PLAY Campaign at Fenway Park

One of the reasons we went to Boston was for Kayla to participate in the 3rd Annual PLAY Campaign (Promoting a Lifetime of Activity for Youth). This campaign is from the Professional Baseball Athletic Trainers Society (PBATS), the Taylor Hooton Foundation, Henry Schein Cares, and the National Down Syndrome Society.

This program takes place at several Major League Baseball parks across the nation and brings together kids of all abilities for an inclusive, on-field, educational and athletic clinic with the PBATS.

When I first heard about the program a couple years ago and realized the Red Sox were one of the participating teams, I was so tempted to jump on a plane and take Kayla! However, she was at camp so the dates just didn't work out. This year when I saw the email about the upcoming campaign I wasn't really expecting that we would go, but just for fun I checked the schedule to see when they would be at Fenway ... and it was July 15, Kayla's birthday. The Red Sox were also in town and would be playing a game that night. Everything was telling me to GO! Don't miss this opportunity!

It's no secret that I'm a huge Red Sox fan (and of course raising my kids as such!) and I've wanted to take them to a game (we did see the Sox play the Braves in Atlanta a few years ago, and we also went to a Greenville Drive game - minor league team of the Sox here in Greenville, SC). But, FENWAY! This would be not only going to a game at Fenway, but getting to experience Fenway up close and personal.

A road trip would also give us a chance to stop in CT and visit with my dad's side of the family (which, again, timing was perfect for this as the day we stopped by was the day after the 7th anniversary of my dad passing away. It was so good to be with his family).

So! PLAY Campaign! It was such a neat experience and I'm so glad we made this opportunity happen for both Kayla and Lucas (siblings were able to join in on some of the activities) ... and I lived vicariously through them :)

We made it! Fenway Park!

Another bonus was getting to hang out with a friend I met via blogging years ago; she signed her daughter up to participate too!

She's on the field at Fenway! And there's the Green Monster!

Doing some warm-ups

 

 Only my girl ... cartwheels at Fenway!

Lucas catching a few fly balls

Taking some batting practice

Warming up in the bullpen 

I might have been a liiiittttle bit excited to be on the field at, did I mention, Fenway Park!

With pitcher Brian Johnson who was there with pitcher Marcus Walden for Q&A session

What a fun experience for everyone, and a fun way for Kayla to spend her birthday!

Her Face = Priceless

Last Friday, yes on Lucas' birthday, Kayla had a regional archery tournament in Columbia, SC.

Kayla's highest score was the 151 she got in Worlds last summer in Orlando. So far this season she hasn't been close to that score. Her best has been a 103.

I don't know what it was for this tournament, but she was on fire! She shot her best score yet - blowing away her 151. She came away from Regionals with a 165! She did so great with her shots; it was exciting to watch her.

After one particular round she was especially pleased with herself. She was excited to end that round with a 9 (she might have thought it was a 10; sometimes it's hard to tell until they go to the target to score their round) but we're all really excited for her when she gets that arrow in yellow!

Anyway, she was pumped coming back from the line and threw in a fist pump to herself. I'm so glad I caught this picture of her. Pure joy. Pure excitement. Elation. Self-confidence. Pride.

That's her coach behind her - just as happy for her as she was ... her excitement can get contagious!

Look at her face!

This was her "yes!" before the above picture, but of course someone waked right in front of me as I was taking the picture!

 Her coach is the best! He's so great with all the kids. 

Honor Roll!

Kayla made the Honor Roll!

Academics do not come easily for her, at all, so this was definitely hard-earned. I was not able to be at the ceremony but I heard she was just beaming and so proud when her name was called.

Requirement is 86 and above and she had a couple 85/84 last year so she was soooo close! So proud of her during this first quarter marking period!

If I Could Go Back

Remember the online documentary about 5 roommates (4 with Down syndrome and 1 with Williams syndrome) in England called The Specials? 

Their website was recently relaunched where Seasons 1 and 2 are available to watch and they have a trailer to their new film they are releasing called "If I Could Go Back..."

It's a film geared towards new parents and made in corroboration with parents who have children with Down syndrome from around the globe, to include UK, USA, France, Nepal, Australia, Sweden, Spain. The parents are reflecting on their experiences and passing on some insight to new parents. If I could go back, what would I tell myself? I wrote myself a letter about that!

You can check out their Facebook page and YouTube channel, too.

Medical Research in Down Syndrome

Down syndrome continues to be the most common genetic disorder and the least funded. There is so much to learn about the connections to the 21st chromosome and research is so important.

It's important not just to the individuals with Down syndrome and their families - but it is important in the general population as well. There is a huge connection with Down syndrome and Alzheimer and potential cures for Alzheimer can help the general population. There is also interest in researching in why people with Down syndrome are less likely to get certain cancers - like breast cancer - or more likely to be diagnosed with leukemia, but have a higher rate of survival.

Frank Stephens, a self-advocate, testified on Capital Hill regarding the importance of funding for Down syndrome research. It's important for his voice to be heard.

As he states, people with Down syndrome are "...a medical gift to society, a blueprint for research into Alzheimer, cancer, and immune system disorders."


You can also watch the testimony of Michelle Sie Whitten, Co-Founder, President, and CEO of the Global Down Syndrome Foundation.

What can you do as families? Have you registered with DS-Connect: The Down Syndrome Registry? You can connect with researchers and health providers and possibly participate in certain clinical studies.

Guardianship Thoughts

Last week I watched a webinar about the Beyond Academicss Program at the University of NC Greensboro.

Last year I blogged about how impressed I was with their program after talking to them at the NDSC Convention and this webinar just reinforced to me how much I would love for Kayla to attend their program, or one very similar to it.

Just a few examples of the success their graduates have had compared to people with intellectual/developmental disabilities across the nation:

61.5% were employed compared to just 35% across the nation
54% lived independently/semi-independently compared with 36%
77% had checking account and wrote their own checks compared with 29%
92% completed volunteer/community service in last year compared with 19%
100% registered to vote compared to 62%

There was a lot of great information shared on the webinar but something stuck out to me that I didn't realize, or hadn't thought of before.

To be eligible for the program students have to be their own guardian - the parent(s) can not have guardianship.

I'm not sure if all programs have that requirement - and it's not mentioned on any of the ones I looked at on Think College, but I imagine the same would be true for any of them.

It does make sense that if you're sending your child away to a 4-yr residential program like this that you would not have guardianship of your child, but it was not something I had given a thought about.

We still have a few years left before we decide if we're going to pursue guardianship of Kayla or not. I know I don't want to have to do that, but it's something we really need to research and figure out what we're going to do.  If having guardianship impacts her ability to attend a program like this we definitely need to take that into consideration.

There are some options to not pursing full guardianship though. ABLE South Carolina has an informative video about Supported Decision Making: A Family's Perspective.

This is something we will be exploring as a possibility for Kayla.

Intelligent Lives - A Documentary

Intelligent Lives is a new documentary film by the award-winning producer/director Dan Habib set to be released in 2018. The film follows the lives of 3 individuals with disabilities whose lives would have much different outcomes if they had been born even as recently as 1970 - most likely by being institutionalized.

"Academy-Award winning actor Chris Cooper, the narrator of Intelligent Lives, unpacks the United States’ sordid history of intelligence testing, which led to people with intellectual disabilities carrying a clinical label of “moron,” “idiot,” or “feeble minded.”  The three central characters of Intelligent Lives — Micah Fialka-Feldman, Naomie Monplaisir, and Naieer Shaheed — would have been labeled this way had they been born in the first half of the 20th century. Their parents would have been counseled to send their children to live in an institution alongside hundreds or thousands of other people with disabilities. They might have been among the approximately 65,000 Americans forcibly sterilized in order to “improve the stock” of humanity during the U.S. eugenics movement. As recently as 1975, Micah, Naieer, and Naomie would not have had legal access to a public education."

See a preview of the film here and see a list of screenings here.

You can also follow along for updates on the FB page.

That Taboo Topic

Two years ago, during 31 for 21, I blogged about the importance of sex education for people with disabilities - and it's still important for this topic to be discussed.

As I said in that post - sex education isn't just about sex (safe sex/abstinence) but it's also about healthy relationships and what is/isn't appropriate. It's about learning about boundaries and personal space and owning your body and knowing you can say no.

With the current news focused on the latest man in position of power sexually harassing/assaulting women, it's important that people with disabilities are involved in this conversation.

It's so important because 80% of women with an intellectual disability will be sexually abused. (The article I linked to for this statistic in my previous post is no longer available).

Aside from that glaring statistic - people with disabilities have sexual feelings too and have been treated as children well into their adult lives and not been given the chance to explore their sexuality.

This article explains Why Sex Education for Disabled People is so Important. And it isn't just coming from the 'experts', but from people with disabilities who were interviewed for this article.

"When it comes to disability and sexuality, a large part of the issue lies in the fact that disabled people are so infrequently included in the decisions made about their bodies, their education, and their care. So what do people with disabilities wish they had learned in sex ed? This is what students and adults with disabilities said about their experience in sexual health courses and what they wish they had learned."

Internships for People with Disabilities

Some welcome news coming out of Albuquerque, NM about Presbyterian Rust Medical Center. The hospital has partnered with Adelante Development Center, Rio Rancho Public Schools, Vocational Rehab, NM Dept of Health, and U of NM Center for Development and Disability to offer internships for people with developmental disabilities who have graduated high school and are between the ages of 18-22.

Interning is a great way to gain job skills, but can be hard to find for people with developmental disabilities. So far this program is producing positive results with many interns from the previous year landing paid jobs.

It's encouraging to read about opportunities like this and hopefully more hospitals will partner with school districts for providing internships.

It's definitely a step in the right direction showing people with disabilities are capable if given an opportunity.

This internship program is part of a wider network of intern opportunities across the country with Project SEARCH. Their high school transition program "...provides real-life work experience to help youth with significant disabilities make successful transitions from school to adult life."

You can see what programs are available in your state (and a few countries as well!)

Camp Rise Above

Kayla and Lucas have been fortunate to attend a local camp that serves kids with different health issues for the past few summers.

Camp Rise Above is a fun 2-day camp experience (with plans to expand to be a weekly over-night camp) that offers rock climbing, archery, fishing, canoeing and a trip to the water park among other activities.

Kayla started attending this camp several years ago going to the session for kids with Heart and Kidney issues. This summer they added a camp that was for kids with Down syndrome. I was a bit conflicted as she had been going to the Heart and Kidney one for a couple years and did fine at that session - I didn't feel she 'needed' a camp specifically for kids with Ds, and I liked the idea of her being in the other session because she was with mostly typically-developing peers. I'm all for inclusive opportunities like that - not just for Kayla, but for the other campers to have the experience of being included with someone who has a different chromosome make-up. But one of Kayla's best friends was going to the Ds camp and I could split car pool time with her mom (which helps because the camp is about 45 min away), so she went to the Down syndrome session this year.

Lucas attends the session for kids with asthma. He was diagnosed a few years ago, but thankfully it seems to be pretty well under control.

Kayla didn't attend the camp last year because the date coincided with a sleep-away camp she attended. This past July we were in Greenville (3 hrs away) walking down Main St when this guy walking towards us stopped to ask me, "Is her name Kaylee?" I said, "It's Kayla." as I'm trying to figure out how he must know her; and then he asked Kayla if she remembered him from camp. He was one of her counselors from a couple of years ago and said she was one of his favorite campers (and asked about her last year when she wasn't there). I think the feeling was mutual as you can see from this photo of a couple of years ago. Small world, indeed!

Lucas had a great time with his counselor, and if I remember right, he's going to Spain ...hopefully he'll be at camp next summer so Lucas can hear all about that.

Our local ABC News 4 channel did several news pieces highlighting the different camps and experiences offered to the campers.

This video has several clips of Kayla - the first time she appears she's coming down the water slide in a blue and yellow swim shirt.


Lucas is in a couple quick scenes in this video - sitting on the picnic table while talking about the cookie challenge.



I'm glad they have this opportunity to attend this camp and they look forward to it every summer.

Buddy Walk, 2017

Another year, another Buddy Walk in the books! Kayla looks forward to this day and has so much fun celebrating herself, and her friends with Down syndrome.

If you're participating in the 31 for 21 blog challenge, please sign up by clicking on this button!
<center> <a href="http://mdbeau.blogspot.com/2017/10/11th-annual-31-for-21.html"><img border="0" src="https://vgy.me/jS96jd.png"/></a></center>

11th Annual 31 for 21

Welcome to the 11th Annual 31 for 21 where we blog every day in the month of October for National Down Syndrome Awareness Month.

 A couple of guidelines:
- You don't have to blog about Down syndrome every day; just blog every day about whatever you want
- You should mention, at least once, that you are participating in "31 for 21"
- Please link back to this blog so all participating bloggers can sign up below in one place
- You don't have to be a parent, or grandparent, of someone with Down syndrome to participate
- Use #31for21 on social media 
- Spread the word
- Have fun!


Please sign the Mr Linky so everyone can follow along to see the other bloggers who are participating:


Here is the button and code to display on your blog so others may find this post and link up!
<center> <a href="http://mdbeau.blogspot.com/2017/10/11th-annual-31-for-21.html"><img border="0" src="https://vgy.me/jS96jd.png"/></a></center>