My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Thursday, May 6, 2010

Like a Sheltered Turtle

a continuation by Joyce: After speeding around the corner to get Sarah away from the sight of that building that she obviously remembers touring, I really started thinking about why this is so bothersome. For years now, we have forged ahead with our plan to see that Sarah is fully included in her community. In school, in Scouts, in sports, in dance and in general activities. The past two years she has been in a job training program, still a part of the school structure until age twenty two, that supports the concept of working in the community.

Yet that job training program is now being told by the County Board of Developmental Disabilities, that they are over training. There is no where for them, there's that word again, to go. The placements in the community are drying up. As more and more people are loosing their jobs, the opportunities for people with disabilities is also shrinking. So their solution is to send them off to the Adult Activities Centers, which is the new descriptor for Sheltered Workshop. In these AAC's upwards of 250 adults with all types of developmental disabilities are gathered in one large area. Think about the horror we would feel if that was still the norm for our kiddos when they entered school kindergarten. So why is it still an acceptable arrangement once they age out of the school system?

The tears I shed yesterday were not just because I was sad. I'm just so darn frustrated. I am so tired of the fight. Why must we as parents continue to push and prod for what should be. No, it is not OK to "shelter" a human being because they happen to have one extra chromosome. Or a developmental issue that happens to make them different from you or me. There is no question that persons with disabilities can be productive in a competitive environment. I wrote yesterday about one such gal in our office. The one that had accomplished so much, independent of my being there. The one makes a difference in our ability to keep working. The one who had a smile from ear to ear when I handed her the envelope with her paycheck in it. Her label of Autism also had her heading to a sheltered environment. Why?

I found an excellent article today while I was searching for information on sheltered employment. It is by Steven Taylor who is the director of the Center on Human Policy at Syracuse University. One paragraph I find especially helpful to my cause is this: There is no question that people with disabilities can be productive and dependable workers. I am sure that many clients in sheltered workshops are proud of their work. But wouldn't those clients be prouder if they knew that they could perform their skills in real places of employment and be included and accepted in the regular work force - just like anyone else? And wouldn't the businesses and places of employment be enriched by having workers with disabilities on-site, rather than out of sight? You can read the entire article here.

If you saw Sarah's post on Monday, you know that we went to the park after music therapy to eat our dinner. Then we went for a walk and came across a sign with turtles on it. Sarah was convinced that sign said there were turtles in that pond.


If you look closer, the real purpose of the sign is to tell pet owners not to dump their native species of animals in with the non-native species. As I read that sign I could not help but draw parallels to our situation. For nearly twenty-one years, I have been raising Sarah as a native. As a typical part of society. Now all of a sudden, it is being suggested that I drop her in a non-native setting. The sign indicates when you do that with animals it brings about an imbalance to the ecosystem and that can create unforeseen problems.

I took that sign, as a sign. A sign that I'm on the right track. I need to continue to push forward. I will not allow Sarah to be dismissed into a setting where she does not belong. She deserves so much more. If the County Board of Developmental Disabilities can't arrange for a community placement, then I will.

15 comments:

Lacey said...

You go girl!!

JRS said...

I believe you will Joyce. Great post by a great advocate.
---Jen

Loren Stow said...

Joyce, I think you are on the right track - you keep fighting for Sarah because you know she deserves more!
Sarah is really lucky to have you as her mom!
I learn so much about advocating and not 'settling' for anything less than what my child deserves.
Thank you.

Cathleen said...

As the mom to a 3 year old with DS, I find this post incredibly touching. I know that you will find the right thing for your daughter! You are such a good mom.

Karen said...

Good for you, Joyce! Keep fighting the fight. Sarah knows that you're doing the right thing.

Runningmama said...

Joyce, you are definately a role model for me and for all of us walking behind you on this path that is less traveled. I have been keeping up with Sarah and know that there are so many things she is capable of, I can't wait to see where life takes her.

Anonymous said...

Good for you!!!!

Jan

The VW's said...

Keep fighting for Sarah! She is such a smart girl and she needs to be able to use her skills! With a Momma like you, she will be fine! Love and Hugs!

Rochelle said...

You are definitely on the right track. Great post and a great article by Taylor thanks for sharing.
Thank you for being such a great advocate for not only Sarah but all individuals with disabilities.

To Love Endlessly said...

Go Joyce GO!! You fight for that young lady of yours. You shouldn't have to, but that's what's in the plan for the time being.

Lisa said...

Sarah, your mom is amazing! Joyce, thank you for being such a great example. I'm so thankful that you are on this road ahead of me, lighting the way.

Adelaide Dupont said...

Is it not true rather to say that people with disabilities are over-qualified rather than the workshop is over-training?

(And that the competitive workforce is under-equipped?)

Flee said...

You are my inspiration!!

Tiffany said...

You truly are an inspiration...and for some reason God chose us to have these special girls b/c he knew we would fight for them. Carry on!!

starrlife said...

What a great post and metaphor about the turtle/native species. I feel your frustration and frankly it ticks me OFF! That is baloney I say! There are jobs and the state doesn't want our kids competeing with "neurotypical" folks' opportunities? Humph.