Thursday, June 23, 2011

"Different, not less."

Since it is summer break, I occasionally have a bit of this enigma some people call spare time, and in order to spend some of this glorious spare time, Ben's dad rented the movie Temple Grandin and we finally got to watch it.  I have read articles by Temple Grandin and watched her speeches on line, but I had not had the chance to see the movie until now.

I am not a professional movie reviewer, and my taste in movies is probably questionable at best, but you should really see it if you haven't.  You really, really should.

If you aren't familiar with Temple Grandin, she is a woman with Autism whose mother was told to institutionalize her when she was diagnosed at the age of four in the 1950's.  The doctor called it "infantile schizophrenia" (which really made me angry) and thought that children with it could never talk or take care of themselves or learn.  Her mother (played by Julia Ormond in the movie; Claire Danes plays Temple) refused to follow this advice, worked tirelessly with her on speech, manners, rules, and many other issues, and had Temple attend a boarding school and then college.  Temple is very successful; she has earned her PhD in animal science and is a professor at Colorado State and has famously redesigned slaughter houses to create safe, humane, environments for the animals that are also more efficient and has written many books about that and also about Autism, including The Way I See It.  She is an inspiration in herself, but this movie is really something.

I cannot get over how well it was done, and how thoughtfully she is portrayed, both as an awesomely successful woman and as a person with Autism.  It shows her social awkwardness, her differences from other people, the bullying and teasing she was subjected to for being a "freak," and the way other people couldn't understand her interests and focus, but it also showed how she thinks in pictures by presenting a series of photographs to represent that and it amplified different sounds to show what would be uncomfortable and frightening to her.  It showed her sensory issues, like the "hug machine" she designed and built for herself because she needed the pressure of a hug to calm herself but couldn't tolerate human touch, and also her inability to eat food with texture, other than that of yogurt and jello.

It also showed how much of a difference small gestures of kindness by others made to her life.

I spent a large part of the movie comparing her to Ben, for some reason, perhaps because I am constantly trying to understand the differences in symptoms and gauge Ben's.  There were a lot of differences because he is very high-functioning and she is more classically Autistic, but there were a great number of similarities, too: the intense focus and inability to be side tracked, the lack of understanding of social cues, and the need for pressure, which Ben satisfies with back rubs, a bean bag chair, or his weighted blanket.  But I absolutely began to cry during the scene of the movie where she leaned toward her mother without touching her so her mother could hug her.

Ben does this.  Not with me or his dad or his grandparents, but he definitely does it with people he doesn't know as well or see as often.  Ben has always been affectionate and loving, always, but with less familiar people, he is more guarded in many ways.  He also gives what we call "head kisses."  If you ask him for a kiss and you are not immediate family, he will most likely lean toward you with his head down so that you may kiss the top of his head.  He complies, but in a way that is comfortable for him.  I don't know why that scene made me cry, maybe because it was at the end of an emotional movie, or maybe because it reminded me so much of my sweet Ben, but it did make me cry.  The movie as a whole gave me a great deal of hope for Benjamin.

See the movie.  It's incredibly well done, Claire Danes does an outstanding job, and it is a very helpful tool for spreading some awareness that people with Autism are different, but definitely not less, than others.

Monday, June 20, 2011

The Long and the Short of It

Hi!  I haven't been here in awhile, despite my good intentions.  It's just that when school let out I lost my motivation.  I'm trying to find it, but I lack the motivation needed to do so. Ha ha.  Ha.  I see Canada and Russia have visited this little blog quite a bit.  Other countries too, but not as much as Canada and Russia, so hello there to them. 

You know how when you find out you are going to be a parent, you read all of those books about all of the things you should worry about when you try to raise your child?  And you know how those books tell you there are BILLIONS of things to worry about?  Like what might happen to your child's brain if you don't nurse them until they are old enough to tell you they would prefer a juice box, the two hundred kinds of harmful plastic that everything in the world is made with yet will give your child cancer if they use a sippy cup made with it, and the lead paint that used to be on your window sills but was scraped off twenty years ago?  Come to find out, they managed to leave out some things, like SHORT SLEEVE PHOBIA.

Sleeves, specifically short ones, caused quite a ruckus around here for quite awhile.  Ben was used to wearing long ones, so when the Panhandle weather decided to swing warm, he did not want to wear short ones AT ALL, and then just when I got him sort of used to the idea of short sleeves, the weather would swing back to cold and he would get to wear long ones again.  That may not seem like much of an issue, but trying to put a short-sleeved shirt on that child made him scream, cry, and wrench the shirt off of himself as if it had a prickly thorn lining.  And this didn't happen once or twice, but every day for about a month.

Last spring, we had one instance of not wanting short sleeves and then he got over it.  Last fall, we had a few mild instances of not wanting long sleeves and then he got over it.  I was completely unprepared for the battle that short sleeves turned into this spring, and also the emotional wretchedness that came along with it.

I knew this was because of the sensory issues that plague most children on the spectrum, and I knew that to Ben, the sleeves were scary and/or uncomfortable because they were different from what he had been wearing for several months.  I don't want my child to be alarmed, uncomfortable, or scared, but at the same time, I don't want him to get used to avoiding uncomfortable things completely.  Lots of things are going to be uncomfortable to him, and lots of new things are going to be scary, but I was faced with this quandary that parents of children with Autism end up in: give in or push the issue?

I kind of wanted to give in.  Maybe Ben could just always wear long sleeves, even though the temperature does hit over 100 here in June.  Maybe being too hot would make him want short sleeves.  Maybe giving into this one thing wouldn't set the stage for having to give into all things because he screamed and cried and didn't want to try them.

But they are just sleeves.  Not snakes, not sky diving, not asparagus.  Just sleeves.  My main goals for Ben are for him to grow up to be functional and happy, and giving up and letting him wear long sleeves when the weather clearly called for something else just didn't seem in step with helping him reach those goals.

His wonderful occupational therapist was a bit stumped by it as well.  She suggested we trim the sleeves of the shirts bit by bit to get him used to it, but I had an issue with chopping up perfectly good clothing.  I searched online and found nothing but either what the therapist had suggested or just ignoring it and letting him burn up in long sleeves in Texas.

So I did something else.  Something that I do not recommend trying at home.  Something that I hope came from my love for Ben and faith in his ability to adapt and not from some horrible motherishness on my part.

I hid all of the long-sleeved shirts and all of the long-sleeved jammies, announced that they were gone because the weather was warm now, and MADE HIM WEAR SHORT-SLEEVED PAJAMAS.  He screamed, cried, removed the T-shirt over and over, and I hugged him to me and rocked him in the recliner under his weighted blanket and just let him scream it out while desperately hoping I wasn't scarring him for life.

The next morning, he woke up all smiles, did not mention the horrid T-shirt his mean mother made him sleep in, and calmly picked out a short-sleeved polo shirt with a dinosaur on it to wear to school that day.   He now occasionally mentions wanting long sleeves when he gets dressed, and almost always asks for long-sleeved pajamas, but aside from tugging at the shirt a bit when he first puts it on he is fine.  He even wears sleeveless shirts on occasion.

Did I do the right thing?  I have no idea.  Would I recommend it to others?  Probably not.  But, as I am learning more and more, every child with Autism is different, has different issues, and needs different things.  I didn't know what to do, so I did what occurred me and it just happened to work out this time.  I am happy he gets dressed with minimal problems, but I am totally dreading the fall.  I did my best, and no matter what happens or comes up in the future, I will do my best for Ben, even if that means not knowing what to do and just having to feel my way through a situation.

Below is a series of pictures illustrating what occurs when I ask Ben to smile nicely for a picture to document the occasion of wearing a sleeveless shirt, or to document any occasion for that matter, simply because he thoroughly enjoys refusing to cooperate with me.  He's a mess, but I sure do love him.