My Journey with Thomas. Not Knowing whether to Cry or Laugh

Prologue

I am finishing this book/blog during the COVID 19 Pandemic.  Now more than ever each one of us has to cope with a situation that unless you lived thru the 1918 Flu Pandemic have ever faced in our lifetime.   This pandemic is a combination of the 1918 Flu and the Great Depression.   Sheltering in place, loss of employment, scarcity of food and goods, and fear of the unknown. It is” the what is next syndrome”.  This fear that is not unlike what parents who have child with a disability face every day especially as they get older and the future is looming in front of them. “The what is next syndrome” can paralyze you or it can motivate you to look at the future with optimism. 

Like this pandemic families who have a child with a disability face isolation, loss of employment, divorce, loss of income, homelessness and fear of the future.  But this after the pandemic all these situations will go away and life will eventually go back to some kind of “normal”.  These situations however will be with the families who have a child/adult with a disability for a lifetime or as long as either of them lives.

I was watching a Christmas movie in June. LOL about a woman who developed a marketing pitch on keeping the spirit of Christmas alive 365 days over the year.  Keeping this spirit alive is critical right now as we go thru this pandemic. We need to be helping people, giving our time and money, and showing love for one another not hate.

Everyone matters. It shouldn’t matter what color your skin is, whether you have one leg, no legs or arms, what you look like, or if you act strange due to a disability, we are all in this world together.  Each of us should expect to be treated with the same dignity and respect or do unto others as you would have them do unto you.

I recommend seeing this movie, yes it most likely a “chick flick” but I believe every one could benefit from it.  People make mistakes, people refuse to forgive each other and, calling people names because you think you are better than someone else is wrong.

Life will be forever changed as we move forward. It has spurred my husband and I to contemplate moving in December to Texas to be closer to our daughter and grandchildren.  Yes Texas where services for Thomas are mostly non-existent.  We aren’t getting any younger and now is the time to plan for the time when we are no longer here. 

Again we are in this world together lets try and make it better place to live for future generations.

The Beginning

As I look at my gray hairs in the mirror I wonder how I made it to this point. I see two pictures on the wall. One girl and one boy whose entrance into this world were spectacular, but ordinary. Each one would face life’s challenges differently. One would have the world at her finger tips to explore. The other would be subject to a world where he would forever be a square peg trying to fit into a round hole.

How do I start? I guess as the song goes, we start at the very beginning.  Our son, George “Thomas” Selvidge, was born on Saturday, October 18, 1980 at Deaconess Hospital, at 10:55 am in Oklahoma City, Oklahoma. Everyone’s life is changed forever when a baby joins the family, but becomes particularly challenging when that newborn later is diagnosed with a disability. Thomas was deemed normal at birth, but around 17 months of age his brain did a 180 and seemed to just stop in motion.   It would take the next eight (8) years to receive a diagnosis of Autism and Intellectual Disability.

 The year Thomas was born,1980, was five years after the Viet Nam War had ended, Ordinary People was at the box office, Prince Daisy was a bestselling book, and Ronald Reagan was about to become president for the next eight (8) years.  The “ME” generation was in full swing in society. Ramifications of which are still in effect today. Humanitarian gestures were being replaced by “What’s in it for me”? “What about me”? “I want that”. It was a total reversal from the words that President John F. Kennedy spoke in his inaugural address in January 1960, “Ask not what your country can do for you, but what can you do for your country?” Meaning not what’s in it for me, but what’s in it for the good of all.

Remember Thomas was born in 1980—no internet, no support groups, no library information, no medical help, no respite care or a break, and, in our case, no family help on either side. The only resource was the yellow pages of the phone book! The withdrawal from family and friends was easier than the embarrassment of dealing with Thomas’s meltdowns and unacceptable behavior outbursts.   Some family members seemed to indicated I was to blame due to the fact that I was his mom.  After all I was the one pregnant and whatever dumb or unintelligent things I did or didn’t do while pregnant were surely the cause of Thomas’s problems. 

Today’s families struggle as never before if a family member needs full-time care. Gone are the days of having the extended family living in one neighborhood or generations under one roof.  Our society is very mobile, which often leaves generations separated due to jobs, health, or education.

People might not agree that “it take a village to raise a child”, but without support from family, friends, church, or the community coping with the challenges associated with long term care of a family member with a disability can cause mom and dad’s health to start to fail and the money pot to get smaller.  Each family member experiences the family member with a disability differently. Moms are the primary caregiver, Dads are the breadwinner, and siblings, like our older daughter, are referred to as “the forgotten family members.”

Without the help from the “village” isolation can set in and often leads to the break up of the family unit.  Autism is a very precarious, complex developmental disability that impacts development in the areas of social interaction, communication skills, and leisure and play activities. (www.autism-society.org) Because of the very nature of Autism, family “social” isolation becomes overwhelming.

Due to the lack of language skills and the fact their brains are unable to filter out sounds it makes family outings almost impossible.  Imagine yourself in a crowded room with lots of commotion—people talking, plates rattling, music playing –all  at decibel levels that make it hard for the “normal” person to concentrate.  But what if you were unable to express yourself in words, tune out sounds to concentrate on a conversation, or move around in a room jammed with people like a sardine  –guess what happens?  Ultimate meltdown.  Screeching at the top of the lungs, jumping up and down, biting on the hand, arms waving, and running to the nearest exit, mowing people down at break neck speed, all the while telling you the only words he can retrieve “Go get in the car”!!!  You are running, face red, apologizing, hoping you make it to the exit before your child does. Then, when safely out of the noisy situation you either cry or laugh all the way to the car or do both. By this time, you swear that will be the last time you try going out, but if you give in to your child, isolation, depression, guilt, sorrow and anger can either overtake you or you get up, brush yourself off, and with determination say to yourself there will be more outings. You will not give in to forced social isolation.  www.autism-society.org

Since Thomas lacked the verbal skills to tell us what was wrong, it left us, playing a guessing game. He made us wonder – Was he crying because he was hungry, thirsty, sick or bothered by something else in his environment that we had no control over? This frustration often resulted in a meltdown while we tried through the chaos and confusion to figure out what to do. The result was outings into the community for Thomas became few and far between.   Exactly what he wanted!

Thomas has the kind of Autism that no one wants to talk about.  He is on the lower end of the Autism Spectrum and, after years of work, he can do a lot.  He can now  go places without a melt down , tell us his wants and needs or  sometimes shows us, since he is  basically non verbal.  While still understanding most conversations he just cannot retrieve the words to carry on a conversation.  There are no scenarios where he will suddenly became “normal”.   I am not sure anymore what “normal” is but, what ever yours is, there is no sudden cure for Autism that I have found.   All the stories on the media are “feel good” stories and I applaud the family for their success, but that leaves a whole group of us who are just out there. No one sees our children because outings are next to impossible. Isolation is easier than the effort to cope with a meltdown as people stare at you making snide remarks and shaking their heads. 

To look at our kids no one would ever know there was anything wrong with them.  They have what I refer to as a hidden disability.  There are no outward signs to distinguish them from anyone else.

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