Awareness vs. Acceptance

As Autism Awareness day approaches, I have seen many arguments that we should call it "Autism Acceptance Day" instead.  In fact, many people in the autism community question whether we should be searching for a cure at all or just seeking acceptance.  Many of the people that feel this way are adult autistics who are happy with their lives.  As with so many other controversial discussions everyone feels like it should be all or nothing.  Personally I say both.

For those that think we should just accept them, quirks and all, I say that is wonderful.  If you are truly happy with how your life is, then by all means keep leading it.

But let's consider the other side for a moment.

Do you think that the 10 year old who is not potty trained because of all her sensory issues is happy with that?  Should she just be accepted as she is?

Do you think that 16 year old who cannot talk is thrilled that his only form of communication is his iPad?  Should we just accept that as his only means of communication and stop trying to teach him to talk?

Do you think that 20 year old who still requires his mom to shave him daily is getting everything he wants out of life?

Is that kindergartener who lashes out regularly at anyone and everyone ever going to be accepted by neurotypical kids?  Should he be?  If a neurotypical child was taking a swing at your son or daughter would that be accepted?

Maybe some of these adult autistics are thrilled with their life as it is now, but if they had a child would they wish these hardships on him or her?  I think not.

These are my primary reasons for wanting a cure.  If Alan would learn to communicate his wants and needs with an iPad I would be extremely happy.  But if there was a way to eliminate his autism, I would be ecstatic!!!  Unlike a lot of people, I don't think he is the wonderful, funny (not so little) guy that he is because of his autism, I think he is the wonderful person he is in spite of his autism.

If he truly thinks in pictures like the great Temple Grandin then I would be terribly sorry for him to have to give that up, but if he were able to speak, not have so many required rituals and could understand other people's emotions at least as well as many of my engineer friends, well I think that would be a fair trade off.

Is my reasoning selfish?  Perhaps.  But aren't most parents selfish when it comes to their children?  Don't most people want their children to have more than they had?  Don't most parents want their children to be intelligent, attractive and have wonderful personalities?  Does it mean I don't love Alan that I want more for him?  I don't think so.

Even Joe who has so much going for him, struggles with some things that I would love to be able to eliminate.  As an avid reader, it pains me that Joe cannot just sit down and lose himself in a book.  If he could actually make and keep real friends how could that not enhance his life?  I truly do not believe that if a cure were found for whatever is incorrectly wired in his brain that he would lose the essence of what makes him Joe.  I believe he would be more -- not just different and certainly not less than he already is.

So while I accept the adult autistics who just want to be accepted I still want a cure for my boys because I think so much more is possible!

Do ya feel lucky?

When I was younger, my mom used to always call me her "good luck charm".  I did seem to win an inordinate amount of random drawings.

On our honeymoon, DH and I went to Bahamas which is a big gambling place.  We both came very quickly to the twin conclusions that we were not particularly lucky and we really hated losing our hard earned money in a game of chance.

When our first baby was born, people were still throwing around numbers like 1 in 10,000 for autism so our knowledge of autism was next to nil.  Of course to add insult to injury, Rain Man had only come out a few years earlier so what knowledge we had was skewed as well.

Of course by the time Joe was diagnosed they were using numbers like 1 in 5000 but still I had several people assure me that it didn't run in families.  If I knew then what I know now, I would probably have stopped there and I also think I would have been a better mother.

I was reading Stuart Duncan yesterday and while I normally love his blog, yesterday's post just grated on me.  In Don't fear autism and certainly do not fear your own child he says basically that parents are not having children because they fear autism.  He says we should instead reassure prospective parents.

Reassure them that they most babies are born healthy?  I think they know this.  I think if anyone is not having a child because they are afraid their child would have autism, they are simply not the gambling type.

In the case of subsequent children once one is diagnosed, personally I think this a good thing.  When you are at a high risk for something you should be allowed to consider whether that risk is personally worth it. 

When this generation of autistic children reaches adulthood, they will put a hell of an additional strain on the economy since most of them will not be functioning members of society.  If the 1 in 50 number is truly accurate, then at least 1 child in 50 will also need to have a career that focuses on the care of autistic adults.  That just boggles the mind.

Yes it is very possible (98% possible) that you will have a neurotypical child.  But a 2% risk to forever alter your life requires very careful consideration.

Could you be a good parent to a special needs child? 

Maybe these prospective parents know they are too selfish to give up their whole lifestyle forever if their child is severe.  Maybe mom and dad are both very into their careers and know that they could not make all the meetings that would be required.  Maybe they are struggling financially and have heard how costly it is to have a child with special needs.  Maybe their marriage is already rocky and the idea of raising a special needs child single-handed is daunting.

That is a choice.  Maybe they are just not gamblers.

An unusual solution

This weekend I was reading a Facebook post about the difficulties involved with trimming your ASD child's fingernails or toenails and I had to laugh.  This was always a HUGE deal with Alan.  We tried everything.  Bribing him with Skittles, warning him, springing it on him as a surprise, sitting on him, doing it when he was asleep ... you name it.  It was always hideous.

About 4 years ago, Alan came up with his own solution to the matter.  OK, it wasn't pretty, it wasn't hygienic, but it was funny!  It also drove his brother crazy.  We sort of figured it for a temporary solution.  After all, while a 10 year old might be able to chew his toenails, not too many adults are capable of the same <ahem> "feat".


Little did we know that he would still be doing it all these years later.  OK, maybe chewing his toes at the kitchen table is more than a bit gross, but it is still functional.

Joe always leaves the room when he sees Alan start this.  Of course, Joe thinks nothing of trimming his own fingernails wherever and whenever it occurs to him.  "But I had a hangnail!" 

Maybe the boys can open their own nail salon.  After all, people pay lots of money for those fish that chew off your dead skin.  Maybe Alan will be in demand the same way. 

Mischief mode

By the time Spring Break is over for the boys, I will probably weigh 300 pounds.

 
I'm a "stress" eater.  I've always known this.  When I am blissfully happy, I forget to eat.  For some unknown reason <sarcasm font> I haven't done that in years. 

This week is especially tough because all Alan wants to do is go out to eat lunch -- and we all know that fast food is sooooooooo good for you.

 
Meanwhile, Alan no longer likes to go to the zoo or the park or anything remotely like this.  So after taking him out to lunch, he climbs and gets into mischief and I eat.  And it is only Wednesday. 

DH was hoping to take a few days off work to help me out but he is having problems and vacation isn't a great thing at the moment.  We are still hopeful that will change tomorrow or Friday.

We had to get rid of all our home workout equipment because Alan liked to climb on it (that is a bit hard on an elliptical or a weight machine) and so I don't have any easy way to work out here at home.

I had some faint hopes before Spring Break that I could race up to the gym and do a fast workout and leave Joe in charge of Alan but unfortunately for that plan, Alan has been in mischief mode this week.

Alan knows what he is allowed to do outside.  Really, I think we are pretty darn lenient about that but we do draw a few lines.

We do not allow him to climb on the neighbors' swing set.  While he is unlikely to fall, 160 lb kid could easily break something.  And, if he does fall and hurts himself, I am sure they would come up with some way to sue us for that.

We also do not allow him to climb over our deck rails.  We have reinforced all the rails but still don't think that is a good thing.  We also don't allow him to climb the siding of our house.  And yes, he has tried to do all of these things especially when he gets in mischief mode.

He is actually sort of entertaining to watch when he gets into mischief mode.  He goes outside and looks over his shoulder to see if I am watching.  When he sees that I am, he happily walks over to the tree or the swing-set and climbs and plays.  Then he casually glances over his shoulder and studies the sliding glass door and any of the windows in which he has seen me watching him.  If he doesn't spot me he scampers off to one of the places he knows he's not allowed to climb and starts climbing.

Yesterday was a fairly pleasant day so I figured I would take my book and read outside while he climbed.  That worked for awhile and then I went inside and as soon as I went away from the windows to do something mundane like laundry or dishes, he struck!  I came back to find him hanging on the railing from the outside of our deck.  Grrrrrrrrr

After a time out, he wanted to go outside again so I followed him out with my trusty book.  I got a deck chair set up and ... he decided to go back inside.  I put away the deck chair and followed him and ... he decided to go back outside so I followed him and then he gave up and decided to play inside for a little while.  Thank goodness for small favors. 

Of course, being inside makes it easier for me to eat.  There is always a downside.

Spotlighting Joe's creativity

Whenever Joe approaches a major life change (new school year, holidays, even vacation) he gets a little "edgier".  Needless to say with high school graduation approaching he has been a getting on my nerves a bit!  So in an effort to boost his morale and mine, I am going to spend this blog highlighting his creativity -- which is extensive.

I talked in Dorothy, I'm afraid we aren't in Kansas about Joe's amazing marionette he constructed out of pipe cleaners. Kerri commented about how creative it was and I figured I should give credit where it is due.  His marionette, which he calls Marionetto, took only a day or two to construct although he has tweaked it occasionally since.  He even trusted the cat to check it out but not Alan ... hmm, he might have something there.  The cat is probably more gentle than Alan!


He has also carved his own pumpkin for the last two years and while 2011's was probably better than 2012's they were both pretty impressive for a kid with fine motor issues!

The drawing in the book

Working hard!

Joe's final drawing.  A little off on the face, but otherwise, pretty well done!

But one of my all time favorites was his copy of a drawing from the book The Invention of Hugo Cabret.  He loved the movie Hugo when it came out and since reading has always been hard for him, we got him the book for his birthday hoping it would spark his interest.  He actually did a little reading on his own, but as is usual for Joe, the pictures were what really captured him!

Again, this didn't take him very long.  He did this drawing in an evening.  When he wants to, he can be incredibly focused and a very hard worker.

Now if we can only figure out a career for him that involves copying pictures from books or building pipe cleaner puppets, life will be good!

Dorothy, I'm afraid we aren't in Kansas ...

Joe created a four foot tall puppet constructed out of pipe cleaners last fall.  It is actually a fairly cool work of art and craftmanship.  It is a (mostly) functioning marionette and he is extremely proud of it.  Which is fine.  He should be.

Unfortunately, his special ed teacher suggested he bring the puppet into school to show his classmates.  There is no way to get this thing into school easily.  Joe flat refuses to fold it or bend it in any fashion.  We tried to explain to him as gently as we could that it was possible that some of the other kids might make fun of it.

"Why would they do that?"

"Well, generally kids by the time they are 18 are in to more grown up forms of entertainment than puppets." 

"Well that is silly.  Puppets are cool."

Whatever.  This is the kid that came out of school one day in his sophomore or junior year with an ivy wreath on his head ("it's a crown!")  I give up.  I guess I need to pray for gusty wind every day from now until the end of the year or for kind high school students.  Which is more likely?

The legal system makes me want to break laws

We had the fun experience this week of Joe's guardianship hearing.  We were only seeking a limited guardianship instead of a full guardianship.  We really just wanted control of his medical decisions and to be informed of his financial information.

You would think getting limited control would be easier than full control, but apparently that is not the case.  The first struggle came when the judge read the doctor's affidavit.  His wording was "too restrictive" because it did not spell out that Joe could drive.  Huh?  The kid could legally drive before he was 18 but if we tried to get a guardianship he couldn't drive anymore unless the doctor specifically gave his consent.  Could someone please explain that one to me??

When I called up the doctor to explain the confusion he confessed he had never done a limited guardianship.  Seriously?  Shouldn't those be more common?

When all was said and done, I felt like breaking a few laws myself.  I wonder how guardianship works if the guardian is in prison?  Best not find out.  Deep breath, Julie.

Helicopter Parenting

We've all seen them and read about them -- the dreaded "helicopter parents" who cannot help but hover around their children.  They intervene in the smallest crisis and try to direct everything from their child's teachers, to their child's friends, to their child's activities. 

As a parent of a special needs child, I feel guilty of this even when I loathe this type of behavior.  I know I jump in too often when I am with Joe and someone is talking to him in a way that I know is too laden with generalities or idioms.  I tell myself I am merely being a translator and yet isn't the best way to learn a foreign language to go to a place where that is the only language spoken and be forced to communicate? Nonetheless, it is almost impossible for me to sit by when someone asks him a question that I know he just doesn't get and I feel like a simple rewording will make it all go smoother.

Jumping in to translate when it is family, a store clerk or even a doctor is one thing but one issue that I am forever stressing about is Joe's driving.  What happens if he has an accident or gets pulled over by a police officer and they don't communicate in a way that Joe understands?

Joe drives himself to and from school every day.  The first time he drove away from the house (to go to the grocery store) I sat next to the phone until he returned.  I still have not been able to jump into the shower or put myself completely out of reach of a phone when I know he will be driving.  Is that helicopter parenting or just being careful?

Joe is a good driver.  I know he will never text and drive -- heck, he won't even answer his cell phone when it rings in the car -- because that is the rule.  He doesn't take a drink from his soda unless he is at a stop light.  He doesn't speed.  In fact, if he has a failing while driving it is that he is too cautious.  It is a bit like riding in the car with a little old lady instead of a teenaged boy!

At the same time, he is a new driver.  This morning was the first time he drove alone under really snowy circumstances.  He has driven on snow with me in the car but as anyone who has driven in snow can attest, things can happen fast.  Joe's biggest failing is that he likes to plan.  You cannot always plan what will happen when you drive.  If you could there wouldn't be accidents!

So this morning I asked him to text me when he got to school to let me know he got there safely.  This is the first time that I have asked this of him. 

His response?  "I will if I remember."  Painful honesty from an autistic teenager!

Of course, this is actually completely typical as I have been reminded repeatedly by my mother that I did something similar to her.  When I was 17, I had a part time job at a local discount store and naturally had a shift when it was snowing.  My mother asked me to please call her when I got to work.  "Oh sure, Mom, no problem!"

Naturally, being a teenager, I got there fine (we are invincible when we are teenagers or so we believe) and forgot all about reassuring my mother.  So she called and talked to one of my co-workers and then chewed me out when I got home.

DH and I were exchanging e-mails this morning while Joe was driving and we were wondering if I had made the right call.  Helicopter parenting?  Perhaps.  Although a true helicopter would have insisted on riding in the car while her child drove or perhaps followed him.

After 35 minutes (when it normally takes me 15-20 minutes to drive to school), I finally got a text.  "I made it with some slipping." 

So this turned out to be a good learning experience for both of us.  I didn't hover and he had the opportunity to drive in slightly tricky circumstances without assistance from mom or dad.  Sometimes that balance is as tricky as a slippery road for a new driver ....