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.