Autism & Progress & a Proud Mom

Proud mom moment.  Wilson hasn’t had his hair cut outside of our home in more than six years.  The last hair salon we attempted with him was when he was about two years old, and he was screaming so much before he even got into the chair that the stylist said she couldn’t work with him.  So, we left, and started a haircutting program with his therapy center that lasted about four years.  I’ve continued to cut his hair at home, and while he doesn’t necessarily like it, he has improved greatly and will tolerate it.

Last week, while I was getting my hair done, I asked my stylist if she would be willing to attempt to cut his hair at her salon.  I honestly sat there thinking about it for an hour or so before I asked her.  Deciding when and how to attempt things like this is tricky.  I don’t mean to be pessimistic, but we have been there and done that and I was sweating at the thought of attempting it again. I pictured the screaming and the other clients staring, and the headbanging, and the hand swatting. And thought maybe continuing with the mediocre mom-cuts was good enough.

Her salon is small, quiet, and I had a feeling he just might like it there.  She was very happy to give it a try and we agreed that if it didn’t work out, we wouldn’t push it.

I talked with Wilson about the salon over the weekend. I told him about the cool plants he’ll see there, the big mirror, and the nice lady named Sarah that was going to cut his hair this time. He said “no.”  Later we talked more and landed on him getting to watch his dad’s iPad after his haircut. Sunday night and throughout yesterday, he calmy repeated his schedule, including the haircut.

He did AMAZING.  He stayed calm, let her use scissors (hadn’t used those in six years either!), and was so excited to feed the ducks at the lake afterwards.

Proud is really an understatement. As much as I want to erase some of our tough experiences from memory, they sure make me grateful for how far we have come.

Also, there are really good people out there. Find the courage to ask, it’ll be worth it.

Wilson’s Climb x Little Rebels with a Cause

We’ve been busy over here at Wilson’s Climb! We started an inclusive clothing collection, Little Rebels with a Cause, with this sweet boy in mind. Sometimes it’s just nice when the shirts can do the talking for you.

Our designs quickly morphed into much more… for the advocates, the upstanders, and the world changers.

We make apparel with purpose for LITTLE REBELS: upstanders who embrace differences.

Our son is an adorable, curious, eight-year-old who is autistic and processes this world differently than many of us do.  We see the way his little sister advocates for him, from running to get his headphones when a noise is painful for him, to telling most people she meets that her brother has autism. She does this in the same way one might say their brother is great at football or playing the guitar. She’s proud of him.

We’ve seen the value of inclusion for both of our kids, and so many more incredible humans who are a part of this Little Rebels community. We have so much to learn from one another.

We believe words are important, and we hope our tees spark valuable conversations in your communities.

Our son’s sensory processing difficulties can make clothing choices tricky.  We worked hard to find the softest, most comfortable tees around, most with easy to tear-away tags. You’ll notice an abundance of black and white throughout our designs, as that is the only kind of tee he will wear.  

We’re proud to donate ten percent of every purchase to some amazing nonprofits. These programs range from assisting anyone with a disability in finding their inner athlete through outdoor recreation, to programs who build inclusive and ACCESSIBLE playgrounds so that ALL can play, and those who advocate for a loving and inclusive community for anyone with a disability.  We plan to introduce additional nonprofits throughout the year.

We look forward to raising awareness for these programs and making a difference with you.

P.S. A heart is one of our boy’s favorite shapes, so he helped us out by drawing the one in our mission statement.

Come see our shop at http://www.littlerebelscause.com

Unconditional Sibling Love

I’ve found it very difficult to protect my heart when it’s beating outside of my body. These days it’s running around in the form of little sandy-haired, blue-eyed kids, in such vulnerable form.  

I’ve wanted to protect these two from the Big Bad World since the moment I met them. Most of the time, my boy’s adventurous spirit would get in the way of the bubble wrapped life I had in mind for him.  

I wasn’t ready for fearless. I wasn’t ready for vulnerable. I wasn’t ready for autism.

How will I protect him now? Will he be OK?

Will he ever talk? Attend school? Be bullied on the playground? Will he have a job? Drive? Live independently? Fall in love? And commence the spiral to nowhere.

As parents, we never want our children to feel pain and sadness. Hunger or cold. Lost or confused. It tears me up from the inside out when I look into my boy’s eyes and see how confused and frustrated he can become.

I remember a moment years ago when, during one of his meltdowns, his 2-year-old little sister hugged him and would not let go. Eventually he started laughing because it became a game to try and get her off him.

I noticed something that day. The way she looked at him. It was simple and unconditional adoration. In her eyes, he isn’t “different”. He is her big brother. Her hero. Her person.

I pray that she will always see him in that same light. As time passes, the weight of his world will inevitably impact hers more.  New challenges will arise, they both will grow and change, but oh, how I hope that their unconditional love remains the same.

My children are both unique and made for one another. I can’t catch them every time they fall, but I can teach them how to help one another back up. To comfort one another. To laugh together.

They have shown us fearless. They have taught us how to find comfort in vulnerability.

My son has a phenomenal tribe of family, friends, doctors, teachers, therapists, specialists, and peers to help raise him up as high as he can go.

And he has her.

So just like that, I had all the answers to that pesky spiral to nowhere:

He’s going to be amazing.

They both are.

E I G H T

Joy.  I want to get it right, explaining this birthday boy to you, and joy is what comes to mind over and over again.

Sometimes fragile but mostly fearless, he’s going to discover, celebrate, and remember every little thing about this big old world.

He finds the joy around him all the time… a spontaneous “moo!” to the cows out his car window and an ecstatic “choo choo!” when we are lucky enough to spot a real-life train.

I know other eight-year-olds might not do that, and that’s okay. Sometimes he celebrates joy in atypical ways or in places you wouldn’t expect. But it’s always there with him, radiating throughout the room. 

He is happy in his soul.

We don’t waste moments with worry & comparison.  We left that game a long time ago. Wilson is in a league of his own, right where he belongs. 

We’ve been rushing this boy to grow his whole life. In true Wilson fashion, it will all be in his own time, and in his own way.  Now I see this big eight-year-old in front of me and pray for time to slow down, just a little.

I am so thankful for his joyous energy, his curiosity, and the way his happiness feels like sunshine.

Hoping this year is filled with chasing more trains, searching for the ends of rainbows, and that sense of wonder found only in a child’s heart.

autism & changing the world

When autism entered my life, I knew nothing about it. Books and the internet provided some information but at times they were also terrifying rabbit-holes to nowhere. No one was talking about autism. Because of this, I think the road to acceptance for many parents with special kids is very lonely and isolating.

It did not take long to realize that there was very little I could control about my son’s autism. We worked hard at various therapies all day long for very slow progress. We still do, and it is worth it.

We built a team of therapists, doctors, and interventionists to help him learn, keep him safe and help us learn to communicate with him.

The more I came to terms the impossibility of completely changing my son’s autism, I decided we were going to change the world instead.

I want the world to be easier for him to navigate through. I want awareness, kindness, acceptance and inclusion to surround him wherever he goes.

I want people to know my boy, to understand him. I know this is not going to be easy. We work every day to do that ourselves.

I want people to know that his favorite color is red. He has never told me this, I just know.

I want children to understand that he wants to play with them, even though it does not always look that way. They need to know that most of the time his words are trapped somewhere deep inside of him. That he is not intentionally ignoring them and that his hearing is perfectly fine. He just does not always understand their words, but maybe they could show him instead.

You see, too many words get all mixed up in his head. But if you take his hand or tap his shoulder and show him the way, he just may follow.

Little friends need to know that he might not share the toys that are precious to him on a particular day because the way he has them lined up and organized is what he depends on to make him feel calm and like all is right in the world.

I want the shock and awe stares during the public meltdowns to disappear. Our meltdowns are not the typical toddler I-want-a-candy-bar kind. They are communication breakdown, sensory overload, all- systems-firing and frightening. I want a stranger to tell me I am doing a good job or acknowledge that being a mom is hard, instead of a judgmental glance when I struggle to pick my child up off the parking lot pavement.

This is where we begin to try and change the world, by sharing one boy’s journey with autism. Let him be your reminder that things are not always as they seem and to always lead with kindness and patience.

We are so thankful that you are here with us!

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.