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....