Monday, April 25, 2016

Stop!


C got a new nerf water gun today.  Being an excited 9 year old, he did what any 9 year old boy with or without autism does.  He took it a few houses down the street to show his friends.  I could write an entire post about my wonderment at his ability to walk down the street and back and all of the work that went into making that a reality for him, but that isn’t what this particular blog is about. 

Instead, it is about the fact that after he left, I started to think about a child who was shot by the police because he was carrying a toy gun in a park.  I wondered if I was worried about C carrying the watergun around, but then I soon realized that I wasn’t concerned over the neon orange water blaster.  What I was really forcing myself to think about was the scenario of what C would do if he were stopped by the police for any reason. 

I can see the squad car with flashing lights, maybe the sirens are still on, and the police officer is telling C to stop for some reason or another.  I then see one of three things happening.  C tries to walk to the police officer thinking that he or she is like the officer who comes every month to check his Project Lifesaver bracelet, and it is viewed as an aggressive movement.  Or maybe C immediately drops to the ground in the turtle huddle that he does when the world has become too overwhelming, and the behavior is viewed as an uncooperative movement.  Or maybe C takes off running because he is absolutely terrified of “mad” voices, and he is suddenly viewed as fleeing.  None of these scenarios end well in my mind.  If I’m honest, I can imagine the phone call or the knock on the door where someone is telling me one of my worst nightmares has come true.  I could go on because the details are that vivid in my mind, but that really isn’t what this blog is about.

I need to be really, really clear here—this blog isn’t about the police either.  They don’t know my giggle monster or how beautiful his soul is.  They don’t know he has autism or sensory issues.  They just see a tall kid who could be a danger or a threat, and he isn’t listening to what they are telling him to do. 

This is about my realization that we as parents can’t take for granted that C knows how to interact with the police in a dangerous situation any more than he knew how to ask a question or express an emotion.  Those interactions all require an ability to read and quickly interpret verbal and nonverbal cues in a fast moving environment.  Realistically, that isn’t a skill that naturally comes to a literal thinker.  And if we are really going to do our jobs as parents trying to prepare C for the world, then we need to teach him how to react in those situations.

When the older kids were younger, we played the stop game.  Initially, we played the game with Ry when we were going hiking in the mountains when bears had the potential to be active.  Later we played the game before going to the Badlands where we knew there would be a lot of poisonous snakes and we needed to know that the kids could respond to a frantic NO or STOP if necessary.  I think we’ll do something similar and maybe we’ll even ask a few of our local police officers if they will practice the game with us. 

I’m haunted by the images that my mind created for me tonight, and I’m sure I will revisit those images and that mental knock on the door for days, weeks, even months to come.  I also wonder what else we are forgetting to teach him about the world, and I worry that we don’t have enough time to fully prepare him for everything he will face in life.  I wonder who will be there to think of these things when we are gone.  I wonder if the world will change its definition of normal enough that these concerns won’t even be an issue in another decade or two.  I wonder….I wonder so, so, so many more things than I can possibly articulate.


Of course maybe all the wonderings is my brain’s way of reminding me that we can’t make assumptions; we can’t assume skills or behaviors any more than we could when C was younger. Autism is growing up with him and the challenges don’t stop.  They just change, and it is our job to prepare him to the best of our ability.  I don’t even know if our efforts will be successful or if somehow we will inadvertently create a new phobia or fear of the police that we will have to overcome, but I also know that we can’t do nothing because the images, the sounds, the feelings in my heart and brain are too raw…too real…too painful to just ignore.  

Saturday, April 9, 2016

Dear Elf


Dear Elf,

Happy Belated Birthday!

I don’t think it was a coincidence that you were born during autism awareness month.  If there was ever a blue-eyed boy with autism who desperately needed a friend to help him learn the ropes of the world, it was Caden.  Before we met you, leaving the house was hard—like really, really hard. Open spaces were overwhelming for Caden, and he usually resorted to flight in places such as parking lots or fields.  I lost count of the number of close calls that we had in parking lots.  When we did go out, we tried to keep him in his stroller at cheerleading competitions for his sister because the crowd sizes were so overwhelming for him.  The mall?  Well, that certainly wasn’t even a consideration.  Friends were nonexistent and transitions were a nightmare.  We won’t even mention sleep because it just wasn’t a thing in our household.

Then you came into our lives.  You wiggled and wagged and exuded so much energy that morning we first met you that I had a moment (and I’m embarrassed to say this now) where I wondered how in the world you were going to possibly offer any kind of calm or stability to our boy.  Our first night together at the hotel, though, you went into the bathroom to watch his bath and never hesitated to jump on his bed when he laid down.  And from the moment we drove home after 4 Paws graduation (and he threw up all over you---sorry about that) you two have been together.    
  
You have so kindly accepted all of our cats (even the ones who like to bathe you) and every dog we have brought into the house no matter how ill-mannered or undignified they act (seriously the puppy will one day mature…I think).  When your boy is doing well, you have provided much needed love for Caden’s sister and you have helped our youngest work his way through adoption trauma.  You haven’t hesitated to try to help a stranger in need in the doctor’s office, the school, or where ever you are and are needed.  And sometimes late at night before you retire to Caden’s room, you spend some time and kisses making sure that we are okay too.


You’ve been a pillow, an Ipad holder, a stuffed toy fetcher, a blanket, and a best friend.  You’ve helped Caden explore the world with you safely by his side, and when he’s wandered (that toy store incident was totally my fault because I misread your “get a clue lady, the kid is leaving” message for a “hey I’m a dog and gotta go potty message”..sorry about that) you have safely located him no matter the weather, the location, or the circumstances. 

Without a question you know everything you were trained to do and you do all of your tasks well.  I’m grateful for your ability to disrupt behaviors, ease transitions, provide sensory input, tether, and track.  And if that’s all you ever did, I would forever be thankful for you.  But you are so, so, so much more than that to Caden.  You are his best friend—you are the one who is with him in the middle of the night and he has a bad dream or first thing in the morning when he wakes up and is still disoriented from sleep.  You’ve walked into hospitals and educational settings when we couldn’t go with him.  You have loved him unconditionally and for that I will be eternally grateful for you. 
To be honest, I don’t much like thinking about your birthday because it means you are getting a year older.  But no matter how painful our final parting will be someday, I will never regret our decision to bring you into Caden’s life. 

If I could give you one thing on your birthday it would be for you to know that we love you to the extent and depth that you love our boy.  And that’s pretty much all the way to the moon and back.  Thank you for helping us write Caden’s tale.


Love,

Caden's mommy

Saturday, April 2, 2016

April: The Candles and Colors of Autism

Last night I lit a candle* to remind myself and others that "children with ASD are eight times more likely to elope** between the age of 7 and 10 than their typically-developing siblings. 48% of children with ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings.***" Last night I lit a candle to remember those individuals who lost their lives in 2015 due to autism related elopement and the devastated families they left behind. 




 
Tonight I will light a candle to remind myself and others that one 2015 study found that "autistic adults with a learning disability are 40 times more likely to die prematurely from a neurological condition such as epilepsy."  I will light a candle to constantly remind myself and others that the same 2015 study articulated that suicide is now the leading cause of early adults in autism who do not have a learning disability."




Tomorrow I will light a candle to remind myself and others that individuals with autism die every year as a result of malpractice or outright murder. The news stories often forget to focus on the autistic individual who has lost their life. 



Light a candle or chose a color to shine but at the end of the day make sure you have taken the time to start a conversation about autism.  I promise you that someone somewhere--maybe a teen struggling to be themselves, maybe a parent trying to do the best that they can, or maybe a teacher desperate to reach a student that they have been told doesn't have a future--needs to hear your story about yesterday, today, and tomorrow


*Learn more about Jill Smo's candlight vigil event on Facebook
**Elopement (ICD-9-CM V40.31) wandering (aka Flight Risk)
***NAA Autism & Safety Facts
IAN research on Wandering and Autism
Project Lifesaver