Friday, February 24, 2012

This is the post that has been written and re-written in my head more times that I care to share.  Its time to get it off my chest in some small way.

When my son was  an infant, I labelled him serious.  It was difficult to get him to smile, laugh, make eye contact.  He seemed to be developing normally otherwise.  I figured his personality would be more like mine; quiet until he was comfortable, then goofy when he trusted you.  I was pretty much on cue with that.  He seemed to learn things fast.  I thought he was a genius at eighteen months because he was reading along with me, counting, lining his red cars in a perfect row from smallest to largest.

He hit two and I braced myself.  I was waiting for something terrible to happen that never really did.  Sure he had tantrums but not anything monumental.  I could handle them.  He was given time outs in his room because he wouldn't sit on the floor.  He didn't understand that he had to stay in one place.  No big deal, he went to his room.

Three hit and I started to worry about school.  His vocabulary seemed to have stalled.  We were not having two way conversations that most kids at that age were having with their Mom.  I brushed it off.  School was more than a year away and in a year there is a ton of development.

Three was not fun.  And by not fun, I mean it didn't think I was going to survive.  We had wild tantrums in the street.  Hair was pulled, arms were bitten, shins were kicked.  No communication as to why it was happening,  but I could gauge pretty accurately from external cues what was going to set him off.   Not walking in the direction that he wanted to walk in, a different bedtime routine, his brother taking his toy, leaving a location he wasn't ready to leave.  All sound normal for a toddler who is desperately trying to control his world.  What I also noticed was my huge inabilities to reach him during those meltdowns.  I couldn't soothe him, I couldn't explain why we were doing what we were doing in a way that he understood or accepted.  I couldn't get him to look at me, I couldn't soothe him when he hurt himself, I couldn't break his attention away from the repetitive play that he was involved in.  I knew something was there but I wasn't sure what.  I always saw my Sister looking at my at different times with questions in her eyes but she never asked the question because she knew I wasn't ready to give her an answer.

On the night of his fourth birthday he was in his room, standing on the rail of his brothers crib and jumping off of it onto his bed.  There was no fear there, no comprehension that he could hurt himself   He never understood danger.  My Sister was in the room and gently asked me if I thought something was there. I started to cry and say yes I think there may be something wrong.  I cried because I knew she saw what I was seeing but never once  used the words different or wrong.  She used the words special.  I had seen her watch him over the years and I knew she saw the same things I did.

At his four year old check up his pediatrician watched him and listen to what I had to say about his development.  He made a referral to a specialist that deals with developmental and attention disorders.  I remember sitting in the specialist office, willing myself not to cry but looking for a little bit of validation that I wasn't going crazy, that maybe my son needed some extra help.  He put his pen down, looked at me and said,  " Mom, what do you think is wrong?"  The tears came because it was my opportunity to get a little validation.  I had gone online and done some research.  I had nailed down some of his behaviors and attributed them to something on the Autism spectrum.  He listen to me, let me cry, and redirected my thoughts.  He felt that it was possibly Aspergers  or a Pervasive Development Disorder.  He immediately put in a referral to OCTC for a physiological assessment to determine the root cause of M`s development delays.

I have cried A LOT over the past year for many reasons.  I don't want my son to be labelled.  I don't like it when people tell me that Aspergers is the excuse de jours  for behavioral problems with children.  I don't like it when  people tell me that it will be really unfortunate if he doesn't have anything wrong with him and that I have taken it to the level that I have because now all of this will be in his school file.  I don't like it when someone who is supposed to love us sticks their head in the sand and avoids the issues.  I don't like being the only one to advocate for my child. I don't like feeling alone. 

He had his first appointment at OCTC today.  Not with a psychologist but with some different therapist that could recommenced strategies to help him during the long wait for his assessment.  The resources that they will provide is astounding.  Speech therapy, dietitians, social workers, occupational therapists.  Nothing short of amazing.  I`m taking what ever I can get with no pride getting in the way.  He deserves everything, this kid of mine.  All I really want for him are the tools that he needs to grow and succeed.  I don't need my child to be a doctor or lawyer.  I will never put that sort of pressure on him.  I am not the competitive Mom that has their child enrolled in so many activities that they forget what it is to just play.  I have walked away from different opportunities for myself over the past year because the timing is wrong.  I put myself on the back burner frequently because that is what I believe I should do.  He needs me to advocate for him and that is what I plan to do.

Love you kiddo.

“So be sure when you step, Step with care and great tact. And remember that life's A Great Balancing Act. And will you succeed? Yes! You will, indeed! (98 and ¾ percent guaranteed) Kid, you'll move mountains.”
― Dr. Seuss

1 comment:

  1. Oh Jen, I just happened to click on your blog link after you commented on mine, and I scrolled down to read this. I can honestly say I KNOW where you are right now. I was there when my son was 3 and a half years old. I was there, scared, afraid of the vast unknown that was his future. I am happy to report that, at the age of 11 and a half, my "Aspie" has pulled through the challenging years... years of learning how to get along with other kids, years of struggling to get the whirling thoughts in his head down on paper in the classroom... years of speech therapy and weekend tutoring sessions. He's done beautifully, and I'm sure your guy, with all the love and support he has at home, will do just fine in the long run.

    xo Barb