On a bad day, it is easy to get hung up on the little things that don't work as well as I would like. I have to keep reminding myself that in the Big Picture, this adult program is working fabulously.
The supervising nurse visited on Saturday. She said V's blood pressure was 110/60. When the dental cleaning was done under general anesthesia 3 months ago, the nurse commented on how fast V's blood oxygen returned to normal. She was impressed. I see V's clothes fitting more loosely now than 6 months ago, in a good way, and I know that all of these things are the result of all the exercise that V is getting each day when she goes into the community. I see that she has a great appetite, and sleeps through the night. I see that she is smiling so much more now than a year ago and seems so much more peaceful. What more can a parent want than health and happiness for their child. I am thankful this week for the ability to see that V is well-fed with nutritious home-cooked food, well-cared for by dentists, nurses, therapists, doctors and support staff, and well-loved by her family. The behavior analyst commented on the dramatic improvement in V's quality of life over the past year during her most recent visit. V's support staff who have worked with her for the past 4 years commented recently on how much calmer and happier V is now than when she was in school. Ironically, I see more progress in skills and cooperation with therapists now than was ever reported within the structure of school.
Why is this the case? Why can our speech therapist get one hour of cooperative work with V now, when V would rarely work more than 15 minutes with a speech therapist at school? Is it because the work is now done in V's home and in the community? Is it because the current therapist has discovered what re-inforcers work or what activities V enjoys doing during sessions or just a good personality match? I don't know. Maybe the success is the result of all of these things working together.
What we know now, for sure, is that engaging in a power struggle with V does not work, but patience does. Demands do not work, but negotiation does. A rigid schedule does not work, but having flexibility does work. Pro-active anticipation of problems can prevent a lot of wasted time later spent resolving problems. When V is calm and happy, she learns and retains her knowledge and is able to show what she knows.
We have come a long way, but there is still lots of room for growth. I am thankful for the opportunity to be in the front row to witness these changes for the better and to be a part of them.
ABOUT
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.
For More Information
- Safety Harness for Use in Vehicles
- Autism and Sleep Disorders
- Solving Sleep Challenges with Autistic Children
- State by State list of resources by Autism Speaks
- Special Olympics Montgomery County MD
- Special Needs Trust Information
- Home delivery of incontinence products
- Clothing to prevent disrobing behavior
- Pathfinders for Autism; service provider listings
- Montgomery County Collaboration Council
- Sensory Integration Disorder
- The Ivymount School
- Child Find
- Adapted Aquatics
- The Kennedy Krieger Institute
- Circle of Hope Therapeutic Riding
- Maryland New Directions Waiver
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