Inspirational, Not!
I’m reading a book called Best Friends Forever, by Jennifer Weiner, and a passage from it stood out for me like a neon light. My eyes blew open and I thought, Ahh, that’s exactly it:
“He would be, in some ways, like a child until he died, and it was tragic, to be sure, but there was something almost fairy-tale-ish about it. [He] would age, but he’d never grow up, never have to worry about the things grown-ups worried about.”
I often think this way about Nick. His future is still a mystery to me. I mean, I’ve never raised or been around a child / teen / adult with his disorder: PDD NOS and mild MR (still can’t even say those words… it’s just too hard because to me it means he can’t do something or he can never be someone he might want to be, like a scientist, as in David Banner, as in the Incredible Hulk! Hey, it’s inspiration, right?).
I don’t know since his teachers all feel he’ll do great working in a cafeteria, taking out the trash. I’m being a tad bit sarcastic but it’s not too far off the mark of how some people interpret his future.
Sometimes I look at him and think: This boy sure is lazy. And so immature! I mean he laughs at silly stuff on television, stuff that only a little boy would laugh at. He is nowhere near what other 16-year-old kids can do. They’re all going out with their friends, getting ready to go to proms, learning to drive cars, getting jobs. I found this out recently when I walked into my local supermarket and saw a classmate of Nick’s working behind the register and yelled out “Hey, Ms. Collins, how’s Nick?”
I said, “Fine and I didn’t know you worked here?”
“Yeah, she said, and I’m going to the prom this year too…”
And I was thinking Nick’s not going to a prom. He can’t even go to a silly little dance on his own (mind you, NOT MY CHOICE).
This girl was staring at me all happy and smiling and wearing makeup and probably having sex now, too. And Oh my God, she used to play with my kids in my backyard, jumping on the trampoline, finger-painting with Meghan. I felt like I’d just been fed through some sort of time warp; she’s moved on but my kids are still lagging behind. I felt sick collecting my groceries and watching this “girl” do a job that may take Nick ten more years to be able to do—or maybe not be able to do.
Thank God I have friends who like to drink and that they’re on speed dial!!
The point I’m trying to make is that it’s so hard to focus on the “can dos” when the “can’t dos” are glaring at me like neon signs. Time is moving on and we are NOT keeping up with the Joneses’ kids, and it’s hard to take sometimes.
I know I’m feeling sorry for myself, but so what, I’m entitled once in a while to do this, especially when stuff like this sneaks up on me in such a brutal way, showing no mercy! And I know I should be focusing on staying “positive” and telling myself: focus on what my kids CAN do and help them be happy doing it, something like that… bla bla bla… As I’m trying to type with a laptop keyboard that is missing the P and K keys—notably plucked out and chewed up by one Miss Meghan—see what I’m saying?
And do I note that last part as something Meghan can do?
Sometimes I’m amazed that I’m not some extremely fat raging alcoholic with suicidal tendencies… Just amazed!!
Kate says:
May 19th, 2010 at
Well, that passage might not be inspirational but you are. You are doing the best you can with a difficult situation and you are doing quite well I think. Everyone gets depressed when they compare themselves or their kids.
Holly says:
May 19th, 2010 at
Thanks Kate!!
Rachel Cohen-Rottenberg says:
May 19th, 2010 at
I think it’s less important what Nick’s teachers think he can do than what Nick really, truly wants to do. When I was Nick’s age, I “wanted” to do a lot of things, but only because those were the things people expected of me or could articulate to me. It’s taken me my whole life (almost 52 years) to get over it and just do the things that I like doing. So what if I haven’t kept up with my classmates from high school, many of whom are Big Important People now? I wasn’t keeping up with them at 14 or 17, and time has definitely not changed that. Besides, keeping up with them is the wrong image. I’m on a different trajectory altogether. It’s as though I’m headed for Montreal and they’re headed for Paris; how can I keep up with them when we’re on different roads?
It’s taken me a long time to get right with this, but I like my life and I like myself. I like doing the simple things that give me joy. I am the way God made me, and God doesn’t make mistakes. God wants me here, or I never would have made it this far. God wants Nick and Megan here, too, as they are. There is something about Nick’s childlike innocence that the world needs desperately. There just isn’t enough of that stuff around, IMO.
The Buddhists say that comparing oneself to others is the hell-realm. You might want to stay away from that place. Trust me. It’s the pits.
Tanya @ TeenAutism says:
May 20th, 2010 at
It really hits me in the gut when I compare Nigel to his peers and think about the future. I have to remember to think of him as an individual, and, as you said, all the positive things that he can do, but I agree that sometimes it’s so hard.
Holly says:
May 20th, 2010 at
Thanks for sharing your personal story, Rachel. Sometimes we all need to be reminded that we are all different and that’s the point. I guess I recently realized that the gap between Nick and his peers seemed to have widened instead of narrowed.
Rachel Cohen-Rottenberg says:
May 20th, 2010 at
Yes, when you realize that the gap between autistic and neuro-typical peers has widened (or is simply wider than you’d imagined), those are the grieving periods. I’ve been through many. It’s very painful to see the difference between your original pictures of yourself/your child and the reality of things. It’s so, so hard. I’ve cried many tears over it, and they still come sometimes, but I’m finding a lot of peace through it all. So let the tears come, and the anger, and all of it. You’ll see yourself and your kids through. You’re an awesome mom and so honest.
Holly says:
May 20th, 2010 at
Thanks, Rachel! You are a good friend! To be honest I was a bit sad but not angry or depressed, nothing that a good friend and a very good apple martini couldn’t take care of…
Shelley Dillon says:
May 20th, 2010 at
Yes, comparing sucks but it is hard not to. It seems to be the full underlying message of the school years too. Standardizes test this, shove them in a pigeon hole there. I think we were all better off once we got out of that grind. Nick will too. There is room in this world for Nick and Meghan and you and me and Shea too.
XO
Candy says:
May 28th, 2010 at
Sometimes I feel incredibly alone in my neighborhood with Jeremy whooping it up outside throwing in a few SIBs while he’s at it…I try to believe that there is a reward for enduring all this, somewhere down the line.
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