64. Third Parties

I was the type that didn't want anyone to "know my business", so I didn't talk much about our problems! My husband, however, decided to discuss it with anyone who would listen. I wasn't happy about this. My parents were called numerous times -not by me- and informed of all of their daughter's wrongdoings. Oh, the list went on and on. Luckily we lived far from my closest friends, besides Pat, otherwise he would have called them too. I was embarrassed for him.

By the time the counselor was called in to do damage control, I was emotionally turned off. I knew that I needed to at least give counseling a try, though. The counselor that my husband chose was a Baptist preacher. He knew him from his work in some way. The sessions were about an hour long and free so what the heck? I remember one session in particular. Near the end of it, my husband said, "I am concerned for her spirituality because she said she wanted to throw our son out the window and that she hated God."

I tried to put that loaded statement into context before he ended the session but all I heard was:

"Times up."

I was stunned. I was pissed. This counselor knew very little about the effect that autism had on all of us, not just ME. When we were going through it all I had discussed my brutally honest feelings with my husband and he seemed to understand. He lived the life too and had to walk away many times for fear of hurting Sean.

With little time to defend my long ago spoken words, I left the office realizing that it wouldn't have mattered. I knew in my heart that my love for my son kept him safe. I knew I had to give air to my thoughts so I talked about them. I couldn't let them sit inside my head long enough for them to convince me that they were justified. As for hating God, I did, but only temporarily.

63. A Silent Message

Friday nights at home were the nights when the beer flowed way too much and way too easily. It was the routine. It was a ritual. It was the way it was and the way it was was the way it WAS. We settled into the weekend as most families do but apparently we felt the need to numb our pain in the process. We watched movies and drank. We had fun. Why shouldn't we? Why wouldn't we? Why couldn't we? We talked and talked and talked until I was the only one listening. Those Friday nights  of listening carried over into the wee hours of Saturday morning. I was a random toy stuck in one of Sean's circles - I was our pet hamster on the wheel - I was Monday thru Sunday. 

One particular Friday night Sean tripped on the mini trampoline that had to be in the center of the living room. As he was walking into the small hallway we said, (from our beer drinking places), "Buddy, are you okay?"

We saw his shoulders shake a little as though he was crying in pain but he didn't make a sound. We both looked at one another, got up to follow him and sat down with him at the end of the hallway in front of his closed bedroom door. We began consoling him at the same time, "Ohhh Buddy! I know that hurt! Sean let me see. Just rub your leg and it'll be okay...sugar honey pie, lemme kiss it!"

For some reason we, (his buzzing parents) began to argue, each of us saying things like: "Don't touch him, he's going to be fine. He doesn't want you to make a big deal out of it. Just let him get up on his own... blah blah blah!" We were in a standing position by now.

As we were arguing Sean stood up. He quietly and very slowly took my hand. He opened his door, escorted me in and closed the door with his father on the other side. Sean was looking at the floor as we stood there, our bodies facing the door. We stood there long enough for me to process what just happened before I said, "I hear you, Buddy. I - hear - you!"


My buzz was gone.

62. The Lack of Empathy

My marriage was in trouble. I kept asking myself how it "got to this point", and I couldn't map it out. I was beginning to see that I was extra super good at being in denial, though. I was also beginning to feel that life was too short for living in a situation that wasn't right for both of us. For all of us. I had taken vows and wanted to honor them so much that I denied the reality. I lost sight of myself as I was living my husband's life as well as Savannah and Sean's. The autism had a way of helping me map things out. As I was forced to analyze Sean's every move, I began to do the same with my own. I was about to be forty - was it a midlife crisis? I was writing more and more about the state my marriage was in. Thoughts of unfinished business kept creeping in so much that I couldn't suppress them like I had many years ago. The death of my dog Allie, was at the forefront. She was killed early on in the marriage. I  swallowed the pain the day it happened. I buried it deep inside, and talked about it as though it was "just a thing that happened."

Allie began to "speak" to me. Her spirit rose up in me and strengthened me. It would take years before I could make sense of her death. It would take years to see that autism played a hand. 

61. "Big Fish and Fairy Tales"

I've known you all my life--

Rumpelstiltzkin too, so what? 
I've read the proverbs, tales, 
miracles; 

Death to life, masses of manna, 
son sacrifices, straw into gold, 
Why not? and calmed seas. 

And there is still all this wine, 
and I want water. 

Villagers, messengers, 
and prophets seek your name, 
want to watch you dance 
'round the flames, 

sing the agenda of tomorrow; 

know which child you'll take. 

I sit on the shore and listen 
to the conch simulate the ocean, 
swear it is the echo of Jonah 
screaming to be free. 

If my son returns 
I will name him "Jonah". 
Ask what he learned 
from the "big fish". 
I will read him Rumpelstiltzkin, 
and I will no longer 
be torn in two.

©2000 Peggy Putnam Owen

60. Dino Art

Sean's Steg

age 5

Sean's Triceratops

age 5

59. In Acappella

My life in Harlingen was wearing on me. I was pretending to be happy, but it was getting harder and harder to do. I worried so much about the future of my children. Their exposure to such negative energy in the house was harder to explain. The air was thick, and I was suffocating. I was struggling so much that I began imagining myself with my children on our own, away from my marital responsibilities. Our home was toxic.

To try and make things better for Savannah, I would watch "The Land Before Time" movies with her in her room. She loved all of them. The music especially.

One night she called me to her room and closed the door. She looked at me square in the face and said, "DON'T CHEER!" at which point I swore on my first born that I wouldn't!

She sat me down on her bed, positioned herself at her Little Tikes picnic table and began singing, "Always There" from "The Land Before Time V". (The video link is the best I could find)

I listened to my seven year old daughter sing the complete song to me. With every bit of restraint I had, I managed to make it through with little to no reaction as she had insisted. I hugged her ever so tightly, walked out of her room and bawled my eyes out.

58. The Watcher

Occasionally we let Sean play just outside the door on the side of our house. There was a sidewalk there too that went alongside the house. We could watch him from the double windows as he traipsed up and down the walkway. He liked to play with dirt there, and since there was an empty lot next to us, there was plenty of good old dusty Texas dirt.

One afternoon Sean was playing outside when I felt a sense of urgency. I didn't hear a noise or anything, it was just a feeling - not good, not bad. It was just a, "you'd better go see" sense.

I swung the door open and Sean stood up. He looked at me with a non-reactionary expression, but then I noticed his feet fidgeting. I also noticed his left fist was clenched shut, so I hurriedly pried it open. About ten or more fire ants scurried out. I began slapping them off of him and stomping the ground. He didn't make a sound. I pulled him inside to check his hands and body. Not a single bite!

Sean had apparently noticed the fine dirt of a small developing ant bed and began sifting it. I doubt he even noticed the ants. If he had been bitten, I doubt he would have reacted. I had to constantly be his reaction; therefore, I had to constantly observe. I learned the most when he wasn't looking.

"You can observe a lot just by watching."
~ Yogi Berra

57. Mr. Sandman

Sean played with sand a lot. He always swept it into his hand, then close his fist and release a little at a time while watching it fall. One day Savannah called us out to the driveway to show us Sean's Sandman. We were shocked and very impressed they he stopped stimming long enough to make an image. Sean was ultra proud of it too. 

56. The Gift

There is no major reason to mention that Savannah was one of two white girls in the predominately Hispanic classroom except to explain that she just didn't fit in that well. She didn't really pay attention to skin color anyway, but I was hoping no one else did either. As a matter of fact, I remember when she was in second grade she described her classmate as, "that girl with the dark skin". I remember thinking, that could be anyone in her class.

Being the over protective mom that I am, I was concerned that Savannah was being bullied even though she never indicated so. I knew that bullying could be a problem in any school, and I was afraid for my children.

One day Savannah came home with a book she got from the Scholastic Book Fair. I had given her money to get Sean one because she wanted to surprise him with a book, but she didn't come home with it. I asked her why and she said, "Elyse took it".

Hold me back!

The next morning I went to Savannah's classroom and explained that I wanted to speak with Elyse about taking Savannah's book. The teacher allowed me to do so. I walked over to darling Elyse who was sitting in her desk. I knelt down, so we were eye level with each other. I said,

"Hi Elyse. I'm Savannah's mom. Savannah bought a book for her brother yesterday at the book fair. She said she let you look at it, and that you didn't give it back. Do you have the book?"

"No."

"Do you know where it is?"

"No" (with a little bit of attitude)

The whole class was watching so I had to be cool. I calmly said:

"I see. Savannah, Elyse said she doesn't have the book, and she doesn't know where it is."

Savannah nodded while daggers were shooting out of my eyes. I said:

"I guess you'll have to get your little brother another book because the one you bought as a gift for him was taken by 'somebody'. Even though I believe you, we can't prove that Elyse took it because there are no witnesses. Okay, Honey?"

Savannah nodded.

I stood up to walk away when I saw Elyse lift her desktop. She pulled out the book that Savannah had bought for Sean. She handed it to me and I said, "Thank you, Elyse". I told Savannah goodbye and walked out.

I never mentioned it again.

55. "Sweet Dreams, Sarah"

Savannah drew so much that we could have wallpapered every room in the house with her drawings. I decided to make small books to keep them organized. She couldn't have been happier!

The End!

54. Neighborly Love

We had an alley-like street in the back of our house. Mary and Abbie, a couple in their sixties, often sat on their tiny back porch in the late afternoon. They watched Sean play with the hose on our driveway. We would turn on the hose just a little, so he could watch the water spread down the concrete. It eventually made a puddle at the end of it. Somehow, we figured it was a safe place for Sean to play alone for minutes at a time because the road was seldom traveled. Mr. Abbie brought it to our attention that when cars did come down that alley, they were fast. Thinking back, Sean should have never been unsupervised. Thankfully nothing happened but the what ifs are disturbing to me now. I allowed him to play outside because there was peace and quiet inside. I took my chances. We checked on him very regularly, but Mr. Abbie picked up our slack.

Mary was a support as well. I think she could tell we all were struggling. I'm sure our fights made the bricks shift as well as invite the neighbors to listen in whether they wanted to or not. We could rock it out.

One weekend my husband went out of town on business leaving me with the children for about a week. It was in the summer, so we were together a-l-l d-a-y l-o-n-g. I'm not sure what was up with Sean but he was unusually difficult. It began on Saturday afternoon when I was watching TV. Sean was in my lap in the recliner. I was tickling him and goofing off. We played for awhile until I'd had enough. I tried to  transition him smoothly and redirect him. He kept jumping on me over and over again. I'd hold my arms out to prevent him getting on me, but he kept on. I got up to walk, but he was hanging onto my legs. I'd sit down to hold him some more, but he was jarring his knees into my stomach and laughing. He picked at my hair and face too. This went on for awhile. Finally, I just lost it and everything escalated from there. I couldn't get things settled down completely. Sean was up and down all afternoon.

By this time it was late in the afternoon. Finally, I went to my car that was parked in the driveway, and tossed Sean in it. I stood outside of it, and stared at Mary and Abbie's back door. I prayed with all my heart that Mary would come out. I stared at that door with every bit of belief that it would open. I kept repeating, "Come out, come out, come out." I don't know why I didn't just knock on it. I had not yet learned how to ask for help. The door opened, and Mary came out. I was crying but quiet. I was beaten down and resigned. I took a step toward her to ask if I could talk to her. She came over and listened. She was reassuring and confident in God's will. I was thankful that my prayer was answered but I was not so confident.

The next morning Sean was at it again. I put in an emergency call to Dr. Seals in San Antonio who ultimately increased his Prozac. Even though the medication hadn't had time to take effect, I was relieved that help was on the way. I had a focal point again. We also had an appointment. We went to a nearby city in The Valley to see Dr. Seals at a hospital there. When we got there, they said he had called in sick. I burst into tears and kept saying, "nonononono". I collected myself and walked out with nothing.

Through this I realized that when help was slow to come I had to be prepared to hold on by telling myself that it was coming. I had to learn to ask for help in a timely manner. I had to work on my confidence.

53. The Balancing Act

My husband and I always made the effort to maintain balance in our lives. We were pretty good at it in the beginning of our marriage, but living with autism made it twenty times harder. In the beginning, it snowed us under. We didn't know how to pay attention to the finer details, and tweak our lives from the inside out which is what autism requires you to do in order to survive it.

I eventually learned how once I struck out on my own - with my children in tow.

The stress level continued to build in our home in Harlingen. Money problems brought on by our newly acquired debt was a huge issue. We were inexperienced homeowners and lived outside our means. We found ourselves in more debt than we could manage comfortably, so I called Consumer Credit Counseling Service to help us. It was a free service who helped us organize our money, negotiate the credit card debt, and send us on our way to becoming debt free. My husband and I were not entirely on the same page, but find me a house where that exists, and I'll show you Disney World. 

I didn't work outside of the home except for a brief time in the office where my husband worked. I began the job on a Monday right after a vicious stomach virus hit the whole family. Sean was the first to get it on Thursday. I remember worrying myself sick about skipped doses of medicine, but there was nothing I could do. Savannah got the virus on Friday, my husband got it on Saturday. I was left to get it on Sunday, and into the wee hours of Monday which was the first day of my part-time job. I managed to make it through and was glad my husband was there to encourage me.

As time wore on, I noticed that Savannah was prone to get "stomach bugs". It got to be such a problem that we had her tested for parasites since we lived in a border town. Her tests were negative.

We didn't think about the effects our fights had on our children. I suppose that subconsciously I thought they were protected by the autism even though Savannah was not officially diagnosed with it. They appeared to always be in their own little world. Sean seldom, if ever, reacted to our fights (although his memories would surface years later). After awhile Savannah began to act as our mediator. She would come in and quietly say (with her arms stretched out like a referee), "Okay, okay, take it easy." She was in the middle of everything - the fights between her parents and those between her brother and mother. She tried to maintain the balance in our lives where we had failed. My little girl was trying to make everything alright, and it literally made her sick to her stomach. 

52. Hard Truth

I'm not quite sure how we acquired Anna, but Savannah was thrilled to have a hamster. I think she was a Christmas gift. My husband brought home the most beautiful strawberry-blonde hamster, a house complete with a squeaky wheel (who gets the grease, ya know!), and the right kind of cedar shavings to avoid stinkage. Savannah adored her; therefore, I adored her. She was kind of cute in a rodentary-ish sort of way. 

Hamsters don't live very long so I knew there would come a time in Savannah's young life (age 6) when the invincible death talk would happen. Oh boy.

Anna's cage was sitting on the floor against the living room wall when I noticed Anna lying very still in an awkward Kung Fu-like position. She was flat on her back and looked like she was ready to kick some ass. I guess it was because she was as hard as a rock. She obviously had been dead long enough for rigor mortis to set in. I am not sure how long she'd been dead. It couldn't have been very long because we really did pay attention to her. Who knows, I could have run the vacuum cleaner, - as if - and made her have a heart attack. Nevertheless she was d-e-a-d.

*insert choir music*

I was the first to notice that Anna was dead so I whispered to my husband to let him know, "we have a situation." We decided how we were going to "break the news" to Savannah. It went something like this:

"Savannah, Savannah, Honey, listen, we need to talk to you for just a minute or two. Darling, do you remember when we told you that pets don't live very long sometimes?"

Savannah nods

"Well, Honey, Anna stopped breathing and has gone to Pet Heaven. She lived a very good life because you took very good care of her. She was a happy hamster but even happy hamsters don't live very long because that is the way God made them. She wasn't sick, she was old and ready to go to Pet Heaven. She was very loved."

Savannah processes

"Honey? Are you okay? Do you have any questions?"

Savannah cries

"Savannah, Daddy is going to find a little box to put her in and bury her because that is what we do with the body. Her spirit, her soul went to Pet Heaven. You can't see the spirit or soul, but when something stops breathing it leaves the body and goes to Heaven."

Savannah nods.

So my husband finds a checkbook box, lines it with tissue, places Anna in it and reverently closes the box. He picked a spot to bury her where Savannah and I could watch from the window. Savannah cried as he lowered Anna into the ground. He covered her and looked at Savannah with sympathy.

I told Savannah that she could get another hamster, "Of course you can, Baby, absolutely! We would love to have another (rodent) hamster - we can pick one out in a few days or weeks" I prayed that she would forget about the whole replacement idea until two days after Anna's burial when she randomly asked,

"Mom? When is Daddy going to let Anna out of the box?"

I was mortified! I quickly said, "Anna is DEAD. She will stay buried forever!"

And with that, Savannah looked at me like that was the most straightforward news she'd heard in years! She was still pretty upset about Anna so I ordered some children's books about loss. I found Badger's Parting Gifts and Sad Isn't Bad which turned out to be very helpful. (She still has these books.)

We drove to Pet Land to get hampster #2 and found a pretty little lovely, precious sharp-toothed,  blonde baby hampster. On the way home I asked, "What are you going to name her?" and she excitedly said, "KATIE"!

I was relieved to see her happy again. Then she said:

"And when Katie dies, we'll get Susie!!"

Alrighty then. And so it goes. Katie went on to marry Johnny. They could never live together but on occasion they visited one another, "fought" and had a million babies. Every last one of them looked like Johnny. Katie escaped her cage (in the garage during Spring) and Johnny lived to be a very old gray haired hamster. He just about gave Mister Jingles a run for his money.


I realized, from this experience, that Savannah needed hard truth in order to "move on". Most children do, really. I had to learn how to protect her the way she needed me too. Not the way "I" thought she needed me too.

51. A Daily Reminder

"When you are sorrowful, look again in your heart, and you shall see that in truth, you are weeping for that which has been your delight."

~Kahlil Gibran

50. How-To Christmas

Christmas mornings were interesting. They were as exciting as they could be for a child with autism. And who am I to say, really? I felt like a cheerleader trying to excite Sean. My heart would sink a little when I watched Sean walk past his wrapped presents each year. I usually had to place a gift in his hand and show him what to do with it but at least he responded to the unwrapped gifts without prompting. I had to look at the bright side. At least he could see and hold them. There was much to be grateful for despite his inability to connect to things I felt he might connect with. After all, I filled out his wish list.

Sean's third Christmas

Luckily this train set was turned on, 

otherwise, Sean would have walked right past it. 

This was a very happy moment for all of us.

Sean was four.

I'm pretty sure I put this present in Sean's hands. 

He eventually learned what to do. 

He is about five years old here.

Better delayed than never.

I celebrated Sean's accomplishments but was glad that Savannah was all over Christmas! Luckily, my focus was quickly shifted to her joy. Her joy became mine. She could always redirect me.

49. Seasons Change Us

The holidays were always a time when the edginess in the house softened. My husband and I were kinder to one another. We pulled together for the sake of parties and playing Santa. I don't particularly remember honoring Christ the way I had in the past during these years. I was unable, just yet, to see the gifts that Sean's autism gave to anyone who was willing to receive them, much less me. 

The cooler climate played a part in our newly rediscovered cohesiveness. The heat in The Valley began to cool in November. It just felt better outside. The air was crisp and refreshing. It was a time to celebrate family. Because our extended families lived so far away, Pat and Jack opened their home to us for Thanksgiving and Christmas dinner. Nan (#2), flew in from Chatom. Her parents - The Smiths -Chuck and Nan (#1) came from Buffalo, NY each year to settle in as Winter Texans so, it was like a family reunion at Pat and Jack's house. Their extended families often came as well. We were thankful to be included.

Pat and I made trips to Mexico to buy gifts and party goods for the Christmas season. It became tradition for us to eat and drink at a restaurant in Progreso called Arturo's at the end of each shopping spree. Arturo's was a place Pat and I often met because it was halfway from where each of us lived. We met there pretty often to catch up. My visits with Pat at Arturo's are some of my most cherished memories. We were often  crowded in among Winter Texans and random tourists but life for me at those moments were peaceful. We sang along with the organ music and participated in The Chicken Dance. We continued to sing hymns from memory as often as we were called to do so. Each time we talked and partied, I forgot about life for awhile. I lived, breathed and ate autism every waking hour except for my times with Pat. Her friendship was my gift. 

~praise God, from who all blessings flow~

48. "Lazy Savannah"

Cinderella Story or Sleeping Beauty?

The End?

47. Just a Little Cream

Dr. John Seals from San Antonio was Sean's neurologist who traveled to The (Rio Grande) Valley to treat children once a month. We liked him and felt that Sean's treatment was moving in the right direction, medication-wise. Sean was still on Prozac and Tegretol and although they were not magical drugs, they helped. 

I am pretty sure it was Dr. Seals who ordered Sean's first EEG to see if Sean's electrical activity in the brain was normal. It would detect seizures too. 

Days before the procedure I asked the nurse how they were going to keep Sean still during the test. She said, "Just keep him awake longer the night before so he will fall asleep. Just bring him in his pajamas".

Uh, what did she just say?

I could tell this very kind nurse knew nothing about autism so in a matter of seconds, I gave her a quick overview with a tone to my voice that implied, "YOU ARE OUT OF YOUR FREAKIN' IGNORANT  MIND, LADY!!" 

I'd like to know just how many children have ever fallen asleep while on a cold stainless steel table in a sterile, harshly lit environment with electrodes stuck all over the head. 

The expectations of some people just overwhelm me.

It was no surprise that Sean was wide awake and didn't cooperate from the beginning. He flailed and flopped around on that table like a freshly caught fish and wasn't about to stop any time soon. He was fightin' mad! Finally, after all of the "No no, Honey, be still now." comments and glances that said, "You didn't follow directions and keep him up did you?", they made the decision to strap him down. I don't know why I allowed this. I knew we were wasting our time because the EEG requires complete stillness for accurate results.

They began to wrap Sean and the table like a mummy. At this point he was starting to give up but was still vigorously moving his head back and forth. Then I watched him take a deep deep breath and let out the longest sigh I'd ever heard. With tears in his eyes and his bottom lip trembling, he gave up. It reminded me of the day in the nursery when I watched him take a deep breath and resign himself as if to say, "Nobody gets it."

The test was performed at last. The results were negative and as far as I was concerned, inconclusive.

There came a time when Dr. Seals no longer treated The Valley children so we had to find another neurologist. We scheduled an appointment for Dr. Rafael Mimbela. He asked me a lot of  questions with accusatory undertones. I don't remember the exact questions but the overall feeling was that I had not bonded with my child and this is why he was autistic. 

Years later, when I learned about the "Refrigerator Mothers", a term coined by Bruno Bettelheim in the 50's to describe mothers of autistic children, I thought about my first visit with Dr. Mimbela.

Dr. Mimbela ordered a second (sleeping, thank you!) EEG and an MRI. Sean was given a mild sedative to conk him out long enough to do the tests. They informed me that he could wake with a headache and to give him Tylenol. When Sean was released he was so completely drunk I had to carry him to the car. When we got home I couldn't get him to sit. He insisted on having fun with his drunken state. He bounced around the house like a pinball.

It wasn't long before Sean stumbled toward me with a tube of toothpaste. He held it to his head and said, "cream?". Anytime Sean had mosquito bites, his dad put toothpaste on them to soothe them. Holding the tube to his head was Sean's way of letting me know his head hurt. To say the least I was thrilled about the communication.

I was thankful that Sean's tests were normal. I was even more thankful for the effort he made to tell me his head hurt. That must have been one badass headache.

46. "Sean Circles"

I only have a few "Sean Circles" documented in photos but Sean has created more than I could count. We found them everywhere and accepted them as part of the decor. Every now and then I'd turn a toy around or put them in different places and upon entering the room, he'd survey the circle and correct all that was "wrong". I gave up trying to understand his connection with Bad Boy Sid. Maybe his connection is with the "mutant misfit" toys. Whatever it is, it is a very strong connection. Some things don't need to be explained.

Circles make his world go 'round.

45. Circles Set in Motion

It was year 2000 when we began seeing "Sean Circles". It was an event as mysterious as Savannah's "Temptations" brainteaser. He began building them by bringing in random toys and placing them in a circle formation. After it was complete, he'd stand inside it, dead center, without staying a word. Every now and then, he'd move the toys in closer to his feet.

One afternoon I noticed that Sean was as busy as a  bee. He would go to his room, come out with a toy and place it on the carpet in a strategic place.  He was happy and focused, and so were we.

This was all done in the living room. It was a large spacious circle of toys, like those from Happy Meals and Christmas stockings, spread across the carpet.

It wasn't until months later, we realized he was acting as Sid in Toy Story. Toy Story premiered the year Sean was born in 1995. I am not sure when he saw it for the first time but whenever it was, it clearly made an everlasting impression on him.

From this moment on Sean constructed circles from damn near anything.