Monday, August 8, 2011

In the womb

The first time I heard the heartbeat on the monitor, I cried.  I wept because I had a feeling that something was wrong from the moment I found out that I was pregnant.  I found out later that many women acknowledge pregnancy worry, and I dismissed my feelings as common.  Looking back, I can say that my intuition was correct; something was wrong from the start.  From what I know so far, researchers do not know what percentage of the spectrum population comes from mothers who experienced a feeling that something was wrong in utero and in infancy.  In the womb, I did not feel my baby move around or kick very much.  It left me unsettled after hearing other expectant mothers blush as they tell stories of their acrobatic belly dwellers.  Everyone dismissed my feelings including my husband and my mother.  I knew something was off during pregnancy, and I knew at birth.  While I understand this is rare, I am a testament to the fact that it does happen. 
In the first three months, I felt like my son was not bonding with me.  The rejection left me at the mercy of post-partum depression.  He wasn’t breast feeding correctly.  At two weeks, the doctors said that if he did not start eating more, then they would have to admit him to the hospital for “failure to thrive.”  I cried tears of guilt, which led to feedings every hour to every hour and a half.  The old school notion that autism is caused by “cold” mothers is preposterous.  Quite oppositely, my intuitions made me dote on my child even more than normal.  I insisted on breast feeding, because I wanted to have a skin-on-skin bonding experince.  I had heard somewhere that if he did have autism, maybe that will help.  He did gain enough weight to stay out of the hospital, but the eating issues continue five years later.  I worried every time we went to the doctors; I worried that someone would notice that my child was not acting like “normal” babies.  In fact, not even my family could see what I could see as his mother.   
Others could say his name, and he would look but only for a second before looking away.  I call this eye gazing.  After three months, I found myself crying at the OB’s office during my follow up visit.  At the time, I couldn’t admit to anyone what was happening.  The doctor said if my depression couldn’t be controlled soon, then we would have to consider medication.  I told her that would not be necessary, and in my mind I was determined to make a connection with my child and make him happy.  It didn’t happen overnight.  It didn’t even happen in a year.  I still work to keep the tantrums to a minimum, but back then I did not know how.  I bought a book about baby yoga and tried relaxing techniques including aromatherapy at bathtime.  He liked to be pat on the bottom harder than a typical child.  I continued to look for ways that would stop the crying.  We bought one of every single pacifier type known to man, and not one of them worked. 
He cried nonstop for the first six months.  If he wasn’t eating or sleeping, he was crying.  Intense motion and extreme cold air could calm him for a moment or two, and the Jumperoo quickly became a great investment.  My family and friends call that colic.  My grandmother said things like, “If you don’t do something to get that baby used to lights and sounds he is going to have a hard time with life.”  Even now, I chuckle thinking about that.  How was I to do that?  My solution was to let him wear sunglasses in Wal-Mart, keep the lights down low at home, and the television at a minimum.  After all, why can’t he be comfortable in his own home too?  Also, I soon learned that I would have to give up my vacuum cleaner forever in exchange for hardwood floors.  The noise of the vacuum still freaks him out. 
Those first six months were hard to deal with.  It was full of internal struggle, denial, sadness, and guilt.  However, I learned that intuition is a powerful thing.  I would like others to know that if they experience red flags about a child’s behavior, then it is best to pay attention.  It is possible to notice autism during infancy.  We are living proof of that concept. 

Tuesday, April 19, 2011

Sam and Me

Have you ever gone to an amusement park, found the perfect ride, and went through the lines over and over to ride it?  What is the draw?  Is it the rush caused by the highs and lows?  Is it the worry, anxiety, and tension that comes as the click click click goes uphill?  Is it knowing that the high will quickly drop out from under you into a helpless panic that you can't control until the ride stops?  I don't know what made me get on that ride or what made me keep riding.  But, the thing is...I had a choice to get off the ride after a few short minutes.
I think living with Aspergers is more like riding a crazy train.  We are enclosed in a capsule as we go through life looking at all the neurotypical people outside.  Sure, it goes up and down like a roller coaster, but it doesn't offer that sense of freedom that comes from riding in the wind.  I don't know what freedom is like anymore.  A train ride can last for hours or days, hours going downhill, days going uphill, but the Aspergers Train is endless.  Without choosing, Sam will ride it for as long as he lives.  I choose to ride with him side by side.  It is up to me to make the most of the journey, the adventure, and simple triumphs.
My son Sam was diagnosed at the age of four.  But, the truth is, we have been living with symptoms of Autism since he was born.  I just chose to dismiss my concerns and live in denial.  It was not until pre-school screening that I had to face Sam's reality. 
We felt alone, confused, guilty, responsible, and helpless.  I know that there are others like us in the world - others who don't feel heard - others who feel isolated - and others who feel like life with Autism Spectrum Disorder is a crazy ride.  Most importantly, I want to find others who want to be the best parents and loved ones for their child by giving them the support that they need and deserve.