Our Autism Story – 2019 Update

For the past few years, on World Autism Awareness Day, I have shared a bit about our five year old son, Max, aka Supermax, and our life on the Autism Spectrum.

Today I want to do something a little different.

Today I want to write about my daughter, Mia.

Because siblings of Special Needs kids are their own kind of superhero and deserve to be celebrated.

Mia is nine years old. She loves art, animals, playing with her friends, going to the beach, and being with her family.  She is silly and loves to laugh.

She is literal sunshine in my life, and always has been.

She is also the best big sister that anyone could ever ask for.

And I am so incredibly grateful.

Max just adores her.

Last year I told you how his favorite phrase is, Where’s Mommy?

Well, that’s still the case, but a close second is, Where’s Mia?  Or, Bia, as he sometimes still calls her.

And I could cry.  Every. Time.

Because it wasn’t always this way.

When Max started to gradually slide into Autism around 15-18 months of age, his relationship with all of us changed.  He lost his words.  He stopped looking at us. 

In some ways, it’s like we were invisible to him.

And just when he should have been showing a lot of interest in his big sister, and all of her stuff, it’s like he didn’t care at all.

Mia would call his name, repeatedly, to come and see what she was doing or to come and play.   She showed him toys, offered to share with him, and always made a spot for him when she sat down to watch a show or a movie.

Most of the time, Max didn’t respond.  He just didn’t know how to. 

Guys.

This. Killed. Me.

In those early years of our Autism journey, there was a lot of change. 

We had therapy and appointments all the time.

We had tantrums and meltdowns that lasted for hours each and every day.

Our life became ruled by obsessions, rituals, and anxiety.

There was no sleep.

We could no longer just go to parties, activities, and unfamiliar places without knowing how Max would react or if he could handle it.

We separated a lot, one parent with Max, and one with Mia. 

Or we took two cars.  Or skipped things entirely because I just couldn’t stand to have my family in two different places for another weekend.

Vacations were out of the question during that time. 

We were suddenly faced with parenting two very different kids with very different needs and wants.  Balancing that seemed damn near impossible.

I had constant feelings of guilt.

It was really, really hard.

Sometimes it still is…but we are better at it now.

And through all of this, there’s been Mia.

Like a ray of light. 

Her empathy and love was unending.

She never complained.

She was never resentful.

And she never, ever gave up on her brother.

Instead, she listened and watched Max’s therapists…and learned to get him to make eye contact with her. 

Max, look at Bia.  Look at my eyes. 

She entered into his world.  She instinctively showed interest in his obsessions – everything from balloons, to washing machines, to watching things fly in the wind – and this meant everything to him.

She found a way in.

And she accepted him.  And loved him unconditionally. 

Because that is just who she is. 

Guys, there are adults in our life who didn’t know how to do this.   

So I have no idea how we got so lucky.

But I know one thing:

Special Needs siblings like Mia are going to change the world. 

Today, Mia is a huge part of Max’s life.  In fact, he has asked for her twice in the last hour since she left for school.  He knows where she is, but it’s his way of saying he misses her.

He puts things aside during the day to show her when he is home and she isn’t.

He runs to her when she gets off the bus.  They hug.

He begs to fall asleep in her room at night.

And none of this is lost on me.  The tears are flowing right now, because there was a time that I didn’t know if this would ever happen.

If he would ever really see his beautiful sister.

If he would know how much she loved him.

If he would love her back in the way she deserved to be loved. 

This is more than I could have wished for.

And even in the rare occasion when they fight…I relish in the “normalcy” of it.

There is so much beauty in this life.

Mia, when you are old enough to read through your momma’s blog and all of her posts, I hope you read this one.  And I hope you know that you are so loved.  And that you mean so much to our family.  And that we are so grateful and proud to call you our daughter.  ❤️

 

Friends, I once again thank you for allowing me to interrupt this space and share what’s in my heart.  You all have been nothing but supportive over the years and I am so grateful.

April is Autism Awareness month, so feel free to share.  To read more of our story, check out these posts from other years:

Our Autism Story 

Our Autism Story – 2018 Update 

Our Autism Story – 2020 Update

Much love to you, friends.

*Photo credit for the tree farm pictures goes to Lindsay McGoldrick Photography