progress + happiness

Wilson has worked so hard on tolerating haircuts for YEARS. This has been a series of small, very intentional and consistent baby steps. For reference, it began with him tolerating the buzzer to be in the same room as him. Then it moved closer. Then weeks later, it was about tolerating the buzzer to be plugged into an outlet in the room with him.

You can imagine, the actual haircutting steps were even smaller, helping him to very slowly work through his sensitivities and anxiety around the entire process.

Years ago, I would have never believed that one day he would be laughing and singing through a haircut. He has come so far!

Proud of this boy.

Sweet video via link below:

haircut progress with our happy boy!

this brave boy

Who do you advocate for?

Autism moms came together by using their voices this month to demand justice for a child with autism who was abused at his school by a teaching assistant. 

These stories are becoming too much. Children with disabilities are all too often being kicked off airplanes, out of restaurants or church, abused at school or in their own homes.  Each new story stings as much as the last, like thousands of tiny papercuts while watching the evening news.

With each one, I glance at my bouncy, blue-eyed, happy, innocent boy. How could anyone ever treat a human that way? 

With each story, I pull him in a little closer. Silently renewing my vow to protect him from the evils of this world.  

The school district failed to hold this abuser accountable, but our voices were heard. The teaching assistant has resigned.

When people come together, change will happen.

The incident prompted one autism mom, a documentary filmmaker, to reach out to us bloggers to submit a photo of who we advocate for in our lives and communities. You can watch the video via the link below.

I am truly amazed by the power of community.

I also believe that ONE voice can make a difference.

Will you tell us who you advocate for? It can be anyone; a child, a student, a relative, or yourself! Tell us one thing that you wish people would know about this person. Post it in the comments below.

I’ll start. This brave boy. I want people to know that people with autism understand so much more than they may be able to express. They are human, they feel deeply. 

So be kind, always.

link to video (you may have to copy and paste it to your browser):

https://fb.watch/3PEtKfP9gM/

my son has autism & he is wired wonderfully

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“He’s just wired differently.”

We heard this phrase often in those first months after Wilson’s autism diagnosis.  We were trying to wrap our heads around this world of autism in which our son was living.  It’s a fairly simple phrase, which was almost refreshing given the complexities of this disorder we wanted so badly to understand. We’ve since learned that for us, autism is in the moment. It’s unpredictable.  Some days it is two steps forward, and one step back. It’s phases you cannot wait to get out of, and moments you want to freeze in time.  It’s taking the long way. Routine and Repetition. Pure innocence. Unconditional love and loyalty. It’s falling down and getting back up.

Wilson is a typical boy who loves being tickled and chased. He’s into anything that involves jumping, bouncing and spinning. The faster the better. He loves music, building, blowing out birthday candles (it doesn’t matter whose birthday it is), and dressing like his daddy.  He loves anything and everything to do with pirates, trains and keys.

What makes him so different? This is where the wonderful comes in…

He is absolutely enamored with his shadow and reflection. Sometimes his mind and senses are so overloaded that he quite simply needs to be wrapped up tightly in a hug.

He says, “You’re welcome!” whenever someone on the television says “thank you.”

Scripting (reciting lines from movies, books, songs etc.) was Wilson’s first major vehicle for speaking. He could recite scenes from his favorite cartoon and sing songs before he could say “mama”.

Eventually, Wilson learned to use some of those phrases to communicate in his day-to-day life. When he wants you to read him a story, he’ll hand you a book and say “Once upon a time…” Every time he finishes in the bathroom he’ll say “Fantastic! All done!” with his arms in the air.

Much of his speech started as echolalia (repeating what he hears, verbatim.) When I would say, “bye, Wilson” he would reply, “bye, Wilson.” Echolalia is a common way for toddlers to learn and practice language, however, children with autism can have echolalia much further into childhood.  There were times it felt as though he would just repeat me forever.

While tucking Wilson into bed one night, I said “I love you” and he replied, “I love you, mommy.” Mommy. He added that all on his own. He wasn’t just repeating me anymore, he was beginning to express his own thoughts and responses.

That one single word fed my soul so much hope that night.  It seems so simple, but for him, it was a remarkable step.  I remember every single moment of that exchange, and it was nothing short of wonderful.

courage + progress

This boy just NAILED his blood draw.  If you have followed along for a while, you know this has been SO TRAUMATIC for all involved in the past.   So much so that I was able to avoid this situation for a few years for him.

This time, we had a phlebotomist come to our home. She was some kind of heaven-sent angel; whose grandson happens to also be on the autism spectrum.  She calmly talked Wilson through everything, even after I told her about his limited verbal skills. She continued to talk, letting him know everything she was doing and asking him questions about his life. He didn’t respond or understand most of what she was saying, but I know he felt her calm, kind presence.

The real MVPs today were his incredible teachers, who practiced this process with him for a few weeks. They made visuals, created incentives, and did mock-blood draws with details all the way down to putting on the rubber gloves and bandaging him up afterwards.  They made videos to show us so that we could do the entire process at home (remember, practicing across different environments with different people!)

I don’t know who needs to hear this, but things CAN get better. You must try, and then try again. Even if it’s weeks, months, or even years later. Just don’t give up.

I’m so proud of him. I’m BEYOND grateful for the village, the tribe, the TEAM this kid has at his back. And the kind angels he finds along the way.

“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

~ Maya Angelou