Not As Easy As Falling Off A Log – Part 2.2 Just Like Eddie Munster

Joshua battled several health issues as an infant. One of the most terrifying was sleep apnea. His sleep apnea was made worse because he was born with tracheomalacia. A quick description of tracheomalacia is that the cartilage in his windpipe was floppy which allowed his windpipe to close spontaneously. You can find more information on sleep apnea and tracheomalacia by following the links below.

https://www.mayoclinic.org/diseases-conditions/sleep-apnea/symptoms-causes/syc-20377631

https://www.mayoclinic.org/diseases-conditions/tracheomalacia/symptoms-causes/syc-20587222

As a result of the two issues Joshua’s was in peril of dying during his sleep. That meant that every night we had to strap sensors to his tiny little body and connect them to an apnea monitor. As I mentioned in another post, Dawn and I began taking turns sleeping so one of us would be awake to rouse him if the alarm sounded.

After the first few nights and several alarms we decided that his crib was too far away in the room across the hall. We wanted to respond as quickly as possible went the alarm sounded so we decided to move him into our bedroom. But we had a space problem. There was no room for his crib on our bedroom.

We were brainstorming on how to move him to our room. I do not remember who came up with the idea but one of us remembered an episode of The Munsters that contained a solution. In the episode the Munsters are on a trip and have to spend a night in a hotel. Eddie found his bed uncomfortable and decides he wants to sleep in a drawer of the chest of drawers in the hotel room. Eureka!

We emptied a drawer and then made a makeshift mattress out of a quilt by stuffing it into a pillow case. A couple of small baby blankets for him to sleep under completed his temporary bed. The terror of the alarms were not diminished but the arrangement gave us a much peace of mind as was humanly possible.

Posted on by johnnyboy61 Featured 0

Not As Easy As Falling Off A Log – Part 2 Getting Through the Nights

I didn’t know what to expect when Joshua was born.  I did some “homework” which was mostly reading books. One stands out in my memories – What to Expect When You’re Expecting by by Heidi Murkoff.

The information was helpful in some areas.  But once Joshua was born, we quickly realized that it was limited in scope and was not as helpful as we hoped. If there were books on special needs babies at the time we did not find them. We were in unknown territory with our first child, and we were soon disoriented. 

Fortunately, we were surrounded by a loving church family at Woodland Baptist Church in Peoria, Illinois.  We landed in their midst as homeless expectant parents to be. We were living in a hotel at first because our house was still under construction. A retired couple in the church offered us their fully furnished and vacant basement and we lived with them for several months until our house was finished.  God bless you Logan and Doris and so many others.

Joshua was my first experience as a father.  He is a joy and has been since the moment he came into this world.  Being his father has challenged me in almost every area of parenting and being a human. It was only through on the job training that I learned enough to navigate parenting a special needs child.

I had support systems that helped me through but there was no one I could talk to that was sharing, or had shared, the same experiences.  It was learn as you go, do the best you can and push through it. And it was act strong even when you did not feel strong.

The period of life-or-death battles Josh went through in the first two years was crushing us.  I would not allow myself to falter for fear of a domino effect on Dawn.  She was barely getting through day to day and at times it seemed like she had reached her tipping point.

One night at the hospital we were sitting with Joshua who was in a crib covered with an oxygen tent.  The doctors could not figure out what was going on and the outlook was bleak. There was no certainty he would survive the night.  Dawn crawled into that small crib, wrapped her body around his and stayed with him through the night. If our baby was going to heaven that night, she was going to make sure he was not alone when the moment came.  She wept, prayed and sang and then wept, prayed and sang some more.  Morning came. We made it.

Not as easy as falling off a log but we made it.

Posted on by johnnyboy61 Featured 0

Not As Easy As Falling Off A Log – Part 1

September 26 – Dawn helped clarify a paragraph that was not accurate. See it in the amended text below.

When I encountered a daunting challenge as a child, and I went to my parents for help or guidance, they had a standard response. Mom or dad, or sometimes both, would say “that is as easy as falling off a log.” Then they encouraged me to put forth the effort to overcome the challenge. They did not deal with the challenge for me or advocate for giving up.

As an adult I realize that saying was an exaggerated oversimplification. But as child, I was not facing life altering or debilitating outcomes. Their approach built a can do attitude and developed determination and perseverance into my tool box for navigating through the ups and downs of life.

Flash forward from childhood to 1989. I am a newlywed and my wife is pregnant with our son. We went from a blind date to marriage in thirteen weeks and to expecting our first child and moving from North Carolina to Illinois before our first wedding anniversary.

The paragraph in bold italics below was recounted inaccurately. The accurate version is that the Alpha-Fetoprotein (AFP) results were abnormally low. Low levels can indicate many problems but are only an indicator, not an accurate predictor. That is why the amniocentesis was done. It came back normal and that indicated all was well. But it was not.

On top of that were indications that the pregnancy was not proceeding normally. An amniocentesis right before we moved identified genetic abnormalities. The specific abnormality was unlike any previously detected abnormality so the physicians could not predict how they would manifest in our son.

The fear was paralyzing. With all the changes and challenges going on it was difficult to quash the fear and find hope day to day. One of the things that helped me through the pregnancy and his birth and raising an autistic child is remembering my parents reassure me that this is as easy as falling off a log.

I know it is not easy as falling off a log. But at critical moments their voices, speaking these words of encouragement, were audible and real.

If you are the mother and father of a child with autism, or any other special need. we are with you. We are here to encourage you. You matter to us and to our Creator. God bless you.

Posted on by johnnyboy61 Featured 0

Autism Does Not Discriminate

Autism is indiscriminate. It exempts no people group regardless of race, nationality, ethnicity, religious affiliation, party affiliation, socio economic level or any other characteristic used to describe people groups.

Cited References

https://www.mastermindbehavior.com/post/autism-in-europe

https://www.sciencedirect.com/science/article/abs/pii/S0165178119311850

https://www.abs.gov.au/articles/autism-australia-2022

https://www.sciencedirect.com/science/article/pii/S1750946720301604

Raising children who are diagnosed with ASD is a labor of love. Families struggle with so many challenges and issues that are not present in families of non autistic children. One of the most hurtful challenges is the stigma associated with autism.

Cited References

https://pmc.ncbi.nlm.nih.gov/articles/PMC8992913/

https://sparkforautism.org/discover_article/stigma-autism/

https://www.autismspeaks.org/life-spectrum/its-time-stop-stigma

https://www.mastermindbehavior.com/post/autism-and-stigma-ebd00

The stigma here in the USA is being amplified by incomplete and inaccurate information propagated by some our our leaders and embraced, without discernment, by some citizens. Weaponizing autism for political purposes is malevolent and hurtful. Convince me I am wrong.

Posted on by johnnyboy61 Featured 0

Autism, Hope and Blessings

I dedicate this to every loving mother and father raising a child with special needs.

Parenting a normal child is daunting. Parenting a special needs child escalates daunting to level that can be excruciating at times.  And it puts the parents and child on a metaphorical island emotionally and socially.  Take a look at your community and search for support groups specifically focused on special needs families.  There are not a lot of options.

Many churches have special needs classes for the child on Sunday but there are still precious few choices to socially integrate a special needs child or their parents. And the emotional roller coaster is exhausting.  Heartache, grief and fear are our frequent companions. 

We grapple with terrible questions.  What caused this? Why us? Is there anything we could have done differently to prevent this? Inevitably guilt creeps into our thoughts and we seek answers to the most terrible question – Did we do something to cause this?

Your extended family can provide comfort, if that is what they choose, but they can also choose to make your heartache, fear, grief and guilt worse. Rather than seek to understand your emotions they attempt to inform you and influence you with their answers to all of the previously mentioned questions.  Where is kindness and compassion in that?

Tylenol is not the root cause of my son’s autism.  Thirty five years of medical testing and clinical observation still cannot provide us with a singular, definitive cause.  And at this point the answers are not as nearly as important or urgent as they were. Now our focus is on how we create the best life for the child and the parents. We are a work in progress and we are blessed.  Praise be to God the Father, the Son and the Holy Ghost.

Posted on by johnnyboy61 Featured 0

An Eruption of Uncertainty

Uncertainty has erupted around us. That can bring fear and anxiety. None of us are immune. I hope and pray we will take a moment to consider another persons fear and anxiety and find a way to encourage them. Don’t we all need some encouragement in these tumultuous days we are living in?

Posted on by johnnyboy61 0

Cookies Versus Prunes – Battle for the Aged

During a visit with dad, while he was a patient in an nursing home, the dietician on staff was conversing with dad about snacks. She read a list to him of snacks that were available to him. The list included lots of items like nuts, apples, crackers, protein bars, prunes, raisins, cookies to name a few.

She paused after reading the list, allowed dad a moment to think. Then said “Mr. Evans, what do you think?” Dad answered “cookies are better than prunes.”

Posted on by johnnyboy61 0

I Saw Joy Today – Getting Old Is Not For Sissies

This piece dates back to 2011 when I posted it on Facebook. Still makes me smile.

I encountered a joyful young man today. I went to Buddy’s BBQ in Knoxville seeking a Hawgback tater. You know….the loaded tater with BBQ on top. The guy in front of me in the line ordered one. He was promptly informed that they were sold out of Hawgback taters. Seems that they were popular today.

So I started to leave because I had my heart set on a Hawgback tater. But I decided that a pork plate with tater salad and slaw would have to do. You know being all flexible and all when it comes to food is a good thing.

So I choke down the pork plate, slaw, tater salad and several hush puppies. Then I refill the Dr. Pepper for the road and head out to the car. As I approach my car I see that I will have to wait to get in. A car has parked beside mine on my driver’s side and a lady is helping her husband out of the passenger side of their car which is blocking my way. She is holding a walker for him and he is attempting to rise out of the car seat and stand. But he is struggling a lot.

He sees me waiting and says with a smile and a twinkle in his eyes “Getting old ain’t for sissies!” I smile and nod and continue to wait. He tries again to pull himself up out of the car seat and cannot make it so I ask him if I can be of assistance. He cheerfully accepts my offer to help. So I set my Dr. Pepper on top of my car and walk over to him. Gently I reach around his waist with one arm and hold his hand with my free hand and help him to his feet. He rises to his feet, straightens his legs and then he says to me once again “Getting old ain’t for sissies”. He then promptly headed for the front door of Buddy’s on his own.

I tried to follow him toward the door to offer more assistance but his wife stopped me and with a smile said “He’s fine once he gets to his feet. We should all hope to get around that well when we are 92”!

Wow. I was amazed at the joy I saw in them individually and together. As I got into my car I thanked the Lord for this man and woman and I prayed that I would find that kind of joy now and when I am older.

Posted on by johnnyboy61 0

How Did You Like Star Wars? (Or How to Keep Your Footing on a Slippery Slope)

My mom and dad were both close with their siblings. Shared hard times living through the Great Depression forged strong bonds that never seemed to weaken.

My uncle G is one of my mother’s brothers (name redacted to protect the innocent). He and his family were frequent visitors in our home and we visited their home frequently. There was always a congenial atmosphere so conversation topics ranged widely.

On time when we were visiting together the conversation turned to the latest blockbuster movie that had just been released. My uncle G did not like the movie and spent several minutes passionately stating his case as to why he did not like the it. There was no salty language but lots of adjectives and adverbs were flying around.

When Uncle G wrapped up his movie review he looked at my dad, who had sat through it quietly and non reactively, and asked him “what did you think Doug? Dad responded with four words and a smile “I kinda liked it.” We all chuckled and had a lovely visit.

Amendment – Dad and Uncle G were very close. More like brothers than brother-in-laws. There will be more stories about that in future pieces.

Posted on by johnnyboy61 0

Bitter Pills and Ping Pong Balls

When medicine and science become political ping pong balls the difference between causation and correlation goes into the toilet. It is an effective strategy if you disdain science and medicine but do not have the mental energy or initiative to dig into multiple studies and results.

An example. Recently a reader sent a link to a single study indicating a correlation between Tylenol and ADHD in response to my request for references to studies proving Tylenol causes Autism. They construed that a single study about Tylenol and ADHD definitively proved their political point about Tylenol causing Autism. No point in taking that discussion any further as it would have been an exercise in futility.

Autism is now a political lightning rod IF YOUR LOVED ONES ARE NOT TOUCHED BY IT. But if you are a parent of an autistic child then Autism is a way of life you did not choose but you have to contend with every single day. And there is pain. Sometimes joy and fulfillment but always pain. Pain that the rest of the world cannot comprehend and refuses to try and understand. There are no pills for that pain.

Posted on by johnnyboy61 0

Do You Know Where You Are? Should You Tell?

In the latter days of his life dad was a patient in a nursing facility. During a visit with him I observed a hilarious interaction between dad and a nurse. She was doing an assessment and asking him a series of questions to see how grounded in reality he was. One question and answer stood out from the rest. She asked him “Mr. Evans, do you know where we are?” With zero hesitation, a smile on his face and a twinkle in his eyes he said playfully “I do….but if you don’t know I’m not going to tell you.”

Posted on by johnnyboy61 0

Ginsu Wisdom From Doug Evans

Readers who did not grow up in the seventies and eighties will probably not understand the ginsu reference in the title. Commercials for ginsu knives would present the first knife and showcase what it would do. Then the announcer would ask “how much would you pay?” and follow that quickly with the statement “but wait!…there’s more!”

Dad used a similar pattern when dispensing wisdom. He was an advocate of the philosophy that it is more effective to break lessons down into manageable bite sizes than to try to force feed them all at once. His experience was that leading and teaching were always more effective when information was parceled out in a gradual and thoughtful process.

An example would be how he tried to teach me not to verbally attack or complain about others when disagreements occur. The “first knife” he showcased was the tried and true maxim that “if you point fingers at others then there are three fingers pointing at you.” He challenged me to examine the man in the mirror first.

He would allow a moment for me to reflect on how much I was “willing to pay” to embrace better conflict management skills and then he would close with the “but wait, there’s more” segment of the lesson.

He wrapped up the lesson with this statement – “If you will allow only your own point of view to be a valid or valuable point of view then you only have yourself to blame when you don’t like the scenery.”

Posted on by johnnyboy61 0

Shift Work….Sort Of

Another theme that is woven into our stories is that we enjoy singing with gusto. And our son Joshua shares that joy. Like us, he sometimes struggles to remember the correct words. And sometimes he cannot pronounce the words correctly.

He struggles with the “th” sound. So mother comes out as “mudder” and father comes out as “fodder.” We love the way he says it so we let it ride.

He also struggles with “f’s”. The “f’s” disappear when he speaks. This is not a communication problem for us. Most times Dawn’s brain and my brain automatically insert the “f” and we understand him.

But some songs are problematic. Like Shift Work by George Strait and Kenny Chesney. When Josh sings the chorus with the “f” omitted, the song takes on an entirely different meaning.

Posted on by johnnyboy61 0