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.


Ten Things Every Child With Autism Wishes You Knew– Part 1; I am a Child

11 01 2008

I’m reading a new book– Ten Things Every Child With Autism Wishes You Knewby Ellen Notbohm. The following is from her article by the same name:

I am first and foremost a child —  a child with autism.  I am not primarily “autistic.”  My autism is only one aspect of my total character.  It does not define me as a person.  Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?  As an adult, you have some control over how you define yourself.  If you want to single out a single characteristic, you can make that known.  As a child, I am still unfolding.  Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low.  And if I get a sense that you don’t think I “can do it,”  my natural response will be:  Why try?

In the First Chapter she talks about predispositions we have towards labels.  Last weekend my son got a new Sunday School teacher. She is a lovely older lady who really wants to help J. She sat in on his old teacher’s last class with him and afterwards commented to me that she was really surprised by how well J did. I sang his praises– he’s a great reader, he’s really sweet and funny, etc. After reading the first chapter of this new book it occurs to me that she had a set of stereotypes she was anticipating she’d have to deal with.  (Bless her willingness to teach him anyway!) Because of her willingness to tackle this class and her predisposed notions, she will be able to learn from him. He will make her life richer.

I know that I sometimes clarify– “you know J is autistic”– I don’t introduce him as autistic but I do use it as a crutch to explain why he is how he is.  I need to give him more credit and remember that he is first and foremost a child– a georgeous, funny, sweet child!  I am truly blessed by Autism– strange, huh? J is who he is because of Autism and I am so lucky to be his mom!

I certainly don’t mean to be a Pollyanna– there are challenges– REAL challenges but, I wouldn’t trade him in… He is working hard to overcome his challenges, he tries– he’s a good boy who has to deal with things that I can’t relate to and in-spite of it; he is cheerful and persistent.  My son will overcome his speech and social issues. He will find a place where he will be a productive member of society. He will– and, I’ll help him.