The Opinionated Ogre is 100% reader-supported. Please help me continue to inform/amuse/outrage you by becoming a supporting subscriber today for only $5 a month or just $50 a year! If not, it’s all good. Welcome to the Ogre Nation anyway!
Editor’s Note: This is the piece I was writing, and realized it would be best if I first republished its companion article from 2023. Thank you for your kind thoughts and wishes for our family. I write these difficult articles for three reasons: Therapy for me, therapy for others in our position or close to it, and to help others see our special children and know that they are people, something soulless creatures like RFK Jr. would deny.
When Anastasia was maybe six, she got lice while at her after-school program. I knew for a fact that getting lice had nothing to do with how clean your child is. But I had been taught growing up that only the “dirty” kids (aka the poor kids) got lice. Ridiculous and kind of snobby (I grew up in a middle-class Italian neighborhood, but still…). But even though I knew it had nothing to do with cleanliness, I felt like a failure as a parent that my kid had lice.
It was completely irrational, and I knew it was irrational. It still gnawed at me for weeks.
This is like that, but worse.
Jordan is 17 and will be turning 18 in April. We will be going to court to take legal guardianship of him as an adult because he is not capable of making his own decisions, and it is extremely unlikely he ever will be.
It was strongly recommended to us by the special needs lawyer we have retained to do this, who has a special needs child of his own, that we start acclimating Jordan to staying with other people so the transition to a group home someday wouldn’t be so traumatic. This is known as respite care.
When he said this, I felt all the blood drain from my face.
If you read my previous article, “The Future of Jordan,” you’ll have some idea of why discussing transitioning to a group home makes me physically ill. But this made it so much worse, which, honestly, I didn’t think was possible.
The Future Of Jordan
When you are the parent of a special needs child, particularly 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.
Let me rewind a bit.
When Jordan was a baby, Mrs. Ogre’s parents would come over once or twice a week to babysit. This would allow me to work part-time at GameStop (we needed the money) or go out and run errands. But once Jordan was diagnosed with autism, that mostly stopped. As I’ve mentioned previously, special needs parents are frequently abandoned by their friends and family. They don’t mean to do it, they just do. It is what it is.
As we made our way through the special needs services of NYC, we learned of something called “respite care.” This would be someone coming to our apartment to watch over the kids so we could “take a break.” Maybe go out to a movie. Maybe go eat dinner at a restaurant.
It’s important to understand that Mrs. Ogre and I had our kids late in life. I was 35 and she was 37. We had spent the last decade together going out and having fun and partying, etc. When we decided to have kids, we spent several more months enjoying our freedom because we knew we wouldn’t have any for a long time.
So the idea that we needed to “take a break” from our kids was…kind of offensive to us. We had enjoyed our freedom, and now it was time to be a parent. We understood WHY people needed that, but WE didn’t. Not really. Not like that, anyway.
Now, respite for special needs parents is different. A lot of parents really DO need a break. Special needs kids can be incredibly high-maintenance, and the stress can be overwhelming. That is not an accurate description of Jordan. We have been extremely lucky. When he was younger and prone to meltdowns, it was stressful to go out in public. But at home? Eh. He was noisy but hardly stressful. By the time he was 6 or 7, he was pretty easygoing and easy to manage. Even in public.
We could have used respite services. It would be completely free, covered by the city, both in New York and down here in Virginia. But we never did. We didn’t want to take up the resources from someone else who really DID need it. And the idea of going out and leaving our kids at home when they were younger was beyond distasteful. We had had our playtime. Now it was family time. We either went together or we didn’t go. No child left behind. Ha-ha-ha.
Did you know the Opinionated Ogre has a weekly podcast? It’s true! New episodes every Thursday! Catch the latest episode here:
Now that they’re teens, though, and more than happy to have us go away and leave them alone? Sure, Mrs. Ogre and I will go out to a movie by ourselves. But back then? Never. Especially me as a stay-at-home. My entire function is to care for the children. The idea of “needing a break” from them was anathema. Especially once they were in school. I had the apartment to myself all day. Why would I need a break on top of that?
So that brings us back to today. Respite care. For Jordan, the almost-an-adult.
The idea that we would need to send Jordan away for the weekend so we could get a break makes my blood boil.
Of course, that’s not WHY we would be sending Jordan away for the weekend, so it’s completely stupid and irrational for me to be getting mad over it. And yet I’m still fuming at the idea.
This is not for me or Mrs. Ogre. It’s not so we can relax. It’s not because we need a break. We can do that whenever we want now. Jordan and Anastasia are old enough for us to go out whenever we want. Hell, if Claudia or Lila are home while Anastasia is out, we can leave Jordan by himself for hours as long as one of them pokes their head in every now and then to see how he’s doing.
This “respite care” would be explicitly to get Jordan accustomed to staying somewhere else overnight. To get him used to the idea that he can live somewhere where mommy and daddy aren’t. And as time goes by, the stays will presumably get longer. Maybe instead of one weekend a month, it will be two, then three. Then maybe a week during the summer, then a few weeks.
And then maybe someday in the not-too-distant future, we’ll pack up Jordan's toys and his clothes and his computer, and he’ll just go stay at his new home, and I’ll spend the next month (or two or three) crying as I walk past his empty room.
Because respite care means I needed a break from my son for the rest of his life, and I’m a fucking failure as a parent.
Like I said, completely irrational. This HAS to happen. Jordan cannot live with us until we’re in our 70s. Anastasia cannot care for him full-time as she tries to live her life. And yet, the idea of putting him in a home makes me feel like a complete failure as a parent. Like I’ll be sending him away because I can’t do my job, the ONE job I’ve had for, at that point, over 25 years. It’s still almost a decade away and even preparing for it makes me hurt in ways I didn’t know I could.
We’re going to do this. Arlington has respite care, and this time we will be sending Jordan away overnight.
And I will irrationally hate myself and every second of it. Fuck autism.
Please support this work by becoming a paying subscriber. This newsletter is free and will always remain free but it still takes time and effort to produce. Your support means everything to me. For just $5 a month or $50 a year, you can keep the Opinionated Ogre going. Thank you!
Being a parent means adapting to constant growth. What you're doing is providing Jordan with an opportunity for more growth, growth he would never get staying with you and growth he could not get on his own. That's not failure, that's Olympic-level parenting.
For what it's worth... You are not failing. You are doing what's best for Jordan. Even though it's hard, even though it goes against what you've been conditioned to believe, you're putting what you *know* is necessary for his well-being first. You are doing what you know will give him the best chance to grow and have the best life he can.
There are plenty of people who would refuse to do this. They would flatly refuse to contemplate the very notion because they're too proud or too obstinate to realize what's necessary. Eventually they'd grow too old to care for Jordan, the burden falling more and more on Anastasia, and when they were gone, and she couldn't shoulder it any longer, he'd be left alone. That would be failure.
There are also plenty of people who would simply kick the can down the road, knowing this was coming but unwilling to confront it. But the day would come when circumstances forced their hand, and he would end up tossed out of the only life he's known with no chance to acclimate and no time to figure out what works best for him. That would also be failure.
You did neither. You acknowledged the problem and made the even harder decision to confront it now, before it becomes an emergency. That isn't failure, that's the absolute best anyone could do.