Oklahoma, where we live  is a poor state, and is as red as the hard red clay soil. It has two major metropolitan areas, Oklahoma City and Tulsa. It takes eight to ten  hours to drive from the panhandle to the far southeast corner of the state, with many rural miles in between.   When people first came to Oklahoma Territory many years ago they didn’t have neighbors. The state was formed through a series of land runs and land lotteries. They were truly rugged people. The conditions were harsh.  Many came to the new territory of Oklahoma to find a new life, a new beginning on free land. The pioneer spirit that brought people here so many years ago still lives today.   This hardness carries through every aspect of the state’s culture. The fierce independent streak is embedded into all areas of life and will likely always be there.  This independence makes it hard for families who need help from sources other than their neighbors, friends and family to seek the information or help that they need.  Mention the word government programs and people go on tirades saying, “OH, if they had just saved more money”, or “Those lazy ignorant bums”,   “What’s the matter with you?” or, ”Just pull yourself up and move on.” Maybe they will say,  “Where is your pride?”, “You don’t need any handouts from the government,”  or “This is your punishment from God.”

I have lived in Oklahoma all my life and until our son was born I never realized that Oklahoma had one of hardest government systems to navigate anywhere in the country.  The attitude of “the system knows best” assumes you are an uneducated, ignorant, poor soul who needs the government’s help. This attitude  is about as outdated as a Victorian costume.  The tide fortunately is changing, but very slowly, and it might be another 20 years before there is even a hint of “Blue” on the horizon.

This is not to say there are not a lot of good people living in the state because there are.  Oklahoma is the heart of the Bible belt and the religious connection plays a big part in the attitudes of the people. The missionaries who came to Oklahoma territory saw this area as an untapped gold mine.  They brought everything from hell fire and brimstone, to the rituals of the Roman Catholic, to the speaking in tongues of the Pentecostals, and everything in between. 

The impact of living in a red state with a child with a disability can be like running into a brick wall,  not only for the family, but also for the child.   The state is constantly struggling to make ends meet and there is never enough revenue to pay for services to meet everyone’s needs.  The families who move here due to the military are particularly hard hit. Since Medicaid services vary from state to state, with wide gaps what they had in place in one state will not always be available in another one. 

The 1980’s were particularly hard on Oklahomans due to the crash in the Energy Industry. It was our wakeup call to start diversifying industry in the state. But to do that the quality of the education has to be superior.  Oklahoma has some 546 school districts that are spread out in every small dot in the road. The dollars are not there to get teachers, books, or even enough students in some cases to fill the school. Now it is 2023 and the state is still depending on the energy industry to carry it along, many schools have not been consolidated, and the Oklahoma Legislature keeps cutting taxes thinking this is going to generate more dollars to pay for services that are now becoming nonexistent due to the lack of revenue to pay for them. The legislature doesn’t seem to get it.  They continue to rely on one industry, put no money into fixing the schools, and have some pie- in- the- sky idea that industry is going to run to the state.

Oklahoma puts very little of its money into education and until the quality of education is improved the state will continue to stagnate.  It is not to say there are not intelligent up and coming young adults out there. The University of Oklahoma had the highest per capita of National Merit scholars in the country for a public university at one time, the only problem is there are no industries or businesses to keep them here after they graduate.  The largest employers are state government, universities, Tinker Air Force Base and Fort Sill Army base in Midwest City and Lawton respectfully.

The quality of education is also very sporadic and unequal depending on where you live. This might be true everywhere, but especially in Oklahoma where each school district has its own superintendent. Schools in the panhandle for example don’t even come close to the same quality of education one would receive in the large metro areas of Oklahoma City or Tulsa. This is the same if someone in the family needs outside services to keep going.  This is especially true if you need special help at school. Most children in special education didn’t have the same fine teachers and program that our son,Thomas had.  They were very rare even in the large populated towns.

The kindness of the people in Oklahoma has been shown in times of crisis such as the Alfred P. Murrah Buidling Bombing in 1995. Oklahoma set an example to the rest of the country for the proper way to react when bad things happen. There was no looting or burning of buildings or people rioting. Just a community coming together to support people who had lost so much in a senseless tragic act.

In the end there is still that fierce independent streak, it is not all bad, but can be a detriment at times. The people who have lived here all their lives most likely had relatives who lived here before them.  And the beat of life goes on and on and on…

Continue reading “Living in a “Red” State” →

The concept of Special Olympics is wonderful. It warms your heart to see children in an arena where they can excel. The Olympians come away with a new sense of pride in them. It allows the world to see them, as a person first in a situation where no one is a loser and everyone comes away a winner.

When Thomas was 11 years old his  teacher took myself and ten other children with disabilities from his class at school to the Oklahoma State Special Olympics games.  They  stayed on the Oklahoma State University Campus for three days and two nights.   

This sounds like a wonderful adventure, except for the autism and intellectual disabilites. Since the autism made it difficult for Thomas to process or tune out sounds just saying the “A” word, and the thought of someone going into a crowded, noisy, congested place either makes you grimace or laugh.

 Thomas’s older sister  went with  me to the opening ceremonies that were held in the OSU football stadium. We sat in the stands watching our worst nightmare start to unfold. As all the athletes crowded onto the field, the loud voices and the music became deafening and the tension for Thomas was becoming critical. The only means of communication open to Thomas was to cry and scream in hopes he could escape back to the silence of the bus.  He did settle down only to wake the next morning to rain and cold. When Thomas realized it was raining and his head might get wet, I saw trouble brewing. He started rocking back and forth, slapping himself, and hyperventilating. In his mind the tactile stimulation of the rain falling on his head resembled the sensation of having ice water poured down you back.  I quickly gave him my hooded sweatshirt, which on a 3’5”, forty-pound boy looked likes a nightgown. This appeased him for the time being until we arrived at the event field.

The rain had caused a long delay in getting started and Thomas was becoming more uncooperative as each minute passed. He was registered I the softball throw.  By the time it was his turn Thomas was so angry he threw the ball a “mile” and won a bronze medal. On the awards platform, the lights went on. For the first time in his life, Thomas realized that he had done well.  He smiled briefly looking at me as if to say “See Mom!! Look what I got.”

That night the group returned to the football stadium for a rock and roll dance, which I declined to attend. They told me Thomas laid down on the turf with the group making a circle around him as he tried to block out the whole scene.  This was quite an improvement over the night before. They made it through the rest of the trip in one piece.  Thomas has returned for many years since to Special Olympics.  He has not won medals every year, but achieved something much greater—coping with the noise. This has been a major milestone. Thomas looked forward to going his last year when he was senior, where he won a gold medal and even danced with someone.

A professional baseball player Thomas won’t be, but he has gained something more; a sense of accomplishment.  He has realized he can do things and be proud. So with a little faith and hope people, even with a disability, can succeed and stand tall.

This was truly the case last week for my son, Thomas. He went skiing with the Make Promises Happen Camp in Guthrie,Oklaboma. He has attended events there for years, but this last trip was by far the most successful.  It has been a long road over the years living with a person with Autism. When the camp approached me about sending Thomas sking I thought “Oh! My! I’m glad it’s you and not me.”

We took a leap of faith and sent him off on an eighteen-hour bus ride that turned into a twenty-two- hour ride due to weather complications. I did not hear anything until Saturday night when his counselor called me. My heart jumped, but she wanted to let me know what a marvelous time Thomas was having. No problems on the bus, he had smiled every minute since he had been there. He was truly, for the first time in his life, having a good time. He laughed and interacted with strangers. Everyone at the lodge outside the group knew Thomas. Grown men played and wrestled with him in the pool/hot tub area. A group of Florida college students met him on the slopes and insisted on having their picture taken with him and even skied with him. He reached out, laughed,and interacted with everyone there. He spent more time on the slopes than any of the other kids who went.  He would tell Melonie , his counselor, “Go-Go ready- Go.” She said he could hardly wait to go back up on the ski lift to go back down the mountain.

They went to Winter Park, the premier place for people with disabilities to ski. People with one limb, no limbs, even the blind ski there. It gave Thomas a freedom he had never felt before.

When I arrived Monday morning to pick Thomas up they had to coax him off the bus. Then the accolades began from all. When he finally emerged from the bus the smile on his face told it all. It was as if he was trying to tell me “Mom, wow, what an awesome trip.” I was smiling and crying all at the same time and saying, ”Thank you, Jesus” for the moment. I willbe letting go of Thomas next year when he turns eighteen and the trip reinforced the peace in my heart from God saying it’s going to be okay! All the people at the camp, Robert , Lonetta, Judy, and especially her daughter Melonie, should be given gold stars. They have been a special part of Thomas’ and my life for many years.

Thomas has gone back to Winterpark several times over the years. His first two trips he used what they called a sitsky. In other words he sat down on a seat with one sky to guide him down the slope. He has since actually skied with skies no less. They have someone tethered to him in the back, but they are only there for safety. The person on the skies has to maintain thier balance and stay upright as they go down the slope.

Since COVID 19 he has been unable to attend his regular camps. He really misses it and doesn’ t understand why he can’t go. But perhaps next year it will be safe him to go back to one of his favorite places on earth.

“The Green Box” Adventure.

( In Thomas’s words really mine. Calling it the green box due to Trademark not sure I am educating you on what is in the box.)

“My mom tells the story of the day she realized I was a little odd. She found out that day that I really liked “The Green” Dishwasher detergent boxs.  I was only three and the shopping carts were flat and came right up to the big, black, wide flat platform where you put your groceries to pay for them. Well I saw the “The Green” box leave the shopping cart and I jumped into action. Before anyone knew what was happening, I had jumped out of the cart, past the cashier and was running down that big flat black belt to retrieve my box. I only like the green ones. My mom laughed and laughed, but the cashier was really angry. I didn’t look like I had anything wrong with me so she just thought mom was a bad parent. Little did she know how the box was going to play out in my life later.

“The Green” box however was used over the years to open many doors in my mind.  I had taken an interest in something. I would do anything for one of those boxes (only the green ones) so I learned to cooperate, go to the bathroom and learn fun things at school that would help me later all for the love of my Green box.

 School could use the box to get me to do things I didn’t like to do.    The teacher could tell me I had to work at various tasks and then I could hold the box for so many minutes.  At home Mom used it to teach me sign language and later I was able to transfer the signs into words which helped me learn to communicate at least my needs and wants to people.  I am now 39 and no longer need or want the box. 

Of course, when I was little, I was not as pliable or affable as I am now. If I had a meltdown in a store due to the noise level, the smells, or the people Mom would have to wrap herself around me, wrestle me to the floor and hold on for dear life.  I would eventually calm down and then we could exit the store.  If mom let me “win” and leave the store on my terms there would have been no more trips to the store.  I couldn’t help it when I was little it was like a train running through my head and Icouldn’t sort the sounds out like I can today.  Today someone would have called DHS on mom, but back 30 years ago no one seemed to care. I am not sure things have changed for the better. As I got older and bigger I would go to the store and I would just refuse to get out of the car, even if Mom promised to purchase “A Green” Box. I would just sit there in the back seat and laugh and smile and close the car door.  There were days when the chaos of going places was just beyond my comfort zone.  However, bribery did work great most of the

Coping

Learning to laugh enables one can to find something good in something bad.  I learned that acceptance is a very powerful tool and can either beat you or enhance your life. Some people have criticized me by telling me I was making fun of Thomas when I laugh.  Many of them had no children of their own much less one with a disability.  I found laughter in my life by embracing the situation I was in and making the best of what I really had no control over. 

Emily Pearle Kingsley’s prose, “Welcome to Holland…” points out, “When you find out you’re having a baby especially the second one you think you will be prepared for the journey. No one counts on a change in the plan.  You had envisioned yourself spending your life in Italy like everyone else, until you are suddenly thrust into a strange place. You have landed in Holland, a nice place, but an unplanned landing. You now have to decide early on if you are going to enjoy all the nice things Holland has to offer or spend the rest of your life envying the people who went to Italy.”  Parents have to go get new guidebooks, learn a new language, and realize they just lost control over whatever plan they had for their lives. 

It makes them realize they really had no control in the first place. Whether one believes in God or a higher power maybe each of our lives are like a whole novel, not just the end.  We will be judged based on the completed work. Some of life will be written by us, and some of life will be written by chance or fate. Acceptance of this fate can bring families peace or the feeling of being a lost soul who is always looking for the rainbow and never quite finding it.

Often situations thrust us in the face of tragedy. No, life is not fair, and no one promised us a life that was. Each person, no matter who they are, or how much money they have, will at some point in their life stand in the face of a tragedy. How prepared they will be is difficult to say, but it is hard for me not to have some sort of faith to pull from in these moments. Not necessarily religion, but faith. There is a difference between faith and religion. Religion gets caught up in laws and dogmas and decrees that are manmade. Faith is often harder to explain. It comes from the heart through prayer. Faith is difficult for many people because it cannot be seen or touched. It is intangible and crosses all ethnic, social, and gender boundaries.

Grief on the other hand, is a natural reaction to pain in our lives or situations we didn’t plan on. Grief is a journey or process that  takes us from Denial, Anger, Guilt, Fear, Hopelessness,  Rejection and back around full circle to Acceptance. Many people as Rabbi Kushner stated at an evening meeting at the Synagogue here in Oklahoma City after the bombing in April 1995, “There will always be people who want to play the victim. “There are people whose journey will never make it around the full circle of grief from Denial to Acceptance.”

The grieving cycle for families who have a child/family member with a disability is an interesting journey. The grief never goes away. Yes, time heals, but the emotions of envy and fear of the future are never ending.  Families are on duty 24/7.   The “what if’s” are always there in the back of their mind, about their child who might not ever being able to drive, go to college, or get married. They will always need the support of the “village”.

As the feelings of envy ease over the years, the fear of long term care takes over and can put an overwhelming sense of guilt on the family. The one question each parent asks, no matter who they are: “What will happen to my child/family member when I die?”

They finally realize there will be no “empty nest”, no real retirement.  Their job will continue 24/7 as long as they are alive.   The large financial burden and the impact of the mental and physical health on the other members of the family often take a back seat when caring for the family member with the disability.

One of the keys I found in trying to move forward was forming a circle of support. It wasn’t easy since the family turned in the other direction. I will relay later some of the marvelous or what I call “Thank you Jesus” moments over the years. These adventures have resulted in lifelong friendships for our family especially, Thomas.  Finding your village will help you see there is light at the end of the tunnel.

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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