Six weeks ago I was wondering how the introduction of two new additions to the support team would be received by V, especially when it meant that she would have to give up leisure activities 3 nights in a row to work. Everyone wondered if she would be able to handle the adjustment to her schedule and to 2 new people all at once. Well, all of the hard work by our speech therapist over many months to make that hour of work once a week a positive experience for V laid the groundwork for a successful start with other specialists. We decided that we would keep the time of day for these sessions consistent and I think that helped. The focus on establishing a good rapport before making demands has helped. The result is success on an unexpected level. V has been receptive and cooperative with the new specialists, responding to them in the same way that she has learned to respond to our speech therapist. Not only that, the level of work she is doing with the speech therapist is accelerating since the addition of the new team members and she continues to surprise her team with what she can do. I feel so proud of her and her team, and so encouraged and hopeful about the progress that lies ahead.
The funny thing is, V is like me, in that the less demanded or expected of us by someone - the more we want to do. I guess we are both a bit contrary. The more we have given V respect for her wishes and feelings, the more she is praised for what she does, the more pressure that is removed from the situation, the better the performance we receive from her, happily and willingly.
I think there is a lesson here. She can't speak her feelings, type them or sign them, and there are many things she can't do for herself or understand about the world, but she has her opinions and feelings. She wants the opinions and feelings to be respected, just like the rest of us, in spite of her limitations. The more we honor small signals that she has had enough, needs a break, or feels frustrated, the less she needs to escalate to a physical response to get her point across. She is unlearning the need to fight for control over her life. We are un-learning the habit of forcing our will upon her. To impose a rigid schedule upon this person is to declare war upon her free will, and her response is to fight back. To control her would be to break her spirit and it hasn't been done yet, but is it something that we ever should have desired? Safety and health require some constraints upon the free choice we want to offer, but not that much of the time.
Exposure to the world she lives in, seven days a week, over 18 months, has increased V's tolerance for stimulating environments and has given her the opportunity to practice appropriate behavior in public situations to the point that she is appropriate most days in most situations. This is an ongoing process. Much less control in these public situations is necessary now than when we started taking her out every day.
The better she does, the less we attempt to control her, and the less we try to control her, the better she does.
I can't wait to see where we are a year from now with all the supports that are in place and the active role that V is taking in her own growth.
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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