Beyond tantrums and meltdowns, through tunnels of misunderstanding and sleeplessness, on the other side of isolation, there exists the beautiful side of autism. I’m certain nobody experiences it the same but we are fortunate enough to get views of it, probably more often than many.
I’ll often hear or read the phrase “and then autism reared its ugly head…” It’s used in many different lights and contexts, but overwhelmingly it conveys something misunderstood, difficult, and largely undesirable unexpectedly surfacing.
I get it. Really, I do. I am very familiar with the initial feelings at hearing the word for the first time. Autism. It almost echoed in my ears. Our son has autism. That was the first time “autism reared its ugly head.”
There are the sensory issues that cannot be communicated which end in meltdowns. There are anxieties and rigidity that can both turn an entire day upside down for unknown reasons. There is the lack of being able to do many things in life. All of these are examples of the same, less than perfect side of autism.
Getting to this point…
As of writing this, Declan is four and a half years old. He has been autistic for…well, four and a half years. Funny how that works. We have known he’s had autism for over three years now.
Through these three years we have had challenges. Every parent does, on or off the spectrum.
We have made it through baby Declan and his absolute lack of sleep. A collective eight hours of sleep comprised of three naps in a twenty four hour period. For a year and a half.
We made it through an autism diagnosis, beginning and stacking on appointments, fitting a full load of pediatric therapy along with commutes in to our schedule.
We survived the birth of little brother. Barely. On top of that another year and some change of sleeplessness and an existence focused so intensely on purely surviving that much of the year is a blur.
We’ve made it through schedule changes, therapist changes, holidays and all of the unexpecteds and unforeseens along the way. Throughout it all it becomes so damn easy to focus on the challenges. On the difficulties. On the parts of the life of an autism parent that just suck. It’s stressful and largely thankless.
It’s not as easy to see the positive aspects. It takes effort, partially because maybe the good things don’t happen with quite the frequency as the bad. Maybe because sometimes we think of them as “good” and “bad.” Regardless, oftentimes it takes a concerted effort to see the beautiful, fulfilling moments.
This last week provided us with one such moment and it was almost overwhelmingly incredible.
Minnesota has long winters. This last winter for us was particularly horrible. It basically began in November of last year and ended just a couple weeks ago. That’s approaching the six month mark way too closely. It was very, very difficult. It was defeating. That attitude was definitely penetrating other aspects of life and we were all a little worse for the wear.
We moved in to our home just over a year ago and when we did, we were really excited to utilize our back yard. Having two little boys necessitated having a backyard to play in. We couldn’t wait for the snow to melt, do a little clean up and let our boys run free and explore the area they’d own and play in. The area that would be a defining aspect of their childhood.
We were really looking forward to spending a lot of time there, making memories.
Well, turns out that last year Silas was just too little to really do anything back there. There was a significant amount of work to be done to make it little kid friendly such as digging up a rose bush and cutting down dead tree limbs. Also, he just didn’t have much interest.
Okay, no big deal. Next year.
It also turns out that last year Declan was an absolute no go for the back yard. He wanted nothing to do with it. It made him anxious. When we’d bring him back, all he wanted to do was to come inside where at least he had all his stuff. He didn’t spend more than a handful of minutes there all of last year.
It was heartbreaking. It brought in to a new light the concept of limitations. It made me question the future. It made me feel terrible that I couldn’t help our son do something as simple as just BE in the backyard of his home.
During the last few months while we’ve been awaiting spring’s arrival we have been thinking how we were going to help Declan get in to the back yard spirit. We were probably going to take the little bits at a time with overly cautious preparation approach. Maybe couple this with a social story about how playing in your back yard is awesome.
We didn’t really get the opportunity to enact any of that because this past week, the beautiful side of autism reared its perfect head and Declan took Christa’s hand, led her to the back patio door and made it known that he wanted to go out. Outside in his very own back yard.
We stopped eating our lunch mid bite and ventured out. Declan, with his alphabet-themed toy of the moment in tow, Silas with his flitting basketball obsession, carrying his ball, or as he says, “bas•kwit•ball” and Mom and Dad trailing in utter amazement.
Declan explored. He touched trees, climbed in the flowers and plants and ultimately ended up setting up shop right in the dirt. He was absolutely filthy in a matter of minutes and it was beautiful. It was amazing. It was so incredibly unexpected and out of the blue and we loved every moment of it.
The beautiful side of autism here wasn’t that Declan went out to play in his back yard. The beautiful part, for me, was the shattering of expectations and boundaries that had been there. Everything in our minds concerning the back yard was so big and almost insurmountable that it felt daunting.
Many aspects of autism and of parenting are like that. Potty training, sleep training, changing shoes, they’re all huge deals. Until they’re not.
Declan decided that the back yard wasn’t a big deal. He went out and played. Our son with autism played. In the back yard.