Grandparents and Autism– “You’re old”

16 01 2008

My little guy is a great reader and his grandma is a great listener. A couple of nights ago J was reading her a story when he paused, took grandma’s hand in his, studied it and said “You’re old.” He pointed out her wrinkles and looked up at her face. She showed him her “old age spots” and compared his 8 year old hand to hers. She has wrinkles, he doesn’t. She has spots, he doesn’t.

J loves his grandmother and she loves him. And, as J tells me so often: “And that’s all that really matters.”

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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.





“I Must Go To The Hospital”

4 01 2008

My mother had surgery today to replace her second hip so I left home before my son woke up to sit with my Dad at the hospital. J knew I was doing this. We’d talked about it a couple of times and my Mom told him when she was at our house a couple of days ago. He was prepared as best we could for the change in routine.  All went well for her so I was home in time to meet J’s bus.

The second he got off the bus he hollered “I must go to the hospital!” The mama bear kicked in and I asked if he was ok, where does it hurt, what’s the matter? He kept saying that he had to go to the hospital his leg was hurt and he limped up the driveway.  For about 2 minutes I thought here we go again… I’ll take him to the emergency room and hope there really is something wrong– sounds terrible but, J doesn’t react to pain like the normal temper-tantrum throwing kid so, I never know. (In another story, for another day, I’ll tell you about the broken elbow incident.)

By the time we got to the front door he wasn’t limping and was starting to quote the movie Du jour– Veggie Tales Sumo of the Opera.  He seemed to be ok for a little while and then it started up again. “I must go to the hospital!”  Like a ton of bricks it hit me– he was talking about going to see his grandmother (who he calls Vova– Portuguese for Grandma).

The last time she was in the hospital– late September– he HAD to go see her to read her stories. It was great.  He reads really well and, in typical grandmotherly fashion, she humors him.

Although we had talked to him and he knew that I wouldn’t be home to get him off to school, he was thrown off by the change.  The note from J’s teacher said that he had been ok but a little off today.  We do our best to let the school know when things are a little different so they can deal with changes. Preparation and familiarity are key to good behavior.  For instance– J takes the same tote with toys every time we go to Church or friend’s homes. The toys may vary but the bag is the same.  He’s high functioning autistic– speech is pretty good, eye contact is pretty good etc. but, he comes across as very young and rather eccentric.

We didn’t go to the hospital and he’s ok with that.