scouts-l Mail Archive for May of 2000: Just to bring those of you interested up to date
Thu May 11 2000 - 14:45:49 CDT
Alright, everything additional I've learned, experienced, or been surprised
by regarding #3 son, Chris since I last wrote:
First, let me point out that the most interesting thing is how all the
percentages keep getting adapted, but the most current information tends to
say that we have an interesting situation around the world:
1 out of every 260 or so females apparently carry some portion of the Fragile
X chromosome. That doesn't guarantee she will pass it on or that her kids
will be going through this, but remember that "1 family in every x Packs" I
estimated? Narrow that guess downward.
And most do not know because the test takes weeks to provide results and is
not cheap, so if there has been no hint (or the family doctor has no idea of
the syndrome) of it there would be no testing done. Thank goodness the
genetics lab is interested in tracking it through the family so the tests -
after Chris' - are supposedly gratis to gather data.
You can have a quantity of this in you, and it apparently is judged over a
range of somewhere below 100 to ? and Chris is in a range around 300. It was
a month yesterday and we still do not have my wife's report, if that gives
you an estimate of the time involved.
Second, if you have a family with a special needs child in your unit look
carefully at what they appear to be able to handle at this time of year. It
is IEP time, every family gets to sit down with the educators, go over what
was achieved, and then try to estimate what to try for in the next year. So I
had been through a few of these already, to the point I sent my wife alone to
one or two before we knew all we know now, but I made sure I was at this one.
This is not an easy process, especially in some parts of the country where
"special needs" kids are just tossed in with everyone else and occassionally
mom and dad are called out to get the child because they are tossing a fit
for whatever reason and the teachers cannot calm them down.
In the last year I've been interviewed by social workers, Chris has been
observed by Psychologists, Occupational Therapists, and more, and we had what
I would call our first "major league" IEP - 10 professionals in various
fields all got to give their evaluations of Chris versus what my wife and I
know he can and cannot do. We found out some interesting things:
1. He shows a preference for using his left hand at school and cannot hold a
pencil correctly (so imagine their amazement when we pointed out he writes
only with his right hand and holds crayons the way you would hold a pencil at
2. That he is lacking in fine muscle tone. No arguement, for the most part,
but I would say a kid who can operate two games using a mouse on two
different computers at the same time has a greater amount of "fine muscle
tone" than they noticed.
3. That he has to follow the pattern he knows. Lord, how I know that one.
4. That they estimate him at 50 words, max. (our count last night was closer
to 100, but we hadn't planned on arguing that one since we may "understand"
things others wouldn't).
5. That the classroom teachers were ALSO using the word "scary" when they
found out after adding medication that THEY could understand what Chris was
saying. After almost 6 years, seeing sudden growth and development apparently
IS scary, and not just to me.
6. That of the two Psych people - one in the classroom every day and the
other pulling him out for evaluation and work - he has had days when he
couldn't do anything that would rate him as working at a level more than a
child of 2.5 years OR on a good day, getting the answers and solving things
they wouldn't expect until age 7. Where does that put you? We finally agreed
on 3 with a problem with communication that COULD, if breeched, bring him up
7. That he is the most helpful kid in his class. He has the routine down, he
will help the others get their coats off and on (even though he cannot zip
his own), he helps get them to their places, and if he is there for something
they call "circle time" he not only will get the kids to their places but he
watches and makes sure they go back if they try to get up and wander away.
8. For some unknown reason, animals love him. They have dogs come by each
month and the children love them, but the dogs loved Chris. They even have a
frog in the room that can spot Chris and jumps up the wall for him when it
Theres a lot more, but imagine having the sociologist report on all your
answers to all her questions reported in front of 10 different people and
being added to the very large file of paper each special needs child has in
their school. And thats a start. They even report how many times he missed
school and why.
We decided on placement, still through the public schools. They have a
special needs program where they find areas where those children are put in
with the other kids (In Chris' case he gets to go to the library, gym, and
playground, to start) and they still get special attention based on their
needs. Problem is, this breaks Chris' "pattern" so mom and dad will have to
gather him up every now and then and haul him over to the new school and the
playground there to try to get him used to the concept and let him identify
where he is when school starts.
And I realize, with all the paperwork they are gathering on each and every
kid in that school, that they didn't have the time (or the personal interest)
I did, but I had to tell them things I'd learned about Fragile X they did not
know. The OT didn't know that people with this have a lot of, well, call it
looseness, in their joints, so of course he is going to lack some fine muscle
skills. I'd been trying to convince my wife to ask for Folic Acid to be added
to Chris' medication since studies show children with the syndrome tend to do
better at communication skills when it is added. I'd do it myself, but it'd
probably take 5-10 kids vitamins a day to bring him up to the dosages
At which time I found out the one psychologist was a grad student when they
first started doing some studies on helping people with Fragile X and yes,
Folic Acid was one thing they were testing when she left the school, and it
just didn't come back to her until now, although suddenly we were a room
with* two* people with additional knowledge. At the end of the *3 hour*
evaluation, we had switched it from teachers and shrinks talking about me and
my kid to me telling them the things they need to know now that we know more
about whats wrong, and making notes in their books for the future.
This time of year is tense on special needs families and parents, its more
than some people can handle. Watch for them and let them off the hook for
treats or whatever they do for you if you see the need, please.
OH yeah, you see a dad in one of those families walking around with glazed
over eyes - he probably just got to the page with the cost of some of the
things that the school suggests purchasing to help the child. The one
computer starts at $5200, and it wasn;t the only suggestion.
Third, I received this message on the House of Representatives bill to
finance Fragile X research:
>It's official: H.R. 4365 passed the House of Representatives at 5pm, with
only 2 votes against!
>Thanks for all the letters you've written -- geez, they actually work! Next
stop... the Senate.
>Katie Clapp, President
>FRAXA Research Foundation
>45 Pleasant St., Newburyport, MA 01950
>phone: (978) 462-1866 fax: (978) 463-9985
If anyone would LIKE to tell their Senator they know a person with Fragile X
and they understand the need to support the bill coming from the house, I'd
appreciate it. No one is forcing you, though.
Finally, on the home front: We still get emotional and I still hear the
occassional speech about how my wife is sorry she caused this, etc., etc. And
I keep saying that no one is to blame and I'm not trying to assign any blame.
So imagine my surprise when I was told that virtually the same words came
from my mother-in-law last week - she's sorry she "gave this to Chris" - and
she will be tested if my wife's test comes out positive.
I believe everyone is coming around to the idea that this is something that
needs to be studied. It isn't really important to the child who is growing up
with the problem where it came from, it apparently makes some adults feel
better to "track it down", but for my opinion, if they can do something
research-wise with the data they get (and its a package about half the size
of my IEP paperwork) it will help somebody, sometime, and for that alone its
worth the trouble.
HOWEVER - Son #2 has taken this a lot more to heart than anyone would ever
believe. Certainly more than he let on at first. For about the third time in
recent history he has told us that he did something because, and I
paraphrase, "I'm stupid, I'm a retard, I've got this stupid Fragile X in me
and I can't think as well as you." Note that this child HAS NOT been tested
and we have no concept if he carries any of it at all.
A new project to study/learn/get involved in - the effects of this syndromeon
the entire rest of the family.....