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 31, 2010

All's Quiet this Weekend

We have all been so busy with work and sports and the new store, we decided to have a really quiet weekend.

I helped my mom make stuffed shells on Saturday. They were really good.

Then we had movie night. We watched Dear John. It was good. We love Channing Tatum ever since he was in Step Up. My mom thought it was a good movie to watch for Memorial Day weekend because it does remind us of the sacrifices families must make when their loved one is in the military.

Then today we decided to take all the bags we have saved for recycling up to the bin. We have a lot of them.

While we were driving I was making jokes and my dad was cracking up.

Now check this thing out that is plugged into the cigarette lighter. I hate smoking. Do you know what it is?

Look. It hooks up to my iPod and then we can all listen to my music on the car speakers.

Let's see. What song do I want them to hear?

First we went to Microcenter and bought new printers for the office. One of the old one's died when the power went out during a storm. Then my mom had to run into the store real quick so my dad and I sat in the car. I started singing really loud. My dad says that is his best memory of the whole weekend.
When we got home, I could not wait to have a little brownie we made. I put the red and blue sprinkles on. It was fun. I think we are all ready to go back to work tomorrow.

Sunday, May 30, 2010

2010 Webby Awards

I have been following this show for awhile. Have you watched The Specials? It is a really cool reality show that follows the real life of five young adults with Down syndrome who are housemates in Brighton.

I told my mom and dad last night that I want to move into my own apartment. They thought that was a good idea in a few years. First I need to finish up my job training program and graduate next year.

You can read all about Lewis, Hilly, Sam, Lucy and Megan on their website. I really like Megan's haircut. I think I'm going to get mine cut like that.

The best news is the show just won two Webby Awards.

We won a Webby! from KADA Films on Vimeo.

Friday, May 28, 2010

Me and Mr. K.

Last night at the graduation, Mr. K came out to see me. I am not speaking to him. I haven't been for a while.

Mr. K. used to be my job coach in VAL. That stands for the vocational adjustment lab. I used to have a crush on him but then I saw him talking to another girl and I got mad. I came home that day and threw my backpack on my bed and cried. Then my dad told me he is married. That was horrible too.

Mr. K. says we can be friends but I am still mad at him. My mom tried to explain that she had a crush on her 6th grade teacher. His name was Mr. Breen and he wore purple shirts. He would let her create the bulletin boards in his classroom. Then one day he asked another girl to make one. And my mom got mad too. She says I need to move on, but I still think Mr. K is sooooo cute. Maybe next year I will talk to him.

Thursday, May 27, 2010

You can Call me Usher

Lol. Did you think I was talking about The Usher. No. Tonight was graduation for the job training program I am in. I was asked to serve as an usher.

So here I am at my post. My job was to pass out the programs.

First I would say hello. This was a fun job. I got to see lots of people I know.

Like Amanda. She is friends with my older brother TJ and his girlfriend Julie. She was here because her friend Sara was graduating tonight. So she came over to see me.

I had to get back to work though. Lots of people were arriving.

Then Mr. Kabat came to see me. He is from my high school. He coordinates all the paper work and stuff so I can be in this program. My mom LOVES him.

Well here they are...the graduates. I have lots of friends in this picture. Congratulations to the CEVEC class of 2010. Next year I will be up on that stage.

Blood Work is A-OK

This is me this morning sitting at the top of the steps. Listening.

My mom was talking to the doctor about my blood work. Remember last Friday. The last test showed there might be something wrong with my white blood cells. And my thyroid. So I had to have the tests repeated and they added a few more.

Good news!!! Everything is A-OK. Ahh...relief. I just have to go back in six months and have it done all over a again to make double sure. Thank you to everyone who was worrying about me.

Tuesday, May 25, 2010

No More Celebrity Gossip

My mom dropped me off at Verizon today.

I had to go in and have them fix my cell phone. My mom says she is not paying $9.99 each time I download celebrity gossip anymore.

It took him awhile to figure it out.
Yes!!! Now it is working. My mom showed me a few websites I can check on my laptop to see what the celebrities are doing for free.

Monday, May 24, 2010

Direct from Minneapolis

This weekend was the...

in Minneapolis, Minnesota. This is where quilt shop owners buy fabric for their stores. I did not go because we have decided it is just too difficult for me to fly with my breathing issues. Not to worry. Direct from Minneapolis is...

working straight out of his suitcase...fresh off the airplane...ModaMark.

No that's not his real name. That's his nickname because he is our sales rep from Moda. And he was nice enough to bring the show to us today. We met in the kitchen at my dad's office because we can't get into our store for a few more weeks.
First off, Mark gave me a little gift. I was very excited because it is...

FANDANGO!!!! The newest collection designed by my friend Kate Spain. How awesome is that!!! Hmm...notice the new size? It is called a candy bar. A new twist to the Moda Bake Shop.

Then Mark showed us all of Fandango. We ordered the entire collection. All 40 fabrics and nine matching flannels.

Then Mark brought out a bunch of new fabric. It was a little overwhelming.

Oh I like this one. It is called Dream On by Urban Chicks. I love the PJ's in the picture. I want to make some of those.

Oh here is my favorite I think. It is called It's a Hoot by Momo. My mom really liked it to.

Then came Happy! But guess what? I was not happy. Just kidding:) Check out this post. I love the dog. We ordered this entire collection too. Then it was time for me to go to music therapy, so I had to say goodbye. My dad took me so my mom could stay with Mark and get all the paperwork finished. The fabric we order today will not be arriving until September and October, so I have to wait a while.

It was nice to meet you Mark. Thanks for coming and for my candy bars:) Oh I forgot to mention the other one in the box was Breakfast at Tiffany's. But you can't really eat that one either. Ok gotta go.

Sunday, May 23, 2010

Being held Hostage by DME Coverage

Twenty Years Joyce

Sarah's trach was placed on May 2, 1990. The procedure itself was smooth. She had her usual difficulty coming out of the anesthesia and it took a few extra days to get her O2 sats were they should be. John and I learned trach care. How to clean it, change it, things to watch out for. We quickly became experts with the equipment we would be bringing home. One to monitor her oxygen level. One to make sure she was breathing as she slept. A mist machine to keep her airway moist. We had a crash course in well...crashing. Performing CPR on a person with a trach is a little different because they do not breath through their nose and mouth like we do. I prayed I never had to do that again. I felt like the first time took ten years off my life.

You may recall from a previous post that I had hoped to be home by Mother's Day. For some reason that was important to me. We did not make it. We celebrated the day by eating dinner in the cafeteria at the Cleveland Clinic.

A few days later we were ready. Sarah was stable. We had passed our night of observation that demonstrated we could handle things at home. There would be no help. Our insurance did not cover nursing care. We knew that. And truthfully, without having any knowledge of what our life was about to become we had no way of knowing that should be a concern. I started to pack things up and take them home with me each trip I made. It is amazing what a family can accumulate in one hospital room over one month. I had that feeling of, this is it, when we leave here we live happily ever after.

Then the social worker walks in. She sits down. "We have run into a snag," she informs me. "Your insurance does not cover durable medical equipment." "What's that?" I ask. She explains it is the part of an insurance plan that covers the equipment that is needed at home. In our case it would be the suction machine, the tanks of oxygen, the heart monitor, the additional trachs, the mist machine and the bottles of saline to go with it. "I have spoken with the company we often use and they are going to give you a price reduction on the items they can. It will be $493 per month (remember this was 1990-today it would be well over $1,000). They need the first month's payment before they will deliver. If you can give them a credit card they will have it to your house this afternoon. Can someone be there to receive it?"

I could feel the blood rising to my head. "We do not have $493 for this month or next month or the next month," I expressed loudly. "I am the sole bread winner for this family and I am just trying to keep a roof over our head and now how the hell am I suppose to come up with 493 dollars a month." Sarah started to cry in her crib. I went over to pick her up, instead I just stood there and looked at her. All of a sudden I was scared. Scared. To. Death.

The social worker said she would look into a few things for us. She needed a pay stub. Oddly enough the day before was payday, so it was still in my purse. She said she would need one from my husband too. I snapped at her. "Didn't you just hear me, I said he isn't working." With that, she left the room. I didn't know what I was suppose to do. Were we going home or not? I scooped Sarah up and sat down in the rocking chair. I was so confused. I just did not understand why this was happening to us.

An hour or so later, the social worker came back in. She told me that I made too much money for Sarah to qualify for Medicaid. She was checking to see if we could get assistance from BCMH, the Bureau for Children with Medical Handicaps but it takes a few days to get approval. "A few days!!! And what are we suppose to do in the meantime?" I asked. "You will have to stay here," she said. How crazy is that. Insurance will pay for us to stay in the hospital but not pay the lousy $493 for the equipment to go home. I felt like we were being held hostage by this equipment coverage.

BCMH denied coverage. I was ready to just quit my job too. But then how would we make the house payment. The four bedroom house we had just built before Sarah was born, on two incomes. Now we had one income and already one credit card maxed out with medical copays and prescription charges and parking fees and everything else that goes along with staying in a hospital for four months. Whatever were we going to do?

John and I resumed the pattern we developed. I stayed at the hospital during the night and he stayed with TJ at home until morning. Then he would take TJ to daycare, drive to the hospital to switch off so we didn't have to pay for parking. I would go home, quickly take a shower and drive to my job at the United Way in Cleveland.

That afternoon as I was walking down the hall at work, Ken, the Human Resource Director stopped me and asked how things were going. I shared the dilemma we were facing. He seemed surprised to hear what I was describing. He was rather new to this position having come from the corporate world where benefits were often more generous than the not-for-profit environment. I went about my business of the day. I had learned to become very focused on getting my job done, as I had to pick TJ up from daycare in time to feed him dinner then get back to the hospital so John could get him in bed at a decent time.

A while later Ken stopped by my office. He shared his department had placed a call to Kaiser Permanente, our insurance carrier, and they were willing to add the durable medical coverage and make it retroactive to the beginning of the month, so the rest of this month would be covered for us. I was shocked. I jumped up and planted a big kiss on this man's face. Definitely a no-no in the work place and so out of character for me, but this news was beyond exciting. It was thrilling and now we could get our baby girl home where she belonged.

I thanked him over and over. And then I called the social worker at the hospital. She was even more stunned than I. She said in all her years she had never had a company add coverage for just one family. And that's when it hit me. The larger significance. Yes this was for Sarah, but it was also for all the other families that have this same coverage. When the next person needs durable medical equipment, they will not encounter this situation. And that gave me a feeling of satisfaction.

I called John and told him we were coming home. He could not believe it. "How," he questioned. "I'll explain later," I told him. He waited at the house for the delivery of equipment, which arrived about the same time I pulled in the driveway with Sarah.

It was a glorious feeling to be home. Home for good. Or so I thought.

24 - Hour a Day Care

Twenty Years Ago Today...from Great Grandmother Hillick's journal...

Friday, May 21, 2010

Beauty, Bloodwork & Batiks

It was a beautiful day. The flowers are in full bloom in front of our house.

I had to go out and smell them when I came home from work.

My mom asked me to stand up so she could take a picture. Look at how I am holding my arm. I had no idea at the time that my day was about to turn bad for that arm.

My mom told me we had somewhere to go. As soon as she got off the freeway, I knew we were heading to the Cleveland Clinic. I had to have more blood work taken. There is something wrong with my white blood cells. This time I was very brave and I did not cry or even scream. But it hurt, so now I am really holding my arm. As we were leaving, my mom said she had a surprise for me that would make me feel better.

Two more boxes of fabric arrived for our quilt store. Yippee!!! They are all from the Majestic Batik collection by Moda. There are many different colors.

Look at how this purple one matches my hoodie. Perfect. I'm feeling better all ready.

Thursday, May 20, 2010

Would You Punch Over It?

from Joyce: the Down syndrome world is a buzz over last nights airing of "What would you Do?" (it's posted below if you have not seen it) People are leaving comments on many websites. One that I keep reading over and over is, "I would punch the guy..." Well, let's not forget the story of the loving brother who did punch the bully for continually calling his girlfriend a "r#tard." And let's also not forget that he ended up being charged with assault in the first degree. Yes, we do need to stand up to bullying behavior, yet please, let's just use our words.

FYI, Matt's sentencing hearing is this coming Tuesday, May 25th. We'll let you know how it goes.

Who Stops Grocery Clerk Abuse?

Wednesday, May 19, 2010

Tuesday, May 18, 2010

Final IEP ~ It's Exciting & Positive

continued by Joyce... then as quickly as I gave my little tirade of disappointment, I quickly stated that I cannot be bogged down and dwell in the negative. I only have so much energy and although I could use it to fight the system (County board of DD) I have chosen to use it to provide opportunity. The future is what we make it. It's exciting and positive.

I then told them about our quilt store and having the table at the business expo on Wednesday. I told them about Sarah being so excited about this venture. I shared my thrill of watching her interact with members of the community.

Sharing with them what we are doing. Talking about Kate Spain, her favorite designer. Showing them Kate's fabric. I observed her introducing herself to adults she had never met. Talking with folks in the exhibitor's lounge as she ate dinner. I told them about my father making the comment that this is such a great opportunity and one that few individuals with Down syndrome ever get. And I told them that next year, I hope to have a few more employees with me who also have Down syndrome. I can't change the world, but I can make a difference for a few.

I refused to allow this final IEP meeting taint our view of the future. I so believe in the power of positive thinking and that's where I left it. As Sarah and I walked out of the room, I left my disappointment in the system that I had hoped would provide a better opportunity, behind. I expressed my appreciation for all that CEVEC has provided Sarah. We did see tremendous growth in her maturation each year that she has been in this program. And for that I am grateful. I just wish it did not have to come to an end.

As it turned out, we barely had time for lunch. So Sarah's teacher/job coach asked me if I would like to drive her directly to her job site. I was thrilled. Sarah has been so excited about her work this year. Every night at dinner, she tells us about packaging bread. It has become a ritual that John asks, "One slice or two?" Although we really did not have a clue what she was really doing.

After a quick stop in the Wendy's drive-thru, I enter the freeway. Once Sarah gets her bearings, she directs me from there. She tells me what exit to take, what turns to make and then advises me to get in the left hand turn lane. Once she sees the building she instructs me where to drop her off and then where to park my car with 100% accuracy. I was feeling pleased.

Once we walked into the first set of double doors, Sarah knew exactly what buttons to push to get us further inside. We walked down a small hallway, then entered a larger seating area. If you were asked to imagine in your mind, two sweet white haired senior ladies, they were sitting before us on the couch. Sarah walked over to them, stopping just short of stepping on their toes, and said "Hi" as she used her hand to motion hello. They both looked up, big smiles on their faces and said, "Hello darling." Sarah asked them, "How are you?" and then told them she had to go in to work, pointing to the dining room. It took several blinks, to keep my eyes dry.

Once in the dining room, Sarah put her coat where it belonged and proceeded through the "in" door into the kitchen. With extreme confidence, she walked to the very back. I followed, not really sure that I should be in the kitchen, but I definately did not want to pass up this opportunity. She went straight to the closet with the hair nets. At this point, a woman came out of the office and said hello to Sarah. I introduced myself and she then went on and on about how much they love Sarah and what a great worker she is. She then asked me to come to the office where I met the director of the Meals on Wheels program who also could not stop heaping the praise on Sarah and her dedication to her job. I was of course bursting with pride.

I quickly told them about our blog and asked if I could take a few pictures. They were more than accommodating, walking with us to the various stops before getting to Sarah's station. As I turned the video on, one of the cooks yelled out, "Sarah, you're going to be famous." She got a grin from ear to ear. And I thought to myself, "Incredible, I have just witnessed what community based employment is all about." Here I was observing Sarah interact with typical workers and seeing first hand the sense of pride and accomplishment she has in what she does. And at the same time, they were observing what she could do.

About this time, the woman who I had first encountered came back over to make sure I saw the entire cart of bread Sarah had completed the day before.

She then told me the worst thing will be this summer when Sarah won't be working. I asked her if we could volunteer a few days a week. This time it was her grin that was from ear to ear. "We would love that," she stated.

Monday, May 17, 2010

Last Call...thoughts on a Final IEP

On Friday, we had Sarah's final IEP. I already knew what was going to be in it. And I had emotionally moved on. Or so I thought.

When we walked in the front door of CEVEC, there was a nice display in the lobby describing the various programs offered. And right there on top was a beautiful photo of Sarah's smiling face, proudly wearing her CEVEC Industries tee shirt. I felt my chest tighten a tad. Something about it bothered me. I guess I didn't like the message of this happy young woman being prepared for....a place at a sheltered workshop?!? I shoved those feelings of disappointment down as quickly as they arose.
We were the first of the IEP entourage to arrive. John had already determined that he would not be needed at this meeting. He had taken several hours off last week when we met with Sarah's support administrator from the County Board of DD. That proved to be a wasted afternoon. Just a recount of the same old story. No jobs, no money, no services unless of course we should both die, then rest assured Sarah would move to the top of the list.
Sarah and I sat down at the big table. I expected this to be the quickest IEP meeting of Sarah's lifetime. I truthfully didn't even care what was in it. I had already told the representative from our school district that my only goal for Sarah her final year, was to be HAPPY. If there is no future community placement for her, why waste time on meaningless goals. I was so confident this meeting would be quick, I didn't even feed Sarah before we left the house. We should have plenty of time to catch lunch before she had to report for her afternoon shift at Myers Apartments.
While we were waiting, a few of the job coaches came in to say hi. The staff here is the best. Always friendly and looking for the best in each student. Soon Sarah's lead teacher/job coach, the representative from our school district and an administrator from our district walk in. I was not expecting to see the administrator, Mary Lou. I have always liked her. She is a straight shooter, follows up when she says she will, and does seem to genuinely care about the district's students. Still, I was surprised by her attendance.
Copies of the IEP were passed out. There was very little on it. Fine by me. Not by Mary Lou though. She wants greater details, she wants words like "professional" spelled out. She wants this document to be a thorough review of Sarah's work abilities. She was making the teacher/job coach squirm. I was finding some odd pleasure in how this was playing out. This our final IEP, our 17th IEP, and it was not me demanding greater detail, pushing for more in-depth goals, it was an administrator of our school district. The irony of this was amusing.
Mary Lou asked about next year. What will Sarah be doing? "We had the perfect placement for her at JCC, but Mrs. Ely said it would not work out because the students clean the daycare toys with bleach." Huhhhhh....What I'm the bad guy all of a sudden because I put the brakes on the idea of having Sarah suck in bleach fumes everyday. We eliminated bleach and all toxic cleaning chemicals from our house years ago, so that Sarah might live. It's what families do when they have a child with severe respiratory conditions and acute asthma. Darn, I'm starting to regret John not being here. We have become so good over the years of playing good cop, bad cop in these meetings. He would have said something like this without flinching, "Not exactly a perfect placement, if you'd thought about it." I become to timid to be confrontational.
That is, until I heard the words again from the phone call..."we are over training them...there is no where for them to work when they leave here." And that's when I lost it. I could no longer hold in my frustration, my displeasure, my anger. So I simply stated, "You know, I just have to say that it is really frustrating for a parent to hear you say that. Sarah is going to be OK, we have resources to provide opportunities for her. But what about the other parents who don't? How do you think that makes them feel? They have worked, like I have, to provide the best opportunities for our children to prepare for their place in the community. And now you are telling us it just doesn't matter..."

Friday, May 14, 2010

One Slice or Two

I am going to show you what I do at work.

This is the building where the bus drops me off.

It is called Myers Apartments. It is a place for older persons to live.

I work in the kitchen. The first thing I do each day is go all the way in the back to get a hair net.

I have to pull my hair back and tuck it in.

How do I look?

Then I go into the next room and get my gloves.

I wear a size medium.

Then I go ask what station I will be at today. It is usually packing bread or cookies. Today it is bread. So then I have to ask, "One slice or two?" It depends on what is on the menu. I have to go into the supply room and get a paper liner for the tray. Then I go into the freezer to get the bread and the butter.

I spread the pieces of bread out.

That makes the job of packaging easier.

Then I put one bread into the package.

And one butter. Then I tear it off.
I put the open end into the sealer. I have to be careful because it is hot. Then I push the handle until I hear it buzz. Then I take out the package and turn to put it on the rack.

Look at all these breads I did. I love doing this job. Below is a little video of me in action!!