This is Not What I Expected Either

Evan Miluwakee (1)

“He’s 6 years old, he should be able to walk the block without complaining or flopping.”

“Trick-or-treating should be fun, not stressful.”

“We should be able to walk through Target together and not have to put him in a too-small cart so he doesn’t get away from us”

“Field trips should be such a fun day away from school….”

These thoughts either go through my mind or they cross my lips far too often.  Combine our lack of child rearing experience (prior to E), our expectations, our own childhood experiences, and our observations of other children of similar age to Evan.

Mix them all together and then line them up against who E is and how he is wired.

Evan loves to socialize. He loves to say hello and get a response out of strangers and loved ones alike.  But…he likes to do that on his own time and on his own terms.

So, we find ourselves planning an outing where people familiar to Evan are going to be present.

We think, he is going to love this, he loves ____________ (enter name here).

We tell Evan about this excursion before we leave. He asks with anticipatory anxiety, over and over, if we can leave, if we can go to the exciting place.

We get to said place, and things will change rapidly.

Evan will get a dazed look on his face, and he will push past the familiar people who are so eager to interact with him.

He will exhaust every corner of the house, yard, etc- looking for the toys he loves. Or looking for things that make noise, music, anything of that nature.

The content, giggly boy that we left the house with is now very reserved, and even agitated.

I might suggest to him to go to a room where his favorite snack is, and he pushes my hands away in a huff. He might even drop to the floor.

Then he looks up at me with those sparking blue eyes and says, “Sorry mommy. I’m sorry mommy.”

I know your heart just broke. Mine often does too.  But he does say “I’m sorry” for many different reasons and emotions.

It is a go-to phrase for him right now when he feels any type of discomfort or confusion.

But in those moments, it feels like he is saying,

“I’m sorry mommy. I’m sorry that I disappointed you. This is not what I expected either.”

Ouch.

He wanted to roam the house freely without abandon. He wanted to talk to people on his own terms, not when they wanted to talk to him.

Social cues are foreign to him.

Even when explicitly taught, it is tough for him to remember that you walk into someone’s house and greet the host before walking further.

Evan often will make a beeline right for the bedrooms. Which of course is quite rude and not appropriate.

But to E it is the gold mine of fun! Fans, alarm clocks, remotes, you name it.

The past few months have felt very hard but very necessary in my journey as Evan’s mama.

I have picked him up off the ground more times than I would like to admit.

I have been smacked, ignored, and I have been hugged harder than I have been our whole relationship. I have waited him out for 30 min + when he has refused to do something I asked.

We are closer than we have ever been.

I think this is due to several things.

A huge factor is my dear husband’s involvement.  We are a team when it comes to doing what is best for Evan.

The summer proved to be one of the toughest for me in all my 39 years.  Evan went through a medicine change for his seizures and with that came a language increase but also a huge behavioral increase.

My daughter Melody is a spirited, amazing, pain in my rear most days. Handling Evan’s struggles are doubly tough when she is screaming that I gave her the wrong color plate.

Todd has made sure to give me ample opportunities to get out of the house when I needed to.  He didn’t get upset or try to fix it when I cried. He was just there.

When things kicked up again during the start of the school year- he came to me and said he felt like we needed to be firm and consistent with Evan but we needed to be as positive as possible.

Keep things light, avoid getting into a battle with Evan, because the negative is as reinforcing to him as the positive.

Actually, it is probably MORE reinforcing. Unfortunately.  Negative reactions are so much more predictable.

One of the biggest shifts for me, has been my understanding of Evan. It grows deeper every day.

I am trying really hard to put myself in his shoes. I am swallowing my pride more, and not feeling crappy about it.

It is okay to say no to a birthday party because I know it will be super stressful for both of us. Even if that means he misses that peer opportunity.

Even if that is one more playdate that won’t be scheduled. The strain that it causes him, and our relationship is not worth it to me.

But it is also okay to take risks.  Try walking through a grocery store with E without a cart.  Try going to a friend’s house that has the motherlode of V Tech toys.

Our expectations might not always jive.  Our experiences are going to be completely different.

But it is about trying to meet him where he is. While also giving myself a break for not always finding that easy.

Yup, I’ll work on that this week…and next.

And for the rest of my time as Evan’s mama.

Written by, Erin Putman

Erin is a mama-teacher-wife who is helping to raise two amazing handfuls she calls children. You can follow her over at www.musingsbymama.com.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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