Teddy’s Ts has never and will never purchase any supplies from Hobby Lobby. Be assured you are not supporting Hobby Lobby in any way by purchasing from Teddy’s Ts. Teddy’s Ts and buttons supports the right of women to have full access to health care.
We had a great time at the conference last week. It was so good to see old friends and to meet new ones. Heard some amazing presentations. First time Down syndrome has been so present at SDS. Engaging discussions about stigma of being a parent of a child with a disability. Powerful thought regarding genocide and holocaust and euthanasia and how it impacts the lives of people with disabilities today. Met Emily Ladeu – an amazing new blogger (http://wordsiwheelby.com/) – who will partner with Teddy’s Ts on an amazing new project. Hugged Ibby Grace (https://www.facebook.com/ibbyg/notes) so many times I can’t count. Fell in love with Doris Zames Fleischer (http://www.njit.edu/news/2012/2012-157.php) all over again. She says things in ways so few others can. Direct and to the point. And the amazing senior scholar award winner, Devva Kasnitz, my roomie and friend forever. I melt into her whenever I see her.
I can’t wait for next year when we all meet up again in Atlanta!
This monthly blog hop is a community project. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (below).
One truth (about Down syndrome/our lives with Down syndrome OR DISABILITY)
Having Down syndrome is not the end of the world. Life continues and is still full of wonder. Teddy is 30 years old and has a very good life and my life has been good because he is in it. Together we work his business. How many parents of 30 years old get along with them well enough to do a business together?
One tip (- information on something related to Ds/Disability/raising a child with Ds/Disability or just parenting in general)
Microenterprise is a great way to keep your young adult involved in the community. Think about things your child is good at while they are still young and nurture it so that someday it may be a source of pride, income, and identity as a business. Teddy loves politics and working for disability rights and creating tshirts and buttons was a perfect business for him. There are lots of opportunities for people with Down syndrome to have their own businesses, but honestly, a lot of the planning and ongoing work falls on parents.
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We have a new color and shape in our Label Jars not People shirt. We now carry it in lavender in a woman’s style. The sleeves are shorter, the waist a bit nipped in, and the shirt itself is a bit shorter – all for a more feminine look. Best of all, it is the same price as the yellow shirt. We are carrying it is sizes small to 3x. If you want it bigger we will be glad to special order it for you.
Because we want to encourage sales of this new shirt, we are going to be giving $3.00 to ONE21for each shirt sold.
ONE21 is a new, community wide initiative of parents, researchers, and other advocates for Down syndrome coming together for a common goal: to give DS research the support –and voice–that it so urgently needs. To help advance DS research to the next level, ONE21 is supporting the development of a dedicated and centralized DS biobank that will be open to all DS researchers, regardless of institutional affiliation.
A biobank is a large medical-grade refrigeration unit used to store high-quality samples of blood, tissue, DNA, and other specimens researchers need to build a more thorough understanding of DS. It is a critical tool in advancing research in speech and communications, congenital heart defects, childhood leukemia, early cognitive decline, thyroid issues, and others.
Toward that end, on September 6, 2013, the National Institutes of Health (NIH) launched the first national Down syndrome registry as a resource for connecting researchers with families and self-advocates willing to participate in research and clinical trials. Called “DS-Connect,” the NIH Down syndrome registry will also help researchers improve our overall understanding of DS as a condition with the health histories, symptoms, and diagnosis information that families voluntarily provide.
For decades, DS researchers have lacked commonplace tools and capabilities necessary to advance their work to the next level, including a national DS registry. Without them, we can’t move from basic research to clinical trials to drug therapies or best practices that can meaningfully improve the quality of life for people with DS.
We have so much to do, so many places to go, not enough time – conflicting needs. I hope I will be able to look back at this time some day and be glad for the time and that its passed. Juggling Teddy’s business with his Grandma’s care is next to impossible. The strain is hard on the business. But Teddy needs this lesson – the lesson that even when times are tough the tough get going. Life isn’t fair. Nobody promised you a rose garden. All those cliches. All true – sort of.
Please bear with us while Teddy is trying to find himself in this new way of being an adult. Somedays the strain shows on Teddy more than other days. If you’ve witnessed it when he’s been overwrought, please understand he doesn’t handle his emotions like a typical 30 year old. He’s making some pretty bad errors in judgement. He’s still a good man, just at times a man who has more on his plate than he can handle.
We had our best day yet at Eastern Market, Shed 1. I think the routine of getting up EARLY, driving into the city, setting up, and then smiling at countless customers who walk past and don’t even give him a glance is finally beginning to pay off. Being at Eastern Market is good practice for Teddy of what the mundane world of world can really be like. At conferences he gets a ton of positive feedback – and he needs that – but if someday he decides to abandon Teddy’s Ts and get a more typical job, he is going to need the skills he is learning at Eastern Market.
Come see Teddy at Eastern Market. He is in the original Eastern Market Shed – Shed 1. It is across the street and a block away from Shed 2 and 3. The Pottery Guy owns the shed, not Eastern Market – and he sells every kind of pot you can imagine. Lots of them your will never see at English Gardens – especially not at the price he sells them for. He also sells plants and soil and knows plants and will give you help. Want to buy a plant elsewhere and but the pot there? Get it re-planted, too. Also loads of decorations for your garden – some only for $1.00.
There is also a vendor selling Kettle Korn and handmade soap. The blacksmith is set up that makes garden stands and special orders. Another tshirt vendor, Detroit Street Apparel, is there too. Teddy’s Ts also has a create your own button table. Always wanted a button that said XXX? Nows your chance. Come draw your design on a button template and see it made before your eyes.
Well we went to Washington to the Arc conference and it didn’t go as well as we had hoped for. Teddy had pretty good sales, but not even half of what we needed to cover the costs. I didn’t expect to make a profit, but I was hoping for more. Next year is in Louisiana and we have to figure out a way to get some of the costs paid for by someone else.
Our presentation was brief to say the least. We followed a group of 4 who were supposed to present for 40 minutes, but went over. Than the next presentation went over too. So when it was our turn we had to switch over to our powerpoint and we got hijacked by one of the other presenters. We had planned to start our presentation before the slides – expecting Teddy to show off his shirts while I did the tech. That sort of happened, but not quite the way we planned. We got through 10 of our 17 slides and then the hijacker just pulled the plug. If I sound a bit peeved, I am. It was a big commitment for us to be there and we did it in part to present.
But what really has me unsettled is that the same person who hijacked our presentation also made some really horrid comments about me. One of the people who told me about them said don’t be bothered by them, she is just projecting. She said I was making Teddy retarded. I was keeping him down. I’ve done a lot of soul searching and just can’t see it. I know there are a few family idiosyncracies that are a bit immature, but I think all families have those. (I call Teddy ‘baby bear’ is the worst I do.) So I am trying to forget this and move on, but for the time being it’s still leaving a bad taste in my mouth.
Added later: I spoke to Teddy’s cousin about this and asked her what she thought. She got enraged rather quickly and said I did a few weird things, but I pushed Teddy to be his best. I evidently kiss Teddy too much. She says on the mouth, but since I deliberately avoid doing that and kiss him on the nose, I’m not so sure about her observation. I shouldn’t let this bug me, but it does. I need to figure out how to put some closure on it.
This blog hop is a community project of Down syndrome Blogs and the T21 Alliance. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (below)
One truth (about Ds/our lives with Ds)
One tip (- information on something related to Ds/raising a child with Ds/or just parenting in general)
One Truth about Teddy and his Ds!
Teddy is amazing. He never ceases to amaze me. Everything I was told about Teddy’s future from the geneticist never came true. He is more than what anyone ever imagined he could be. 30 years ago Down syndrome was a really scary diagnosis. I didn’t really fully understand what it was, but I knew it wasn’t good. Thank goodness I got to know Teddy before I got to know the geneticist.
I would love to go back and tell the geneticist….Yes, Teddy was potty trained! Yes, Teddy learned to talk! Yes, Teddy went to school! Yes, Teddy learned to ride a bike, roller skate, swim, and use a computer! Yes, Teddy graduated from high school! Yes, Teddy went to college! Yes, Teddy has his own business! Yes, Teddy lives in his own apartment! YES, YES, YES!!!!!
One Tip from raising Teddy!
Teddy perseverates and procrastinates, so learning patience was a necessary virtue. Not sure at what point I figured this out, but if Teddy doesn’t want to do something, he isn’t going to do it. (Maybe it was when he decided that to pee in his clothes, preferably his snowsuit, was a great way to avoid going where he didn’t want to go.) So I learned to stop wasting time. I read a book, watch TV, file my nails, balance my checkbook – whatever – and wait until he is ready to do what I want him to do. I get stuff done. He isn’t so angry at me. And life continues on. At a little slower pace, but it works for us.