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February 8, 2003
WHAT DOES AUTISM MEAN?
I feel that I need to clarify a few things. If you’ve been to my TTM board lately, you know what I’m talking about and I’ll leave it at that. First of all, I do not go around waving a banner declaring that Jaida has autism. It is by no means a secret but I don’t bring it up unless I have to. Usually that is when I fill out paperwork at doctor’s appointments or answer the question, “Is she taking any medications?” When healthcare professionals learn that Jaida takes Lamictal, if they don’t know what it’s used for they will ask. I then have to say it’s for seizure control. Inevitably the next question is, “When was her last seizure?” This is the part where it gets tricky. If I say we don’t know and that we only discovered the seizures after she had an EEG, that is sometimes all the explanation they need. If I get the look that says further explanation is needed or they keep asking questions, I tell them we had the EEG after she was diagnosed with autism spectrum disorder. That will end it every time.
Autism is reaching near epidemic proportions in this country. What’s even more troublesome is that doctors and scientists don’t have any idea what to do about it. To give you some idea why this is such a hard thing to conquer, let me quote from the book “Facing Autism” by Lynn M. Hamilton. “Autism is actually just one classification under the umbrella of Pervasive Developmental Disorders, which also includes Asperger’s Syndrome, Rett’s, Childhood Disintegrative Disorder and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). Unlike other diseases, which can be diagnosed by their physiological symptoms and medical testing, autism is determined by how closely the child’s condition fits certain criteria. Since children can vary so widely within these criteria, many professionals have recently begun using the term Autism Spectrum Disorder to emphasize the variance. Those who are affected with ASD fit a number of descriptions in several categories, so labeling a child as having a particular disorder within this spectrum is highly subjective and far from an exact science. One doctor may label a child with autism while another may categorize the child in the PDD-NOS range. However, no matter which label a child receives within the spectrum, the treatment strategies are much the same.”
Lastly, I thought I should define autism so that my readers can understand it a little better. It is a puzzling affliction but progress is being made in solving the mystery. The Diagnostic and Statistical Manual of Mental Disorders states that autism is characterized by “markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interests.” Usually, the first signs are a person’s speech or the lack thereof. To quote Mrs. Hamilton’s book again, “In fact, most children exhibit one or two of these traits, so these signs of autism can be easily overlooked. However, with autism, the traits are more numerous and severe. For example, many children throw tantrums when they don’t get what they want or a routine is broken, but a child with autism may have more extreme or longer-lasting tantrums.”
When I began researching autism, I read two of the best books ever written from the personal perspective. As I mentioned before, “Facing Autism” by Lynn M. Hamilton is excellent if you want a vast overview of each aspect of treatment as well as her son’s story of recovery. Mrs. Hamilton and her husband used multiple therapies including diet and supplements to recover their son Ryan. Another book that has been around longer is “Let Me Hear Your Voice” by Catherine Maurice. Mrs. Maurice does not believe in the diet or any biological treatments for autism. She tells the painful account of recovering not one, but two of her three children from autism with a therapy called Applied Behavior Analysis. Both books give excellent descriptions of the behaviors associated with autism and the day to day struggles that parents of children with autism must get through. If you want to read more, go to www.autism-society.org or www.autismresearchinstitute.com for numerous links and articles.
JAROD GOES TO SCHOOL
This past Wednesday was Jarod’s first day at school. My worries about his readiness were unwarranted because my baby jumped right in and never looked back. He absolutely LOVES it. On the day we visited, his teacher Miss Dana was out with one of her own children. When she saw Jarod for the first time, she exclaimed over how cute he was and reached out to him. Jarod held out his arms and let her pick him up and over the gate in the doorway. Dana put him down and took off his coat. She gave him a toy phone and he forgot I was even there. I talked with another teacher and the director for a few minutes while I watched from the hallway. I peeped around the door one last time and Jarod was playing happily. I knew he was in the right place. When I picked him up he was glad to see me but it was clear he had been having fun. He never cried once!
On Thursday, there were a lot of absences and they combined the older babies and Jarod’s room. Dana said Beth came in and saw Jarod and they acted like long-lost relatives. I had no idea her children went to the school. That makes me feel even better about this place than before. Beth told Dana how happy she was that Jarod was coming there and she thought it would be great for him. I’m so proud of him; I just don’t know what to do. Just like every other person that Jarod meets, Dana is smitten with him already. On Friday when I picked him up, she was reading a story to the group. I found it funny that Jarod was in her lap and everyone else was sitting nearby. Dana told me the first day when I picked him up that he’s as smart as a whip. She said she was an education major and Jarod was very advanced for his age. He used his words and talked to her a lot during the day. It looks like I made the right choice for him.
UPDATE ON THE SCHOOL SYSTEM
I’m very satisfied with the speech therapy Jaida is getting from the school system. Suzanne is great and she plans her sessions carefully. Unfortunately, she has had a lot of personal problems lately and we’ve missed some sessions due to her absences. I totally understand but it is frustrating to say the least. Suzanne has been trying to get some type of survey for me to fill out for weeks now. She can never remember the name of it but it is designed to measure the level of a child’s autism I think. Mrs. L, her contact person at the county has even more personal problems and she is never at work. Apparently, she is the one that ordered the survey paperwork and the only one that knows the status of it.
On a positive note, the letter I wrote the state director got some attention at the county level. I made sure to send the county director a copy and she sent me a nice letter apologizing for the problems I’ve had establishing communication with her office. She assured me that was doing everything she could to make sure we get the right services and classification for Jaida. I got the impression she was sincere and I think I *might* cut her some slack. I realize she has a hard job but that’s no excuse. I had to write her twice and call three times to get that IEP scheduled in December. That is just plain ridiculous.
I asked Suzanne’s opinion about putting Jaida in public kindergarten next year. She said she thought it might be okay. I mentioned I had applied for a spot in the coveted magnet program at a school near my office. Suzanne said that Mrs. L had mentioned another school that had teachers with experience with children with autism. Of course it’s out of our zone and halfway across town. When the system makes a placement, they are responsible for transportation. I’m certain that means a bus that I will have to wake Jaida up even earlier to catch. But I won’t count my chickens before they hatch. We’ll worry about that when the time comes.
HOW AM I DOING?
There is no need to worry about me. When I’m upset or in a bad mood, nothing cheers me up like getting my hair done. On Friday night that is just what I did. My stylist just opened his own salon and it is beautiful. He had some light jazz playing on the surround sound and we laughed and joked around. He went to school with my brother Chris and I went to school with his wife. They are expecting a baby girl in June and I ribbed him about his declaration that they weren’t having any kids. I told him the story of Lambchop’s unexpected conception and the big V and he was blown away by the timing just like everyone else that hears the story.
When he asked how I wanted my hair, I had an urge to feel glamorous. I told him to give me a light roller wrap and trim up my layers. Two hours later, I left looking like a black Charlie’s Angel. Lamar can style and cut hair like nobody’s business and he did a great job. Every natural highlight I own was shimmering and my hair was bouncin’ and behavin’. Of course, this fantastic do only lasted as long as I didn’t sleep lying down. So I awoke this morning feeling a little like Cinderella after the ball. It was worth it though. The good mood from last night continued as I grocery shopped this morning and pretended to be a Breck girl. I should get my hair done before our next IEP. I can go in there and kick butt and take names with the attitude I get from feeling glamorous! Well, as you can see my sense of humor is intact as well as my emotions. Thanks for all the support on my board and please know I appreciate all of my readers and friends!
Until next time,
Kim, Jaida, Jarod & Lambchop
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