94. The First of Many

At the close of his first grade school year, Sean was still on the attention seeking tantrum track. Day after day the journal entries between Ms. Wright and I were all about time-outs, grunting and his lack of compliance. Early on I was hopeful - looking for answers, making suggestions, trying to find the answer hidden between each behavior. In my later entries, I often wrote, "I don't know what to do anymore. I'm all out of answers!" As if I really had any to begin with. Honestly, I was just going through the motions to keep my head above water. I felt discouraged.

It was suggested by the school that Glenwood, an autism behavior health center in Birmingham, be contacted and that is what I did. Glenwood came to my apartment for an intake on May 8, 2002 to discuss their First Program which was designed to give the family in-home support and provide services such as respite and classes to help with the management of autism and I suppose life in general - basic coping skills.

Journal entries:

May, 9, 2002

Lelie-

Glenwood and the FIRST Program are just what we need! We've been assigned a case worker and she can begin as soon as I can get some classes in. They will help w/psychotherapy, behavior, stress & anger management - Anna (case worker) will assist at school then transition him to home if we want her to. She will sort of be the "glue" b/tween school & home. The person to help us stay (or get) on the same page. She will come to his IEP and discuss where she can fill in. I think this is the answer to many problems. Sean will be far more independent. The in-home visits are 6 hrs/wk for 4 mos. Then, the follow-up lasts one year. Awesome! Anna is (seems) right for Sean! They were here two hours doing intake. Anna and Cindy...

May 17, 2002

Lelie,

... I had an interesting anger management meeting and discovered some of my own attention-seeking behaviors - mirrior mirrior! I'll explain more later. This program should help us ALL maybe focusing on me initially...

I was super psyched that we had some outside support and that it focused on the family as a whole. I didn't expect that but was open to anything. I felt encouraged again.

"Think left and think right, think low and think high. Oh, the thinks you can think up, if only you try!" ~Dr. Seuss

93. Big as Life

Sean's Life Size Human Body

2nd grade

92. A Peek Inside

Sean's love for visual dictionaries continued to grow. When it came to books, he was strictly into non-fiction. When he got the "Scholastic Visual Dictionary" in second grade, his focus shifted from animals to exotic fruits and vegetables, orchestral placement - this is when he began to compare big and little. He was into drum sets (high hat symbol) and the human body.

I was thrilled to have "conversations" with him about all of these things.

The pages with the produce had cross sectioned fruits and vegetables. With whatever veggies and fruits I had, I'd cut them in half and he would lay one side face down and the other face up. He learned about cherimoya and lychee, all of the squashes and melons. He didn't want to eat them, he just wanted to look at them.

If Sean acted up in Walmart I'd day, "If you want to see the produce, you'd better straighten up right now!" Produce as collateral, who knew?!

His fascination with fruits and veggies quickly changed to the human body. Before long he was drawing organs, meissner's corpuscle and the brain. With each obsession, I was getting more of a glimpse of how his worked.

91. Can or Can't?

The IEP meeting for Sean moving into Ms. Tuck's second grade class was held on May 14, 2002  before school dismissed for the summer. The most obvious task was to get Sean to express his needs and desires through language or other civil means. His fits were a huge problem.

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   "Sean is a six year old student in Sandra Lee's first grade class. Sean and his family moved to Mountain Brook in April 2001. While in school in Texas, Sean was diagnosed with autism.

    Sean had great difficulty making the transition to Mountain Brook Elementary School last year. His inability to communicate his needs and desires led to frequent tantrums. His behavior had improved greatly this year until December. He had many school days that were filled with frustration until just recently. A couple of weeks ago, around the end of April, 2002, Sean has seemed much happier and more compliant.

    The characteristics of Sean's autism cause many problems in he school environment. His language skills are severely impaired. Sean's vocabulary is developing, and he is learning to use many words appropriately. He combines words, gestures, and pointing to convey meaning. Most of his communication is requesting, commenting, and rote greetings. His imitative skills are good which aid his development of vocabulary. His behavior problems seem to be due to his lack of language skills and from his need for attention.

      Sean has shown the greatest improvement in the area of language development. At times he is able to communicate his needs quite effectively. However, at other times, this continues to be a major cause of frustration. He is using "yes" and "no" fairly consistently. This helps the teachers question him until they can determine what he is trying to say. Also, he is putting together 2 and 3 words. His vocabulary has increased greatly with the addition of body parts to his vast knowledge of animals! His use of opposites, prepositions and adjectives has contributed to his ability to string words together.

     Sean has a difficult time staying on task until it is completed. He is easily distracted, and often abandons the required activity in order to do something else. It is sometimes hard to tell if Sean is unable, or unwilling, to do an activity.

     Sean was able to spend most of the day in the class during the fall. However, as his behavior became more unmanageable and disruptive to the class, he began spending more time in the resource room. He seeks the teacher's undivided attention, and the requirements of the classroom may have been too much for him at that time.

     Sean is a precious child! He has a wonderful smile, and he is very loving. He enjoys laughing and playing games. His motor skills are excellent and he loves to play outside on the playground."

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I was really glad that Sean's teachers agreed that it was hard to tell if Sean was unable or unwilling at times. Not knowing which, it was hard for me to parent him appropriately. -inmyopinion- I had to guess at which one it was and oftentimes, something would later indicate that I was wrong.

When I read about him putting 2 and 3 words together I remembered that he had already learned to do that when he was a little bitty guy. He would say, "want juice" or "watch Pooh" and then the thief in the night came and took his speech away and replaced it with nothing but a blank stare. It wasn't so abrupt as that, but it may as well have been. It would have been easier to see when it all began. I still want to know. When your child reaches a milestone you don't expect it to be taken away from him. Aside from all that, I was grateful for the dedicated teachers who were determined to teach him how to speak again - to calm down enough and use his words to get what he wanted and needed. Luckily Sean's smile had to ability to erase the memory of the severity his meltdowns.

90. The Shortest Distance

I was so burnt out on test results - graphs and number charts - that I began to look at them as if they were just another piece of junk mail. Between Savannah and Sean's documents, my files were getting thicker by the week. I took the results as seriously as I knew how,  but every time I was forced to read and sign them, I felt defeated. Thankfully they didn't report life vs. death in the physical sense. Upon reading them they sure reminded me that I was emotionally vulnerable. I could blaze through the meetings and talk about the goals and proactive measures to close the gap between typical and atypical behavior, but at the end of the day I felt so small and inadequate. It hurt a lot to feel small. In spite of this hurt, I had to push through it. There was no way around it. My work was the most important of all. My heart had to get over it.

 "The best way out is always through." ~ Robert Frost