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October 30, 2002
09/08/02 The wheels of change have been set into motion
I was so upset about the way the IEP review meeting went, I went back to work and started on a scathing letter. I decided to use my connections (something I abhor) to try and bring about change. Since I live in “Good ‘ol Boy” land, I figured it would be simple. One third of the people that work in state government in Alabama are there because they know somebody. A third of the time, they don’t have the right credentials or qualifications. I thought it was high time I got something done because of “who you know” like everybody else.
I typed as fast as I could, not sure when or if my in-laws would show up any second. I had recounted the story to all the people in the office and Steve. They saw I was on a mission and they stayed out of my way. I wrote from my gut. I could barely control my contempt for the injustices of our backwards system. I had to stop a few times to keep my emotions in check. I didn’t get very far, so I saved what I had on a disk to finish later. That night after everybody was asleep; I got to work and typed until 11:30. I revised and proofread, changed words and searched for powerful adjectives. When I felt it was perfect I saved it for the final time. I slept fitfully that night from all the adrenaline that was pumping through me.
The next day at work, the in-laws were not there early the way they sometimes are. I loaded labels into my dot-matrix printer and started going through our extensive customer file. I picked people that I had taken product orders from, and a few that we knew personally. I had about 20 names when I was done. My MIL called to say she was on her way and she would check the post office box. Drat, I wanted to mail these today! Oh well, there would be plenty of time. I could always do it on the way home. I looked for some old envelopes that we didn’t use anymore. They had Bush Signs on them and I wanted the name recognition to make the recipients curious enough to open them. I put the labels on and started the next phase of my plan. I made copies like it was my personal machine. I had no shame, I tell you! Then my MIL drove up and I shoved everything into my file drawer and pretended to look busy with some past due accounts. Her stay was short, thank God.
After my MIL left, I finished my copies and stuffed the envelopes. My only problem was payday was a week away and I didn’t have enough postage for all the letters. I said, “Screw it” and I started running them through our postage meter. Michelle walked by and I joked, “I’m just stealing a little postage, it’s their granddaughter anyway.” She laughed and said, “Hey, some things I don’t see. You will probably be signing my checks one day and I mind my own business.” I felt guilty for about ten seconds. I packed up my stuff and tried to get some real work done before it was time to go. I was about to jump out my skin but I made it to 4:00 and went straight to the post office. Then the panic set in. Was I prepared to go through with the outcome of this? What was I going to do if nobody responded? What would I do if they did? I tried not to think about it while I drove to Jaida’s school.
I knew there was another step I could take with the school system, but I wasn’t sure what it was. Roan called me a few days later to tell me the parents she had mentioned were having a meeting and did I want to come? I told her I would be there; just tell me where and when. We met on a Thursday night at J and A’s house. J and A’s son, T, has a form of autism called PDD/NOS, which stands for Pervasive Developmental Disorder/Not Otherwise Specified. It’s similar to Autism Spectrum Disorder, which is what Jaida has. Those terms basically mean there are enough characteristics (behaviorally, neurologically and/or physically) to suggest autism, but not enough to be totally autistic. If that makes any sense.
A answered the door with the cutest baby in his arms. J said she was four months old. I was intrigued to learn that T and his sister, K were almost the same age that Jaida and Jarod were when Jaida was diagnosed. K even has reflux like Jarod does, though not as severe. Our family similarities were so close it was almost scary. I knew I was not at this house by accident. I was the first one there and we chatted for a few minutes before Roan showed up. Soon, the other parents arrived and we settled in the great room to talk. Each parent shared a little about their child and the way their situations had played out. I was happy to know the school system’s decision was not something I had to settle for. A couple parents had gotten therapies for their kids after a little or a lot of prodding and pushing. I was feeling encouraged.
When it was my turn, Roan asked me to talk about the IEP meeting. I took a deep breath and told my story. At some points, Roan was burying her face in her hands and groaning. She was still deeply disturbed by what had transpired that day and she felt partly responsible. She apologized when I was done and she told the group, “I blew it.” I tried to reassure her that she had no way of knowing what would happen. After all, it was her first IEP meeting and I could tell she would never forget it. A couple of the parents had older children and they shared what it was like being the pioneers of the group, so to speak. All I could think about while listening was how glad I was that they had already paved the way. They went through some crap that made my meeting look like a walk in the park.
Afterwards, the other parents gave me some pointers and much needed pep talks. Each one offered to help me. I was so happy and relieved. J and I talked about T and Jaida. The way the autism had presented itself was almost identical in our kids. T was a year younger than Jaida and I could remember vividly how I felt one short year ago after getting her diagnosis. J said she felt like I was describing T when I talked about Jaida and her speech problems and the way out pediatrician brushed it off when I asked about it. J and I were commiserating about how pediatricians should do more Early Intervention referrals. We both agreed that there should be some type of agency that suggested EI when parents had questions about their child’s milestone progress. We finally said our goodbyes and J prepared to go inside since K was fussing and not feeling too well. I agreed that she seemed to be hurting because she had coughed/gagged just the way Jarod had done at her age earlier on during the meeting. I told J that she sounded like a silent refluxer to me.
I got into my car after almost killing J’s cat who was lounging behind me on the lawn. It was almost 11:00! I got home and my Mom was on the sofa with Jarod. He had just finished his middle of the night bottle. She motioned for me to go on and I tiptoed to my room and took a shower. I was so pumped that I could not drop off to sleep. I felt like I had to put closure to some of the things J and I had talked about. After I got Jaida taken care of, I wanted to work on the referral agency idea. I needed a name, something catchy and maybe an acronym. Then, at 12:50 AM on that Friday morning, it came to me. The agency that J and I would someday start would be called MAMA. This stands for Mother’s Advocacy for Milestone Assessment. I chuckled softly there in the dark at the thought of claiming J as my cofounder without her consent. Then, the strangest thing happened. As I vowed to remember the name when I woke up, I felt my mind and body relax and I drifted off into the most peaceful sleep I’d had in days.
The next day, I decided to take the advice of the parents and ask for an independent speech evaluation. I also contacted a group called SEAC, or the Special Education Advocacy Committee. Since the school system would not accept the private eval, they could bill the taxpayers to be proven wrong. After the Special Ed coordinator for the county got my letter, she had Sherry call me. It was a regular afternoon when I got Sherry’s call. Sherry seemed annoyed and she was very short with me. After stating that her boss asked her to call me, she said, “What is it that you want?” I told her I wanted an independent speech eval, and she knew damn well what I wanted. She said I could take Jaida to AUM and tell them to bill the preschool program for the testing.
I called and made an appointment and the earliest we could go was October 21. I decided to be patient and just wait it out. In the meantime, my Dad told me he would give me the money for three months worth of private therapy. I was so excited and I couldn’t thank him enough. I called Roan the next day and worked out the schedule. If we met twice a week, I would have just enough for three months. I decided that whatever the outcome, at least Jaida would have some therapy and I knew Roan would tell me how to reinforce what they worked on in the sessions at home.
I got Jaida’s records together for Donna at SEAC and she promised to call me as soon as she reviewed them. True to her word, Donna called me a few days later. She asked if she could attend the next IEP meeting with me. I told her she was overly confident and I felt we would have to take some kind of legal action before we got that far. Donna said she was sure that if I jumped through the hoops (and my requesting the eval was a perfect next step) I would probably be pleasantly surprised. She said that asking for the eval would make them reexamine Roan’s report. Donna said they were letting Jaida slip through the cracks and she was very curious about how the school system officials higher up the ladder would handle our case. We exchanged email addresses and I promised to keep Donna posted the minute I had any news.
10/21/02
The day we went to AUM, I was expecting to be disappointed. Instead, the lady doing the testing, Mrs. M was very nice. After I told her that Jaida had been there before she went to pull her file from the previous year. It was then that things got interesting. She asked about how Jaida went from echolalia and a severe language delay to speaking in sentences. I told her about Dr. Corbier and the vitamin therapy. She seemed intrigued by the ASD diagnosis. After I briefly summarized the major concerns we had, she commented that some of them were common in ASD children. I felt the hair on the back of neck stand up and I got goose bumps. She was familiar with the autism spectrum! She would not think I was trying to turn Jaida into something she wasn’t. I was getting more excited by the minute.
Mrs. M decided to start with a hearing test. Jaida repeated the instructions perfectly, a byproduct of echolalia. However, she would not follow through with the appropriate response. We all knew she was hearing the tones in the headphones by her reaction (some ASD kids are hypersensitive to sounds) and her facial expression. She just would not raise her hand. Mrs. M went to get her boss, Mrs. P. They tried a different method of asking Jaida to throw a block in a box when she heard the tones. Jaida smiled and took the block. Mrs. M turned on the tones again and Jaida shrugged her shoulders and looked sideways, towards the side that was emitting the tone. Mrs. P asked if she heard it. Jaida said yes, with the block still in her hand. They tried for 30 minutes before Mrs. P finally said, “She’s just not going to condition.” Mrs. M decided to begin the testing.
I was ushered into a small room to watch on a closed circuit TV system. Mrs. M asked Jaida the test questions and Jaida responded the way she always did. Soon, Jaida was tired and restless. I'd had to pick her up from preschool before she had a chance to take a nap. Even I was tired of listening, so I know Jaida had to be exhausted. We were scheduled to see Roan that night and I was contemplating canceling the session. I really didn’t want to put her through too much stress. The lack of a nap would complicate things even more. After the testing was complete, Mrs. M asked us to wait while she scored it. She was very surprised by the initial results. Jaida presents like an ordinary child, but after you scratch the surface the problems are plain as day.
Mrs. M called us to her office after she finished the scoring. She said Jaida was missing some of the important structure of language. Her recommendation was for a full educational eval, further testing in the area of language pragmatics and an audiological exam. I asked Mrs. M if she felt therapy would help Jaida and she said it possibly would. I gave her the names of all the people that should get copies of the official report. I included Dr. Corbier, Sherry at the preschool program, Dr. Simon (our regular pediatrician) and myself. I decided to wait until I had the report to plan my next step with the school system. Mrs. M had told me her thoughts, but she could change her mind when it came time to write her report. Just as I predicted, Jaida had a meltdown in the car. I called Roan as soon as we got home and canceled the session.
A week later, I got the report. Mrs. M had left out the part about a full educational eval. I typed a letter asking for a meeting and faxed it to the special education coordinator for our county. I was not going to deal with Sherry, and I’m sure she wouldn’t shed any tears over not talking to me again. Also, out of the blue, the director of autism services for the state called me and said the state special education director asked her to call me after he got my letter. I was floored! She said she would call Montgomery County and light a fire under them. About an hour later, a lady from our county special education office called. She said Jaida could have therapy and I could take her to AUM or the school we were zoned for. I was elated, until I asked about sitting down with them to discuss the testing report. She said we didn’t need to meet again, that I really didn’t have to. After we hung up, I had a strange feeling about the whole conversation. I called Donna at SEAC to ask if I was doing the right thing.
Donna said I still needed to meet with somebody at special Ed to write an IEP. I must have documentation stating how many sessions a week we were getting and the length of those sessions. That way, they would all sign it and it would be a legally binding contract. I felt better instantly and I called the special ed lady back. She wasn’t in and neither was her boss. SIGH… Monday was the soonest I could talk to them, the receptionist said. Well, at least that would give me time to think.
Kim, Jaida & Jarod
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