A Day in the Life of Super Wilson

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Early morning Developmental Pediatrician appointment. 

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We use visual social stories to help him know what to expect. He did awesome!!

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Lunch in the car while listening to the Frozen soundtrack, of course.

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Straight to Applied Behavioral Analysis (ABA) therapy.

More Frozen in the car. ❄️

Home session of ABA therapy complete with a little haircut session that he CRUSHED!

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Sunshine and dinner with little sis.

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Bath and snuggled into his sleep tent.

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So to sum it up: work, work, work, work, work. We ask so much of this boy and I am constantly in awe of his perseverance.

rituals & repetition

I find it so fascinating that someone who can be viewed as so “different” really just craves sameness.

But that’s just one of the many contradictions that lives in this autism world of ours.

Wilson’s obsessive, rigid and repetitive behaviors are sometimes the toughest part of his autism. Often times he needs things lined up, counted, and categorized.  Sometimes he is just incapable of adapting or any kind of flexibility in thoughts or routines.

These rituals and need for order help him block out the stuff around him that’s just too hard to process, like emotions, language, stress, and sensory overstimulation.

This is his latest passion: he rolls up his clothes and puts them away in the same spot every time he leaves the house. He RELIES on the fact that they will be in that same spot when he returns. He immediately puts the outfit back on, and rolls it up and puts it away before bed.

We lovingly joke that he’s like Mr. Rogers putting on his sweater when he arrives.

We try to sneak in some washes when he is at school or asleep. He gets VERY distraught if the clothes aren’t where he left them or, heaven-forbid, they get spilled on.

He’s a little Marie Kondo in the making 😉

Click the image below to see the video!

I Love Someone with Autism

So often we avoid talking about the tough stuff. When someone is going through a difficult or emotional time, many people respond by backing away. They fear offending the person or getting it wrong or not having all the best advice or ability to “fix” the situation. I am guilty of this, even with my closest friends and family.

When it comes to autism, I want to talk about it.

The Centers for Disease Control and Prevention (CDC) says that autism now affects 1 in 59 children in the US. Including this handsome little man right here.

This number used to be 1 in a 1,000.

What does this mean? I am not here to start a debate about vaccinations, or epidemics or finding cures.

What this means is that you are VERY likely to cross paths with someone on the spectrum. This person might be in your very own family or circle of friends, at your children’s school, the neighborhood playground, or the grocery store.

Autism will touch your life.

I want to talk about some ways to support kids with autism and their families.

  • Lead by example. Your children see the way you are around people who are different.
  • Talk with your kids about autism. When they see a child behaving in a unique manner, draw on the similarities they share with your child. “Look, that boy loves the swings, too!” Your child will find their new buddy to be no less happy, fun, loving, adventurous and interesting as their other friends.
  • If a child tries to interact with my boy, he may not respond. He likely didn’t understand the question, or doesn’t realize someone is talking to him. He isn’t intentionally ignoring, and would never want to hurt anyone or make them sad.
  • This kind of social interaction is INVALUABLE for him to practice. Children should be encouraged to ask again, try again later, or “give” him the words to say. “Come get me!” “Let’s go!”
  • If a child is upset, give them some space. They are likely overwhelmed and/or sensory overloaded so too many words can heighten the situation. Offer a hug, or try counting down on your fingers.
  • Some kids on spectrum will repeat themselves over and over again. Children can respond gently with “I need a break” or “not right now”.
  • Remember that these kids can hear, feel and understand so much, even if they don’t say as much.
  • Don’t be afraid to ask questions (both parents and kids!) except “is your child high-functioning?” Who wants to go around with a low-functioning label? And don’t be afraid if your child asks forward and bold questions! Even if it creates an awkward moment, it’s the perfect moment to spread awareness and I love it.

And to support the autism moms and dads out there, especially ones with newly diagnosed kids, remember that you don’t have to fix anything. Just listen.

Autism mom and writer, Diane Dokko Kim, said it so well: “We will do the talking. There is so much in our heart that’s conflicted. We need a safe place to unpack it. You know what I really need from my friends? Just come and bring the emotional barf bag, I will fill it.”

When we sit in pain or struggle to unpack emotions, sometimes we just need a friend to sit with us.

Thank you for continuing to learn about autism, now I want you to talk about it too! Start a conversation, with your kids, your friend, your neighbor, your bartender, etc.

You are helping us spread kindness, inclusion, connection, understanding, patience, and so much love.

 

Our Tribe, I’m So Thankful for You

While motherhood has certainly been my greatest adventure, the vulnerability in becoming a mom, and an autism mom, has been a substantial challenge for me. I found myself, for the first time in a long time, in need of help. A lot of it. This has never been something I’ll easily admit, ask for, or receive.

Thankfully, I am surrounded by the most patient, kind and generous humans who constantly offer their support.

Our friends and family and friends who are family, you open your homes to our curious five-year-old to redecorate, climb on furniture, your laps and shoulders and oblige him in his relentless requests to be chased in circles.

You continually say “hi” and attempt to engage with our little man, even when you know he will likely not hear you and walk on by.

Somedays he will hear you, and see you, and you will get to see his sweet face light up like never before. You love our children like your own and you will never know what that truly means to us.

I am so thankful for you.

His teachers, behavior interventionists, doctors, therapists and caregivers, you are patient, loving and recognize the little stuff can be very big stuff for him.

I am so thankful for you.

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His BCBA, you were the first one to tell me that it was going to be OK and make me believe it. You remain so calm through the storms. You help us set goals and teach our little man how to crush them.

I am so thankful for you.

His little buddies, you have the most innocent, loving hearts. You don’t see “different”, you just see him. You may be few, but you are such an enormous light in his life.

I am so thankful for you.

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The sisterhood of autism moms and special needs parents, the connection and community I have found in you is invaluable. I know my words don’t resonate with everyone but they might with you. Hearing your stories of struggle and achievements that come in every shape and size has been a constant reminder to always come back to hope.

I am so thankful for you.

All of our friends, family and friends of the family (some of whom I haven’t seen in years), who comment, message, and share our story. You encourage, support and lift us. When you share our story you are spreading autism awareness and acceptance.

I am so thankful for you.

Charlie, aka little sis, you know best how to drive your brother completely bonkers, the exact buttons to push, but you also love, include and protect him. You aren’t afraid to get right up in his face so he sees you, so he hears you, and you would never go to sleep without giving him a hug goodnight.

I am so thankful for you.

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Our little one’s Daddy, you are strong when I am weak. You always support new methods, diets, and my harebrained ideas but aren’t afraid to question when something doesn’t feel right.

You keep him happy and safe, which isn’t easy but is our greatest purpose. You know him and you love him so well.

You stand with me, to advocate for him, to fight for understanding, and you remain there through our proudest moments and in our weakest.

I am so thankful for you.

Wilson and dad

My sweet boy. You adore the simple things. You smell, touch, taste and intensely examine. You’ve made me slow down and pay attention, whether I wanted to or not, you need me to. You’ve helped me find patience, and still I pray for more every single night.

You have forced me into a vulnerability like I have never known, and shown me all the amazingness that follows such a leap.

You’ve shown us how hard your world can be. Through frustration, pain, confusion and sleep deprivation you are still so happy in your soul. You’ve shown me this is not only possible, it’s just all a part of this wildly imperfect, beautiful ride.

I am so thankful for you.

Wilson LOVE