V's petit mal seizures and her tantrums began at the age of 3, but there were earlier physical expressions of her frustrations. As a toddler, I remember how she would try to bite the carpet or the arm of a chair. Unfortunately, she soon learned that her hand was a more convenient target for her little teeth when she was overwhelmed. Hand-biting became her go-to release, and although she didn't break the skin, she bit her hand so often that the skin on her hand became calloused from the bites. Other physical expressions of her frustration followed in later years, from scratching, pinching, biting others, hair pulling, kicking, droppping to the ground and screaming, throwing or knocking over any available item, or tearing off her own clothing. Naturally these behaviors garnered V quite a bit of attention, as they were nearly impossible to ignore. School put in place behavior management plans, with little impact.
Transportation Safety
Since tantrums could occur in moving vehicles as easily as anywhere, the school bus staff provided a safety vest for V to wear on the bus to keep her in her seat for her own safety and the safety of others. I eventually purchased one of these harnesses for use in my personal vehicle, but as long as she was sitting in the seat behind me, she could still reach me while I drove if she became agitated. I feared that one day she would cause me to have an accident while driving, and eventually this fear was addressed by the purchase of a vehicle with a 3rd passenger row where she could be safely restrained with her harness. A seat belt is not sufficient restraint because she can unhook it and doesn't know how to put it back on. It is not safe to have to keep pulling off on the side of the road to rehook the safety belt, so the type of vest that was used on the bus is much more secure. I have created a link at the top of the page to the company that makes these vests and they can be purchased by private individuals and shipped. Now that we have the 3rd passenger row of seats and use the safety vest, I feel that everyone on the road is safer when V is riding. As you can imagine, public transportation presents a challenge on many levels. First, waiting is a skill that V is still learning, and patience is not her middle name. I have not attempted to fly anywhere with V since she was 9 years old and we took our last flight.
Like other people, I purchased 2 tickets on AirTran from Dulles International to Fort Lauderdale, Florida to visit V's paternal grandparents. At the gate, she wanted to board the flight but they were not quite ready to board and she dropped to the floor and had a tantrum more typical of what you would expect of a two year old. She calmed down, but as we walked down the jetway to board the flight, the pilot came out of the plane and pulled us out of line. He proceeded to survey the other passengers in line, asking them, "Do you think these people should be allowed to fly on this plane?" One of the passengers whispered to me,"I would sue this company!"
I explained to the pilot that my daughter could not understand why she couldn't board the plane, but was perfectly happy now that she could and that we had flown many times without any danger to anyone. I also told him that we had purchased valid tickets to travel, just like everyone else in line, and that he would expose his company to a discrimination law suit if we were denied boarding. The pilot backed down and allowed us to travel, but placed us in the last row of the plane, blocking off the rows beside and in front of us, as if we were contagious. V was perfectly behaved during the entire flight, because she loves to fly and one her few words is "plane". I dreaded the return trip but called AirTran to report what had happened to get an assurance that we would not be treated the same way on our return flight. The supervisor arranged an escort for us through the airport and to our seats, and we had an uneventful return trip. However, that experience left such a bad taste in my mouth that I have never attempted to travel by air again with V since then. To say that the experience was humiliating would be an understatement. It is sad because we had traveled on standby with my former employer, Delta Air Lines, many times before and been treated very well. The only difficulty I had was that V was very sensitive to the sound of voices over an intercom, and every time the pilot or flight attendant spoke over the intercom, V would become agitated and grab on to me in a panic. But this behavior only impacted my comfort and V's, not the safety of anyone else.
...safety to be continued...
Friday, April 17, 2009
Thursday, April 16, 2009
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.
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.
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.
Wednesday, April 15, 2009
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...
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.
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.
Tuesday, April 14, 2009
The Framework
Self direction for V means having the support of a lot of people.
First, there is the psychiatrist who prescribes the medications that manage seizure activity and anxiety. V is very fortunate to be treated at the Kennedy Krieger Institute in Baltimore, MD. I can't speak highly enough about the work that is done there.
Then, because medication has to be administered by personal support staff, there is a state requirement that a supervising nurse oversee the medication records that are maintained and that she monitor the overall health of the client with 45 day visits. V's nurse trained her caregivers to be certified med techs, a 20 hour program, so that they would be in compliance with DDA requirements for any staff that administer medication. The state requires that anyone who provides direct care also have current CPR and First Aid certificates.
Five of V's 6 personal support staff have completed CNA (certified nursing assistant) training. These people are responsible for preparing meals, helping with all grooming and hygiene needs, transporting V to community activities, setting up stimulating activities at home and maintaining detailed records about her day. The state requires background checks for all staff and I require driving records for anyone who drives V anywhere.
V has a Behavior Analyst who supports family and staff by reviewing daily records for patterns or trends in her aggressive or destructive behaviors, and provides training to family and staff for ways to safely handle and minimize these incidents. Luckily for us, her analyst at Matthews Center for Visual Learning had 2 years of experience with V and was willing to continue to work with her privately.
The Speech Therapist took a year to find. There is such a shortage of people with this training and they are in such demand that most are too busy to take on private clients and few have the experience of working with a population with V's particular needs. Because the private school that V attended during her last two years was unable to locate a Speech Therapist for their students, our county agreed to send someone on staff to provide some compensatory services. My hope was that this person would be willing to continue privately when county services were completed and my hopes have been fulfilled in this matter. V requires so much help learning to express her needs and wants and her staff and I need help learning how to assist her that these services are really critical to her continued progress.
Another service provider who was extremely difficult to find was someone to provide Adapted Aquatics instruction. After a year of searching, I finally found someone at the University of Maryland that I am extremely happy with. Her rapport with V was immediate and the support staff really enjoy working with her. V has access to the Indoor Swim Center and also the lap pool and therapy pool at Healthtrax Fitness and Wellness. At the fitness center, she can pedal the stationary bike if she doesn't want to go into the pool. The instructor is experienced in adapted P.E. and Special Olympics, so she is able to support an exercise program in or out of the pool.
Therapeutic Horseback riding was already in place before adult services began, but I appreciate that Circle of Hope Therapeutic Riding has been so patient and flexible with V. Three of her personal support staff have completed the volunteer training at COHTR so that they could walk beside the horse as V rides. It has really made a difference in her willingness to get on the horse and to remain on the horse for a longer period of time.
I came pretty close to finding an Occupational Therapist to assist V with her self care skills that are difficult due to motor skill impairments and cognitive impairments. That position is not yet filled. Setting up these services takes lots of time and effort, and is the hardest part of self direction.
As my stepfather says, V uses a lot of resources. Although I represent her as her legal guardian and her Support Broker, V is the employer of record. Kind of funny!
Under New Directions, I had to choose a Fiscal Management Agency to do all the tax forms and payroll. I selected The ARC of the Central Chesapeake Region for my FMA, and Amy Leonard has been great to work with. My phone calls and emails are answered almost immediately and she is always helpful. I never touch the money, it goes directly to the staff and service providers in the form of checks issued by the ARC. I have to figure out the rates of pay to offer and then stay within the budget provided by the state. I guess I am learning valuable skills in the process.
Since every person using the New Directions Waiver has different needs, their plan of care is different from V's. There is a Resource Coordinator assigned to the case by DDA, who is nice and as helpful as she can be, but with so many clients who all have different needs and interests, it can be hard to answer questions about where to find service providers. We have made a lot of progress in our first 9 months!
First, there is the psychiatrist who prescribes the medications that manage seizure activity and anxiety. V is very fortunate to be treated at the Kennedy Krieger Institute in Baltimore, MD. I can't speak highly enough about the work that is done there.
Then, because medication has to be administered by personal support staff, there is a state requirement that a supervising nurse oversee the medication records that are maintained and that she monitor the overall health of the client with 45 day visits. V's nurse trained her caregivers to be certified med techs, a 20 hour program, so that they would be in compliance with DDA requirements for any staff that administer medication. The state requires that anyone who provides direct care also have current CPR and First Aid certificates.
Five of V's 6 personal support staff have completed CNA (certified nursing assistant) training. These people are responsible for preparing meals, helping with all grooming and hygiene needs, transporting V to community activities, setting up stimulating activities at home and maintaining detailed records about her day. The state requires background checks for all staff and I require driving records for anyone who drives V anywhere.
V has a Behavior Analyst who supports family and staff by reviewing daily records for patterns or trends in her aggressive or destructive behaviors, and provides training to family and staff for ways to safely handle and minimize these incidents. Luckily for us, her analyst at Matthews Center for Visual Learning had 2 years of experience with V and was willing to continue to work with her privately.
The Speech Therapist took a year to find. There is such a shortage of people with this training and they are in such demand that most are too busy to take on private clients and few have the experience of working with a population with V's particular needs. Because the private school that V attended during her last two years was unable to locate a Speech Therapist for their students, our county agreed to send someone on staff to provide some compensatory services. My hope was that this person would be willing to continue privately when county services were completed and my hopes have been fulfilled in this matter. V requires so much help learning to express her needs and wants and her staff and I need help learning how to assist her that these services are really critical to her continued progress.
Another service provider who was extremely difficult to find was someone to provide Adapted Aquatics instruction. After a year of searching, I finally found someone at the University of Maryland that I am extremely happy with. Her rapport with V was immediate and the support staff really enjoy working with her. V has access to the Indoor Swim Center and also the lap pool and therapy pool at Healthtrax Fitness and Wellness. At the fitness center, she can pedal the stationary bike if she doesn't want to go into the pool. The instructor is experienced in adapted P.E. and Special Olympics, so she is able to support an exercise program in or out of the pool.
Therapeutic Horseback riding was already in place before adult services began, but I appreciate that Circle of Hope Therapeutic Riding has been so patient and flexible with V. Three of her personal support staff have completed the volunteer training at COHTR so that they could walk beside the horse as V rides. It has really made a difference in her willingness to get on the horse and to remain on the horse for a longer period of time.
I came pretty close to finding an Occupational Therapist to assist V with her self care skills that are difficult due to motor skill impairments and cognitive impairments. That position is not yet filled. Setting up these services takes lots of time and effort, and is the hardest part of self direction.
As my stepfather says, V uses a lot of resources. Although I represent her as her legal guardian and her Support Broker, V is the employer of record. Kind of funny!
Under New Directions, I had to choose a Fiscal Management Agency to do all the tax forms and payroll. I selected The ARC of the Central Chesapeake Region for my FMA, and Amy Leonard has been great to work with. My phone calls and emails are answered almost immediately and she is always helpful. I never touch the money, it goes directly to the staff and service providers in the form of checks issued by the ARC. I have to figure out the rates of pay to offer and then stay within the budget provided by the state. I guess I am learning valuable skills in the process.
Since every person using the New Directions Waiver has different needs, their plan of care is different from V's. There is a Resource Coordinator assigned to the case by DDA, who is nice and as helpful as she can be, but with so many clients who all have different needs and interests, it can be hard to answer questions about where to find service providers. We have made a lot of progress in our first 9 months!
The Pros and the Cons
V lives with us at home. After years of talking to people who had worked in or supervised group homes for people with developmental disabilities, I learned that the care can be great or poor, depending on the staff of the home at any given time. I learned about incidents of injuries to clients that went unreported and untreated. I learned of drugs that were brought into the group homes by caregivers and clients who were taken to parties where drugs were present. With the knowledge that my daughter can be aggressive and destructive when she is agitated, and that she has no ability to communicate that someone has abused or neglected her, she is too vulnerable to be in a group home. While she lives with me, I can monitor her care and health closely. I am able to advertise, interview, train and supervise her personal support staff myself. I am in control of the quality of the food that she consumes. I can provide safe transportation for her in a privately owned and maintained vehicle. I can give her love and affection every day. I feel that this is the healthiest and safest environment for her, being part of a family with parents and pets. I can choose her doctors, activities, service providers and know their qualifications and performance.
There are many advantages to V and peace of mind about her welfare for me. There is also a great deal more responsibility for a parent than they would have otherwise. It is my responsibility to locate staff and service providers, which can be difficult and time consuming. It is my responsibility to complete time sheets for staff and payment forms for vendors at least once every 2 weeks. Since food, clothing, medical copays and entertainment for V are not provided by the state under New Directions, these things come out of family budget. While mileage can be reimbursed for transportation, the cost of the vehicle is not covered and that is also paid from out family budget. Vacations or overnights away from home for my husband and I take a lot more planning and preparation because overnight care has to be arranged and written directions left for staff. I have to personally cover staffing shortages or absences , or make arrangements for other staff to cover this shift. It is like running a small agency from my home, coordinating schedules and training for this crew that my daughter requires.
One of the most difficult things about this arrangement is that this program is limited to residents of Maryland. If I want to move to another state, I give up everything that I have put in place for V and have to navigate an entirely new system, and likely remain on a waiting list for services for quite some time. My husband's entire family is in Virginia and my entire extended family is in Virginia, but moving nearer to them is not an option because there is no self directed program in that state. I don't know which states may have something similar to this kind of program. Even within my state, moving very far would mean finding and training a whole new staff, and finding new vendors. So, taking on this responsibility means feeling restricted about where you can live and when you can leave home even for short periods. For me, I accept the down side of all this because I love my daughter and her happy life is worth it. My husband is a stepfather who did not meet my daughter until she was 15 years old, and he is a special man to accept all of these restrictions on his life out of love for me.
There are many advantages to V and peace of mind about her welfare for me. There is also a great deal more responsibility for a parent than they would have otherwise. It is my responsibility to locate staff and service providers, which can be difficult and time consuming. It is my responsibility to complete time sheets for staff and payment forms for vendors at least once every 2 weeks. Since food, clothing, medical copays and entertainment for V are not provided by the state under New Directions, these things come out of family budget. While mileage can be reimbursed for transportation, the cost of the vehicle is not covered and that is also paid from out family budget. Vacations or overnights away from home for my husband and I take a lot more planning and preparation because overnight care has to be arranged and written directions left for staff. I have to personally cover staffing shortages or absences , or make arrangements for other staff to cover this shift. It is like running a small agency from my home, coordinating schedules and training for this crew that my daughter requires.
One of the most difficult things about this arrangement is that this program is limited to residents of Maryland. If I want to move to another state, I give up everything that I have put in place for V and have to navigate an entirely new system, and likely remain on a waiting list for services for quite some time. My husband's entire family is in Virginia and my entire extended family is in Virginia, but moving nearer to them is not an option because there is no self directed program in that state. I don't know which states may have something similar to this kind of program. Even within my state, moving very far would mean finding and training a whole new staff, and finding new vendors. So, taking on this responsibility means feeling restricted about where you can live and when you can leave home even for short periods. For me, I accept the down side of all this because I love my daughter and her happy life is worth it. My husband is a stepfather who did not meet my daughter until she was 15 years old, and he is a special man to accept all of these restrictions on his life out of love for me.
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