Yesterday was one of the hardest and most emotional days I’ve had in many months.
For those who have read my book and follow me socially, you know that I don’t sugarcoat any parts of our life, but I try my hardest to always identify the silver lining and remain hopeful in most situations. But the truth is there are moments where the fear, sadness, anger, uncertainty and worry take over (and of course guilt for admitting those feelings) and push the strong, resilient and optimistic mom to the side. Yesterday was one of those moments.
Skyler had been at his therapy center just shy of two hours when the call came that I needed to pick him up for what they assumed was some stomach issues that they weren’t equipped to handle. I’ve grown tired of repeatedly reminding them that in addition to autism, Skyler has a dual diagnosis of esophageal disease & ulcerative colitis which causes GI flare ups. So, because this of course occurs when my husband is out of town for work, I quickly scrambled to reschedule and make alternative arrangements for some work meetings I had and set off to get him.
Considering that this was the third time this year I’ve been asked to come for Skyler for the exact same reason, I was a bit annoyed & pretty confident that history would repeat itself - meaning he would get home, full of smiles and show no signs whatsoever that he wasn’t feeling well. That’s exactly what happened.
Although those situations are frustrating, I treated it like a typical weekend and did my best to entertain him throughout the entire day and evening. I fed him lunch, we worked on a Spelling 2 Communicate lesson and took a stroller ride in the beautiful 70° weather. However, that only managed to take up two hours of time. The excitement of ‘cutting school’ seemed to wear off quickly and he became more and more agitated.
As with most weekends, when we run out of ideas on how to pass time, Skyler seems to display irritation, boredom, hunger, pain or being tired with the same aggressive behaviors and gestures - constantly leaving me guessing what exactly he wants or needs.
He guides me into the kitchen, opens the refrigerator or enters the pantry pointing at various items but when I get those things out, he puts up his hand and shoves them away as if to say, ‘that’s not what I want.’ He paces room to room and throws or swipes every object he sees to the floor. He bangs on walls and doors and hits. Oh man does he hit - anyone or anything and tugs on my hair any opportunity he gets! Nothing I say or offer seems to provide him any relief nor does it solve the mystery of what he’s trying to tell me.
Usually, I’m equipped to go 15-20 rounds with Skyler, following behind him and continually guessing, ‘Are you too hot?’ ‘Are you cold?’ ‘Are you hungry or sleepy?’ or asking him to ‘pick it up’ after every item is thrown to the floor. However, yesterday just felt different. I was emotionally spent. For the first time in a long time, I completely gave up on trying to crack his secret code.
Exhausted from repeatedly being pulled room to room and growing more irritated with each forceful smack he doled out, I locked all the doors - internal & external and watched my 19-year-old son repeat his loop through the house, creating a cyclone of damage with each step. With no energy left to stop him, redirect him or have him help pick everything back up, I plopped down on the ottoman, feeling defeated.
I very rarely cry in his presence, but visions of our looming future flooded my thoughts. Is this what every day from age 22 and beyond is going to look like for us? I was overwhelmed.
Only three years remain in our daily routine – one that we all have grown comfortable with before his age dictates the end of eligibility for attending therapy centers or school and receiving traditional support or services. At this point, there are very limited options for day programs or caregiver resources where we live for someone at Skyler’s level of autism severity.
As I sat there, head in my hands with tears rolling down my cheeks, I wondered if Skyler could see or feel how sad I was about being unable to communicate with him and not knowing how to help or calm him. I was also curious whether he would even demonstrate he cared.
Moments later, Skyler walked up next to me and smacked me hard across the back. I looked up at him in disbelief and he wandered away without even a glance back in my direction.
These are the days and events that remain the most difficult for me to overcome. Sure, I move past the challenges of yesterday, put on a smile and prepare to identify the joy in all that today has to offer, but the sadness and frustration leave tiny scars behind.
I share this ‘day in our life’ not to complain or discourage others who are traveling this autism journey several years behind us. On the contrary. I hope stories like ours motivate and inspire changes to be made that ensure autistic adults like Skyler aren’t abandoned by the world in their young 20s.
We as caregivers must demand more support for ourselves and our autistic loved ones from both state and federal levels. As we provide lifelong care for those that can't independently do so for themselves, our mental and physical health depends on it!