[tri-med] Re: trisomy 13

In a message dated 11/22/05 11:14:34 PM, karens@xxxxxxxxxxxxxxxx writes:


> I had them given to Alex as an "at risk"
> child given his frequent hospitalisations.
> 

Dom is at risk because he is living in a group home and he takes minimal care 
of his personal hygiene. Of the original five guys there when he started, 
only three of them remain. It is a home that will take just about anyone, no 
matter how difficult their behaviors might be, so there is a kind of revolving 
door. I had no input into this placement and do have some concerns, but as an 
adult making his own decisions, it is up to Dom where he lives and he is ok 
with 
it. The guy let him have a dog and a cat, and I don't think there is another 
group home in the county that would do that. I still manage most of his medical 
with him, because he wants me to. But problem is, he lives about an hour away 
and I have had to become very conservative with how much I drive because of 
cost of gasoline. He will come up closer to home to see our family doc, but he 
won't go unless forced to see the psychiatrist that manages his meds until he 
gets the call that says they won't renew prescriptions until he has come in. I 
tried to get hi into a clinic in the north county, but since he lives south 
county, it is not allowed. I can't find a dentist anywhere in the county who 
will take Ali and Dom as patients, because they need general anesthesia for 
things like root canals, which they both need. Our faily dentist saw them up 
until 
about four years ago, but then he quit taking medicaid. We tried one dental 
practice and both kids were so traumatized, I just wouldn't take them back. We 
found a lady dentist that both kids liked because ofher gentle touch, but she 
stopped taking medicaid last summer. The dentist Philena and Chelsey go to 
will not take adults unless they have grown up in her practice. Funny thing is, 
Ali started with her when she was two, but "graduated" to the family dentist by 
the time she was five. Dom always did ok with the family dentist, but he has 
not really cared for his teeth since he was in middle school ( and I did it 
then) and is in desperate need, now. So now we are just stuck. I will be 
spending Christmas vacation lining up an adult neurologist for him and he 
hasn't seen 
an ortho for his back since the doc at children's dismissed him about two 
years ago. I hate making appointments for him because if he is interested in 
watching a tv show, he will cancel the door to door transport rather than go to 
a 
scheduled appointment. "I am an adult, I can do what I want." I have closed my 
heart in a box, because I feel as if he is walking around on borrowed time, 
and there is nothing I can do unless he allows me to. The group home is not a 
medical home. They just will take really hard to place indviduals who no one 
else will take, and if they have potential medical issues, too bad. I don't 
have 
any good ideas for anyone. 



Nan.....Mom to Dom; Trisomy 18 Mosaic & Bipolar Disorder. 22 years old
        and to Ali; Autism, ADHD, Tourette Syndrome. 22 years old

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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