I had suspected since he was 2 ½ - 3 years old that Caleb was unlike other children. His vocabulary was limited. He could speak when urged to but it was nearly impossible to carry a conversation with him. I would sit by his bed at bedtime and talk to him and he would continue to play with a toy or stuffed animal, seemingly oblivious to the fact that there was anyone else in the room. The tears flowed because I knew he was inside his own little world and I didn't know how to become a part of that world.
I mentioned autism a few times but no one else saw what I was seeing. Our pediatrician, (a wonderful man whom I greatly respect) saw him only a few times a year and often only when he wasn't feeling well, suggested more interaction with children his own age. Reluctantly, I enrolled him in our local Head Start program. His teacher was a gentle, loving woman who went above and beyond her role as teacher to work with Caleb. She was amazed at his knowledge of letters and numbers but concerned by his limited motor skills and social skills. He would often play along side the other children but never actually with the other children.
It was during this time period that others began to agree with me that his speech was not at the same level as his peers. I took him to have his hearing tested and the technician remarked that she couldn't even see his eardrum for impacted wax. It was quite an ordeal to get the wax removed. One of the doctors was trying to dig around in his ear and Caleb kept screaming and pulling away. The doctor became impatient and said, "You need to communicate to him that he needs to sit still or else were not going to be able to help him!" I burst out in tears and exclaimed, "I can't communicate with him, thats why were here!" The doctor left the room and a different doctor came in. He suggested we use drops to soften the wax and then try again in a week. After the wax had been removed, the hearing test was done but was inconclusive. The hope was that the wax had impaired his hearing and that now he would begin to hear and speak as he should. It was suggested that we seek the help of a speech pathologist.
When the time came, I took him to the elementary school to have him tested for Kindergarten. I was sure they would see a problem and he wouldn't be allowed to register for classes in the fall. The testing was one on one and he did well with the first two sections. By the time we reached the third section he had become bored with the process. However, to my surprise, they enrolled him in classes with the suggestion that we work on cutting, writing, and sitting still.
We went for orientation, met with his teacher, and explored his classroom and he began classes as everyone else his age. At first he appeared to be doing well. As the setting shifted from songs and play type learning to writing we began to see more difficulties. His teacher, a lovely, tender hearted lady, would allow him to sit or stand near her desk while he worked and would prompt him to continue. If he stayed at the table with the other children the work would not get done. I asked about the speech pathologist working with him. When she tested him, again it was a one on one setting, he did well. He liked Mrs. Clark and enjoyed spending time with her. (I give her a good deal of credit - she went out of her way, beyond her job description, to help us find a way to help Caleb. She was pivotal in securing the diagnosis we now have.) However, she was limited to the amount of time she could spend with him because she was obligated to those who had diagnosed, or pronounced difficulties, or an IEP (Individualized Education Plan). While Caleb scored well on his report card and could have gone on to 1st grade, after several parent teacher conferences and much prayer, we decided to hold him back in Kindergarten for an additional year. The common consensus was that he wasn't mature enough for 1st grade and that he wasn't ready for the increased work load.
It was during his second year of kindergarten, with a different teacher (so he wouldn't feel so much like he was repeating the same grade) that I finally got the nerve to push forward with my suspicion on autism. I met with the speech pathologist and with the intervention specialist, and many times with his teacher. I contacted our insurance company to see if the testing would be covered - it was not. I adjusted my budget and paid for the visit myself. Before the appointment, the doctor's office sent me a form to fill out, a questionnaire about my son. I made copies and took them to school. I asked his current teacher, the prior year's teacher, the speech pathologist and the music teacher to each complete the form. That way the doctor was getting input from each of us and it wasn't just the ranting of a paranoid mother.
We spent a good part of the afternoon with the psychologist. She talked with Caleb, and with me. I allowed him to be himself. He wasn't jumping on the furniture or anything, but I intentionally didn't make him sit quietly. I wanted her to see him as he was. She looked over the papers from school, as well as his report card. She played with him and then asked me a series of questions. After the questions she shared with me what she saw, and the consistencies in the areas mentioned on the questionnaires. She then gave me her diagnosis and explained how she came to that diagnosis and where we would go from there. There were many mixed emotions. I felt vindicated, because I had known all along that he needed more than he was getting. I felt overwhelmed at the idea of having a child within the autism spectrum. I felt afraid because I knew absolutely nothing about the disorder with which he had been diagnosed.
I had never heard of Asperger Syndrome before. I set off to our local library to read everything I could find on the subject. I sat down with my pen in hand to record every title. The computer searched the library catalogue and came back with a total of one book. Not one in each library location - one book among all of the locations! I then searched for books on high functioning autism. I found a few more but most of them were outdated. (Since then several titles have been added as community awareness has increased.)
Frustrated at the lack of resources I began looking for resources from a more personal perspective. I found a support group in Portsmouth and one in Gallia County - each about an hour drive one way from where I live. Not really an option with four children and a husband who works the midnight shift. I also found a wonderful support network in Huntington, WV. The problem was that many of their families were dealing with severe autism. My son has virtually no problems compared to what they were discussing. I felt as though I had nothing to contribute and very little with which I could identify.
I was sure that there had to be at least a few other families in Lawrence County who were also looking for a support group. I sent flyers to the local schools and got no response for several weeks. Then finally one mother did call. At last, I knew I wasn't alone. From there I sent flyers to area pediatricians and psychologists and have begun meeting once a month. The first few meetings I enjoyed the peace and quiet of spending some time to myself. After a year we had 22 families on our mailing list and get phone calls from new families nearly every month.
Hopefully, with the help of this site, we'll be able to get the word out so that when you, or someone else, begin looking for answers there will be someone close by who understands.
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