Step Up for Down Syndrome 2016

Wow, it’s our fifth year doing the Step Up for Down Syndrome walk! Hard to believe…

As much as I hate fundraising, I step out of my comfort zone and do it for this event because I feel strongly about what (and whom!) it benefits.

In short, it benefits Down Syndrome Connection of the Bay Area, whose goal is to empower, inspire, and support the Down syndrome community in the Bay Area and the people who love them. DSCBA is funded completely by grants and donations, so this annual fundraising event accounts for a lot of the money they use to fund their programs and services.

Can I tell you a bit about what they do? That way, if you want to donate, you’ll know what your money is going to. I’ll just hit on a few of the highlights, in my personal opinion as both a mom and an employee of the organization.

  • Peer development classes. These are developmentally appropriate classes for people with Down syndrome. Sam will be joining his first one in September, and we’re very excited! At his age, they work a lot on school skills, social skills, and practical skills for the age group…but all done through fun activities!
  • Communication Readiness Program. This is that awesome speech-intensive program Sam participated in over the summer. I cannot tell you how pleased we were with it—Sam regularly puts together two- and three-word phrases to express himself, which he wasn’t doing before the program started.
  • Communication lending library. Along similar lines, DSCBA is heavily devoted to helping people with Down syndrome communicate in whatever method is best suited to them. For some people with Down syndrome, that means using assistive communication devices, and DSCBA maintains a lending library of such devices and will teach children, parents, and educators how to use them to help the person communicate. Sam is currently borrowing one, and he is now actually going over to the counter and grabbing it when we don’t understand what he’s saying and he thinks he can use the device to tell us what he needs. Exciting!
  • Down Syndrome Education Alliance. The DSEA has given abilities awareness presentations to more than 3,000 students in eleven schools in the past two years, and they have trained more than 1,400 educators on how to effectively include, educate, and enjoy students with Down syndrome.
  • Medical Outreach Alliance. This one is near and dear to my heart, since I’m the coordinator! We have established relationships with thirty-two area hospitals so that they can refer new DS families to us for support and services. I’m currently rolling out a program where we offer trainings to people in the medical field on current information about DS and how to deliver a DS diagnosis.
  • Advocacy support. Guess who’s going to be in our corner if we have to battle the school district about Sam’s kindergarten placement? The DSCBA offers parents information and support to help them as they navigate their child’s IEP process (which, as any special-needs parent will tell you, is daunting!).
  • Future Connections. This program is still in development, but I’m super excited about it even though I’m not actually part of the team and it’s a ways off for us. The program is designed to identify adults with Down syndrome’s areas of interest and strength with regard to employment, and then help them find meaningful employment. The old model of employment was sheltered workshops, where people with disabilities were completely segregated. That’s being phased out in favor of integrated employment, but it still generally tends to be “You can be a bagger at the grocery store!” Now, there’s nothing at all wrong with being a bagger at the grocery store if that’s what a person enjoys doing, but if that’s the only employment option that is offered to people with disabilities…well, that’s a problem. So there is a movement gaining ground to help people with intellectual disabilities do what the rest of us do: Think about what they enjoy and are good at, and put those skills to work in a job they actually enjoy. I would love to see this be the norm when Sam is of employable age!

There’s so much more they do in terms of support, outreach, and advocacy, but those are a few highlights. So, if you’d like to help support this wonderful organization, come walk with us in Pleasant Hill on October 9th! Or if you can’t walk with us but you want to join us in spirit, feel free to donate to our team! No donation is too small—whatever you are comfortable with is very much appreciated.

This year, the Quest Foundation is actually matching all donations dollar for dollar, so whatever you donate will be doubled. And Chris and I are doing a little game where each week, we put the names of that week’s donors in a bowl and let Sam draw a name. Whichever name Sam draws, Chris and I match that person’s donation. And because Chris’s excellent employer does a donation match, they end up matching it, too! So you could potentially quadruple your donation. Our winner today, for example, had donated $50. Factoring in the Quest Foundation match, Chris’s and my match, and the Genentech match, that donation is now quadrupled to $200. Wheeeee!

Anyway, click here to donate or join our team!

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