Feb 13, 2008

Hot Lemon asks the tough questions!

HL knows a thing or two about raising kids with special needs. So he always has these tough questions running around in his head, as do we...

here's a Question for Class Discussion: LONG TERM GOALS. What do you forsee in th' future? Adulthood? Work? Relationships?? What do you want and what does he want?

This is very difficult to answer, because our tactic until just recently has been to just think about the immediate future. It is a bit of a self-defense tactic of our so we don't drive ourselves nuts!

Skylers future will always require a dedicated caregiver to help him with literally everything he has to do. He just doesn't have enough ability to do anything for himself. So whether or not that is going to happen living with us, or living someplace else comes down to a whole lot of factors. Money, proper setting for him to live in, trust in the other caregiver to do no harm, it is a tough nut to crack really. There are waiting lists for funding, and there are jobs out there that are geared toward people who's disability is more cognitive than physical. Programs that are set up for somebody to go to and have a job where they are supervised as the perform a task that is pretty easy to do.

But there just isn't anything out there that we have yet to find where a kid like Skyler, who knows a lot but can't do anything, can succeed at.

He would like to work at a TV station, and we think that with his gifted memory he could possibly do something with a video tape library or something like that. But who knows...

Relationships? It would take a very special woman to get involved with Skyler. Somebody who would be willing to be part time caregiver as well as soulmate. I would hope that as Skyler grows older and matures more, he will catch up somewhat to where other kids his age are at emotionally, that would probably help him.

But you know what? We are all just trying to get through the next day right now.


  1. thought so. We're in the same boat: we SHOULD be looking at the picture some 20 years on, but trying to do so is both depressing and mentally exhausting. Will my son be able to function independently? Will he be interested in human relationships?? Will he need assisted living? Will he TALK before he's 20?

    I found myself fighting with getting Dharma Bum dressed this AM 'cuz she got all of 2 hours of sleep, and as I was loading out the kids I said to our 19 y.o. flatmate, "if you need proof of the non-existance of god, it's sitting in that van."

    Apparently his mama raised him differently (she's got "god is great!" stickers for her return addy labels) and I could hear him disagreeing as I walked out the door, but I wondered-- again-- what are WE as parents supposed to learn from the day-to-day suffering of these children? What are THEY supposed to learn in this life? What possible GOOD can come from saddling a child with a disability that will challenge them for the rest of their LIVES, for 70 or 90 years running? Always putting them on the outskirts of every aspect of society, always needing assistance with everything??


    (forgive, I'm crabbi today... Shitty weather)

  2. Oh, and you want the TOUGHEST question of all for a special needs parent? if you could go back and know this was in store for both you and Sky, would you still wanna get pregnant??

    THAT, friend, is the REALLY tough, $64,000 question. And I don't want you to answer it, I just wanted to show that the stuff I was askin' was the EASY stuff.

  3. BTW, you were supposed to tell us about poop and errections...

  4. You write beautifully and honestly about Skyler. Your strength and unconditional love always come through. You're my hero this week.