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.

Monday, May 11, 2009

A Dirty Little Word?...

...the FUTURE...


A Message from Mom: Mother's Day is a perfect day to reflect on the past and look forward to the FUTURE. Or Is It? For some of us that future is hard to see. Not necessarily because we can't see it, rather it's so, so damn hard to look at. Amy over at Girl in a Party Hat wrote a moving and eloquent entry on Sunday which she titled Ghost of the Future. I read it midday and truthfully it haunted me for the rest of the weekend.


For several reasons. Many that are swirling around in my mind with lightening speed. As Sarah is getting closer and closer to that infamous age of 22, the future is becoming more in focus, crystal clear at times. Yet blurrier than the best prescribed pair of glasses can correct.


First, who picked twenty-two? The mystical age when a student on an IEP, one who falls in that IQ curve of having some level of mental retardation, stops receiving services from their home school district? Why not 21, or 25 or even when it is deemed most appropriate for the individual student? After all, it is an Individualized Educational Plan. But so be it, some fights are just not worth the battle. We have two more years on the tabs of the school district. Two years to prepare for the FUTURE or is it the rest of our lives. The rest of Sarah's life.


I have been attending lots of meetings lately about the new IEP that the state of Ohio will be rolling out in September. I like it, actually I love it. It is scaring the hell out of most school districts. Why? Because it is making them think about the FUTURE. In a different way. I believe it is forcing a shift to their paradigm. We all know change can be tough. But change in total thought process, change for the FUTURE of the next generation is even scarier.

And I think I know why...


I decided to sneak home on Friday. As I was turning onto the street I could see that our big garage door was open. Odd. I looked at the clock. Sarah should be home and she ALWAYS shuts the door behind her. The bus driver won't leave until that door is down. It's our unwritten code that makes me feel better about Sarah coming into the house alone. As I go around the slight bend in the road, I can see a body bending over by our mailbox. The person is emptying out the water that had accumulated in the lid of the garbage can during the morning rainfall. Then up comes the lid onto the garbage can and so does the person. As I get closer, I realize it is Sarah. Still in her work uniform, she went out to fetch the empty garbage can.

In the old model, this observation was all that was needed for the adult responsible for transition to see. Note in file: Client can take in garbage can. Placement: MR/DD Workshop - Possible jobs: backroom, loading dock, maybe cafeteria. And that's where Sarah would stay for the next 20, 30, even 40 years.
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THAT FUTURE is scary. Scary for me and scary for Sarah. How do I know? Because last week Sarah and I toured the county MR/DD facility where they wanted to send her for the summer. Where they would want her to go after she ages out of school funded instruction. It used to be called a "Workshop." Parents protested. So they changed the name to "Adult Activities Center." One problem. They didn't change what was inside. They are still working off the old paradigm. The one that says she should be comfortable doing less than her potential. The model that allows her to sit in a wheelchair clinging to baby dolls and rocking back and forth, if that's what she wants to do.
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What they are missing is Sarah took that garbage can in with NO instruction. NO supervision. NO job coach. NO IEP goals. NO performance standards. NO paycheck.
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Just Sarah THINKING. Yes, this was out of her daily routine. She observed a need: the garbage can was still outside when she got home and from her own observation it is suppose to be in the garage. She thought. YES, she can think, thank you very much. She created a plan on her own of how to get that can inside. Usually the first thing she does when she gets home is change her clothes, so I am even going to say she recognized this could be a dirty job, that's why she is still in her already dirty work uniform. Once she got out to the tree lawn, she discovered the lid was full of water. So rather than put it on the can with water in the lid, she meticulously started to shake it, until all the water was out. Then she turned the can around so the wheels were headed in the right direction. Once it was secure in the garage, she immediately went to the bathroom to wash her hands. Then she took off her dirty clothes, left the wet pants in the laundry room, took the rest upstairs. She got dressed, came downstairs and made herself a snack, went back up to her room, turned on her laptop, checked her blog, put on her headphones, dialed up the Ipod that I still am not sure how to operate, and snuggled into her chair to relax. The old model did not take any of this into account.
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2009. What a great year to be a mom. Sarah's mom. No, it doesn't have to be a dirty little word. It does not have to be scary. Sarah is better prepared. Her thought process more activated, her desires more known, her independence visible. It's the system that is frightening. Old ways have to change. And yes, I recognize it is up to ME. I have to put aside my fears and fight. Fight for change. For Sarah. For Sophie. For Elijah who is not yet born. For all the adults with Down syndrome that will be walking behind us. Here's to the FUTURE.

34 comments:

Tsquared417 said...

Your post today gave me chills. You said it perfectly. Now go pave the way in Ohio so in 14 years it will be all set for Olivia and I won't have to do it! ;)

Junior said...

Sarah is quite an amazing and smart young lady

sturpin said...

This is something I fear. There is so much available to my little ones, but then they grow up.....and they aren't cute, sweet little ones anymore.

Karyn said...

Thank you so much for this posting. Someday I will get there - this is inspiring!

Four Wonders Mommy said...

Wonderful post! I have said it before and I will say it again. Sarah is such a true inspiration to the DS community. I love this blog!

stephanie said...

Thank you so much for fighting for Sarah and for my Emilia too. For showing me what's ahead, and that I better be ready to fight to change things for my little one.

Emily said...

Thank you so much for that post. I also got chills - very inspiring.

Beverly said...

what a great post!!! Thanks!

Lacey said...

Sarah is amazing and I know so inspiring to all of us moms with young downs kids. To see that their future is as normal as any other childs future. She can do whatever she wants to do.

Jen said...

Awesome, Joyce. Thank you!

Becca said...

Yes, thank you so much for posting that, Joyce. Beautifully put, and definitely food for thought. Sarah is truly an inspiration, and those of us with young children do cling to the hope of a bright future.

Mommyto2 said...

Thank you for this post. I needed it today. Sometimes when i think of my Sarah's future I get overwhelmed, but with you and others already paving the way it helps, but also shows me that I am paving the way for those that come behind me. I pray that I can continue to pave the way in your foot steps. Thanks!!!!

Robyn

Ann said...

Great post. Thanks for sharing. Caleb is still a little guy but I'm wondering what I can do to change the system...for everyone.

The Hortons...one day at a time. said...

AMAZING! I agree 200%! My son Malachi is only 10 months old and every day we make the choice to wake up and say "I will not put limitations on my son and I will not let any other person, law or organization do it either." Way to go Sarah you are such an amazing young woman and I can see you have anamazing mom!

Lisa said...

This post made me cry. So much to think about. Inspiration, optimism and fear all live side by side in my head.

datri said...

That was wonderful, Joyce. Kayla's only five, and I'm already thinking about her future. Kayla's IEP meeting is later in the week and I'm desperately trying to get her into a program that will be with her for life, not just until she's 21.

Scarehaircare said...

Thank you for making the future of The Love Magnet easier. I'm sure we weill be still on the front, fighting for something but it will be easier than it is now.

The Love Magnet wants to be a teacher. She talks about it at age 6. Oh yes, she is definitely thinking.

Monica @ Monkey Musings said...

I'm so glad we have you to help forge a better way for our kids. Sarah is an amazing and smart young woman and I know you're proud of her! Thank you for your thought-provoking post! I will do what I can for John Michael and his peers to have a brighter future.

Karly said...

What a wonderful post! Thank you so much for making the future a brighter place for all of our children.

Kimy said...

I just got goosebumps reading this post!!! You are such a great mom and advocate!!! It can be scary, thinking about the future. My Maddy is only a year old- and I wonder what things will be like when she's Sarah's age. I have a feeling that with Moms like you paving the way, it will be a much brighter future for our little ones. WTG!!!

Lisa said...

Thank you! What a great post. I have a 2 month old daughter with Ds. I'm enjoying every minute and looking forward to the future.

Michelle said...

Amen! Wonderful post; hope you had a great Mother's Day!

Mandy said...

I love reading about your thoughts on Sarah :)
I never wanted to learn the "foreign language" of IFSP's and IEP but now at times I feel like I've been thrown in face first. It's moms like you that give me hope for the future.

Monica said...

Joyce, Thank you for posting this!!! Sarah and you both are amazing inspirations for us all!!! You made some amazing points, I am actually printing this post for future reference!!Thank you~

Heather said...

Beautiful post Joyce.As I spend much of my time just getting Zoey from one moment to the next,I often lose sight of the future.When I come here and see Sarah I have hope.And although I know very well that Zoey may never be able to do the things Sarah is doing,Sarah still represents,for me,a picture of resiliency,courage and hope.I thank you for that.

Mel said...

Way to go Sara, and I too am working on not being afraid of the future. I hope Luke will take a leaf from Sara's book, and lead a full and happy life.

Karen said...

We're so very far away from that scary place that I tend not to think of it much. Yet. Thank you for being there to pave the way, to fight for our kids, to show the world that they're people too.

Dustin and Kelly said...

Joyce, there is no question that I am grateful to be a parent of a child with Down syndrome in this time. Though I know there are still many improvements to be made, parents like you, those with adult children, have fought and won so many battles which have paved a smoother road for my child will have a better chance in life. I thank you for that. I, too, will continue the fight. Thank you for sharing your's and Sarah's journey with us.

Kim Rees said...

Joyce, you always know exactly what to say! You are soooo right about the system and Sarah! Sarah is sooo far above many of their expectations. She deserves to have the opportunity to do a real meaningful, worthwhile job and have a great future. I worked with many MR/DD adults for 8 years before I became a teacher and I saw how many of them got lost in the system. I did work with one gentleman whose mother (like you) was his best advocate. He always had the best jobs of anyone I knew. He worked at Ponderosa as a bus boy for a long time and then at Roadhouse. When I think back of the days when I took him to work or I went to one of those places to eat when he was working it gives me great hope for the future with my Liliana. Yes, it definitely can be a scary thing but Sarah is well on her way to an awesome future and a good part of that is because of you!

girlinapartyhat said...

Joyce, how can I thank you? Not only for linking to my post about Sophie (I'm truly honored!) but all you and Sarah do with this blog and beyond.

I have to tell you that as soon as I posted "Ghost of the Future" I thought of Sarah and felt remorse, because of course I HAVE seen an amazing, high functioning adult with Down syndrome -- her. I've been meaning to write and tell you that Sophie's kindergarten teacher has become a regular reader of My Name is Sarah and just adores the blog. She often tells me, "This is Sophie! Sophie will write a blog a someday!"

So it's funny you read that post and had a different reaction, because I actually meant to email you to apologize.

I am sure you encounter the same ghosts I do -- other moms have told me they do, as well.

But when I think of the future, I vow that from now on I am going to try to think about Sarah, rather than those ghosts. I know that will serve me well. There are no words to thank you.

Love from Amy and Sophie

JennyH said...

Great post!! The future can be scary.

Hope you had a great Mother's day!

Perplexing Situation said...

Fantastic! It brought tears to my eyes. The time to start, is NOW.

Tricia said...

Wow. Thank you. This opens my eyes to our future. Something I have not yet been able to spend even more than a few moments on yet.

Meredith said...

Thank you for posting! Inspiring and 'real'. My kids w/ Ds are still little (2,3, and 6) but I love seeing a glimpse of the future through Sarah and my own friend Rachel that I grew up with. I hope you had a great Mother's Day!