Who Will Know Them?

Yesterday, I read a story about a mother in her late sixties who was arrested after allegedly giving medication to her two adult sons, both of whom have severe autism, and taking medication herself in what authorities say was an attempted murder-suicide. All three are expected to survive.

Her husband had died the year before. She was caring for their sons alone.

I don't know enough about this family to know everything that led to that terrible moment, and nothing makes what happened okay.

But I haven't been able to stop thinking about them.

Not only about those two men, but about their mother.

Because there is a question parents like me carry that doesn't get talked about nearly enough.

What happens to our children when we get old?

Not when they get old.

When we do.

I will turn sixty next year. My dad died at seventy-four.

I don't say that because I expect to die at seventy-four. I hope and pray I have many more years than that. But fourteen years doesn't sound as long to me as it once would have.

And there are some things Matt and I think about more often than I probably admit.

What happens to Lily if someday neither of us is here?

Who will know that looking at pictures and watching videos of her family aren't just things she likes to do? Family is her world. Who will tape up a beloved book or search for another copy when it can't be repaired anymore? Who will understand how easily she becomes overwhelmed? Who will know how deeply frightening anything medical can be for her? Who will recognize the little things she can't explain with words?

Will they cut her food small enough so she doesn't choke? Will they know her cup needs to be filled with half water and half apple juice because that's the only thing she will drink?

Little things.

Except they're not little when you're the person who depends on someone else knowing them.

There is another part of this that scares me even more.

Lily can barely tolerate having her teeth brushed. Over the years, we've figured out what works. I brush while I count to ten, and then she gets to brush however she wants while I count to ten again.

It isn't perfect dental care.

But it's what she can tolerate.

Anything more involved medically has required anesthesia, and that creates an entirely different fear for me.

Who will understand someday that forcing Lily through a procedure while she's awake isn't necessarily the answer? Who will stop and ask whether appointments can be coordinated, whether several things can be done at once, or whether there is another way to accomplish what she needs without terrifying her?

Who will know when to say, "This isn't going to work for Lily. We need another plan."

Sometimes knowing my child isn't about remembering what makes her smile.

Sometimes it means being the person in the room who knows her well enough to say, ‘No, this isn’t going to work for Lily.’

And then there is Leo.

Who will understand what he's trying to communicate when he can't get the words out? Who will recognize frustration before it becomes something bigger? Who will understand that behavior may be telling them something he cannot?

Will they read him a board book every night at bedtime? Will they make sure he brushes his teeth correctly? Will they hold his hand if he reaches for theirs?

I worry about all of my children, just in different ways. The twins are far more independent and their futures will look very different from Dasha’s, Lily’s or Leo’s. But that doesn't mean I never think about the challenges they may face too.

Dasha still needs support, and I will always worry about her safety and who will be there for her. But compared with Lily and Leo, she is more independent, more able to communicate what she needs, and has always seemed more resilient when life changes.

I worry about her future too.

It just feels different.

If I'm completely honest, thoughts about Lily—and closely behind her, Leo—can make my stomach hurt.

I think that's because my fear isn't simply about where they will live.

It's about who will know them.

We have six children, several with disabilities or diagnoses of their own, and their needs vary tremendously. We also have nieces and nephews who love our kids.

And maybe some of them will have important roles in Lily's and Leo's lives long after Matt and I are gone. I quietly pray that they will.

But their lives belong to them, too.

I don't want any of them reading this and hearing an assignment I am placing on their shoulders. I'm not asking one person to become us. I'm not expecting someone to give up the life God has given them to take over ours.

Still, if I'm being completely truthful, there is a prayer underneath all of this:

Please, God, let there always be someone who knows them.

Someone who notices.

Someone who shows up.

Someone who loves them enough to make sure they're okay.

The statistics tell me Matt and I are far from alone in thinking about this.

There are an estimated 5.4 million families in the United States caring for someone with an intellectual or developmental disability. About 72% of people with IDD live with a family caregiver, and more than one in four of those caregivers is already over 60.

And there is another generation right behind them.

Many of these are parents who have been doing this for decades. They're now in their 60s and 70s, still caring for adult children who may need help with everything from meals and transportation to bathing, communication and staying safe.

Eventually, something has to change.

Parents get sick. They become physically unable to provide the same level of care. They die.

And their disabled adult children are still here.

That's the part I don't think we talk about nearly enough.

Autism makes the conversation even more complicated because the spectrum has become so broad. Saying someone is an autistic adult tells you very little about how much support that person may need.

One autistic adult may have a career, drive, marry and raise children. Another may never be able to live alone, communicate their needs or care for themselves safely. They may need someone else to help with virtually every part of daily life.

Both have autism.

But their futures—and the questions their aging parents face—can look completely different.

I read versions of the same thought all the time in parent groups for people with disabilities.

Parents talking about trying to stay healthy.

Losing weight. Exercising more. Taking better care of themselves. Going to appointments they might otherwise put off.

Not because they're suddenly afraid of getting older.

Because they feel like they have to live as long as possible for their child.

I understand that feeling more than I wish I did.

There is a part of many of us that wants to be the last one standing.

Not because we want our child to die before us. Even writing that sounds awful.

But because we know no one will ever love them quite the way we do.

No one else has spent a lifetime learning every little thing.

And the thought of leaving them here without us can be harder to imagine than our own death.

For years, when I let myself think about the far-off future, I pictured certain people in our family being part of the circle around our kids.

It gave me some comfort. Matt and I wouldn't always be here, but surely there would be other people who loved them and knew them.

The older I get, though, the more I realize how much can change in a family over twenty or thirty years.

People get older. Health changes. Families grow. People move. Circumstances we never could have anticipated happen.

That's the thing about trying to plan decades into the future. You make plans based on the people standing around you today, with no idea what their own lives might look like twenty years from now.

People sometimes say, "What about their siblings?" or "Surely someone in the family will take care of them."

Maybe.

I pray there will always be family surrounding them.

But siblings and cousins have lives of their own. They may have children who need them. They may someday be caring for aging parents. They may face health problems or circumstances none of us can see coming.

And in our family, several of our children have their own diagnoses and challenges to navigate.

That doesn't mean they can't love, advocate for, protect or help one another. I hope they always do.

But I can't build Lily's or Leo's future on the expectation that one sibling—or one cousin, niece or nephew—will someday step forward and take my place.

No one person should have to become me.

What I hope we can build instead is a circle big enough that no one has to.

Maybe some of this fear comes from watching my mom live in memory care.

She was in a very nice facility. Her physical needs were being met. But the people caring for her didn't know the lifetime of stories that made my mom who she was.

I remember hearing a caregiver trying to calm another woman who kept asking where her husband was. She told her he had gone to the store.

It worked for that woman.

It never would have worked for my mom.

My dad didn't go to the store. If Mom was looking for him, we told her he was at work. That made sense to her. She believed it, and for a little while she could stop worrying about where he was.

Such a little thing.

But you had to know her to know it.

After we moved Mom to Florida, my brother hired caregivers who were able to be with her one-on-one. I know how fortunate we were to be able to give her that kind of care.

But it showed me something.

My brother, other family members and I spent a lot of time talking with these women about Mom. They heard her stories. They learned about her marriage to my dad, Tom. They knew she was the mother of six children. They learned what she liked to eat, what made her happy, what frightened her and what we could say when she was confused that might actually make sense in the world she was living in.

They got to know Kate.

Not just Kate, the woman with Alzheimer's they were being paid to care for.

Kate.

And I think that's part of what I desperately want for Lily and Leo someday.

Of course I want them safe. I want them cared for. I want their needs met.

But I want the people caring for them to know why Lily watches the same family videos over and over. I want them to understand what overwhelms her and what brings her comfort. I want someone to recognize when Leo is frustrated because he can't communicate what he needs instead of simply seeing a behavior that needs to be stopped.

I want someone to know the stories behind the behaviors.

I want them to know Lily.

I want them to know Leo.

And maybe that's the part of getting older that scares me most.

One of the things parents like us are often told is that we shouldn't wait until we die to move our adult children into the place they may eventually live without us.

I understand the reasoning.

Let them adjust while we're still here. Let us get to know the people caring for them. Let us see what works and what doesn't. Don't make losing Mom and Dad happen at the same time as losing everything familiar about home.

It makes perfect sense on paper.

I just don't know if I can do it.

Maybe I'll feel differently someday. But right now, as long as I'm healthy and capable of caring for my children, I want them here.

Especially Lily.

Any transition that big is going to be difficult for her. There isn't a magical age when changing her home, her people and her routines suddenly won't hurt.

So there's a part of me that thinks, if the transition is going to be hard either way, why would I give up years of having her home with us before I have to?

I don't know the answer to that yet.

Maybe the answer isn't one big transition. Maybe it's slowly making her circle bigger while Matt and I are still here. More people who know her. More people she trusts. More people who understand what makes her feel safe.

Maybe preparing her for a life without me doesn't have to mean pushing her out of the life she has with me before either of us is ready.

We are planning.

My parents created a special needs trust. We've dealt with guardianship and benefits and services. We think about the financial side of their futures. We talk about who might be part of their lives. We are trying to put pieces in place now instead of leaving someone else to figure everything out later.

But I've learned that planning and peace aren't necessarily the same thing.

I can sign documents.

I can save money.

I can write down every detail about Lily and Leo that I can possibly think of.

But someone still has to read it.

Someone has to care enough to really get to know them.

I've spent years handing teachers carefully written information about my children and hoping they have time to read it. I know how easily important things can become another page in a stack of paperwork.

A binder can't know my children.

People have to.

I can try to make their circle bigger.

What I cannot do is guarantee that I will always be here.

And this is where I struggle with God.

I've spent a lot of my life learning that accepting something doesn't necessarily mean understanding why God allowed it.

I love my children exactly as they are. I don't look at Lily or Leo and wish they were different people.

But sometimes I do look toward their futures and ask God why certain things have to be so hard.

Why does communicating have to be such a struggle for Leo?

Why does Lily have to be so dependent on other people understanding what she cannot tell them herself?

Why couldn't this one part of their lives—and ours—just be a little easier?

I don't have an answer.

Maybe this is another layer of surrender I'm still learning.

Because ultimately, underneath the trusts and guardianship papers and plans and conversations, there is something much harder I'm going to have to do.

I'm going to have to trust God with them.

Not today. Hopefully not for a very long time.

But someday.

And if I'm being honest, even with all the faith I have, that scares me.

So for now, I'll keep planning.

I'll keep building their circle.

I'll keep teaching other people who Lily and Leo are.

And I'll keep praying the same prayer:

Please, God, when I'm not here to know all the little things anymore, let there always be someone who does.