Preparing for Tomorrow: Adult Care Decisions for My Non-Verbal Son

My non-verbal son is 13 years old. Throughout his life, I’ve been able to see a lot of growth, change, and answered questions. Things I had no clue about when he was a baby have become part of our lives today and our lives today are nothing like I pictured they would be.

It’s true. Few, if any, of those imagined scenarios ever manifested themselves the way I envisioned. As the father to a two-year-old little boy with quirky habits, the only thing I knew for certain was that nothing was certain.

Experts treated our futures like Forest Gump’s box of chocolates. Shrugs and hopeful words were offered and, while it may have been done to provide hope, it only caused more confusion.

Nothing was concrete and “anything could happen.” Predictions don’t exist when you have a child like mine. Whatever came next was about Lucas. His progress was his own. The milestones he made weren’t my successes, just as the missed ones weren’t my failures. They were part of his journey. I could walk with him on it, but I couldn’t carry him.

Events that were yet to unfold all seemed like doom and gloom in the doomiest and gloomiest sense of the phrase. Non-Verbal? What could that mean? What would that look like? How could a boy just simply never speak?

I couldn’t fathom it. I used to think, “When he gets to be old enough, if he’s still not talking, I can just ask him why he’s not talking.” Seriously. I thought that.

With what little knowledge I had of what it could mean, I saw non-verbal as some sort of locked door that would rob me of a relationship with my son. With no experience or context for these imagined situations, I could only envision the heartache, loneliness, and work that would come from raising a child with autism who had no verbal language.

Anyone who has heard me tell a story about Lucas knows what’s coming next. It’s an admission that nothing turned out to be as bad as I feared My son is wonderful, and our lives have few moments of heartache and none of loneliness. He’s a sweet and caring kid who might not express himself in the ways that others do, but he’s a part of our family. We love him more than anything.

Keep in mind, this is all taking place in, what I would once call, the worst-case scenario. This was the exact life I feared. Not talking at 13? Dump me out the window. The world would end.

Spoiler alert: World still spinning. Non-verbal kid’s awesome.

With all that enlightenment, you’d think I’d have learned my lesson much earlier. Tomorrow is coming and the future events never turn out the way you think, right? I know that now.

So why would I still get that sinking feeling whenever the idea of adult care, assisted living, and group homes came up?

What made me shudder, even just a little bit, when I saw a group of special needs adults on an outing to the supermarket? Why was my son’s potential life still causing me underlying conflict, even when I’ve seen how bright even the scariest futures are when we arrive there with love?

Cards on the table – my son will require some form of care for the rest of his life. I accept that and know that my job now is to teach him as much as I can while accepting the things he might never be able to learn. I want to make life easier for him and whoever is helping him out when he’s a grown man. The idea is to give him as much independence as possible.

However, reality is reality and the question of who that person might be is real.

There are two trains of thinking for this and both can be stated with the same passion. Both have their merits, but only one goes with what I’ve discovered has been most beneficial for Lucas…and that’s doing what’s most beneficial for Lucas.

The first is to say “no.” I stand on a soapbox, shielding my son from the world, and declare that I will be his lone caregiver until I croak. Digging my heels into the ground, I refuse to even entertain the thought of allowing him into a special needs adult living arrangement.

Some people do that, and, for those people, it might be the best choice. Honestly? I might end up being one of those people when the time comes. I just can’t say it for sure yet. That’s because he’s 13. He’s not an adult. We’re not at that point yet, yet that’s kind of the point.

It’s the second train of thought. It’s the same train and track that I’ve been riding since his diagnosis. It’s the idea that whatever Lucas needs, Lucas will get.

What if he grows into a more social person and wants to be with people his own age? What if there is a program he loves and people he wants to spend time with? What if there are programs, events, and trips that will make his life more well-rounded than it would be just with me? Would I say no out of personal fear or misplaced responsibility?

My responsibility is to take care of my son, but that doesn’t just mean physically. It means helping him live an enriched life, even if it stands against what I personally want. It’s how he ended up with a communication device when I desperately hoped for verbal language. It’s why we put him into the school he’s in and why his birthday celebrations are low-key. I do what’s right for my son at each turn.

When the day comes to make that adult decision, that’s what we’ll do. That day isn’t today, and he hasn’t yet grown into the man who will be affected by that decision. I don’t know what tomorrow will bring, so I can’t say anything for certain either way.

When it’s time, there’s only one question. Does it benefit Lucas? If so, that’s what we do. That mindset hasn’t done us wrong yet. In a world of uncertain futures, that’s the one thing I can say for sure.

This journey with my son has taught me that love, patience, and a willingness to adapt are the keys to navigating the unknown. Our path may not look like what I once envisioned, but it’s our path, and it’s perfect in its own way. To all the parents facing similar uncertainties, know this: your love and dedication will guide you, and your child’s unique journey is beautiful just as it is.