Saturday, October 17, 2009

Transition Works

Sanibel Island, Christmas week 2003

Back when she was fourteen with long, naturally colored hair and braces on her teeth, I couldn't have imagined how quickly the years would go and how interesting they might be.We are coming up on twenty-one! (What?!) and that means all those dreams I've been dreaming and all those worries I've been worrying are now right in front of me and the time has come to make some concrete plans, allow for some flow to them and get down to the business of bringing Emily into adulthood.

It's daunting.

I began the process of transition to adulthood back in junior year of high school when I approached the school about a part time, after school job. With a job coach. I was pleasantly surprised and mildly shocked when the school okay ed a vocational evaluation and a quickly timed meeting followed and that very afternoon the job facilitator found her a paying job at a local store, two hours, two afternoons a week with a job coach. She's been working ever since!

That job was a wonderful job at a local five and dime, now closed. But oh! She has a wonderful boss and a job coach match that clicked and it's been going forward since. The store closed one year after she began working there but her job coach mosied on over to the grocery store next door and Emily found herself gainfully employed pretty much before she was unemployed!

Same deal, two hours, two afternoons and she loves this job. She's been there over a year and a half now and has developed some co-worker friendships in-house. Which is where they will stay. But the in-house friendships does this mother's heart good. They remind me that there are still good people in the world and that my daughter is fortunate to be surrounded by folks who respect her, support her and like her.

Will her life always be this way? I like to think so. Ah, but I am more realistic than naive and so I tend to walk around with the feeling that a shoe is going to drop or the eggs aren't going to hold me. A small price to pay to see this wonderful young woman have a good, meaningful life.

Now we are facing one more year of school and then what? What will she do during the day? Continue where she currently works -- for two days, two hours? Will more hours be available? Will transportation miraculously appear? Who will her friends be in adult life? Where will she spend her off time? At home, alone? With Mom or Dad? Or will she go to a day program? A sheltered work shop? (shudder at that thought) Forty hours? Twenty hours? Health insurance?

As I mentioned, it's daunting.

While the dream is to eventually find Emily living in an apartment with friends [and help] for the moment ...

...I envision her living at home, with Mom & Dad, getting up in the morning and then going off to a day program, perhaps three days a week, and on the other two days working at her job. I envision transportation pulling into the driveway, but that's a dream that's not going to happen, so pull yourself together Mom and envision you and Dad doing the transportation piece.

Emily will be happy because she'll spend time with friends, learning new skills and fine tuning the ones she knows and we all will be healthy and ... living happily ever after.

Nope! Don't tell me no. I ain't gonna listen! Weekends will be filled much as they are now, with Friday night social group and Saturday morning sports and time at the gym when we can. Visits with cousins and aunts and friends and mall trips and phew ... I'm tired thinking of all we accomplish now and then I wonder, 'just how does one do this for ... ever?'

How do I make this happen? Right now I am attending a series of work shops put on by a local ARC program and I am busily calling day programs, post grad schools and day rehabs for visits to check them out and see what they have to offer. I have been talking to DDS to see what exactly they'll fund. Let me tell you, the answer there is usually 'We don't do that.' or 'There is no funding.' But I know better and don't want to hear there's no money, 'cause I know there is. I don't want to hear 'we don't do that' because I know you can if you want to and I know there are many ways to knit a sweater and we're probably using a similar pattern to others but our cables might be a bit thinner or maybe a bit more complex.

Relax, I'll help YOU figure out what she needs and we'll go from there. Team work. Team effort. Just the way it was when she was a toddler, a preschooler an elementary student and then middleschooler and highschooler. It's all about the team and the people that will come together to help make her life meaningful.

I've already begun to worry about depression and how it will set in if she goes from five or six very active days out in the world to sitting home waiting for me to get home from work. That will not work and I won't allow it, but none the less, I worry about it.

Will I be able to cut my hours back? Retire? Work evenings? Will I be able to pull any of this off?

But more importantly than anything I've thought of or worried about ...
What will Emily want for herself?

June 2008 holding brand new cousin Jazmine.

Her license? A car? A house? A husband? A baby?

The one thing that Emily hasn't learned ... is that she really can't have it all.

Not in the way you or I can. Or the way her sister or her cousins can. But it seems to me there is a built in knowledge that what she can have, she can have differently.

And the rest? She aspires to it. All of it.


Lisa :-] said...

I know Emily is "special..." but a lot of the things you write here sound very much like what parents of any random twenty-one-year-old on the planet might be thinking about, too.

You mention the posiibility of Emily wanting her license. Would it not be possible for her to learn to drive?

I think she will go as far as she can in any direction she chooses, with your help and support.

And I love that picture of her on the beach. She really is a beautiful girl.

Kathy said...

There are many things that Emily will be able to do ... and driving is certainly one of them -- at least from the physical point of view. But what I tell her when she talks about her license is that 'when you can read the drivers ed manual, you can take the permit test'. Tall order for someone who can read functional directions ... so, yes, she could drive, but can she go through the licensing process?

I too think she will go far, Lisa. Because of her tenacious character ... and yes, the things I am thinking about are the things we think about for our typical young adult children ... but when it comes to the more needy of the special kids, you have to make those decisions for them ... and that's the tough part.

salemslot9 said...

nice entry, Kathy