Autism: No Cure Please

Autism is personal.  Don’t for a minute think it is not.  It’s not like cancer.  Cancer invades the body and can be hated and managed with well known drugs and a defined path of treatment.  Autism can barely be defined much less managed and treated with any kind of defined path.  Doctors will throw darts at the symptoms and some will offer therapies that are likely not covered by insurance but a path to cure will not be part of any autism I have known. 

The word Autism is confining. 

I am happy they at least added the spectrum.  What happens on your spectrum, because everyone’s navigation is different, is up to you.  Whether you crawl and moan upon your spectrum or you stand up tall and dance out loud, it’s a personal choice. It really is all up to you.  The spectrum is personal.  Never doubt that.

Autism is a gray area that, even upon diagnosis, has yet to be defined.  As I tend to often repeat, it is fluid, ever changing and mysterious.  It will surprise you if you let it, it will rock your world and knock your socks off in moments.  It will also test you, beat you up and you will rise up to the challenge it poses even in the moments when it is beating you down.  Good parents always do, whether it is planned and conscious or not.  Great parents will go forward with new therapies they believe will help and will say no to the quackery.  It is a defining moment as a parent to be invited to step up to autism. 

Parents of children with special needs can change over time.  Over time they become warriors.  After they finish their moments of grieving or adjusting to what autism is, they stop whining, stop complaining and giving into their wishbone.  They start growing that backbone and they stand upright and fight for their child.  If it hasn’t happened to you yet…just wait because it will. Unless, of course, you are blessed with one of those school districts who are forward thinking and understand autism.  The districts where they do not make you fight.  Where children are given what they need and expectations are set high just because it is the right thing to do.  Bless you if you have that school district and bless them for making your spectrum dance one jive, hoppin, rockin’ place to be. 

Loving autism never seemed like a path I would take.  Avoiding, anger, denial and hopelessness might have been a more apt prediction of my feelings in the early days.  Marveling, laughing and being thankful for a son on the spectrum did not seem likely when he was diagnosed at 2.  I might have thought you were out of your mind for even suggesting anything remotely possible.  Autism is an affliction, a handicap, a way to lose a child might have been what I thought way back then.  Autism, once upon a time, was a death sentence.

            Thankfully times change and thankfully we are able to change with them. 

There are days when the light shines bright and God’s sense of humor soaks into me.  When I see more than just the “A” word.  When my son’s voice shares with me what his spectrum goggles see and I too, in that moment, can see the brilliance that radiates from him.  I love those moments; would trade nothing in this world for them.  I would trade nothing for that cure you search for.  I would not change him.  His radiance would be lost in your cure.

I would not cure his autism. 

I like to leave every hair in place, just like it is.  I would leave each cell in his brain intact, functioning just as he was wired on the day he was born.  The only thing I want to do is enhance his dance, build to his strengths and let him grow more and more into who he is supposed to be.  NOT into who the guidebook says he is supposed to be; like every other child.  I cringe to think of what my life would have been like had I not been blessed with his radiance, his vivacious and unpredictable nature.  I honestly cannot imagine what my life would look like if he had not danced into my life with his iridescent glow.  I am thankful, beyond these simple words, for the iridescent boy he is and the blessing he has brought to my life.

He is perfect. 

He is beautiful. 

He is spontaneous. 

He is not like anyone I have ever met. 

He is challenging. 

His  imperfection is perfect. 

He is the reason I am who I am. 

A Ropeless Lynching

Was Trayvon lynched?
No, you're right, no rope was used.  And, you're right again, no mob was employed but I would say, for Emmit and Trayvon along with many others, it was a lynching just the same.
Trayon is not the first but, today, as we stand wanting to forget the black mark that slavery, fear and racism have left up on our country (at our own hand I have to add) how much better are we today?  And, the question has to also be asked...who is next?  Does the fear the shooter felt envelop anyone who is different?
Black boys get killed in the United States.  It's a quiet part of our history. We cannot back pedal and pretend it does not happen because, let me just say, it is irrefutable.  It is a fact.  We have been doing it for centuries at least.  It is not a well advertised part of who we are as Americans but it is a true part of who we have become.
We can trace it.
We can document it.
We can face it.
Trayvon Martin is not the first.  And, as apparent and appalling as it may be, he will not be the last.  Names like Hezekiah Dee, Charles Eddie Moore, Emmit Till, and James Chaney all came before Trayvon.  And, let's be honest...these are just the headline names I am giving you.  There are more.  There are certainly more.  There are bodies that have yet to be uncovered to this day.  And though they were all killed by different methods, they were all essentially lynched.
There are many definitions of lynching.  Surprisingly, there is even a definition, for legal purposes, for "second-degree" lynching.  I advise you against traveling over to Wikipedia to look up "lynching" because the pictures to document the word are hard to handle.  But, then again, it is our history.  Perhaps everyone should see the pictures just so you can remember who we have been so we do our best not to travel back to that darkness.
For me, I believe the word "lynch" is defined too narrowly.  Yes, when you hang someone in a tree with a mob that is a true definition of the word.  But, for me, I would also lift up the idea that Hezekia Dee and Charles Eddie Moore were lynched.  Let's call it a "ropeless lynching".  Simply because when you tie two young men to a Jeep engine block and throw them into the Mississippi River when they are still alive, well, in my book that is just as much of a lynching as a man tied and hanging from a tree.  And, I would also venture to say that a young boy of 14, Emmit Till, who flirted with a white woman was also lynched.  After his flirtation, young Emmit was taken to a barn, beaten and his eye gouged out in the process.  He was then shot in the head and tied to a cotton gin fan and thrown into the Tallahatchie River.  I call this a ropeless lynching.  I am okay with forgoing the rope to relax the definition because in all these cases, the intention and result are the same.  Fear and hatred precede a violent and premature death for these black men.
And, I would go so far as to say, with a gun in the hand of a stranger and a hoodie on the boy's head, young Trayvon was also lynched.  Fear and hatred led to his premature death.  Though no rope was present and no paper documenting the premeditation, he was certainly lynched.  Perhaps the premeditation was created through years of pervasive racism?  I am not familiar with the shooter but I am concerned as a mom of two boys who rather consistently wear hoodies with the hoods up to warm their ears.  And, I wonder, with my autistic son being verbally impaired, would he be mistaken for a dangerous young man with his hoodie up and the inability to communicate clearly?
There is a lot to think about, discuss and to wonder about.  It is a tragedy for all involved.  I am sorry for Trayvon's mother that her son's name will be a headline name from today forward instead of being just another mother's source of joy and love.  I am sorry that he has to be a lesson for the rest of us rather than a young man unfolding his life to his family.

The Faces in the Village :)

          There are mean people in the village. 
          It surprises me as much as anyone mainly because, after forty years, I don't understand mean people.  I often wonder why mean people exist.  I will freely admit I don't have answers to those questions.  Mean people, especially mean girls, are just crazy mean people.  The unfortunate lesson I've learned is that mean people come in all shapes and sizes, well dressed and not, young and old, as well as high and low money.  Mean people are everywhere.  I used to think it was an isolated high school girl thing but, as an adult, I am finding it doesn't end.  Mean people, for the most part, just keep on stirring up the meanness and the nice people keep on blooming with kindness.  It just is, for whatever reason and I have no idea what makes mean people mean or why they continue.  I have decided there must be something they get out of it though I have not figured out what that is.
          Thankfully, as I discovered this weekend, the happy faces in the village out number the mean ones.
          I took my kids to see Rio on Friday.  It was a great little movie for the whole family (if you have to see animated movies still, it is good wholesome stuff).  And, no, the mean people did not show up and ruin the movie.  This post is actually about the kind villagers who make the world a better place.
          On the drive over to the movies, on an overpass, I saw a man who had gotten off his bicycle and was standing on the sidewalk.  It obviously caught our attention because he was just standing there.  Keep in mind he was not a fancy bicyclist.  No neon colors, no fancy bike, no skin tight lycra short or a shirt with company sponsors covering the chest and sleeves.  He was just a later middle aged guy with a belly wearing a faded yellow shirt, no names on it, and respectably baggy shorts. 
          He was just your average guy. 
          What made him so noticable (besides standing on the overpass) was that he was kicking at the ground.  It took us just a second, we were driving so we had to look quickly, to notice what he was kicking at.
          It was glass.  He was kicking the glass off the sidewalk to clear the path. 
          What I loved was that he cared enough to stop.  In my mind, he was doing his part to keep his village safe for the other bicyclists, the kids walking, the moms with stroller that would get jammed with glass in the wheels and the dogs on walks with their village friends.  I loved that man because he took the time to stop his bike ride and take care of the village.  And it helped me to see that the happy villagers outnumber the mean villagers.  The mean villagers, for some unknown reason, will go on being mean but, thankfully, we have a whole lot of good meaning, happy villagers that will always bring light to the good and help us to forget the others who for, whatever reason, choose meanness. 
          I love my happy, kind hearted, thoughtful villagers and I am thankful the happy villagers stand up and let themselves be seen.  I certainly need to be reminded on occasion :).
           

Lego Crisis...

I have to say I learned something new today.

It's not that we have never lost a crucial Lego piece before...because we have.  Lots of times in fact.  Today though, my oldest son tells me he is missing a piece from the Mindstorm robot we are building.  My question for him is HOW COULD THIS HAVE HAPPENED????  He added insult to injury when he informed me he'd been chewing on it.  It's not that he swallowed it...he just took it on a walk in his mouth and lost track of it in the house.  He thought he might have left it in his brother's room but his brother assured him it was NOT there.

Apparently it was MIA.

We set up a Mindstorm Work Zone to avoid just such a mishap.  We cleaned, we organized, we planned, we made sure we were prepared BEFORE anything was touched.  Yes, still...here we are.  Unable to proceed because of one eensy weensy little round circle with a funny edge has come up missing.

Utterly irreplaceable.

So today I did the thing I have never done before.  I broke down and called Lego ready to plead, bargain or pay for what I have lost.  I admitted to the kind and bubbly girl in customer service who answered the phone that we are missing a crucial piece.  I then admitted my further guilt that we probably misplaced it.  I thought she would verbally slap my wrist and chastise me a bit for our irresponsibility.  Surprisingly, she was all sweetness and light.  She admitted that pieces sometimes drift away, escape or grow legs.  She understood the crisis that us Lego friendly parents live with...the pieces unexplainably disappear.  And even though I am sure the piece still lives somewhere in our home, after sending the whole family on a scavenger hunt, it is not apparent where it might be hiding.

So, without any lecture and with such giggles and kindness in her voice...she took my address and promised to send it out right away.  She even took my other son's name down so she could make sure he gets his own Lego magazine :).  I thanked her from the bottom of my heart, over and over.

I do love Lego.  It is amazing what good customer service can feel like.  They are my hero today!  And, because of them, Alpha Rex will soon come to life....after a short rest while we wait for the mailman/lady to visit our mailbox.
Whew...crisis averted!!  Happy mom...Happy boys.

Thoughts and questions about behavior challenges on the spectrum...

This may not be popular.  I will preface my writing so that you know in advance that I am not looking for a fight.  I am not one of those people.  I already have three kidlets, a labrador and a labor intensive bearded dragon to take care of.  I don't have a lot of energy to waste and I just wanted to get that straight from the get go.  I try to preserve as much of my energy as I can, LOL!

With that said, I have had a few conversations this week regarding challenging behaviors, tantrums, obsessive tendencies, compulsive routines that AS kids are experiencing.  I have been navigating the spectrum for eleven years which does not make me an expert but it doesn't leave me a novice either and I have been confused by the response I have seen in other families.  Whenever my son began to demonstrate compulsive patterns of behavior, routines that he was becoming confined to, I would come up with a routine that ran counter to his preferred routing.  If he wanted to throw a fit because he thought we should ALWAYS turn right out of our driveway and I turned left, I would make sure I then turned left every day for a week to get him out of that pattern... or to help him to not obsess so much about turning right.  If he wanted to go through an obsessive routine about lining up stuffed animals before bed in certain positions, I would throw them out of position or start a stuffed animal war with him that ran counter to the obsessive routine...or I would subtly begin hiding a few so the line up would have to change.  I have never catered to the obsessive or compulsive tendencies and I think he is better because of it.

This week I have run into two friends, parents of children on the spectrum, who regularly cater to the routines...and I'm not talking about an established night time or morning routine, or a routine to help get organized and pack up for school in the morning.  These routines (ONLY two pieces of bacon on his plate...one will set him off into a full melt down as will three or four) have become debilitating for the child and the family and I'm confused as to why they are allowed to continue.  Do we cater to the routine to avoid upsetting the child or avoiding the fight?  I am not sure what the motivation, I have just been surprised.

To me, the routines seem to be detrimental but that is only my opinion.  Perhaps there is something I am missing...some value won by allowing them to continue?

I will say, my son is in regular education, full time with no pull out or resource time and we do not live our lives around any hard and fast compulsions.  And, truly, I am not sure if that is because I never tolerated them and always changed up the routine to run counter to their existence or if my son was just wired differently. 
No answers here....just philosophy in practice I guess. 
If you have any thoughts, I'd love to hear them :).

Lego Mindstorm....the adventure begins!

Our adventure begins...
Today we have opened the box.
Our Lego Mindstorm arrived weeks ago but today is the day when our behavior has EARNED this reward.  It is also nice that it coincides with spring break. That will help mom out a lot.

My oldest son was seven when he got his first real lego.  It was a bit of an accident.  He received Sponge Bob's Bikini Bottom for his birthday and, to mom's big shock (because she thought it too complex), he put it all together in one sitting....with no help from anyone.

I was a little surprised to say the least.

We became a Lego king after that and he went on to put together every lego we could find.  We mastered 200 piece lego sets in a variety of themes from Sponge Bob to Indiana Jones to Star Wars and Toy Story.  We then went on to six hundred piece sets and even the 1170 piece Star Wars Republic Cruiser.  He puts them together in a matter of a few hours and without even getting up from the table.   He also does it alone, with no assistance from anyone.

He is the master.

So, in mom's infinite wisdom, I have moved us to the next level of challenge.  I have bought the Mindstorm.  We have decided to build Alpha Rex....Wish us luck!

Cinnamon Bread Pudding

Cinnamon Bread Pudding

One loaf of cinnamon bread from the bakery...this kind of loaf is usually a little smaller.

1 1/2 cups sugar
3 eggs
1 stick butter
2 cups milk
2 tsp vanilla

Place slices of cinnamon bread in layers in 9x13 glass baking dish. Melt the butter. Mix together sugar, eggs, butter, milk and vanilla and pour over top of bread. Sprinkle top with extra cinnamon if you like ;).
Bake at 350 degrees for twenty minutes. It won't be done at twenty minutes but keep checking every ten minutes after that. when it is browning (but it will still be jiggly), take it out of the oven. Do NOT turn the oven off :).

1 stick of butter
1 cup of sugar
2 eggs
2 tsp vanilla and a dash of almond extract if you like ( I did)

Now melt ANOTHER stick of butter and add it to the 1 cup of sugar, 2 eggs, and vanilla/almond extract. Pour this over the pudding and put BACK into oven. Bake for an additional twenty or thirty minutes or so. Just keep an eye on it and make sure the liquid is soaking in. It will still be a little jiggly but should not be tooooo jiggly when you take it out.
Let cool and bit and ENJOY.