When Autism Guardianship Happens

He sat in his room happily watching a Barney video on YouTube, as he usually does when he has downtime. Downstairs, a thirty-minute virtual court hearing had just determined his future. He didn’t know this and wouldn’t understand it even if I tried to explain. As of today, he can no longer independently exercise his right to marry, vote, personally apply for government benefits, have a driver’s license, sue and defend lawsuits, manage property, determine residence, consent to medical treatment, make decisions about social environment, or purchase a gun, amongst other rights we all enjoy as typical consenting adults. He is Dylan, my sweet and innocent 18-year-old-son who is on the autism spectrum. After an extensive process where three different medical professionals interviewed him (and us), as well as an interview with his very own court-assigned attorney, my husband and I are now his legal co-guardians. And exhale.

It’s not like I didn’t know this day was coming. Just like every other aspect of Dylan’s life, his father and I made sure everything was in order and ready as needed. The pandemic then arrived, wreaking havoc and frustratingly delaying the process by seven months. The fear that something could happen to Dylan, and we would not be able to help him, given his new adult status upon turning 18, became a daily source of increasing anxiety.

Countless doctor’s appointments, IEP meetings, evaluations, and therapy sessions, would prep me for today. Or so I thought. I am used to dealing with the ridiculous amount of work it takes to get things done (and done right) for my son to receive everything he needs. So much so, that 18 years in, I can usually go through the motions numbly, and any pesky emotions that arise take a backseat. Who has time for them when you are in attack mode at all times? Guns blazing? That’s me. But today, when the judge rattled off all of the things Dylan gives up, I choked up, and the tears freely rolled down my cheeks. It remained that way for the rest of the day.

I know this is for the best, obviously. He now legally has our continued care, guidance, supervision, advocacy, and safety net. As a parent, I know this is the expected modus operandi until children become adults and control their lives. No parent expects to spend a lifetime in toddlerhood. Believe me when I tell you, 18 years of The Wiggles is not for the faint of heart. Most days, it does not even faze me. It is just business as usual. Days like today remind me that none of this is “normal.”

“Dylan performed during examination, consistent with a preschool-aged child. Autism is moderate to severe and mental retardation is moderate with an estimated IQ in the range of 40 to 55,” wrote one of the neurologists who examined him. A correct assessment, of course, but still brutal to read after all these years. Dylan cooperated with each doctor interview showing curiosity and a gentle spirit, unaware of the reasoning behind it all, but mostly just happy to see his reflection back with the Zoom calls. His smile tends to be the silver lining. As parents, only we are affected by knowing he probably would have now been completing his freshman college year. Or, at the very least, had the choice to do so. He remains peaceful and content, rewatching ABC and 123 videos for the thousandth time. I said goodbye to the milestones (prom, sports, graduation, marriage, and grandkids) I dreamed I would experience with him a long time ago, but it doesn’t make it any less painful. Not then and not now. I realize this isn’t about me, but I do have a right to feel that loss. For those of you who love to gang up on those “autism parents” who “dare” express their emotions over this type of situation, let me very kindly and eloquently tell you to please, f*ck off. No one cares for and loves Dylan more than I do. I discuss my guardianship experience today (and always) because it is an important topic. Parents need to be prepared. I will not be silenced by anyone discouraging talk (a disappointing and current trend) about the realities lived by those with profound autism and their loved ones. Also added by one of the examining doctors, “Dylan, if he were ever left to be an unsupervised young man, is someone who could be easily persuaded to engage in negative consequences. He is a high risk for victimization, exploitation, or harm by accident.” Unfortunately, this assessment is correct. How do I sleep at night knowing my adult-child can be in danger any time he is not with me?

This isn’t a case of us not “reaching for the stars” and not believing the “sky is the limit.” Dylan’s strengths are there today, and continue emerging because we stop at nothing from giving him the world of opportunities to excel. The reality of his autism is simply that he needs lifetime care, and there is no autism feel-good Hollywood movie, TV series, podcast, or book that can change that. Keywords: HIS autism. Not Joey’s. Not Steve’s. This is about Dylan’s autism.

Have you ever read the children’s book, Love You Forever? Chances are, you have. “I’ll love you forever, I’ll like you for always, as long as I’m living, my baby you’ll be.” So lovely and even true-ish. Except for the part where the mom gets old, and the son sings that song back to her. And the part where the son then sings the very same song to his daughter. I realized pretty early on that I no longer enjoyed that book, and it still breaks my heart to even see it on display.

Today I painfully relived the path we were forced to take and the cards we were dealt. I am grateful for Dylan’s health otherwise, and for all he has taught me these last 18 years. I am also thankful the court agreed with what we already knew; we are the best fit to continue Dylan’s care. One examiner writes, “…it is noteworthy to state that he has remarkable parents, who notably have done an extraordinarily excellent job of taking good care of him, across all domains, including offering him the highest possible quality of life available.” Amid this rollercoaster, I felt humbled to read those words! I am a long way from that bright-eyed mom who, naively and excitedly, walked into her house straight from the hospital with a tiny sleeping baby in a car seat. This journey has knocked me down repeatedly, but never for too long. I have the will, and have always found the way. For now, I will continue assisting with toileting needs until he can finally do it on his own. I will diffuse tearful meltdowns when the internet stops working, and make sure his favorite Fisher-Price maracas always have working batteries. I will carry on as usual until I can’t any longer, and I am forced to discuss new living arrangements when I become too old to care for myself and others. Who knows, that might even mean we all go into adult living facilities together. I know that I will continue to be Dylan’s fierce advocate, as long as I’m breathing. He has all of me, forever.

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