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. 

Merry Christmas!

We miss so many people and places. We’ve slowed down, just like everyone else in the world. Work, school, and therapy schedules have been reimagined or discontinued.

But we’ve also learned more about each other. We’ve danced, sang, and giggled more. We’ve rushed less. We’re trying to be more intentional and live with more gratitude, so we are sure not to miss the moments of joy, especially amid the chaos.  

The JOY of this season through their eyes is the best thing on earth, and I know it will carry us well into 2021.

We wish you all a very Merry Christmas!

xo, The Emmetts

We Wish You A Merry Christmas!

Wilson Sings 🎶

Wilson has been singing so much lately! When he sings, it’s the most we get to hear that sweet little voice of his and I adore every bit of it.

Memorizing songs, phrases, or scenes from shows and movies, and counting has always seemed to come naturally to him. His memory is incredible.  Because of this, using learned phrases to communicate with us and others has been something that has continued to grow and expand over the years.  He still communicates mostly in 1-4-word phrases, but lately he has been using so many new ones. 

Numbers and songs are always the same, this makes them reliable in his mind. They are always in the same order and tune; the predictability is comfortable for him to return to.

He likes to listen to the same songs (and watch the same shows), repeatedly, so that he can learn them. He seems to pay attention and learn every piece of them, the tune, the timing, the words, the varying voices, the stops and pauses.   

Spontaneous and functional language is much more difficult for Wilson to retain and access. Even when it’s something he has learned and practiced.  Sometimes, questions need to be presented the exact way he has learned them for him to be able to recognize them.

For example, he knows the answer to “What’s your name?” is “Wilson.” But if someone says, “Hey little guy, tell me your name!”  He likely wouldn’t understand what is expected as a response, or that he is even expected to come up with one.

Just like every year on his birthday, we work on the new answer to “How old are you?”  To him, he already learned that answer!

This boy’s hard work continues. He is such a little warrior. There are so many ways this guy brings joy to those around him. I tried to capture some of his favorite tunes here to share!  

Click link or image below to listen.   

His favorite songs from Frozen and the Holiday Season

From His View: Rigidity & OCD

Every morning for the past several weeks, Wilson has come into our room, shut our closet door that was left open the night before, goes over to our window and says “There’s the moon!” and repeats this, until one of us says, “Yes, that’s the moon!”

He eats the same breakfast every single day. He has for years.  He chooses clothes from a handful of t-shirts and pants he will tolerate, often fighting for the same ones he wore the day before.  He will undoubtedly change into his favorite outfit when he returns home.  He requests the same songs on the way to school each day, and different ones on the return trip.

Many of us have passively used the term “OCD” (obsessive-compulsive disorder) as an adjective to describe a clean or controlling person. I’ve done it to.  Seeing what rigidity and actual OCD behaviors look like in my seven-year-old has been incredibly eye-opening. His rigidity has slowly and steadily become his biggest roadblock to progress over the past several years, especially when it comes to learning in any kind of group environment.

These kinds of behaviors run deep, they are very real and mean so much to him. They all serve a purpose.

Let me explain.

Rigidity, in some form or another, has always been present on Wilson’s evaluations, treatment plans, and goal documents since the beginning of this autism journey.  

From his view, everything is regimented, down to the way he plays with his toys. Over the years, I have watched these behaviors go from preferences, to strong preferences, to persistent preoccupations to full blown obsessive-compulsive behaviors.

He depends on order, routine, and sameness to feel calm.

Wilson has a plan for almost everything. He expects certain lights to be on, certain doors to be closed, and most certainly his familiar foods to be served. He smells his sandwich when I give it to him to make sure I didn’t switch the brand of bread.  For most meals in his day, he requests a sandwich (always cut the same way) with two pieces of additional bread. He cannot have one without the other.

Unfortunately, some of his very favorite foods we only buy occasionally, or we must hide them because he obsesses over them so much.  The obsession isn’t just in consuming the food, it’s where the food is put away (he constantly returns to check on it), who else is touching and eating it, and of course, dealing with it running out.   It’s heartbreaking to not provide something that he loves but at the end of the day, sometimes is just isn’t worth the stress it puts on him and us.

In his mind, things belong in a particular place. If he finds that something is out of place, he cannot move on with his day until it is corrected.  This becomes problematic when the item is something one of us is using, or a toy his sister or peers are playing with.  Sometimes we make a point to wash his clothes or sheets while he is at school, because depending on how he is feeling that day, those items out of place can be very difficult for him to work through.

When you hear about people with autism struggling with change, it is often things like this that may seem simple and small to most. A favorite shirt that’s missing, an empty box of crackers, or the salt and pepper shakers out of the cupboard.

We are constantly working on his flexibility and adaptability. Baby steps in an understatement.  When sensory sensitivities are involved, change must be slow and very intentional. He has worked programs with Applied Behavioral Analysis (ABA) therapy in areas like this over the course of several months to years. We practice a laundry program where he puts the clothes in the washer, then the dryer, then back to the closet. We talk through it the whole time, assuring him that the clothes will end up back where they belong.

We cannot challenge him in all these areas at once. Can you imagine how overwhelming that would be? A new brand of bread, his favorite tune unavailable on the way to school, only to come home to find the sheets off his bed, his sister had moved his toys out of their line up, and someone had eaten the last slice of watermelon?

We work on a little each day. One day at a time.

Some of you might wonder why. Just let him wear dirty clothes and eat watermelon all day! Truthfully, sometimes we do. We pick our battles. But this is just the beginning. He needs to learn to adapt and be flexible with his plans and his thinking. He needs to learn to cope with sensory input that isn’t ideal.  Why? Because I want him to be able to participate in this world and be comfortable beyond these four walls. Where sometimes the lights need to be on, and the doors wide open.

He’ll get there. One day at a time.

Raising a Child with Autism – You Are Not Alone

During the years surrounding Wilson’s autism diagnosis, I could barely say the word “autism” out loud.  

I thought I would just break down every single time and, frankly, I didn’t have time for that. To be clear, this had nothing to do with shame.  Not one day has gone by that I am not immensely proud of this boy.

That Dumbo went everywhere with him back then.

It was about fear, worry, the unknown, and all the other bumps along the road to acceptance. All a parent could ever want is for their child to be okay.  Autism has a way of tricking your brain into questioning if that will be the case.  There is so much to learn and understand before some of that uncontrollable worry begins to fade.

I threw myself into research. We got on waitlists. I began on the path to truly knowing this boy.

And I wrote. I got it all out. Everything that was too hard to talk about at the time.  Processing this kind of information is not easy, and it can be very lonely. This is a big reason why I am here, sharing our story. I never want other families to feel the same confusion and loneliness that we felt in the beginning of this journey.

It has meant so much to me to connect with other autism families, some who are going through the steps to a diagnosis or have a child that was recently diagnosed, and other parents of children of all different ages and abilities.

The main message I want to convey to all these parents is that there will be MANY times that you will feel alone in this, but you do not have to be.  I constantly must remind myself of this.

I cannot tell you how many situations there have been where my knee-jerk reaction was that no one knows how this feels.  The same battles, day in and day out, the medical incident reports, medical and educational decisions, the moment I saw AUTISM written on paper in an evaluation about my boy. 

I’ll tell you there is not one thing I could tell my fellow parents of children with autism about our life that would shock them. Seriously. The fears, the frustrations, the meltdowns, and all the “inappropriate” behaviors we’ve faced. They GET it.  They also get how big some of the simple, small victories truly are as well.    

Things can still be hard for me to process a lot of the time. Sometimes it seems easier to sit alone with the tough stuff. If you do this, please don’t stay there long. Let someone sit with you.

Find your own way to work through your thoughts and feelings. They are real and should not be ignored.

Talk to someone. You might find this safe person in a waiting room at therapy or the pediatricians office, on the playground, or online.  If all of this sounds impossible and overwhelming because you can’t even say “autism” out loud yet, that is okay too! It will get easier to talk about and then you will be ready to lean on others.

The best way for your friends and family to learn about autism and support you as a parent raising a child with autism is to tell them. Tell them about your child. Tell them about your struggles, your child’s struggles, strengths, passions, victories, and all the things.

They might not understand exactly how you feel, but they don’t have to. Sometimes talking through things just leaves you feeling better. I promise your people want to support you and celebrate with you and your child, you just have to let them.

I’m not saying you have to wave your autism awareness flag as loudly as I do. We all do this life differently. Find a place that makes you feel supported.

I am so much stronger than the day I walked out of that psychiatrist’s office with my son’s diagnosis in hand.  My whole family is. If you would have told me this back then, I may have not believed you.  

My boy is always growing and evolving and most days it feels like autism is always one step ahead of me.  It’s like trying to catch and examine the wind.  There is still so much unknown to wrestle with.

While I may never understand everything going on inside of this complicated boy, what I do know is that I will never stop trying, and it helps to know there are so many people here rooting for him.

Flashback to right around his diagnosis. This picture captures pretty well how it was going! Baby Charlie’s face gets me every time 🙂

autism, anxiety, and lost time

One of the most unreasonable, exhausting, and heartbreaking sides of my son’s autism is his battle with anxiety.  Sometimes anxiety falls under the ever-broadening umbrella that is Autism Spectrum Disorders, and sometimes you face anxiety as one of many comorbid diagnoses.

In our world, anxiety is the fierce sidekick to autism. It’s the root of things like self-injury, aggression, and property destruction.

It is also the thief of time.

Anxiety is the reason you will not find our family in line for a ride at Disneyland, a photo with Santa, or even a burger and fries.  No line, anywhere. Waiting is hard and waiting in unfamiliar environments is when anxiety seizes the opportunity to creep in and serve up an emotional and physical beating until my sweet boy is missing from behind those bright blue eyes.

What I would give to crawl in there too, to fend off this awful intruder for him. To remove all the pain and confusion and just leave behind the unique, beautiful wonder.

We have found some alternatives, like Sensory-Friendly Santa appointments.  You learn to adapt.  I have accepted that some places in the world are just not for us.

At least not for right now.

But I would be lying if I didn’t say that I sometimes wish we had a perfectly curated family photo at the local pumpkin patch.  We went the other day, my two kids and I, and after disrupting all the other families there with my boy’s bloodcurdling screaming (he really has found a new pitch), my attempt to carry him out looked more like a curated kidnapping was underway.

Here’s the thing: a kicking, screaming, fight-or-flight meltdown looks a lot different in a seven-year-old than it does in your typical toddler I-want-a-candy-bar scenario.

When Wilson was five, we both sat in the middle of a busy hospital lobby, sobbing. I could not move him. I had given up until a guardian angel in the form of a nurse offered to help us.

Sometimes we spend hours on meltdown and recovery over something as simple as clothing or food. These are moments, hours, and days that we will never get back.

The thief of time, you see.

These kinds of days can take it out of you in every way imaginable. You boil down the goals to giving him space and keeping him safe.  Sometimes you just want the day to end so that tomorrow can be new, and hopefully different. And just maybe the world won’t be too much for him then.

Here’s the part of our picture I want to paint very clearly: my boy is happy.  He is kind, gentle, finds joy in the simplest things and then radiates that happiness throughout the room. He is also fearless, brave and works hard every single day on regulation and communication.

A little contradictory? I know, I am confused too.

We cannot control when anxiety will show up, how long it will stay and what it will leave in its wake.

We try, but this is just one of the many unpredictable parts of this autism journey.

What we can do is continue practicing coping and regulation skills, even if sometimes that means getting out of our comfort zone, so that one day, you will see us waiting patiently in a line somewhere.  

We can also soak up the happy moments and continue to celebrate all the small victories, because really, they are all big ones to us.

never give up

There is much going on inside of this sweet boy right now.

We’ve had a rough week. One full of behaviors so unpredictable they leave you quietly planning ways to never leave the house again. The world is just too overwhelming for him sometimes.

Today is a new day though. Wilson felt calm and regulated, so I felt brave.  We ventured out to the bakery. This little man did amazing, he even kept his mask on the whole time.

Thanks to nevergiveup.org for the important reminder.  It’s always worth trying again, when the time is right.

quarantine, autism, and the chance to slow down

Sometimes this little man is so intensely focused on an object or activity, the rest of the room, the rest of the world, falls deep into the background.  He takes his time, studying pieces of this world sideways, upside down, and from every other possible angle. 

For someone who “lacks appropriate eye contact” (so they say) when he does look at you, he REALLY looks at you. He examines every wrinkle and freckle, he touches, smells, and tastes.

He might not notice a person enter a room because he is intensely focused on a tiny bird, gently perched right outside the window.  He doesn’t just see a bird. He sees feathers, shapes, unique movements, wings, eyes and so many colors. 

Or he might be distracted by the steady, piercing sound exuding from the bothersome, bright overhead lighting. 

So, when the COVID-19 pandemic and subsequent quarantine hit, you can imagine spending hours a day trying to draw this little man’s attention to a computer screen for Zoom therapy sessions was rough. 

Why did we try? Because this isn’t about falling behind in the world of ABC’s and 123’s. It is about attending and listening so that he can learn in an environment beyond 1:1. It is about co-regulation and self-regulation so that he doesn’t hurt himself. It is about word comprehension so he can use them to get his increasing needs and preferences across.

The silver lining in this dark cloud of quarantine has been the chance to slow down. To be still and learn from this curious, brave, unique boy. Watching him radiate happiness from the simple things in life that most of us are moving too quickly to appreciate.

Like the way he savors every bite of summer watermelon and dances with his shadow when the sunshine brings it out to play with him, this little human is so complex yet celebrates such simple happiness every day. 

For many of us parents of children with disabilities, the quarantine has changed everything, yet much remains the same.  The isolating road we are on has narrowed with less in-person support and interaction, yet we continue to face the same kinds of difficult medical and educational decisions that we always have.

We continue to champion for our children to have the supports and services they need to thrive, while we consciously fight to keep our hope stronger than our fears.

With so many unknowns in the future, we must believe that it’s going to get better, and that 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.  We will continue to be their voices until they have found their own.

“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.