Seven Days of Rachel’s Wild Life & Mom Too!

I’ll write more in-depth next week but on this Friday, I wanted to share some images from our past seven days and an unexpected piece of encouragement that an exhausted momma received when she returned home.

April 15, 2015 KS Gov Brownback signs the KS ABLE Savings Plan into law.

April 15, 2015 KS Gov Brownback signs the KS ABLE Savings Plan into law.

Congressman Yoder's FB post

Congressman Yoder’s FB post

Wind blown presentation of NDSS Champion Award to our Congressman Kevin Yoder on the Capitol steps. Rachel says he is the BEST ON! She also asked him for a job. I love it!

Wind blown presentation of NDSS Champion Award to our Congressman Kevin Yoder on the Capitol steps. Rachel says he is the BEST ON! She also asked him for a job. I love it!

Rep. Meadows (R- NC) stopped us to compliment Rachel on her smile and share a moment with us.

Rep. Meadows (R-NC) stopped us to compliment Rachel on her smile and share a moment with us.

Rep. Lynn Jenkins (R-KS) always gracious to take time to say hello.

Rep. Lynn Jenkins (R-KS) always gracious to take time to say hello.

Beauty Queens in the Halls of Congress. Rachel was all over that!

Beauty Queens in the Halls of Congress. Rachel was all over that!

Rep. Sessions (R-TX) following remarks at NDSS Congressional Champions Breakfast

Rep. Sessions (R-TX) following remarks at NDSS Congressional Champions Breakfast

Olathe South Graduate & NDSS President Sara Weir with Olathe South freshman and STUCO member

Olathe South Graduate & NDSS President Sara Weir with Olathe South freshman & STUCO member at NDSS Awards Banquet

Girls finally meet. Moms are fabulous friends. Now girls can be too.

Girls finally meet. Moms are fabulous friends. Now girls can be too.

Honored to present Ms. Sherri Harnish with NDSS Ambassador of the Year Award. She and her daughter Macy are "awesome!"

Honored to present Ms. Sherri Harnisch with NDSS Ambassador of the Year Award. She and her daughter Macy are “awesome!”

Dear Friend Joe

Dear Friend Joe

Mom's are friends and now these two cuties are too!

Mom’s are friends and now these two cuties are too!

Rachel received an award at the Olathe South Academic Awards program. We were at BWW :(

Rachel received an award at the Olathe South Academic Awards program. We missed the ceremony because we were at Buddy Walk on Washington

Graduation Party for the Queen

Had to hit a graduation party for The Queen

Rachel's 3rd Grade Teacher got married

Rachel’s 3rd Grade Teacher got married!

I spoke at our church’s ladies conference a week ago today, and I returned home to this beautiful card:

pic on note fr retreat 2015 note from retreat 2015

It was really beautiful, touching and humbling. I didn’t post both sides of the note. I almost always end my speeches with the story of George and Rachel: The Power of Inclusion. On the back side this lovely lady who sent the card went on to say, “When I saw this picture on this card, I just knew I had to send it because it reminded of the tear producing you told about the special friendship between George and Rachel.”  She said more but that reached out and grabbed my heart and tear ducts.

I wonder if George or Rachel knew the impact they would have?  Like I say in my speeches, God knew. “For I know the plans I have for you,” declares the Lord. “They are plans to prosper you and not to harm you; to give you a hope and a future.” Jeremiah 29:11.

And this was just the last seven days!

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Why Advocate? We All Have a Story

Later today, Rachel and I are headed to Washington DC, arguably my favorite place.  We are headed to the National Down Syndrome Society’s Buddy Walk on Washington. We are honored to be a part of all aspects of the program from training others to participating in training and awards ceremonies. We are most excited to get to visit Rachel’s “friends” Congressman Yoder (R-KS), Senator Jerry Moran (R-KS) and Senator Pat Roberts (R-KS). She sees them as her friends and I think they see her as a friend. I know the office staffs see her that way. And that is how it should be.

yoder cac2013

Friday night I had the great and humbling honor of sharing at our church ladies’ conference, Stories: Living, Loving, Sharing. I have many stories. My friends all say you can’t make up the things that happen to you, Jawanda.  So when I was invited to share at the ladies conference with the topic of “This is My Story,” I was a bit bewildered. God delivered me at last-minute, which is not my style, but as always He was faithful.

bvbc ladies me

As I thought about sharing my story I thought of two very distinct stories from my life. The first took me back to Mt. Hebron Baptist Church in Joy, Arkansas. Joy is the tiny little White County community where I grew up.  I heard my grandmother, Mr. Dalton, Ms. Maudie and Mr. Ernest singing “this is my story this is my song” and other great gospel hymns from the time I was a little girl until they time they all went to be with the Lord. I suspect they were singing together Friday night.  Growing up in Joy, Arkansas in the 60’s and 70’s was about as different as growing up or living in Johnson County, Kansas in 2015 as you can imagine. Our community was an average farming community. There were not “rich” people. People worked hard. I was a writer with a vivid imagination from a young age and I wanted to go places and see the world. Through the vehicle of the 4-H Youth Development program, I got my ticket to go on trips and to learn how to do most of what I have done as an adult. I learned how to speak, run a meeting (task master than I am), raise money, asked anyone for anything, work hard and work together. I also went on my first trip to Washington DC and fell in love with the whole advocacy thing. We even called the Hogs on the U.S. Capitol steps. WPS!

4-H Citizenship Washington Focus 1978. I can't find my picture of us on the Capitol steps!

4-H Citizenship Washington Focus 1978. I can’t find my picture of us on the Capitol steps!

As I said Friday night, I heard the words of Isaiah 6:8 in my teen years, “Here am I. Send me.” We all have a calling or several and we will all have a story. No story is insignificant.  I have also always wrestled with God because of my big mouth. Oh yes for the obvious reasons but also because there are a lot of days I don’t want to be the voice. But I heard my call early.  “Jawanda, you will be the voice of those who won’t, don’t or can’t.”  I didn’t know then what that would look like in my life. And I’ve spoken for many who won’t, don’t or can’t but when Rachel came along my calling took me a new direction.

Fast forward to the past eight years. It has been our story and the stories of many others around this country that have been told in efforts to pass the ABLE Act.  It has been the leadership of people like the late Steve Beck and Sara Weir, NDSS President,  who answered the call to lead the charge. It has been people like Brad, Sherri, Kelly, Joe, Amy, Debbie, Sara, Rachel and many, many more who answered the call to make this world a better place for people with Down syndrome. It has been through these combined efforts, this great advocacy  that this great piece of legislation was passed.

So today we go back to Washington DC to teach, to learn, to celebrate and to advocate some more.  Last year when the ABLE Act was signed into law, I told my contacts in our legislative offices that they just thought they would be getting rid of me because I would have something new to talk with them about. Actually, it’s not new. I’m staying the course because I want Rachel and others with Down syndrome to have access to the same opportunities as everyone else. I want Rachel to get to live her dreams. Rachel Mast says her life is amazing. She still wants to live in that Pink House.  Jobs, post-secondary education, keeping students safe, research funding and strengthening elementary and secondary education around the country are just a few things we have to keep working on. So here we go again.

And this is why I advocate!

Why I Advocate

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Proms and the R-Word

The title is deceiving today. This and that would be a better title but I thought this might attract more readers! In addition to getting the Kansas ABLE Act passed this last week, Rachel went to the Down Syndrome Guild of Greater Kansas City prom. Rachel went with her friend Ryan who also accompanied her to her high school Winter Dance a few months ago.

rachel & ryan dsg prom 2015 best

They are cute together. There was a sweet group that made the journey to the event together. Here is one of my favorite pictures of the girls.

prom girls wrist corsages

And out of 700 people, Fox interviewed Miss Rachel about her first prom. No doubt she’ll have more proms but clearly she enjoyed this one. DSG Prom on Fox. If you didn’t know before, now you do. Rachel is a “happily ever after” kind of gal! Must have been picked up by some national media because a friend from Arizona let me know that she saw it on the news there!

A few weeks ago, I posted about Rachel’s High School’s participation in the school district wide Spread the Word to End the Word activities. This week the district features the events of the week on the home page of the district’s website. Great article about great activities about some super awesome folks.

“What I love most is that (this campaign) is a combined effort using students with diagnosed disabilities as well as those considered typical to plan a program to make people aware and get them to make a pledge to be part of the change,” Olathe South parent Jawanda Mast said.

elminiating the word usd 233 pic

I love that we learn so much from our students. Across our district, they are the ones who made this work. Read more here – Eliminating the R-Word.

I often say that nothing is perfect. As we all navigate this journey called of life and those of us with loved ones with Down syndrome and other disabilities navigate the world of disability alphabet soup, these are some of the good things. Today, I smile.

 

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Rachel’s Pink House in a Year?

Apparently, Rachel is moving into her pink house sooner than later. She was irritated with me last week.  Yes, this would be my sweet child with Down syndrome who is always happy. During one of her self-talk bathroom sessions I overheard her say, “It won’t matter Rachel. You are moving OUT OF THIS HOUSE in a year!” Laughter overtook me as a I fell down the stairs to share with Jonathan that we would be empty nesters sooner than we expected!

Last week, was a wild week.  I headed to Topeka a couple of times to work on the Kansas ABLE Act. After getting our federal ABLE legislation signed into law in December, we then started the process of state companion legislation. Kansas State Treasurer Ron Estes and his office did an amazing job of readying Kansas’ companion legislation for Representative Erin Davis (R-Olathe) to introduce back in January. You may have read about it. Our Congressman, Rachel’s friend Kevin Yoder (R-KS) testified and then introduced Rachel. She won the hearts of the committee and it passed out of committee unanimously. You may have heard, we have budget issues in Kansas and in many states. Our budget issues combined with some politics almost stopped the Kansas ABLE Savings Plan in its tracks.

jawanda erin after able vote

However, we didn’t give up. Rep. Davis persevered. She reached out to State Senator Greg Smith (R-Overland Park) and he attached our bill to one of his. Unanimously passed the Kansas Senate, 40-0. Then, just when we thought we were ready for the house vote – we hit another snag. So advocates rallied. Action alerts went out. The KS Disability Rights Center, Autism Speaks, Developmental Disability Council, National Down Syndrome Society, other local support organizations, legislators and ordinary people like me went back to work. We tried to dispel myths and provide accurate information. SONY DSC

So Wednesday, April 1 2015 the Kansas House of Representatives overwhelming said yes to individuals with disabilities by passing the KS ABLE Savings Plan 116 yeas to 4 nays. On my way to Topeka that morning, I was especially emotional. It is difficult to put into words the emotion I felt as we took one of the final steps toward making ABLE real for Rachel and so many other Kansans.

ks able roll call ks able 116 yay 4 nay

Such a string of people to thank for this victory. Rep. Erin Davis sponsored the bill and introduced a bill (HB 2170) requiring stronger seclusion and restraint rules and regulations in the Kansas public schools (that bill is still in conference.) I met Rep. Erin Davis when I was at an event with Congressman Yoder last year. She immediately wanted to help us in our endeavors. I told someone from NDSS that Erin Davis is our friend. What I mean is that Erin Davis has a heart for individuals with disabilities and their family. Through this session I have seen someone who will work with us and help us. She understands we need a voice, her voice. She is a friend to those with Down syndrome and other disabilities. I am thankful.

Thanks to Sen. Greg Smith for keeping the bill alive. Thanks to the Kansas State Treasurer’s office for everything they have done and will continue to do to implement the KS ABLE Savings Plan. Thanks to all those partner organizations for pounding the halls of the state capitol to help get this bill passed. Thanks to the advocates who made their voices heard last week when we needed them most. They responded to the call of action.

I have to say thanks to the KS Congressional delegation, Senators Moran and Roberts, Representatives Yoder, Jenkins and Pompeo for co-sponsoring and supporting the federal ABLE Act.  Some of their tweets about their home state of Kansas, a place they all love and are proud to call home:

yoder tweet ks able 4_1_15 moran tweet ks able act 4-1-15

A shout out to Steve Back. May you rest in peace and thank you for leading the charge to make this possible.

Finally and most importantly, thank you Rachel. Thank you for wanting to live in a pink house. Thank you for being my best teacher ever. I have often said this is a labor of love and conviction for Rachel and for others. For me, it starts with my passion for a more inclusive world for Rachel. One where she can have dignity, she can be respected, she can be independent and make her way.  One where she can live in a pink house – just not sure it will be in a year though!

Now my signature line reads:

#PassEDtheKSABLEact

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And Baby Sally Cried

Today was a big, big day at the Mast household. Baby Sally’s bed went to a garage sale for Inclusion Connections. A new little girl will be getting this super deluxe baby bed, bath, swing high chair combo that still plays music.

sallys bed swing crib

Now if you are friends with us or have been following TheSassySouthernGal for very long, you know all about Baby Sally and Marisol. If not, here’s a quick review. Rachel received Baby Sally as a Christmas gift her 2nd Christmas. She was 18 months old. Baby Sally quickly became her constant companion. She has been to doctor’s appointments, church, airplanes, Disney, New York City, been x-rayed at Children’s Mercy Hospital

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and her crevices cleaned by the dental assistant at Dr. Mehdi’s office. After all these years of love, she has an eye that barely works. She is stained. She is lumpy and has loose joints. If there is a baby or a baby doll loved more than this one, I sure do want to meet her! The super deluxe bed, bath, swing combo was delivered by Santa for Rachel’s 3rd Christmas.

Marisol, American Girl’s Girl of the Year, came along when Rachel was 6. She sat on a shelf for two years playing the role of Cinderella because Rachel would tell you that she cooked and cleaned while we were away. Side note: I never saw any evidence of this. However in the past few years, Sally stays home most of the time and Marisol goes out more. She has had several ear surgeries and has a sleepover almost every night. I think that subconsciously, Rachel knows that Sally is medically fragile. In other words, she may disintegrate!

sally & marisol buckled

Back in the summer some friends were coming over. Rachel told me she needed to put the bed in the closet. I wanted to know why and she said she didn’t want her friends to see the bed. We have discussed that she probably shouldn’t talk about the dolls at school. Some people might make fun. I assured her that these friends wouldn’t mind if the bed was in her room. This did allow for us to talk about age appropriate toys and we were able to move the bed to the basement. It has been there several months.

Sally and Marisol are truly Rachel’s confidants.  And she is a great mom to them. We learn a lot through Sally and Marisol. Inclusion Connections is having a garage sale fundraiser so I saw my chance.  I mentioned to Rachel it might be nice to donate the bed because some little girl doesn’t have a bed for her babies and you could help raise money for Inclusion Connections, too.  This was not met with great enthusiasm but she didn’t say no. She said she would need to talk to Marisol and Sally. OK.

Several days passed and I thought that we would probably have the bed forever. Last night though, Rachel brought Sally and Marisol to us. She was a bit teary and she said, “I talked to Sally about her bed. And Baby Sally cried. She doesn’t want to give away her bed.” Then she said, “But Marisol is older and she told Baby Sally that some little girl needs a bed and it would be nice to give the bed away. She told her that she would take care of her. So you can take the bed.”

sally bed 2

I took the bed to the home of the garage sale this morning. Guess what?  Baby Sally isn’t the only one who cried.

 

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Run Daddy Run

People want to know why Jonathan runs in what many of us consider “crazy” long runs. He started with the St. Jude Marathon and has now moved up to Ultra Marathons. Today he is running his 10th Ultra Marathon. A few years ago he wrote this article for the Down Syndrome Guild of Greater Kansas City’s Dad’s Corner of their Connections newsletter. In honor of today’s 10th race, I thought I’d share it again.

Why I Run by Jonathan Mast

I am a runner. I run a lot. Sometimes, up to 50 miles in one day! A lot of people ask me what I am running from and why I chose to go to such extremes. I am not running from anything. I am running to something. How did I get started and why? I started out like anyone else. I ran a mile one day and then progressed to marathons and then on to what is called an ultra marathon. I have many reasons for running, but my one driving inspiration and my end goal for climbing out of bed when it is dark, cold and snowing is my daughter Rachel.

Rachel is my amazing daughter who is almost 11. This year she received an award for reading 6,000 minutes at school, and I was there by her side for most of those minutes. She has been in countless plays, choir concerts, and soccer games and appeared on TV shows just to name a few of her accomplishments. If she had a Facebook page, she would have a huge following. Though of less importance Rachel has Down syndrome. So some people find this list of achievements quite unbelievable. I live with her so it is just everyday occurrence for her to raise the bar beyond what the world expects her to be able to accomplish because of this label.

Since she was born, I have watched as she pushed past one goal after another. She has left behind a trail of skeptics who wanted to set the standards so low that if equated to my running program would mean that I would just stay in bed every morning and not lace up my shoes.

My most recent race was a distance of 40 miles through miserable muddy conditions around Lake Clinton, KS. My legs hurt toward the end. I was facing the usual mental opposition of why should a 46 year old man be out here doing this seemingly crazy hobby? As always my mind drifted to Rachel and the visual image of her waiting to run those last 100 yards with me. My ultimate prize was that sparkling smile, beautiful, contagious smile that would join me as I crossed the finish line. She will be saying did you win daddy? I will answer no but I finished. She will say that’s great daddy – you did your best. She’s heard us tell her a million times – just do your best.

I think of how she may not think of what she does every day as hard work. Then again she may based on recent homework conversations. Some days are hard when she suffers the occasional cruel comment from another child or gets frustrated by a math problem and tells us “my brain forgot”. Then almost as fast as Usain Bolt in the 100 meters, she rebounds and is making us laugh with her jokes and her crystal clear laughter.

Life is hard for all of us sometimes. Running helps me deal with what life throws at me. So in answer to your question, I am not running away from anything but rather I run toward the hope and joy that my daughter Rachel brings to me. I run because I want her to know that all things are possible. I want to be in good health so I can hopefully enjoy the many more amazing journeys she is going to take her mother and I on in life. God gave me a ticket to an amazing story.

run collage 2013

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One of the Good Guys – #BobbyBandwagon

For some reason the media loves to share all the “bad boy” sports stories. It must sell or I guess they wouldn’t put it out there. Funny that pretty much everyone I know wants to see more of the good guys. I believe there are more positives than negatives and today I want to share a personal one.

A while back my husband Jonathan was in the local Olathe Quik Trip and saw a gentleman with a Hog on his cap. Growing up die-hard Hog fans, wherever we go we find other Hogs. Quite naturally, Jonathan said “Go Hogs” and engaged in conversation. The gentleman told him that his son was on the UA baseball team. Upon learning that I can only imagine the twinkle in Jonathan’s eyes. As a boy from Arkansas who loves his Hogs and baseball, he must have been in heaven. Jonathan, social media guru that he is, looked up the son.

The son is Bobby Wernes. Jonathan started following him on twitter. Bobby followed back and responded. Soon they started texting. Jonathan wanted Rachel to meet Bobby, so on one of Bobby’s trips home they met up for ice cream. Jonathan came home and shared with me how impressed he was with this young man. Not his baseball ability either. He was talking about his manners and how he engaged Rachel. Later in the year I too had the opportunity to meet him and his significant other. I was equally impressed.

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Last weekend we were able to go down to Arkansas for a couple of games. Rachel was able to sit in the family section at the games. We were able to connect with Bobby’s significant other and she introduced Rachel to the RBI girls.

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These are the cheerleaders dressed in baseball attire (sort of) who dance on the dugouts. Rachel has never seen a cheerleader she didn’t love. She was on cloud nine. She met the baseball mascot Ribby.

spring break 15 098

Previously, she has met the other live and inflatable mascots Big Red, Sue E., Pork Chop and Boss Hogs. More heaven for Rachel. We also had the opportunity to meet Bobby’s family and some of the other players families.

Bobby’s twitter profile says “God gives his toughest battles to his strongest soldiers.” We liked that and we loved how he and his team mate Tyler Spoon draw a cross in the on deck circle before batting.

The Hogs played perennial powerhouse and number two ranked LSU. After winning the first game of the series, the Hogs lost game two and were beaten pretty badly. There is an area where fans and family gather after the games to speak to the players and to get autographs. Bobby came over and immediately found Rachel. Told her he was sorry for the loss but happy to see her. Engaged in conversation.  Signed her poster that she had made. Major smile. Then, Bobby talked to bright-eyed little boys and signed baseballs. It was late. They had lost. He, and all the other players, were not just polite – they were engaging.

The next afternoon the Hogs lost again. Bobby had played well both games. This was a close game though and sometimes those are harder to stomach. Bobby came over and immediately found his parents. He gave them both a hug. You could see that this loss was harder. Still, he found Rachel and chatted with her and then he went about the business of chatting with the other fans.

spring break 15 082 - Copy

Bobby’s Coach Dave Van Horn, has coached a ton of good baseball players. Friday he was quoted as saying that “Bobby Wernes is the best defensive players I have ever coached.” Wow! The scouts are talking about where he will land in the draft. Earlier in the week he had a play that was Sports Center’s number 1 in their “Top Ten Plays of the Day.” He dazzled us with some of his plays while we were there, too.

So here we are, the Hog Crazy Mast family.

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Parents are alums of the University of AR. We are hoping that Rachel will be a Hog too. Time will tell on that one.  Bobby Wernes is a college kid who is a great baseball player. Apart from us being Hog Crazed alums, he didn’t know us. He didn’t know Rachel.  But best I can tell Bobby Wernes represents one of the good guys. He is what’s right with sports.

All the Masts are now on the #BobbyBandwagon. Hope you will be too. Here’s to the good guys.

spring break 15 093

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Celebrating the Rachel’s #WDSD15

This Saturday, March 21 the world will celebrate Rachel and all the other earthlings who have an extra 21st chromosome. World Down Syndrome Day (WDSD) is a day recognized by the UN, countries and organizations around the world where we celebrate the lives of individuals with Down syndrome. It is March 21 every year. March, the third month, symbolizes the three copies of the 21st chromosome and the 21st day represents that 21st chromosome. This is scientifically what causes Down syndrome. A person or their parents do nothing to cause them to have Down syndrome. The creation of the triple copy of the 21st chromosome happens at conception. Individuals with Down syndrome are not defective, afflicted or suffering. They are people just like you and me and created perfectly the way they are supposed to be. It’s who they are!

rachel a vanessa farm

For #WDSD15 organizations have come together to do some different activities to shine a bright light on the abilities and worth of those with Down syndrome. I mentioned some of these in my blog about Random Acts of Kinds for WDSD15 last week.  Each year, I try to give friends, readers and others some ideas for ways to bring awareness to the abilities of those with Down syndrome. There are many ways you can support Rachel and others with Down syndrome.

If you are interested in donating money as a support mechanism, you have choices. Today, I’m promoting two. The past few years on March 21st I’ve told you about Down syndrome research. This year is no exception. You can click here and learn about the cutting edge research through the LuMind Foundation. Want to stretch your money? The deserving LuMind Foundation has a match going on through Saturday. Any donation you give will be matched 3:1. So if you give $21, it becomes $63.  If you give $100, it becomes $300. You get the idea. LuMind is world-class research and always needs more money. Improved cognition and links between Alzheimer’s and Down syndrome are just two of the exciting areas they are impacting.

Another option for those who want to support Rachel and others with Down syndrome financially is to support Rachel’s NDSS Your Way “I Love My Life” campaign. We are a part of the National Down Syndrome Society’s (NDSS) ambassador program. Most of our advocacy efforts are in conjunction with NDSS. Advocacy is so important. Think about the difference the ABLE Act will make for Rachel.  NDSS was one of the lead organizations on the ABLE Act and instrumental in its passage. So we would love for you to support their mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

If you are not able or interested in financial support but want to do something, these are just a couple of other ideas:

  • Take the pledge to end the use of the R-word
  • Share the Just Like You – Down Syndrome video or another awareness education video on social media or email it to friends and educators! Of course, this is my favorite video!
  • Participate in a Random Act of Kindness
  • Commit to volunteering for a Down syndrome support organization or another organization supporting those with intellectual disabilities.
  • Become friends with someone with Down syndrome. If you are a teenager or college student, invite them to a movie or lunch or to do something fun.

The sky is the limit in ways you can help us spread positive public awareness about Down syndrome. Be imaginative. Be creative. Be respectful. Be involved.

I posed this Facebook question, “What is one thing you want people to know about Down syndrome?” Rachel’s response, “We are amazing and I love my life!”

shelby farms swinging

Celebrate Rachel! Celebrate life! Celebrate Down syndrome!

Happy World Down Syndrome Day 2015!

 

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Sharing Down Syndrome with Books and …

October is National Down Syndrome Awareness month. During that month we do a lot of promotional activities and fundraisers. Many Buddy Walks and Step-up Walks are held around the country and globe to raise money, but just as importantly and maybe more so to raise awareness of the abilities of those with Down syndrome.  A few years ago March 21 was designated as World Down Syndrome Day (WDSD). Makes sense and it would really make more sense for Down Syndrome Awareness Month to be in March, too. Why? Well, WDSD is 3-21 every year because Down syndrome is caused by the addition of that third copy of the 21st chromosome. Most of us only get two chromosomes but our friends with Down syndrome get a third 21st chromosome. That’s as far as my science lesson is up for this am.

In recent years, people and groups around the world have launched awareness activities for World Down Syndrome Day. Some are a little controversial but all are well-intentioned. Whether it’s rock my socks by wearing mismatched socks or programs in schools or a fundraiser, we are promoting awareness of the abilities of people with Down syndrome. This year I am excited that most of our national organizations (National Down Syndrome Society, LuMind FoundationInternational Down Syndrome Coalition- IDSC, National Down Syndrome Congress, Down Syndrome Affiliates in Action and International Mosaic Down Syndrome Association) have joined forces and the Empire State Building will be shining blue and yellow in honor of ‪#‎WDSD2015‬!

wdsd empire state building wdsd15

These same groups have united for an additional awareness and celebration event to promote Random Acts of Kindness for #WDSD2015. It’s easy to do. You just choose something to help spread love and kindness in honor of everyone with Down syndrome. Rachel and I decided we wanted to donate a book to her former elementary school. Since our school is on spring break the week before #WDSD2015 and Rachel is having ear surgery next week, we decided to go this week and do our Random Act of Kindness!

We’ve donated books to the school, Down syndrome organizations, the public library, the district special education library, hospitals, other healthcare providers and the high school. Some are to educate children while others are more technical and are geared toward professionals. We’ve also donated copies of Just Like You – Down Syndrome. In fact, Rachel and Savanna will be speaking at a local middle school later this afternoon. They are doing an abbreviated version of their Social Inclusion presentation and then showing JLY for a school wellness program. More Down syndrome awareness we say. Back to the books though. When Rachel and Savanna did this original presentation in Maryland back in October, we met some great people. One person we met was Christina Grimes. She shared with us a book that she authored about her daughter. We read it and loved the beautiful pictures.

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The book, “Together We Can Do Anything” tells the story of Christina’s daughter who was born with Down syndrome.

grimes book 1

The real pictures are a definite benefit for this book. Often people are looking for pictures of real people. This is true when someone gets a diagnosis and when children are learning.

grimes 4 grimes 2

And I hate to say it, but sometimes the internet does not pull up the most flattering pictures. These pictures show kids doing life and loving life. The explanations are simple but complete. Something I really liked, especially for those with siblings, is the section at the back that features testimonials from siblings of individuals with Down syndrome.  I think it is another good book to add to any library! Rachel was very excited to be able to present a copy to Mrs. Veatch who was her elementary principal.

wdsd book veatch 2

The hard copy book is available from Amazon and if you click on the book title above it will take you there. Thanks Christina and Madison for sharing this book with us.

Whether you have a child with Down syndrome, love someone with Down syndrome or want to learn more about Down syndrome, you too can be a part. Check out any of the links to the national organizations above to learn how you can be a part. Maybe you just want to donate to one of these organizations or you’d like to find a local group. They can direct you. It’s just a great opportunity for us to celebrate the lives of all the Rachel’s out there!

Happy World Down Syndrome Day 2015!

*Savanna is Rachel’s friend who is also featured in the Just Like You – Down Syndrome video. Sometimes both girls are invited to give presentations.

 

 

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“I am Me,” R-Word, High Schoolers Impress

A year ago last week I noticed all of the posts from schools about their campaigns to End the Use of the R-word. The campaign has taken off these past few years. It’s easy. It’s needed. Education is a game changer. So I inquired of a friend and she said that it was a district-wide deal so I contacted our District Special Education Director. Shouldn’t we be doing something? She said that she would reach out and see if our district might participate.  I don’t know if that was the catalyst or if my timing was just good, but the result is impressive.

Back in October Rachel was invited to a lunch meeting. The meeting was a gathering of students from the district’s four high schools. It was an inclusive group and the students brainstormed about what they could do with this campaign and ultimately support those with intellectual and physical disabilities. Each school did their own thing and I don’t know what went on at the other schools, but our kids knocked it out of the ball park! Last Wednesday, March 4 was the annual “Spread the Word to End the Word” Awareness Day. The teacher who coordinated at Rachel’s school sent me an email the week before and told me she wanted me to know what the students had decided to do. When I say students, I mean students with and without disabilities. They did a week-long campaign. They made signs and put up around the school. They made a big banner and during lunch staffed a table and had anyone and everyone sign it. If you signed you got a bracelet. I got one when I went up to take picture of Rachel at the booth.

os pledge megles reese mast

Student Council Vice President, President and Rachel!

os pledge group

Rachel and friends taking signatures.

They also made a video and posted on YouTube. The students idea. They did their version of one of the national campaign videos. Many made their own signs. Rachel is the last student and her sign says “I am Enthusiastic.”  The video is “I am Me.”

For us this journey is definitely a marathon and not a sprint.  So many lessons to be learned from the events described in this blog. One is to never give up. Keep giving ideas to people. Like the book “A Fish Out of Water” says, “something might happen you never know what!” Along this marathon there are days when our muscles hurt and we are discouraged. One of my friends said last week that she was discouraged. She told her husband she needed someone to impress her. Then she said, “This impressed me.” Me too.

If you still aren’t sure why the R-word thing is such a big deal, read this blog, “Let’s Talk About It: Retard.” I think it does a great job of putting it all into perspective. And then for those of you who know Rachel, whenever you want to use that word put her name in the place of it.  It’s never too late to take the pledge!  Have you?

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