No matter how great self-directed programming is, it can't solve this. I wish I could say that a disastrous medical appointment is the exception, but it isn't. It is the norm. I would like to know what MY blood pressure is each time I have to take V to the primary care doctor, the psychiatrist, the gynecologist, or the hospital.
The variable most likely to CAUSE a preventable problem is the wait. If I try to bring in stickers or coloring book and crayon, she won't stop doing it to cooperate with the exam by the nurse or doctor. If I bring in a portable DVD, the content of the movie can agitate her. There is nothing I can do to reduce the chance of a problem, short of keeping the entire event as short as possible.
It doesn't matter if I warn the nurse that V can't tolerate a very long wait and that the window of opportunity to be able to examine her with cooperation or ask me questions is short. It doesn't matter that I explain that if she is in the waiting room too long, she will get tired and decide to leave and won't come back, and that there will no stopping her. It doesn't matter that I tell them that if they keep us waiting in the examination room too long, she may have a melt-down, becoming aggressive and destructive. I explain to them that she should wait in the car until they are ready to see her. I sign her in and wait in the office, while my staff or husband wait in the car with her until the nurse gives me the sign that the doctor will be free in a few minutes, and then we bring her inside. Inevitably they keep us waiting inside with her for another 15 or 20 minutes before the doctor comes, and my tension rises each minute in anticipation of the tantrum that may occur any minute, know that the chances are increasing with each minute that we wait.
Today I had to take V to the Primary care doctor to get a form filled out for the dentist and the hospital to clear her for anesthesia for next weeks dental cleaning.
This is a new doctor, because the pediatrician said at the age of 22 it is time for her to go to a grown up doctor. We arrived on time for a 2:00 appointment, only to be told that the doctor was not there and would be another 15-20 minutes before he arrived. I said we would leave and come back in 20 minutes after explaining my daughter's inability to wait. Off we drove, and I returned 20 minutes later and went back inside the office by myself. Now I was told that he would be arriving in a couple of minutes, but that there was another patient ahead of us that he would see first. She couldn't have told me that the first time that arrived for the appointment? I explained that I would wait in the office and keep V in the car with her staff until it was time for the doctor to see her. It was 2:20. About 2:30 the nurse said to bring her into the office and we went back to the examination room, and waited. The nurse did the usual blood pressure and weight check and then left us to wait for the doctor.
After another 15 minutes, I explained that we were running out of time for many reasons. I couldn't guarantee how much longer I could hold V in the office as she was getting restless. Second, she had soaked through her depends undergarment and was in wet pants and I had no way to change her into dry clothes until I got home, and third, my staff were nearing the end of their shift. "Well, he is still with the other patient and there is nothing I can do", she said. Finally, after 3:00 the doctor came in and time had run out for V. We had the feared meltdown and she had to be carried out to the waiting room by all of us, scratching away at our hands. We calmed her down enough to get her back into the car without an exam, in the rain, and we were all soaked. I came back in, alone, to get the form I needed and waited while he filled it out. My paper took 5 minutes, but I had waited a hour while he spent 40 minutes with the first patient. My daughter had an avoidable tantrum had the office had the courtesy to reschedule our appointment for a more likely time for actual treatment to occur. And yet, there is a large sign telling the patients that they will be charged $50.00 if they cancel their appointments with less than 48 hour notice. I got my staff back home for the end of their shift at 3:30 exactly, which is crazy when I only live 10 minutes from the doctor's office and had a 2:00 appointment.
None of the medical offices that we visit are any more sensitive to the difficulties of treating a patient that is the size of an adult, filled with tension and anxiety and unable to understand reason. They make these appointments nightmares for all involved when they could make it so much easier on everyone if they tried. Why is it so hard to get through to medical personnel? Why is it so hard to understand that we can not bring her into the facility until they are ready to treat her. What is it about, "She can't tolerate the wait and will become aggressive if we try to keep her waiting too long." that they can't understand?
She needs the medical treatment, but I am the one completely stressed out when it is done.
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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