Tag: autism

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.

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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.

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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.

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Inside Out and Backward

Our autistic son is a loving, kind and compassionate man. He is also hilarious. About fifteen years ago we were on a family vacation trip to Florida. He is an early riser so I get the pleasure, and it truly is a pleasure, of taking him out to breakfast when we travel. This particular morning I was a little groggy when I woke ups so I did not review his clothing choices before we headed to the Chick Fil A.

After we received our meal and sat down to eat I noticed that his tee shirt was on inside out AND backward. I began to fuss at him about that and he listened patiently for a while. But as I went on and on, he raised his hand to stop me and then he scanned the entire restaurant with his eyes. He then looked at me eye to eye and said “it’s okay dad, nobody here knows me.” Pure gold!

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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.

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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.

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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.

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