Missing Mortar

Like two live wires that touch,

there is a spark in your eyes

that ignites satisfaction

while you build your bridge 

that takes you to your other world.

May I follow?

Take me, hollow,

fill me with understanding 

as we reach the other side.

I know an answer is hidden

where the mortar belongs --

I would know it

of our connection was concrete.

copyright 1998, Peggy Putnam Owen

26. Building Bridges

Summer was hard but fun! Autism automatically qualified Sean for ESY (Extended School Year) so he went to school a little during the summer. The hours were shorter but at least he was going some. Since there is a little bit of natural regression with typical children during summer months it is apparently more with autistic children so the idea behind ESY is to close that gap. ESY is not just for autistic children, however. Whatever the reason, I was clapping my hands! I loved every break I could get because I had not quite gotten a handle on how to communicate with Sean effectively.

Savannah had graduated from preschool (or so I heard) and although her teacher recommend that we "hold her back", I just couldn't see that happening. I was ready for her to have a full day of school. Sister, please! Once  my husband and I went to the year end play, to see Savannah perform (and save face, as if), I wanted to never see those people again. It wasn't anything they did, it was just that the year had been so hard and embarrassing. She was going to go to Kindergarten at the same school as Sean.

During the summer we played hard! We went swimming at the apartments. Even Jackie went swimming with Sean. I'd bring him in, put him on spin cycle and dry him out.  That was the first real time I solidly stood my ground with Sean. I would try to explain, "If you take him swimming, you will have to wait until he's dry!" I was learning to be one Big Enchilada! Sister, please!

We hung out at Pat's and went swimming, made the occasional trip to Mexico with Pat (cause Mama was out of Sol) and sometimes made a trip to the beach with Pat, her son Ian and Alyson. My husband was working hard but enjoyed the weekends with me and the kids. When we were at the island, he was glad to have some down time at home alone. 

Autism seemed like Sean's imaginary friend. I'd watch him withdraw and cross over as if crossing a bridge. A "mental" bridge. Even though I know he didn't ask for autism, from the outside looking in, it seemed like he couldn't wait to cross it and stay away for awhile. He was comfortable there. The more we tried to pull him out of himself, the harder he worked to protect it.

25. My Sweet Collector

As hard as it was to figure out how Sean's mind worked, I was fascinated by the  autistic behavior. I often watched him work. He was a very busy little boy. He was happiest when he stimmed. He'd squat, knees spread wide with his bottom nearly touching the ground and gather sand or freshly mown grass in a fast scooping motion, over and over again to collect more with each grip. He held it up, released it a little at a time and stared past it as it trickled. It was hypnotic.

He loved Q-Tips, sticks and straws. 

When his dad threw the straws into the ceiling fan to scatter them, he'd squat to collect them sometimes according to color, all with super quick speed. He had a system - a rhythm - a way to make autism look appealing.

Sean in Harlingen at age three.

24. Signs and Symbols

I was not a direct victim of autism but I felt very victimized by having to live in it's periphery. It was hard enough for me living alongside these symptoms (in varying degrees) much less for Sean having to live with these symptoms:

• Lack of or delay in spoken language
• Repetitive use of language and/or/motor mannerisms (hand-flapping, twirling objects)
• Little or no eye contact
• Lack of interest in peer relationships
• Lack of spontaneous or make-believe play
• Persistent fixation on parts of objects
• Difficulty with transitioning 

I watched the frustration build in Sean with very little skills to help him. He couldn't speak. He didn't have a definitive way to communicate so all that was left to do was throw down. Sylvia introduced new ways for Sean to communicate. He began signing a little but it wasn't used very often because they were trying to get him to speak. They used Board Maker picture symbols to make picture schedules to help with transitioning. The schedule is designed to show him what is coming next much like the one below:

FINISHED POCKET

As each activity was carried out, Sean would remove the velcro'd symbol and put it in the "Finished" pocket. Then he would move the next symbol to the top. The schedule could be as detailed as it needed to be. I was amazed at how this worked. He was a long way from being liberated but at least he knew where he was going one schedule at a time. With the sign language and symbols, the days at school were more calm. I'm not sure why we didn't use the picture schedule system at home. It sure would have helped. 

Sean was happier. He had new skills to help him communicate. He still stimmed quite a bit by trickling linear things like Q-tips in front of his face and watching them fall. His dad would throw them up through the ceiling fan. As they scattered, Sean (in a crouched position) immediately collected them in a matter of seconds. I remember the day I introduced him to Q-tips. I was so frustrated I opened up the box I had just purchased and threw a wad of them on the floor. He was satisfied. Stimming was something the school wanted Sean to do very little so they used it as a reward. At home, my motto was: 

"Do it, do it, do it till you're satisfied, whatever it is!"

23. Like Father Like Son

With Sean starting school at the tail end of the school year in mid April of 1998, we were rushed with information about autism, parent rights, IEP's (Individual Education Plan), inclusion, ESY (Extended School Year) and deadlines. We had in-home training too. Sean's new teacher, Silvia, came to our home to explain details about autism, terms related to autism and what is to be expected. As my husband and I were listening to the crash course in autism, I remember he asked questions about genetics. As he read the signs from the list, I believe they felt hauntingly familiar to him. He laughingly said, something like, "I think I have this!" And I laughingly said, something like, "I think you do!" 

That was pretty much the extent of our conversation regarding his having mild autism. However, his statement had me thinking about our life since we were married in 1986. Although there is no official diagnosis that I am aware of, based on my experience with autism and knowledge today, I believe his statement to be true. I began to feel boxed in by autism. Why did this happen to me? 

22. Clueless

Yes, you read it correctly, due to - apparently, the lack of checking the backpack for important dates - we missed Savannah's Preschool Graduation! Being a preschool teacher of the same age, I can't imagine why I wasn't called. I guess they thought we would SURELY show up any minute to our child's graduation. Not us. Nope. I was sitting at home alone watching VH1 and occasionally dancing to songs like, "Real World" by Matchbox Twenty. I'm not kidding.

~I wish the real world would just stop hassling me - Matchbox Twenty

My, "you're a bad mother" voice rang in my ears for years over this. Savannah didn't have to say a word even if she knew to. Not once, did she ask, "Where were you?". Not once, did it dawn on me that that wasn't normal.

21. Extremely Absent

By 1998, Sean was in school full time. It was still hard to deal with him in the hours before bed. I'd found out what I was made of. I was far more patient than I ever realized even though thoughts of manslaughter ran wild in my head. It seems dramatic to say but at the end of the day I reveled in the fact that I hadn't killed him. I also reveled in the fact that at the end of the day I loved him till my heart hurt. We lived in extremes.

Savannah was in preschool in the four year old class. I'd drop her off in the morning; say some endearing words, make sure she had her lunch and trust that her day would be great. I was glad that Savannah had a place to go. It was convenient that she lived in her own little world. Because of it, she didn't care that we accidently missed her graduation. I took on some looks from other moms when I picked her up from school, but Savannah just stared right through me.

Back on Track

I watched my little boy leave tracks along the sand.
The waves and depth were telling him to swallow sound,
to size the obscure sea, to search, to understand
the constant ebb and flow of all things lost and found.


The waves and depth were telling him to swallow sound.
He mutely made his way to unfamiliar land.
The constant ebb and flow of all things lost and found
began to grasp the fingers of his empty hand.


He mutely made his way to unfamiliar land.
My shadow echoed him, then keenly turned around,
began to grasp the fingers of his empty hand.
I pulled to make him stay on soft but solid ground.


My shadow echoed him then keenly turned around
to size the obscure sea, to search, to understand.
I pulled to make him stay on soft but solid ground.
I watched my little boy leave tracks along the sand.


copyright 2010, Peggy Putnam Owen

I wrote this poem last year. It was inspired by the photo in the previous posting. The pantoum is a form of verse that uses repeating lines throughout the poem. Writing is therapeutic. I'm not out to win any prizes!

20. Therapy

Sean was a month shy of his third birthday. At age three he could enter the Early Intervention Program full time at Houston Elementary. With Savannah in preschool, and Sean in school, I was hoping to have some downtime and recover from the drama over the years. It had been a whirlwind.

Sean began medication right away. We gave him Tegretol and slowly watched him return over a couple of weeks. The mood in the house changed. He could look us in the eye for longer than a second. He was happier. The tantrums were still ever present but at least there was help! He began to eat better, it seemed. When he was a baby he ate everything. He was not a picky eater until the autism started to take over. Then he only ate linear yellow foods such as french fries, grated cheddar cheese, french toast cut into strips, bacon. If I offered him a chunk of cheese he wouldn't eat it like he did before the autism. When I grated it, he ate it by the handful. I learned to be creative.

We were on our way. Life was still as hard as ever but the light was on. There was a lot to learn. The drive to educate myself was super strong. I began to write poetry. I could express myself without speaking directly to anyone. I loved to write poetry then and still do. It is pure therapy.

Sean at South Padre Island - age 3

19. In the Report

"Sean appears to have very little control over his emotions. In one 45 minute session he displayed shyness, hyperactivity, tantrums, crying, self-stimulating behavior preferred by Sean is trickling Q-tips, sand, or other materials in front of his face. He will then pick up the material and slowly trickle it past his eyes, again. Sean will do this activity by the hour. Sean indicated he understood a question with a nod, once. He usually reacted to being called by name facing the person, but not always. Sean has a very short attention span, except for the self-stimming behavior."

Glossary Term: Stimming

Definition: Short for "self-stimulation", a term for behaviors which stimulate one’s own senses, such as rocking, spinning, or hand-flapping.

The report is intensive and thorough. He was mostly uncooperative so I had to report on many of the behaviors used in the Battelle Developmental Inventory. It was reported that their "observation appears to confirm most of the reported behaviors." The report states that Sean demonstrated significant emotional/behavioral deficits in areas of: tantrums, feeding, dressing, play and language.

The Result:

"Based on the findings reported in The Comprehensive Individual Assessment, Part I, the student appears to meet specific eligibility criteria for the following impairments: NCEC (Non-categorical early childhood) - Autism/PDD (Pervasive Developmental Disorder)"  

With confirmation from Neurologist Dr. Seals, Sean was officially Autistic. 

Damn.

18. A Silent Message

My honesty was disturbing to my husband to say the least. I think he understood or I always thought he did until years later. But at the time, he helped me by checking in on me throughout the day. His calls gave me comfort. He was supportive and understanding. Come Friday night, though, I was at Pat's. It was my only break.

We began attending services at First United Methodist Church. I was committed to finding peace for my family which meant learning how to maintain balance in every area: mind, body and spirit. I longed to be closer to God. I had a few questions. I needed to understand what was happening to us. At first I was tip-toeing around the subject when I prayed. I was careful. He was GOD and I was a sinner. I was afraid of Him. I felt like Dorothy in front of The Wizard when I prayed. My perception needed tweaking.

I loved my new church. I was listening, really listening and couldn't wait to listen some more. Savannah and Sean were in good hands in the nursery. Sean didn't tantrum as much in new places. The nursery was engaging and colorful. Besides, he had Jackie (pronounced, "Gackie") with him which was a sure fire way of knowing that everything was going to be all right! Jackie was his sidekick - a stuffed jackrabbit my parents gave him when he was born, two days before Easter of that year. Jackie was a part of our family. With Jackie tucked under one arm and a pacifier (pronounced, "paffy"), Sean seemed good to go aside from the transition from my arms to theirs. Each time was harder. Maybe if we attended every Sunday it would have made the difference. 

One particular Sunday I took him to the nursery as usual. I put him down and he stiffened and began to cry. He appeared different. Either that or I was paying closer attention. I saw him clutch Jackie ever so tightly, walk to a corner, take a deep breath and sigh. I watched him resign himself. Without a single sound I heard him say, "Nobody gets it." I didn't process it all right away. Should I stay or should I go?

It seemed like the sermon went on and on and on. I think this was the day I stopped listening.

17. It's a Good Thing He's Cute!

I know you've heard the saying, "It's a good thing he's cute!" Trust me when I tell you, it's a good thing he's cute!! I was fortunate that he was cute and pleasant when he wasn't having tantrums. He was my funny little guy. He was admired by strangers because he was so beautiful and his smile was addictive. And I would say, "It's a good thing he's cute!"

He was losing language and showing signs of Obsessive Compulsive Disorder also known as OCD. He would bring me a video tape of "Winnie Pooh" as he would say, so, I'd go to his room and put it in. A minute later he would bring it to me again and say, "Winnie Pooh". This went on again and again until he was in a full blown fit. We were living in circles. Every day we ended up in a wad on the floor, exhausted.

Circles are still very present in our life today. Circles are safe and secure. Circles are predictable. Circles are sometimes boring. Circles are sometimes maddening. Circles are predictable. Circles are safe and secure. Circles are still very present in our life today.

After each tantrum, he seemed fine. He acted like nothing even happened. I was constantly amazed. I began to look up seizures thinking maybe he had no memory because of possible complex partial seizures. It didn't fit. But the abrupt shift in mood was so bizarre. I couldn't shift so fast or easily. I knew though, that these moments were critical to our getting through the day without thoughts of windows or Mister Spoon. We were up and down and all around and around and around.

Our appointment for testing was on the books. An appointment with Neurologist Dr. Seals from San Antonio was on the books.

Where was Savannah? She was still in her own little world. Unfortunately, I was grateful for it.

16. Crash

Winter had come and gone. Spring had come earlier than I was used to but I was ready since the beach was only an hour away. Pat and Jack owned a condo on South Padre Island so, one weekend plus a Sunday night , the kids and I joined her. By this time Sean's tantrums were so bad that I worried about "snapping". I was constantly talking to myself, telling myself to "take it easy", "stay calm", "it will be over soon", "hold on". He went on for hours and then he would crash. Speaking of crashing, I admitted to my husband that when I reached or almost reached the point where I'd had enough, I just wanted to throw him out the closed window to make it stop. My love for him stopped me time and time again. I had to talk about it. I was always talking about it. I knew that if I held it in, it just might happen. So, I told any one who would listen despite sounding like a horrible mother. I had to protect my son.

While at the beach it was a matter of time before Sean threw his usual son-of-a-bitchin' tantrum. When it was over, Pat and I had a heart to heart. It was the morning we were leaving. I'll never forget it. I was wondering out loud what could be wrong when she said, "What about autism?". I immediately said, "No, Savannah was tested for autism. She didn't tantrum. It doesn't look the same." Pat said, "But maybe it is".

We left the beach and went our separate ways. My mind was spinning. My stomach was in knots. AGAIN? We dodged this bullet already!

I pulled up my big girl panties (a-gain) and first, accepted my friend's gently expressed suggestion, then when I got home I immediately called The Board of Special Education.

With my heart pounding, I said, "Mrs. Lancaster, remember me? I need your help. I love my son but I am afraid that I am going to hurt him."

15. In Search of Happiness

In December of 1997, Nan, who still lived in Chatom, came to visit her brother Jack and Pat. Their parents, Nan and Chuck Smith are Winter Texans so they live close to Pat and Jack in the Winter months. My family was always included in the festivities. I have fond memories of hanging out with The Smith Family.

~Way down here, you need a reason to move... J.T.

Here, we have obviously found our reason to move. I think the inspiration is in my hand! When we all came together, my worries were at bay. 

Happiness. I was always in search of happiness. I missed it terribly when it was gone.

14. Excuses Excuses

So by now, Sean was throwing down like a rock star on a daily basis, ahem, excuse me, I mean, every-other-hourly basis and my marriage was turning into an unwritten country song without my awareness. The distractions of our first summer, the changing of the weather and the holidays in Harlingen were enough to mask the truth.

My friendship with Pat continued to grow. Her daughter, Alyson, Savannah and Sean played together. There was enough room in the house to feel like I was on vacation. We lived in a cramped apartment but I liked it. I was just glad to be in the city.

We did have fun as a family. There were rough patches like in any marriage but we carried on. I began to visit Pat more often. I'd venture to her house in McAllen/Pharr every other weekend, leaving the children with their dad. I'd go to "get a break" from the all out hissy pissy fits Sean was mustering up every single freakin' frackin' day. I was still thinking that because he was two and because we didn't know how to handle him while he was two, that it was a phase. I was sure that any dingity dang-it minute, it would be over. He was approaching three. He just needed to m-a-t-u-r-e, don't you see that? Remember what I previously said about denial? By this time I had it tucked into every nook and cranny around the house. I'd open the fridge and it stared me in the face. So what if there was more and more beer each week? It was cheap in Mexico. My head was so far in the South Padre Island sand that no amount of digging could uncover it. I wanted it there.

Pat's house is a ranch style house with long breezy halls, a spacious living room and a Central Vac that could put your Dyson to shame. I think. The living room leads to the hot tub and pool. There is landscaping and patios on three sides of the house, one with a grill - home to Jack's Ribs. There is a key lime tree all the way to the road which was a BONUS! We would hike to it - seriously, it was sort of far - and we'd pick limes for our limeade. HAHA! Fooled ya! Jack's Margarita's! I loved my visits. I was never made to feel that Sean was a burden but I was beginning to feel he was a burden. I was growing more and more comfortable with making excuses.

Sean's "strong-willed spirit" would soon have another name.

13. She's Coming Undone

Savannah was not autistic! Truth be known, I was so prepared to hear that she had autism that I began to feel confused by it all - Aunt Merry Ann's observations, Savannah's quirky behaviors, comments from friends. I had to go back to making excuses for Savannah. She was different  but I loved her no matter what. I was her protector, remember? But I wondered, Just how can I protect her when I don't know what it is I'm protecting her from? There was something mysterious. It was like seeing something in my peripheral vision but never being able to identify it.

It was a mystery but mystery aside we went on with our lives. By Fall we were adjusting to life in Texas; making trips to Progreso, Mexico just forty-five minutes away. It was a good meeting place for Pat and me. We developed our friendship by seeing each other nearly every week. We enjoyed authentic Mexican food, margaritas and shopping. Life was good. Life was good as long as Sean's rock star tantrums were over and done as quick as I could say, "no-no meets consequence". I could never make that happen. I was beginning to harbor the blame for his uncontrollable behavior. I was feeling inadequate as a mother. I was embarrassed in public. I was judged by Walmart shoppers and Micky D's Drive Thru employees and I gave a damn. Sean was not the only one coming undone.

12. Drum Roll Please

Summary and Conclusions:

• This student does not demonstrate significant educational or developmental deficits.
• This student does not demonstrate significant emotional or behavioral deficits.
• This student does not appear to meet specific eligibility criterias for special education services.

"Using the Childhood Autism Rating Scale, Savannah had an obtained score of 15 which indicates that she is non-autistic."

The Slosson Intelligence Test was given which requires the student to respond verbally to a series of presented questions. The test places heavy emphasis on language skills and provides a measure of intelligence. With a chronological age of 3, the student achieved a Mental age of 3-9 and a Deviation IQ of 85. *Savannah is very verbal, but did not warm up to this examiner. In my opinion, her obtained IQ is probably lower than her actual capabilities.

*As her mother and witness to her daily interactions, it is my adequate opinion that you are correct, Lady Examiner. Thank you.

I trusted the report but time would tell if Savannah would fall through the cracks.

11. Adequately Adequate

Date of report: June 30, 1997

Reason for Referral:

"Savannah was referred for a comprehensive Individual Assessment by her parents. This assessment will aid in determining if an impairment exists that may be affecting school performance to such a degree that there is a need for Special Education Intervention."

Assessment Procedures:

"The student was assessed using standard procedures for all tests. Conditions for all testing sessions were considered to be adequate. Distractions were minimal and insignificant during testing. Rapport was established and maintained adequately for testing. Adequate eye contact was achieved and maintained during testing. In general, the student appeared cooperative throughout testing and did appear to exert an effort to respond appropriately. Overall the examiner(s) felt that the tests were a valid estimate of current functioning abilities."

My notes:
It is my adequate assumption that an adequate valid estimate was made in the areas of:

• Sociological
• Physical
• Language
• Speech
• Emotional/Behavioral 

10. "Let Us Know"

I was determined to have a wonderful life. It was something attainable in movies and I was hopeful that my family life was going to be just like in the movies. All was forgiven and forgotten and denying that I was in denial became my norm. I was A-okay. I was fantastic. Marvelous. Peachy. The tropical environment of Harlingen and the pool at the apartment complex was enough to take the focus off of any problem. I dove back into the idea of a new beginning. I was feeling it.

Several weeks into the new place, I established a pediatrician and called The Dept. of Special Education to make an appointment to have Savannah tested for autism. Of course, I had to bring Sean along but I was dreading it because his tantrums were unpredictable and out of control. They were seriously over the top. They had been worsening over the year and becoming more and more unmanageable although I would never admit it. He was TWO and that is what two year olds do - they tantrum.

When we were at The Board getting the evaluation wrapped up, Sean began to pitch one of his fits in his stroller. I did the best I could; went through all the steps to temper the tantrum to no avail. I was full of apologies so I tossed out a few with a faint smile as if to say, "What's a mother to do? He's two".

When I was leaving, the psychometrist said, "If you ever need help with him, let us know".

"Let us know"? I smiled and paused when she said that but thought nothing of it until a year later.

9. In the Game

Not everyone was delighted about the move. The transition for my husband was unwanted and difficult even though it was a good career move. It took three days to drive from Chatom. We spent two nights on the road and a third night in a hotel in Harlingen. Sean and I were sick with severe colds. Savannah was along for the ride. As soon as I could say, "thank the Lord we made it", my husband and I began to fight over man and wife issues. After being forced to stay up all night because of a very loud television, I began to wonder how this was going to work. I was scared. The excitement of a new adventure turned to fear. I was devastated. All of our possessions were on the moving van to be delivered that day. I made the decision to take the high road. I managed to calm things down by apologizing for not being sensitive to his needs. Hey, it's a fact that everyone has a point of view, it's just that not everyone is aware of it. I began playing the game. It is never good when the game begins. 

hind·sight 

n.

1. Perception of the significance and nature of events after they have occurred.

2. The rear sight of a firearm.