As published in CLSF News, Vol 10 Issue 1, January 2001
Circle of FriendsJames & Kristina Smith
5447 Pinecrest St
Hope Mills, NC 28348-2374
910-426-0674
12/15/00
Dear Mary,
Anthony is eight now and is in second grade. He attends half a day in a
special class and a half a day in a regular second grade class with an
assistant. He is doing really well his social skills. He is a very loving, warm,
caring child. He has some difficulties with his behavior and attention, but
nothing drastic—just gets very frustrated with his work at times.
Transitioning gets him really out of whack but, his wonderful assistant he has
had for two years is very patient but firm. He was in his first program at
school. The second grade classes did a
Christmas program and he was the only special child. He was in the chorus. We
were so proud he new all the songs and he did very well - it was amazing. I
think also what was so wonderful was he was proud of himself - he stood and sang
and just smiled you could hear him singing over the other children. He was so
excited.
Timothy is also doing very well. He is 6 and in kindergarten for his second
year. He goes half the day in a regular class and half a day in a special class
also. He has had such wonderful improvement this year with his speech. Other
adults and children can understand what Timothy is saying and that makes him so
happy.
We look forward to your newsletters and truly appreciate all your hard work.
We also did not realize you had parent contacts we would love to help you and
other family's by adding our names to the list.
Thank you again for everything.
Kristina Smith
Susan Malak
3477 E. Bottsford Ave
Cudahy, WI 53110
414-481-1303
Hi Mary,
My son Michael has cycles out of control mood swings. What I mean by that is for 3-4 months he has pretty good control of his behavior then there will be spells of very aggressive behavior for weeks. He's in a spell now. One way thinking his way or no way. (age 7yr. will be 8 in Feb. 2001) He's trying hard to be more independent (which is good), but if it doesn't go his way he gets violent with words and physically. Hitting, biting, pushing ...etc. He also says the opposite of everything that is asked of him to do, or even in average conversations. I've been told by professionals and staff at his school that he needs to be on meds in the past year and a half. I didn't want meds for him. I thought that he'd learn to control his outbursts from help of me and the school staff. Actually he knows many rights from wrong. And is sincerely sorry after he calms down. I'm hung up on putting such a young child on meds for behavior problems. I'm not as undecided as I was in the past, I'm starting to lean towards a try at meds, but this upsets much. I'd like to hear from you and others that have toiled with this decision. If you or others have questions please reply. I think it was a good idea on your part to let the family that visit your website to see your efforts and need for support. Thank you much. You'll see more donations from my family.
Sue Malak
Tough call. I really was against putting my younger son, Tristan, on Ritalin but after I looked into it and got recommendations from medical professionals that I trusted, I grudgingly went ahead. It has made such a difference in his life, his school work, his social behavior. It was the right thing to do.
Is meds the right thing to do for Michael? I don't know if you'll know that until you try it. If you don't like the results, you can always stop the meds.—MCH
Fiona Barnes
10 Carrick Road
Bedford, Bedfordshire MK41 0PU
Great Britain
12/19/2000
Phillip Is a lively teenager, loves music, mainly from the 1940/50/60 and
classical. Still cannot master buttons, open ended zips and shoelaces. Has
trouble telling if his cloths are the right way out or not. Pencil control more
or less none, exec sent and reading very difficult.
Loves books and school, loves swimming. Speech has problems with any word that
has the letter F, or V in them. Tends to come out sounding like B. so Van would
be Ban for e.g..
Still after nearly fifteen years little is known. I do have a question however.
Is the difficulty that both my son and now my grandson had as a small child in
chewing their food in anyway connected with this syndrome. It is just the
professionals dealing with my grandson seem to think it does not. But I seem to
have remembered reading or being told at sometime in the past that it does. can
you please clear this one up for me.
A couple of things come to mind. Does Phillip have any problems
with the way his mouth is constructed, how his teeth fit together? In other
words, is there any mechanical reason that might cause him difficulty in
chewing? Since you checked “Malocclusion" in your Family Questionnaire, I
suspect this could be part of the problem. Does Phillip have hypotonia (poor
muscle tone)? That could also be a factor. If he has poor fine motor control,
that could extend to being able to manipulate his tongue, which is after all a
muscle. That would affect
his ability to manipulate food as well as articulate.—MCH
Carol Garrett-Blais
1790 Merced Ave
Merced, CA 95340
209-722-8895
Charlie was excited to see his picture in the newsletter!! He has grown so
much this past year. He will be graduating from 8th grade in May and will go to
high school just down the street from where we live. He is so anxious to go, he
wants to go now and not finish middle school!! I'm not sure if I'm ready for him
to go to high school, but his current teacher says he is ready. He will have his
first male teacher when he enters high school, that will be really different for
him as he likes all the attention he gets from the female teachers!! He is
beginning to recognize words, but cannot read yet, but we're working on it. He
can trace his name and tries to write it free hand, but not there yet. He plays
on the computer a lot and still loves to listen to all types of music. He keeps
himself entertained most of the time, but does want my attention quite often. He
competed in our local Special Olympics this past summer and won first place in
all three events that he entered; softball throw, tennis ball throw and a
wheelchair race. My husband, Charlie's step-father, is really involved in the
Special Olympics, he coaches the basketball and baseball teams and helps out
with the track and field events. Charlie really loves having him there as his
coach!!
Charlie has remained very healthy this past year and during our unusually cold winter we are having. He is still taking Gabitril (Tigabine) for his drop attack seizures. He seems to go through phases of having several drop attacks weekly and then it will subside to only a few per week. His neurologist wants to keep him on the Gabitril as it does seem to help. We are very fortunate that he has stayed healthy. He is in his wheelchair full time at school. But since our place is small, he scoots around or crawls to get where he wants to go. Not much stops him from getting around!! Although he won't try to walk without assistance because of his fear of falling. Thanks for all you do with the useful and informative info in the newsletter. I look forward to reading it as soon as it arrives!!
Happy Holidays!!
Carol Garrett-Blais
Eva Shamp
5714 Haley Road
Meridian, MS 39305
601-693-2436
evash1@aol.com
Mary,
After receiving the latest newsletter with the breakdown of costs to distribute the info to us, I had to send something to help out. I’m always so glad to receive the news and updates on how everyone is doing. You always have something in there that helps us.
Van is doing very well. He’s a senior this year and still in a work training
program for two hours every day. The community job placement program here in
Meridian has high hopes of placing him in a regular job in the community. He is
ready to graduate and get a job, but I do have my doubts about how it will all
work out. We’ll just have to wait and see how he does. He goes back to the
dermatologist and oncologist in February for checkups. So far he has had no more
recurrences of melanoma, but has had several kidney infections and they may put
him on a daily preventative dose of antibiotic to keep his kidneys healthy. We’ve
increased all medications (zoloft and ritalin) to help keep him calm and
cooperative. He tends to be very defiant with everyone. But a lot of that may be
because he understands enough to know that he’s 19 and should not be treated
like a child still. Yet in so many ways we have to treat him like one - he has
an attendant that comes to help him with his bath and keeping up his room. Any
time the family has to go somewhere outdoors, like ball games for his brother,
he has respite care to stay with him because he does not want to go. He does not
like us telling him what to do or when to do it, but we have to. I appreciate
the info about the new toothbrushes—I’m ordering some today.
Thanks for all you do, Mary—I’m sure your plate is very full already without
the work of the foundation to do!!
Eva Shamp.
You have no idea…<grin>
MCH