From: MahlonGreene&SherryDimmick <greene@...>
Subject: Re: [11q_disorders] behavior problems
To: 11q_disorders@yahoogroups.com
Date: Monday, September 1, 2008, 11:51 PM

Hi Peggy -

Thank you for sharing so much about Grace. We live in Alaska - and are on a Medicaid waiver waitlist with approximately 1000 other people in the State  with developmental disabilities. The State gives 100 people/year a waiver, based on their determination of current or pending crisis. We are given a survey yearly to determine how many points we have to qualify for the next year's distribution. Since this is Erik's last year in school, it should give him an edge - but on the other hand I'm not one to imply that he is going to be  homeless or that his health and welfare is going to be compromised if  he doesn't get a waiver. He has a grant that provides 20 hours/week respite/day hab/residential support that we are very grateful for and for the first time in years, we have enough staff to use the 20 hours and they provide Erik with lots of variety of activities in the community. His staff truly enjoy him and he is always very pleasant and appropriate with them. 

This is an interesting discussion on behaviors. It's obviously a huge issue for many. We know lots of DD families and the behaviors we see with our 11q kiddos are not unique! There do not seem to be any experts,  at least in my area - the tendency is to up doses and add drugs. For that reason, I haven't pursued therapy - it's strictly meds management with no behavior management plans.

It has been a long weekend, and I am looking forward to Erik's smiling face from the bus window as  he leaves for school in the morning!

Sherry

On Aug 31, 2008, at 6:16 PM, Peggy St.Clair wrote:

I don't know where you live but contact your developemental disabilites organizton and see what programs they have for adults. Grace goes to a center for the adults  during the day then I have medicaid waiver that pays for staff to help 8 hours a day and weekends. Never feel bad either if you look into a group home and find this is a great place for him. No one will think you a bad parent. Remember we aren't getting any younger and we have even made out plans in case soemthign happens to us who takes care of her. We had Grace live in her own home  for a little over a yr. Waiver paid for 24 hour staff. But finding good staff was such a headache because no one wanted to deal with her behaviors and she also is in a wheelchair and needs diapers and such. So she is home and then I am sure she gets fed etc. Our staff that is paid is family members.  If you would like help in finding help with Eric as an adult let me know where you live  and I will see what I can find for you.I loved not being tied down all the time when she didn't live at home.But I know this can't be so we do the best we can.Right now she has some major health  issues I deal with since I am a nurse and it keeps her out of the hospital . But I have worked as a case cordinator for the state of Arkansas for the disabled so I can usually find a main source that will direct in the right direction. Have  a wonderful holiday. We are at home and we just finished re decoratoing Grace room Peggy --- On Sun, 8/31/08, MahlonGreene&SherryDimmick<greene@mtaonline. net> wrote: From: MahlonGreene&SherryDimmick <greene@mtaonline. net> Subject: Re: [11q_disorders] behavior problems To: 11q_disorders@ yahoogroups. com Date: Sunday, August 31, 2008, 1:55 PM Hi Linzee - We had success with methylphenidate (generic Ritalin) for many years that helped with both behaviors and attention. When Erik started getting headaches 3-4 year ago, we changed to Adderall XR 15mg - a drug that had NOT been successful when he was about 12 years old - and he is doing pretty good with it  now. Erik is 21.  I wish there were programs that could help families with developmentally disabled children enjoy each other socially and appropriately. Erik does great at school and with providers that relieve me occasionally. I won't even take him to social events or shopping anymore because of the way he acts - and at 132 pounds he's too big to herd out the door anymore. So - the Adderall takes the edge off a little bit at home but not enough to do anything else. As I write this I see that the Adderall is not a fix all, just a bandaid and perhaps I need to be more aggressive in finding some help! Sherry Erik's mom On Aug 30, 2008, at 1:07 PM, linzee_carroll wrote: I need some suggestions for controlling behaviors in 11q kids. Brayden  is just getting very hard to control. When he is at home, he just seems  to be frustrated the whole time and he takes it out on his little  sister--sitting on her, pinching her, biting her, etc. Zach is also  having some issues, but his aren't all the time like Brayden's seem to  be. Neither of them have problems at school, but I think that Brayden  does better there because he always has someone who can give him 100%  attention. We have tried several ADHD medications with no help with  his attention, but I have heard that sometimes they can help with both  attention and behaviors. The ones he has tried have done nothing for  either attention or behavior. If anyone has had any successes, please  let me know. If I let him out of my sight these days, someone gets  hurt.