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.

Wednesday, May 5, 2010

I Sat and Cried...

by Joyce: I knew it was coming. I 've had many warning signs. Really for over a year now. Maybe I've been in denial. They say that's a more comfortable place to be. I listened to the voice on the other end of the phone. I gave a little feedback and then I hung up. I assisted Sarah in her usual morning routine and then let her wait in the garage alone. Once I heard the sound of the bus pull away, I closed the garage door and went to my favorite chair in the family room and cried. I just sat there and cried.

I had so many thoughts going through my head. Anger, frustration, questions, and disappointment. I determined disappointment was probably the greatest of my emotions. I feel let down. I feel we have let Sarah down. Not just Sarah, but all the others in her same shoes. I hate that I feel ungrateful. The caller even said to me that many parents are just happy for a place to send them. Them. Who is them? As I thought more about that, my anger intensified. It wasn't suppose to be like this. This wasn't what my revised plan looked like. But maybe that is the problem. It is MY revised plan. Maybe I've got it all wrong. Why can't I just be grateful?

I left the comfort of my chair and headed downstairs where I store Sarah's box. The life planning box. The one that has her life recorded in binders. Assessments, reports, IEP's, medical history, records of SSI filings and the one marked MR/DD. I made a mental note to change that. Ohio finally did away with the MR part of the equation earlier this year. But did they? As I thought about that I became sad again. In my opinion they can call it whatever they want, but their philosophy is wrong. Or is mine? I went through some newsletters. I looked at the pictures. Depressing. Or is it? I needed to get to work. So I agreed with myself that I would keep an open mind. Maybe drive by a little later.

When I walked into the office more than an hour later than usual, there was a mound of bags containing shredded paper neatly tied and stacked by the back door. It had obviously been a productive day in the back of the office. We have only one person handling that job right now. She is very effective at what she does. The other workers need her to complete her task so they can continue to do theirs. It just so happened it was payday. I have the task of handing out the paychecks. I usually get a mumbled thank you as I walk around. When I got to the worker in the back, I got a huge, from ear to ear, grin. And a very big thank you. It made my day. It also made me even more angry about that phone call this morning. Yet, I pushed on.

It was music therapy night. So I had an idea. I asked Sarah to get ready a few minutes early. I wanted to make a short detour, glance at a building one more time. As we drove down the street, I was surprised. It looked better than I remembered.

Maybe it is my problem. Maybe I just need to loosen up. Maybe I need to give it a try. Sarah was in her usual place in the back seat. She was listening to her Ipod as she always does when we're driving. She usually has a great sense of direction and knows immediately when I make a turn that is out of our pattern. She has actually saved me from going the wrong way on several occasions. So when she first asked why I turned right out of our street and not left like we should have for music therapy, I just told her I had someplace to go first.

As we got closer to the building, it really did not look as bad as I remembered. I thought to myself that I just need to arrange another tour. Maybe John can come along. And then I heard Sarah's voice...

"Moooommmm NO. Mom!!! Please." "What Sarah, What's wrong?" "I'm not going there." "It's OK Sarah. Don't worry." I sped up to turn the corner. Quickly. I didn't have the heart to tell her that is her FUTURE. Just this morning I received the call. The official call. The one with just two words. Two words that brought me to tears. The recommendation for future placement that will be on Sarah's final IEP next week...Sheltered Workshop...

24 comments:

COOLWHIP said...

So what is a sheltered work shop?

Amy L said...

Just because that is the recommendation, doesn't mean Sarah has to go there. Or is it just the fact that it will be written on her IEP? I know that a child transitioning into adulthood after public school can be terrifying for a parent. Jimmy has 3 more years until that day since Michigan provides education through age 26. Aren't there places that would employ Sarah like a daycare or the humane society where she would get to enjoy her job? Just thinking out loud. There are several employers here where we live that have our disabled adults employed in a variety of different jobs all over our town. Sarah has so much potential! Praying for you!!
Amy

Savina Pernisco said...

i am new to your blogs. i need to go back and read your older posts. this breaks my heart fro you! i am so scared to get to were you are at with your daughter.

Cammie Heflin said...

I'm with Amy. I really think that Sarah would do really well somewhere! I have seen so many videos of her and I am always so impressed and encouraged. She has so many talents, surely someone out there will see her talents and skills and love to have her as an employee!

Scarehaircare said...

Did I miss something? I thought she was going to be working at the quilt shop?

To Love Endlessly said...

Is there anyway to fight it?

heidi marie said...

i can't imagine what you are going through. sarah is making that "final" step into adulthood where the comforts of school are gone. now it's time to figure out what sarah is going to do in the real world. i have a feeling there will be lots of opportunities for sarah. she's such a bright girl. sending some prayers and hugs for you.

Rochelle said...

I also agree with Amy, a recommendation is just that a suggestion.
Sarah has tons of potential for a job outside a sheltered workshop environment.
I guess the way I look at that is the IEP committee has to recommend something that they believe would be supportive for Sarah. But, she has the best support system from your family.
Sarah is amazing and will soar in whatever job she decides is right for her.
We will be praying for you guys as you make this last IEP transition meeting.
You haven't failed Sarah at all, she is marvelous and perfect!

Karen said...

If neither her nor you are happy about that, change it. You are the pioneer of paving the way in these things. Don't let them call the shots. *hugs* It can't be easy. I'm sorry.

Lacey said...

What is sheltered workshop? I know she has had a few jobs before! Is this bad?

Brandie said...

You have showed us the many ways you advocated for Sarah and how she was included. (I'm thinking of all the wonderful Girl Scout posts) I know you and Sarah can rise above someone else's recommendation for her and give Sarah the future she wants.

Tracy said...

Oh, Joyce! I feel for you. I can only imagine the emotions that you are going through are a precurser to my own.

I am with a few other bloggers. I am not quite sure I understand what this place is? Is it a day program? Work program?

Shelley said...

Joyce - my heart aches for you - and for Sarah. You are right by her side - so you definitely haven't failed her!! Go take the tour - see how things are there at the moment. I really hope things work out well for you - surely a SW isn't necessarily the 'end of the line' - inclusive work practices needs to be a growing area - and one that should be giving opportunities to skillful young women just like Sarah. Good luck - and hugs.

starrlife said...

Clearly it is not the place itself but the meaning behind it that is making you so sad. We do not have sheltered workshops in VT so what happens then? What is it that you want for Sarah from an IEP, can the state give you a 1:1 person, life skills aide who can work on vocational skills with her? Why not?
More questions than answers- I would love to hear more.
Oh and don't forget- sending you a big hug and hankie for the tears. We are here, let us help.

Beverly said...

I am so sorry for your pain. I would not send her there if she didnt want to go. You dont have to do anything that you do not feel good about.Praying all is well.

Lianna said...

Joyce, I had to Google "sheltered workshop" and now I get why you're so upset. I get it.

I wish I had something encouraging to say. You're one of my mentors in this journey and I know that you, Sarah and your family can work this out.

Tight hugs for you.♥

Anonymous said...

I see why you would cry. I also see God here--in the push to continue your drive educate about respect and inclusion and the discovery of gifts. I see the "design" to which you often refer, but am sorry and have tears on my cheeks for the pain that comes with this moment. -kit

Alex's Mom said...

Hi Joyce, I am so sorry for your pain. I know we will all have to make these decisions in the future. It is hard to reconcile what we think is best for our kids relative to the "professionals/administrators".I believe we as parents know best, and need to go with our hearts. It will work out for you and Sarah, just may involve yet more effort..Best wishes...

blogzilly said...

I'm like many of the other people who left comments...I'm not familiar with what you are talking about? Can you, when you blog again, give some of us that are a bit new to this an education about what this all means?

I feel your pain, that much comes through VERY much...but I am not sure I understand it, and I want to.

FBF Rothkopf said...

Oh Joyce, big hugs to you. And to Sarah.

Tiffany said...

Oh, Joyce, I'm so sorry. I hope you'll post soon about what this is and why you are against it...I don't know...thinking of you though...anything that makes you cry is not alright with me!

Mary said...

I can imagine the pain you feel. Thank you for sharing so openly.

AZ Chapman said...

oh no i wish there was something else for her i know everything will work out

rickismom said...

I hope and pray that when Ricki finishes school, we can find something better than a SW for her. But I DO realize just HOW DIFFICULT that is. Someone mentioned a quilt shop. Can she work some days at the SW and somedays elsewhere?