44. Setting Limits

Obsessive (thought) Compulsive (action) Disorder can be a common comorbid condition with autism. Sean was not officially diagnosed with OCD but it was evident that he had behaviors that looked like it. Sean's obsessive compulsive behaviors changed every few months. As the obsessions progressed, I began to wish for the replacement to reveal itself. I thought maybe I would be able to cope with it better. 

~be careful what you wish for ~

We had a good number of video cassette tapes in our house and one day, you-know-who, discovered them. He began lining them up, end to end, starting in the living room and moving toward the hall. We were used to objects in chosen places like the Sit and Spin that had to be in the center of the room (for about two months). I used to mess with Sean and move it a few feet toward the wall. He would notice it upon entering the room and quickly move it back.

As the days wore on, the line remained. Sean would squat down, squint one eye and look all the way down it to make sure the line was straight. If anyone of us even slightly bumped it with our foot, Sean came running from the other room  in a bit of a panic to correct it. By this time we were tip toeing over it.

The door that entered the garage from the house was also an object of obsession. Sean wanted the door open at all times if he was inside. If he was in the garage, he was fine with having it closed.

He built the video cassette line almost all the way to the door leading to the garage. When the door was opened, it made the tapes shift. This sent Sean into a wild man fit. He screamed and franticly began putting them back together. He then tried to open the door again; therefore, shifting the tapes - again. We had to keep the door closed because of the heat but he needed it open. We had one little frustrated boy on our hands.

We were all asleep one night when Sean came to my bedside. He never came to my bedside. He woke me up and said, "door?", "door?" I said, "No no, Baby, let's go back to bed."

The next morning I managed to get the kids to school. I went to my part time job in the same office as my husband's. I couldn't get Sean's desperation out of my mind. I couldn't shake it. I began to cry at work so my boss gave me permission to go home. He knew of our hardships with Sean. My husband picked the children up from school so I could have some alone time at home. My heart ached for my son. He was stuck - again.

When my husband came home we made the decision to pick up all the tapes. As we were doing it, Sean was crying as he hung onto his dad's leg. He gave him the most desperate look I'd ever seen and pleaded with him to leave the line alone. "No Daddy, No!!"

We had to follow through. Sean was forced to move onto something else so we gave him - some - bathroom tiles to make patterns with in the hallway. Through this heartbreaking experience we realized the importance of recognizing when a new obsession was beginning, setting limits and using redirection as much as possible so that Sean could never ever paint himself into a corner - ever again.

43. Seen and Not Heard

"The mind may wander, but let not your senses wander with it. If the senses wander where the mind takes them, one is done for." ~Mahatma Gandhi

I was doing the best I could but felt it was never good enough. Two steps behind turned into three on some days and I tried not to give a shit. I tried to resign myself but was forced to a-l-w-a-y-s face the "bully". Autism was most  definitely, definitely the bully. As my feet hit the floor each morning I prayed, "Oh God Almighty, help me stay cool, calm, focused and driven. Give me peace somewhere in between." I chose to accept that He didn't hear me as opposed to Him ignoring me.

The energy in the house was tense to say the least, but I tried to maintain, in autistic terms, a clear connection with my family. I wasn't doing so well. I spoke little of the problems in my marriage to others, but the problems in the home were apparent to all who lived there. We didn't hide our discontent from our children. We fought in front of them as if they couldn't hear us. As if they weren't there. We were maniacs.

My mind wandered as far as I let it go. Thankfully, my senses reeled it in. My senses saved me in the end.

Seriously though, sometimes parents should be seen and not heard.

42. Observations

One Saturday afternoon I was sitting in my husband's recliner when Sean walked over, picked up a red Sharpie on the side table and began writing an "S" on a piece of copy paper. Copy paper was Savannah's favorite accessory so it was within her reach from any part of the house at any given moment.

I had never seen Sean write before so I excitedly asked, "Oh Sean! Are you writing your name? Wow!" I called my husband over to join in the praise. Sean looked at me with his big hazel eyes and gave me a sideways grin. The letter was backwards but the form was excellent. 

Sean didn't say anything. His language goals were the hardest to reach but he was writing! He wrote the next letter which I expected to at least look a little bit like an "e" or an "E" but it was a stretch. It was clearly a letter.

With my head cocked to the side a bit I said, "Sean, wow! You wrote another letter in your name! Look at THAT, Dad!!" I was puzzled. I exchanged glances with my husband. I was smiling like a proud Mama always does (except around Savannah cuz she's not having it). Sean put pen to paper again:

Sean gave another sweet precious darling Mama's boy look as if to say, "Who said I was going to write my name? Hmm?", I thought, 'Alright! What the hell is happening here?'. I kept my cool. I knew what was coming but I was trying to process the how-in-the-world thought while smiling all the while. My husband was just as puzzled. Sean continued with great pride.

Alrighty then. There it was. I kept my game face on and praised him as if he had written "I love you, Mom!" Okie Dokie, so yeah - Sean's first written word was "SHIT" in permanent ink. That's my boy!

He quietly turned the paper over and began writing again. I wasn't going to be fooled this time but he did write his name:

By this time I was still on the "shit" word he cleverly spelled out, so after he finally wrote his name, I very likely said, "Yeah Sean, that's alright, I guess." I was still in a sort of, proud-but-pissed state of processing!

Early Monday morning I called his teacher to ask about the word and she calmly said, "We've seen it." I said, "Well I just wanted you to know that we didn't teach him that!!" Of course she knew we hadn't. I began to think he had seen it written somewhere because of the distinct underline that came with it. I asked the bus driver if maybe it had been written on the bus. I thought about the bathroom, the gym, everywhere. It remains a mystery because Sean wasn't talking.

I realized from this experience that Sean was far more aware than we ever thought. He knew to look for a reaction. He was watching for one through his big bright innocent hazel eyes. 

Um hm.

41. No Peace in the Valley

By now it was safe to say that I had accepted that I didn't have "normal" "typical" "normal" children. The jury was still out on Savannah and maybe that was God's way of giving me a breather because Sean was all I could handle at the time. He sucked the living joy out of me each week until my Girl's Night Out with Pat and Friends. I lived for the weekend. TGIF&S!! 

I was really struggling with the "whys" in my life. It wasn't so much about me as much as it was about my children and their challenges. I often thought back to when Savannah was born when my reaction to seeing her for the first time was so troubling to me. The pain of that day was always so vivid. I had brief moments of feeling like I had had a premonition but blew it off by saying that this is life and all people suffer with something and heartache is a part of living. I was constantly measuring my life by the life of others. I was always reassuring myself by thinking and often saying out loud, "It could be worse. It could be worse, couldn't it?" 

Mothers fix things, damn it! Mothers protect their children and they do it quickly - not over the course of many years. I wanted Savannah and Sean to be normal. I wanted my marriage to be happy. I wanted positive answers for the  numerous questions my friends and strangers always asked me about autism. I wanted God to explain to me why I was chosen. I cursed Him when he didn't. I shook my fist. I raised hell and then some. I needed Him to fix my kids. I needed him to fix me.

My inner dialog kept me confused. I was always so confused.

What Goes Up Must Come Down

(Peace in the Valley)

Like boulders lifting peaks,

capped in an avalanche-waiting-to-happen,

(frozen in the pose of 

afraid-to-move)

I, too, stand under a freak-of-nature

that's made my son 

the king-of-the-hill.

He shakes the peace-in-the-valley

with his rain(man) stick,

makes it known that

life-isn't-perfect and

all-is-well

only in Heaven

where the lion-and-the-lamb

sleep with Goliath,

who once made certain there was

no-rest-for-the-weary,

quickly discovered though,

the-meek-shall-inherit-the-earth.

The peak-of-my-experience

loads his slingshot with his

diamonds-in-the-rough,

slays the blessing-in-disguise.

He comes down the hill as the

Little-Boy-Blue,

plays Gabriel's Song.

The sheep graze in peace

and the wolf goes home.

copyright 1999, Peggy Putnam Owen

40. Sensory Integration Disorder

Autistic people have varying degrees of sensory issues. For Sean it was mostly tactile.  Children gradually develop tolerances to unpleasant substances on their hands as a part of their natural development but Sean was hypersensitive. Sylvia worked on Sean's sensory/tactile therapy weekly. As a start, she had him "play" with shaving cream. He slowly learned to tolerate it. On the other hand he loved the tactile rewards such as the bowl of raw rice or beans. He loved playing with sand and water. At home he played with the hose in the driveway and flour in the garage. 

Week by week, Sean's acceptance of certain textures on his hands improved. Luckily, he didn't have an unusual sensitivity to sound or busy stimulated environment. As with any typical person, he was mostly affected by the length of time he was exposed to particular sounds. Overall, he coped with his sensory issues rather well.

I noticed that Sean wasn't phased too much by pain, though. It actually briefly caught my attention (even before Sean was diagnosed) when "Mister Spoon" was used early on - before I knew better - before I missed him and hit myself - before I knew it stung like a mother. 

One morning I was stunned to find that half of Sean's big toenail was nearly off. I found it that way! He didn't come to me and point to it. He didn't cry. He acted as though nothing happened. I kept looking back and forth from the toe to his face, like, "Why aren't you reacting to this?" 

I am ashamed to admit it, but I put a bandaid on it and sent him to school. I suppose the same question could have been applied to me, "Why aren't you reacting to this?" I don't know why I didn't take him to the doctor right away. I was freaked out and in shock, I guess. Who knows? It wasn't a problem to take him but instead I sent him to school for two days. When I told the teachers, I focused more on his lack of reaction instead of the physical problem. I was unable to look past his inability to feel the pain. Or did he feel it and didn't know how to tell me it hurt like a mother? Regardless, I should have taken him instead of sending him to school two days with a bandaid and a closed toe sandal! I knew what the doctor was going to do and I couldn't handle it. His dad was in the room when they gave him a shot in the toe and removed it. I heard him scream then. What had been the difference? Why did he react differently to the unexpected injury and the treatment of the injury? Was it strictly the sight of the needle? Or was it because the pain was deeper? From that moment on, I knew, in a way, I had to be the one to feel his pain for him. 

Sean's inability to process pain was due to Sensory Integration Disorder. 

How ironic was it that I had to be his pain sensor when I was barely able to sense my own?

39. Content To Be Withdrawn

While I was honing my senses, Savannah was honing her artistic talents. She was very expressive and animated much like the cartoons she watched every day. She began to draw her own versions. Even though children naturally love cartoons, I think Savannah found a safe place to hide in them. She had always been "in her own little world" to a certain degree but it was almost like she took on the life of the characters in the cartoons because she felt safe there. I noticed this as early as age two when we were still living in Chatom. Every time Nan came to visit, Savannah stood firmly in front of her, looked up at her, pointed and gave a matter of fact, lecture-like speech. She wasn't angry. It was the same speech every time - no variation. We were quite entertained. It became a guessing game to figure out what she was reciting. It took months.

One night Savannah and her dad were watching Pinocchio when he jumped up and excitedly called me to the living room. He said, "I finally found it!!":

Jiminy Cricket's Speech (@ the 1:00 mark)
"Now, you see? The world is full of temptations. Temptations? Temptations..."

I couldn't wait to tell Nan! Why Nan was "chosen" as the recipient of her lecture on becoming a real boy and temptations, I don't know, but it sure has made a wonderful memory. In hindsight, I see it as the beginning of Savannah's obsession with cartoons. She lived in an animated world back then and still does to a degree. 

Savannah began to draw her own characters and add them to her version of an already written story. When the "Savannah" character came to life on paper, there was no stopping her. She drew herself further into her own little world and she was perfectly content.

38. Honing My Senses

It was interesting how quickly we learned to pick our battles with Sean. Most of the time I had to decide right there on the spot whether or not I could let something go without consequence. Much of the time it came down to just how angry I was at the autism that day. Some days I was more forgiving. Some days I stared it down like I would any son-of-a-bitch.

I used to let the kids have popcorn while watching movies in the room they shared. One day, out of the blue, Sean "needed" the bowl to stay on his table for a period of days. I didn't care. That was the least of my concern except when we were expecting company one afternoon. I was straightening up a bit so when Sean wasn't looking, I quickly grabbed the (rather large aluminum) bowl with leftover popcorn seeds in it and put it behind my back. I was ever-so-carefully backing toward the kitchen when Sean heard the seeds tinkling in the bowl. He rushed around me to get it, and I let him take it. As much as I wanted to snatch that bowl from his obsessive little hands, I didn't want to spend the next few hours in the boxing ring with him. 

I always struggled with how to "be consistent". I knew what to do but didn't know how to work around my energy level and The Master Manipulator's hellbent autistic ways. I didn't know how to be successful. It took me a while to even begin to sharpen my "thinking-on-my-feet" skills, but I finally did. At this point, about every six months, I was one step behind instead of two!

I started to pay attention to most everything I said to him. Being a highly emotional person, I'd shout extremes like: "You won't get any McDonald's fries for a month!! BUSTER!" That really registered, didn't it? I paid attention to how absurd I sounded. I was listening. It was so hard to calm my emotions when dealing with the autism but even if I couldn't do it, I knew I needed to always try. It was one of my earliest goals from Autism 101. Autistic behavior appeared to be forever changing and often looked like controlling behavior instead - but once I started honing my senses - in all areas of my life - I could decipher between the autistic and the control-freak. It was time to stop being so forgiving. It was time to take it back. I had given away my power. 

"We can't solve problems by using the same kind of thinking we used when we created them." ~Albert Einstein

37. Sean's Earliest Goals

The earliest IEP was full of goals that pertained to basic needs like:

• Engage in cooperative play
• sing and dance to music
• follows rules in imitation
• Sean will be able to make smooth transitions between activities with the use of visual cues provided by transition objects or pictures.

A transition object is something like a hat for when it was time to go to P.E. or his lunchbox for when it was time to go to the cafeteria. 

They worked on food textures, dressing and verbalizing toilet needs. They also worked on matching letters to his name, copying a pegboard pattern and copying simple pictures like a tree, man, sun and house.

Sean had a journal too. Each day he was able to express himself using paper and pencil. These are some of his earliest entries:

Sean scribble scrabbled a lot in the beginning. 

Page after page of intense scribble scrabbling.

Some shapes come into play.

I believe Sean was influenced by the swirl patterns on our furniture.

I see flowers, don't you?

Using good words here!

What does it mean?

I don't care what it means - it moves me!

Definition!

Daisy Doll!

Sean would go on to learn to refer to himself by name, "Sean", identify happy or sad pictures, increase repetitive and expressive language and verbalize, use gestures or pictures to ask for a specific object.

Sean's goals and successes were many. I can never thank his teachers enough for their devotion to Sean, their apparent love and patience above all patience. Thank you Mrs. Sylvia and Mrs. Livingston as well as their hard working assistants. I owe them the moon.

36. Keeping the Peace

Although Sean was learning how to manage his autism more every day, he was also learning to be a master of manipulation. Sometimes I was not able to tell, just yet, which behaviors were because of his disability or a result of his Master Manipulator capabilities. It upset me and wore me out mentally. I was always guessing and trying to parent him accordingly. I didn't want to give in but I wanted to cut him some slack if it was a behavior that was out of his control. 

Savannah soon learned to be the peacemaker. If she had something Sean wanted, she gave it to him to prevent a meltdown. One night my husband and I were sitting in the living room when Savannah ran in with Sean two steps behind (for once). They stopped in the middle of the room and tied up. They were laughing but he was clearly trying to take the beanie baby away from her. He succeeded. She didn't even try to get it back or  say anything about it at all. I said, "Whoa, Savannah, Honey, don't let him take things away from you!" I said, "If you want it back, get it back - we've got your back!!" The next thing we knew, they were in a blur on the floor wrestling for the beanie baby. Seconds later, her hand shot straight out of the blur holding the beanie baby! "I GOT IT!" Up to that point, I never paid attention to how he treated her or how she allowed him to treat her. He wasn't being mean, he was allowed to get away with it and she was accepting his dominance over her. I had work to do. I began building their relationship. I knew he was going to need her. I didn't want her to think of him as a burden or a pest. There were plenty of places we couldn't go because of Sean's tantrums but Savannah was always told it was for another reason. I didn't want her to resent him.

One afternoon I took them to the park and then for ice cream. We played for all of 10 minutes when Sean began to act out. He wanted a swing or something he couldn't have because another child wanted it and Sean had already had a turn. Something very typical! Anyway, Savannah was up and down and all around that park having a wonderful afternoon. I refused to let Sean ruin it for her so I took him to the car. Instead of straightening up, he threw one of the biggest fits of his life. He kicked and screamed and screamed and kicked. I'm certain I had war wounds from the experience. It was a miracle the windows didn't break. The car shook for what seemed like an eternity! Every so often I'd look up to check on Savannah, smile and give her a thumbs up and go back to duking it out with Little Dude. It was almost comical.

When Savannah was finished playing, I drove to Dairy Queen. I ordered through the drive thru, "I'll have two  vanilla cones please." I handed one to Savannah. Then I wrapped my tongue so far around the other one, took a big fat lick so fast it sent me into a brain freeze but I didn't care, I was making my statement. After having stopped his fit (because he knew DQ was on the agenda) Sean thought all was forgotten. He pitched another fit - so be it. Before, I had always given in to avoid tantrums - especially back to back. Not this time. 

Since the day in the park I realized that life was too short to put up with crap. My marriage was unraveling and it wasn't because of the autism. It was because I had accepted his dominance over me. 

I was beginning to see my denial. I was beginning to feel my pain. I was beginning to hear the truth. I was beginning to touch reality. I was beginning to smell bullshit.

35. Rock and a Hard Place

I had been feeling confident about how I was managing Sean's autism. Even though it was always two steps ahead of me, I felt certain I'd catch up to it eventually. At the rate of Sean's improvement since his diagnosis, I just knew he would be nearly normal by the time he was a young adult. I was encouraged and impressed with his early intervention. We had time to make this happen.

Family, friends and people in general asked the same questions on a regular basis:

"What will life be like when Sean is older? Will he be able to live on his own?" 

I had no answer. How could I know? But I thought about it a lot. I thought surely he would be nearly normal one day. Excuse me, I mean, nearly "typical". Oh the lingo. Whatever.


Typ-i-cal:
adj.

• Exhibiting the qualities, traits or characteristics that identify a kind, class, group or category.

Sean was far from exhibiting typical behavior according to typical people's terms. He was not completely potty trained. He was five years old and still in a diaper which was the least of our worries. He was showing progress. Let me assure you he could sink a Cheerio with his pee stream in seconds flat. Focal points were necessary!

One morning before the bus came to pick him up for training, I put a clean diaper on him and dressed him. He began to throw a fit, pull on his diaper and scream, "BIPER"(diaper). I checked the diaper and it was fine. He kept at me to change his diaper. I changed it, checked to make sure it was on properly and he screamed, "BIPER!!!!"again. He brought me another diaper. I changed it again. He was in a total meltdown. He was stuck. I was stuck. I stopped changing his diaper but he was freaking out. This behavior continued until I put him on the bus. He was a mess. I was devastated. I hadn't seen this behavior since his "Winnie Pooh" video tape incident. It was the first time I saw true desperation. I was used to the repetitive stimming behavior but I was not used to the obsessive-compulsive type  behavior. Was it OCD? OCD is a different beast altogether. I knew that no amount of behavior modification could change it. It would take medication. It would take Prozac.

The diaper incident was a one time experience. These bouts with various vicious circles were enough to do me in but I followed along (two steps behind) trying desperately to break them. They were maddening. They were typical.

34. Rediscovery

The summer Sean was about to turn five, he was chosen as one of a few autistic children in the Valley to teach the TEACCH program to teachers. saythatfivetimesrealfast! He was perfect for the job in that he was a classic case study in autism. The training was a week long and proved to be as helpful to me as the teachers. I learned just how literal my communication with Sean needed to be. The instructor gave an example:

The doctor asks the autistic boy to kick the ball. 
(He knew he could because he had seen him do it.)
The boy did not kick the ball.
He asked him to kick the ball with his foot.
The boy did not kick the ball.
He asked him to kick the ball with his shoe.
The boy kicked the ball.

I learned to throw nearly all generalizations out the window. Better those than my child, I'd say.

Sean was still a mega handful. He still had rock star tantrums, but he was, at least, communicating to the point of being understood more times than not. There was a method to his madness and I was "getting it". His behavior was more predictable. Thank the Lord for even just a little predictability! I was no longer afraid of the autism. I stared it down at any given moment. I was a force to be reckoned with. The "who are you and what have you done with my child?" intruder was now a member of our household and lived by my rules. I shouldn't get too cocky here, he still kicked my ass but at least I was stepping up. Sean and I shared silences as well as full blown hissy fits on a daily basis so even though we were still living in extremes, we were c-o-m-m-u-n-i-c-a-t-i-n-g. I was also communicating to the point of being understood. We were each relearning how to "talk" to one another, that's all. I had been mourning the loss of him so much that I didn't realize I could find him again.

~love lifted me.

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.