For years, bath time has been problematic. First, the transition into the bathroom to take a bath was tricky. If V is involved in an enjoyable activity, she doesn't want to stop to go take a bath. So, first, a natural break in the activity at hand needs to occur to increase the chance of a smooth transition. If she is watching t.v., it can be the end of a show. If she is coloring, it can be the point that she puts down the crayons. Second, she becomes obsessed with running the water, as hot as it will go, far beyond the point that you would want to send water pouring down the drain to avoid a spill over onto the floor, and so hot that her skin turns bright red. What is a painful temperature to me, is not painful to her. This obsession with flowing hot water has led to many a conflict in the tub. V turns the faucet all the way to the hottest level, and I (or the caregiver) turn it back to a cooler temperature or I turn it off because the tub is full and the bath is over. Then, V turns it back on, again, as hot as it will go. Back and forth it goes, until she becomes frustrated and agitated, yelling and splashing water onto the floor and whoever is present. This is not fun for anyone. When the obsession begins, no cajoling, prompting, or demanding that the water stay off will stop it. No tempting treats will consistently overwhelm the desire for the flowing hot water. No behavior management strategy has worked to solve this dilemma. So, we have resorted to a home modification solution.
A panel has been installed in the wall of the bathroom used by V, that allows a caregiver to shut off the hot or cold water supply to the tub, or both hot and cold, by turning a valve. It can not be reached from inside the tub. For the first time in years, we don't have to go shut the hot water off at the hot water heater on the other side of the house. There is no need to leave V alone in the bathroom to interrupt the hot water flow. Now, only the water flow to the tub is interrupted, instead of shutting off the hot water supply to the whole house and interfering with the dishwasher or laundry as before. We used the new system last night for the first time. The caregiver said, "It's the best thing since sliced bread!"
I am thrilled to have a solution to this previously unsolvable problem. I am posting a photo of this panel for anyone who shares this problem. For additional information about how to to this, contact me and I will put you in touch with the gentleman who did the work. Anyone with plumbing experience could do this.
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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