scouts-l Mail Archive for April of 2000: Re: This is several days of consideration, my apologies its too long
Pam Glidden (pglidden@YAHOO.COM
Fri Apr 14 2000 - 15:13:06 CDT
--- EC92@AOL.COM began:
> Most of you know the stories I have of my son
and I edited out a whole bunch of heart rending
information that followed.
Wow, I'm impressed at your courage to lay your heart
so bare to all of us! Your story touched me. I often
hear such stories within my CHADD group. I've felt
similar pain when my kids were diagnosed with AD/HD.
I remember that first feeling of relief when they were
finally diagnosed. Ah, at last a name/reason for why
they are this way. Quickly followed by the despair
of, "Oh God, is it MY fault that this happened?" Then
pretty soon followed by the guilt feelings, for all of
the times I had told them things such as, "You CAN TOO
write and keep your letters within those lines. All
of the other kids your age do!" Or, "What do you mean
you've forgotten that you're supposed to be cleaning
your room? You've only been in here for 5 minutes!"
So I understand right where you and your wife are
I've seen this stress filled time, break up many
marriages. I've also seen it make many marriages much
stronger. I hope you and your honey are able to talk
and work through all of this.
I am not clear from your letter, how old Chris is?
Not that it makes a whole lot of difference. But
there are some things I want to share from your
First, I am proud of you for the stand you took with
Doctor #1. Too many parents simply accept such
diagnoses. I understand why they do, but am saddened
to see it. I'm glad that you cared enough to persist.
And even though you probably feel like it was wasted
time now, I'm glad to hear that you've already tried
the diet routine. Several times, I've heard some of
the biggest names (doctors) in AD/HD treatment talk
about diet to treat AD/HD and it is always the same.
Diet doesn't really work. It takes more than that.
So at least that is out of the way.
It sounds as if this current Dr. knows his/her stuff!
This sounds like a MUCH better evaluation, more in
line with what I've been told to expect. MY kids
thought it was weird, but I was relieved at how
thorough it was.
I'm curious which medication Chris was put on? Isn't
it amazing what a difference it makes? Like night and
day. When it works. Getting used to a new medication
can sometimes be very trying until the appropriate
dose/medication are found. But once the right one is
found, look out world! It's exciting to watch the
kids take off on a world of new experiences.
It's wonderful to hear that your insurance covered the
evaluation so well. I often hear of parents that pay
over $800 and more out of pocket when their insurance
doesn't cover these evaluations. OUCH!!
(Cough, cough) I've never known a male yet that DIDN'T
enjoy being observed by several females in a confined
space.) <VERY big grin> No insult intended. ;^ )
Tom, I will be honest and admit that I do not know
much about Fragile X Syndrome. But I DO know what
kind of stress this causes within a family. My heart
goes out to you and your family. I prescribe LOTS of
hugs and talking.
For the siblings that are jealous, I recommend a book
that we have in my local CHADD library. "My brother's
A World Class Pain, A Sibling's Guide to
ADHD/Hyperactivity" by Michael Gordon, Ph.D. It's
written for children, so might be a little childish
for your two older sons. It is however, easy to read
and makes some excellent points. And it has a happy
ending. It is also fairly inexpensive, under $15. If
you have trouble finding a copy, please let me know
and I can help.
It sounds to me as if your wife is going through the
normal grieving process. It isn't easy on either one
of you, nor on the kids. Would she be open to talking
to a counselor? Or even your son's doctor? It's
important that she talk about these feelings and not
bottle them up inside, even if she doesn't want to
As for her comment that Chris will never be an Eagle
Scout, well... you and I both know that's just not
true. Check out the BSA Advancement Policies and
Procedures Guidelines. There is a whole section on
Advancement for handicapped Scouts. He just might
take longer to get his Eagle! That's certainly okay.
And it's obvious from your post that you are NOT
prepared to give up on Chris.
Your wife's latching onto child #4 is again perfectly
normal. There is just something comforting about the
baby of the family. Especially when they are still
little. It's easy to pretend that everything will be
okay when holding a baby and smelling all of those
sweet baby scents. And this is all still relatively
new. It's going to take some time for her to deal
with this. I realize that you are dealing with a lot
too, but everyone has to handle it in their own way.
Tom...what is so scary about Chris learning like a
demon? Is it because this is new behavior? Or
because you've been told that he can't learn like
that? Or what? If it's because it is unlike him in
the past........I'm sure his medication has something
to do with it. Not that it makes him any smarter, but
it helps him to focus so that he "gets" it. Sounds
like he is a little sponge for all of this new
information. How exciting to watch this
transformation! AND Dad, you just did some bragging
on THIS son too, instead of that Eagle Scout son. LOL
Again, remember that Mom is coping with a lot of grief
and guilt right now. She probably CAN'T see these
changes that you are so excited about. I suggest that
every time you observe something positive, you draw
her attention to it. Keep at her like a leaky faucet,
eventually she will snap out of it.
It sounds like you have a pretty full plate right now.
IMHO, you are on the right track checking out all of
your resources and learning all you can about this new
Please DO keep us updated as you learn more. I would
be VERY interested. We can all learn from you as you
progress down this new information path. I am on my
way out the door to my little granddaughter's very
first musical program at school right now. When I
return I will search out several of my favorite
resources for such information and share them with
I have several very good resources.
In the meantime, what city in Ill. do you live in? I
will check and provide you with the local CHADD
Chapter's contact information. They might even have
some information on Fragile X Syndrome. At the very
least, they can help with information on
And they are champions at support. I wish I had the
knowledge of how to send you a song I have grown to
love. It is titled, "Don't Doubt The Dream, Or It
Will Never Come True". It was written and is sung by
a man that discovered after he was grown that he has
AD/HD. He is a Special Education teacher. I'll look
for the words to share with you.
Hang in there, God IS watching over you,
Green River District
Chief Seattle Council
South King County CHADD Chapter Coordinator
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