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Maryland offers "The New Directions Waiver" as a means of self-directing state and federal Medicaid dollars for individuals who qualify for supports due to their disability.

This offers the disabled individual the opportunity to use those dollars to best meet their own unique needs. However, it comes with the responsibility to create a plan, a budget, and find your own resources to make the plan a reality.

No centralized source of resources exists. The purpose of this blog is to direct others to resources in our communities and to provide one example of a self-directed plan. (*Caution: The self-directed plan described at the beginning of this blog is for an individual with a 5/5 needs rating, the highest possible rating in Maryland, and therefore the highest budget possible. Most will have a lower rating and a lower budget to work with.) It is also to share firsthand knowledge of experiences that may assist others who self-direct services.

Comments are welcome. Please share your knowledge with others.

Saturday, February 20, 2010

Sleepless Nights

I wonder if there is a parent who has a child with an ASD who has not lost sleep at night because of the irregular sleep patterns of their child. I have certainly been through the problem and know of several other families who still struggle with sleepless nights. If you do an internet search for "regulating sleep in autistic children" you will find many links with lots of suggestions that may or may not solve your problem. One link suggests that giving melatonin to the individual with sleep problems might help. To read more about that copy and paste this url: http://sleepeducation.blogspot.com/2009/04/melatonin-improves-sleep-problems-in.html
As of June 2008, Baylor College of Medicine began conducting a clinical trial on this very problem. I have not found posted results and I do not know if the study has concluded yet. It may provide some answers. To read about it copy and paste this url: http://clinicaltrials.gov/ct2/show/NCT00691080
Someone who was clearly desperate for a good night's sleep has even invented a bed to safely contain someone who cannot be awake and unsupervised safely at night. More information about this is found at http://noahsworldllc.com/
Another site I found suggests using a weighted blanket or white noise. To read this article, copy and paste this url: http://autismaspergerssyndrome.suite101.com/article.cfm/autism_and_sleep_disorders
That same article talks about doing heavy work activities to help improve sleep, and provides a link to an explanation of what "Heavy Work Activities" are.
There are many ideas available that I never knew about or tried. I would be interested in feedback from anyone who tries any of these about the effectiveness.
Any shared stories of success might help another family, so please post comments about any solutions that you have found to this problem.
When I had this problem, we turned the doorknob around so that the lock faced the hall instead of the bedroom, and locked the door at night. For two years, V would knock on the door every 2 hours throughout the night, as a result of a medication change. We tried room darkening shades and the doctor recommendation of benadryl at bedtime, without success. Our behavior analyst suggested that we extinguish the behavior by ignoring the knocking instead of getting up to put V back to bed. She suggested moving V's bed to a location of the house that would make it easier to do this. We moved V's bed to her playroom in the basement and set up a baby monitor to listen for any trouble at night. Unless she was distressed, we ignored the knocking. We turned off the fuse providing power to her lights so that she could not brighten the room when she got up. The result was that she would go back to bed when no one responded and the knocking became less and less frequent until finally she was sleeping through the night again, and so were we. She likes having her bed in her playroom, where she can curl up and take a nap after her community outings if she is tired. The solution was successful and lasting for us.

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