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.