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.*

your words matter.

I don’t think there is a mom out there that hasn’t been kicked in the ass by motherhood a time or two.

Years ago, when Wilson was a nonverbal toddler and Charlie an infant, I attempted to take them both to Target.  This was pre-autism diagnosis, and I really struggled to understand and communicate with this boy of mine.

He started getting worked up as I loaded them into the double stroller.  As we passed through the automatic doors, he quickly escalated to intense screaming.  Everyone stared. I had no idea why he was so upset. His shrieks were so loud, he couldn’t understand a word I was trying to say (or see the bribes I was sending his way).  I turned around, wheeled them outside and bent down to try and reason with my frantic child at his level.

That is when his little ninja foot connected perfectly with my jaw. My toddler had just kicked me in the face.

I held back tears as I headed back to the car. Wilson still screaming, the baby was clueless, and we had no groceries to show for the courageous outing.

A man in the parking lot saw me and said, “You’re doing a great job. Being a mom is the hardest… I’ve got two little ones at home.”

I burst into tears.

What he said was nice, but do you know what I heard?

I heard that motherhood is hard, and it wasn’t just me doing it wrong. I heard that I am not weak, unqualified, or unfit for this mom-life thing, which is exactly the narrative I had been telling myself all too often.  This job is hard, and beautiful, and messy, and to acknowledge that is normal and to struggle is okay.

I felt seen at one of my weakest moments and encouraged by a stranger.

That man probably has no clue what he did for me that day. How he encouraged a struggling mom and that she still thinks about those words, years later.

Think about how easily you could do that for someone else… your words matter.

Just to be crystal clear, I know there is always a time and a place and commenting on a given situation doesn’t always feel right.  Just remember you are capable of being a bright spot in someone’s tough day.

Also, remember that your best is MORE than enough.

To the Mom of a Child with a Disability this Mother’s Day

I am thinking about you today.

I want you to know that everything you do matters.

When you crawl into bed at night, aching from your temples to your toes, know that you have done enough.  There may have been no progress made with toileting, feeding therapy or communication today and that is okay.

Your child is safe and so loved.

The weight of hectic schedules, parent trainings, OT, PT and visits with every other MD in-between can feel suffocating.

The research, the meltdowns, the battles over chicken nugget brands and clothing choices, all can withdraw every ounce of patience from your soul.

The smeared feces, the eloping, the pica and other behaviors you watched your friend’s toddlers outgrow.  Years later, they remain in your child.

Most days are exhausting and thankless and I want you to know that your child appreciates you, they need you, and they love you beyond measure.

You need to know that.

Your child may not be able to express this, some of you may have never even heard your child call you “Mom”.

But they know you are Mom.

Your child is so grateful for all that you do and would be lost without you. Just as you would be lost without your sweet child.

I want you to know that you are not alone.

When your patience has been depleted.

When you’ve cried behind your sunglasses at a park as you watched your child’s differences come to light. 

The loneliness you have felt from the long days spent with a child unable to read your emotions.

The difficult medical and educational decisions you struggle to make.

Know that there are so many of us with you.

We have felt the lows and celebrated the victories, too. We know the fear and the worry you wrestle with daily, and the immense pride you feel over the slightest progress.

I want you to find hope.

Today let’s bask in achievements and forget about regressions.

Even if only for one day.

Let your hope be stronger than your fears.  With so many unknowns in the future, know that it’s going to get better. 

I know this because we will grow stronger.

We will continue to learn, to advocate, to protect and make certain our children know their worth and just how very much they are loved. 

I am so thankful for this sisterhood of amazing mothers today and every day.

Have a very Happy Mother’s Day.

About Wilson’s Mama

I want to thank each of you for being here. By following along with Wilson’s journey and learning more about autism, you’re helping us in our mission to make the world a more patient, kind, and inclusive place to be and that means so much to us.

One of my hopes in starting this blog was to connect and relate with other autism families and help them not feel alone. The support we have found from this incredible community in return has been all that I didn’t know I had needed.

While I much prefer to talk about my sweet boy, I do love a good name-with-face, or in this case, name-with-a-voice connection so I wanted to share a little about myself, the writer/voice here at Wilson’s Climb.

I’m Lauren, Wilson’s mama, pictured here with the rest of our wild crew: my husband David, and Wilson’s little sister, Charlie. Watch for more on dad and sis in the coming months!

Some fun facts about me:

I majored in Journalism and Spanish.  When Wilson was completely non-verbal, I used to have dreams where we would talk to each other in Spanish.  It was like we had found the missing piece, the connection, and could communicate with complete ease. I’m so excited for that day to come.

I’ve jumped out of an airplane. Surprisingly, once the cord was pulled, that was the most peace and quiet I have ever felt in my life. I am not that brave or reckless anymore.

I love long walks with friends, candles, country music, and afternoons spent at the winery. Now this is starting to sound like a dating app bio so let’s get back on track…

I used to own two ice cream shops. When I drive by them now, I think about all my blood, sweat, and tears that are still in there. Small business owners are some of the most hard-working, persevering souls out there, especially right now. On the day Wilson was born, I was in my hospital bed while on the phone with the credit card processing company because our machines were down that day.

I’ll admit I have a shoe and graphic t-shirt obsession.  Some say I have a graphic t-shirt for every occasion. I can’t help it! I love words. They mean something and they start conversations.

I used to be an adaptive ski instructor.  I got to teach people with diverse abilities from paralyzed veterans, to children with Muscular Dystrophy, Tourette’s Syndrome, or hearing/vision impairments.  The mountains and the slopes are my happy place, and everyone should be able to experience them.  This passion of mine also influenced the name of this blog.

I think seeing yourself in your kids is both amazing and terrifying. My daughter is going to be a handful (remember how I jumped out of that plane?!) and payback is hell. My mom reminds me of that. And my grandma reminded her of that when I was young.

Becoming a mom and autism mom has been the most vulnerable experience of my life. It has been a heart bursting adventure and heart aching at times.

I reevaluate sharing my precious boy on such a public platform all the time.  The world can be big, ugly, and mean. I always come back to the realization that Wilson has changed me in the best ways, and he just might do that for others.

He has so much to share with the world. I’m just his voice, for now.

Cheers to so much love and happiness in 2021!

Xo,

Lauren

The mountains and the slopes are my happy place, and everyone should be able to experience them. 

“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!

will this ever get easier?

I have asked myself this question so many times in what felt like weak moments.

There are parts of this autism motherhood road I have accepted will not get any easier. There is no way to dull the pain you feel while watching your child battle big things, things no child should have to face. The anxiety, rigidity, and emotions they cannot make sense of or verbalize. Their frustration channeled into self-injurious behaviors. 

When your child hurts, you hurt. Try as I may, I cannot come up with the words to describe the feeling of seeing my son hurt himself out of frustration.  When there is nothing left for him to do except scream at the top of his little lungs, the words he needs consistently trapped deep inside of him. I picture our developed brains something like a smoothly running interstate, while my son’s is an entanglement of traffic jams, dead ends, and one-way streets.  A never-ending, exhausting road. 

Admitting the difficult, to yourself or others, is not weak. 

That is where you learn to grow, adapt, and summon up your strength and resilience.

Whatever your struggle is right now, keep at it. Lean on others, talk about it.

You will grow stronger.