In the next feature in our #AuthenticAwareness campaign on the cusp of Autism Awareness Month, a mother stresses that we must share our true stories to ensure those with severe autism aren’t abandoned by the world.
By Laurie Hellman
I recently experienced one of the hardest and most emotional days I’ve had in a long time.
I am not someone who sugarcoats any part of my life, and I try to always identify the silver lining and remain hopeful in most situations. However, the truth is that there are moments where 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.
The beautiful, sunny day in Indiana began with my 19 year-old son Skyler going to his ABA center. He had been there just shy of two hours when the call came that I needed to pick him up for what they assumed were stomach issues that they weren’t equipped to handle. I’ve grown weary of repeatedly reminding them that in addition to autism, Skyler has a dual diagnosis of esophageal disease and ulcerative colitis which causes GI flare-ups. Unfortunately, this call came while my husband was out of town for work, and 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 annoyed & quite 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 these situations are frustrating, I try to view them as a typical weekend and do my best to entertain him throughout the entire day and evening. I fed him lunch, we worked on a lesson, and took a stroller ride in the 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 causing me to guess at what 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 and 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 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, 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 who can't independently do so for themselves, our mental and physical health depends on it, I am sure of it.
Laurie Hellmann is a best-selling author, speaker, podcaster, wife and mother to two incredible teenagers. Her 19- year-old son, Skyler has severe, non-verbal autism, Ulcerative Colitis and a smile that lights up any room he enters. Her 16-year-old daughter, Kendall is a witty, extremely thoughtful & fun-loving honor student. Laurie and her husband Josh live in Indiana and when she is not advocating for resources, blogging, writing her next book or hosting her podcast, she manages a pharmaceutical sales team of 25 professionals. You can connect with Laurie on Facebook @Welcome to My Life – Skyler’s World or Instagram @welcometomylife_lauriehellmann. To learn more about her publications and podcast, visit www.lauriehellmann.com
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