you, like Jim and I, have done good parenting, we 
are not ignoring our children.
To the contrary, I know that you, like us, has spent WAY more hours than the 
norm working with and for our Alexs. Oh my heavens, WAY more hours.......

2. Alex tends to drift and not have any 'real' friends. I think that by 
shifting some of his behaviors he was attempting to 'fit in' more as far as 
HIS perceptions saw it.

3. Those that took him in were those whose.....behaviors/beliefs.....are not 
those we raised our child with.

Again, even 'typical' kids get sucked into this.
However, when our kids get in this situation is has that weirdly strange 
'trisomy twist' that our gray zone dwellers deal with. A foot in each world, 
complicating each world, not really a part of either place. It can be 
lonely, not just for them but us as well. And it's just not something that 
everyone can understand, those extra complications to an already complicated 
situation.....the twists and turns.....

4. We don't  believe that it's necessarily that Alex is acting out or being 
deliberately belligerent. He's trying to be an 'adult', something he'll 
comment on when we're discussing things and he it comes out 'my friends 
can't believe how you treat me and you can't tell me what to do because I'm 
21'.

5. I really think that it's more a case of Alex being lost in the world, 
trying to find his place.
And it's a hellishly challenging world for him. When he does get a chance, 
99% of the time he's shut down before he starts: short stature, slow on the 
uptake, somewhat muddy speech, 'weak' looking, teeth discolored by years and 
years of antibiotic use and excessive plac, eyes that wander.

We were so thrilled when he got this daycare job. And for 4 weeks it was 
working. Then school started and the daycare numbers have dropped (a major 
daycare just closed locally due to lack of numbers, the unemployment rate 
and people leaving the area are cited) esp because all the school districts 
have multiple on site latch-key programs now. Then a woman came back from 
maternity leave.
He's not had hours for 4 weeks.

For the last 8 months that Alex has been unemployed he's got no focus, no 
money and seems to be taking an attitude I just don't get.

On the upside, we heard that the school district was hiring for before/after 
school child care. He's applied and I've heard (another swim Mom put us on 
the track for this and has talked with the woman running the program) that 
he's going to be interviewed.
So please cross your fingers and send out good vibes.

Jim and I are at our wits end. We don't know how to 'help' Alex. The 
developmental delays, lack of understanding (due to his genetics not his 
attitude)........

So I get what you are saying completely Karen. Wish I had some insight or 
advice.

Michelle mom to Alex (21,partial trisomy 14 mosaic) and Molly (17)
MichiganUSA 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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