Today I posted a new link to a company that solved a problem that has come up a couple of times over the years. Buck and Buck is an online store that sells clothing for residents of nursing homes, and all of the models are quite elderly. However, I have found that my daughter has shared some of the behavioral issues that are also associated with the behavior of patients with alzheimers, including disrobing at inappropriate times. This has always been the expression of frustration when there is nothing else available on which to physically act out that frustration. Buck and Buck sell jumpsuits that zip up the back and are made from the same material as a soft, warm sweatsuit. I found that by purchasing several of these jumpsuits and having her wear them for a while, she eventually learned that removing her clothing was not an option and stopped trying. Then, we were able to resume the use of her normal clothing. Under ordinary circumstances I buy clothing for V that can be most easily put on and taken off independently by her, but when the disrobing behavior escalates, the jumpsuits preserve her dignity in public and extinguishes the behavior without the need to physically block it by anyone. We all know that the less attention that is given to a behavior, the sooner it stops, and these products hold up to a lot of pulling without tearing. I tried some other products, but they tore at the seams when she pulled on them and didn't hold up well when laundered.
If your teenage or adult child has this problem, here is one solution to try that worked for me.
Do you have trouble taking your adult child into clothing store dressing rooms to try on outfits? Well, did you know that Lands End has an online store with a "virtual Model"? All you have to do is take your child's measurements and type them into the program. The program will show you what the outfit will look like on your child's body type and what sizes you should buy. So, you have an option to buying clothes, trying them on your child when you get home, and returning items that don't fit.
Need shoes that your child can put on and take off easily, but won't fall off when you don't want them to? Easy Spirit has a product that has been great for V. It is a suede shoe, like a sneaker but no fasteners or laces of any kind. It is very soft and doesn't leave blisters, even the first time it is worn and it comes in many colors.
Those are a few solutions that I have found. Please post the solutions that you have found!
Tuesday, May 5, 2009
Thursday, April 23, 2009
The Marathon: Providing for a Special Needs Child
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."
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."
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....
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