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Avatar universal

Won't get out of bed - 18 year old daughter down syndrome

Hi, Our daughter has occasionally had trouble getting out of bed in the past, but about 3 months into this school year she has taken it to a new level.  She goes to a public high school mostly in special education classes 3 days a week and goes to a STW (school to work) program for people with special needs 2 days a week.  She is relatively high functioning and does fairly well at both, even getting employee of the month at the STW program in Sept.

However, the last couple months or so she is flat out refusing to get out of bed to go to STW or school at least 2 or 3 days per week.  My wife has the patience of 10 people and is very nice and gentle in prompting our daughter to get out of bed and even she has been losing her patience as she has a job and needs to get to work as close to on time as possible (she has a very understanding employer).  When she fails I (work from home) get to try and get our daughter out of bed and I am not a patient person and have found out, as I have seen others state in this forum, any type of loud prompting, turning lights on, removing covers, opening blinds on window, loud singing etc. only seems to make people with Down Syndrome more adamant in their refusal to cooperate.

We have taken her to the Dr. and had bloodwork done to check for possible anemia or other similar type issues and nothing was found except for a low Vitamin D level.  We have her taking supplements now, but no change in her getting out of bed behavior.  She is getting at least 8-10 hours of sleep, so we don't think that is an issue.

We are at our wits end and have tried everything we can think of, many of which I have not gone into here.

Has anyone else had a similar problem??  or anyone with any suggestions ???

PLEASE HELP - we are open to any and all advice - thank you.
3 Responses
Avatar universal
Have you talked to her teacher
or counselor, and whoever supervised her at the STW program?  Has she changed jobs or has there been staff changes?  Something may be going on at school or the STW program. I think something may have changed or something is happening that she doesn't like. I have worked with people with Down Syndrome for years and know sometimes they are stubborn. A rewards system where she earn points or stickers toward something might work. This night sound childish but we do a behavior plan with a reward system for people with difficult behaviors where I work. Consistency is important with a rewards system. Lastly did the doctor check thyroid levels?  Low thyroid levels are fairly common in people with Down Syndrome. Best Wishes
Avatar universal
Thank you Soooo.... much for the reply.  I am actually dealing with trying to get her out of bed right now.  Typically if we have to be somewhere it is a minumum 2 hour process now to get her out of bed and ready to go.

We did have her thyroid levels checked, visited the Down Syndrome Center at Pgh Childrens Hospital, tried a reward system, had a sleep study, talked to her teachers/job coaches etc.  The reward system that we have use in the past when she was younger did work temporarily, but now offers little incentive.  I agree that something definetly happened, but either no one we have talked to knows or no one wants to fess up to it or be a rat.  A real shame when you are dealing with juvenile adults when trying to do the best for your child.  With our school district if something is being swept under the rug, it would not surprise me in the least.  The fellow employees let a pervert roam their halls for years masqueradfing as a teacher and no one ever reported him.  It took some brave teenage girls to finally step up and put him in prison where he belongs.  Thanks again for the advice - it seems like you have a lot of experience and know exactly what we are dealing with.
Avatar universal
Thank you Soooo.... much for the reply.  I am actually dealing with trying to get her out of bed right now.  Typically if we have to be somewhere it is a minumum 2 hour process now to get her out of bed and ready to go.

We did have her thyroid levels checked, visited the Down Syndrome Center at Pgh Childrens Hospital, tried a reward system, had a sleep study, talked to her teachers/job coaches etc.  The reward system that we have use in the past when she was younger did work temporarily, but now offers little incentive.  I agree that something definetly happened, but either no one we have talked to knows or no one wants to fess up to it or be a rat.  A real shame when you are dealing with juvenile adults when trying to do the best for your child.  With our school district if something is being swept under the rug, it would not surprise me in the least.  The fellow employees let a pervert roam their halls for years masqueradfing as a teacher and no one ever reported him.  It took some brave teenage girls to finally step up and put him in prison where he belongs.  Thanks again for the advice - it seems like you have a lot of experience and know exactly what we are dealing with.
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