scouts-l Mail Archive for April of 2000: Re: Special needs
Tue Apr 18 2000 - 15:50:15 CDT
In a message dated 4/18/2000 2:25:55 PM, firstname.lastname@example.org writes:
>Tom, for the sake of us that don't know, what is Fragile X?
In simplest terms I can use:
On the 'X' chromosome there are two long arms and two short arms. On the long
arm you will find a space or break in the genetic code near the end. At that
point I'm re-learning what has happened in genetics since 1976 and cannot
explain it better.
That one out of whack thing means anything from absolutely nothing to
It is worst in males, since they only have one X chromosome and one Y,
whereas females seem to be able to sometimes get around the problem because
they have two X chromosomes. The one that is "normal" seems to be able to
compensate for the one that is "damaged".
It can cause anything from nothing (mainly females -and I'm going to guess
some lucky males) to learning disabled to retardation.
Children with the syndrome are often easy to pick out, at least to the
geneticist who saw my wife yesterday and picked the ones we already suspected
with the gene from her family photos and confirmed what I could see. Possible
physical characteristics include a long face, pronounced forehead, ears,
and/or lips, and other things we won't get into right now. Other things I'm
learning from comparing notes with other parents is a shorter attention span,
often grab things like glasses (these guys that make the kind you can bend
could use mine as an ad), sometimes will hit or pinch or pull hair to get
attention (part of efforts to communicate, apparently, since they tend to
learn to talk slowly and many learn to sign first).
And for the most part they will be strong. My five year old can brace himself
and push me over using only his legs. He weighs 75 lbs. and his leg muscles
feel like rock, I'm over 200 (Oh no, the health police will be after me!
Gotta lose weight you overweight Scout Leader....).
But if my Chris is any indication, they are not unable to learn, and should
do well in a structured environment with rules, because they like things that
are structured. Something like BSA should be a godsend for a child like this,
able to socialize, able to imitate (Chris learns faster by imitating his
brothers than by "teaching", for example) and still able to follow guidelines
It is an emotional situation for a family, though. Kids don't know or are
embarassed by their brothers or rebel completely to avoid them. They are
afraid to bring friends home. Parents don't know what to do. Other adults
look at the parents as if they are doing something wrong when the fraggle
youth screams, cries, or throws a fit (The people in the Indianapolis
Speedway museum will cring every time they see me, all older volunteers who
my wife told me were constantly saying "Why can't that man control his
kid?"). I do a good job ignoring people, but my wife feels every eye is
watching everything she does when Chris is with her.
Once the youth gets older and learns to communicate better, the tantrums seem
to stop. Medications are being identified that help increase learning speed.
I saw in older information that this is carried by about 1 in 1000, newer
publications put that at 1 in 600. If we want to generalize it, that means
for a 100 member Pack you've already got (approx.) 300 people, for every
couple of Packs you'll probably find a family with this occurring in the
home. That means you'll have as much opportunity to see it happen in a unit
as you need to consider. Whether its the Scout or the family, its gonna be
something that you will need to know about.
Hopefully as Chris and his mother and I get through this and we share it
you'll get a feel for what to expect and be able to decide what to do for
your unit. And right now, if your district (or preferably smaller area)
doesn't have a special needs unit to take these youth if your units won't,
you need to do all you can to encourage and help them form one.
I'm sorry, this took a lot more out of me than I thought it would. I'll get
better details and send them on as things happen. Anyone wants to know the
basics can use Metacrawler search engine for "Fragile X Syndrome" and one of
the things that will come up does say "an explanation in layman's terms",
which is a good place to start. I'd list websites, but I have over 25 here
(several from Australia - I've yet to determine if its a health interest
there or if its just part of the way the Aussie's act. LOL, had to get our
friend down under sometime) and figured you don't need me eating up even more