What my son’s diagnosis was like

What my son’s diagnosis was like

Scott was my first – a happy baby, social to a fault, and loved to babble.  He was so happily vocal that we were kicked out of the Library of Congress in Washington, D.C. when he was only five months old.  Not because he was a criminal, but because he was so focused on entertaining those around him that he was disturbing the library patrons.  His bubbly, outgoing personality, evident even at that young age, prompted the tourists around him on that trip to call him “the happy baby.” 

Nursing him was a production, and Scott thought that he was the star.  He loved to smile and giggle while he patted my breast, and he acted like every meal was a gourmet feast with multiple courses, and a table set just for him.  He spent the longest time at each nursing session of all of my four sons.

He was a very active, alert baby with a special love for music, especially Scott Joplin.  I taught private piano lessons before and after he was born, and spent considerable time playing ragtime music.   Each time he would hear it, he would kick and jab me while still in the womb. Sometimes it seemed as if he was even in rhythm with the music. 

By the time he was 12 months old, he had a clear 5 word vocabulary, and by 15 months he was stringing several words together and running around the house.  All was well.  Then, for some inexplicable reason, a downward spiral happened at fifteen months.  Ever since then, I have questioned what could cause such a sudden change.  Within about two weeks of that fifteen month point, I lost my baby.  My formerly happy baby no longer smiled.  Nor did he talk.  He didn’t even look at me anymore.  Instead of running to me, he ran away from me.  Instead of talking, he began to scream.  Loud, high-pitched screaming – the kind you would hear if your child had just fallen out of a tree and broken his leg.  He reserved the worst screaming for when I tried to touch him, hold him, or change his diaper.  Mothering had changed from a joy to a nightmare, all within a month.

I have wracked my brain ever since, looking for the cause of such a sudden change.  Was it the MMR he received at fifteen months?  It seemed like a totally innocent event at the time.  We came home that night, and he was more cranky than usual.  He ran a slight fever for about a day, for which I gave him Tylenol, and within a day or two he was fine.  I put the incident out of my mind, but is it possible that it was the cause?  We will probably never know. Is it also possible that the drug pitocin, given to speed up his difficult, 36-hour labor, was a contributing factor?  A recent study at Duke University, published in August of 2012 in JAMA Pediatrics, suggests a possible correlation.  Or it could be this, or that……Get the picture?  We probably will never know for sure.  For the good of society, I am not opposed to vaccinations but encourage parents to be sure their child's immune system is not weakened by any illness when vaccinated.  I also wish doctors would not try to vaccinate for too many diseases at once.  No one knows the exact cause of autism, but we need to be more aware of risks.

Totally crushed and looking for answers, I took him to our pediatrician.  Naturally, he sat quietly on my lap while we sat in the examining room.  It was almost like taking your car to the mechanic for a problem that existed every day for a month, then totally stopped when you arrived in the shop, and you were perceived as a nutcase.  He proceeded to inform me that this was just a phase that he would soon grow out of, and since I was a first-time mother, I must be imagining things, that there really was no problem.  I glared at him, told him I was not an idiot, and I knew a problem when I saw it.  I marched out of his office without paying the bill, never to return.

Soon the merry-go-round of trips to medical professionals began in earnest.  My husband, Ken, and I went from doctor to doctor, trying to solve the mystery of our son’s sudden retreat from our world.  Day by day, he went deeper and deeper into himself.  If he wasn’t screaming (up to 16 hours a day), he was repetitively moving his toys from one location to the next, back and forth, back and forth, for hour after hour.  He actively resisted any human contact, and began throwing food that was not to his liking instead of eating it.  Changing his diapers was a nightmare.  Sometimes, I would have to literally sit on him because he would scream every time I touched him with a baby wipe.  The normal things a mother did to give comfort instead caused him pain.

Sleeping was another problem.  Sometimes, he would awaken in the middle of the night, screaming, and nothing would comfort him.  The only thing we could do was to take him out in the car and drive for hours, (before gas was almost $4 a gallon!) or put him in his stroller and walk down the street.  Somehow, the motion of the car or the stroller calmed him and would send him off to sleep. 

My life and our marriage began to deteriorate and crumble under the stress.  I was basically housebound.  Shopping and any kind of activity outside of the house was impossible with a child who screamed all day, every day.  I stopped answering the phone unless I absolutely had to, especially if I thought it was a business call (my husband was a self-employed computer systems analyst, and I was still teaching private lessons at a music studio).  I never knew when my sanity and my husband’s business professionalism would be compromised by his high-pitched screaming. 

Each night when he came home, instead of being greeted with a welcome kiss, my poor husband would be met by his wife holding Scott, coat and purse in hand, saying “I’m out of here!  Maybe I will come back, and maybe I won’t!  Have fun!”  He just gave me a forlorn, helpless look.  There seemed to be no end to our misery.


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