From: EC92@AOL.COM
Date: Wed May 31 2000 - 11:03:42 CDT
First of all, my wife got her results on Friday, and we were able to tease
about it a little at first (my opinion -- if #2 son is sensitive about it and
hasn't been tested yet, better to turn it into a "family fun thing", an
inside joke, and remove the stigma -- wife does not agree) since she is a
carrier of Fragile X Syndrome, as everyone who can guess genetics figured out
up front.
Of course now everything in her and Chris' life that matches the syndrome
gets pointed out to us, by everyone. An aunt who has a son in a wheelchair
(Playing Little League, slid into base, finished the game, went numb later in
the day, never concluded what was the cause) said to watch that one, everyone
who knows the slightest little bit about what you have occurring in your life
will try to point out what they think they see and make it stand out like a
sore thumb.
Now comes the fun part: her mother called Tuesday to see if she had her
results, and apparently tore into my wife, again. That it can't be her, that
it must be me, that grandma won't get tested, etc., etc.
I came home to a VERY TOUCHY home in a tough situation, after a day of work
that ran overtime, with #2 son off somewhere with the video camera doing a
school project that had everyone even MORE upset. Even better, she waited
until all the kids had eaten and left the kitchen to tell me what was going
on.
I've written before how this can affect a family, and I had assumed after it
passed over the first time it was worked out. We skipped taking the kids to
her mother's for Easter after the first event, on my assumption that Chris
didn't need to sit under the microscope and my wife didn't need the
interrogation she would have received. I'm in the same spot again whenever
the next time we're invited over is.
Even worse, the kids love to play in the basement at her parents house and I
usually get dragged down to watch over them all while she sits upstairs and
gossips and talks, making her a sitting target. She didn't like it when I
said "no" to Easter until I tried to explain, and then later explained the
part she wouldn't let me say the first time, and a little more here and there
until three weeks after Easter she understood.
In the meantime we need to warn any possible relative that can still have
kids that this is a *possible* situation they need to tell their doctors
about. Tests need to be done, prenatal with an amniocentesis or at birth with
cord blood. Given what is occurring around us, I assume the only thing to do
is to warn everyone so their doctors know about and check for this situation
in any children. People need to be able to make informed decisions in their
lives and without this information they would not be able to.
Then you look back at your own family and wonder *why you should put anyone
who might not have it through the same experiences?*....
My only other option: get everyone tested around her mother and by process of
elimination bring it back around to her mom so we know who we need to warn
and narrow down the field.
Which I believe is the only option to take at this time. We're at a point
where she, technically, could have received it from either her mother or her
father (although family history points a different direction) so we can
justify testing her dad, her sister, her brother, and finding out where
things stand. I know her sister and her father said they would be tested.
NOW TO GET AWAY FROM FAMILY:
Chris is, I'm estimating, at slightly over 100 words, and all that occurred
since they started a med for the hyperactivity. He loves his dog, but could
never say the name "Tobey" and had shortened it to "T" (and the danged dog
understood before the rest of us and answers to "T" better than his name
now), but when I brought in the dog last night Chris was at the back window
and I heard him say "Tobe" when the dog came running around the shed.
Two things we've seen become obvious. If you ASK Chris to do something, its
almost as if his brain shuts down. The one psych at school said this is often
the situation, when asked for a specific task or word Fragile X kids
(Fraggles) will stall and almost be like a motor trying to start up again --
you can see them thinking and trying to do what you asked, but it seems an
almost insurmountable task. Once doing what you asked becomes a part of a
routine, however, actions and words happen at lightning speed and you have to
listen carefully to find out what the child is saying.
Even scarier than everyone pointing out the things they *think* they see in
my family is the number of kids I've known over the years who acted in
precisely the same way, and wondering what happened to some of them.
Chris' school had another trip planned, one to take a train ride, and we had
not even thought of trying to take Chris on the local trains. They loaded up
their morning class, got on, rode to a different station where they were met
by the busses for the afternoon class, traded kids, and headed back to
school. Which confirmed another thing about Chris:
He has NO concept of time. The ideas "I'll do it" and "I'll do it in a minute"
are the same thing to him, "DO IT NOW". So as long as there are not long
time delays he does very well. Waiting for the train was bad. RIDING the
train was a different story. Apparently also a Fraggle concept, since it
appears to be a major problem for a number of the families I "meet" daily the
way I meet all of you.
Places like Disney have even adjusted to it (so if you head to Disney World
and see someone do this you understand) and have a 'disABLED' program where
the entire family will show up with a note from the doctor about something
like this, will get a pass at an office, and they show the pass to the person
at the end of every line and they'll get moved to the front and placed on the
next trip for that ride. You might see it happen and be upset over your 45
minute wait while those others zipped through, but your other option would be
to have a child screaming and hollering and creating havoc near you in ways
your family never experienced, in which case you'd be standing around
muttering under your breath about someone like me and "why can't you control
that kid?" Experienced it with the volunteers at Indianapolis Raceway when we
were there for the end of the year - my wife said every adult in the museum
was complaining about me and the way Chris was acting, however he was more
than easy to handle when we were the first in the gates and he didn't have to
wait for anything (although, as always, he was just a little loud....).
Last thing about Fraggles and Chris. One descriptive thing about them is that
they have "loose" joints. Which I guess is why the teachers feel Chris can do
anything and never get hurt. I've sen him do things like flip a summersault
while I'm holding his hands and never let go, not even bothered by his arms
and the way they are twisted after he flips. Last weekend we got a picnic
table and he was on it - literally on top of it - within minutes. I and the
school are at the conclusion that as long as we protect his head, he had more
than enough flex to survive most everything else.
Tom Petrik
