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

75. Inner Strength

Andrew Wyeth . Wind From the Sea . 1948

Monarch The aria slid past sheers, filled the iron room with feather-soft notes. The music took her face from the pillow, mesmerized her sorrow. Her worries squirmed in her underbelly like half-butterflies in search of detail, identity and light. The sparrow-song set the tempo, cocooned the fear of what-to-do wonder. She peeled back the quilt, gave milkweed skin to sun-silk heat. Her sorrow flew to the throat of the bird. It did not swallow, instead, it sang a new song, and created a monarch. ©2000 Peggy Putnam Owen

74. Super Human

Within a two week period, the children were in a brand new school and home without the comfort of all of their familiar things. I grabbed what I thought would be the things they would grab on my way out of Harlingen but later Savannah would ask things like, "Did you get my marble game"? I always spoke the truth about the move but somehow I think Savannah knew way before I did that her dad and I should either be apart or quit our nonsense. 

Savannah was excited to be around her cousins who lived just around the curve so I didn't worry about her too much. I worried about her in school but at least she had the balance of family close by. Sean was a different story. He had tantrums every day which was not unusual except that he was in a new place and had yet another reason to throw down. I burst on the scene with him and the school was not prepared. Even though it was their "job", Ms. Hughes and Ms. Murray were two of his best teachers in that they handled him with great patience and genuine super human effort to help Sean communicate and accept the transition. They only had a month left before summer which probably helped!! Sean qualified for school in the summer which was minimal but very helpful. They had time to hire Ms. Wright, his one-on-one para-pro to help him ease into first grade. 

Even though I'd left one battle behind, little did I know that my biggest battle was just beginning. I had to constantly draw on my inner strength and focus on the possibilities. I was going to make things right. I was coming out of denial and correcting the wrong. I believed in myself. Didn't I?

73. Stalling

Since I was served divorce papers in Texas, I had to appear in court a week after I'd made the move to Birmingham. I had booked a flight before Dad and I left the Smith's, so it was just a matter of making sure the children were taken care of and taken care of they were. 

The week before I flew out of Birmingham I managed to get replacement birth certificates, social security cards, blue forms, and the kids enrolled into Mountain Brook Elementary. During the collecting of my things, I neglected to take the filing cabinet with all of our documents in it. The cabinet was destroyed so I had to start from scratch. The stars were aligned and new files were created.

With the support of Jo and Gary and my good friend Beth, I was able to work some to help establish (to the court) the fact that I was already "dug in". I was not returning to Harlingen even though it was requested by the "other side". My new home was in Birmingham.

The court date was set on a Friday so I made it down to Pat's on Thursday night. This hearing was to prevent me from moving myself and the children to Birmingham. If ruled in his favor, it would only put off the inevitable - I was going to live in Birmingham! Besides that, I was already there! I arrived at the courtroom in Harlingen bright and early in my borrowed dress and shoes. I was nervous and felt my emotions rising up in my throat. This was it. I turned the corner and saw my husband's "team" of supporters, and I sunk. I had no one with me. I hurried to the bathroom, went into the stall and broke down. I was mostly hurt to see our counselor, the preacher man aka Woody, there on his side. As hurtful as it was to see him there, it explained my instincts about the counseling to begin with. He didn't offer counseling to support me too. He was there to try and fix me. Aren't counselors suppose to be neutral?

In less than ten minutes I dried my tears, gave myself a good pep talk, pulled up my big girl panties again and marched right out of that bathroom with my head held high. I stood within eyeshot of the other side and occasionally glanced at his whispering team of supporters. I finally went into the courtroom and listened to the other cases to pass the time. When the case of "Owen vs. Owen" came up, the two attorneys represented each of us and within a matter of thirty minutes, the judge ruled that I did not have to move back to Harlingen. Child support was established *whoopie cushion noise* and I was free to go.

On my way back to Pat's I stopped by Houston Elementary and talked to Sean's first teacher, Sylvia. I was thankful for being able to look her in the eye one last time and let her know what she meant to all of us.

By the time I made it to Pat's house the tension in my shoulders lessened, and my thoughts about the morning were farther apart. It was hard to believe that a month earlier I was planning a more peaceful, agreeable end to my marriage. 

Turned out that the court date was scheduled on the same day as Jack's birthday party so even though I was not in the best of moods, it was a wonderful distraction. 

I flew home the next day to face a harder truth. Sean still had autism.

72. Changing Lanes

My dad had rented a Penske Truck for five days. Within these five days our goal was to drive ten hours to Harlingen, load it, stay the night at Pat and Jack's, head to Shreveport the next day, do some more planning, gather the children, drive to Birmingham, put my dad on a midnight train back to Shreveport, find an apartment, unload the Penske Truck, and return it at the local Penske Truck place in Birmingham. Mission accomplished!

Booyah!

:an exclamatory statement, often said when someone is extremely overjoyed. Often people do a hand movement simultaneously as they say 'Booyah'(clinching fist and thrusting their elbow downward vertically)

I threw in an extra hand movement too. *evil grin* What? I couldn't help myself. I waved "goodbye" to my past life, is all. 

It was time to get busier. And busier, I got!

71. Pressure Release

Sean had just turned six when the bulging bottom had finally fallen out of our home life. All of us were feeling the strain. Sean was not yet potty trained in the #2 area but he had mastered the #1. I was standing there once when he was training for #1 and after he peed for what seemed to be for-feakin'-ever, he looked into the toilet and did the sign for yellow. Along with it he said, in a slow deep voice, "Yeeeellllooow". "Bipers" were costly so I really wanted him to move on and do the deed in the toilet. He knew the sign for 'brown' too. I thought, 'Come on, already!'

While dad and I were 'killin' time' in Texas, my mom was in Shreveport with the kids. I can't even imagine what it was like for her but as always, according to her, everyone was fine and dandy. Dad and I stayed two nights on the road but by the time we got back to Shreveport, Sean had taken his first dump in the toilet! I was almost jealous that I hadn't been there to witness it! I couldn't help but understand it all. It couldn't have been a coincidence. Sean was away from me and his dad long enough to relax and take a dump. It all came down to pressure in more ways than one. All I could do was give him a "high five".

70. Knock Knock

I pulled out of Pat and Jack's driveway, said, "Goodbye" to Harlingen and hit the gas. I planned to make the trip in two days so I wasn't in any real hurry on either day. I was heading to my folks in Shreveport but I knew that ultimately I would end up in Birmingham.

My sister and brother-in-law Jo and Gary and two of their five children came to visit us in Harlingen a month earlier. Jo is a friend I met at The University of Montevallo back when life was simple. I married her brother in 1986. My mother-in-law came to visit us too.

Jo and Gary became witnesses to our marital dysfunction and offered me helpful advice. Get the hell out or I'll kick your ass! They helped me see that life without my marriage was possible. I grabbed hold of their reassurance and within a month I was heading North with little more than the shirt on my back.

I had a lot to think about, loose ends to tie, and plans to make. I was really scrambling and flying by the seat of my big girl panties but I was flying! If I remember correctly, Sean was a complete angel. Either that or I was so enthralled in deciding my next move that the autism took a back seat. Everything was uncertain except that I was soon to be divorced. I had planned to file in Alabama so the jurisdiction would be there instead of Texas. There were no emotional ties to Harlingen except to my friends Pat and Jack.

We made it to my parents home after two exhausting days of travel. It was nice to be home. I knew between my dad and I, we could make headway on some plans. We wasted no time. It was a chocked full two weeks before the children and I rested in our apartment in Birmingham. Before this could happen, my dad and I had to caravan down to Harlingen - he, driving a Penske truck and me in my Toyota. We had a day to pack my things. My husband had been generous enough to get some of his co-workers to meet us and help with the heavy things. Then dad and I packed the smaller things. While doing so, there was a knock on the door. I answered it. The man asked me if I was "Peggy Owen" and as quick as I could say, "ye...", the papers were served and he was gone in a flash.

After a complete meltdown, my dad had me in a lawyer's office within the hour.

During this whole ordeal, I learned a lot from watching my father. It would serve me well in the years to come.

69. Adios

Now that the decision to go to my parent's in Shreveport was made I could relax somewhat. I had very mixed feelings about leaving but I knew that since the children and I had been taken to a shelter, I needed to stick with the advice they had given me. Basically it was that I shouldn't return home. I had no time to mourn the loss of our home so I just continued to stay in the proactive mindset. My mind was humming. I called Savannah and Sean's teachers and told them that the children wouldn't come back to school and that they would never see them again. I was especially emotional when talking to Sean's teachers, Sylvia, and Mrs. Livingston because they had been there for us since Sean was first diagnosed with autism. They were the early intervention pioneers in our lives. They worked extremely hard to pull Sean out of himself and hone his communication skills. They taught me too. They were tough. They were consistent and truly fine examples of how all teachers should be. I was afraid to make the transition without them. I prayed for Sean's future teachers to be as patient and understanding. Setting up my support system as soon as I got settled in Birmingham, more specifically, Mountain Brook was priority. I had miles to go in a short time before then.

Pat's husband Jack (of Jack's Homemade Margaritas) took my car to be serviced before I made the ten hour drive to Shreveport. I had an old Corolla that hadn't been serviced in some time. My car was never the car that got all the attention so it was quite neglected and costly. Jack made sure it was ready to roll. He never took a dime from me. What a blessing of security. 

The night before we left was bittersweet. I was ready to start a new chapter but I didn't want to leave my loving friends. Besides that, Pat was throwing a big birthday celebration for Jack at the end of the month and I didn't want to miss it! I didn't want to say goodbye this way but it had to be so. I don't remember if I slept very much at all that night but the next morning I was looking at life in a new light.

I packed the car with the few things I had taken the night we abruptly left, so all that was left to do was say, "Goodbye." As I hugged Pat, she gave me a wad of cash with a look on her face that said, "Take it and shut up." so I did. I began to cry but Pat said, "You're going to be okay."

And I believed her.

68. Interference

When we arrived at the Smith's house the children began to play as if it were any other visit. My children, quirks and all, were always made to feel at home at Pat's house. There was plenty of space to breathe too. Lord have mercy, we needed space to breathe! I felt my throat open up, my brow soften and my jaw loosen. As far as my mind was concerned it felt like I was on a fast train watching the outside world zing past me. I had to focus.

Several months previously I decided I was leaving the marriage so I began making plans. Plan A meant that the children would finish out the school year, then we would move to Birmingham near family, then I would file for divorce. Plan A sure as hell got bumped to Bum Flip Egypt so Plan B had to be planned and fast. I felt stuck. I likened it to the way Sean must have felt when we had to pick up his line made from video tapes because it prevented the garage door from being opened and he "needed" it open. Sometimes the undesired plan is the only one to follow.

While at Pat's I began making phone calls to find some free legal advice regarding my parental rights before leaving Texas. It wasn't easy. Savannah went to school with Pat's daughter Alyson so I took Sean with me to the "first come first serve legal counsel" cattle call back in Harlingen. I picked a number but it wasn't called. I ultimately went to a women's advocate organization and was reassured that I wouldn't be breaking any laws if I left the state with the children. I was reminded that even though Savannah and Sean were both of ours, I was their Mother. So, Sean and I went back to the car where I called my parents on Pat's cell phone. I burst into tears for the first time since we had left and said, "I'm coming home." 

I didn't realize how exhausted I was until I spoke those words. I looked at Sean and remembered that he was my strength. Savannah was my peace. With strength and peace, support from friends and family, and a place to go, we were going to be okay. Nothing was going to get in the way.

67. D is for Done

Savannah and Sean were asleep in their room, unaware that they were about to be plucked from their beds to never return to their home in Harlingen, Texas.

My dad made the call from Shreveport as I sit in my room waiting for the police to come. I had asked him to do it so I could get off the phone as soon as possible. Everything was so calm and quiet. I could hear my heart pound in my head. There was no other sound.

My husband was surprised when he answered the knock. I started breathing again and came out of my bedroom. They separated us to question us. It was obvious to the Officer that I had reached my limit. I wanted to take the children and a few of their favorite things and never look back. I was willing to leave everything else.

It was about eleven P.M. by the time I drove away from a home that the children never returned to. I am not sure why the Officer told my husband they were escorting us to a shelter. I had not been physically assaulted. Apparently, he felt like we needed to be in a sheltered environment. All I wanted to do was get to the room my dad had reserved at La Quinta. I needed to sleep then construct a plan. I knew I needed to get as much information on record as possible, so I followed the advice of the Officer. The children were clueless and quiet. I found out later that Savannah was worried about being awakened because it was a school night. They never returned to their schools.

After a very long intake, it was close to two in the morning by the time we were taken to our room. It was impossible to stay another night at the shelter and follow the house rules. Sean was adventurous and hard to manage. I decided to leave the next afternoon. Somehow, in the midst of trying to leave, I locked my key in the trunk. I always kept a spare wired to the underside of the car but when I went to get it, it was gone. I sunk to the ground. I had a weak moment but in that moment I reminded myself that I was now in control. The key had been removed - so what? 

I called the locksmith then I called my beloved friend Pat. Without hesitation she offered us her home. As I made my way to Pat's I thought about the last sixteen years. Finally, something had taken my mind off the autism.

"I don't ever remember feeling this awake" ~Thelma

66. The D Word

I had done my best to do what I was supposed to do when a marriage is falling apart. I went to counseling. I followed the self-help advice. I listened. And I listened. And I listened. The record was most definitely broken.

I'm not sure who blurted out the D word first but I never let it go. D is for drama too, and there had been enough to make me want to return to Alabama where some of my closest friends lived. I knew that Pat and I would see each other so I didn't worry about missing her to terribly much. She supported my decision to move on with my life. She had been my sounding board for the past two years. I listened to myself as she listened to me. It was a mental process. Even though I had nothing to live on, I had to visualize and have faith that things could be more peaceful for me and the children. Once I did so, there was no stopping me but it would take some time.

I kept hearing him say:

"You are forty years old and have an autistic son! Just what do you think you're gonna do?"

I didn't know. I was scared to death. Before the final move there were some short term separations. Because of them, I could catch my breath and think. Everything was moving so quickly. The phone calls to my parents, his mother, the counselor, his friends, and anyone else who would listen to him continued. The dirty laundry had been officially aired. My parents were miles away in Shreveport. They felt helpless. They feared for me.

After a hellacious weekend, that Sunday night in April, I called my parents from my bedroom and said: 

"I'm ready to make my move. Call the police and book me a room."