It's Not About Me - What it’s like to be a grandmother to a child with autism

I cried all the way home from dropping off my 5-year-old granddaughter at her drama school.  I had kept up a good front while she was in the car, but inside I was crushed.  Her brother, and twin, had just looked at me, crying and screaming from the floor of the school hallway, saying “Go away, go away, YOU, go away!!!”

Any woman who is a grandmother will understand why this bothered me so much.  Normally when I pick them up from school, I get big hugs and grins and they yell out, “Nana!!” and it warms me to the core.  But today was different.  There were half-days-only of school and they were in after-school care  - the routine was different.  You see, my grandson has autism. Routine is very important to him.  If there is going to be a change in normal routine and you don’t give him a heads-up that day and prepare him, he does not respond well.

It just so happened that my daughter had forgotten to tell him I was picking his sister up early and she would pick him up later.  So when he saw me, he assumed I was picking him up early, too.  Also, the pre-holiday after-school program was having a Disco Party with loud music and he does not handle loud anything very well.  Normally he puts his hands over his ears in any stressful, new or loud situation.  So it was a Perfect Storm of circumstances for him to have a melt-down.  As he was screaming and rolling on the floor, kids were gathering and staring and one of the after-school teachers, who did not know what was going on said, “What, you aren’t taking them both?”  It was horrible for me, my grandchildren and teachers alike.  I had the teacher call my daughter and explain the situation and I got out of there quickly, so he could calm down.  When his mother arrived, he was fine and sitting eating a candy cane.

As I drove home, my crushed heart was also crying for him.  He was special from the time he was a tiny being inside the womb he was sharing with his sister.  Consistently undersized, we worried and fretted until he was born.  He was only 3.5 pounds at birth.  We learned later that his size is due to a growth disorder called Russell-Silver Syndrome.  It wasn’t until he started pre-school at age one  that the red flags started to go up for teachers, evaluators and his family that his socialization skills were so different from the other children his age and autism was suspected.  We just thought he was quiet and a bit of a loner.  He was very smart and could read by the age of three and count to 100 by 2’s and 5’s around that age.  But put him in a loud or unexpected situation and he could lose it fairly easily.  Birthday parties started to be a nightmare – about the time the kids started singing “Happy Birthday” and blowing out the candles.  He is in a regular Kindergarten class now and does well, except for being easily distracted and sometimes does not follow directions.  The kids just think he is quirky and that’s OK.

But back to my story.  I realized by the time I got home that he probably never will be like other typical kids.  I must be prepared for the times that he has a melt-down not to take it personally (which I did).  I have to understand that his brain works differently – which I do understand in my logical brain, but on my emotional Nana side, it hurts. I need to just continue to be compassionate, love him where he is (which I do) and treasure every moment I have with him.  He is his own little unique, precious self.  I realized it’s not about me and my tender feelings at all.  It’s about being grateful for his presence in the world and for the special young man he will become.