The Future of Jordan

by Justin Rosario

Most parents get to send their kids off to college/trade school/the military/work/etc. when they’re 18 or so. That doesn’t mean their job as parents is done but it does mean that, if they’ve done it correctly, the bulk of their work is behind them. They can look forward to a well-earned retirement from full-time parenting and the unique stresses involved. They can, hopefully, see their children chart their own path with only the occasional helping hand from the parental units.

When you are the parent of a special needs child, particualrly one with significant learning and social disabilities, you don’t get to look forward to the future. You learn to dread it with every fiber of your being.

Jordan is 15. The dread has settled in and grows Every. Fucking. Day.

Who has time for the 5 stages of grief?

I’ve written about this before but when Jordan was diagnosed with autism, Deb and I skipped the first four stages of grief. Denial? Don’t be ridiculous. Jordan was clearly impacted by something. Anger? Anger at who? For what? We didn’t understand enough about autism to be angry. Bargaining? Neither Deb nor I are religious so there was no praying to a higher power to make it all not be true. Depression? There was no time for that. The learning curve for autism and the city services involved was steep and we had work to do.

And work we did. Debbie’s skill set came in extremely handy as we had reams of forms and paperwork to go through. While it was all gibberish to me, Debbie cut through it like a samurai. My skill set came in handy as we found ourselves essentially abandoned after we told our friends and family about Jordan’s diagnosis. Debbie is not good at being alone and the isolation was taxing. I, on the other hand, can go months without seeing another human besides my immediate family and not blink an eye. 

Thus, Debbie was perfectly suited to getting Jordan the services he needed and I was perfectly suited to taking care of a special needs child as a stay-at-home parent with a non-existent support structure. 

That doesn’t mean the grief didn’t catch up to us eventually. Every now and then, Debbie would break down crying over the unfairness of it. We would take turns cursing autism. We swore bloody murder if we ever discovered some corporation knew what was causing it and had buried the information the way Big Tabacco had done with cigarettes and cancer.

You’d think that as time went by, it would get easier. You would be wrong. Unlike losing a loved one, the pain doesn’t fade. Every day we see Jordan and every day is a reminder of what was taken from him, and from us, by autism. He’s 15. Jordan should be on the phone with his friends, playing video games or sports, or asking me for $20 to go get a smoothie with a girl he likes. He doesn’t do any of that and he never will. 

When Jordan was maybe 10, it really sunk in that he was never going to be able to take care of himself. I knew it intellectually but it caught up to me emotionally while I was talking to our surrogate daughter Claudia. Claudia, a product of her environment, is emotionally constipated but she resisted the urge to run away screaming from “feelings.” She managed to stand there as I fell apart and literally let me cry on her shoulder. She must have wanted to die but I felt better afterwards.

But the dread never went away. It had settled in and continued to grow. I am far from the only parent of a special needs child to experience this unique horror.

The future of Jordan

Debbie and I talk about this. A lot. The immediate future is pretty straightforward. Jordan will be in school until he is 21. After that, the city of Arlington will help find him a job that fits his temperament and capabilities. There are numerous adult services here and Jordan will almost certainly qualify for those. 

By this point, we’ll have gone to court to take legal guardianship of him as an adult. That’s a thing you have to do for special needs adults who are incapable of making their own legal and medical decisions. Otherwise, if Jordan were to get sick or be in an accident after the age of 18, we wouldn’t be able to do a damn thing about it. 

Jordan will also be on Medicaid, we hope. That’s the program that covers special needs adults that cannot take care of themselves. This was not entirely welcome news since Medicaid supersedes Debbie’s much better insurance. We were kind of hoping it would be the other way around but we have to apply for the Medicaid waver now. It takes years for a waver to process and we can’t risk Jordan not having coverage if Debbie and I fall down an open manhole. 

And then…that will be Jordan’s life for a while. We could look into a group home for adults with special needs but the idea of sending Jordan in his early 20s to live somewhere? Well that’s not happening. When Jordan is 21, Deb will be 59 and I’ll be 56. When Deb retires at or around 62, Jordan will only be 24. He’ll have long been an adult biologically but mentally? If we’re very lucky, he may be in his mid-teens. 

Here’s the thing about Jordan, while his progress has been painfully slow, he is still progressing. He can speak, write, read, use a computer, all at a stunted level but effectively. And more so than a few years ago. He is starting to ask “Why” questions, something that has been notoriously difficult for him much like the concept of time used to be. Jordan still can’t tell you how long five minutes is but he knows how many days of school he has left in a week and if you tell him something is happening on a certain day, he understands that now. Progress.

But progress today is not a guarantee of progress tomorrow. Jordan could continue to grow until he’s the functional equivalent of the teenager he currently is as opposed to a very tall 10 or 11-year-old. The one who looks at pictures of women in bathrobes and K-Pop idols online because he hasn’t discovered porn yet (and probably won’t any time soon, if ever). Or Jordan could hit a wall and this is who he will be for the rest of his life. What does that look like? 

I already know and it haunts me every minute of every day.

“Daddy! My stomach hurts!”

Once, when I was an assistant manager at the Green Acres Mall Gamestop back in the late 90s, long before Deb and I had had kids, or even talked about it, I was on break. I had picked up some McDonald’s and had set up to chill in the stockroom to read a book and eat. But first, I went to use the bathroom. When I came back, a middle-aged man was standing there, drinking my soda. I didn’t know who he was and he clearly didn’t belong there. He didn’t look homeless and he wasn’t stealing anything (other than my soda), but something was off about the way he was standing and drinking so I didn’t immediately start cursing at him at the top of my lungs.

I did say something, however, since A. He didn’t belong in my stockroom and B. He was drinking my soda. He, a man in his 40s or possibly 50s, started to call for his daddy and crying that he had a stomache. Like most people, I had (at the time), very limited interactions with special needs kids, much less adults. I didn’t really know what to do but it was obvious (to me at least) I was dealing with a child in an adult body. I tried to calm him down and ask where his daddy was but that got me exactly nowhere. I backed out of the stockroom and called for Steve, my manager at the time. 

Before we got any further, his caretaker found us. The man drinking my soda had slipped away from his group and they had been frantically searching for him. He was lead away and that was that. I always thought about how sad it was to be an adult with the mind of a child, crying out for a parent who was probably no longer there or, at the very least, no longer able to care for them.

This is the future of Jordan. Do you understand now the dread?

When Deb and I are in our late 60s, maybe early 70s, Jordan will barely be in 30s. We could be sprightly, energetic 70-year-olds, still able to care for Jordan. But we could be dead by then, too. Anastasia will be just barely 30 and almost certainly in no position to care for Jordan at home. She’ll have a career, maybe kids. And while Jordan is relatively low maintenance, he cannot be left home alone for an extended amount of time. He simply does not understand how to remove himself from a dangerous situation, like a fire. Or how to call 911 if he’s injured. 

So we have a choice. We can keep Jordan home with us as long as possible and risk a sudden decline in our health (or an accident), making it difficult for us to care for him. Or, we can keep him with us until his late 20s and then find him an assisted living home. 

Neither option is appealing in the slightest. 

Keeping Jordan with us until we can’t care for him anymore means a sudden and unplanned transition. Jordan wouldn’t understand and we wouldn’t have the time to ease him into it. Would he feel abandoned? I don’t know. It breaks my heart to think about it.

It would also mean Anastasia would have to be involved with little to no preparation. She is aware that she will be Jordan’s guardian and advocate for the rest of his life, long after we’re gone. Anastasia has never complained about this, even when we explained that it means she would always have to live close by to wherever Jordan eventually ends up. That if she were to move to another state, she would have to take Jordan with her, a significant complication. Anastasia loves her brother and is, even at the tender at of 13, determined to do right by him. 

That doesn’t mean we want to dump it all in her lap at once. We plan (hope) to ease her into her responsibilities over time. Here’s this bit of paperwork. These are the people you’ll be dealing with. Here’s how the state laws affect his medical care. By the time we reach our sunset years, Anastasia should be taking care of Jordan with us as backup, training wheels if you will. 

This option, while the more realistic and less traumatic option, is still soul-crushing. While it’s possible that we will find a place that Jordan loves so much that he wants to live there, it’s far more likely that he will never be truly happy not living at home with mommy and daddy. 

It’s true that Jordan is extremely adaptable. He doesn’t have meltdowns, or even get particularly bent out of shape, when there is a major disruption in his life. Every time we’ve moved to a new apartment, he settled down within days. New school? Within a few weeks. His autism expresses itself in a lot of difficult ways, but inflexibility is not one of them, thank god. 

But losing mommy and daddy? That might be a bridge too far. Every time I think about visiting him at his new home, all I can think of is what it will be like when he asks to come home. It’s over a decade in the future and it’s like a dagger in my soul.   

If that was as far as my imagination went, that would be horrible enough. But I can’t stop looking forward 40, 50, 60 years from now. What happens when Jordan inevitably gets sick or injured? He won’t understand what’s happening to him and 40 years from now, even if Deb is still alive (god knows I won’t be), she won’t be capable of helping. The idea of Jordan laying in a hospital room, alone, crying for his mommy who can’t come keeps me up at night. 

What will it be like for him when he’s old and his time comes? What if Anastasia is gone? What if she never had children to take up the mantle of caretaker for their uncle? Who will be there for him at the end? Death is terrifying for us all but for someone who can’t process it and is desperate for mommy to come and make it better? The sheer cruelty is enough that I had to stop writing these last three paragraphs multiple times so I could quietly cry and hug my kids. 

The guilt parents like me carry is incomprehensible to those outside of our cohort. Normal parents fret about their kids going out into the world and failing to thrive or doing something stupid and hurting themselves. We parents of special needs children/adults feel a daily terror of the future when we are no longer there to protect our children from a world that sees them as a burden. The stories of abuse in the kinds of homes Jordan will have to live in someday are rampant and enough to freeze the blood in your veins and the marrow in your bones.    

Anastasia will burn the world to ashes to keep him safe but she can’t be there 24/7. It’s not possible which means Jordan will always be at risk because we won’t be there for him. It’s an unending nightmare that runs constantly in the back of my mind and it’s still over a decade away. Even if we, as a nation, suddenly poured immense resources into caring for our most vulnerable (which we goddamn won’t), that would only alleviate a small fraction of the anxiety.

This is what it means to be a special needs parent. It doesn’t matter how hard we work or what we do. In the end, we won’t be there for Jordan and nothing can take away the pain of knowing that he won’t understand why. Fuck you, autism.

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