stereotypical autism and cute flashback videos

Numbers have always been Wilson’s jam. To this day, he still counts down to calm down and points out a 7-11 convenience store when we drive by. I think when he first “had” about 15 words, the numbers 1-10 made up the majority. In the world of developmental delays, you must start tracking these things early on to report back to doctors and specialists.  

I also added things like “uh oh” to that list. Reaching, I know.

There is a moment in these videos where he looks at me, right before saying “blast off!” at the end of his countdown and I must admit, I clung to that moment for a long time as a sign that Wilson did not have autism.

I knew very little about autism at the time, and lack of joint attention and shared joy was one of the red flags on our radar. You can see in many of the videos, he doesn’t respond to my verbal praise or reinforcement.

This was the kind of acknowledgement and engagement I was getting from him around that time. Tiny glimpses here and there.

He was diagnosed with autism the next year. It didn’t long for me to learn that autism is not a list of traits or characteristics to be checked off. And it most definitely isn’t the stereotypical version of autism that many people view it as.

Let’s debunk a few more of these autism stereotypes while we are at it:

  • “Verbal communication equates with cognition.” Nope, not even close.  In many cases, there is confusion among the brain pathways involved in planning the sequence of movements needed to produce speech.  The brain knows what it wants to say, but it cannot plan the movements needed for speech and sound. 
  • “When you can’t see signs of autism, the person must be “higher functioning” or have an “easier” form of autism.” Like most people in this world, there is always so much more going on than meets the eye. There is no telling how hard an autistic person is working to hide certain traits perceived as socially unacceptable, or how hard they are working to process the environment around them.   
  • “If they don’t make eye contact, they aren’t listening.”  Wrong. Sometimes that’s HOW they can listen best. Eye contact can be distracting and uncomfortable. 
  • “If someone is nonverbal, they likely don’t understand what you’re saying.” Nope, see #1 above and ALWAYS presume competence. 
  • “Autistic people aren’t social, they just want to play alone/be alone.” Not necessarily, although everyone is different. In my son’s case, he needed to learn HOW to initiate play and still PRACTICES how to play with others (turn taking, etc.) Some things like this don’t always come naturally to him, but he LOVES interacting with other kids. 

Bottom line, autistic children and adults might have a different way of processing the world around them, but they think and feel deeply just like anyone else.

click on images/links below for some cute flashbacks and a sweet little voice. ❤️

The Balancing Act of this {Autism} Life

It’s 9 a.m. and my toddlers are eating popsicles. 

They are content (even quiet?) in their car seats behind me as we drive to ABA therapy.  We are going on year three of “potty training” (I could call it a lot of other things) with my son Wilson, who is almost five years old and on the autism spectrum.  He really pulled one over on me this morning with the new potty sticker chart by managing to sit and pee in the toilet four times more often than he would have on a typical morning, scoring a popsicle for himself as well as his little sister.

Oh well, it’s all about balance, right?

As parents, we all strive for a sense of balance in our children’s lives. There are the usual suspects: screen time, treats, sleep.  If you are a parent of a child on the spectrum, you know there tends to be a few more items to add to the daily juggle.

You pack his food for the day (the same food you packed the day before and the one before that).  You keep his snacks on hand, knowing full-well you can’t just pop into a restaurant or convenience store and find something he will consume. 

You try to get him to taste new things but you also want him to eat.  He has inherited your stubbornness and those hunger strikes are brutal for everyone. He knows the difference between chicken nuggets and tenders and how dare you serve one instead of the other?  If you buy another brand, size or shape of his precious food he will make certain you regret it.

You sneak eight supplements in while keeping all the gluten and dairy out.

You plan and adhere to a routine (because that’s where he thrives) but also create space for him to enjoy some toddler spontaneity. Allow him freedom but not so much that that he’ll wander off. Let him feed his curiosity but keep this fragile and fearless little human safe.

You let him stim and enjoy scripting off in his own little world, but not for too long, or he won’t let you join him there.

You prepare for the battles you know are coming, like haircuts, dental exams or finishing his food containing aforementioned supplements. You keep a reserve of patience for the obstacles you don’t foresee, like an altercation over his open urine sample (he wanted to pour it into the potty like a “big boy” and I needed to ship it off to a lab in Texas.) Or that time he flushed his soiled underwear down the toilet…

You enjoy the quiet moments and you fear them. If it’s too quiet, then someone is up to something, somewhere.

You teach him “I want” and “no” when you would rather he was saying “please” and “no, thank you”.  When he requests something appropriately, you usually oblige because it took so long to get there. In the back of your mind you worry that you tend to give him anything he wants to avoid a meltdown.

You let him struggle. This, this one is the toughest. To wait.  While he fumbles into his clothes or attempts to put his shoes on the wrong feet, you take pause instead of jumping in to do it for him.  You hold your breath when people ask him questions and he struggles to think of a response, trying to give him a chance before answering for him.  

You start to plan for the future, but it’s overwhelming. The unknown is terrifying, so you try to live in the present.

You are his advocate, not just for more, but also for knowing when he’s had enough poking, prodding, testing or hard work. The real balance is knowing you would do or try anything to help your child while having the awareness that you cannot do it all at once.

I know many of us never feel like we have found this sense of balance, but we will never stop searching for it.

*Originally posted in July, 2018 but still resonates today. I am happy to report that we survived potty-training and I get to hear “Thanks, Mom!” so often it melts my heart.*

“I’m so happy!”

        
“I’m so happy!”

This boy has said these words a lot lately. What this means to me, I must try and explain. There have been periods in his life where I never thought he would be able to say something like this. When you have a child with limited or delayed speech, you sometimes spend years coaxing out the (seemingly) simplest of words.

For me, the one that will always stand out as the longest wait was “Mom.”  I will tell you that today, when he says, “Hi, Mommy!” it still sounds just as sweet as the first time I heard it. Even on those days where he says it twenty times in five minutes (repetition, repetition, repetition!) 

There were also periods where I knew he didn’t feel happy.  Really long, rough patches. We still have our hard moments, hard days, hard weeks. Truthfully, “hard” seems like such an inadequate description. The things we are dealing with are ones I never imagined facing as a parent, and I will never grow used to, either.

This boy endures a difficult reality every single day.  The pain, confusion, and frustration he feels is immeasurable at times, especially because he cannot explain it to anyone. It breaks my heart how lonely that must feel.  

But you know what he can do? He may have a rough day, but he’ll also find moments to just sit in gratitude and appreciate his life and unabashedly proclaim his happiness whenever he feels it. “I’m so happy!” he’ll shout, completely unprompted, when a familiar song comes on in the car, or he’s snuggled up in his favorite blanket, or when he is served a huge slice of watermelon. 

This little seven-year-old practices gratitude for simple, happy moments.  So why shouldn’t we?

I don’t let myself get lost in the hard days anymore. A tough morning does not define an entire day. Even in this dumpster fire of a year, there is still so much to be happy about. Don’t get so lost in the hard that you miss the simple, beautiful moments like this one.

I’m so happy, too, buddy. 

Hi, Mommy!
I’m happy!

you are a good parent

“… You’re not in control of what life throws at you, you are in control of the fight.” – Rachel Hollis

Truth: It has been a little rough over here. And I know a lot of families are feeling it too. A little Monday motivation (ok and a lot of self-talk) coming at you…

You are a good parent.

Whether you choose to send your child to school, therapy, a neighborhood cohort, daycare or homeschool.

Or maybe that choice was made for you by state and county regulations.

There are no right or wrong answers right now. Only the path that’s best for your family.

You are enough.

Remember this as you head down this new, unknown road. As you prepare for the balancing act of your life and gear up to fight for continued support and services for your kids.

You are stronger than you know.

If you ever doubt this, look at your kids. Their strength, adaptability, and resilience and just how far they’ve come in their short time on this earth. Then get back in the ring.

We’ve got this.

World Autism Awareness Day 💙

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We participate in Light It Up Blue to celebrate our boy and all of the hard work he puts in every single day.

Autism will touch your life. You will interact with people on the spectrum in your community, your workplace, and in your children’s classrooms.

That is why we share our story. To help spread awareness, understanding, acceptance, inclusion and kindness so that everyone impacted by autism can find some more compassion and patience along their road.

Our hearts are FULL seeing all the photos roll in of you all in your BLUE!! Keep them coming, friends! You can text, post on social media or email them to wilsonsclimb@email.com. We’re putting together a special little something for our guy.

We’re so thankful you are on this journey with us.

Birthdays and Autism

 

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My little ONE-year-old

As a parent to a toddler on the autism spectrum, birthdays were hard. Seeing my son around his peers was a very loud reminder of just how old he was and where he was developmentally.

In those pre-autism-diagnosis days, we attempted all the traditional birthday festivities that a typical child would enjoy and our son wanted nothing to do with any of it. We couldn’t get him to open a present, listen to the “Happy Birthday” song or even look at his cake, let alone taste it. He ignored all of our friends and family and their birthday well-wishes.

My friends would tell sweet stories about words their children were saying and I would completely miss the cuteness and celebration of it all. I was stuck on the fact that those children were talking and my boy wasn’t.

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Wilson’s First Birthday

I was jealous and then I felt guilt and anger about that jealousy. So many ugly emotions.

One year we really didn’t want to do anything to celebrate his birthday. It’s so frustrating when something that is supposed to be fun ends up overwhelming and upsetting him.

Parents: if you can relate to this, I want to remind you to hang in there.

Over time, our son has shown us that birthdays should not be hard or sad. Or remind us of his delays. He has shown us how to best celebrate him, and that it’s OK if that doesn’t look “typical”.

This past year, our little six-year-old had the best birthday celebration to date. Friends brought his favorite things: old keys, wooden treasure chests and tons of other pirate paraphernalia.

He was so happy.

He still didn’t eat the cake, but he did request the birthday song multiple times and all of our friends and family indulged him in several rounds of the tune. The look on his face while we sang to him was better than the byproduct of any cookie-cutter birthday party I had imagined in years past.

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This is SIX!

Attending his peers’ birthday celebrations was and remains a whole other ball game. Our little guy doesn’t understand this it isn’t his day. He believes candles should be blown out and presents should be opened, simple as that.

We’re navigating these events more smoothly with visual schedules and a lot of planning ahead. This usually means bringing his own candle along so he can blow it out and staying for a brief visit before he gets overwhelmed. Knowing what is ahead is huge – we don’t want to be bothersome to the party-planners but most often need to know the details for the sake of EVERY invitee’s enjoyment.

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Great Grandpa’s Birthday

We’ve learned to not only try new things, but to revisit old tactics that may have not worked the first time around. Keep trying all the things: silly, practical, innovative and traditional.

I can’t tell you how many times things have gone differently than I expected them to. These moments often times felt like a failure. Now I know they were just stepping stones to get us where we need to be. It’s all worth a try to make our boy feel strong, calm, and happy.

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Progress will happen. It just might look different than you had imagined. Be careful not to miss it.

Your child will grow and change. And you will too.

You will learn how to best celebrate them in a way that is so incredibly special to them. It doesn’t matter if they aren’t interested in the latest Marvel characters, sports teams or Disney princesses.

I will celebrate my little pirate and continue to round up old keys for him forever if that is what endlessly fascinates him and makes him happy.

Now, we celebrate BIG. No more comparisons. Our boy is in a league of his own, right where he belongs.

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I Would Not Change My Son for the World.

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“I would not change my son for the world. I would change the world for my son.”

I came across this quote the other day and it reminded me: This is why I share my son’s story. There is so much about his autism experience that is out of my control. What I can do is spread awareness and hope that it leads to a little understanding, patience and compassion.

Many people are unaware of the reasons behind some “autistic behaviors”. Autism affects communication, social development and sensory processing, with the degree to which these areas are affected being unique to each individual.

Sensory processing difficulties are really hard to understand because the triggers can be invisible to neurotypical people. I am slowly learning more about the triggers and sensitivities in Wilson’s world.

He is very sensitive to bright lights and certain sounds. He has left the room screaming or cowered in my lap over noises that a random toy will make.

He is very particular about what clothing he will wear and what foods he will eat. He often studies toys or objects by turning his head completely sideways or upside down.

He seeks movement and pressure and likes to bump into people or be wrapped up tightly in hugs or blankets.

He is learning ways to cope with his anxiety and sensory reactions, like chewing on something or taking deep breaths. Sometimes singing a familiar song will help.

Many people with autism find comfort in routines and repetition, just like Wilson. He says things repetitively, plays with toys in the same manner or repeats little scenes over and over. He gets irritated if we take a different route to therapy or home. His memory is truly incredible.

When his sensory system is overloaded, he breaks down. His first reaction is to scream. His screams have reached an all-new high pitch. He usually becomes limp, hits, or tries to run away. Sometimes he’ll hit himself in the head, slam doors or push furniture down.

People stare and make snarky remarks. Luckily, this only bothers my husband and I.

Wilson doesn’t read other’s emotions well or understand the comments. Someday he will though.

So let’s talk to our kids about how all their friends are unique, and that it is a beautiful thing. How we all learn at a different pace, and speak in distinct ways, but can still have so much in common with one another.

All children could benefit from a friend to help them overcome challenges and build confidence and self-worth. Let’s teach them acceptance and inclusion.

Let’s change the world.

 

(originally posted: April 16, 2018)