Veggie Tales Encourages US to #PasstheABLEAct

Crazy huh? I know it does sound a little crazy but don’t be too fast to dismiss this idea. Consider this: the ABLE* Act (H.R. 647, S.313) (Achieving a Better Life Experience) has 370 House Cosponsors and 74 Senate Cosponsors and it still waits to go the floor for a vote.  Doesn’t sound quite so crazy does it?

Veggie Tales Cake by Mommy Mast

Veggie Tales Cake by Mommy Mast

Rachel has always loved Veggie Tales as evidenced in these birthday party pictures. One of her first words was “Bob” as in Bob the Tomato. True story.

Loves her Veggie Tales cake

Loves her Veggie Tales cake

One of Rachel’s favorites was “Queen Esther.” In fact, for years she read the book of Esther every week when we traveled to church. One of my favorite parts of the story is based on the words found in Esther 4:14 “For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father’s family will perish. And who knows but that you have come to your royal position for such a time as this?”  Esther didn’t really want to be the girl who became Queen. The Jewish people and her own family were depending on it though. She wrestled with this but in the video her cousin Mordacai tells her that she was created for such a time as this. I say Congress was created for such a time as this. 

Hmm Veggie Tales sandals. Who knew?

Hmm Veggie Tales sandals. Who knew?

Last week the ABLE Act  went to the Senate Finance Sub-Committee. This was a giant step in a journey that began in 2006.  ABLE’s next stop is House Ways and Means Committee for markup tomorrow. When I saw the announcement, I cried. Many people have worked tirelessly to try to get it passed. Every time we don’t get it passed, we start over in the next Congress. Right now it seems like we are headed to the finish line. It is time. This bill needs to quit sitting on Capitol Hill!  It is a common sense bill that simply stated allows individuals with disabilities and their families to save for the future without fearing the loss of benefits. It is a bill about dignity and respect. As I told Congressman Kevin Yoder (R-KS) the first time I met him, “You should cosponsor because it is the right thing to do.” Last week found Self-Advocate and NDSS Board Member Sara Wolff giving testimony about why it needs to be passed. There were other powerful testimonies and not just from the Down syndrome community. My new catch phrase to add to the #passtheABLEAct is “the time is now.”

Just too cute!

Just too cute!#passtheABLEact for this one!

So back to Veggie Tales, Queen Esther and the ABLE Act. Congress, you were made for such a time as this. Do the right thing. Get this bill off of Capitol Hill and send the ABLE Act to the President now. It is past time to #PasstheABLEAct.  It’s the right thing to do! You all have been called together for such a time as this.

Early start to advocacy with this flag dress gift from Ben.

Early start to advocacy with this flag dress gift from Ben.

*About the ABLE Act:

The ABLE Act would create tax-free savings accounts for individuals with disabilities to use for qualified expenses such as education, housing, medical, and transportation. The legislation has earned the support of more than half of the United States Congress (370 House co-sponsors and 74 Senate co-sponsors) and more than 100 local, state, and national disability advocacy organizations.

The legislation, first introduced in 2006, would amend Section 529 of the Internal Revenue Service Code to 1986 to create tax-free savings accounts for individuals with disabilities. The bill would supplement, but not supplant, benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources.

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War Buddies – Comforts and Connections

Six years ago about now I curled up in the fetal position on the floor of an office in Memphis, TN. I sobbed. My heart ached. Even now as I write this I tear up thinking about it. It was reminiscent of the moments after I received the prenatal diagnosis that Rachel had Down syndrome. It  was an older office and not even in the high dollar part of town. It was crowded with hand-me down furniture. It was crowded with memories. Even though the Down Syndrome Association of Memphis and the Mid-South had only had this donated space for a few years, it represented the past nine years of our lives. I knew leaving that space as the first paid staff member, the first Executive Director of the organization would be gut wrenching so I planned my departure accordingly. I wanted to be alone with my pain.

This week the Summer Disability Blog Hop lands on Comforts and Connections.  You may be thinking that paragraph is not very comforting, but it represents my comfort and where I feel connected. It represents my war buddies. The term war buddies was coined by my precious friend Leanna. Leanna and Shawn were our very best friends when we lived in Arizona. Neither of us had kids then. We taught youth Sunday school together and had a ton of fun. The occasion of my departure from Memphis wasn’t a bad thing. My husband had landed a great job in the Kansas City area. By all accounts the area had a great quality of life, great schools and opportunities. This has all proven to be true. It has been a good move for our family. It wasn’t about that. Still, in 19 years of marriage and five re-locations, why was this move so hard for me?  My friend Leanna said, “You are leaving your war buddies. You cannot recreate what you have been through with this group of people. No one else will understand in quite the same way.  You have lots of friends. You will make new friends but these are your war buddies.” I realized she was right.

Children give you a different kind of connection to people.  Having a child with a disability births you into another club. I met my friend Becky at Special Kids and Families. I can still remember it. Rachel was about a week and Ben was not yet three weeks old. We were there to start this thing called early intervention. Becky was rocking Ben. I was struck by how pretty she was and she seemed like a nice person. I had been praying for God to send me a new friend – someone who was walking this journey. I didn’t want to be too picky but someone with baby with Down syndrome who was a Jesus follower would be nice. I went home and called to inquire about her. Ruth, the intake coordinator, told me Becky had already inquired about me. We lived within 10 minutes of each other.  A lifelong, eternal friendship was born. We served on the board of Special Kids together, worked to try to make systems change to education, and carpooled Ben and Rachel to all kinds of things. We even wore camouflage and ate wild game to raise money to support our program. We still talk weekly and often several times in a week. We are connected and we bring each other comfort.

ben&rachel01

Shift gears to the Buddy Walk. Our organization was the true description of a mom and pop non-profit. Lots of good people trying to build an organization and the tool used to get there was the Buddy Walk. By serving alongside amazing people and then assuming leadership for the walk and working with more amazing people, we built a sisterhood. I say sisterhood because it was mostly women. We had many great husbands who made it possible too but we were the ones in the trenches. In the beginning there was very little money and no space for our organization. By the time we found our donated space we were operating the organization and the Buddy Walk out of two houses across the county from each other. We sorted over 3,000 shirts in a home. We did have a small storage room in the back office of a check cashing business.  It wasn’t big enough for the stockpile of goods we had so my garage became Buddy Walk central. We would meet in parking lots to trade-off the goods that had been collected and needed swapped for an event. We worked hard, cried some and laughed a lot. We built something together and when you work together for something you believe in you build a connection.

rach on daddy shoulder bwmem dancing with mom

Then, we had enough money to do better programs and have nice materials and even have a strategic plan. Someone had donated office space and that started out simply as a spot to operate our Buddy Walk. Eventually, we hired some staff. It could truly be called the incredible journey. It was truly a labor of love. Building the Buddy Walk together created connections but we also had an organization to build to try to meet the needs of families in a three state area. Like most groups we were doing this simultaneously.

It was hard and everything wasn’t always smooth but we manged to build something good and strong for families. We managed to build a well-respected organization. Along this journey, I had the honor of being a part of people’s lives at the best and worst of times. In one year, we lost four babies to heart problems. Nothing in life prepared me for standing with those families but I did it because that’s what I was called to do. Nothing prepared me for Lori Siegal or speaking at her funeral when she died of a heart problem at the age of 25.

lori siegal bw 2005What an honor to be the first person to get to say congratulations to the family of a newborn newly diagnosed with Down syndrome who is afraid because they don’t know what the future holds. What an honor to have the opportunity to give someone factual, up-to-date, unbiased information as they wait for the results of their amnio. What an honor to speak on behalf of people with Down syndrome to doctors, nurses and future teachers. So, so many connections were made. And in working side by side for something so much bigger than any of us individually, we felt comfort or at least I did.

I wrote a blog awhile back that says what I would say 14 years later. One of the things I would say to anyone is to find a support system with real live people.  Facebook and social media outlets are nice but try to find some real people who have walked or are walking in your shoes.  We are all different and not everyone wants to build a walk or an organization. In building a walk and an organization, I found comforts and connections. There is nothing that feels quite like it. We are all creatures created differently with different needs, wants and motivators.

While I have found many new friends who I love and I love to be able to see precious faces on Facebook, connect with families and meet them at conventions,  I do still miss my war buddies. I think of them often and fondly. And you know who you are.

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One Important Tip for School Success – Mentors

Today is high school registration. I believe Rachel has a normal range of emotions about high school. She is excited but she has acknowledged she has some anxiousness about certain things. I think that is typical. I am excited for her and have my own anxiousness. More about some of that later.

I was up at school last week because Rachel’s case manager changed over the summer. This situation was caused when the assigned case manager took a different job. As I was thinking about the new person and bringing them up to speed on Rachel, I realized I have not shared much about the vital role I believe a good mentor has played in Rachel’s school success. I am not referring to typical mentors either. Yes, it is important to have students as mentors. Rachel will have a lovely young lady as her assigned mentor at high school. She has some great mentors like Oksana, but I’m talking about a different kind of mentor. I’m talking about an adult, a teacher.

We believe that one of the reasons Rachel was able to be successful in middle school was because of her relationship with her 6th and 7th grade resource teacher and case manager Ms. Cox. We didn’t plan for that. It just happened. Rachel really needs someone she can go to and talk through things with. She needs an adult who understands her or who can clarify situations to help her process. She needs someone to love on her, support and comfort her, but she also needs someone who doesn’t overreact. She needs someone who can be firm and say time to dry your tears and get back to where you are supposed to be.

Ms. Cox & Rachel

Ms. Cox & Rachel

Rachel needs someone she can talk to about “girl things” and “teen girl things.” She needs someone she feels like she can talk to and count on. Even though Ms. Cox was not her 8th grade case manager, she was still Rachel’s go to person. Rachel knew she could go to Ms. Cox. I was up at school last week and this “mentor” thing is one of the topics we covered. I realized we had not really addressed and hit me this summer that this is a discussion we need to have. We need to try to identify someone who can be this person for Rachel. We think we have identified that person and the school representative I was talking with was in complete agreement that this was important and had already been thinking about it.

While it is important for Rachel socially, this also impacts her ability to do well in her classes. If she has the right person to give her support, she is better able to focus on her classes. Rachel tells us her brain is full. When it gets really full and the movie of her life gets intense (remember she sees her life as one ongoing Disney movie), she needs someone to help her process so she can re-engage. Ms. Cox was her usual go to person. She knew she could count on her even in tough times. To be successful in high school, she will need a new mentor.

Ms. Cox & Rachel at Guys & Dolls

Ms. Cox & Rachel at Guys & Dolls

Once Rachel had done something she shouldn’t have done. She was trying to impress a boy. It was crazy but she realized she had messed up. She was terrible upset and went to Ms. Cox. Ms. Cox calmed her and figured out who was involved in the situation.  She took Rachel and went and found the person who clarified what had happened. She realized Rachel needed to apologize and told her to do so. Rachel did and the student said it was okay.  Ms. Cox told the student “No, it was not okay. That was inappropriate and you need to accept her apology but tell her that this was not okay.”  Then, Ms. Cox got Rachel back to her own class.  And that was exactly as it should have been handled.

As I think about it, she had a mentor in elementary too: Ms. Stefanie her para. Ms. Stefanie had many of those same characteristics that Ms. Cox had. One of the main ones is that Rachel trusts Ms. Cox and she trusted Ms. Stefanie. Rachel knew that she could go to Ms. Cox and she knew that she could go to Ms. Stefanie.

Ms. Stefanie *& Rachel at Mayor's Awards program

Ms. Stefanie *& Rachel at Mayor’s Awards program

What I’m trying to communicate today is to think about this as you plan. We didn’t necessarily plan this and I didn’t even think about the importance of it until we were already fully engaged in the transition to high school. I am convinced that it has made a huge difference for Rachel and for us though. It has given Rachel a way to sort out her full brain and re-focus. You might just pay attention to who is around that can play that role in your child’s life to give them more support for success. Like friendships, I think the best mentors are the ones who have just happened as a result of natural relationships. However, I think you can have your eyes wide open and see if there is someone who seems to be filling or able to fill that role for your child.

I am certain that Rachel’s adventures in high school will give me many more stories to share. Now, I am off to enroll Rachel in high school!

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A Bright Side to Baseball

Along this journey, we have had some incredible experiences. We have met many remarkable people. One remarkable family is the Smith family. Sean Smith, dad, is a Special Education Professor at the University of Kansas. His expertise is technology, and he is considered the guru of technology by our families in the Down syndrome community.

s smith family. jpg

Sean and I met when I attended a session he did here in KC and learned our kids with Down syndrome were about the same age. We have some of the same kind of thinking when it comes to inclusion. He also became friends with my husband Jonathan as they are both quite interested in technology and how it creates new possibilities for individuals with Down syndrome. Nolan loves baseball. Today, I wanted to share this blog about an experience Nolan recently had or maybe the experience the coach, the spectators or the other players had. When you have the opportunity to be a decent human being, sometimes you need to take it. And you might just see the bright side of things too. Thanks to Pine Tar Press and thanks to Sean Smith for sharing  the journey with our family and many more. Enjoy!

nolan & the girls

The Bright Side of Little League Coaching

There’s a growing stigma attached to youth baseball. Overbearing parents who think their kid is the next Clayton Kershaw, fights with umpires, the theory of travel ball leading to no time off and, down the line, injury risk. There are multiple stories each year about some parent who gets out of hand watching kids play a game.

I help coach a 14U team – the Owls. They’re a group of kids in a tough, competitive league with some state tournament contenders. Most of our kids are 13 playing against kids a year older and who use our weekly games as tuneups. Our kids try hard and have improved with every game. They don’t give up. They keep a good attitude. Frankly, we haven’t won a game yet, and it’s tough to keep at it under those conditions. But they do it. I’ve coached a number of these kids for two or three years or more by now and have seen their development along the way. They want to improve and have done that. I’m proud of them.

But I’m not just proud of them for their improvements.

Here’s a little story:

The last week of June, I woke up to an email saying that on Wednesday, we’d have a double-header to make up a postponed game, so we’d play at 6 that night and then again at 8. An hour later, we learned that the team we’d been scheduled to make up the game against wouldn’t have enough players available to finish the season so we would win by forfeit, but the game wouldn’t happen.

In light of that, an opportunity came up to schedule a game with another team (the Bulls) since we paid league fees with expectation of a certain number of games. The Bulls have been in the same league as us with most of the same players over the years. They’re at about the same skill level as we are and we’ve played them fairly even every time.

So we played them that Tuesday, but it was on short notice so some kids weren’t in town or available, so we only had seven kids. Our league doesn’t allow an official game to count with fewer than eight kids (it wasn’t going to be part of the schedule anyway, but we still wanted eight at least).

But we were already at the field and in uniform, so the Bulls’ coach let us use some of his kids in the outfield all game with the idea of switching them out as their kids went to bat. That alone was a nice gesture, but our kids weren’t so sure.

“What if they have a fly ball and just let it drop?” one asked.

We know the Bulls well enough to know they weren’t going to do that and reassured our players.

So at one point, one of these Bulls players in our outfield was cheering on a two strike count and yelled “Hey, strike him out …” and turned to our center fielder, apparently asking the pitcher’s name, then went back to “Hey, strike him out Reed!” One pop up settled into a Bulls-filling-in-as-an-Owl’s glove. Another fill-in held a runner looking to round third. They played like they should have – to play well and right.

We scored some, they scored some. Where it gets murky on the score is because of a kid named Nolan.

Nolan has Down’s Syndrome. He’s helped the Bulls as a bat boy for about three seasons now. Shows up to every practice, every game. Cheers on the Bulls. Before the game, their coach asked if we’d mind if he put Nolan in the outfield when they were on defense with another player to help him. No problem. Nothing went his way but he was out there warming up before every inning.

Then we learned he wanted to hit. So he goes up there and our pitcher lofts a couple in but Nolan swings and misses three times. Our catcher let the ball drop off his glove though, and Nolan ran to first. The next Bull hit a grounder to third and our third baseman looked at second but threw to get the batter out at first, so Nolan’s now on second.

Then a wild pitch, Nolan goes to third.

And a kid gets a hit, so Nolan scores.

Everyone in the crowd is applauding. He’s high-fiving his teammates. We’re cheering for him from our dugout.

Every now and then, you see a story about a kid in some town who was the team manager and get into a game. Think of Jason McElwain getting into his team’s basketball game and scoring twenty points after being their team manager all season. Or Eddie Gordon, who had a similar experience last month. Or Teddy Kremer, Cincinnati Reds batboy, getting his own baseball card. They’re always touching stories, but it’s easy to detach from them (or maybe that’s cynical me saying that). Great stories, but you never know how meaningful it really is for the kid at the time.

When the time limit was coming up, the Bulls asked if we’d send someone up to face Nolan on the mound. The game could have been called, but the umpires let us go on.

We got our leadoff hitter ready and told him what was happening. He asked “but what if I accidentally hit it?” I didn’t really have an answer for that, but just suggested he make it a battle up there.

Nolan set up in front of the mound, peering in, and threw home. Ball one, high and wide. Next pitch, just about down the middle, called for a first strike. Next our hitter squares to bunt but pushes at it and misses. Nolan winds up for the 1-2 pitch and throws to the backstop. Next pitch goes high and wide again. The next one misses as well, but we weren’t sending our hitter to first. He swung and missed at a high pitch, and I’ll give him credit – he put a good swing on a 3-2 pitch, even if he was meaning to miss it. Nolan high-fives his catcher and we go to line up.

Nolan’s run was the difference in the score. That one run. This game wasn’t going to count in the standings so I guess we’ll count it as a 4-3 loss. Best loss we’ve ever had.

At the end of the game, we do the handshake line, the “good game, good game, good game” thing. Nolan leads their line towards ours for that and he’s BEAMING and bouncing around.

During the game we’d signed a ball and sent it to the Bulls dugout for them to sign as well. We even got the umps to sign it. So after the handshakes, our head coach’s wife (who handles a lot of the communications, logistics, and keeps score) hands Nolan the ball, letting him know that we wanted him to have it, and that it was signed by everyone at the game. I was walking back to help pack up the gear, but heard him ask her “can I tell them thank you?”

She brought him by our dugout and announced that Nolan would like to thank us. At that point I was thinking he’d give one all-inclusive “THAAAAAANK YOUUUU!” or something but he didn’t. Instead, he went up to each kid individually, shook their hand, and told them Thank You.

Looked each kid right in the eye and expressed his gratitude. Our guys told him it was fun, that he played great.

To pull a line from every Aaron Sorkin script, it was really quite something.

When Nolan turned to go back to his team, one of our kids said to another “we just made that kid’s summer; that was pretty cool.”

As our head coach and I were heading to our cars carrying the gear, we passed the Bulls’ post-game huddle and heard their coach ask “Nolan, did you have fun out there?” And he answered “you bet I did!”

It’s really easy to be snarky and say that kids need to learn to lose just as much as they need to learn to succeed. I’m sure someone might say this is the “everyone gets a trophy” culture, or will make some crack about stopping for orange slices.

Look. We want to win. Losing sucks. SUCKS.

But there probably aren’t a lot of future big leaguers in this league. If there’s one, it’d be remarkable. So while we’re here, we can teach these kids to try hard, to trust their skills and preparation, and to respect their teammates and the other team.

In a year, or two years, or five, our kids might not remember the night the Owls beat whatever team we can defeat. But I’m sure they’ll remember this night.

I know Nolan will.

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@Rachelspinkhous Comes to Twitter!

Rachel’s first venture into social media is her twitter account  Please welcome her by following her @Rachelspinkhous. Perfect name don’t you think? We’d been discussing her staring to tweet when we got some good news yesterday about the ABLE Act. I was at my desk when this hit Facebook and I shrieked! Rachel came and said “what happened?” I showed her. She clapped. Her daddy and I decided that this was the time to introduce the wonderful world of Rachel via Twitter. Her first tweet says:

@rachelspinkhous First Tweet!

@rachelspinkhous First Tweet!

This is why!

The ABLE Act IS ADVANCING in the US Congress! #passtheABLEact

The Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647) is advancing before the 113th Congress – NDSS is excited to announce that the US Subcommittee on Taxation and IRS Oversight, of the Senate Committee on Finance, will convene a hearing on the ABLE next week!

The hearing will be held July 23rd at 10 am EST on Capitol Hill. NDSS Board Member and Self-Advocate Sara Wolff, whose change.org petition has over 250,000 signatures, is set to testify along with Congresswoman Cathy McMorris Rodgers (R-WA), Robert D’Amelio, Volunteer Advocate, Autism Speaks, Charlotte, North Carolina, and Chase Alston Phillips, Financial Advisor, Alexandria, VA. #passtheABLEact

For more information and to see how you can attend in person or to watch, click here: THE ABLE ACT IS ADVANCING in the US Congress

Below are Rachel’s friends and ours, Senator Moran (K-R), Congressman Yoder  (K-R) and Senator Roberts (K-R). We are proud they are all ABLE Act co-sponsors.

moran-rachel best yoder rach up close suds.13  roberts reading rachel's letter3

We think @Rachelspinkhous will provide great entertainment and education as it showcases the abilities of one young woman who just happens to have Down syndrome!

Now let’s get this done. #passtheABLEAct NOW!

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Dance Honors Rachel, Benefits Great Cause

Hey Friends,

This is from our friend Lisa Redlich’s daughter Marina! We have been friends with Lisa for almost 25 years and Rachel and Marina are the same age. They met when they were small and see each other on Facebook. Hope you will consider participating – especially if you are in the Central AR area. And the shirts are way cool!  Check it out.

marina dance a thon

From Marina:

I am so excited to tell you about an event I am participating in this summer! On Friday night, July 25th, I will be ringing in National Dance Day with a six-hour Dance-a-Thon! I need your help – will you sponsor me by making a contribution? Please help me reach my goal of $500.00 by clicking on the link below. Be sure to click on the “add special instructions to the seller” button and enter my name and “Dance-A-Thon” so I will get credit for the contribution!
dance a thon marina
All funds raised at the Dance-A-Thon will be contributed to kef theatrical productions Story Shifters program. Story Shifters is a theatre arts residency specifically designed for students with medical, physical, and neurological impairments, including students on the autism spectrum and students with special needs. The goal of the program is to build literacy, fluency, and comprehension through drama and social interaction.

The Dance-A-Thon is hosted in honor of 15-year-old Rachel Mast. Rachel is from Olathe, Kansas. She will be a freshman at Olathe South High School in the fall. She is on the Principal’s All A’s Honor Roll and was recognized in 2013 by the City of Olathe with the Youth Community Access Award. Rachel loves to sing, dance and act – she’s been in 15 musical productions. She is one of three students with Down syndrome featured in a video “Just Like You – Down Syndrome.”

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kef theatrical productions, Inc. is a 501(c)(3) organization and a not for profit corporation. All contributions are tax-deductible and a tax receipt will be provided. Thanks for your support!

Sincerely,
Marina

marina dance

Wow!  We are blessed by so many people.  Rachel says, “This is amazing and I love the pink shirts!”

NOTE: T-Shirts are $15.

 

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Rachel Pledges to Change Perceptions

As my daughter would say, my brain is full today.  What a week!  We met up with old friends, eternal friends. We attended the National Down Syndrome Congress conference. It is a giant family reunion. I met many folks I know via my blog and Facebook, connected with old friends and acquaintances, learned a lot, laughed a lot and saw Rachel attend her first Youth Adult Conference and make new friends.  Then, there was yesterday.

Last week just before we left for NDSC, Ronnie Metsker of the Johnson County Republican Party contacted me. Through our advocacy work we have become acquainted with his lovely family.  He told me about an event Kansas Governor Brownback (R) was hosting. He would be bringing in former presidential candidate Senator Rick Santorum. They would be hosting a press conference at an Olathe business, Cars4Less. They needed someone to do the Pledge of Allegiance and wouldn’t it be awesome if Rachel could do that. I agreed that it would be awesome. Anytime our self-advocates can have an opportunity to show their abilities, it is awesome. So we adjusted our plans and made it back in time for Rachel to be a part of the event.

Rachel with Ronnie Metsker

Rachel with Ronnie Metsker

We trotted over to Cars4Less.  We met a lot of people. We met one of our school board members. We saw and heard Senator Pat Roberts (R-KS) co-sponsor of the ABLE Act and some of his entourage. We talked to Olathe Mayor Mike Copeland and Kansas Lt. Governor Colyer (R). President Dwight Eisenhower’s granddaughter Mary Jean was there. We were able to meet many other people who are movers and shakers in our community and many ordinary folks like ourselves. I heard many times that Rachel has a million dollar smile. “She could help with our campaign.”

Lt. Gov. Colyer, Sen. Santorum, Gov. Brownback & Rachel.

Lt. Gov. Colyer, Sen. Santorum, Gov. Brownback & Rachel.

The room was packed and so was the schedule. It started with a prayer from a local pastor and then came Rachel. She confidently marched up and did the pledge with her beautiful smile and stopped to shake hands with Governor Brownback on her return to her seat.

Prepping mic.

Prepping mic.

Leading pledge

Leading pledge

Shaking Gov. Brownback's hand. Pictured with Mrs. Brownback anad Sen. Santorum.

Shaking Gov. Brownback’s hand. Pictured with Mrs. Brownback anad Sen. Santorum.

She sat attentively and listened to the speeches. She was especially excited  when Governor Brownback mentioned what a great job she did with the Pledge of Allegiance. He went on to mention that he worked across party lines with Senator Ted Kennedy (D-MA) to pass legislation that impacted people with Down syndrome. He said, “Look at this beautiful young lady.Everybody is beautiful and dignified and a beautiful child of a loving God.” Rachel beamed. She clapped at appropriate times and stood up at appropriate times. She looked at the protesters. I leaned over and whispered that they disagreed with the Governor and Senators and they were exercising their rights because in the United States we have freedom of speech. She said, “I know. I learned about that in school.”  She enjoyed every minute of the day.

rachel looks intent

Some people are probably thinking it is the Pledge of Allegiance, is that really such a big deal and my politics don’t align with these folks? Several folks told Rachel that they could not have gotten up and done what she did. We would have been afraid. The organizers told me they were concerned she would be overwhelmed by cameras and security and people.  They just didn’t know Rachel. She became friends with Holly Starr and I think she may now have a new career path.

Cars4Less Spokesperson Holly Starr & Rachel.

Cars4Less Spokesperson Holly Starr & Rachel.

Having learned about advocacy as a 4-H member in rural White County, Arkansas I continuously tell people to put politics aside when it comes to advocating for the policies we need. Just like we expect our political leaders to work across party lines, so must we. Otherwise, we would not have IDEA or ADA or the ABLE Act (#passtheABLEAct) which is going to get passed this year! If I want the ABLE Act passed, if I want stronger seclusion and restraint law enacted, if I want more money for special education – whatever I want, I have to help educate our leaders on what we need and why we need it.

So maybe it wasn’t a big deal. Yesterday someone’s perception of people with Down syndrome was re-shaped by a girl named Rachel. Maybe the next time we are advocating for policies, we will have a few new ears. Rachel – leading the pledge and changes perceptions.

 

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Red, White and #passtheABLEact!

Have you noticed, it’s been awhile since I’ve said anything about the ABLE Act.   Independence Day reminded me that I need to remind all of you and more importantly, Congress that is time to get this bill passed.

Congressman Yoder, (R-KS) an original ABLE Act 2013 cosponsor, invited us to be part of his parade supporters in the Lenexa Independence Day Parade. We got to meet his beautiful daughter and re-connect with some folks we have met in the various Congressional offices.

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We marched and carried signs. Rachel made a new friend who walked with her and they tossed candy to the crowd. Before the parade began, we had the opportunity to say hello to Senator Roberts (R-KS), also an ABLE Act cosponsor, and get a photo.

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I had met Kansas Governor Brownback (R-KS) when he was a U.S. Senator. As a very conservative U.S. Senator, he set aside politics and joined Senator Ted Kennedy (D-MA) in introducing the Prenatally and Postnatally Diagnosed Conditions Awareness Act. The bill was signed into law in 2008 and amends the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. Proof that Congress can do the right thing. Gov. Brownback had not met Rachel. I introduced them and we got our photo-op. I reminded him that I had met him when he was a Senator and thanked him again for championing this act. He chatted with me for just  a couple of minutes about the act and how proud he was to have been able to get this piece of legislation signed into law. Our time was up. As a U.S. Senator he was a cosponsor of the ABLE Act for that Congress.

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We didn’t see Senator Moran (R-KS) on the 4th. He was at a different parade.  He is also an original cosponsor of the ABLE Act of 2013. Are you noticing a theme here?  We have 75 of 100 Senators as co-sponsors on this bill. We have 365 United States Representatives on this bill. Today’s blog is also a history lesson. There are 435 representatives so we have overwhelming support for this bill that simply allows families of individuals with disabilities to save like all other Americans. We are continuously bombarded with ads telling us to save for college, retirement, long-term care and aging parents. Yet, we the people who are parenting those with disabilities are told not to save because we may jeopardize our needed government supports. Let’s not empower people with disabilities by allowing them to do what they can. Really, it makes no sense to anyone.

I think marching in an Independence Day parade is about as patriotic as it gets. The honor of celebrating our country’s birthday in a parade and to show support for a candidate is not something we take for granted. We explained to Rachel that in many parts of the world, people couldn’t do what we were doing. They might go to prison for speaking freely. As a female, she would have even less rights. I’m not sure that she totally understands that. So in a country where we can speak freely, worship freely, carry guns if we so choose, vote and campaign for our chosen candidates, a person with Down syndrome cannot save freely? I am quite sure that I do not understand that.

There is something terribly wrong with this picture. Do not let another year go by. Do not make us re-introduce this bill in the next congress. Next year, let me be singing let freedom ring as Rachel starts saving for that pink house. Give hundreds of thousands of people with disabilities another of the rights that other American’s have. Congressional leadership, send the ABLE ACT of 2013 to the floor today for a vote. Set politics and conservative and liberal labels aside. Do the right thing and #PasstheABLEAct now.

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Rachel’s new friend is headed to New York to attend NYU. Coincidence or fate?008

 

 

 

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4th of July Breakfast Pies

This is a fun, easy little breakfast recipe for your family or guests. It looks festive with the red and blue berries! I call it Breakfast Berry Pies. You could also make these for dessert and serve with ice cream or whipping cream.breakfast berry pies 3

Breakfast Berry Pies

1 package of crescent rolls (8 rolls)
1/3 cup raspberries
1/3 cup blackberries
1/3 cup blueberries
2 tablespoons lemon juice
2 tablespoons sugar
Ground Cinnamon
2 tablespoons melted butter
Extra sugar for sprinkling.

Preheat oven to 350°. Mix berries, granulated sugar, and lemon juice together in a bowl. Stir until well mixed. Set aside.

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Lay out the dough and separate the pre-cut triangles. Stretch them out a bit to create a bigger surface area for you to lay the berries on.

Sprinkle the dough with ground cinnamon.

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Place a couple of tablespoons of the berry mixture onto each triangle. I try to be sure I have variety on each roll.

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Roll up by folding 2 opposite triangle corners into the center, then roll toward the last corner. Press the dough closed to contain the berries. Sometimes they turn into a square!

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I baked mine for 12 minutes and then brushed with butter and sprinkled with sugar and cooked two more minutes.  My oven does cook hot though.

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Rachel ate hers with whipping cream. Jonathan likes his plain.  I think they would be good with apple pie spice too.

This recipe is a version of one that I found at The Pescetarian and the Pig!  Don’t you love that name? She used strawberries in her recipe.  Really you could use almost any type of berry.

Happy July 4th!

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Inclusion Done Right: Church Camp

Last week our church youth participated in Centrifuge (Fuge) Camp on the campus of Southwest Baptist University in Bolivar, MO. Fuge Camps have been around for about 30 years and are operated under the umbrella of Lifeway Student Ministries. In short Lifeway is the name of the Southern Baptist Convention’s ministries. This particular camp focuses on Bible Study and personal growth for middle and high school students. This is Rachel’s third year to participate in this camp with her friends. Rachel goes to church, Sunday school and to social activities with the students from our church. They know Rachel. They include Rachel.They look out for Rachel. I see no reason why Rachel wouldn’t go to camp with her friends. Fuge brings together students from multiple churches in multiple states.The camp staff is composed of college students and young adults. It is a an awesome week.

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My husband and I volunteer in the youth ministry of our church, Blue Valley Baptist.  Each year we both go to camp as adult sponsors. It is a week we look forward to as much as the students. During the course of last week, I had a few observations I would like to share. First is mealtime. Rachel is almost always the last one to get through the line and to the table. Even though the table was crowded, the girls always made room for her and helped her if she needed hep with her tray. They did this for other kids and not just Rachel. Rachel is perfectly capable of managing the lunch line, drinks, etc. She has learned this at school but this is a different environment. A little help from her friends goes a long way.

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At Fuge the students are divided in to Bible study and recreation groups. They are with their general age group and mixed with students they know and don’t know. They also choose two different tract times that focus on interest area activities. No surprise that Rachel chose drama and interpretive sign. Oh how I wish we had a creative movement/interpretive sign group at our church or nearby in which Rachel could participate! Since camp it on a college campus, the groups disperse to various buildings and venues. I don’t worry though because I know that our students and the staff will help Rachel find her way.

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Rachel’s Bible study and recreation leader was a young woman named Lauren. I always try to chat with people who will be teaching or leading Rachel – even at church camp and community activities. My conversation is basically that she can do the same things as the other students so treat her the same as others. It may take her a little longer to process what you say to her and if you have concerns please let me know. I didn’t have the chance to catch her leader prior to the first Bible study. Between worship and Bible study on our first full day I talked with her. This is what she said. “The kids from your church seem to be tuned in to Rachel. They seemed to know if she needed help and when she didn’t. She’s great and they’re great!” I agree. She then wanted to know if we had any limitations for recreation. I told her we wanted Rachel to participate just like the other students. A few years ago I found her sitting during recreation. When she saw me headed her way, she headed back to the group. I inquired and the leader simply didn’t know. He thought she might have a heart condition. No, she has a “I don’t like to sweat condition,” I responded.

The final night at camp we have something called Mega Relays. Mega is crazy night of outdoor messy relay games. It rocks. We love it. They do this thing called amoeba where all the team (25 plus students) run across the field together. Rachel’s little legs have a hard time keeping up and she fell down in this event. The kids helped her up and she went on though. Then, I saw Gabby. Gabby is one of our seniors. She came over and helped Rachel through the remainder of the games. Rachel needed a little help. Gabby saw this and without anyone telling her, she stepped up and made it so Rachel could participate in a more meaningful way. I will miss Gabby next year but I trust that God has someone else who will step up and be there if Rachel needs them. I also envision Gabby’s future of making a difference in this world. She has a quiet, behind the scenes, servant heart and wants to be a nurse.

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While my immediate point is that this is inclusion done right and done well, there is a bigger point. I hope those who encountered Rachel at camp will see those who are differently-abled as more capable and as friends. Maybe they will be the ones who call and invite her to do something. I believe that inclusion in the church and community are equally if not more important than the school. School has an end point but the church and community are where we will live and thrive. Connections there will also equate to jobs, friendships, housing and quality of life. Our children’s minister in Memphis always said it is not about Rachel. It is about what God wants to teach all or us and each of us. She is right.

So yes, I do think church camp inclusion is important and not just for Rachel.

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