The other day, I took the younger child up to Dad’s retirement community. A grandma there saw me and R in the hallway and said,
“Hey, you know something?”
The funny thing is, yeah, I do know something. I knew exactly what she was going to say. But it would have been rude for me to tell her that. Plus I wanted desperately to be wrong.
I wasn’t.
“What?” I probably said.
“That kid is going to grow up someday, and you are not going to believe how quick it comes. One day it’s ‘Daddy, Daddy’ like right now, the next day, they’re out of the house. My boys are in their fifties.”
“Uh-huh.”
“So enjoy this while you can.”
I wanted to say, yeah I have another kid who developmentally will always stay this age or younger. Think that’s a lot of fun, do you?
I didn’t say that. I smiled politely, and pushed it all down.
Over the weekend, at a friendly poker night, I saw an old college friend, whom I’ll call Penn. I hadn’t seen Penn in at least 20 years; he doesn’t read this blog.
Penn was talking to the group about his son applying for college and his adolescent daughter. At some point Penn asked me:
“How old are your kids, Daniel?”
“Eight and five.”
“You know, I don’t want to say I miss those years, but, there’s something about that time that you can never get back. Just enjoy it while you can.”
The room was filled with my friends who know about Dar. They all looked at me with their breaths held. Plus I knew Penn to be a great dude, so…
I said, “well…actually, one of my kids is severely autistic. So actually, I get to have these years forever.”
Penn said, “maybe it’s fun to be needed?”
Here’s where I didn’t know something. I never even thought of that. I said, “hey, if it’s fun to be needed, I got a lifetime of fun, fun, fun!”
We were joking. Penn knows I love him.
What exactly is the deal here, in terms of Dar’s development? I have said to you many times in the past that I’m amazed at these bloggers who have autistic children who can toss off statements like, “well my kid is 12, but he’s at a third-grade level.” Which app on their iPhone is keeping track of this?
In an offhanded way, I said the same thing to Dar’s speech therapist this morning.
She goes, “You don’t know?”
I go, “No. Do you?”
“Yeah. I would say that in terms of expressive language and his ability to put words together, he’s not yet at the level of an average two-year-old.”
“You’re saying that developmentally, he’s about eighteen months old?”
“Expressively. Receptively, he understands a lot of things, he’s proven that. I would say receptively, he’s around two-and-a-half to three years old.”
David Letterman used to say he kept his haircut to make other people feel better about their own haircuts. Well, one reason for this blog is to make you feel better about your own kids.
I feel so sorry for little R. His brother will always be this ball and chain on him, keeping him from the freedom and opportunities he should have. I don’t know, maybe we’ll get lucky and one of us will live long. Maybe Dar will be institutionalized by then and all R will have to do is write checks from an account where we’ll have left plenty of money.
Maybe. Still feels like a slow-motion train wreck that we can’t stop.
Or maybe Dar will someday be more than a two-year-old?
Not with all the fun I’m planning on having?
Dar, institutionalized. Me, the bougie parent who can’t see any better long-term alternative for me or my kids.
Not the life I planned. Not the life anyone plans.
I’m bougie, yeah, but that doesn’t mean I didn’t listen to Suicidal Tendencies back in the day. Let’s finish today’s entry with one of their songs.
The lyrics go like this:
Sometimes I try to do things
And it just doesn’t work out the way I wanted to
And I get real frustrated
And I’m like, I try hard to do itAnd I’m like, take my time
And it doesn’t work out the way I wanted to
It’s like, I concentrate on real hard but it doesn’t work out
And everything I do and everything I try it never turns outIt’s like, I need time to figure these things out
There’s always someone there going, ‘Hey, Mike
You know, we’ve been noticing
You’ve been having a lot of problems lately’‘You know, you should, maybe, get away
And like, maybe you should talk about it, you’ll feel a lot better’
And I go, ‘No, it’s okay, you know I’ll figure it out
Just leave me alone I’ll figure it out
You know I’ll just work it out myself’And they go, ‘Well you know if you want to talk about it
I’ll be here you know and you’ll probably feel a lot better
If you talked about it, so why don’t you talk about it’
I go, ‘No, I don’t want to I’m okay, I’ll figure it out myself’
And they just keep bugging me and they just keep bugging me
And it builds up insideYou’re gonna be institutionalized
You’ll come out brainwashed with bloodshot eyes
You won’t have any say
They’ll brainwash you until you see their wayI’m not crazy, institution
You’re the one who’s crazy, institution
You’re driving me crazy, institutionThey stuck me in an institution
Said it was the only solution
To give me the needed professional help
To protect me from the enemy, myselfI was in my room and I was just like staring at the wall
Thinking about everything
But then again I was thinking about nothing
And then my mom came in and I didn’t even know she was thereShe called my name and I didn’t even hear it
And then she started screaming, ‘Mike, Mike’
And I go, ‘What, what’s the matter”
And she goes, ‘What’s the matter with you”I go, ‘There’s nothing wrong, mom’
And she goes, ‘Don’t tell me that, you’re on drugs’
I go, ‘No, mom, I’m not on drugs, I’m okay
I was just thinking you know, why don’t you get me a Pepsi’And she goes, ‘No, you’re on drugs
I go, ‘Mom, I’m okay, I’m just thinking’
She goes, ‘No you’re not thinking, you’re on drugs
Normal people don’t act that way’I go, ‘Mom just give me a Pepsi, please’
All I want is a Pepsi and she wouldn’t give it to me
All I wanted was a Pepsi, just one Pepsi
And she wouldn’t give it to me, just a PepsiThey give you a white shirt with long sleeves
Tied around you’re back, you’re treated like thieves
Drug you up because they’re lazy
It’s too much work to help a crazyI’m not crazy, institution
You’re the one who’s crazy, institution
You’re driving me crazy, institutionThey stuck me in an institution
Said it was the only solution
To give me the needed professional help
To protect me from the enemy, myselfI’m sitting in my room and my mom and my dad came in
They pulled up a chair and they sat down, they go
‘Mike, we need to talk to you’
I go, ‘Okay, what’s the matter”They go, ‘Me and your mom have been noticing lately
That you’ve been having a lot of problems
You’ve been going off for no reason and we’re afraid
You’re gonna hurt somebody
We’re afraid you’re gonna hurt yourself’‘So we decided that it would be in your interest
If we put you somewhere
Where you could get the help that you need’
And I go, ‘Wait, what are you talking about, we decided
My best interest, how can you know what’s my best interest is”‘How can you say what my best interest is’
What are you trying to say, I’m crazy’
When I went to your schools, I went to your churches
I went to your institutional learning facilities’
So how can you say I’m crazy”They say they’re gonna fix my brain
Alleviate my suffering and my pain
But by the time they fix my head
Mentally, I’ll be deadI’m not crazy, institution
You’re the one who’s crazy, institution
You’re driving me crazy, institutionThey stuck me in an institution
Said it was the only solution
To give me the needed professional help
To protect me from the enemy, myselfIt doesn’t matter, I’ll probably get hit by a car anyway
