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Knowing something is coming doesn’t mean it gets easier to accept. Death. Taxes. Stripping your autistic child of their rights and becoming their legal guardian into adulthood.
We started this process months ago because Jordan turns 18 in April. By the time Jordan was 13, though, we knew this was something that had to be done. We tried not to think about it much. We didn’t want to. Maybe Jordan would progress to the point where we wouldn’t have to do this? We knew that wasn’t going to happen, but a parent never stops hoping.
But time does what time does and with Jordan on the brink of becoming a legal adult, we have to go to court to take guardianship of our son.
Jordan may be physically 18, but he’s mentally about 7 or 8. He’s still embarrassed around girls. He still watched shows meant for little kids.1 He struggles with abstract concepts, and by “struggles,” I mean he cannot grasp most things he cannot see or touch. Why and How are almost completely beyond him. Jordan can ask “Why?”, and he does, constantly, but unless the answer is extremely basic, “Because Mommy said so” or “Because there are no more cookies,” he will not understand you. Answering a why or a how question is something Jordan simply cannot do most of the time.
Obviously, Jordan will not be able to make informed decisions about his medical care. Or anything else. Ever. He will always be a child trapped inside a man’s body.
That means we have to take the legal steps necessary to strip away his rights as an adult so we can continue to care for him. Is it a good thing we can do this? Yes. Is it necessary? Yes? Does it still feel like a crushing loss, almost as terrible as first learning Jordan was autistic when he was just two years old?
Fuck you, autism.
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By law, Jordan is required to have a legal advocate appointed. Basically, Jordan gets his own lawyer who will ensure we are not taking advantage of him. Guardianship is not just for autistic adults. It can, and generally is, also be for senior citizens no longer of sound mind. Conniving caretakers do all sorts of shady shit in these situations. The same with kids with an inheritance, I suppose. People are gross.
Still, the idea of having a lawyer come and “protect” Jordan from us, even as a legal formality, was nerve-wracking. We didn’t know who this person was or if they had any experience with autism. Some autistic kids “look” autistic. Many do not. If you’re unfamiliar with neurodivergent people, you wouldn’t necessarily understand what you’re looking at.
She came in and explained who she was and why she was there to Jordan. Jordan nodded and said “OK” whenever prompted, and I died a little inside each time. Jordan will, in fact, answer yes or no questions and respond to “OK?” even if he has no idea what you just said. It’s mimic behavior, and you have to know Jordan to know when he understands you or not. How he responds, the tone, and the strength of his voice are what you have to listen for.
I desperately wanted to tell the lawyer that, despite his answers, Jordan didn’t understand a single thing she was saying. It was too abstract. Going to court and giving mommy and daddy guardianship? That might as well have been in Latin to Jordan. But I couldn’t say anything at all because I was worried how that would sound coming from me, the parent looking to take away my son’s legal rights.
This is not a situation I was accustomed to. I have never worried about anyone anywhere doubting our commitment to Jordan’s welfare.
Once, when Jordan was maybe six or seven, he tripped on the Fourth of July and whacked his face on a table at an outdoor fireworks display. Jordan was clumsy when he was younger. Dangerously so. We had to watch him like a hawk climbing up and down stairs, until he was about five, something three-year-olds can do with ease. Fortunately, he did not fall down a flight of stairs, but after his spill, he did have a black eye and needed stitches on his forehead.
A few days later, Jordan was in summer school (or rather, Extended School Year for special needs kids), and a teacher who did not know us was alarmed by Jordan’s injuries. She was ready to call Child Protective Services when three of the paraprofessionals who did know us stopped her. They explained who we are and that there was zero chance we had hurt Jordan. You see, we had spent so much time in the school and around Jordan and his class, we were a known quantity. Jordan’s parents? Abusive? You must be joking.
But now I had to put the fate of my family in the hands of a total stranger and hope she didn’t mistake Jordan’s non-answers for actual comprehension.
After several minutes of yes and no questions, the lawyer finally FINALLY started asking more abstract questions, and there was no longer any doubt about Jordan’s capacity (or lack thereof) to care for himself.
Then we pivoted to questions about what Jordan’s day is like and how much self-care he’s capable of. He can shower, mostly, on his own. Go to the bathroom, brush his teeth with reminders, put on his clothes, etc. All good. Make his own food? No. Cross the street safely? Not at all. Take public transportation by himself? Not if we ever wanted to see him again.
In a contained environment, Jordan can take care of his most basic needs. Outside, he needs supervision. He cannot live on his own and will never be able to. That’s the totality of it.
It hurt so much to say that aloud. It was sticking a knife into my heart. It’s not that we haven’t had this discussion before, but this was stating it for the record. This was official. This was “real.” This was final.
Sure, if Jordan were struck by lightning tomorrow and woke up neurotypical, we could undo the guardianship. But that’s never going to fucking happen, is it? This is Jordan’s life now. He will never go to college. He will never get married. He will almost certainly never have a romantic partner (what seven-year-old goes on a date?). He will never live his life on his own terms. He will forever be the ward of someone else. For now, it will be his parents. Later, possibly his sister. Eventually, an assisted living facility.
We will have to make all of his decisions for him. Where he will live. Where he will work. What time he gets up and goes to bed. Very little will be in his control. As an eternal child, he won’t really care. But it’s still a tragedy. A life stolen by autism and I will be signing the paperwork in two weeks to make it legal and binding.
Fuck autism. Fuck autism forever.
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Yo Gabba Gabba, Dora the Explorer, Dude Perfect, Power Rangers, The Fresh Beat Band, you get the idea.









