No one could have prepared me for 18. Not for how the world would react. Not for the emotional toll. Definitely not for the amount of paperwork and tasks that would be required or the amount of time processes would take.
When we first received the diagnosis for Z, I always talked about not receiving a manual. Having to figure out everything on my own. Having to spend nights online searching What is Autism?, What is the best therapy?, What is ABA?, How will Autism change our lives? What will Autism cost? And I always felt there should be some introduction to it. Some step-by-step to ease your spinning mind. I did not even consider that there should also be a separate manual for the big 18. Until now…
I knew it was coming and that there were things that needed to be done. I researched these a couple of years prior and felt we had time. Conservatorship, SSI, medical changes, school changes. The list goes on and on.
No biggie though. As special needs parents we are used to paperwork (many times the same paperwork over and over again). We are used to not having a clue what we are filling out and spending hours on the phone trying to complete what is needed. This is something we’ve been doing for 18 years. But the new documents were more than I expected.
The sheer mind games played on parents is something I didn’t expect. You see, up to that day, I cared for my son. I handled everything as his mom and caretaker. Medical, school, hygiene, nutrition, booking appointments, managing meds, etc. No one questioned it. No one questioned how much I was doing and why I was doing it. No one blinked an eye.
Until that day.
Z turned 18. What should have been a day of celebration was actually the start of the biggest emotional toll on me.
Typical families look forward to 18. Your child is now an adult, can handle their life. They are usually looking forward to college, to a job, to moving out. These parents complain about their “empty nest”.
I’m not saying I thought this would be us. I knew our 18 was going to be different. I knew he would continue at the school he was at until 22, no college in sight. I knew the only job he would get would be the household chores we would work years on mastering. I knew he would still be at home (possibly for life) and that we would always have a full nest. I had already come to terms with this. I mourned the life we could have had at this point but was looking forward to having Z around and enjoying him longer. I felt like we actually had it better than typical families because we would always be together.
But what I didn’t expect was the world not being on the same page. The world moved like Z was a typical teenager turning 18. He’s responsible for himself, can do everything for himself and should contribute to society as an adult.
One by one, agencies would refuse to help me. The same people I worked his whole life with would simply say “He’s 18. We can’t talk to you. We need to speak with him.” Knowing full well he was non-verbal, on meds for behavior and at a 1st grade level. But it didn’t matter. The world saw him differently. The world did not see the amount of care Z received the day before he turned 18. The world didn’t care.
And I took it personally. I felt everything I had been doing since he was born was taken for granted. I felt like I had no worth and, if I’m honest, a bit like a criminal. Because the questioning became very pointed. Very pointed at abuse, at neglect, at criminal intent. Why did I want conservatorship? Why can Z not do A, B and C? Could he do A, B and C and I was lying about it to harm or take advantage of Z? Was he really non-verbal or was I hiding something? Could he care for himself and I was stopping him from being independent? Did he want to vote? Could he budget his money? Did he want a girlfriend and I was prohibiting this? Why did I want to take away his rights?
This shift absolutely floored me. The day before he was 18, there was no question. School and medical documents agreed with his needs. But the day he turned 18, suddenly we didn’t agree? Suddenly we questioned the last 18 years? Suddenly I was no longer the loving mom and instead was a potential villain? Z wasn’t a well cared for son, but a potential victim?
The rational part of me knew this was not about Z or I. This was about other people that were doing harm and had ill intent. All of this was to catch “those people” and protect “those victims”. And I agreed. And I knew this was just paperwork. Everyone knew it was “just paperwork”. They agreed this was black and white and completely appropriate for Z.
But it still hurt.
And this is what you are not prepared for. This is what turning 18 means to families like ours. To the world, the “child” is suddenly an “adult” overnight. The parents (who are already stressed and wore thin) have to prove to the world they are still needed as parents. Their hard work is still needed. Their advocacy and unwavering belief in their child is still needed. They matter.
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