25. Temple Grandin

The other day Stormtrooper and I watched Temple Grandin.  I put it in our Netflix queue ages ago and it finally arrived.  I really didn't know what to expect from watching it, but I am glad I did.  It was somewhat painful at times because you really saw the pain and awkwardness that people with autism face.  As a parent of someone who has autism, this was particularly difficult because it makes you sad to think that this is what your kid is experiencing.

Temple didn't speak until she was four.  J didn't speak until he was three.  She ended up going to a boarding school because she got in trouble for hitting another child, but her mother, who seemed to be an advocate for Temple, said she never hit unless provoked.  This has been something that has been a worry for us.  We've often wondered what J would do if provoked by other kids and honestly the outcome could be disastrous.  I think I've spoken about it before, but J's view of reality is so different from actual reality that he could think he was in danger, but actually be fine.

Moving on in the movie, Temple goes to college.  She doesn't want to go, but her mother makes her.  And honestly, I make J do a lot of things he doesn't want to do, and I hope he'll be a better person for it later on in life.  There's a scene where Temple is upset because all the other girls have roommates, but hers hasn't arrived yet, so she has to be all alone in the dorm room.  She's very upset by this.  It was sad because these kids know they're not normal and while they're okay with it at times, other times they just want to be like everyone else.  She knows she's different, yet she wants a roommate.  All the other girls have roommates, why can't she?  I have to answer questions like this frequently with J and sometimes I don't even have an answer that's adequate.

Temple is awkward in class but obviously thrives because she is so smart.  I don't even think she realizes she is smart.  J has no idea he is intelligent.  He never studies, he half-asses his homework.  He doesn't even attempt to look at his spelling words.  And yet he has straight A's.  I think last year, his end-of-year averages, when you took each quarter and averaged those grades, his lowest was a 95 in Reading.  Hopefully this will continue to transfer the older he gets, but because he has no study skills and you can't teach him study skills right now, I have no idea what middle school and high school will bring.  Since he is so resistant to things that don't make sense in his mind, trying to talk to him about studying would be fruitless.  Why would he need to learn to study if he doesn't need to study?  One day he might, and I guess I'll end up dealing with this later.

There's a couple points in the movie where Temple has to really think outside of the box.  It's a pretty amazing feat to watch because autistic people are so literal and there's a scene where she changes cars, changes her new car's appearance, and changes her own appearance in order to gain access to a cattle farm because she's a woman and they don't allow women on their property.  (I should probably preface all this by saying this movie took place several decades ago.)  She is able to really think on a different level than neurotypical people which allowed her to design different and more efficient tools for the cattle/meat industry.  She also said something that was very significant to me.  She said that nature is already cruel and we kill animals to eat, but there's no reason why we have to be cruel to them.  There's no reason why they can't die in peace.  And I think that is very important.  It shows respect to all living things and shows respect to those giving their lives for us, especially because these animals give their lives to us unwillingly, so it would be nice for them to be able to have a decent life and a decent death.  So she incorporated that ideal in a slaughterhouse design that kept cattle calm and allowed them to die with some dignity still intact.

We watched that movie and thought, we hope for these things with J.  We hope he's able to accomplish something greater.  He is so smart and while he is oftentimes the most self-centered person I know, he has a lot of kindness in him that allows him to really shine and stand out.  He always has ideas of things he wants to do when he grows older and some are realistic and others are not.  He doesn't understand that he has autism yet.  He knows he has it because we tell him, but he doesn't really understand what it means yet.  Temple was able to grow to a place where she could advocate for herself.  I want the same for J.

Maybe this is all like a glimmer of hope, a glimpse of what life perhaps could be for J.  I want the best for him, as all parents do for their children, but sometimes in our dark days with meltdowns and tantrums it's hard to imagine that he would ever conquer those things enough to be self-sufficient and highly educated.  Maybe he will surprise us all.

12. Why Can't We Be Friends?

At nine years old, J hasn't fully realized how different he is, but he is beginning to.  He will tell you he has an autism disorder, even though I don't think he knows quite what that means.  His therapist asked him to name some things he wanted most.  First was a higher grade in Reading, which is currently his lowest subject average at a 92 (he struggles with figuring out what characters are feeling or what motivates them).  A pet to call his own (we've discussed maybe allowing him a fish one day since that is the lowest maintenance pet we can think of).  And more playdates.

J plays a lot with my nieces, who are eight, six, and three years old.  And seventeen, but she doesn't so much play as oversees.  Over the years, I've tried to get playdates together.  When we lived in the city and J went to a different public school, I would have birthday parties and invite all the boys in class.  Usually about half came, which was lovely and made J feel really good.  One year, one boy said he would come, but never showed up.  His father called and asked if we could get the boys together on a playdate the next weekend because his son ended up being sick the day of the party.  So we made plans, and they never showed up.  So his father then made another excuse, we rescheduled again, but again, he didn't show up.  After two no-shows, I stopped telling J about playdates.  It happened again with another parent, who completely flaked out on a playdate with J.  This time she had the decency to tell me that J "cut-up too much in class" for her to be comfortable to allow her son to be around J.  Amazing how J's behavior was considered "cutting up."  It makes me wonder what that mother thinks of kids who have behavioral problems as opposed to developmental problems.

So playdates have been a difficult thing.  Since I don't make J wear a sign on his forehead that says I have Autism Spectrum Disorder, I don't think it's obvious to all parents there is something wrong.  Or they probably know something is wrong or different, but they don't know what.  And people don't want their own children around someone who is weird.  J can be very different from the other kids.

So much of our behavioral therapies focus on how to change J's behaviors, to help him cope and to prevent tantrums.  Right now, he will not walk on the wooden floor of the entryway, instead he will walk around the perimeter and take extra-long strides to get to the stairs without touching the wood.  Why?  I don't know.  It's fascinating to watch him, though.  It's his most obvious OCD-type behavior; he takes the same route every time. But it's one of those quirky things that make other kids weary to become friends with J.

I don't want the therapies to change the essence of who J is.  He was not born to be society's definition of normal.  I want him to be able to cope and adjust himself so he can be happy and calm.  I know sometimes when he is forced to change a part of him that he is not ready to change, he will seize up and become extremely agitated.  Sometimes this happens when I try to discuss social issues with him.  He doesn't understand jokes or sarcasm, which was very obvious yesterday when I told him a joke.  

What's the longest word in the dictionary?

Smile!  Because there's a Mile after the S.

J blinked and looked lost.  "I don't get it."  I tried to explain that it was a joke and why it was a joke, but he didn't understand.  He kept telling me it didn't make sense because smile only has five letters.  He said, "This is real life and in real life, 'smile' only has five letters."  I finally gave up and tried to change the subject, but J was very upset that he didn't understand.  The problem with this is, when it comes to friends, he does not understand other kids his age.  They tell each other jokes or are sarcastic, but because he cannot differentiate, he gets on the other kids' nerves.  When they're joking, he thinks they're serious, and when they're serious, he thinks they're joking.  This has created some tension between him and the other kids, and sometimes led to J getting into trouble when he doesn't know when to stop playing around and another kid will get upset/annoyed/frustrated/etc.

The social aspect of J's disorder affects the way he interacts with adults, too.  He rarely speaks to them, and in fact, will just ignore them unless prompted to say hello.  Once he is comfortable, he can often get focused on a single topic and can not deter from it.  Today, while we waited for the school bus, he started talking about Minecraft and some new "textures" he got (what that means, I really have no idea), and the bus came and he didn't stop talking about it.  Continuously before I had to usher him onto the bus.  This happens frequently.  But when you're an adult who has no idea about J, it can come across as rude and off-putting.  

Luckily, J has one good friend at school, a girl who has a disorder similar to J, so they get along very well.  They're also extremely likeminded, but where J talks too little to adults, she talks too much, so they compliment each other.  He's very happy to have her as friend, but because she's a girl, sometimes the other kids make fun of him (them).  A couple times, J has grown overly upset with the other kids because he can't tell when they're joking or when they're mean.  And from what it sounds like, it's a mixture of both.  I've told him that maybe they're just jealous that they don't have friends who are girls, but he doesn't understand why anyone would be jealous of having a girl friend (or a girlfriend should you choose to close the gap between girl and friend).

I used to fear for the day when J would realize he doesn't have any friends, but recently I joined a parent-support group for parents with kids with high-functioning autism/Aspergers and similar pervasive developmental disorders.  At the same time we have the support group, there is a group for the kids, divided up by age group.  J gets to learn about social skills and appropriate communication in a fun environment.  And the last fifteen minutes of group, he gets to play on the playground with his new friends.  These kids have the same disorder as J, but that doesn't make their friendships any less real.  What's amazing for me is that my fear that he won't have any friends when he hits his teenager years may become nonexistent.  I think if he continues with regular school, he won't have a lot, if any friends, but that's all right, so long as he is happy with the friends he does have.  And hopefully he will be able to make a lot of new friends with the kids he's meeting now through group.

J is beginning to realize he is different.  He worked on idioms for a few weeks in his speech class and when he finally had a breakthrough in understanding what they were, he was so proud of himself.  He came home and started spouting off the idioms he learned and what they actually meant.  A couch potato isn't an actual potato, did you know that?  Yes, I did know that.  How come other kids understand things like idioms, but I can't?  I have no idea, no idea at all.  (Although, I suspect none of the other third graders have any idea what the hell an idiom is anyway, but they certain know what a couch potato is.)  One day that how-come-the-other-kids-understand-things-but-I-don't question could turn into why-don't-the-other-kids-like-me?  At that point, I probably will have run out of answers.

Sometimes I wonder what kind of kid J would be if he didn't have autism.  Would he be as kind-hearted?  Would he have tantrums or meltdowns?  Would he be more interested in sports than art?  Could he actually dribble a basketball or throw a football?  Would he want to dribble a basketball or throw a football?  Would he have friends?  I think we all assume that if our kids are normal it must mean they will have friends, but that isn't necessarily true.  There are those kids out there who don't have any pervasive disorders and yet still don't have many, if any, friends.  So if J was normal, would he have any friends?  Would he be popular?  Or would he sit by himself on the bus?

I do have my moments where I wish J didn't have autism.  The times usually come when he is having some sort of meltdown or tantrum, or he has decided to ignore everything and everyone around him, no matter how many times you call out his name.  I am not ashamed to admit that I have wondered what life would be like with a "normal" child.  I think some of my fears would be different, but fundamentally they would all be centered around the same thing: having my son grow up to be a happy, healthy person.  I think it's what Stormtrooper and I want for all our children.  Still, if J was normal, how would his friendships be?  We wouldn't have his club that we go to every other week and the friends he is making there.  He wouldn't have his current BFF from school either, because if he didn't have ASD, he might not be in a position to relate to her, and thus, not even be friends with her.

Autism minds are really quite amazing.  J is a great academic student, a fantastic artist, and can really do things with a lot of precision and perfection when he wants to.  His mind runs on a different wavelength, a frequency that no one else can really tune in to.  It makes friendships and socialization difficult, but I can only aim to surround J with people who will affect him positively and help shape and form him into the person he is supposed to be.

9. Simple Dreams in Complex Times

Today I took J to therapy.  He goes to therapy the next town over, in the middle of an affluent neighborhood.  The town has two sets of roads, one for cars and one for golf carts.  Roads where teenagers and stay-at-home-mom's take to do all their errands and socializing without having to go over 35 miles per hour or drive through traffic on the main highways.  It makes for a great maze of walkways for Tiny and me while J does his therapy.

My stroller has an auxiliary port, so I plug in my phone, turn on Pandora, and listen to music while walking down the path.  We pass a couple of golf carts, but mostly it's quiet.  Even Tiny stays quiet as he looks around at the sky and trees.  It's far enough away from any main roads to be very quiet, just a few leaves rustling, squirrels jumping from tree branch to tree branch, and the water from the stream moving quickly south.  Just as my music turns from Silversun Pickups to Pentatonix, my phone mysteriously shut off.  I had 50% battery and my phone isn't known for being quirky, but I can't get it to turn back on.  So it leaves me without any noise and nothing to sing to.  I like listening to music on walks like this because it allows me time where I don't have to think about anything.

We get to the end of this small bridge-like walkway and I stop.  There is such simple complexity to nature and I take a moment to appreciate it.  Looking at the woods makes me think of simpler times, not just in my life, but in the lifetimes before, when things weren't so overwhelmed by being on time, driving to here and there, planning and scheduling and looking at calendars, working to make money to pay bills and watching it all get spent away.  The times when people didn't have bank accounts, when they traded goods and there was cohesion in towns and communities.  A barn burned and everyone helped to raise it back up. 

Our lives get so focused on so many outside forces that we can't allow ourselves the time to look at the simple complexities in life.  I spend so much time trying to help J conform to a normalcy that he is not fully capable of and forget to appreciate his idiosyncrasies.

I read a lot of dystopian society books, futuristic where our futures are bleak.  What's appealing for me in a lot of them, our society reverts back to a simpler time, simple like these woods.  In these literary futures, we work the land, we contribute our strengths to the whole.  My husband and I watch The Walking Dead, and as complicated as surviving an apocalypse is, their time is simpler as well.  When the survivors had their community, they worked together - they had jobs hunting, growing food, teaching, cooking.  Contribution to a greater good, a larger whole.  In the latest episode, one of the characters killed another one because this girl was so far outside the social norm that she posed a legitimate danger to them.  That world is black-and-white.

The world we live in is full of various shades of gray, so where does that place someone like J?  How do I help him figure out where he belongs in a society that doesn't fully accept those who are different?  How will he figure out how to contribute, how to appropriately give and take?  And more importantly, if what he decides he wants to do for a job is so far out of his reach, who will be the one to tell him no?

Today, if you asked J what he wants to be, he will tell you a veterinarian.  And why?  Because he loves animals.  Today, he would be unable to put an animal to sleep.  Today, he would be unable to talk to an owner, tell them the truth, and be civil and kind enough in his tone for them to come back to see him with their pets.  He has trouble enough connecting with others and working in a group.  He doesn't realize it now, but it's not just about the animals, it's about their owners, and his co-workers, and a workplace cohesiveness that, today, he would be unable to achieve.  Of course, this is today; I have no idea what the future will bring.  What I do know is that I have the unique job to help gear him towards something that he can do.  

I believe in pushing him, testing his limits, and finding out exactly what he is capable of.  He has ASD, but that doesn't limit everything, yet it does limit some things.  As he grows older, we'll be able to watch him and see what he may end up being capable of, the contributions he will be able to make, so now we just smile and tell him being a vet is a great job, a job that takes a person with a special kind of heart to do.  When he's ready to enter college and graduate school (assuming we're able to get him that far), do we allow him to choose a path that we know he will struggle with or one he just will not be able to do?  Do we cheer him on and help him fly?  Or do we bring him back to the ground and tell him to choose something else, tell him he cannot do what he wants to do?  Would I be the bad guy for watching him fail, or the bad guy for not even allowing him to the chance to try?

I can liken this down to something smaller.  A few weeks ago, J asked me to help him learn how to play basketball.  I played when I was younger, and I know how to dribble and shoot.  I know the rules.  We played in the cul-de-sac in front of our house.  He was pretty terrible.  He is uncoordinated and clumsy, but we both had fun.  We've practiced a few times and I've helped him to refocus him.  He doesn't have to be the best dribbler or shooter, those are not his strong suits and he knows that.  We worked on picks, passing, and blocking.  Those are easier moves, ones he can actually do.  He'll never be good enough to be on a school basketball team, but if he wanted to try out, would I tell him no?  Or let the coach tell him no?  I could be the bad guy and save him the heartbreak and humiliation, or I could allow the coach be the bad guy for not having him make the cut.  Except if the coach says no, I would still feel like the bad guy for allowing him to go out there completely unable to play.  It's a concept I struggle with on many different levels because it's so multifaceted.

All parents play the game of when-my-son-grows-up-he's-going-to-be-a... a anything.  We play these games and insert jobs and careers that will earn our children enough money to take care of us in our old age, because don't we deserve it after raising them?  After at least two decades of birthing them, feeding them, clothing, sheltering, teaching them?  Of loving them, watching them, worrying and hoping and dreaming?  That game isn't so much fun when you realize that your son can't be a anything.  A something, a few particular things, but the world is not at his feet.  

Perhaps his uniqueness could find a happy place in a black and white world.  Perhaps he could hone and contribute the few gifts he is good at, and contribute them significantly.  Unfortunately, in our world of gray lines, there isn't a place for him.  Yet.  

Helping him pursue a dream that I am not sure is attainable is a premature thought since he is only nine years old now, but it's also a recurring one.  For now, I'll walk back to the building where J has his therapy and enter back into the real world.  I'll leave the woods and my thoughts for next week when I'll come back to the peace and complex simplicity again.

Images are from the Southern Conservation Trust.