I call this post the marathon, as opposed to the sprint, because you have to pace yourself to make it to the end. Providing for a special needs child is a long term commitment, even if you do not provide the direct care yourself. As a child with a severe developmental disability grows up, they change physically, but do not separate from you in the way that a normal child would. They still need care in many of the ways that a younger child would.
If you provide the care yourself, it can severely limit the pursuit of your own goals and interests and you can lose your sense of yourself in the desire to meet the needs of your child perfectly. If you allow others to provide the direct care, then you may worry if your child is safe or happy and if you are providing sufficient oversight to ensure the well being of your child. The challenge is to strike the balance between involvement to the point that it overwhelms your own life, and lack of sufficient involvement to be adequately assured that your child's needs are met.
Finding and maintaining that balance has been an ongoing goal for me. As parents, we have to remember that we have many roles in our lives besides our role as a parent. We are the children of our parents, we are siblings, we are friends, we are employees, we are neighbors and we have interests and passions apart from our children. We have to allow time for all of those roles if we are to maintain our own identity and not lose our perspective. Do you make time to eat well and exercise? Do you get enough sleep? Do you have a creative or spiritual outlet in your life? You must take care of yourself physically and mentally to be the best that you can be for your child in the long run. If you don't, you run the risk of caregiver burnout.
Every now and then I have read a tragic story in the paper of a murder/suicide committed by a parent of a special needs child. These parents drowned in the attempt to meet the needs of their child without sufficient supports and they drowned in the belief that if they could not personally meet the needs of their child, that no one would. It is that fear that we carry, "If not me, then who?" There is no doubt that guilt follows the decision, on occasion, to put our own needs first.
Do you suffer the same recriminations that I do? Do you think, " I should be more patient." "I should be more attentive." " I should put more time and effort into my child's care/program."
I make mistakes and disappoint myself sometimes, then I forgive myself and move forward. I know I will never do this perfectly and I don't even know what perfect would look like.
I do know that it is important to take breaks, have fun and relax, put your worries aside on a regular basis. This is how you recharge your batteries and come back to this task refreshed and ready to give your best.
To parents of special needs children of any age I say,"Be kind to yourselves and be forgiving of yourselves. Allow others to help you, even if they won't do the job the way that you would. If your child is safe, healthy and relatively happy, then it is okay."
Thursday, April 23, 2009
Wednesday, April 22, 2009
Respite Care or Intensive Support Services in the Home
To any parent who is beginning to receive in-home support services for a disabled child I would say this. First, think about what the person who will be providing help to your child will be doing and think about how you want it to be done.
An agency who sends staff to your home is not likely to give you any guidance about working with staff for your child. Realize that the way things were done at the last place this person worked may not be the same way that you want things done in your home. Some people want to receive lots of detailed guidance from you and some want to be left to use their own judgment. Whether or not the person is a good fit for you and your child depends on the match between how much input you want to have and how much the staff person is comfortable taking.
If you are very involved and like to micro-manage your child's care then you won't work well with someone who doesn't like too much input from a parent. If you are just getting started and don't really feel comfortable telling someone how to do their job, then you won't work well with someone who wants to be told how to do everything.
The reality is that if you don't know what you want and how you want it from support staff, you are not likely to get it. The more that you can think things through and put your expectations in writing, the more clear your expectations will be to anyone who is supporting your child.
Think also about what kind of feedback you want from support staff. If all of your communication is verbal, then you are likely to think of questions after your staff have left and may be out of reach. If you can anticipate your most likely questions, then provide a written form where staff can answer those questions before they leave.
These are things that I learned between the time I began to receive help in 1997 and now. Many of my written guidelines for support staff came about because of things that went wrong. My Daily Report form is the result of questions that I inevitably had for staff after they had already left. Written guidelines regarding transportation of my daughter were developed about 6 months after staff began driving my daughter in our family vehicle. Then I had to think about things like what I would want them to do if there was a mechanical problem and they broke down or were in an accident. After finding the tank on empty in the driveway in the winter, I had to educate staff about maintaining fuel at no less than a half tank to avoid the danger of running out fuel while driving V, and the danger of freezing condensation in the fuel line.
It is time consuming to interview and train someone to come to your home and work with your child, and clear communication and expectations from the beginning minimize the chance of misunderstanding and disappointment later that may require an inconvenient transition to someone new for you and your child.
An agency who sends staff to your home is not likely to give you any guidance about working with staff for your child. Realize that the way things were done at the last place this person worked may not be the same way that you want things done in your home. Some people want to receive lots of detailed guidance from you and some want to be left to use their own judgment. Whether or not the person is a good fit for you and your child depends on the match between how much input you want to have and how much the staff person is comfortable taking.
If you are very involved and like to micro-manage your child's care then you won't work well with someone who doesn't like too much input from a parent. If you are just getting started and don't really feel comfortable telling someone how to do their job, then you won't work well with someone who wants to be told how to do everything.
The reality is that if you don't know what you want and how you want it from support staff, you are not likely to get it. The more that you can think things through and put your expectations in writing, the more clear your expectations will be to anyone who is supporting your child.
Think also about what kind of feedback you want from support staff. If all of your communication is verbal, then you are likely to think of questions after your staff have left and may be out of reach. If you can anticipate your most likely questions, then provide a written form where staff can answer those questions before they leave.
These are things that I learned between the time I began to receive help in 1997 and now. Many of my written guidelines for support staff came about because of things that went wrong. My Daily Report form is the result of questions that I inevitably had for staff after they had already left. Written guidelines regarding transportation of my daughter were developed about 6 months after staff began driving my daughter in our family vehicle. Then I had to think about things like what I would want them to do if there was a mechanical problem and they broke down or were in an accident. After finding the tank on empty in the driveway in the winter, I had to educate staff about maintaining fuel at no less than a half tank to avoid the danger of running out fuel while driving V, and the danger of freezing condensation in the fuel line.
It is time consuming to interview and train someone to come to your home and work with your child, and clear communication and expectations from the beginning minimize the chance of misunderstanding and disappointment later that may require an inconvenient transition to someone new for you and your child.
Tuesday, April 21, 2009
Coordination of Resources for Parents
The title of this post is misleading. It was my experience that there was no centralized source of information to guide parents to the services that they needed. If there is now, I still don't know about it. That is the primary reason that I am writing now. Privacy regulations, while protecting the privacy of children and their families, also prevents parents of disabled children from finding each other, talking to each other and sharing important information.
When I finally tapped into the respite services after V's stay at KKI, the agencies involved were shocked that they had not heard of V years earlier because of the intensity of her needs. They could hardly imagine that I had made it on my own with her for so long.
You would think that, at the point that a child is identified as having a disability, they would be assigned to the case of a social worker, or someone who would direct them as to who to call to arrange necessary resources and supports. You might think that contact names and phone numbers would be provided. It could have happened when Child Find made the identification. It didn't. It could have happened through the pediatrician when he became aware of the severity of V's disability, but it didn't. It could have happened through the school system, because of the special education services that V received there, but it didn't. Most of what I found for V was found by accident or by dogged determination to solve a problem. But, a parent can't look for something that they don't even know exists.
I don't believe that the pediatricians or special education teachers are informed about these resources. They are concerned with their particular role in the life a child. If they had the knowledge, I believe they would share it when appropriate.
What would help a parent in my position? It would have helped if special education teachers and pediatricians were provided with a list of resource contact names and phone numbers that they could share with parents, early in the life of a disabled child. What did I need to know? I needed to know that respite services were available and how to access them. I needed to know the name of a dentist who had experience and the desire to work people with developmental disabilities. The name of a pediatrician or general practitioner with expertise in the area of developmental disabilities, a neurologist, and eventually when my daughter became a young woman, a doctor who could address those issues who understood that examinations might be difficult at best. I could have used contacts to help me make my home safer and to make transportation safer. I could go on and on, but you get the idea. Now, since Maryland has the Autism Waiver for school age children, parents can receive a list of respite care providers and contractors that can address some home safety or accessibility issues. However, try to call those contractors and good luck getting anyone to answer or return phone calls. When V was covered by that waiver, I tried again and again without any success at all.
I have thought for years about how the necessary information could be disseminated to the people who need it most. What office or agency could take the lead on this effort. Anyone out there who has a thought about this, please post your comments.
Raising a disabled child can be an isolating experience in certain ways. Friends and family who are raising normal children have their issues, but they are different issues. They would help if they could, but for the most part don't know how. Even other parents of disabled children have different concerns because no two disabled children have the same needs or abilities.
I would tell another parent to be an advocate for their child. Don't be intimidated by professionals and don't worry about being liked or being easy to work with. I don't mean that anyone should be rude or unpleasant. I mean that parents need to ask lots of questions until they fully understand what doctors and teachers are saying and why they make the recommendations that they do. Contribute your views and your knowledge of your child and argue strongly for the things that you believe, but be prepared to back up your position. An informed, involved and articulate parent will be listened to.
When I finally tapped into the respite services after V's stay at KKI, the agencies involved were shocked that they had not heard of V years earlier because of the intensity of her needs. They could hardly imagine that I had made it on my own with her for so long.
You would think that, at the point that a child is identified as having a disability, they would be assigned to the case of a social worker, or someone who would direct them as to who to call to arrange necessary resources and supports. You might think that contact names and phone numbers would be provided. It could have happened when Child Find made the identification. It didn't. It could have happened through the pediatrician when he became aware of the severity of V's disability, but it didn't. It could have happened through the school system, because of the special education services that V received there, but it didn't. Most of what I found for V was found by accident or by dogged determination to solve a problem. But, a parent can't look for something that they don't even know exists.
I don't believe that the pediatricians or special education teachers are informed about these resources. They are concerned with their particular role in the life a child. If they had the knowledge, I believe they would share it when appropriate.
What would help a parent in my position? It would have helped if special education teachers and pediatricians were provided with a list of resource contact names and phone numbers that they could share with parents, early in the life of a disabled child. What did I need to know? I needed to know that respite services were available and how to access them. I needed to know the name of a dentist who had experience and the desire to work people with developmental disabilities. The name of a pediatrician or general practitioner with expertise in the area of developmental disabilities, a neurologist, and eventually when my daughter became a young woman, a doctor who could address those issues who understood that examinations might be difficult at best. I could have used contacts to help me make my home safer and to make transportation safer. I could go on and on, but you get the idea. Now, since Maryland has the Autism Waiver for school age children, parents can receive a list of respite care providers and contractors that can address some home safety or accessibility issues. However, try to call those contractors and good luck getting anyone to answer or return phone calls. When V was covered by that waiver, I tried again and again without any success at all.
I have thought for years about how the necessary information could be disseminated to the people who need it most. What office or agency could take the lead on this effort. Anyone out there who has a thought about this, please post your comments.
Raising a disabled child can be an isolating experience in certain ways. Friends and family who are raising normal children have their issues, but they are different issues. They would help if they could, but for the most part don't know how. Even other parents of disabled children have different concerns because no two disabled children have the same needs or abilities.
I would tell another parent to be an advocate for their child. Don't be intimidated by professionals and don't worry about being liked or being easy to work with. I don't mean that anyone should be rude or unpleasant. I mean that parents need to ask lots of questions until they fully understand what doctors and teachers are saying and why they make the recommendations that they do. Contribute your views and your knowledge of your child and argue strongly for the things that you believe, but be prepared to back up your position. An informed, involved and articulate parent will be listened to.
Monday, April 20, 2009
Kennedy Krieger and the NBU
I had no idea when I drove to Baltimore to admit V to the NBU, that she would not return home for another 6 months. I probably would have turned around if I had known.
First, the Broadway Campus of KKI is in a dismal part of Baltimore, just next to Johns Hopkins, and V was only permitted to leave the building for 4 hours at a time during her stay. I live at least an hour drive from there, so I felt it would be too difficult for us both, emotionally, to come home for 2 hours and then return her to her temporary residence.
On the NBU there is a team approach to diagnose and treat aggressive, destructive and self-injurious behaviors in patients who have developmental disabilities. V was 10 years old when she was admitted. She was given a bed in a room with 2 other patients on the unit. There were other bedrooms, 2 common areas, a time out room, a medical room for the nurses to check patients and administer meds, and an observation room.
V was allowed to take her depakote for seizures, but any other behavior related meds were immediately discontinued and a period of "baseline" assessment began. As medical doctors, psychiatrists, behavioral psychologists, special education teachers, speech therapists, occupational therapists and nurses began a global evaluation of the possible causes for the maladaptive behaviors, a technician counted each behavior with a clicker, every moment the patient was awake. The technician would respond verbally to each behavior as they imagined a parent or teacher might do in the natural environment. "Stop.", "Don't do that.", was heard over and over by every technician assigned to a patient on the unit. The behavior data was collected and analyzed by the psychologist for patterns to identify the motivation and reinforcement of the the behavior. A protocol was designed by the psychologist to be tried out by the technician while the patient's response was monitored and recorded. Meanwhile a teacher and therapists continued to work with the patient, as if they were in school, and also to implement the protocol as they interacted with the patient. When the baseline period was over, the psychiatrist tried new medications, while effects, both positive and negative, were observed and documented. When the protocol was deemed complete, then it was time to bring the parents in for training on how to implement the protocol. For me this involved having to practice the protocol on V while being videotaped, several times on different occasions before she would be released back into my full time care.
This description of how the NBU works is a very quick and dirty overview of what happens. Spending time on the NBU, visiting your child, can at times be like a level of hell in Dante's Inferno. Remember, all the patients on the unit are there because of severe behavior issues that could not be resolved with less intensive interventions, and there were times that one patient could set off the others.
I spent the first couple of days on the unit with V, sleeping at the Ronald McDonald house that first night. When I went back to work, I traveled each evening to Baltimore, arriving around dinner time and stayed until V was sleeping in her bed. It was really important to me that V never feel abandoned in a strange place away from home and all of her familiar routines, so I bathed her each evening, put on her pajamas, brushed her hair and read to her until she fell asleep each night. I did this 4 days a week, and one day on the weekend, while her father or my mother came to see her on the 2 days a week that I did not. When the weather wasn't too bad, we went to Fells Point to walk and take rides on the water taxis over to the Inner Harbor. The time I spent on the NBU was difficult, but the things I saw there put some perspective on my own challenges. One little girl on the unit had scratched at her eyes until she blinded herself. Another little boy had a degenerative disease, and his father, who was a professional football player, traveled a much greater distance than I had to in order to visit his son, who was only going to get worse rather than better.
When V was asleep in her bed, I drove home from the NBU, at times drained and discouraged. For those 6 months, my whole life was work and the NBU, nothing else. So, when self pity got hold and started the spiral of negative thoughts, I told myself,"STOP!" Then I would start to count my blessings. The list of things in life to be thankful for and happy about was always so much longer the list of troubles, that I regained my strength each time. Sometimes the list held such simple things as the feel of warm laundry in my arms, fresh from the dryer on a really cold day. It may be reaching, but this habit has kept me going time and again.
I spent so much time on the NBU, that I befriended some of the nurses and went out with them a couple of times, socially. Most parents do not spend time visiting like I did, and that is not a judgement of them. But I remember one little girl who slept in the bed next to V. One night as I read to V at bedtime, the little girl started to cry. I asked her what was wrong and she said, "I wish my mother would come and see me like you do." Some families lived far away. People come to KKI from all over the world. Some patients came from group homes or institutions and had no family to visit them.
One of the best things that happened on the NBU was the night I overheard a parent talking to a technician about respite care. I didn't know anything about it and had never received any kind of support in my care of V from local agencies, but I was determined to find out more.
V had entered the NBU on New Years Eve and it was June before she was deemed ready to come home. The length of her stay was highly unusual, but the team felt she had been an exceptional challenge. Her protocol was elaborate and the prospect of implementing it in our home, alone, was overwhelming. One service that KKI provided was follow up by an out-patient behavior analyst who provided training and support at V's school for her teacher and aide. Everyone who spent time with V was supposed to be trained and on board to be consistent with the protocol.
I knew that I would need help. I made some calls and learned about a state initiative referred to as Return/Divert. The idea was to provide wrap around supports to families in order to keep children at home who were at risk of becoming institutionalized. The resource that I turned to for this help was the Collaboration Council of Montgomery County and I have posted a link to the website for this organization for your assistance. I arranged for the school system to refer V for consideration of these services and she was approved.
This was the beginning of respite care in our home for V, funded by state and county funds. It was what made it possible for V to remain in my home and in a local school, while I worked to support us.
First, the Broadway Campus of KKI is in a dismal part of Baltimore, just next to Johns Hopkins, and V was only permitted to leave the building for 4 hours at a time during her stay. I live at least an hour drive from there, so I felt it would be too difficult for us both, emotionally, to come home for 2 hours and then return her to her temporary residence.
On the NBU there is a team approach to diagnose and treat aggressive, destructive and self-injurious behaviors in patients who have developmental disabilities. V was 10 years old when she was admitted. She was given a bed in a room with 2 other patients on the unit. There were other bedrooms, 2 common areas, a time out room, a medical room for the nurses to check patients and administer meds, and an observation room.
V was allowed to take her depakote for seizures, but any other behavior related meds were immediately discontinued and a period of "baseline" assessment began. As medical doctors, psychiatrists, behavioral psychologists, special education teachers, speech therapists, occupational therapists and nurses began a global evaluation of the possible causes for the maladaptive behaviors, a technician counted each behavior with a clicker, every moment the patient was awake. The technician would respond verbally to each behavior as they imagined a parent or teacher might do in the natural environment. "Stop.", "Don't do that.", was heard over and over by every technician assigned to a patient on the unit. The behavior data was collected and analyzed by the psychologist for patterns to identify the motivation and reinforcement of the the behavior. A protocol was designed by the psychologist to be tried out by the technician while the patient's response was monitored and recorded. Meanwhile a teacher and therapists continued to work with the patient, as if they were in school, and also to implement the protocol as they interacted with the patient. When the baseline period was over, the psychiatrist tried new medications, while effects, both positive and negative, were observed and documented. When the protocol was deemed complete, then it was time to bring the parents in for training on how to implement the protocol. For me this involved having to practice the protocol on V while being videotaped, several times on different occasions before she would be released back into my full time care.
This description of how the NBU works is a very quick and dirty overview of what happens. Spending time on the NBU, visiting your child, can at times be like a level of hell in Dante's Inferno. Remember, all the patients on the unit are there because of severe behavior issues that could not be resolved with less intensive interventions, and there were times that one patient could set off the others.
I spent the first couple of days on the unit with V, sleeping at the Ronald McDonald house that first night. When I went back to work, I traveled each evening to Baltimore, arriving around dinner time and stayed until V was sleeping in her bed. It was really important to me that V never feel abandoned in a strange place away from home and all of her familiar routines, so I bathed her each evening, put on her pajamas, brushed her hair and read to her until she fell asleep each night. I did this 4 days a week, and one day on the weekend, while her father or my mother came to see her on the 2 days a week that I did not. When the weather wasn't too bad, we went to Fells Point to walk and take rides on the water taxis over to the Inner Harbor. The time I spent on the NBU was difficult, but the things I saw there put some perspective on my own challenges. One little girl on the unit had scratched at her eyes until she blinded herself. Another little boy had a degenerative disease, and his father, who was a professional football player, traveled a much greater distance than I had to in order to visit his son, who was only going to get worse rather than better.
When V was asleep in her bed, I drove home from the NBU, at times drained and discouraged. For those 6 months, my whole life was work and the NBU, nothing else. So, when self pity got hold and started the spiral of negative thoughts, I told myself,"STOP!" Then I would start to count my blessings. The list of things in life to be thankful for and happy about was always so much longer the list of troubles, that I regained my strength each time. Sometimes the list held such simple things as the feel of warm laundry in my arms, fresh from the dryer on a really cold day. It may be reaching, but this habit has kept me going time and again.
I spent so much time on the NBU, that I befriended some of the nurses and went out with them a couple of times, socially. Most parents do not spend time visiting like I did, and that is not a judgement of them. But I remember one little girl who slept in the bed next to V. One night as I read to V at bedtime, the little girl started to cry. I asked her what was wrong and she said, "I wish my mother would come and see me like you do." Some families lived far away. People come to KKI from all over the world. Some patients came from group homes or institutions and had no family to visit them.
One of the best things that happened on the NBU was the night I overheard a parent talking to a technician about respite care. I didn't know anything about it and had never received any kind of support in my care of V from local agencies, but I was determined to find out more.
V had entered the NBU on New Years Eve and it was June before she was deemed ready to come home. The length of her stay was highly unusual, but the team felt she had been an exceptional challenge. Her protocol was elaborate and the prospect of implementing it in our home, alone, was overwhelming. One service that KKI provided was follow up by an out-patient behavior analyst who provided training and support at V's school for her teacher and aide. Everyone who spent time with V was supposed to be trained and on board to be consistent with the protocol.
I knew that I would need help. I made some calls and learned about a state initiative referred to as Return/Divert. The idea was to provide wrap around supports to families in order to keep children at home who were at risk of becoming institutionalized. The resource that I turned to for this help was the Collaboration Council of Montgomery County and I have posted a link to the website for this organization for your assistance. I arranged for the school system to refer V for consideration of these services and she was approved.
This was the beginning of respite care in our home for V, funded by state and county funds. It was what made it possible for V to remain in my home and in a local school, while I worked to support us.
Sunday, April 19, 2009
The Elementary School Years
When V was very small, she went to home-based day care centers when she was not in school or with family. During this time in her life, she wasn't so different from other children in her abilities that it caused a problem for caregivers. As she became older and larger, this was no longer true.
After school care that was designed for normal children was not equipped to meet V's needs. It became necessary to find people who could care for her in my home. Needless to say, that was more expensive than typical daycare options. The cost of this 1:1 care exhausted my savings pretty quickly.
After V had spent 3 years in the local elementary school, Delta decided to close my office and I had to make a choice to move to another part of the country and stay with the company or take a severence package and find something else to do. I was offered the option of moving back to Annapolis with my parents if I wanted to go back to school and pursue a teaching degree and a new career. I already had a bachelors degree in Human Development, and was able to find a Master's Certification Program in Education at the University of Maryland, in which I could complete 43 hours in 12 months and come out with an M.Ed and a teaching certification. So, I applied and was admitted to the program. I rented out my house, put my furniture in storage, and started school. This meant a transfer to a new school for V, and she was placed at Central Special in Edgewater,MD. Although it was an Anne Arundel county public program, it was not like the elementary school V had been attending where regular education and special education programs were in the same building. This school was structured more like Ivymount had been. No regular education classes existed in the building.
As this school continued to struggle with a behavior management plan without success, I learned of a place in Baltimore with an extraordinary reputation for helping children, especially those who had developmental disabilities and related behavioral problems. The principal of Central Special strongly encouraged me to look into the in-patient or out-patient program of The Kennedy Krieger Institute. I was very resistant to the idea at first. As time went on and I saw how V's behavior interfered with every aspect of her life, especially as it related to her school experience, I eventually agreed to an evaluation by the Kennedy Krieger Team.
By the time this happened, I had finished my master's degree and moved back to my own home in Montgomery County. V had been placed at Longview School upon our return to the county, rather than back in the elementary school where she had previously attended. It was another bad fit. The population of students at Longview were profoundly disabled and medically fragile, while V was low functioning, but more capable than the other students and she was physically healthy. Since she had her 1:1 classroom aide, she had a very individualized program. The physical environment of Longview was better for her than the elementary school because she was not overstimulated there, but she really had no peers to interact with. The county simply could not identify a really suitable placement.
While waiting for a nearby teaching opportunity to become available, I worked as a sales manager for a local travel agency. During this time, V was evaluated by KKI and deemed an appropriate candidate for the Neurobehavioral Unit (NBU) at their Broadway Campus in Baltimore. She was placed on a waiting list for an opening on the unit. Up to this point, V had recieved psychiatric treatment at KKI by Dr. Elaine Tierney, a very kind and dedicated doctor. Dr. Tierney prescribed Risperdal to alleviate some of the symptoms of the mood disorder that V seemed to have. It seemed to have a calming effect upon V, but also increased her appetite and weight. I adjusted my food preparation methods and we had it under control. Then, right before New Years, V cleared the NBU waiting list. This was the beginning of the most intense 6 months of my life.
After school care that was designed for normal children was not equipped to meet V's needs. It became necessary to find people who could care for her in my home. Needless to say, that was more expensive than typical daycare options. The cost of this 1:1 care exhausted my savings pretty quickly.
After V had spent 3 years in the local elementary school, Delta decided to close my office and I had to make a choice to move to another part of the country and stay with the company or take a severence package and find something else to do. I was offered the option of moving back to Annapolis with my parents if I wanted to go back to school and pursue a teaching degree and a new career. I already had a bachelors degree in Human Development, and was able to find a Master's Certification Program in Education at the University of Maryland, in which I could complete 43 hours in 12 months and come out with an M.Ed and a teaching certification. So, I applied and was admitted to the program. I rented out my house, put my furniture in storage, and started school. This meant a transfer to a new school for V, and she was placed at Central Special in Edgewater,MD. Although it was an Anne Arundel county public program, it was not like the elementary school V had been attending where regular education and special education programs were in the same building. This school was structured more like Ivymount had been. No regular education classes existed in the building.
As this school continued to struggle with a behavior management plan without success, I learned of a place in Baltimore with an extraordinary reputation for helping children, especially those who had developmental disabilities and related behavioral problems. The principal of Central Special strongly encouraged me to look into the in-patient or out-patient program of The Kennedy Krieger Institute. I was very resistant to the idea at first. As time went on and I saw how V's behavior interfered with every aspect of her life, especially as it related to her school experience, I eventually agreed to an evaluation by the Kennedy Krieger Team.
By the time this happened, I had finished my master's degree and moved back to my own home in Montgomery County. V had been placed at Longview School upon our return to the county, rather than back in the elementary school where she had previously attended. It was another bad fit. The population of students at Longview were profoundly disabled and medically fragile, while V was low functioning, but more capable than the other students and she was physically healthy. Since she had her 1:1 classroom aide, she had a very individualized program. The physical environment of Longview was better for her than the elementary school because she was not overstimulated there, but she really had no peers to interact with. The county simply could not identify a really suitable placement.
While waiting for a nearby teaching opportunity to become available, I worked as a sales manager for a local travel agency. During this time, V was evaluated by KKI and deemed an appropriate candidate for the Neurobehavioral Unit (NBU) at their Broadway Campus in Baltimore. She was placed on a waiting list for an opening on the unit. Up to this point, V had recieved psychiatric treatment at KKI by Dr. Elaine Tierney, a very kind and dedicated doctor. Dr. Tierney prescribed Risperdal to alleviate some of the symptoms of the mood disorder that V seemed to have. It seemed to have a calming effect upon V, but also increased her appetite and weight. I adjusted my food preparation methods and we had it under control. Then, right before New Years, V cleared the NBU waiting list. This was the beginning of the most intense 6 months of my life.
Early Identification and Intervention
I became a single parent when V was about 6 months old as a result of separation from my first husband. At that point in time, we did not know that V was going to have any developmental issues. She was a normal, active and alert baby, meeting all the developmental milestones on time. The first sign of trouble I saw was that she had a lot of difficulty taking food from a spoon instead of bottle. Then I noticed that she wasn't experimenting with her toys, only putting them in her mouth or banging them against something. I also noticed that she wasn't experimenting with different vocal sounds and she wasn't crawling or walking. The pediatrician was not concerned, but our family practitioner listened to my worries and sent us to Child Find for an evaluation when V was about 11 months old. At Child Find, delays in cognition, speech, and motor skills were identified and we were provided with a home visit once a week by a special educator in Anne Arundel County, where I had gone to live briefly following my separation. When I returned to my home in Montgomery County, when V was about 14 months old, she was enrolled in the PEP (PreSchool Education Program) for infants.
The teacher began to speak of Sensory Integration Disorder. V suffered from tactile and auditory defensiveness. She didn't want to touch things with her hands and, instead, grabbed my wrist and used my hand as a tool to pick things up for her. She didn't like to walk on a variety of surfaces in bare feet. The sound of a cracking ice tray or rattle of a crumpled plastic bag could send her into hysterics. When she began walking, she didn't seem to know when her feet were going to hit the ground, making her steps awkward and heavy.
Medical testing to determine the cause of V's problems began at Children's Hospital in the District of Columbia. Blood tests and genetic testing revealed nothing out of the ordinary. An MRI of the brain did not indicate any abnormality in the structure of the brain. No explanation could be provided for any of V's troubles. The trips to D.C., the long periods spent in waiting rooms to see the doctors, and the insensitivity of the employees performing the tests on my baby made this experience for me nightmarish. I have heard glowing reviews of Childrens Hospital, but my experience with the institution was anything but glowing. The insurance forms that they gave me were not coded the way that my insurance company required, and so it was a year of going back and forth with the hospital, asking them for the necessary insurance codes and instead of getting the necessary information so that insurance would pay, the hospital harassed me to pay the bills without any way of getting reimbursed. Just the additional stress that I did not need.
Meanwhile, the need to take the baby for tests and appointments and to be present two days a week for participation in the PEP program was hurting my job presence. Delta put me on 6 months probation for missed work time, and I had to go six months without missing another day or risk losing my job. I didn't miss a day but I did go to work with the flu and a fever of 104 degrees. I am sure that many others missed work because of that, but when you are a single parent you do what you have to do. To the credit of the management, when I explained that I needed to be available to take V to PEP, they created a schedule for me that no one else had, just to make it possible for me to help V and not miss work. For that I am forever grateful.
V's PEP teacher recommended a placement at a private school in Rockville, called Ivymount, where she could receive intensive help with her sensory problems. The following year, V entered the toddler program at Ivymount and remained there for 3 years while she received the services of speech therapists, occupational therapists and physical therapists. She attended 3 half days a week the first year and then 5 days a week the next year when she entered the preschool program at Ivymount School. The work that they did with V made such a difference to reduce her tactile defensiveness. I am very thankful that V had those 3 years at Ivymount and, if I had it to do over, I would not have transferred her to a public community-based program when she turned 5, as was suggested.
I have to credit the staff at Ivymount for bringing V's petit mal seizures to my attention when she was 3 years old. These seizures can look like V is spacing out, but she is not, as the EEG will confirm. Still, it is hard to tell the difference between a daydreaming child and one having this type of seizure. Medication trials to treat the seizures were distressing. The first and second types of medication that the neurologist prescribed, caused V to stumble about as if she were drunk and they did not stop the seizures. The third medication worked without side effects after a few adjustments to dosages, and we have used Depakote to successfully control the seizures ever since. About the same time, the teacher at Ivymount reported the beginning of tantrum behavior at school.
This is when V's first behavior modification plan was put in place. At home, this meant the strictest of discipline, in terms of never giving in to tantrums. In its simplest form, the plan meant not ever reinforcing tantrums by rewarding them. It meant choosing my battles carefully because I was told that any demand I made on V would have to be enforced regardless of how strongly she reacted, and any time I said no to her when she wanted something, I would have to hold firm on that no as well.
In the community based program, the classroom was in a regular elementary school and there were more children in a classroom than at Ivymount. The bottom line for V was that she became very easily overstimulated by the activities and sounds of the larger class and the school building as a whole, not to mention the community outings. The teacher was wonderful, but the environment was not a good match for my daughter.
to be continued....
The teacher began to speak of Sensory Integration Disorder. V suffered from tactile and auditory defensiveness. She didn't want to touch things with her hands and, instead, grabbed my wrist and used my hand as a tool to pick things up for her. She didn't like to walk on a variety of surfaces in bare feet. The sound of a cracking ice tray or rattle of a crumpled plastic bag could send her into hysterics. When she began walking, she didn't seem to know when her feet were going to hit the ground, making her steps awkward and heavy.
Medical testing to determine the cause of V's problems began at Children's Hospital in the District of Columbia. Blood tests and genetic testing revealed nothing out of the ordinary. An MRI of the brain did not indicate any abnormality in the structure of the brain. No explanation could be provided for any of V's troubles. The trips to D.C., the long periods spent in waiting rooms to see the doctors, and the insensitivity of the employees performing the tests on my baby made this experience for me nightmarish. I have heard glowing reviews of Childrens Hospital, but my experience with the institution was anything but glowing. The insurance forms that they gave me were not coded the way that my insurance company required, and so it was a year of going back and forth with the hospital, asking them for the necessary insurance codes and instead of getting the necessary information so that insurance would pay, the hospital harassed me to pay the bills without any way of getting reimbursed. Just the additional stress that I did not need.
Meanwhile, the need to take the baby for tests and appointments and to be present two days a week for participation in the PEP program was hurting my job presence. Delta put me on 6 months probation for missed work time, and I had to go six months without missing another day or risk losing my job. I didn't miss a day but I did go to work with the flu and a fever of 104 degrees. I am sure that many others missed work because of that, but when you are a single parent you do what you have to do. To the credit of the management, when I explained that I needed to be available to take V to PEP, they created a schedule for me that no one else had, just to make it possible for me to help V and not miss work. For that I am forever grateful.
V's PEP teacher recommended a placement at a private school in Rockville, called Ivymount, where she could receive intensive help with her sensory problems. The following year, V entered the toddler program at Ivymount and remained there for 3 years while she received the services of speech therapists, occupational therapists and physical therapists. She attended 3 half days a week the first year and then 5 days a week the next year when she entered the preschool program at Ivymount School. The work that they did with V made such a difference to reduce her tactile defensiveness. I am very thankful that V had those 3 years at Ivymount and, if I had it to do over, I would not have transferred her to a public community-based program when she turned 5, as was suggested.
I have to credit the staff at Ivymount for bringing V's petit mal seizures to my attention when she was 3 years old. These seizures can look like V is spacing out, but she is not, as the EEG will confirm. Still, it is hard to tell the difference between a daydreaming child and one having this type of seizure. Medication trials to treat the seizures were distressing. The first and second types of medication that the neurologist prescribed, caused V to stumble about as if she were drunk and they did not stop the seizures. The third medication worked without side effects after a few adjustments to dosages, and we have used Depakote to successfully control the seizures ever since. About the same time, the teacher at Ivymount reported the beginning of tantrum behavior at school.
This is when V's first behavior modification plan was put in place. At home, this meant the strictest of discipline, in terms of never giving in to tantrums. In its simplest form, the plan meant not ever reinforcing tantrums by rewarding them. It meant choosing my battles carefully because I was told that any demand I made on V would have to be enforced regardless of how strongly she reacted, and any time I said no to her when she wanted something, I would have to hold firm on that no as well.
In the community based program, the classroom was in a regular elementary school and there were more children in a classroom than at Ivymount. The bottom line for V was that she became very easily overstimulated by the activities and sounds of the larger class and the school building as a whole, not to mention the community outings. The teacher was wonderful, but the environment was not a good match for my daughter.
to be continued....
The Second Challenge: Safety, Part 3
Night Time
V loves hot drinks. She loves hot tea, coffee, and cocoa and calls them all "Hot". I figure out the difference between them depending on whether she is pointing at the tea kettle, the coffee pot, or pulling the powdered chocolate out of the pantry. Many times she watched me turn on the stove to heat the water in the kettle for a cup of tea. She watched as I took out a tea bag and brought out the sugar bowl and a spoon. Then one night as I slept, I heard a noise downstairs and looked at the clock beside my bed. It was about midnight. I got out of bed and went to the top of the stairs where I could see that the light was on in my kitchen. Curious, I went down stairs and found V sitting at the kitchen table with a coloring book and crayons, happily coloring as she patiently waited for the water to boil. There on my kitchen counter sat a tea bag, the sugar bowl, a mug and a spoon. I looked at my stove and realized how close to disaster we had come. V had turned on the knob to heat the oven instead of the burner, thank goodness. A dishtowel lay carelessly across the counter, it's edge resting on one of the stove burners and I could see how easily a fire would have started in my kitchen if she had turned the knob for the burner instead of the oven, as she had meant to. That is not even considering the real possibility of a serious burn if the water had boiled and she had attempted to pour it into the mug. V had not learned when to stop pouring when her cup is full and she still hasn't. I put everything away and turned off the oven, thankful that disaster had been avoided, and a little bit impressed that she had learned all the steps to making a cup a tea, and took V back to bed. The next day I unscrewed her door knob and replaced it so that the lock faced out into the hall instead of into her bedroom, and I locked her bedroom door at bedtime. I have done so ever since, to prevent her from wandering the house while I sleep and getting into danger. If she gets up in the night, I hear her over the baby monitor that I use, and she will knock on her door to let me know that I am wanted for help.
I know of a family who has hired a caregiver to spend the night in their son's room to keep him safe while the family sleeps at night. I have visited group homes where there are night shift staff that sit in the hall watching video monitors of the clients rooms to ensure their safety. When our kitchen incident occured, I was a single mom, working full time and I did not have the resources to hire someone to watch over V at night, so my solution was practical and affordable for me.
V loves hot drinks. She loves hot tea, coffee, and cocoa and calls them all "Hot". I figure out the difference between them depending on whether she is pointing at the tea kettle, the coffee pot, or pulling the powdered chocolate out of the pantry. Many times she watched me turn on the stove to heat the water in the kettle for a cup of tea. She watched as I took out a tea bag and brought out the sugar bowl and a spoon. Then one night as I slept, I heard a noise downstairs and looked at the clock beside my bed. It was about midnight. I got out of bed and went to the top of the stairs where I could see that the light was on in my kitchen. Curious, I went down stairs and found V sitting at the kitchen table with a coloring book and crayons, happily coloring as she patiently waited for the water to boil. There on my kitchen counter sat a tea bag, the sugar bowl, a mug and a spoon. I looked at my stove and realized how close to disaster we had come. V had turned on the knob to heat the oven instead of the burner, thank goodness. A dishtowel lay carelessly across the counter, it's edge resting on one of the stove burners and I could see how easily a fire would have started in my kitchen if she had turned the knob for the burner instead of the oven, as she had meant to. That is not even considering the real possibility of a serious burn if the water had boiled and she had attempted to pour it into the mug. V had not learned when to stop pouring when her cup is full and she still hasn't. I put everything away and turned off the oven, thankful that disaster had been avoided, and a little bit impressed that she had learned all the steps to making a cup a tea, and took V back to bed. The next day I unscrewed her door knob and replaced it so that the lock faced out into the hall instead of into her bedroom, and I locked her bedroom door at bedtime. I have done so ever since, to prevent her from wandering the house while I sleep and getting into danger. If she gets up in the night, I hear her over the baby monitor that I use, and she will knock on her door to let me know that I am wanted for help.
I know of a family who has hired a caregiver to spend the night in their son's room to keep him safe while the family sleeps at night. I have visited group homes where there are night shift staff that sit in the hall watching video monitors of the clients rooms to ensure their safety. When our kitchen incident occured, I was a single mom, working full time and I did not have the resources to hire someone to watch over V at night, so my solution was practical and affordable for me.
Saturday, April 18, 2009
The Second Challenge: Safety ,Part 2
Public Transportation
For some people using the New Directions Waiver, the most economical transportation option is Metro Access and DDA will allow waiver funds to be applied to this cost. It operates like a taxi service with handicap accessible vans. For V, having to wait when she is ready to leave a community destination could put her support staff in a difficult position. When V is ready to go, she is ready to go and will begin walking if no vehicle is available. Physical restraint tends to escalate any agitation on her part, and there is just no reasoning with her if she is determined to do something. A private vehicle that is ready to go when she is, for V, is the best and safest option for her, for the staff and for the public.
We have taken a successful subway train ride and will probably try that again at some point, but there is no subway stop near our home.
Safety in the Home
Adaptations have been made to our home that have created a safe place for V to relax and play. Around the age of 15, V escalated her physical expressions of frustration to a level that caused me such worry for her personal safety that I considered placement at a residential school for her. Glass topped coffee tables and dining room tables were intentionally tipped over by V and the large chest of drawers in her bedroom were pulled over, with nightstands being rolled end over end across the room. A medication change to Topamax gave nearly miraculous relief from this behavior for a couple of months and I began to address the furniture issue by bolting the chest of drawers to the wall so that she could not pull it over onto herself. One of the scarier things that she wanted to do was to shake the t.v. and pull it toward herself when she became emotional about a movie that was on. Close supervision anytime the t.v. was turned on became very important for her physical safety. She began to pull the drawers out of the entertainment center and throw them or pull them out just enough to climb up on them, like stairs, risking a dangerous tip over of the entire unit.
Eventually, I found a small local custom furniture design center, Sarkissian Interiors in Gaithersburg, MD. Mr. Sarkissian and I sat down and I described to him a custom wall unit with 3 parts. The first part needed to house a T.V., VCR and related entertainment equipment, with the T.V. protected by a heavy duty plexiglass door, that could be pounded on and not break. The storage space needed to be lockable with keys, but no handles to pull on or step on, and the entire unit needed to be strong enough to handle kicking without damage. The second unit needed the same locking plexiglass door to house a computer monitor and a locking drawer for the keyboard and mouse. It needed a roll out bench seat below the computer desk, so that it could not be thrown or tipped over, and that could be pushed under the desk and locked in place so that it could not be climbed on. Finally, the third part of the system was a simple work desk with the same locking roll out bench seat. Mr. Sarkissian took it step further, and made the seat cushions out of a removable vinyl pad that could be wiped off or removed for cleaning, and that attached to the bench with velcro. This custom entertainment system works beautifully and addresses all of our safety concerns. Mr. Sarkissian has the plans for our system and could reproduce any or all of the 3 components for anyone who wanted one. Mr. Sarkissian had designed the furnishings for the pychiatric ward of Georgetown Hospital, and so I had confidence that he could help me with my project, and he did. The one part of the system that we don't use very much is the work desk. V prefers to work on a large folding table that we bring into her room for the purpose of her artwork. Because the workdesk has closed in sides, it is hard for a caregiver to sit next to V and help her with anything that she is doing. If I were to make a design change to the desk, it would be to open up the sides of the desk.
As for other features of the playroom that we built for V, the only light fixture is on the ceiling, out of reach. The closets and bathroom doors can be locked with keys, so that no destruction can occur if she needs to be left alone for a few minutes to calm herself. Walls are covered with construction paper artwork that V has created and if she pulls it down when she is upset, it can be thrown away and replaced with new artwork that she creates. The floor is washable tile, easily cleaned if glue or tempera paint spills, and Ikea couch cushion covers are all removable and washable. This is V's space, though she likes to join me in the evening on our family room couch for snuggle time before bed. Having a safe space for V allows our family to coexist with less stress for everyone. I realize that not everyone can go to the lengths that we have, but for us, this works.
For some people using the New Directions Waiver, the most economical transportation option is Metro Access and DDA will allow waiver funds to be applied to this cost. It operates like a taxi service with handicap accessible vans. For V, having to wait when she is ready to leave a community destination could put her support staff in a difficult position. When V is ready to go, she is ready to go and will begin walking if no vehicle is available. Physical restraint tends to escalate any agitation on her part, and there is just no reasoning with her if she is determined to do something. A private vehicle that is ready to go when she is, for V, is the best and safest option for her, for the staff and for the public.
We have taken a successful subway train ride and will probably try that again at some point, but there is no subway stop near our home.
Safety in the Home
Adaptations have been made to our home that have created a safe place for V to relax and play. Around the age of 15, V escalated her physical expressions of frustration to a level that caused me such worry for her personal safety that I considered placement at a residential school for her. Glass topped coffee tables and dining room tables were intentionally tipped over by V and the large chest of drawers in her bedroom were pulled over, with nightstands being rolled end over end across the room. A medication change to Topamax gave nearly miraculous relief from this behavior for a couple of months and I began to address the furniture issue by bolting the chest of drawers to the wall so that she could not pull it over onto herself. One of the scarier things that she wanted to do was to shake the t.v. and pull it toward herself when she became emotional about a movie that was on. Close supervision anytime the t.v. was turned on became very important for her physical safety. She began to pull the drawers out of the entertainment center and throw them or pull them out just enough to climb up on them, like stairs, risking a dangerous tip over of the entire unit.
Eventually, I found a small local custom furniture design center, Sarkissian Interiors in Gaithersburg, MD. Mr. Sarkissian and I sat down and I described to him a custom wall unit with 3 parts. The first part needed to house a T.V., VCR and related entertainment equipment, with the T.V. protected by a heavy duty plexiglass door, that could be pounded on and not break. The storage space needed to be lockable with keys, but no handles to pull on or step on, and the entire unit needed to be strong enough to handle kicking without damage. The second unit needed the same locking plexiglass door to house a computer monitor and a locking drawer for the keyboard and mouse. It needed a roll out bench seat below the computer desk, so that it could not be thrown or tipped over, and that could be pushed under the desk and locked in place so that it could not be climbed on. Finally, the third part of the system was a simple work desk with the same locking roll out bench seat. Mr. Sarkissian took it step further, and made the seat cushions out of a removable vinyl pad that could be wiped off or removed for cleaning, and that attached to the bench with velcro. This custom entertainment system works beautifully and addresses all of our safety concerns. Mr. Sarkissian has the plans for our system and could reproduce any or all of the 3 components for anyone who wanted one. Mr. Sarkissian had designed the furnishings for the pychiatric ward of Georgetown Hospital, and so I had confidence that he could help me with my project, and he did. The one part of the system that we don't use very much is the work desk. V prefers to work on a large folding table that we bring into her room for the purpose of her artwork. Because the workdesk has closed in sides, it is hard for a caregiver to sit next to V and help her with anything that she is doing. If I were to make a design change to the desk, it would be to open up the sides of the desk.
As for other features of the playroom that we built for V, the only light fixture is on the ceiling, out of reach. The closets and bathroom doors can be locked with keys, so that no destruction can occur if she needs to be left alone for a few minutes to calm herself. Walls are covered with construction paper artwork that V has created and if she pulls it down when she is upset, it can be thrown away and replaced with new artwork that she creates. The floor is washable tile, easily cleaned if glue or tempera paint spills, and Ikea couch cushion covers are all removable and washable. This is V's space, though she likes to join me in the evening on our family room couch for snuggle time before bed. Having a safe space for V allows our family to coexist with less stress for everyone. I realize that not everyone can go to the lengths that we have, but for us, this works.
Friday, April 17, 2009
The Second Challenge: Safety
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...
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...
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.
Why we chose a self directed program
When V was in school, her psychologist and teachers described her as self directed. She had her own ideas about how she should be spending her time and frequently those ideas did not mesh with the schedule that her teachers had in mind for her. There seemed to be such a strong need to be in control of where, when and for how long she would participate in a particular activity. Although V had little in the way of communication skills, her tantrum and refusal to comply with directions seemed to scream, "Stop telling me what to do every minute of my day! It's my life and I want a say in it!"
How can someone with about 20 words, no handwriting, no sign language and and minimal working knowledge of picture symbols have a say in their life? She shows her caregivers what she likes by her smiles, laughter and willing participation. She shows us what she doesn't like by refusing to participate. She tells us she has had enough by walking away. She needs someone in her life to care enough about what she wants to observe and report on those things that give her life meaning and joy. That person is me, her mother.
When school was about to come to an end, when she was 20 years old, we had to choose between various traditional programs that would include supported employment and a group home, or a pilot program offered by the state of Maryland called The New Directions Waiver. The New Directions Waiver allowed disabled people in the state to direct their own adult program using the same budget that the traditional agencies would receive. I was advised that V's non-compliant nature made her a poor fit for those traditional programs, but that we had this great alternative. So, here we are, and V has a self directed life now.
How can someone with about 20 words, no handwriting, no sign language and and minimal working knowledge of picture symbols have a say in their life? She shows her caregivers what she likes by her smiles, laughter and willing participation. She shows us what she doesn't like by refusing to participate. She tells us she has had enough by walking away. She needs someone in her life to care enough about what she wants to observe and report on those things that give her life meaning and joy. That person is me, her mother.
When school was about to come to an end, when she was 20 years old, we had to choose between various traditional programs that would include supported employment and a group home, or a pilot program offered by the state of Maryland called The New Directions Waiver. The New Directions Waiver allowed disabled people in the state to direct their own adult program using the same budget that the traditional agencies would receive. I was advised that V's non-compliant nature made her a poor fit for those traditional programs, but that we had this great alternative. So, here we are, and V has a self directed life now.
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