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.
Sunday, April 19, 2009
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.
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