Becoming a Team

Charlie is starting to give more commands to Sunny, walk her more when out and about, gaining that trust together and teaching Sunny to rely less and less on Tyler and I.  We are still right with them to help when needed, but this is a big step in their future together as a team.  Did you know that's what it's called?  When a person and their service dog are together it's called a team.  In our case, the team includes Charlie, Sunny &/ Tyler and myself. As he grows older and more capable of handling Sunny on his own, it will be the Charlie and Sunny team.

There are still times when Charlie just wants to run and play and not have to worry about Sunny.  Which is totally fine!  He needs to be a kid too.  But we're seeing him want to be in charge of Sunny more and more.  Every chance we get we ask Charlie if he wants to walk Sunny.  Or we'll get him involved if we're doing some training with Sunny.  And this is important because the more Sunny sees Charlie giving commands, the more she will realize that he's in charge.  As Charlie gets older and big enough to handle Sunny on his own, it's our goal that he will become the sole handler of Sunny.  She is his, after all.

Charlie is also starting to ask for Sunny more and more when he is having a hard time managing his emotions, feeling scared or having a hard time sleeping.  Until now it's usually Tyler or I noticing Charlie having a hard time and giving Sunny a command to help Charlie.  But lately, Charlie has been doing that more on his own and giving her the commands himself.  Charlie is realizing how much Sunny helps him and is reaching for her in his times of need.  

And seeing them together is always remarkable.  I cringe to think of where we'd be in life without Sunny.  She's made such a huge difference.  The bond they've already made is incredible.  We're excited to watch them grow together and see what they can conquer together. 

Autism Isn't a Phase

I know you don't completely understand.  I know you don't know anyone else with autism and therefore have a hard time grasping this.  One thing I need you to know, is autism isn't a phase. This isn't something that Charlie will "out grow."  Sure, he may learn to cope as he grows and have less intense symptoms of autism, but it will always be there. 

When you see him spinning, jumping, falling, climbing and having moments of daring feats full of no fear- that's not him being a fearless boy, that's Charlie sensory seeking, that's autism.  He often needs more sensory input than a typical person and thrives off of certain movements.  Many times theses things are calming to him. Don't chastise him for it.

When you see him stuck in his ways and not being flexible- that's not him being stubborn or difficult, that's called being rigid, that's autism.  Charlie has a hard time being flexible, especially when he gets an idea in his head or thinks something should go a certain way.  Sometimes it's even hard for us to take a different route when we are going somewhere in the truck.  We've endured many meltdowns on the way to the grocery store or church because we went a different route than we normally do.

When you see him getting upset because you're changing activities- that's not him having a tantrum because he doesn't want to stop what he's doing, transitions are hard, that's autism.  Sometimes even the smallest of transitions can be difficult.  We always have to give lots of reminders and warnings when we are about to change activities or do something new.  It's hard for Charlie to change tracks suddenly.  He needs time to process the change.  It makes spontaneity nearly impossible.

When you see him start to scream, yell, throw things, try to break things, or attempt to hurt himself- it's not him acting like a spoiled brat, it's not a tantrum.  That's what we call a meltdown.  Hold on to your shorts, because it's a million times worse than a toddler tantrum, that's autism.  Sometimes meltdowns can last 5 minutes or other times it can be over an hour.  It will all depend on how dysregulated he is and what triggered it.  Sometimes we don't even know what triggered it. 

When you see him deliberately walk away from you in public (he's also been known to run)- RUN AFTER HIM! He's not doing this because he saw something he wants to look at- he sometimes tries to get away from us, this is autism. He doesn't understand the dangers of running away. When we are out and about one of us always needs to have eyes on him or close enough to grab in an emergency.  He doesn't always respond to verbal redirection to stop or come back.

When you see him running and not paying attention (especially in a parking lot)- this is not him being careless, this is him not understanding danger, this is autism.  This is why we park backwards in the parking spot- to keep the door of the truck as a barrier between him and the road/parking lot.  This is why we always hang on to his hand or have him hang on to Sunny's vest so we can help him safely navigate a parking lot. 

When you see him leave most of the food on his plate- this isn't him not liking your cooking, this is...well, we're not sure what exactly this is; food aversions, sensory issues, a complication of not being able to eat much at one time due to having a Nissen in place.....either way, we know it's frustrating when he doesn't eat, but it's part of the struggle.  We are always working on this with him.

When you see him struggle to go to sleep at night- this isn't him trying to get away with staying up later, he has had sleep issues since he was an infant and it's pretty common for kiddos on the spectrum to have sleep issues, for whatever reason, this is autism.  Here's a tip: he loves to sleep with someone else.  We're not sure if it's the body heat from the other person that he likes or just the comfort of having someone close, but he sleeps better when he's with someone else.  Oh, and don't be surprised if he wakes up in the middle of the night.....it still happens sometimes and we have no idea why.  Sunny comes in handy when it comes to sleep.  She provides deep pressure for him to calm down and provides that warm body for reassurance.

If he's having a tough time riding in the vehicle and starting to have a meltdown- it's not because he's impatient, his tolerance for car rides is pretty minimal, that's autism.  Car rides are hard.  It's why we can't go on long road trips with him.  We would need to be very strategic on how long we were in the vehicle at one time, where we'd stop for breaks, activities to help him get sensory input in during the breaks, etc.  It's exhausting and frustrating, especially since Tyler and I have always liked traveling and exploring. 

Shall I go on?  Do you need more examples?  If you do, please ask.  We'd rather you be educated and informed than be clueless and insensitive.  You might need to adjust your expectations a little with him.  We're not saying you need to give in to every little thing, but be patient and know that the way you thought something might turn out with your time with him, might not be how it really goes.  That's our entire life....thinking it will go one way and then having it take a total 360 requiring us to change tactics. Know his limits. Don't discredit Sunny.  She's not just a dog to our family, she's a lifeline for Charlie, an aide.  She is his medical device that helps him function and find some calm in this crazy world. If you're not sure if an activity will be too much for him, ask us. We're always learning too, but for the most part we know what makes our boy tick.  Don't just brush these things off as him being difficult.  All of these things we described is autism.  And he's not going to grow out of it, it's not going away. 

A Letter To My First Born

Dear Easton,

First of all, I want you to know how unbelievably amazing you are.  You are the boy who made me a mom and I'm so grateful God chose you for me.  You are so incredibly kind, patient, inquisitive, smart- holy moly are you smart, and compassionate.  I've never seen such compassion in a person your age.

I can't even tell you the joy you bring to me and your dad.  But I know life hasn't been easy.  I'm sorry.  I know as you and your brothers have grown our family has had to take the road less traveled. The autism road.  And all the while you've just rolled with it.  So many times you've wanted to do something or go somewhere and we couldn't.  Those were times autism had us in it's grips or we were so utterly exhausted we couldn't fathom leaving the house.

There was so much we were trying to figure out in those early years.  Trying to figure out why your brother couldn't sleep through the night, why he wouldn't eat, why he screamed and cried for hours on end and so many other really hard things.  And I'll admit, while we tried to figure these things out, while we had to devote so much time and attention to your brother we sometimes didn't have the energy to give you the time you so much deserved.

I've always wondered how all of this will affect you.  Will all of what you've experienced make you angry?  Make you impatient? Will it make you bitter or hold a grudge?  I know I second guess myself every day.  Wondering if we're making the right decisions for you and your brothers.  Whether how we've handled certain situations was the right way.

But they way you deal with things have really opened my eyes, buddy.  Over the years I've seen you try to help your brother when he's in a severe meltdown, offering him items that might comfort him.  I've seen you talk to him with such sweetness when you're trying to help and guide him when he needs to be redirected.  And then something you did last week brought me to tears.

On the 4th of July we went to a parade.  We know parades can be stressful for your brother- the loud noises, the crowds of people- it's all overwhelming for him.  But we need to keep trying, for his sake and to keep normalcy for you and Christian.  Charlie was having a tough time from the beginning of the parade, but was keeping it together quite well.  He sat with dad and Sunny a few feet behind us in the shade.  I stayed with you and Christian on the curb to watch the parade go by.  And then the floats started throwing out candy.  The first big handful you brought back and you started putting several pieces of candy in a bag.  I quickly reminded you that wasn't your bag, it was Charlie's candy bag.  You looked at me as you put the remaining few pieces of candy in your own bag and said, "I know, I don't want him to miss out on the candy."

Sweet boy, you have no idea how proud I was in that moment.  You brought me to tears with your kindness and thoughtfulness. You could have easily put all of the candy in your bag, but instead you had your brother in mind.  And it wasn't only that instance.  You did it again and again over the next hour that we watched the parade.  That level of selflessness in an eight year old astounds me.  In that moment I learned that you care for your brother immensely.  You never saw me crying behind my sunglasses that day.  I wouldn't want you to think something was wrong.  But I can't help but think of all the ways you'll be there to help your brother as you both grow older.  Someone who cares for him no matter his age. I can see that in you and I'm grateful he has you.

I don't know if you'll ever read this.  If you don't, that's ok.  You don't need this letter to know how much you are loved and how much your dad and I cherish you.  Every day I catch a glimpse of the man you will become and I couldn't be more proud.  Reach for the stars, my love.

Love Always,
Mom