life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

Lessons Learned May 2, 2011

Filed under: Uncategorized — the jay train @ 3:56 pm
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A couple posts ago in, “This Unpredictable Life”, I talked about feeling like MY son shouldn’t have autism.  I talked about how beautiful and perfect he is in every other way, how smart and happy he is and what a bummer it is that Autism had to come along and make him … well … not what I had imagined.  Well, now I find myself feeling guilty and selfish for having those thoughts.  They were real.  I had them so I still think the post should be published.  This is not a place where I want to censor myself.  My good and bad thoughts will be posted.  Today, I am feeling very humble. 

I recently met a little boy named Patrick.  At 2 yrs and 10 mths old, he’s slightly younger than my Jay.  I met his parents through a local on-line meet up.  This was my 1st up close and personal interaction with another autism family.  We decided to meet at a local park.  First I met Patrick’s Dad and we immediately struck up a conversation about when we 1st saw the signs, and how much and exactly what therapy each kid was getting and how important having someone who understands what you go through everyday is.  At this point, Jay was off playing with CC (my husband) and Ace (my older son).  Patrick was napping in the car with his Mom.  Eventually Jay came running over to us with a big smile on his face.  Patrick’s Dad said hi but there was no response.  Jay just played happily with his trains on the picnic table.  I tried to prompt a hello but there would be none.  Jay looked at Patrick’s Dad and then looked back down and continued to play.  Usually I feel the need to apologise for those behaviours and explain why he is that way but not that day.  That day no explanation was necessary.  Understanding was in the air.

Besides the understanding look though, I did notice that Patrick’s Dad had something in his eye that I couldn’t read.  He was looking at Jay with an expression of … longing maybe.  He touched the top of Jay’s head and said “he looks normal and fine to me”.  I didn’t quite know how to respond to that.  I was thinking, Autism doesn’t have a look.  We talked some more as Jay happily, tried to fly a kite and ran around going from slide to slide and climbed a rock mountain.  Patrick’s Dad couldn’t take his eyes off him.  I didn’t understand why.  I had assumed his son was exactly like mine.  Eventually Patrick and his Mom made their way to where we were.  I saw him and my heart broke.  Poor Patrick, just existed.  As CC put it, he was almost like a rubber chicken.  You see, in addition to his Autism, he also has really low muscle tone and suffers from seizures.  He had a hard time just standing or holding his head up.  So there was definitely no running and jumping and climbing.  He didn’t want to play.  He didn’t smile.  He was just “there”.  A shell of a child.  Now it was my turn to stare.  I tried not to but I couldn’t help but feel sorry for his parents.  I am so lucky.  SO lucky that Jay smiles at me.  That he runs to me for hugs.  That he says no and hi (when he wants to).  That he plays with his brother sometimes.  That he has interests., even if they’re limited.  That he sleeps through the night and has done so every night since he was 10 mths old.  I am so lucky that I have Ace.  My amazing, chatterbox of a 4 yr old. 

Patrick’s parents are scared to death to have another child.  They worry that they will end up with 2 children who need special help.  They wonder if they have the energy to have a 2nd child even if he/she is neuro-typical and healthy.  They are already stretched so thin taking care of Patrick.  His Mom quit her job to stay home with him.  In addition to the therapy he gets through early intervention, they pay for 30 hrs of private therapy per week.  He rarely sleeps through the night due to his seizures. 

At 1 point, I was just about to ask what autism symptoms Patrick has since the seizures could be causing some of his developmental delays and then the ice-cream truck came by.  Patrick flailed in his Dads arms and plugged his ears with his fingers.  I had never seen this so up close.  An ice-cream truck.  That hurt him.  The poor sweet child can’t enjoy an ice-cream truck.  Like I’ve said before, Jay doesn’t have any negative reaction to noise or touch or smell etc.  All I could think about was that Patrick shouldn’t have to deal with so much.  His parents shouldn’t have to deal with so much.  His parents seem like good people.  I felt guilty for having so much of what they desperately want.  We actually have good days.  Lots of them.  It’s different when you read about things, or even see them on TV.  On that day in the park for about 2 hrs, I learned a lot about Autism, a lot about my journey with it compared to other peoples, but more than anything, I learned deep in my core to be grateful … even on our bad days.

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