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

Sunny

Sunny is usually mentioned and seen in most posts here, but I thought it would be fun for you all to get to know Sunny a little bit better today.  After all, this blog started because of her.  Sunny is an autism service dog who belongs to our 7 year old son, Charlie.  Charlie and Sunny have been a team for almost 2 years now!  And boy, have we learned a few things since then.  

Sunny loves to work.  She aims to please whoever is working with her and really, really loves her family.  Especially her boy.  Sunny goes wherever Charlie goes.  Since there is such a large size discrepency (Charlie is 40lbs and Sunny is 90), Tyler or I need to act as Sunny's handlers when we're out in public.  But Charlie is always right there by her side.  

Sunny has quite a few important jobs each day.  Most days, especially during the school year, Sunny helps wake Charlie up and get him out of bed.  Charlie is NOT a morning person and having Sunny go in to greet him in the morning works so much better than mom or dad nagging him to get up.  Sunny was trained to respond to an alarm clock.  So, when the alarm clock goes off, Sunny runs into Charlie's room, jumps on the bed and nudges him with her nose and sometimes licks his face.  This usually works really well and gets him up without much complaint from Charlie...usually.

Another task Sunny has is just being present, being Charlie's constant throughout the day to help him with transitions.  Think of how many transitions you go through in a day......wake up and transition to the shower, then transition to getting dressed, then perhaps transition to the kitchen to make breakfast, then another transition from your house to your vehicle where you then transition from home to work. And that's just your morning!  Each transition Charlie goes through is difficult.  It's hard for him to switch gears as quickly as most people to go from one task to another.  Having Sunny with him helps to make the transitions smoother.  Plus we use tons of verbal warnings and prompts to help Charlie know what comes next; "ok, when the movie is done we are going outside" or, "we have 10 minutes left at the park and then we're going home.....5 minutes left....3 minutes left..."

Having Sunny in public with Charlie has been a huge help.  Going on outings in the community are often overwhelming for Charlie- large crowds, loud noises, walking safely in parking lots- it's a lot to handle.  But having Sunny with him gives Charlie something else to focus on and lessens his anxiety. If the outing becomes too much for him, we will often remove Charlie to a less busy area and try to have him calm down in a quieter space with Sunny.  We find that Charlie also walks safer with Sunny by his side.  He's less likely to dart out in front of a car when he's holding on to and focusing on Sunny.  Plus, with "block" and "cover" commands, that positions Sunny in front of Charlie (block)- especially at intersections- or behind him (cover) to help keep people behind him at a distance. 

 

Sunny provides Charlie with deep pressure therapy, daily, sometimes several times a day.  What this means is, Charlie responds well to deep pressure on his body to help him calm down, especially during melt downs.  This deep pressure is soothing to Charlie and helps him to regulate his body again.  So when Charlie is needing it, Sunny has a "lap" command or a "full on" command that either puts half of her body weight on Charlie's legs when he's sitting or positions her fully on top of him when he's laying down.  Both commands work wonders and he uses both.  Deep pressure also helps Charlie sleep at night.  He uses a weighted blanket I made for him, but sometimes asks for more pressure and has Sunny lay on him as well.  Charlie has always had a tough time sleeping since he was born.  He didn't sleep in his own bed until he was almost 5.  We noticed he has always slept better when he is with someone else.  So, having Sunny to sleep with has been a huge help.  She may not stay in the room the entire night.  She sometimes goes back and forth between Charlie's bed and the living room, but one thing we've noticed is when Tyler or I get up in the morning Sunny will always move back to Charlie's bed if she's been laying in the living room.  She starts the night with him and is always there in the morning when he wakes up.  

When we are riding in the truck to go anywhere, Sunny is positioned at Charlie's feet.  She has helped immensely during car rides.  Before we got Sunny we couldn't even ride into Rochester (10 minute drive) without a massive meltdown.  Now with Sunny, Charlie can hang on to her or, most of the time Sunny will rest her head in his lap and we imagine that little bit of pressure on his legs helps to keep him regulated.  There are still travel difficulties from time to time- driving anywhere more than an hour is a recipe for disaster and limits where we go, but for the most part Sunny has made a huge difference in this area.  

Besides being a working dog, Sunny has so much more to her.  She has quite the personality.  She has tons of energy and usually the only way to get the energy worked out of her is to go on a 3+ mile run.  She's goofy, tolerant, patient, and gentle.  She loves to play in the water and swim, loves running around in the yard with the boys and sometimes likes to play fetch- emphasis on sometimes.  She has fun pulling the boys in the sled in the winter, she hates being away from her people and she never roams far when we're outside and she's off duty.  Basically, she's an important part of the family and the best addition to Charlie's life.