33. Discovery

Savannah and Sean were growing quickly. We were outgrowing the apartment so we bought a house that was yet to be built. We found out about the government program in a roundabout way - through a friend of a friend. The contractor's daughter lived in Chatom.   It's a small world after all.  As a  qualifying family it cost us $1.00 to move in to our newly built home. We barely qualified. Long story short, the house was built and we were finally in a spacious house. My husband was reluctant but in the end he felt like it was the right decision.

It turned out that we had no business buying a house. I pushed for it because I couldn't see past the $1.00 price tag! Nevertheless, the house was wonderful because of the space. I loved the open living room with tray ceilings - my kitchen was modest but roomy enough to move around. We had to buy a refrigerator, though, as well as a lawnmower, a tisket, a tasket, and a green and yellow basket. We had never been in debt before but thought for sure we had a handle on it. We Discovered all right!

Savannah was in first grade at Wilson Elementary and Sean was still at Houston Elementary. Sean rode the bus to school so I stirred him first, very early. We sat in the recliner and rocked. It was a special time for us. It was a time for us to let the silence do the talking. Everyone else was asleep as the sun was rising.

Wee Hours

When I hold you to wake you at 6:00 A.M.,

Inhale your exhale,

Watch lashes brush

Sunlight over night -

It is I who am awakened.

Copyright 2000 - Peggy Putnam Owen

During those brief moments we had together while waiting on the bus, Sean and I connected like never before. We sat outside and sang songs. We cuddled and loved on one another. All we needed was a little peace and quiet. Who knew?

32. A Lot Like Dali

Summertime in Harlingen meant more time at home. It was often too hot to be outside. I loved our apartment but it was a cracker box. Although we were on the end, with an apartment behind us, on the side and one above us, I worried about my neighbors hearing the screams. I was amazed there were no inquiries, no expressed concern, no reports for suspected child abuse. I constantly braced myself for a knock on the door. I'm sure I mentioned the autism to my neighbors but still, a child was screaming at the top of his lungs on a regular basis. I was screaming too. 

Looking back I could have handled things so much better but I was hellbent on doing things when I wanted them done. There was no way autism was going to dictate my life. I fought it every step of the way. I dug in. I was not going to lose. There were many problems with my approach but the main one was that Sean was in the middle. 

I was fighting an abstraction. I was wearing myself out. I was wearing Sean and the family down. I was angry that it stole my son from me. It was a thief and I was going to take back what it took from me. 

I learned, years and years later, that in order to coexist with autism, I had to think in abstract terms. I had to treat it like a member of the family (someone a lot like Salvador Dali) with all of his surrealism, overtones and undertones. I'm having to learn to look at the behavior like I look at art and think, "What does it mean?" and say, "I don't care what it means, it is beautiful to me. It moves me".

"Surrealism is destructive, but it destroys only what it considers to be shackles limiting our vision." ~ Salvador Dali

31. Pouts and Circumstance

When it came time for Savannah to graduate from Kindergarten, we were as close to front row and center as we could get. By golly e-v-e-r-y-o-n-e was going to see us.

Now, Savannah hated for anyone to gush over her. Anytime she wanted to show us something she had created, she'd point at us and sternly say, "DON'T CHEER!" So, after her display of wonderful fantastic, brilliant creativity, all we could say in our smallest best monotone voice was:

"That's really nice, Savannah."

I did have a proud mother squeal that couldn't be matched.

We were proud parents of a child that didn't want any attention on her and she let everyone know it. Okay, she was developing a fever, I'll give her that, but dad-gummit, we were at her GRADUATION! I could finally let go of the past a little and rejoice that I was, "on the ball"!

Savannah was feverish but the attention was more than she could handle. How she ended up on the front row, I'll never know. She turned her back to the audience.

Grrr................................................................................................

I found myself trying to get her attention to give her my "straighten up right NOW!" look but she knew what to do. She kept her back to us the whole time. 

I'll never truly know why she acted the way she did. Maybe it was all because she was not feeling well. All I know is that this expression became more of the norm. Over the next two years, she took on more than any little girl should have. 

It was too much for a little girl.

30. Two Reasons to Smile

Here I am with the loves of my life. 

Harlingen, TX 

1999

29. Through Laughter and Hymns

I was encouraged that Sean was getting the early intervention that the experts said was so crucial. Savannah was in an inclusion class which meant she was in a classroom with typical children as well as special needs children. I wanted it that way so both teachers could observe her. As I learned more about ASD - Autism Spectrum Disorder, I realized that Savannah was somewhere on the spectrum. I didn't have her tested again like I should have. I wanted the teachers to tell me their observations. I bailed out. 

The three areas that autistic people struggle with are:

1. language
2. cognition
3. socialization

Savannah struggled with all three but mainly with cognition. Mrs. Livingston, the special education  teacher noticed it and called it a "processing deficit". She made no recommendations so I left it alone. Savannah was an "A" student. She was coping but little did I know she was the anxious type. No matter how much we tried to manage it, the anxiety in our home was building. 

Let's put on a happy face!

Living in Harlingen meant that we were very far away from family and friends. I didn't talk about my home life very much to my family. I missed them but I was thankful to have The Smith family close by. When Pat and I got together we naturally challenged each others sense of humor. We laughed more than we talked. It was my medicine. It was my relief.

We often sang Baptist hymns from our childhood church days. I was amazed at how we remembered the page numbers too and every verse from "Just As I Am". We sang them when the mood struck us -  partying or not, we sang till our hearts content. It was feel good music. Because I was standing an arms length from God, and looking the other way, the music kept me aware of His presence. I still wished he hadn't "chosen" me.

~no turning back, no turning back.

28. Chosen? Really?

With Savannah in Kindergarten and Sean in his first year of school at age three, I had some time alone to reflect on the past five years. They were extremely tough.  The previous seven years were too. I found a poetry website and began to write for the first time. I connected with people through poetry. It was surprisingly healing. I found autism support groups online and drew strength from them. I prided myself for being optimistic and strong. I talked about my experiences with autism with enthusiasm and truth. The more I talked, the more it hurt. The more I expressed that hurt, the more people said:

• "God chose you because He knows you can handle it."
• "Special children are a gift from God."
• "God won't give you any more than you can handle." 

And I thought to myself: "Dear God, if it is true what they say, I don't appreciate the compliment."

Bitterness and anger toward God began to seep in. 

27. Happy Faces

Sav in her made up super hero garb. Creative.

age 5

Sean with a bunch of beanie babies and Jackie.

age 4

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."