Thursday, October 30, 2014

The Temple Grandin Movie - Why I Loved It and I Hated It.

Recently there was some discussion about Temple Grandin on Jonathan Mitchell's Facebook page. It made me think about the mixed feelings I had about the movie. Here they are:

I loved the Temple Grandin movie for the same reasons most of us did. It is a wonderful story.  Claire Danes is a superb actor and she was fabulous in this role.    The story outlined the frustrations and obstacles of autism brilliantly!  The inspiration to people and families struggling with autism was a breath of fresh air! That is why I loved it.

I started to hate it when I heard the take-away from people who know almost nothing about autism apart from this movie.  Last year we went to a family dinner party and we brought Naomi.  As usual we explained her condition to those that didn’t know her.   Later of in the evening one of the other guests asked “Autism, is that the condition that they were portraying in that movie with Claire Danes? “  When I told her that it was she continued.  “That movie really made a point for me.  I mean, we’re all different; we’ve all got things that are a little odd about us!  That doesn’t mean we need a cure for them.”   This was a little surprising since this same person seemed to cringe a little when Naomi moved around, trying to grab other people’s hands at this event.  Maybe she just didn’t like children in general, but I sensed she was less than fully approving of this little oddity in particular.  After hearing her refer to autism as if it were a simple ‘quirk’ I wanted to ask her if she noticed that she had eaten dinner, started dessert and was on her second glass of wine before I had even had a chance to take my first bite of anything.  That’s the life of an autism mom.  Something the Temple Grandin movie left out.  

Aside from how her condition affects me, there’s Naomi to consider.  Autism really isn’t a simple ‘quirk’ for her.  Maybe she isn’t entirely comfortable with how autism will affect her life.  The movie clearly indicated that Temple Grandin has never been interested in any kind of romantic relationship.  Most people are - autistic or not-  and yes, autism gets in the way of that.  Independent living – or lack there of, effective communication and major barriers to obtaining things that she may want in life aren’t just little ‘quirks’.  No matter how accepting the environment around her is, autism will affect her quality of life.

When I try to talk about  Naomi's future, sometimes people will say “Look at Temple Grandin!” The tone isn’t “Look at Temple Grandin!  What an inspiration!”  It’s more along the lines of “If she can do it, why can’t your kid? Stop worrying about her and get on with life!” 

I hear these things and I wonder if parents of children with polio were told not to worry, because hey, look at Franklin Roosevelt?   Somehow, I doubt it.  Somehow people got that polio was a serious epidemic and not just a quirky thing.   I wish that people would get that when it came to autism. 

The movie only briefly showed Temple as a child with her mother using flashcards as Temple sat passively.  Then suddenly, Temple is a young adult, working on her aunt’s farm, engineering a gate that let cars through and keep the cattle in.  She’s even getting ready for college in the fall.  I know there must have been a lot more blood, sweat and tears in those years between.  It’s too bad we didn’t get too much insight into them.

Then there’s the squeeze machine.  Yes, the squeeze machine worked wonderfully for Temple and I am happy that she made it work.  It doesn’t mention that since autism affects so many people in so many different ways, the squeeze machine isn’t the answer for everyone with autism.  To have the insight, the skills,  the communication abilities and the intellect to figure out what your sensory needs are and build something to address them is much more difficult and far rarer than it appears on a movie screen.  For people with autism, many of the sensory and emotional conditions are much further outside of their control then most of us can ever imagine. 

I still loved it.  I truly think she is an inspiration and role model.  I think everyone, including people with autism should strive to use their  gifts and work hard to make accomplishments.  It’s just that the difficulties that come with autism don’t go away by treating everyone like Temple Grandin.  The world of autism is so much bigger than this, or any movie can encompass. I guess it’s like dismissing racism by pointing to Barak Obama or figuring that we don’t need to help people on welfare by pointing to JK Rowling. It is far more complex world out there.   So yes, Temple Grandin does not need a cure.  Many others do.


Saturday, October 25, 2014

Puberty Just Shouldn't Start So Young

With Naomi's recent passage into puberty at 9, it made me think of a story I heard on NPR a few months ago.  It was about the increasing number of girls that are going through puberty at younger and younger ages.  The piece was titled Puberty Is Coming Earlier, But That Doesn't Mean Sex Ed Is. Children as young as 6 were interviewed as they discussed how they noticed the changes in their bodies and how they and their families responded.  Puberty at 6?  This was all discussed kind of matter-of-factly without an expression of alarm or concern. The only problem the story seemed to indicate was that sex education, which covers puberty, doesn’t start until 5th or 6th grade.   Too late for many girls in this generation.  So the answer, it seems is to start sex ed. sooner.  Maybe around kindergarten would be good.  A pediatric endocrinologist is interviewed in the piece and she discusses the importance of early sex education.  She adds that there may be something in the environment that is causing this change (Gee, ya think?)  but the girls don’t necessarily have a medical problem.
How long do we have to keep out collective heads up our asses before we say “There must be something going on in the environment for so many girls to be starting puberty so early and we need to do something about it!”  Looking at hormone disruptors, in our plastics, our food and our chemicals may be a no-brainer place to start.  You don’t have to be a scientist for this to make sense.  But no! We can’t ask the developers of modern convenience to take any heat.  That might hurt their feelings.   We’ll leave it to social services!  Earlier sex education! That’s the answer.  And when we find out that early puberty may result in some serious health complications later in life? (Yes, there is evidence that that puts a person at greater risk for breast cancer.)  We’ll cross that bridge when we get to it! In the meantime, let’s just educate young people that “being physically mature doesn't mean they're ready for adult relationships.”  (This was the pediatric endocrinologist’s advice. )  Is it pessimistic of me to think giving children these words of wisdom, isn’t going to help much?   At least they are not saying “We don’t know if girls are really going through puberty earlier or if the system is taking note of it more.”   I guess I can be grateful for that.

Saturday, October 18, 2014

Dog Poop

"Touch Spotz butt.  Touch it! Touch it! Go... touch!  Dog poop!  Touch the poop.  Spotz!  Stop pooping! Eat the poop. "  We hear these phrases with loads of giggles multiple times a day.  It all started with our stay in Georgia last spring.  We went to the local playground and there was a piece of dog poop some irresponsible dog owner had left on the mulch.  Ever since then it has been the phrase she has said when there is nothing else to say "Dog poop."

When we got the dog in May the obsession actually decreased for awhile, but then it picked up.
"This is?" pointing to the dog's anus.
'I'm not going to answer.' I think to myself
"This is? This is?  THIS IS???"
After relentless questioning  I finally decide to answer. "His butt.".
"Touch Spotz butt!"  She says and giggles like crazy.
She will get down on the floor just to get a good view of his anatomy.  Unfortunately, his tail is always upright, giving her full view. 
Yes, I know that she does this to get a rise out of us.  We've tried the extinction thing.  Ignoring, ignoring, ignoring.  But in the end, she finds the idea so entertaining that it doesn't matter how we react.  Just saying it to herself makes her giggle like crazy. 
We've scolded her, we've threatened to send Spotz away.  The latter response sometimes gets her to stop temporarily, but she's at it again a little later. I'm not sure what to make of this.  One part of me says "Toilet and anatomy humor is something we all have laughed at at some point in our lives, especially when when we are kids and heck, the dog doesn't seem to mind." But I also worry about limits of this fascination. If she thinks it's funny to stare at and talk about touching the dog's butt, is she going to think it's funny when it comes to another person?  No, that hasn't happened, but recognizing appropriate limitations has never been her strength.  Maybe now's, the time to make it clear that this behavior will not be tolerated. But how do we make it clear?  Punish her severely?  That may make her recognize that we don't like it, but what will it really teach her?  I wish I could sit her down and explain that it would NEVER be okay for someone to look at or touch her that way, and it is NEVER okay to do that to another person.  I wish I could  tell her that although looking at a dog like that is different than looking at a person like that, it's still rude and shouldn't be done.
Last Friday was a teacher work day.   I took Naomi out and the days was filled with "Dog poop" and "Spotz butt" and loads of giggles.  Toward the end of the day she got quiet and serious and I worried. "Naomi are you okay?"
"You're okay." She would seriously mutter.  She continued to stay still and serious.  I worry at these times because I know from past experience that still and serious usually mean that she's ruminating about something.  This is a signal that her mood is changing.  What follows up.... Well, it's just not pretty.  I actually considered distracting her by asking about 'Spotz butt.' 
This was when my concern changed.  At first, I was worried about how 'appropriate' her fascination with "Spotz butt"  and "Spotz poop" were and how that thinking may carry over, but now as I watched her verge of a dark mood, I would gladly welcome some toilet humor.  My concern over 'appropriateness' seemed small and insignificant.
This situation made me consider how much time Naomi has to spend just thinking to herself.   People who can't carry on a conversation, follow a story on TV or  read a book spend a lot of time with their own thoughts.  For anyone this is challenging.  A recent study showed that most people find it hard just be alone and think for just a few minutes.  In fact, many people in the study preferred to give themselves electric shocks rather than than just be alone in their heads.  How much time, every day, do I expect Naomi to be alone in her head?  Even though we go out into the world much of the time, she still is expected to keep herself entertained by her own thoughts a great deal.  It's inevitable and it's tough.  So with this in mind, I've changed my position on endless jabbering about "Spotz butt" and "Spotz poop."  If it amuses her, keeps her happy and bridges the time between one activity and the next, then it's okay with me.  Sure, people in the grocery store will give us strange looks and I still will look out for any similar fascinations with human anatomy, but like so many things we worry about, it may not ever even happen. Think about whatever keeps you happy, girl!

Wednesday, October 8, 2014

There are Some Positive Aspects to Autism Parenting

I’ve been a bit of a Debbie Downer when it comes to autism lately.  I need to think of some of the positives.  I often read posts from parents claiming that if there were a pill that could immediately cure autism in their child without side effects, they would not have their child take it. I don't think I could ever find that much positive in autism.  I would beg, borrow, steal and  maim to get that proverbial little pill.  In any case, that pill doesn’t exist at the present time, and although I wish it did, there are some things that I can be grateful for when it comes to this autism parenting thing.   The things I am about to list here are simply things that I can be grateful for when it comes to autism as it presents in Naomi, these are not necessarily great things about autism parenting in general. 

The Autism Scholarship  -  We live in Ohio where we can opt out of the public school system and use the autism scholarship for Naomi’s education.  I am very grateful for this, and I am aware that many families do not have the options offered for school choice.   I wrote about the scholarship here.

Common Core Standards -  I don’t really know anything about Common Core Standards other than what I hear on NPR and a few other random sources, but I know I wouldn’t  like them.  Thanks to autism and the autism scholarship, I don’t have to deal with them at all.  Naomi’s education is completely divorced from Common Core. Yeah!

Homework   I hear parents of neurotypical children speak of huge amounts of homework every night.   With the homework comes the struggle to get it done and the anxiety of the kids who spend their of time doing it.   We get very little homework and thus have less of the stress that goes with it. 

Sometimes Lack of Awareness is a Good Thing  -  Last Christmas, with winter holidays upon us and not enough plans to keep Naomi entertained, we took a last minute trip to Orlando, where we got a screamingly fabulous deal on a vacation rental.  We didn’t have the money set aside for the kind of Orlando vacation that other people were taking.  We didn’t go to any amusement parks or attractions.  We spent day after day at the pool and in local restaurants and we had a good time.  Naomi sat in our living room watching the demonstration of all the rides and attractions at Disney World on TV  and had  no expectations.   I think if she knew about all the expensive and elaborate parks that were in Orlando, it would have been a much more difficult vacation.  Her lack of awareness saved us the whining and pleading, the guilt and the stress that knowing about Orlando’s diversions would have caused.
I am also grateful for Naomi’s lack of awareness when I witness the unkindness of other children.  I have left the playground in tears far more often than Naomi has, because I am aware of the nasty comments and sniggering.  What Naomi doesn’t notice, doesn’t hurt her and for that, I am often grateful.

I don’t have to listen to endless jabbering.   I would love for Naomi to be able to converse and use language to her advantage for various reasons.  However, since she cannot converse or speak fluently, I’ll acknowledge that neurotypical kids have a reputation for endlessly talking to a degree that make their parents go cross-eyed.  Talkers also can get rude and nasty, especially in their adolescent years.    Although, it is a price I would gladly pay to have Naomi  effectively communicate, I’ll acknowledge that there are advantages!

I can buy things on the cheap! Most of Naomi’s clothes and toys have come from second hand stores.  She doesn’t care if things are new or not.  She doesn’t care about designer labels nor impressing others with her possessions.  This helps with our budget.  I can’t say for sure that this characteristic is due to her autism, but I kind of think it is.

I get to avoid some of the things I don’t want to do.  Since all of our extended family is out of town we are often called upon to travel for visits, weddings, funerals and other events.  Usually, I don't care to make the trip.  'I'm sorry, but it's just so difficult traveling with an autistic child.'  It's true that it's difficult, but it also fits my agenda.  Autism just may help me shirk of the guilt or the obligation I would otherwise feel for failing to participate in certain activities.  I've got enough on my hands; find someone else!

No cellphone for my pre-teen.  If you haven’t seen the clip from Louie CK talking to Conan O’Brien about why he doesn’t let his kid have a cell phone, you should.  You can see it here.  After seeing that clip I was more convinced than ever that kids shouldn't have cell phones.   Nevertheless, I am a real softie and I would have a hard time resisting the pleas and the pressure from my kid to buy her a cell phone when all of her peers have one.  Naomi, however, doesn’t have the slightest interest in owning a cell phone and therefore,  I don’t have to worry about that fight. Do I think she would want a cellphone if she were not autistic?  Um, yeah!

Naomi gets more excited about things than other kids.  When we took Naomi to a Laurie Berkner concert I looked around at the audience and there was no doubt that she was the most excited person in the room. Skipping, smiling and wildly stimming, she was glowing with excitement.    That was a great pay off for our efforts getting there.  I saw so many passive, bored faces of neurotypical kids and I realized that sometimes, I don’t want her to contain her excitement. Let it shine, girl!

I don’t have to deal with friends of hers that I don’t like.  Almost every parent has to tolerate their kid’s friends and those kids can fray nerves, cause commotion and be frighteningly mischievous.   Yes, I would like for Naomi to have friends, but I can be grateful that I don’t have to worry about some other kid bringing over porn, blowing up the basement or acting in a way that puts me in a conundrum.   As she gets older I probably won’t have to worry about sex or illicit drugs from influencing friends and I don’t have to worry about perverts trying to lure her over the internet.  As an autism mom, I’ll have access to everything.

Sometimes things are simpler when we do them her way.  I remember one Christmas morning repeatedly saying “Naomi, look in your stocking! Naomi, open your present!  Naomi you’re not finished opening your presents yet!”  When she finally heeded my instructions, she was not excited and happy, but pretty neutral about these rituals.  So now, we don’t do them.  You know what?  I hate Christmas shopping.  I don’t do it and Naomi doesn’t mind in the slightest.   – She loves Christmas and Santa and the decorations; she just would rather I go to the store and buy her something than make her wait for a present to be opened Christmas morning.  We don’t do Easter egg hunts.  Naomi doesn’t care for them and she doesn’t need more junk food!  We did a Birthday party one year.  I’m not sure if she was aware that the event was for her.  Now, she’s content with the celebration they do for her at school.  We bring in a cake and we're done!  Yes, I would like to see Naomi enjoy these things, but we have our own family rituals – like traveling out of town to see Laurie Berkner – that make up for them.   In pulling out of some of these events, I get to save myself the prep work and the hassle.   I’m all in favor of that! 

So there are some positives! I’m still hoping that someday that proverbial little pill will come out on the market.  Until it does, I’m remembering  that there are some things for which I can be grateful.

Thursday, October 2, 2014

As She Grows Up

Naomi must have grown 3 feet this past year!"  One of the camp counselors tells me.
"Yes, I know.  I need to put her on a 'stop growing' medication."
 She's 5 feet tall, 86 pounds, and wears a size 8 shoe.  Much greater measurements than you see in a typical 9 year old.  This isn't a post about "my little baby growing up much too fast." Although I can relate to that sentiment.  This is about autism as the people who have it get older. Where is their place in the world?  It's something I really didn't think much about in the first few years following her diagnosis.  Everyone said it gets better after all, so I figured we'd cross that bridge when we came to it.
Naomi has made progress over the years, but  the behavior that was acceptable or even 'cute'
as a child is not so easily accepted now.  For example Naomi has an impulse to smell little girls hair.  It's basically harmless; the curiosity and discovery of a child in toddler years, but now other people see it as a little creepy.  She follows little girls around and imitates their activities.  Yes, in the past there have been looks and comments that made it clear that she was in the way and not welcome, but's seen as more than a little unusual.  As she grows up I worry about how it will be interpreted.    Anytime older people are interested in little girls, people assume the worst.  It can't be easily addressed by telling her to change her behavior.  She doesn't have the perspective to understand why anyone would be bothered by it and her actions are very impulsive.   There are other innocent behaviors that people find unsettling to see in a teenager or adult.    In a child, people are expected to me more understanding; unusual behavior from teens and adults is perceived as being unsafe.
 I also worry because Naomi is constantly on the go.  She is completely unwilling to stay at home for a day or even a significant part of the day. So I wonder "What kind of activities are we going to do as she grows out of the things she does now?"
She is growing out of the playground equipment, she's not allowed on the kiddie rides at amusement parks and I wonder how much longer she can keep going to bounce houses.  I spoke to another autism mom about this the last time we were at a bounce house and she said. "We won't be able to take them out as much when they are older.  We'll have to find more things for them to do at home." This  does not seem like a reasonable option for me.  More than a few hours at home makes Naomi anxious, restless and very difficult to live with. I also worry about my own energy.  This non-stop, on-the-go pace of life has taken it's toll on me in the past few years.  I'm okay with it now, but I wonder "How long can I keep this up?""What are we going to do to replace all this running around?"  Even now I'm always looking for more things we can do and places we can go that will keep Naomi entertained and also be safe and appropriate.
I had come to accept that I couldn't mainstream her into dance classes or sports, or even leave her in regular day care.  I learned that I would have to be a helicopter mom that followed her around and guided all her actions.  But now we're at another threshold and I'm worried.   The activities she is cognitively suited for are not suited for people her size. She does not have the awareness and behavior to match the activities for people that are her age.  Staying at home is not an option and even if it were, I don't believe she should have to stay home just because she is tall and unusual.   Still, the future is coming upon us and I don't know where we are headed.

Before I let my thinking get ahead of me, I have to remember to take it one day at a time.  The truth is that we've been pretty lucky about finding places to go and things to do until now.  I just want that lucky streak to remain with us. We'll get through the adolescent and adult years as they come always looking out for other possible options as we move into the future. And if there is one good thing about a growing autism population, it is that we probably won't have to do it alone.