Grandparents and Autism: A Mother’s Perspective

11 01 2008

My parents retired close to us so they could help with J. That really was their primary reason for moving from sunny Northeastern Brasil to gloomy Northeastern Ohio.

Two hip replacements later I think they will be helping quite a bit in the near future.  My mother just had surgery and is in a nursing home recovering and doing physical therapy so I’m trying to help my dad keep his sanity. We had planned– for two weeks– to go see the new Veggie Tales movie; The Pirates Who Don’t Do Anything, tonight.  J was counting down the days! I made my Dad’s favorite dinner and the plan was in motion. J came home from school talking about it– he knew what time we were going and had his (medicated) water and fruit snacks tucked into his coat. It was a go!

Fifteen minutes before my dad arrived I went looking for J. He was in bed, with his jammies on and announced that he was tired and wanted to stay at “J’s House”. Ok… I don’t know what changed but we took it in stride and played Scrabble instead. My dad was really cool with it– he was never this flexible when I was growing up!

The only constant with Autism is that it’s not predictable.

 The diagnosis– Autism– was a crushing blow to my husband and me. My parents didn’t see him day to day.  They couldn’t understand beyond the stereotype. That’s changed now– my parents are reading up on Temple Grandin and learning about J’s idiosyncrasies. They know that Autism doesn’t mean “Rainman”.

Autism conjures images to grandparents that parents don’t see. Perhaps because the definition has broadened in the past couple of decades I didn’t grow up with the same images that my parents did. It must be really hard for someone who pictures “Rainman”– or catatonia– to believe in significant progress, verbalization, being a functioning adult.

My parents celebrate victories at least as much as we do– The first time my son chattered all through Church my mom was so happy she cried and told everyone on the way out that “a year ago he couldn’t talk!” (My mother doesn’t cry.)

My son’s grandparents contribute so much to his life– they read to him– listen to him read, they ask him questions and have the patience to wait– however long it takes– for an answer.  My mom even made him pancakes for Thanksgiving! They are a real part of J’s progress.

The next generation– one who has an incidence of 1 in 166 with Autism– won’t have the same images that my generation has.  Imagine growing up in a time when everybody knows somebody with Autism? Will the next generation understand that the Autism Spectrum has such a wide range that there is no real stereotype?

I hope the next generation is kind, educated and anti-stereotypes. I hope J will someday be a good grandfather and will be able to tell his grand-kids about my dad.

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Pirates, Sumo Wrestlers and a million DVDs!

2 01 2008

With J I have to put aside my preconceived notions about so many thing– Christmas morning is one of them. 

At our house Christmas morning is different from what I remember as a kid. My sister and I used to wake up really early, jump in bed with my parents to wake them up and it was crazy fun! Loud, laughing, messy and Fantastic! At my house it’s nothing like that– we wait for J to wake up until we’ve had several cups of coffee, my hair is done and makeup on, dogs walked and our day begun… when I can’t stand it anymore, my husband and Ernie the Beagle head up to haul the kid out of bed. 

J enjoys every gift he opens. He watches the DVDs, plays with every toy and even tries on the new clothes,.  It’s a long process and such a joy to see him enjoy his gifts.  I have to fight with myself not to rush him and hope he’ll get them all open before my parents arrive for brunch.

I’m really glad he appreciates everything he receives and am very thankful that he is an only child. His idiosyncrasies would drive another child crazy! On the other hand he might be helped by another kid around pushing him out of his own universe regularly.

Back to Christmas: This year he got a Veggie Tales Pirates ship and he’s barely put it down since Christmas morning! Veggie Tales have been so good for him.  I don’t think he “gets” Sunday School although our pastor has been wonderful about having a class just for him with picture cards used for the story.

Christmas and birthday come right on top of each other at our house– J’s birthday is January 1 so we rush to take down the Christmas decorations, thin out last year’s toys and prep for birthday.  Because school is out we usually just have grandparents over and have a small party for him– cupcakes for his class when they get back to school later in the week.

I’m so proud that this year I got it right.  His birthday cake was a 3-D Pirate Ship– and we gave him a digital camera. He’s a budding director and we committed that we would support whatever his interests and develop his talents.  I’ve been working with him on flash, zoom and composition. He’s got a good eye for layout and just needs a little technical support.

You’ve all heard that Autistic kids have focused talents– I’m not talking about Rainman– it’s not like that in real life, although J has an amazing memory and a real knack for speed counting. He has some musical talent but isn’t interested in learning the technical aspects of it, he does voices– Alvin and the Chipmunks, Larry the Cucumber and Chowder among others so we never have a dull moment– the trick is guessing the context if we’ve missed the episode!   He talks in movie quotes and is really good at fitting what he says to the situation. Pretty funny most of the time.

Anyway, I’ve committed to writing my blog at least twice times a week this year, loosing 15lbs, teaching J to edit video, joining something– PTO or the County Historical Society and doing yoga twice a week.  I’ll volunteer for a political campaign if Richardson is on the ballot. I’m really excited about his plans for improving education! I love being a mom and love being at home to really do the “mom thing.” I’m thankful for a supportive husband…

Happy New Year!