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.

The First Challenge: Health .. continued

Before the adapted aquatics lessons began, V benefitted from the resistance of water by enjoying the community pool, the Chesapeake Bay at North Beach, and the lake at Greenbrier State Park during warm weather. When the weather didn't cooperate, we still had fun at the Germantown Indoor Swim Center, where they also allow 2 support staff to escort her in without additional cost beyond the pass for V. She loves to push her staff all around the pool, and thinks it is very funny to get them under the waterfalls there. Sometimes she doesn't want to get in the water but really enjoys watching all the other people play in the pool, and just sits on the bench and laughs at everyone having fun.
Circle of Hope Therapeutic Riding
Another activity that was incorporated into the plan of care that offered exercise benefits was therapeutic horseback riding. For many years, V had taken rides in the countryside to see the horses, which she always insisted on calling "Moo cows", as opposed to cows that are called cows as they should be. The statement "Moo cow!" was always followed by the the request to "Ride?" When we went to Circle of Hope we were finally able to grant that request. That ride that seemed like such a good idea from the ground, turned out to be somewhat frightening from up there on the back of a big horse that was walking away from familiar family, and it didn't take long for V to decide that on the ground was where she needed to be. She didn't give any warning, just got off while Sam, the horse, was still walking. Lesley Shear, the director, suggested that we try the mechanical horse for a while to get V used to the motion of saddle, and so for about 6 weeks we came to the stable to ride the mechanical version of a horse that jockeys use to train. At the same time we were practicing the motion of a walking horse, we were teaching the words "Go." to begin the motion and "Whoa" to stop the motion.
V eventually got tired of the mechanical horse, although she took the time to visit the living horses that were in their stables and give each a pat (and a kiss if she could get away with it). We decided to revisit Sam. Most weeks we couldn't get V to stay on more than once around the ring before hopping off. Occasionally we could convince her to get back on for another go once or twice more, but what was supposed to be a 30 minute lesson, rarely lasted more than 10 minutes before V was headed for the car, ready to go, once she had visited the stabled horses. Lesson would often get cancelled because of stormy weather with lightening or stable vacations, and so sometimes weeks went by without a lesson so we had a hard time getting any momentum going. We seemed stuck without forward progress. Then, sadly, Sam died, and there was not another horse with the necessary temperament to handle such an unpredictable rider as V. Many months passed before another horse could be acquired and trained who would be able to resume lessons with V. Then, that horse died as well!! Finally, lessons were back on schedule and not going any better than before. I suggested to Lesley that we try twice a week lessons in hopes that at least one lesson would actually happen each week, in order to get some routine and momentum going. She agreed but instead of progress, V began to refuse to get on the horse at all during some appointments and even refused to get out of the car. One last idea came to mind to turn things around. I asked Lesley if V's support staff could participate in volunteer training so that they would be permitted to walk beside the horse as V rode to give her a greater sense of safety and security than the volunteers that she did not know could do. Lesley agreed and I offered to pay the support staff for their time if they would attend the training. They agreed and were as excited as I when the result was a big breakthrough. The first time her staff were allowed to walk with her, she stayed on the horse three times around the ring and then got back on went 3 times more around the ring. Then next lesson, she got on the horse and didn't want to get off, even when time was up. Lesley has also seen the benefit of a little edible reinforcer, and agreed to allow mini-marshmallows to be used as a motivator. This has helped as well. We were all so glad that we didn't give up. V won't ride every time, in spite of this breakthrough, but it is progress and we are happy with progress of any kind.
Therapeutic riding will work V's core muscles and thigh muscles. It will give her an opportunity to practice following directions and to increase her verbal skills. It has potential if she is motivated to work with the staff and the horse. We will see where this goes.
Health challenges to be continued...