Autism Detour: Dr. Jerk, Dr. Doom and Two Angels

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The birth of my fourth child, a beautiful healthy boy, came with great expectation after experiencing three daughters. I imagined all of the mother-son events and milestones, the little boy activities we’d share and the balance he would bring to our happy little family. Mothering him was quite routine for the first three months, and I had no indication my son was anything but perfect.

Labor Day weekend J.R. turned five months. He was sitting up, rolling over, doing all of the things he should at that age. I put him in the high chair to feed him his daily few spoonfuls of rice cereal, that I recently introduced. I noticed his head drop forward as if he suddenly lost muscle control in his neck. This happened a couple of times and he began to fuss a little. I picked him up out of the chair and soothed him. Later that day I tried again and his head dropped just like before. Throughout the weekend this strange head drop occurred each time he was sitting up. When he was on his back he began lifting his head, legs and arms as if trying to sit up, then he would lay back down. He did this several times straining with tight fists then began to cry.

I checked for the usual things, constipation, fever, etc. but could find nothing wrong. It was time to call a doctor. The next morning I drove my little boy to the clinic. The doctor examined my son as I tried to explain the symptoms. It was difficult to tell if he was listening to me. At the end of the examination he determined that it was either colic or an ear infection. I was puzzled and questioned why either of those conditions would cause my son to lose control of his head or strain in sudden muscle tightening resembling a crunch sit up. The doctor said “I’m sure he’ll be just fine mom, we’ll get him started on some antibiotics and I’m sure he will be back to his happy self in a couple days.”

That was it. Then he sent me to the pharmacy waiting room. While sitting there my son started having what I was now referring to as an “episode.” Just then the doctor who had examined J.R. walked by and I asked him to come observe the behavior. Without even looking at me the doctor said “Mom, he’ll be fine, just get the medication and relax,” then he continued walking out the door. I was stunned. My husband sided with the doctor. So we went home with the antibiotics and I hoped for the best.

For the next few days the episodes became more frequent and lasted longer.  I called the clinic to demand another doctor immediately.  We met with a wonderful tiny doctor who put us at ease right away. Fortunately, my son had an episode while sitting with the doctor and she pointed her finger and said, “I know exactly what this is.”  She then picked up a phone, called for a hospital room for me and J.R., and ordered a car to take us there. Dr. Leman referred to my son’s behavior as a “salaam seizure.”

I spent five days in the hospital with my son, and after having multiple tests, scans and exams a young doctor with an entourage of five interns came to give us the news. He handed me a faded copy of one paragraph from a medical journal and told us our son was experiencing Infantile Spasms. When we asked for a prognosis and treatment he coldly stated that it was not good, that our son would most likely never speak or feed himself. He commented that he would be severely retarded and probably end up institutionalized. That was it? No suggestions or consoling? The doctor left us stunned and in pain.

A ray of light came along with a brilliant Neurologist, Dr. Lim. When I relayed the information we were given from the other doctor she said, “Don’t listen to that. There are many treatments and therapies that are available for your son. We will continue to work with him and help you through this.”

Today, at nineteen years-old, despite his diagnosis of Severe Autism, J.R. not only feeds himself but can use the microwave, use a computer and find his favorite videos on his tablet.  He plays video games and loves to swim. While he may not be able to live independently, he certainly will not need to be institutionalized. Never take anyone’s word as a finality, never give up hope and always focus on what CAN be accomplished. That, plus your unconditional love, will go a long way in defying the odds.

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Cheryl Hunter

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I am a writer, mother and grandmother living in California with my wonderful husband and best friend. My four adult children bring me joy and have filled my life with purpose and blessings beyond measure. I have two grandchildren (so far…) who add an extra layer of beauty and love to my life.  My three oldest children are confident, successful young ladies who continue to amaze me. My son is the youngest, and his adventures in Autism have led us all through a lesson in patience and compassion that we would not have otherwise experienced without him. Life is good. I never run out of material, because my life has taken me on so many journeys that I may not have enough life time left to share them all on paper. This is a good thing, it leaves me with a sense of purpose and urgency to tell my story or share someone else’s with the world. My blog is www.evescrossing.com and my book is I Have A Breast.

3 comments

  1. Maude says:

    After “living this”, I find it difficult to read. All the fear and pain resurfaces. It was such a difficult time for family
    and there was nothing to do to change the outcome. I wasn’t much help to my Daughter or Grandson.

    • Cheryl Hunter says:

      Maude, I beg to differ. You are an amazing mother and were there in every way you could be, as you continue to be. Life happens and we can choose to stay in the pain or find ways to use it for growth. Every life is meaningful, no matter how brief, and every moment is sacred no matter how difficult. Love and hugs to a great mother.

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