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...

The First Challenge: Health

When I sat down to write a plan of care for V's adult life, my first concern was maintaining her optimal health so that her quality of life would not be compromised.
One obstacle to this goal was V's tendency to obsess over food and her inability to understand the importance of healthful eating habits and healthy weight. V loves potatoes, rice, ice cream, and many other things that when eaten to excess, can cause problems in this area. At home, she will keep returning to the refrigerator or pantry again and again, as long as one of these highly preferred foods are visible, until she has eaten it all, and will become agitated if told that she can't have more. For me, it means that I rarely buy ice cream to have at home and if I buy sweets or chips, they have to be hidden. Hiding leftover mashed potatoes or rice is trickier.
Community outings present further food related challenges. There seems to be nowhere to go that doesn't offer food. The bowling alley always has a snack bar open. The zoo requires that everyone pass through the gift shop where chips, soda and ice cream are for sale. The state parks have vending machines in the boat house where sodas can be purchased when she goes for a pedal boat ride. The concessions at the movie theater are unavoidable at times. Even the gym has root beer and energy bars for sale at the check in desk. The only places I can think of where food is not an issue is the library and the outdoor playgrounds.
Once, we took V to the Petsmart to buy dog food, and she became convinced that a dog treat at the checkout counter was a candy bar. The only way to avoid a full blown tantrum was to let her see for herself by taking a bite, after failing to convince her it was not a candy bar, but a dog treat. The look on her face as she handed it back was proof that she finally figured out that I was telling her the truth.
One way to address the issue of healthy weight was to build in opportunities for exercise in her plan of care. Physical activities are limited for V by her hip dysplasia which causes a severely pidgeon toed gait and by her impaired motor skills.
Adapted Aquatics Instruction
I remembered how much she had enjoyed playing in the pool as she was growing up and how she enjoyed her weekly adapted aquatics lessons at Longview School, and so Adapted Aquatics lessons became part of her plan of care. Who would provide the instruction and what it would cost were two questions that I had no answer for at first. I had hoped that the instructor at Longview School or Stephen Knolls School would be willing to work with V after school or on the weekend, but their schedules were too busy. I found adapted aquatics instruction in Texas online and used the hourly rate that was posted there to create a budget and hoped that it would be acceptable to whoever I eventually found to provide the instruction here. In the end, it took a year of searching the internet, sending emails, and making phone calls before I finally found someone qualified and interested in the position.
A facility where the instruction could take place was another requirement. I selected the healthtrax fitness center, which had a heated lap pool, and an even warmer therapy pool. The management agreed to allow 2 personal support staff to accompany V on her visits at no charge, as well as her adapted aquatics instructor. The advantage of this location is that there are other opportunities for exercise if V is not in the mood to get in the water on any given day. Recently, she has been learning to use the stationary bike.
... to be continued.