...taking a break from writing...

I have reached a point in my story that is delicate and difficult to write about so I have am taking a very long break.

All is going well otherwise! Sean is now 23 (edited in 2018) and is in a residential program with The Arc of Jefferson. I still have a lot to write about especially the puberty years. Much has happened between 2nd grade till now, but it takes time to gather my memories and thoughts and write about them with an understanding, forgiving, and caring spirit. Thanks for reading. See ya soon.

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

89. A Tall Tale

It was clearly noted in the testing that Savannah was creative. The creative part of her brain was her safe place. She enjoyed every chance she could get to show her creativity, so when Mrs. Dyess assigned a reading project, Savannah was all over it. I had a way of nosing in on projects because I just wanted her to get them done in a timely manner but with this one, she was assertive and polite and all but said, "Back off, Mom!" She did me proud. Meet Princess Culacina!

by Savannah Lee Owen

Third Grade - age 8

2002

88. Confessions from a Third Grader

Conditions of Testing and Behavioral Observations:

"Savannah seemed to easily adjust to the one-to-one testing session. She was able to direct her attention well to testing tasks, and results appear to be valid.

In talking informally with Savannah about coming to Mountain Brook Elementary, Savannah explained, "We got divorced. My daddy lives in Oklahoma and my grandmother in Montgomery." When asked who she lived with, Savannah said her mommy, and her brother, Sean. She then asked, "Have you heard about Sean? He's autistic. He sometimes screams. He loves to watch 'Eyewitness' movies on rocks, minerals, and animals." 

When asked about her interests, she said her favorite sport was swimming which she did in Texas when it was warm. When asked about other interests, she said that she also likes to watch 'Eyewitness' for nature and science. She then volunteered that her favorite drink is water because it is healthier than milk because most of your body is water.

When asked about school, Savannah said that her least favorite subject was math, commenting, "I really hate it, but I'm good at it." 

Savannah said that she likes art and music. When asked about reading she said, "The least favorite part is writing definitions. I don't like to write, but I love to draw. We have to do DOL (Daily Oral Language) in cursive. It gets boring writing in cursive. Writing is the same as math. I don't like it, but I'm good at it."

Savannah felt that she had several friends in class. She said she likes snack time and recess. She doesn't like P.E. because of running laps, commenting, "I walk laps. I don't like to run laps." 

When asked about listening, Savannah said, "Sometimes I have a hard time staying focused. Sometimes I forget some of my homework. I think I got all my worries off. I get afraid and I tell mom to let it all out."

+++

It must have been this time in Savannah's life when she went through her "confession" phase. She began telling me e-v-e-r-y-t-h-i-n-g she had locked away in her guilt-ridden conscious. She would call me to her side and agonize over whether to tell me something. I had to pull it out of her all the while thinking the worst. What on earth had she done?

After l-o-n-g hesitations and me reassuring her, "it's okay, Honey, you can do it" she would confess her "crimes" which were no worse than this: 

"I was in P.E. once back in first grade and I told the coach that I couldn't walk or run because my foot hurt. And it didn't. I lied."

I wanted to strangle the poor child. I thought, "That's it? For real?" I expected a shoplifting tale, or a story about how she took a girl's Fritos at snack time on the playground and ate them in front of her - no wait, that was me - or that she busted a window with a ball! 

With each confession I reassured Savannah that she had been forgiven for all of those things. I reminded her that she was a good girl and more importantly, my girl and that I was super blessed to have her. Lying to her teacher or to anyone was very wrong and I was glad she thought so too. 

Besides Savannah needing to clear her conscious, I look at her confession phase as a way of quietly demanding my attention. It did take me awhile to pull them out of her. I was glad I was patient. I was happy that I didn't blow it.

Footnote: I was reading this entry to Savannah last night - July 13, 2013. Her version goes like this:

"I waited to do yet another project at the very last minute and we were scrambling to get it done. I had lied to you about having to get it done and you said, with a ruler in your hand, 'If you lie to me ever again, I will spank you with this ruler!'" So, she apparently decided to come clean about everything to cover her bases! Hahaha!

My response was this: "At least you learned your lesson and I didn't have to use it! Too, several years earlier it could've been mean ol Mister Spoon in my hand!" I like my version better!

87. Pulling the Inside, Out

It was all finally documented. Testing revealed that her intellectual ability was in the average range while her achievement scores were in the average to above average range. The IEP team recommended that she receive special education services under "Other Health Impaired".

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The graphs showed that Savannah was all over the place. The most surprising part to me was that she was demanding at school. When she needed or wanted attention, she was not afraid to demand it. This was not the case at home. And out of all of the findings, this made me the most sad. I didn't want her to demand it per se, but I wanted her to let me know. She seldom ever let me know.

86. Likely Possibly

Child Observation Forms

"Savannah has extreme difficulty focusing, staying on task. She cannot handle numerous directions, activities at once. She is overwhelmed easily. She gets fixated on an idea, thought, cannot get it out of her mind, demands attention immediately - very creative, if she does not like the activity - she does not want to do it. She fiddles at her desk, writing, drawing, has trouble staying focused to listen to directions. She demands to be heard." -- Mrs. Dyess, 3rd grade teacher

"At times she is very active and loud - but not really participating in game play. She does not seem to know what to do. Other times, she will sit and look off and will not participate at all - seems unaware of other children." -- Coach Thomas, Physical Education

"Savannah loves Music, so I don't have a great deal of trouble with her staying on task. She does blurt out and acts impulsively sometimes." --Mrs. Elmore, Music

"Her inattentiveness is largely devoted to internal distractions. External distractions are a problem, however. She is aware that she may receive medication and that her inattentiveness has increased." 

--Mrs. Cross, Counselor

Special Education Teacher Observation by Ms. Noble:

Activity - Globes

Class - 3rd regular classroom

"Every child in the classroom has a globe, dry erase marker, and notebook on their desk. As a class, the teacher went through the notebook questions and instructions one by one. Each child was the follow the directions which included finding a place on the globe, circling it, then recording in notebook. The majority of the class seemed very engaged and excited (perhaps a bit rowdy). As I observed, Savannah, who was seated in the front middle, did not do anything. She seemed to just sit in a daze. The teacher prompted her a few times, but she still did not participate. She may have been listening, but was not using her globe, pen, or notebook."

Student Referral Form Notes:
- delightful child, very sweet
- extremely creative (loves to draw, act - plays)
- reading comprehension - strength
- math - weakness (especially problem solving) 
*uhh, isn't that what math is? I'm just saying*
- overwhelms easily if timed
- tunes out to oral directions
- needs 1-1 instruction
- will understand concept one day - next week does not remember how to do it
- obsessive (lost lunch, coat, missing folder, etc)

Concerns:
- cries - wants to see the counselor
- stubborn - wants to do what she wants, inflexible
- demands immediate attention

Asperger's Syndrome Diagnostic Scale - ASDS
80 - 89 Possibly
90 - 11- Likely

Mom's rating: 86
Mrs. Dyess' rating: 92

And so the tests went on and on:
Vision
Hearing
WISC III (Wechsler Intellectual Scale for Children III)
WIAT (Wechsler Individual Achievement Test)
BASC (Behavior Assessment System for Children)
Conner's Behavioral Rating Scales

The concerns were strong in the areas of inattention, cognitive problems, anxiety, atypicality, adaptability, depression, social skills, internalizing problems.

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"Internalizing problems" seemed to scare me the most.

85. Testing Testing 123

As Sean and everyone else battled his autism, Savannah was doing her best to battle her own yet to be diagnosed autism. Unbeknownst to all of us she was falling through the cracks. She was overshadowed by her brother's demanding behavior. It was no one's fault, really. I was too overwhelmed with Sean and my own funk that I didn't observe her as much as I should have. Honestly, she was so quiet and well behaved that she fell into the background and was labeled as, "my easy child". I was thankful to her but unfair to her. She deserved more of my focused attention.

Savannah was born on the last day of July which meant that she was young to be starting Kindergarten along with those her age in the coming September of 98. It was suggested when she was in preschool that she might benefit from repeating another year of fours. At the time I was desperate to get her into school full time so I could potentially find work and have some down time. She was in an inclusion kindergarten class so, I thought if Ms. Livingston, the special education teacher in her class, observed anything about her inability to learn or behavior, then I would move forward with further testing. She seemed to make it through with good grades and happy times so I wasn't concerned. Ms. Livingston mentioned seeing a processing deficit/delay but it wasn't anything that stood out enough to hold her back. I regret not doing it anyway. She deserved to be ahead.

Now that Savannah was in third grade, which is a pivotal year in school, she began to outwardly struggle. If she was out sick and came back to school to a lot of make-up work, her anxiety was apparent. On the fourth day of SAT testing - and the filling in of all those dots - she firmly put her No. 2 on her desk and said out loud, "This is ridiculous!!" and refused to continue. That's my rebel! 

It was decided then to begin some specified testing. It was time to bring Savannah out of Sean's shadow and get her the support she deserved. 

84. An Angel and a Saint!

Sean and Ms. Wright
Mountain Brook Elementary
First Grade - 2001-2002

Sean and Ms. Lelie Wright

An Angel and a Saint

83. From Top Dog to Throw Down

Sean's first grade year was full of trial and error. Ms. Wright, Ms. Hughes, Ms. Murray and Ms. Lee, his first grade mainstream teacher, were all about trying to get a handle on his fit pitching. Leli (Ms. Wright) and I kept a daily journal so we could look for patterns in behavior. We saw a pattern alright! A disturbing pattern of behavior that seemed to never get better. He pitched fits constantly. One typical entry went something like this:

From Lelie:

January 12, 2002

Peggy, "Sean was "Top Dog" and "King" today. He took the lunchroom count to the lunchroom all by himself w/ Marjorie. He actually wore the crown too. We have had a pretty rough day - two big fits. He would not work at all today. He has been real defiant. In his first fit he was throwing things, hurting himself, hitting me, then he started crying and fell asleep in the middle of his cry. He was out about five minutes and woke up and said, "I hurt Mama's boy - sit down, now." He wanted to sit in the chair he threw. This was one of the worst fits I have seen. Then in gym, he threw another fit. Ms. Lee and I had to put him in the bathroom. He was kicking then too - Ms. Lee this time..." ~Lelie

March 18, 2002

Peggy, We had a wonderful morning. I have tried something new - take Sean in the resource room to do work, the he can go in Ms. Lee's room after he gets started. It worked great! He did so much work.

We had a small problem - in gym today, Sean obviously did not like what the other kids were doing and he ran away. When I went to get him, he kicked me and broke my toenail in half, split down the middle and it has bled all day. Pat made me go to the doctor to make sure it was not broken. He said it was just nerve damage in my nail bed and would be okay in a few weeks. He (Sean) has been very apologetic and always tries to see it. Maybe now that he has seen the blood and the tears he'll stop this now. Hope so - have a great afternoon. ~Lelie.

Lelie had her work cut out for her but she was beginning to get creative with Sean's schedule and understand that the stimuli had to be limited in order to get him to work. The idea of mainstreaming and placing a child in the "least restrictive environment" is ideal but only if it works for the child. In Sean's case, the fits indicated that he wasn't quite ready.

82. Both Guns A-blazing

Next came "Ms. Lee's Book" titled: My First Book of Animals. 

His first grade mainstream teacher gave him the book after he wouldn't give it back. Sean had a magical way of keeping things he coveted just because no one had the heart or stomach to witness a throw down. I would intervene as much as I could just to avoid the absolute spoilage of my child but once the book was given, it was given. I'm pretty sure that Sean could hypnotize just about anyone with his huge hazel eyes and a shrieking animal sound. The "act like a monkey on a seizure" was his if all else fails approach also known as Plan C. Sometimes he just skipped plans A & B altogether and whoops, there he goes. He had the ladies right where he wanted them, except for Ms. Wright. She was the new Sheriff in town, the fastest ducking Parapro in the east! She was the balancing act in his one man show. His autism was for real but he knew how to work it like a pro.  

81. A Wild Kingdom

Sean's entry into first grade was not so easy-does-it. Let me put it this way, the students were introduced to the new kid in town on a daily basis for the rest of the year. He pitched a lot of fits but what stood out the most that year was his fixation on the book, The Animal Atlas.

He borrowed the book from his cousins with the intention of never giving it back. I saw a new obsession emerge and it was one I could live with. So what if it was a kinkajou from the rainforest that had us suddenly communicating like long lost friends? We were in Animal Heaven for two different reasons: Sean, for the content and me, for the contentment.

80. When Hands Come in Handy

While I was preoccupied with Sean, Savannah was hanging out a lot with her cousins. She began writing plays for them all to perform. I was thankful for her creativity and resilience, but I was jealous of it. I wanted to be swallowed up by fantasy, and live as a character in one of her plays. I didn't really care which one. I was not enjoying my role as a mother, much less one of those - "single mothers" but I knew I had made the right decision. Savannah was happy. She was no longer caught standing under the stream of insults passed between me and her father. All of the air around her was available to her. She had breathing room. She was blooming.

Savannah's entry into third grade at Mountain Brook Elementary appeared to be stress free. She took ownership of her right to be there even though she barely knew anyone. She was comfortable as long as she could doodle and play with her hand puppets - the Milos - in between her lessons and sometimes not. They were characters that were literally her hands. She developed them when she was six years old and continued to interact with them until the end of third grade. They were the equivalent to imaginary friends but they were visible for all to see. Savannah was visible too.

Drama at its best!

79. May I Have Your Attention

During the summer of 2001, I had time to apply for SSI (Supplemental Security Income) for Sean. After a long evaluation, Sean qualified. The amount was based on my income and it fluctuated if I made more or less each month. With child support and SSI which also provided Medicaid for Sean, I was able to stand on two feet and take care of myself and the children. It wasn't much but it was enough to help me along until I was able to find work.

Meanwhile, I celebrated my 40th birthday in July of 2001. Pat came to help my friends and me celebrate. It was comforting to see her again.

In the early days of learning to live with autism, I approached every beginning, no matter how big or small, with every hope that progress would be made without setbacks. I have always been a dreamer. I eventually accepted that the setbacks were the stepping stones to Sean's progress. Sometimes you just have to step on them twice to make sure you know where you are going!

When Sean began first grade with a new IEP in place and a beautiful new devoted sidekick named Ms. Wright, I expected his tantrums to be less frequent, less intense. Not so fast, there, Dreamer!

During my very early career as a mother, I frequently heard (with regard to behavior), "It often gets worse before it gets better." So, it didn't take long at all before that statement began to ring in my ears day after day. There was progress but it was slow and hard to get to. Sean began to communicate better but it would take awhile to come up with a system that was one step ahead of him when it came to controlling his disruptive master of manipulation behavior. Time out just didn't cut it.

Ms. Wright and I kept a daily journal so I could track any patterns or triggers. I frequently read that Sean did things "for no reason" which just meant that the reason was hard to identify. He was definitely a mystery. He was engaging on a positive and negative level, intensely so. He was one of those "attention seeking" types. When he wanted attention, he got it. When he got it, he kept it - 

for a very long time.

78. Tantrums and Gestures

Sean's three year evaluation had already been done in Harlingen so Mountain Brook Elementary had a good idea of who their new student was on paper. They wrote his IEP, Individual Education Plan with the duration dates of 5/2/01 - 9/15/01 to get him started in their system. The IEP is a series of projected benchmarks:

Language Arts:


present level of performance: 
"Sean seems to know some colors, is beginning to write his name, and is recognizing some words."
Benchmark: 
1. Sean will name 8 colors 8/10 times
annual goal:
"Sean will improve language arts skills"
Benchmarks: 
1. Sean will write his name (first and last)
2. Sean will match 10 written words to objects/pictures, 8/10 times.
3. Sean will count objects to 10, using 1:1 correspondence, 8/10 times

Behavior:
"Sean sometimes resorts to tantrum behavior when his needs/desires are not met." 
1. saying "no" w/word-n-gesture (to address his screaming for "no")
2. using picture schedule (to address his refusal to follow routines)
3. making the same (predictable) routine as much as possible 
4. can't go to next fun activity until cleaned up (to address throwing things)
5. using some type of "language" to communicate desires like picture boards, gestures, words 


Language:
Sean communicates primarily by gestures. He often gets frustrated because of his inability to be understood. Sean has good imitative skills and many of his utterances are echolaic.
Benchmarks:
1. Sean will answer yes and no questions 8/10 times (gestures/verbal, etc.)
2. Sean will name teachers when asked, 8/10 times
3. Sean will make requests for things he needs 8/10 times
4. Sean will name common objects with 80% accuracy


Sean requires small group and individual assistance to reduce distractions and sensory overload.

With the short term IEP in place, Ms. Hughes, Ms. Murray and Ms. Wright at least had a starting point and from the looks of things, behavior was the priority. Without the tantrums under control, there was little chance to work on the academic goals. Sean needed to find his "voice" and use it constructively. He took to the methods like Sid to his deconstructed toys and began to learn. His echolalia would soon go away as his ability to communicate took it's place.

Sean qualified for ESY (Extended School Year) which allowed him to go to school for six weeks in the summer. This helped some but summer always had me on my toes.

For me, nose diving into summer with an autistic child was like being trapped  inside a Dali painting. I was  left to find my way around the perfectly rendered surrealism with no way out until the fall. But when Fall came, it was another ball game but at least I didn't feel so alone.

77. Forever in the Middle

Seems we moved just in time! Si?

76. Special Delivery

Luckily, I remembered to get Savannah and Sean's IEP's and testing documents during the move, so transferring the information to their new school was easy. I didn't need Savannah's until the next year but at least I had them when the time came. I also had both schools mail me the children's work, journals and such. When I opened the packet from Mrs. Livingston, Sean's kindergarten picture was in it.

Savannah's second grade classmates made cards for her. It was hard to tell what she was feeling but she sure smiled when she saw all of them. I think she was glad to be in "Birmington".

by Margaret

To Savannah From Elisha