[tri-med] what to expect from our kids

 
Ohhh, that makes me sad in some ways. Actually, it makes me sad that all
people aren't like him. Thay would make for a great world wouldn't it? I
justworry about what Julian will have to face as he grows. I guess it's
sillycause he's so young and who knows how he'll be. Thank you for sharing
all that with me. I guess it gives me some hope but as I said earlier, it's
sad too. I wish people could be kinder. Once again, thanks Michelle. 

              Karen, Julian's grandma mosaic partial trisomy 1


----------------------------------------------------------------------------
From:  "jwaite" <jwaite@xxxxxxxxxxxxx>
Reply-To:  tri-med@xxxxxxxxxxxxx
To:  <tri-med@xxxxxxxxxxxxx>
Subject:  [tri-med] Re: orthodontics
Date:  Mon, 23 Apr 2007 13:34:35 -0400
>
>----- Original Message -----
>From: "Karen T" <saatsmom@xxxxxxxxxxx>
>>Michelle (Alex's mom),
>>I'm just curious if Alex is aware that he's "different" (for lack of
>>better
>>term)?
>
>Yea, sometimes finding the 'better term' is difficult at best......trying
to
>convey an idea but be tactful/politically correct!  lol
>
>I had to stop and really think how to convey my answer, not always
something
>easy to do with the written word.
>
>The answer is both yes and no.
>
>No in the respect that you can't miss something you don't know exists. Alex
>feels he's Alex, much the same way as most of us feel about ourselves. In
>that we are all different to some degree.
>
>Also, Alex is much like his Daddy in temperament/emotions, very laid back
>and accepting of things. Alex's personality isn't one to dwell (not often
>anyhow) on the bad or negative.
>
>I do believe that Alex internalizes some things, people who are mean/make
>disparaging comments etc hurt him but he doesn't get mad or complain.
>Sometimes I have to literally pull out of him what he feels about things.
>And often he doesn't quite now how he feels as he doesn't totally
comprehend
>what 'it' (the situation, remarks etc) means.
>
>Yes in the respect that he sees the differences especially when looking at
>his peers. They date, they grew tall (taller than Alex is anyhow, and that
>can be relative), they grasp more of the nuances of discussions and life.
>Alex recognizes that he doesn't have some of what most others have. Hope
I'm
>making sense here!!!!!!!!!!!
>
>Alex has developed coping skills. He'll laugh at things, appropriately,
>while not understanding what's funny. Took me a while to catch him on that.
>
>If Jim, Molly and I are having a fast paced and revolving conversation on
>say, politics or science, Alex 99% of the time doesn't have a clue as to
>what we are talking about. But he listens and occasionally asks a question
>or makes a comment (often not one that's on point or makes sense in the
>scheme of the discussion). He doesn't appear to feel left out.
>
>In many ways Alex is more like an 8-10 year old in his general life
>knowledge and conversational abilities. "Deep" discussions tend to go over
>his head.
>
>Alex is certainly a more compassionate and understanding teen compared to
>many of his peers though.  :0)   He has an innate ability to see
>the.......humanity....of individuals.
>There have even been times when someone has dised him (quite obviously) but
>Alex will say "maybe he's having a bad day". In that respect he's a better
>person than I am!!!!!!!!!
>
>In many ways Alex is, and it appears to probably be a life long thing, a
>youngster. He sees the world in that way and thinks in that manner. But
it's
>all he 'knows'........and most of the time he's fairly content with his
>place in the world.
>
>Alex does know of his genetic status, something we waited to explain to him
>3-4 years ago. I don't think he completely grasped the whole picture, of
>course, we also explained that EVERYONE is different and that some people
>have issues that he doesn't (in terms of general population, like
accidents,
>abuse, self-destructive behavior).
>
>Gee, I hope that I've explained this somewhat coherently! It's a hard
>concept/situation to explain in one e-mail.
>
>If you/anyone else have questions, please ask.
>
>Michelle mom to Alex (19, partial trisomy 14 mosaic) and Molly (16)
>MichiganUSA
>
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>


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