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jmcc 09-03-2013 08:28 AM

Adult Down Syndrome
I am hoping to find other parent's that also have an adult with Down Syndrome. I am finding that there is several subjects for baby's etc. but very little groups that focus on "adults with Down Syndrome". :angel:

maryfran33 09-24-2013 11:03 AM

Re: Adult Down Syndrome
I, too, would be interested in sharing with other parents. My daughter will be 38 in November. She has been on thyroid medication for hypothyroidism for about 25 years. Recently, though, her levels are "out of whack". TSH is slowly creeping up; but her free T3 level is too high. Doesn't make sense. Can't help but wonder whether perimenopause is affecting her thyroid levels.

hmahappy 02-06-2014 01:22 PM

Re: Adult Down Syndrome
My older sister has Down Syndrome. She is 38, and is on citalopram (antidepressant), abilify, and lamictal. She also was recently diagnosed with hypothyroidism. I grew up with her so I can give you the sibling's point of view. :)

kanded 02-08-2014 10:29 AM

Re: Adult Down Syndrome
Maryfran: I've heard that soy is really bad for the thyroid, so maybe it would be a good idea also to stay away from soy products- and there is soy in many products that we don't even realize, examine the ingredient labels carefully. Sometimes its hidden: anything that has soy in the name, TVP, TSF TSP, HVP, hydrolized plant protein, anything that has artificial flavorings.
Although its possible that menopause could aggravate the problem with her thyroid. When one function of your body begins to have problems, that often causes conditions we already have to worsen. So then often a more aggressive approach to nutrition has to be taken.

sunshine61 11-06-2014 04:18 PM

Re: Adult Down Syndrome
I have a 26 year old with downs. I know what you mean, alot of baby info.

Clyde1 11-06-2014 08:24 PM

Re: Adult Down Syndrome
[QUOTE=jmcc;5219006]I am hoping to find other parent's that also have an adult with Down Syndrome. I am finding that there is several subjects for baby's etc. but very little groups that focus on "adults with Down Syndrome". :angel:[/QUOTE]

Hello, My daughter is 47 and has Down syndrome.

sgtbulldog 11-07-2014 12:01 AM

Re: Adult Down Syndrome
I could use some help. My step son is 21 and before this summer he and I were so close. We went everywhere just had a great time goofing around together. Then we went camping like we have done before and things were great when all of a sudden it was like a light switch he attacked me very violently and to this day we don't know what set him off. Needless to say he is hitting and pushing you name it to me all the time. I don't go near him ever. Now he has turned his aggression towards his mother who is the only one he was letting care for him. He refuses to leave his room and he throws everything including his food at his mother now. We are afraid he will turn on the 3 little girls we have here and hurt them. Before I arrived in their lives he was aggressive towards the twin girls but then he kind of stopped at least it wasn't as bad because I stayed between them and would take him away just the two of us and goof together. We don't know what's going on and my poor wife is so heart broken.

MomOfDownsAutis 11-09-2014 10:22 AM

Re: Adult Down Syndrome
sgtbulldog- Bless you for being patient and loving with your stepson I know it is even more difficult when it's not your own child. My downs/autistic son (Tyler) will be 22 in Feb. and in the past had gotten very aggressive with me (mom) and some of teachers/aides a couple of years ago and it was scary. Violent outbursts would seem to come out of nowhere and scared the #@&% out of me. I think he was going thru "hormonal changes" (I hear at that age most boys do seem to get aggressive around age 21, even normal boys) and especially if they are non-verbal (my son is) they do not know how to express themselves. My hubby- Tyler's stepfather (John) and I learned to recognize the warning signs before an outburst and found that if we backed up (don't overcrowd him- stay at arms length or more) and ignored (if whatever he's doing is not hurting anyone, including himself) or distracted him, it would pass.
What really helped was almost a years worth of "in home behavior modification training" from AST (Autism Spectrum Therapies) that we received through our Regional Center Worker and we still try to use what we learned from that training. Contact your Regional Center Worker to request help- and make sure they understand how dangerous your situation is. Make sure you tell them this is urgent and that you need help NOW. It does seem like an inconvenience when someone comes into your house to tell you what to do, or not do- but it is worth it. And it should be covered through the Regional Center- with no $ out of your pocket.
Medication is also necessary for Tyler. We tried going without it and have tried just about everything out there, but there are side effects that Tyler is effected with- trouble swallowing, uncontrollable eye movement, both that Benadryl with remedy (for the time being). Right now Tyler is on Remeron but had been on Zyprexa for years and before that Abilify. It does not help with the "vocal" behaviors but it helps him to sleep (he's always had problems sleeping which means I don't get to sleep either) but so far this new med is helping with sleep and aggression. Also- have his doctor do a complete physical exam to make sure there are no hidden issues that may be making him act out. Lately Tyler had a severe ear infection that he couldn't express to me= bad behavior- until we figured it out.
We also noticed Tyler reacts to our emotions- If we're talking or arguing about something, he gets upset too, so we try not to discuss problems around him. Our household is pretty mellow- but there are times especially with lack of sleep that the tension in the air is high and Tyler can sense it and reacts. So I play music (I use to be a heavy Alt/Rock person but I've mellowed out and listen to a lot of Christian Alt/Rock now and it seems to help Tyler) most of the time and there are some songs that Tyler just loves and makes him very happy. We also try not to watch violent movies around him.

I hope this info helps- we pray for your family's strength, patience, well-being and lots of Love. Please feel free to ask questions.

sgtbulldog 11-09-2014 10:52 AM

Re: Adult Down Syndrome
Thank you the info is helpful. Living in Wyoming we don't have a lot of resources to draw from. We know we need to get Cruz to a Dr. It's just with him fighting and it seem we have to find a new Dr. all the time as Dr. Don't hang around here for long and that just adds to the frustration. Cruz loves music and we play the for him but when he acts out there are no warning signs any more. We use to be able to catch him before he acted out but now he's surprising us. It's been a learning experience for me but one I have enjoyed. I miss my little buddy and hope he will one day he will let me back in his life like before. Thank you again.

MomOfDownsAutis 11-09-2014 10:54 AM

Re: Adult Down Syndrome
I forgot to add-
Reward the "Good Behaviors" with lots of praise, sometimes treats- to encourage more good behaviors. Be really enthusiastic about his good behavior like- "I really love how you were being gentle, it makes me very happy"- etc. He really needs to be acknowledged when he's doing good. I have a tendency of getting too caught up in things and have to remind myself to interact with him more, even if I'm just trying to figure things out. He likes to be included in decisions.

Tyler loves "The Imagination Movers" and The Wiggles- even though he is almost 22. He loves the music and dancing and chooses them on You Tube so I have a playlist set up for him.

MomOfDownsAutis 11-09-2014 11:26 AM

Re: Adult Down Syndrome
Wow- After searching for Disability services in Wyoming, I see what you mean. There must be something. Does he receive SSI?
We're in California and are lucky to have easy access to resources. I'll check with my Regional Center Worker to see if she knows of resources for you in Wyoming.

Clyde1 11-09-2014 01:25 PM

Re: Adult Down Syndrome
There is a book, "Mental Wellness in Adults With Down Syndrome," by Dr. Chicoine. Dr. Chicoine began and still runs the oldest adult down syndrome health clinic in the U.S., and possibly the world. Unfortunately it is just outside of Chicago, and due to overwhelmig response, they only see residents of Ill.. The book has an invaluable amount of information and can be ordered from ******. It describes common issues to be aware of that impact persons with DS. There is new information since the book was first published, but it still is a wealth of information. My daughter began a decline in early 2008, and we just received a diagnosis last year at Vanderbilt. Her story is on the Down Syndrome and Hashimotos Encephalopathy discussion. Accolades to all of you wonderful caregivers, particularly to the lady who is concerned about her stepson.

sgtbulldog 11-09-2014 04:19 PM

Re: Adult Down Syndrome
He does get SSI not much and he is on the Wyoming waiver that gives out money to help but that money goes towards caregiving due to both of us having to work.He does well with his sitter, for now, but we just want to make him happy and it breaks my heart to see him this way.

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