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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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Saturday, October 15, 2016

Presidential Candidates and the Disability Platform

In Feb of this year RespectAbility released a "Disability Voter Guide" ahead of Super Tuesday with a rundown of where each candidate stood on disability issues.

In creating this guide they sent each of the candidates a survey of 16 questions on disability-related issues so people with disabilities and their families would know how each candidate planned to address important issues affecting people with disabilities.

Clinton and Sanders returned the survey with all questions answered; Carson and Kasich returned it with some of the questions answered; Cruz, Rubio, and Trump hadn't filled it out. (On the link above you can click on each person's profile to see how they answered the questions.)

This month the website Complex Child takes a closer look at the disability policies of all 4, yes 4, presidential candidates.

Usually they would use the candidates' responses on the disability survey as well as the candidates' campaign websites for their source material to allow the "candidates to speak for themselves about the issues." However, since some candidates have failed to complete the survey they relied only on candidate websites for fairness.

The five categories they compared candidate positions for are
- Disability Rights
- Medicaid, Insurance, and the Healthcare System
- Special Education
- Community Living
- Specific Condition Plans (like autism)

Some things that jumped out to me after looking through the responses to the 5 issues:

1. Clinton is the only one who has a section on her website on Disability or Disability Rights.

2. For each of the 5 issues Clinton's information is a paragraph long and very detailed; the other candidates sometimes have no information given or just a few sentences worth.

3. Johnson does not address disability issues on his website

4. Trump only discuses disability as it relates to veterans - difficulty accessing disability payments and services.

5. Most of the 'hits' on Stein's page on disability are from comments and questions about disability that voters have asked and not statements made by Stein.

6. Clinton has several plans relating to Special Education, one of which is to fulfill the promise to fully fund special education services through the Individuals with Disability Education Act. (Federal government was supposed to pay 40% of special education, the most they've paid is 17%).

7. Johnson, Stein, nor Trump specifically mention Special Education; although Trump does criticize Clinton's plan to fully fund IDEA as too expensive.

I know we don't, or shouldn't anyway, vote for a candidate based on just one platform, such as disability, we need to look at the whole picture and their plans for many other important issues as well.

As a parent of a child with a disability, this is obviously an important issue for me. To see the information, or lack of information/plan, each candidate has for various disability issues was eye-opening for me.

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Friday, October 14, 2016

Victory Junction Family Weekend

One of the nice things about living in SC is being close enough to attend Victory Junction!

Kayla has attend camp the past few summers and Lucas attended once for the sibling session. (Unfortunately for Lucas that was the last year they had sibling camps - he really liked it there!) The past couple of years while Kayla has been at camp, Lucas and I have stayed in NC for our own little vacation together exploring museums, the zoo, and geocaching.

They also have Family Weekends in the Spring and Fall for the whole family to attend. We've been fortunate to have attended a few of those as well!

We just went last month, and a bonus was that friends from our area were also selected to attend that same weekend. It was fun for the kids to be able to hang out.

One of the things I like about this camp is their ability to accommodate special diets; ie gluten free since Kayla has Celiac Disease. It's so nice not to have to worry about packing gluten-free food for her since it's all provided.

We had a fun family weekend getaway with activities like bowling, fishing, boating, horseback riding, archery, dance parties, and the ever-popular Stage Night.

I think the highlight of this trip was the archery experience. We all got a bull's eye by popping the balloon ... that was pretty exciting! Speaking of archery - Kayla is on the archery club at school this year; I'm happy for her and can't wait to see how she does.

The theme was An Evening In Paris; wear something black and white with a splash of pink!

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Thursday, October 13, 2016

National Down Syndrome Adoption Network

Last year I blogged about the National Down Syndrome Adoption Network and the crucial role they play in helping connect parents who are placing their children with Down syndrome for adoption to families who are looking to adopt children with Down syndrome.

The NDSAN maintains a registry of families who are home-study ready for adoption in the U.S.

Stephanie Thompson, the director, recently put out a call seeking more families from the state of North Dakota who are home-study ready for domestic adoptions and would like to be on their registry.

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