Thursday, May 15, 2014

Questions You Don't Think You Should Ask: How Did You Know There Was Something Wrong?


This question is relegated to the taboo because it is thought to be too personal, too intrusive, too right out nosy.  Still, this is a valid question and one which I will address.

I was 24 when I had Isaac and he was our first child.  Sam and I are intelligent and loving, but we were young and naive.  No one ever expects anything to be vastly different about their child.  No one expects anything short of the Gerber baby who will one day graduate Yale with honors and become a President or an astronaut or someone who will change the world for good.  I had taken care of myself when I was pregnant, taken prenatal vitamins, etc, etc, etc.  I expected a healthy child.  I had no reason to expect otherwise.

You are never supposed to take a retrospective view of history, but I will break the rule and look back to flag the clues that were unnoticed and unmentioned along the way.  Isaac's cry was different.  It was louder, more commanding, urgent and incessant.  My recovery room was down a far hall and yet I could hear my baby's voice the moment they brought him out of the nursery door.  The cry is not something I can reasonably describe in print.  It was merely different and he was so very difficult to comfort. We assumed (the doctors too) that Isaac suffered from colic as his cry continued through the first days and into the first weeks and even into the sixth month.  He was comforted only by three things:  the swing (when he was old enough), the sling (a baby carrier that cradled him tight against me) and the Spring (when I fed him).

There were issues concerning his feeding.  Periodically, he would forget how to nurse.  I'm not sure how to describe this but on occasion he would look at me as if I were an alien creature when I would try to give him nourishment.  This was more than a nursing strike.  His eyes were confused and angry. He was hungry and had forgotten the way to get food.  We worked through at least two instances where we had to teach him how to eat.

After he was six months old, the crying mostly subsided and a quietness crept in.  He was a happy baby that enjoyed playing with his toys.  He would babble mostly the same redundant syllables "da da da da da" though these were not in any recognition of my husband or of anything for that matter.  Isaac had a toy car that he loved playing with and would spend hours in the floor with it.  The car had a short string attached to its front (remember this was 1998 to 1999 when such things were allowed on toys...oh the dark ages :) ).  Isaac would sit with his car and instead of pulling it or even using the shape sorter windows to make music, he would wrap the string around his thumb and then unwrap it.  Wrap, then unwrap...again and again and again.  At first I thought he needed some help to teach him how to appropriately play with his car.  I interacted and tried to play with him.  My sweet six month old glared at me and grabbed his car.  I tried again and again with the same response.  He was content.  

Here, dear reader, you have spotted red flags.  Remember please that I was 24 and this was my first child.  Remember too that no one wants to think that anything is developmentally different about their child.  Remember and show grace.

Children are my thing.  My talents lie in reading The Very Hungry Caterpillar and Good Night Moon, in singing every rendition of every early childhood tune and in crafting teachable moments out of just about anything.  I am a teacher and I love children.  I am good at it.  I tried with Isaac during those first couple of years.  I stayed home and played on the floor with him until my knees calloused.  Still, he was quietly content.  I told myself that some people are quiet.  Perhaps my son was one of these introspective old souls.  When I took him out, people commented that he was such a good baby.  To this day, I hate that phrase.  When did we mistake quiet for good.  For the first year, I had to think of things to occupy my time because my son was such an "easy" child.  I sewed.  I baked cookies.  I started a cookie ministry to the local hospital.  Every week, we would leave several batches of cookies along with a Bible verse offering comfort to those in the ICU waiting area.  I honestly didn't understand the other mothers who complained that they could not get anything done.  My child demanded comparatively little.  

And then, things began to change.  He began missing developmental milestones.  He didn't care to imitate.  He explored objects differently from most children.  He held the fork to the light and watched the light pass through the prongs.  It was sometimes difficult to get his attention.  He was late to walk. He was less tolerant of change.  He noticed when we crossed from tile to carpet and complained loudly through screaming tantrums.  

Again, dear reader, remember that I am pointing out the red flags of my journey.  You began this piece knowing what you were looking for.  I was enjoying motherhood and assuming the perfection of my child.  By this time, I was pregnant with Isaac's sister.  We wanted to have at least two children and had thought that having them close together made as much sense as anything else.  You're in diapers...You're in diapers.  Remember that you are reading our history and offer only grace and love.

There were many times that Isaac would cuddle and look up at us.  He would giggle and interact.  Autism is pervasive but there are moments especially with young children with autism that appear typical.  Tantrums were easily explained by colic or teething.  Babies cry.  Little ones throw fits.  It was almost perfect...just not quite ... and what wasn't perfect might have been a childhood expression of individualism.  It took a long time to put together the puzzle of what was going on with Isaac.  There is more to written but this is enough for today.  We can pick up again tomorrow.

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