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Tuesday, October 25, 2016

Here I Am

There is a campaign in the UK about bringing awareness about people with disabilities called Here I Am.

From their website:

1.4 million people in the UK have a learning disability. We want a world where all people are listened to, valued and included, and not discriminated against because of their learning disability. Our challenge, alongside people with a learning disability and their families, is to make this world a reality. But right now, people with a learning disability face inequalities in every area of life.

You can read the stories on several different people who are featured in the campaign and find out about their interests, or how their disability affects their life.

Casey, a DJ, shares his mixing skills in this video where he takes the words from a doctor (said in 1968) that a person with Down syndrome is not a person, and makes a mix song.
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Monday, October 24, 2016

If We Won the Lottery

A couple of months ago we were talking about how high the Powerball jackpot had risen ... and of course how nice it would be to win that amount of money.

Lucas chimed in talking about different amounts, "What if the Powerball was x million dollars? What if it got to be x billion dollars?!"

This led to him talking about if we win how we'll each get x amount of the money. I don't remember the exact amount now, so I'll just throw at a nice even number, "If the jackpot was $800M we would each get $200M!" (Never mind about the choice between lump sum or yearly payouts, and all the taxes involved would reduce that $800M significantly!)

And then Joe told him, "Well actually, Kayla wouldn't be able to get that $200M."

Lucas, looking confused, "Why not?"

A quick explanation about how people with disabilities can't have more than $2K or they won't be eligible, or will lose out on, some benefits they might need to live independently.

Lucas, "That's not very fair." followed by, "Well if we ever do win the lottery we should just move to another country that doesn't do that so Kayla can have the money too."

Like most 8 year olds - and children in general - we often hear from him that something 'isn't fair' and we frequently respond with that cliche that no, "life isn't fair."

But this time I agree with him - it isn't fair that people with disabilities can't have more than $2K in assets and I wish that planning for her future didn't have to involve so many legal guidelines.

Although, if Kayla ever came in to $200M maybe she could say to heck with the federal benefits!

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Sunday, October 23, 2016

DS Connect: The Down Syndrome Registry

If you are the parent of a person with Down syndrome, or are an adult with Down syndrome, have you heard of, and have you registered with, DS Connect: The Down Syndrome Registry?

I've blogged about this registry before, but just in case there are new parents out there who have stumbled on my blog I wanted to mention it again.

The registry is maintained by the National Institutes of Health and has many consortium members to include (in no particular order) the NDSS, NDSC, SO, GDSF, DSAIA, DSI, IMDSA, LuMind RDS, and JLF.

The registry is where individuals and professionals can set up private accounts and be connected for research studies. You control the information you put in the registry via a secure and password protected account.

Researchers can access de-identified aggregate data to identify target populations for study or trial planning/recruitment.

The goal is to have 10,000 families registered and they are still well short of that goal, but are making some progress (almost 3500 registered families).

Here is the FAQ page to answer many more questions.

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Saturday, October 22, 2016

When Kayla Met Kayla

In 2010 we attended the NDSC annual convention in Orlando and had a great time meeting up with friends and making new friends.

At one point Kayla and I were in the bathroom and she was taking her sweet time washing and drying her hands. I called out, "Hurry up Kayla!" and that's when someone else replied and said, "That's my name, too!"

So Kayla and Kayla were introduced.

I wish I had taken a better picture of my Kayla, and had more time to talk to this other Kayla, but I didn't want to take up anymore of her time - and we were all going back to the Friday night dance.

A few months ago I saw an article announcing the NDSS Self-Advocate of the Year award and I realize it's the Kayla I met six years ago.

I asked Kayla if she would guest post on my blog for Down Syndrome Awareness Month and she provided me with this post that was also on her blog. Kayla is also the Assistant Site Coordinator for Gigi's Playhouse in Syracuse.

Thanks Kayla, for sharing about yourself and guest blogging!
The month of October is Down Syndrome Awareness month.  We like to celebrate the awareness of Down syndrome and to let everyone know our abilities and to let them know that we are pretty much capable of doing anything we set our minds to.
I would like everyone to call us Differently Abled as opposed to retarded (hate that word) or handicapped (almost as bad) or Intellectual Developmental Disability (sounds like Science to me) because I think every one of us is Differently Abled in some way, say you can't cook and my mother  can, or you can't drive a car and I can, or you can go to college and oh yeah I can too but maybe someone else can't but they can do something else that you or I wouldn't be able to.
We have the same wants and dreams as everyone else. We can do anything anyone else can do. We are MORE ALIKE THAN DIFFERENT  I drive, go to college and have 22 credits toward my Associates degree. I have a job at Gigi's Playhouse and Paparazzi Salon and Day Spa and intern at Congressman  John Katko's office. I have a boyfriend. My friends that are Differently Abled do many other things equally as well, my friend Johnny is self taught and plays the Bagpipes, my friend Byron can sing like nobody's business, my friend Carrie is a Zumba instructor, the point is, don't squash our dreams. We all have the same abilities as everyone else, we may take longer to do them, but that is more than okay. We just try our best and our hardest. That's what we want everyone to know.

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Friday, October 21, 2016


Kayla relished being in the roll of big sister when Lucas was a baby. She immediately wanted him to go to her room to play the day we came home from the hospital! She loved watching him reach all those milestones of first smile, coo, laugh, crawl, walk etc. So it's surprising to ask her now if she wants us to have another baby because she responds with an emphatic "NO!" Maybe she flashed back to all those times of hearing him cry :) Lucas wants us to have another baby though; I think he really wants to be the big brother - although he says he just wants another boy in the house to play with.

Of course as they've gotten older their relationship is like most sibling relationships - they play, they fight, they get on each other's nerves, they make up, they share, they love each other. He's 4.5 years younger, but in a lot of ways he's her protector. I hope they will always remain close and be there for each other.

The International Down Syndrome Coalition has been doing a daily photo challenge for Down Syndrome Awareness Month with a different theme/topic each day. Today's picture theme is "Siblings".

As I was perusing the hundreds of photos I have I realized I have so many favorites of Kayla and Lucas together. Here is a small sampling of just a few of my favorites.

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Thursday, October 20, 2016

Thinking Ahead to College

When Kayla was born, only 13 short years ago, I had no thoughts about college for her. I was still grappling with the diagnosis itself - forget thinking that far ahead to the future! Well that future is getting closer every year.

I'm not sure when post-secondary programs for students with intellectual disabilities became a reality, but I don't think there were many colleges or universities offering such a program only 13 years ago.

But now? The past several years have seen an explosion in these type of programs (the most recent statistic I remember reading put the number at over 200 programs). Post-secondary opportunities are now a realistic option for students with intellectual disabilities to continue their learning after high school.

Here is a great article on just one such program at the Virginia Commonwealth University. Even though there are now over 200 programs, as Seb Prohn, Ph.D and program coordinator at VCU pointed out, "Our best estimate is, despite the national momentum, that around 4 percent of four-year universities offer a pathway to college and a career for individuals with ID. Traditionally this group, like many others, has been excluded from higher education. The effects of exclusion are apparent in unemployment numbers and many aspects of inclusive community living." VCU must be doing something right as about 88% of it's program participants have obtained paid employment within 6 months; nationally the employment rate for people with disabilities is 32%.

Think College is an excellent resource for all things relating to college options for students with intellectual disabilities. Their website is a wealth of information from searching each state for programs, to comparing programs, to providing training and many other resources.

There are 5 options right here in South Carolina; and when we found out Joe would be stationed here after his deployment I was excited about the prospect of Kayla attending the REACH Program at the College of Charleston (CofC); and Kayla was only in 1st grade when we moved here!

After attending the NDSC Convention in Orlando this summer I think CofC might have some competition! I visited the booth for the University of North Carolina Greensboro and talked for several minutes with a currently enrolled student and her life and college experience, and then for several more minutes with a director of their program Beyond Academics. I came away very, very impressed with their program and put it on my list as an option for Kayla.

UNCG is also one of only 34 programs nation wide approved to participate in federal student aid programs. For a program to be eligible to accept federal student aid for students with ID the program has to be designated a Comprehensive Training Program by the US Dept of Ed.

Since Kayla also won a scholarship a few years ago, and all these opportunities opening up for students with ID to attend college, it's looking more and more like a reality for Kayla's future.

Whether I'm going to be able to cut the string and leave her on her own in a college environment or not will be seen when we get to that bridge! Ha! Honestly the thought of that makes me very nervous (ok terrifies me actually!) especially in another state...I have a several more years to get used to it...but I also know how quickly those years will pass!

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Wednesday, October 19, 2016

The Case for Inclusion

This opinion piece in the Reno Gazzette-Journal titled Schools Need to Stop Segregating Children With Disabilities hits the nail on the head.

I could have written this about my own school district; and I have written about many of these same statistics and reference points for inclusion such as -

- Numerous studies over the past 30 years (40 now, I believe) show that students with disabilities being educated in an inclusion setting perform better than their peers with disabilities who are educated in a segregated setting

- Higher graduation rates in districts that have higher inclusion rates

- Inclusion benefits the students who don't have disabilities, too

- Students would remain at their neighborhood school instead of being bused to schools farther away

I am glad that Kayla is now in a school, albeit private, that believes in inclusion; but I still wish our local district did a better job in the public schools.

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Tuesday, October 18, 2016

Every Student Succeeds Act Webinar

In Oct 2015 President Obama signed into law the Every Student Succeeds Act (ESSA). The previous version of the law was the No Child Left Behind Act (NCLB). This new version of the law was needed because the requirements of NCLB "unworkable for schools and educators." The ESSA is better focused on the goal of preparing ALL students for their futures - whether that be college or career readiness.

Ricki Sabia is the National Down Syndrome Congress (NDSC) Senior Education Policy Advisor and a leading expert on ESSA. (I attended one of her workshops at the NDSC convention in IN and wished that she could have attended just one of Kayla's IEP meetings!)

Heather Sacchs is the National Down Syndrome Society (NDSS) VP of Advocacy and Public Policy.

In a joint education venture the NDSS and NDSC are hosting a webinar on the ESSA and advocacy for education reform as it pertains to students with disabilities. The webinar will also explain why ESSA is important for IDEA implementation and how advocates can join together to ensure the disability community is heard as they advocate to keep standards and accountability high for all students.

The webinar takes place on Tuesday, Oct 25 from 1-2pm Eastern Time and is sure to be packed full of important and useful information.

You can register for the webinar here.

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Monday, October 17, 2016

In Beth's Words

I met Cindy through her blog Adventures With Beth. Beth is her adult daughter who has Down syndrome. I enjoy reading about Beth's life ... I remember when we (several bloggers) celebrated Beth's job and a new relationship (as well as you can celebrate over the internet!).

Since Cindy was much father ahead on the parenting journey with Beth than I am with Kayla I liked getting a glimpse into their lives.

I asked Cindy if Beth would like to guest post on my blog for 31 for 21 and give her perspective as an adult with Down syndrome - what life is like for her. I'm happy to report that Beth was willing to share about herself on my blog! Here are Beth's words about her life:


My name is Beth. I met my boyfriend Nick, at bowling alley and kissed (giggle!) and hugs. He’s a great guy I met. We talk about marriage and our futures. Where we live. He came to 4th of July parade. He sat next to me. He hang out in my room. We watch movies like Full House and Joseph. (Joseph and the Amazing Technicolor Dreamcoat.) He came to my birthday with his parents.

I like to sing and do art at karaoke with my friends. I sing like Cheetah Girls and Christmas songs, Cats. Oh yea and Les Mis and Phantom.

I work at Little Caesars. I help them fold their boxes. First I set my alarm my phone for the time when I finish. I sign in. I go to fold boxes.

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Sunday, October 16, 2016

Be a Global Champion for Down Syndrome Research

The Global Down Syndrome Foundation is asking for people to sign their petition of support for more funding for Down syndrome research.

Down syndrome is one of the most common genetic conditions, yet consistently remains one of the least funded for research.

With that in mind, Global and their supporters, allies, and friends are at "the forefront of a movement to significantly improve the lives of people with Down syndrome through research, medical care, education, and advocacy.

They will be meeting with The White House, Congress, and the National Institute of Health to state their case for more funding and deliver the petition.

It takes less than a minute to add your name to the petition - will you please consider signing it?

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