The First Challenge: Health part 4

Learning to handle the stimulation of a restaurant and still behave appropriately is one of our community goals. Learning to patiently wait in line for a turn and wait for food to be served while others are eating and drinking all around is another goal. Fulfilling these goals requires the repeated experience of ordering and eating in a restaurant setting. However, with the huge portions served by many restaurants and the crazy calorie counts, a person like V who doesn't have the physical capacity to get her heart rate up for a sustained period and burn off some serious calories, can't handle all that high calorie food without weight concerns, sodium, cholesterol and saturated fat concerns. How to reconcile the benefit of the restaurant experience with the problem of less than healthy food and portion sizes is the challenge.
Weekly weight checks on the scale monitor V's progress up or down in relation to her ideal weight range. I communicate what this ideal healthy weight is to the support staff, stock the fridge and pantry with healthy choices, and train staff regarding appropriate portions to be served when V eats at home, with the emphasis on lean meats and lots of vegetables and fruits. I have researched the nutrition information on the restaurants that V frequently enjoys, such as Chipotle Grill, Baja Fresh (her two favorites) and Panera Bread. I have printed out the information and placed it in her daily report binder that goes with staff on community outings and I have discussed the better choices to order. We have made progress in the right direction with healthier food choices and increased physical activity. Overall, she sleeps well, has a healthy appetite and eats almost anything given to her, and has good energy. She rarely gets sick, her hair is soft and shiny and eyes and skin are clear, so I think we are doing well.
Weight was not an issue at all when she was a pre-adolescent, but when the teenage hormones escalated frustration related behaviors, doctors tried to treat V with some of the atypical anti-psychotics that have a related side effect of dramatic weight gain and increased appetite. Although she takes none of those medications now, the aftereffects remain from that time in her life when her beautiful body was so bloated from these medications that her skin stretched beyond it's elastic capabilities and she is left with stretch marks everywhere and a continuing challenge to maintain a healthy weight.
Dental Health
Dental health is another issue that is problematic. I have been fortunate to locate a very kind dentist who accepts medical assistance and who understands that the only way to do a thorough cleaning and dental exam, including the filling of any cavities is to sedate V at the hospital and do the work while she is asleep. Another dentist tried for years to treat her by restraining her with a papoose board, which may hold the body still, but does nothing to keep the head still. The result was years of ineffective treatment that left V with 14 cavities by the time her current dentist examined her and did xrays (which the other dentist could never do because V wouldn't hold still). While normal people can just make an appointment for a cleaning, we have to schedule an appointment at the hospital and visit the primary care doctor within a few days before that hospital appointment to make sure that she is healthy enough to be sedated. We have to make an early morning visit to the hospital before any food or medication is given. Believe me, this is not an easy process with V. I am anxiously watching what her wisdom teeth are doing because I remember vividly the excruciating pain of an impacted wisdom tooth, which is something V will have no way to tell me about if it happens to her.
The fact that many doctors and dentists don't accept medical assistance at all is something that people who are healthy and can work for a company that provides insurance or who can purchase private insurance if they are self employed never have to think about. For V, medical assistance is her only option. She can't get insurance through an employer and we can't purchase private insurance for her because of her seizure disorder and medical history. Social workers tell me that in some places disabled people go without dental care because none of the dentists where they live accept medical assistance. Dental infections and gum disease can effect the overall health of a person and shorten their lives. There should laws in this country that a person with a medical license must accept a certain number or percentage of patients with medical assistance. That is my opinion on that matter anyway.

The First Challenge: Health, part 3

Beyond scheduled aquatics lessons and horseback riding lessons, there are other opportunities for exercise in the course of community activities that have been a scheduled part of each day.
This is an area where adult life is very different for V than her school life was. In school, the location of the outing was chosen for her, as well as the start and finish time of the outing. For most of her years in school, other students were along for the outing. Flexibility consisted only of the choice to remain on the school bus rather than go into the destination.
Now, V is able to choose her outing if no appointment is scheduled, by choosing a picture symbol. She leaves the house when she is ready. When she gets to her destination, she is allowed to remain in the vehicle until she is ready to transition to the location and she is given the option of changing her mind and going elsewhere if she refuses to exit the vehicle. When she has had enough, she is able to return to the vehicle. Having so much choice in the way she spends her time has reduced her frustration and need to control her life through tantrums considerably. One of my biggest goals of adult programming has been to help V unlearn the need to fight for control over her time and activities.
Working with her natural interests, one community opportunity for exercise is the pedal boats at Seneca Creek State Park. During the summer season, V and her staff go the park at least once a week to rent a pedal boat for an hour and she helps to pedal around the lake. V loves boats of all kinds; sail boats, motor boats, pontoon boats, pedal boats and even floating docks. "Boat" is one of her few words. If there were a way to tie up a private pedal boat that we could access from spring to fall at a local park, I would get one for her with an awning to shade her from the beating summer sun, but unfortunately there isn't.
Another community opportunity for exercise is walking. V and her support staff walk all around the small local private zoos such as the Reston Zoo and the Catoctin Wildlife Preserve and Zoo. V loves to watch the animals and these outings give her exercise, sunshine and fresh air as well as an opportunity to learn about the animals. She walks on the trails of the local parks, and she walks around Lewis Orchard to shop for fresh fruits and vegetables. When the weather outside is not conducive to these activities, she exercises by walking the shopping malls and bowling at the local Bowl America. She actually gets a great deal more exercise in her adult program than she ever did as student in school.
Because V has unpredictable behavior than can be too much for one adult to safely manage, I have scheduled 2:1 staffing 5 hours each day between 10 a.m. and 3:00 p.m. when V can go out for community activities. If there is a cost for her staff to escort her, then that expense is reimbursable.
One of my biggest worries for V is that if she has pain, she hasn't learned to communicate that in any way. If I can't see physical symptoms of illness such as fever, cough, runny nose or visible injury, I don't know if she is ill or injured. Often I see a change in her behavior, such as lethargy or increased irritability, but don't always recognize it as an early sign of illness. I have not figured out a way to teach her how to communicate illness, pain, or a feeling of being too hot or too cold. She doesn't even perceive these things the way that others do. During a bath, she wants to turn the water as hot as it will go and run it over her hands. We often resort to turning off the water at the hot water heater, shutting off hot water flow to the entire house, to stop this behavior. I have not been able to locate a device that will control the temperature of the water flow from her bathtub and sink faucet yet, in spite of internet searches and request for help from various agency representatives. Some problems are hard to solve. It isn't enough to just turn the faucet off because she insists on turning it back on and this can lead to agitated behavior in the tub.
I digress, though. I hope that V's speech therapist can help me to figure out a way to teach V to communicate physical discomfort somehow, over time.