Our New Normal

As I sit here tonight, it hit me hard. How many things in life I thought we’d be doing so effortlessly at this phase of Jackson’s development. Without worry. Or planning. Or hesitation.

Tonight, we didn’t go to “movie night” at my son’s school because movies make him anxious.

Like freak out, meltdown anxious. Just because they’re long. And that’s if we’re at home.

No way could he tolerate a loud movie with dozens of people around. They served popcorn and drinks. None of which he’d eat. Or drink. It’s not water or milk.

He‘s incapable of sitting and enjoying these simply normal events that his peers can.

We also couldn’t leave tonight for our trip South to see family. Because it’s four hours away and most of the drive would have been in the dark.

Long distances in the car in the dark are a nightmare for him. So we’ll leave early in the morning. Hopefully. If the stars align.

I couldn’t work out with my new teacher friends this week after school because it’s out of routine for him to do anything other than go home and start our evening schedule and follow it to a T.

And those are just a few of the things that this phase of life with autism holds us back from experiencing on a daily basis.

I spent this week collaborating with his speech therapist, sped educators, and classroom teacher trying to figure out how to put a stop to the out of nowhere meltdowns that have started occurring at school because of a simple behavior chart.

How he was in no way misbehaving but would lose his mind if behaving at nearly the top of the charts all of a sudden meant in his mind, for no reason at all, that he was “a bad kid”.

He’s so perfectionistic and on the extreme end of what you’d call a “people pleaser” that even the best of remarks weren’t enough for him to feel that he was excelling. That he was good. Or great. And making everyone proud. Including himself.

It threw him into a downward spiral that he had a hard time climbing back out of. After lots of discussion, observance, and a social story, I’m hoping we’ve nipped it in the butt, for now.

Until it happens again. Or until the next autism rollercoaster hits him like a ton of bricks.

And my child is completely mainstreamed and what you’d consider high functioning. Sheesh. Some days I ask myself what that even means.

I get frustrated with myself every time I feel like we have it hard when I know in my soul it could be so much more challenging.

He can talk. He can read and write beautifully for a kindergartener, but the simplicity of learning and life tasks and communication are usually not simple at all for him.

I long for the day he can actually tell me about his favorite thing that happened at school.

Expressive communication is difficult for him. His black and white way of life and everything in it is hard for the adults in his life to comprehend, let alone his friends.

While he is accepted by his peers at this age, I’m soaking it all up knowing it likely won’t last much longer. His over excitement about life, his jumping and flapping and sensory stims will only be cute and infectious for so much longer. Before he becomes obviously “weird, strange, different” than his typical friends.

And those are already heartbreaking words he uses to describe himself.

I pray daily they’ll accept him regardless. That his happiness and kindness to everyone he meets will continue to make him impossible not to fall in love with. His zest, humor and compassion are traits that draw people to him. But will that fade with age?

I don’t know yet. I hope not. But this diagnosis has trained me to hope for the best but prepare for the worst.

Because all these things I thought we’d be past by this age aren’t past. They’re still very present. And growing more obvious. And maybe they’ll always be.

I thought he’d outgrow some of the stimming. But do I want him to? I’m not sure yet.

What will he do for sensory relief if he doesn’t jump? Flap? Spin? Sputter out echolailic phrases when his brain can’t form appropriate communication for every conversation?

He’s SO funny, though. And so happy. And so loved. But the difference is becoming more obvious by the month and each page I tear off the calendar makes me weary that first grade might be even harder, even though I planned for this all to get easier. All of it.

Meals. Homework. Trips. School. Friends and family visits. Morning and night time routines. And dare I say vacations.

I truly imagined the hardest parts were behind us, but I don’t know anymore.

The second I think I’ve grasped each obstacle another one slaps us in the face. I think that’s our new normal. And that has to be okay.

So for now I’m trying super hard to soak in the good days and roll with the punches through the bad ones. We will pick our battles while still working toward goals.

We will love him so hard that if all else fails, he knows without a doubt he is cared for. And cherished. My God is he cherished.

He is the thing I have done in life that makes me most proud. Every day.

Even when we fail. Even when we feel alone and misunderstood. Because we have an army of support behind us.

So, we’ll just keep figuring it out. I know it. At the end of the day there’s still hope.

Lots and lots of hope.

Written by, Lynn Reasons

Lynn is married to her best friend and greatest teammate as they raise their sweet five year old, Jackson, with high functioning autism. Lynn loves her new role as a school nurse and now three years in to their autism journey, is passionate about helping guide newly diagnosed families through the beginning of theirs.

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