Rachel’s More Than a Bill on Capitol Hill

Back in 2009, “School House Rock” was Rachel’s first show with Christian Youth Theater (CYT) Kansas City. Here are a couple of pictures. I love her expression in this one.

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And I love that the prop had her name and initial on it in this one.

shr box name showing

It was a great first show for our family. Saturday afternoon Rachel went with our friends the Stricklers to see the 2014 version of CYT’s “School House Rock.” As a little aside, you may remember that Andrea Stickler is Rachel’s peer mentor at her high school. When I was searching for Rachel’s School House Rock photos, I found this one that I didn’t even knew existed.

shr w andrea

That’s Andrea playing the part of George. Perhaps a little foreshadowing? Before Saturday’s outing, Rachel and I were talking about the show and singing a few of the songs. Our favorite is “I’m Just a Bill” which Andrea sang in the 2009 production. We were singing it and I said, “Rachel, what bill is on Capitol Hill that we know about?” She said, “The ABLE Act. Pass the ABLE Act so I can get my pink house.”  I reminded her that it had been on Capitol Hill for about eight years. Just hit me that is several years longer than she has been singing this song!

Rachel started advocacy at a very young age. She was almost three for her first trip to the Tennessee State Capitol for “Disability Day on the Hill.” All or part of our family went every year. She was a tiny little thing and cute as could be. She was a good girl but she was tired by mid-afternoon so her daddy found a seat in the main corridor while I went to finish visits. I came back and found them surrounded by a crowd. Apparently, she had been visiting with legislators, other advocates and lobbyists. Jonathan said, “We should have just sat here all day. We’ve seen everyone. I was able to give out information to several legislators.”

When she was about seven, we were visiting legislators for that same occasion. We walked in an office and she bypassed me and went straight to the legislator. She stuck her hand out and said as clear as could be, “I’m Rachel. I am fully included in my first grade classroom.”  I was so stunned I had to gather myself.  I was recounting the story to a fellow advocate and mentioned that I was surprised by this. Apparently, she really does listen to what I say. My friend said, “Yes, she listens and I am sure she is happy to be in the classroom with her friends.” The friend had a twinkle in her eye that was not lost on me. Rachel understands a lot more than we sometimes realize, too.

The benefits of inclusion and advocacy efforts cannot be overstated. They are often intangible. They are often non-measurable. They are sometimes seen years down the road when the smartest kid in the class is managing his own company and he gives the girl with Down syndrome a job. Or when Rachel connects “I’m just a bill” to the actual ABLE Act that for which she has advocated. Or when the ABLE Act is passed. Or when the talented, beautiful girl from a CYT show wants to be Rachel’s peer mentor. That doesn’t happen if you are always in separate classes, in your own hallway, or in segregated activities. Truly, Rachel is more than a bill on Capitol Hill.

 

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Best Keep People with Down Syndrome at Home

This is a picture of Rachel from 2001.  It was taken at my friend Vanessa’s farm. I love it because it captured then and now her personality.

rachel a vanessa farm

Sometimes when we face ignorance and stupidity, I go to the picture box and reminisce. I find comfort and God’s wisdom there somehow.

Over the past week there was an outcry in the Down syndrome community regarding a letter to the editor in Fredericksburg News Post.  The letter was from Gary Jenkins, brother of Sheriff Chuck Jenkins of Fredericksburg. Brief history: January 12, 2013 Ethan Saylor went to a movie. He had gone to many movies. He didn’t come home. He died at the hands of three off duty law enforcement officers. Ethan Saylor was an adult man with Down syndrome and he died from a crushed larynx, asphyxiation. You didn’t know? He was just an adult man with Down syndrome. He was a loved son, family member and community member. The media didn’t cry out for justice. On Monday the Huffington Post picked up this piece Mardra Sikora, According to Jenkins, Best to Keep a Person with Down Syndrome at Homes.

I’ll let you read the pieces yourself and come to your own conclusions.  I would like to say that I do not believe this mentality is indicative of all people in this community, and I do think that training is a step in the right direction. No more of my commentary on that though.

As I saw this unfold and as I now read this, I can’t help but think “this could be Rachel.” She has Down syndrome. Do you think I should keep her home?  Then, I received this from a good friend of my who teaches in Arkansas.

Just wanted to share with you the impact that Rachel makes, even when she doesn’t realize it. I am currently teaching a Leadership Service Learning class. This week we are examining the Character Trait of Respect. Today I introduced to the students that no matter who you are, respect should be given and how everyone needs to make a difference in whatever way they can. Then we talked about respect through diversity and how we are all alike. Then I showed them the “Just Like You” video which opened great discussion about all that Rachel does to bring respect for others. The kids thought it was awesome and many said they had learned a lot through the video. I will be interested to see how this discussion continues throughout the week.”

I don’t think Rachel should stay home.

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Rachel Runs for Student Council

Rachel is running for Vice President of Student Council at her high school.  The election and results are today. When I contacted the sponsor, I told him if she didn’t win there would be tears. Just like if she isn’t cast in a show, there would be tears. Life lessons and I do not believe because she has Down syndrome she is immune to such life lessons.

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We have made posters. Lots of posters. We gathered friends to make posters.

poster makers. stucco

We have tweeted. Friends have re-tweeted. We have Instagrammed. Friends have liked and pledged support.  We have posted on Facebook and friends have re-posted and campaigned for votes via Facebook. She dictated her speech. We put it on paper in big letters. Her friend and peer mentor Andrea went with her to make the speech video. It will be played today.

This morning I picked up two friends, Savanna and her older sister Sierra. Both have been a big help. They were all meeting a group of girls who would help hand out candy campaign cards that said “Vote for Rachel. She’s bursting with school spirit.” The other one says, “Be a Smartie. Vote for Rachel.” Starburst and Smarties are attached to the cards respectively. I sent a bag of Hershey’s kisses for a little extra help.

hanging stuco posters

This morning I said, “Rachel today no matter what happens I want you to remember our verse.” With the biggest smile, she said “Do not be afraid because God is with me wherever I go.”

I have no idea who will win, but what I wish I had a picture of was of Sierra carrying bags of candy, and Savanna with bags of candy in hand helping Rachel out of the van and helping her with her bags. In her quiet way. Savanna was doing her on campaigning. She wore her Step Up for Down Syndrome shirt with “Rachel’s Razorbacks” on back. And off went “The Girl with the Smile who GOES the extra mile” with her good friend Savanna. That’s what really matters.

 

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Integrity

Friday I had the honor and privilege of driving down to Fayetteville, Arkansas to attend funeral services for a great man, Jamie Jones. Jamie Jones had been the director of the Baptist Student Union (BSU) on the University of Arkansas campus for 37 years. I had a four-hour drive down alone so I had a lot of time to reflect, reminisce and listen to vintage contemporary Christian music like The Imperials, Dallas Holm and Twyla Paris. Missing was Evie who I first heard at the BSU. That would have been appropriate because when I first heard Evie at the BSU I was trying to hide the fact that I was a frightened freshman from Rose Bud, Arkansas.

My reminiscing got a kick-start on Thursday night. As I dropped Rachel at theater classes, my favorite Styx song “Come Sail Away” came on the radio. I cranked it up. Rachel rolled her eyes, sighed and said, “Mommy, mommy, mommy.”  I told her that my friend Sandy used to play that for me at the BSU and on retreats.

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Styx isn’t quite contemporary Christian but I met my friend Sandy at BSU. He was a talented musician and could play most anything by ear. I can barely tell you where middle C is! Still, he was a dear friend and knew I liked it so he would play it for me. He and some friends had a Christian band, Perspective. I spent a lot of time as one of their pseudo groupies.

I thought of retreats and marshmallow fights, getting tickled about house shoes at morning Bible study and themes like “Building Bridges” that were turned into “out of date, out of style, building bridges what a pile.” We Baptists do have a lot of fun you know! I thought of travels to missions conferences, Glorieta and Ridgecrest. summer missions, and the host of spiritual leaders I met through my time at BSU.

I thought about my friends. My eternal friends who I am still close to and our roots trace right through the Baptist Student Union. Most of the girls I call my dearest friends were part of BSU.

all girls campout

Of course, Jamie Jones, the BSU Director during those years, set the tone. I remember a lot about Jamie. I remember that he was concerned about what might be going on as we camped out for basketball tickets. We were among the originals to camp out for student basketball tickets at the University. I thought of his saying that the music of Perspective hurt his ears. I could see his big smile and yes, his bald head anytime you walked in the building and the calming effect he always had. I thought of Mrs. Best and her white go-go boots. I suspect she may have had them on when she greeted him in heaven. I thought of the passing of friends while we were in school and Jamie’s steadfast love and support during those times of grief.

While all of that stands out, for me personally there are two specific times in my life that I think of when I think of Jamie. Jamie was a lifelong friend and not just my BSU director. When my baby brother died in a sudden tragic car accident, there was a call to me at my parent’s house from none other than Jamie Jones with his deep, comforting voice. Then, there was a call from my college pastor. Jamie had let him know. Then, the day of the funeral, there was Jamie. He had made the four-hour trip to be there to support me and my family. He was joined by a host of friends including BSU directors and contacts from across the state.  I shall never forget. Then when we learned that our unborn daughter had Down syndrome, the call came from Jamie. The comfort and love he extended reassured me that it would all be okay. Anytime I would send Jamie a letter, I could expect a call about three days later. He always called to thank me for the letter. He especially liked pictures. I know I am one of thousands of students he impacted and loved long after we were students in the BSU.

Jamie Jones joined his Savior last week. He was 91 years old. It would be hard to think of anyone who impacted more lives than Jamie. Generations are impacted by his devotion and service to our God, his Lord Jesus Christ. By earthly means, Jamie didn’t have much. Jamie described his wife Beverly as my “greatest earthly blessing” and meant it. They lived a simple life. They were married for almost 67 years. Their love and loyalty to one another was evident anytime you were  them or heard either of them speak of the other. They lived in the same home for years and years and always welcomed you in and shared what they had. They have five children and a host of grandchildren and great-grandchildren. Jamie attended the same church for probably 60 years. He sang in the choir. He served as a deacon. In addition to his very busy job, he attended to widows, orphans and the elderly – as Christ commanded. He was a visionary and his work on Capital Campaigns helped the Arkansas State Student Department establish funds to benefit student work across the state for years.  His work for the University of AR BSU yielded over a million dollars in an endowment that again will allow future students to benefit from the ministry.

I know many generations of students and their children who were impacted by Jamie Jones. We all have funny stories and touching stories about Jamie. I think we would all agree that the word we  think of when we think of Jamie is integrity. It is said that integrity is what you do when no one else is looking.  Webster says “integrity – the quality of being honest and having strong moral principles; moral uprightness.” That’s Jamie Jones. A man of integrity. I am certain that he was welcomed by his Savior with a well-done my good and faithful servant. I will miss you Jamie. What an honor and privilege to have known him and to know that I will see him on the other side!

jamie jones

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Follow the Yellow Brick Road to Rachel’s Pink House

Congress is back in session this week. Time for an update. When  last we left the ABLE Act, it had unanimously passed the Ways and Means Committee. Next stop House Rules committee and hopefully a September vote to make this law. The ABLE Act’s journey began over seven years ago.

Seems appropriate for me to take a little trip down memory lane and look at ABLE and the Mast family back in 2007 when the bill was first introduced and look at us today. I want to begin by saying that even before Rachel was born we were advised that she could not have more than $2,000 in assets without jeopardizing government supports. You will need to pay money to set up a special needs trust in order to save for her future which, by the way, will probably cost as much as your own retirement. So those of us who need to save the most have to pay money to set up a special needs trust and pay taxes on what is in the trust on an annual basis because we will probably need some government supports to support Rachel’s life? Sounded crazy in 1999 and still sounds crazy in 2014.

In 2007 we were living in Memphis. This is a family picture from Jonathan’s St. Jude marathon in December of that year.

race family 2007

Rachel would finish 1st grade with Mrs. Morphis and start 2nd grade with Mrs. King.  She would be in her third and fourth plays at the Bartlett Performing Arts Center. Here she is as a Sea Horse in The Little Mermaid.

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This is her team at the Down Syndrome Association of the Mid-South Buddy Walk.

buddy walk 2007

That same year I became the first Executive Director of the Down Syndrome Association of Memphis and the Mid-South.  The Financial Savings Accounts For Individuals with Disabilities (FSAID) was first introduced in Congress by Congressman Ander Crenshaw (R-FL) and Senators Bob Casey (D-PA) and Orin Hatch (R-UT). This was the beginning of an almost eight year march to pass a common sense law so individuals with disabilities and their families could save like all other Americans.n This was the beginning of today’s ABLE Act.

Since that time, here’s a little of what’s happened.

  • Some version of the ABLE Act has been introduced in four Congresses.
  • Jawanda Mast reached out to Tennessee Congressional delegation for support of this legislation.
  • The Mast family followed the yellow brick road and moved to Olathe, KS

dorothy rachel w basket 08

  • One or more members of the Mast family visited Washington DC five times to advocate for this bi-partisan bill and other legislation that would benefit those with Down syndrome.
  • There have been many trips to the home offices of the Kansas Congressional delegation.
  • The Buddy Walk on Washington and the National Down Syndrome Society (NDSS) Ambassador program was initiated by NDSS as a means of becoming more effective in advocating for federal and state laws that benefit individuals with Down Syndrome.
  • In 2012 Rachel made her first trip to Washington DC as self-advocate. She declared to Senator Moran that he needed to co-sponsor the ABLE Act so she could live in a pink house. It has become the symbol of her march toward independence.

moran_yoder awards

  • The Achieving a Better Life Experience (ABLE) Act* of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by Senators Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Representatives Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX).
  • Our  Senators Jerry Moran (R-KS) and Pat Roberts (R-KS) and Congressman Kevin Yoder (R-KS) are among the 75 Senators and 380 United States Representatives co-sponsoring this bill.
  • No bill on the Hill has more bi-partisan support.

In 2007 when the ABLE Act journey started, Rachel turned 8. This year, 2014, she turned 15 and started high school.

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She was in her 15th play, Shrek the Musical.

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This is our family’s picture from last year’s Down syndrome walk.

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It will be only a few short years until Rachel will be pursuing some type of post-secondary program. We hope that involves the University of Arkansas. She’s thinking the University of Kansas and that would be okay too!  A few short years later, she will be needing a job and will want to be living in that pink house. Hopefully, she will be able to have a job that helps to pay for most of her needs. Being a realist, I know that she will need some government supports to be able to have post-secondary training, to become independent and live her dreams.

So today I say to Congress, please send the ABLE Act of 2013 to the House and Senate floors for a vote. Show the American people that Democracy can and does work. Show them that you can come together and pass a bill that makes sense. Pass the ABLE Act so Rachel can follow the yellow brick road right to that pink house.  The time is now to do the right thing. #passTHEABLEAct and send it to the President’s desk to sign into law NOW!

Give us something to really celebrate during Down Syndrome Awareness Month in October.

#passtheABLEAct now!

 

* The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647). The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. 

The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. – See more at: http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/#sthash.TIRnLFV3.dpuf
The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX).  – See more at: http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/#sthash.TIRnLFV3.dpuf
The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX).  – See more at: http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/#sthash.TIRnLFV3.dpuf

 

 

 

 

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I’ll Take Mine with Down Syndrome, Please

The debate rages on. A few weeks ago biologist Richard Dawkins caused the Down syndrome community to go into full attack mode. In response to a woman’s hypothetical question about whether to carry to term a child with Down syndrome, he wrote on Twitter: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”   He went on to say that his view was “rooted in the moral principle of reducing overall suffering whenever possible — in this case, that of individuals born with Down syndrome and their families.”

This is not new.  Back in 2011, I wrote the blog post below in response to comments by a healthcare professional about aborting babies because they had Down syndrome. In July 2013, I wrote the blog “Taking Away the Down Syndrome” in response to the new research that says they may be able to shut down the extra chromosome.  It is my all time top blog in terms of readers. I don’t want to reinvent the wheel today though. I just want to post what I’ve already said. Rachel and others with Down syndrome are not afflicted. They are not broken. Research says that most people with Down syndrome are happy. Their siblings are happy. Their parents are happy. That doesn’t mean it is not hard. That doesn’t mean it isn’t exhausting. It is called living.

So here you go.

I’ll Take Her With Down Syndrome, Please

Reprinted from November 2011

This weekend we traveled to Little Rock to the Arkansas-Mississippi State football game. One of the highlights of fall for me is traveling to the Little Rock games where we spend a little time with my family and my sister, dad, Jonathan and I go to the games. It’s our tradition and I love it.  We ran into a good friend of ours, one we don’t see often but we have common ground way beyond football. She has invested 30 years of her life into children with disabilities. We have some great conversations.  She has a pure love for individuals with Down syndrome and other disabilities. She has a true respect and a beautiful grasp of what all of it means.  She was sharing about a family (no names involved) she had just met who had a baby with Down syndrome.  Apparently some of the early tests showed a high risk for Down syndrome.  A nurse told them the sex of the baby followed with a comment that they might not want to know this because if the test confirmed the “baby was a Downs, they would want to abort.”

Sweet baby Rachel 4 months.

This appalled our friend.  This should appall us all.  We shared with her some stories we have heard from families through the years. Many stories where health care professionals made such judgments and insensitive statements. Many people who have never even met a person with Down syndrome but they feel comfortable interjecting their own personal views on a family during an emotionally fragile time.  We went on to share with her about the new prenatal tests that will be only a needle stick as early as 10 weeks into a pregnancy.  Like us, she is not opposed to tests but she was truly shocked by the stories of how biased information is presented to families and how openly celebratory some seem about “eliminating” the Down syndrome population.

jaffe age 3 looking back

Dr. Brian Skotko had an op-ed on this very subject in USA Today last week.  Under comments, this was posted by a reader: “just can’t imagine why with knowledge ahead of time one would allow the birth of a baby with any major mental or physical handicap to occur. You wouldn’t walk into a Best Buy and say, “Excuse me, I’d like to buy a broken television,” would you? So why would one allow a broken child to be born?”  I had a prenatal diagnosis.  There are days that I don’t like some of the things associated with Down syndrome. I make no secret that given a choice, I wish Rachel didn’t have Down syndrome.  I did not say that given a choice, there would not be a Rachel. I had that option available.  Even on the worst day, I would never want there to not be a Rachel. I hope you followed that.  My question for the broken toy guy is this: What do you do with people who break after we get them here?  Do we then start to determine that this person became addicted to drugs or alcohol so we need to get rid of them?  This person was in a serious car accident and has brain damage and physical limitations now. Do we get rid of her? Perhaps we could also apply that to poor parenting skills and eliminate those who are substandard parents as well.  There are lots of broken people in this world but most of the people I know who have Down syndrome can’t be included in that group.

tq8

For those of you who are Christ followers, a very wise friend said this to me in the early days of our knowledge that Rachel would be born with Down syndrome:  “It is okay for you not to want her to have Down syndrome. That doesn’t mean you don’t want her and that doesn’t lessen your faith.  Even Jesus told his Father, the creator of the universe, “not my will but yours be done” (Luke 22:42). With that, I will take mine with Down syndrome please.

rachel up close at 8th dance

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Perspective on Inclusion from a Worship Minister

Yesterday, I posted a blog “The Hardest Place for us to Take Our Special Needs Child? Our Church.”  This was my Facebook introduction of the link: “While our family has overall had very positive church experiences, we have had some moments. I get a lot of feedback from my own blog about the lack of inclusion in The Church for individuals with intellectual disabilities. This blog speaks to a different perspective. I am posting in hopes that those who need to see it will. Thanks to the author for sharing her heart that represents so many.”

beautiful baptism smile2 - Copy

I knew it would cultivate quite a bit of discussion because it always does. I’ve had some interesting conversations through the years and in the past few months with

  • People who want churches to be more inclusive
  • People who want more segregated special needs programs
  • Church members and staffers who want to create a more welcoming environment and
  • Church members and staffers who are trying to figure out why parents of individuals with special needs often feel excluded.

It has solidified my thinking that we have to educate people. This summer a gentleman was genuinely horrified when I told him of a family who had been told by a Christian church that their son with autism couldn’t come to Sunday school, and they would not provide childcare during worship. Non one at this church had ever met the child or the family. They offered the parents the option of sitting in the media room with him and watch worship. This may not be the norm but I’m not sure it is the exception either. Likewise, I spoke with someone who told a horrible story about a family sending their child with Aspberger’s to camp and not really preparing the staff for how to manage it. That, too, should be the exception.

In a Facebook discussion thread, I also clarified my introduction with this comment: “When I mention The Church – I’m not referring to one specific church. I’m talking about The Church as in the one Paul and Jesus are referring to in the New Testament. There are certainly many, many churches doing a great job with individuals with disabilities but from the feedback I get from readers around the country, it seems it may be the exception. Awhile back our own worship minister wrote a great blog about his work with Rachel. I’ll post it tomorrow!”

So here you go. I think all of us have a lot to learn from Pastor John’s blog. Special thanks to him for sharing this on his blog a few years back.

Just Like You

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By John Hollan, Pastor of Worship, Blue Valley Baptist Church
“At the age of 16, before I even had a clear understanding of faith and following Jesus, I was offered my first paying church job. I was the Interim Music Director for a small Baptist church on the Texas Gulf Coast. There hasn’t been a time in the 29 years since then when I have not been actively involved in church music ministry. I’ve planned and led countless worship services, served as church accompanist, directed choirs, led mission trips and choir tours, and been involved in any number of other things you can imagine, all as a part of my calling to ministry.
However, even with 29 years of ministry under my proverbial belt, I realized just last year that there was one thing I’d never done in the church: I’d never taught in a setting that included people with Down syndrome. I had acquaintances who live every day with Down syndrome in their families. My wife had taught students with special needs. But I had never been in that position.\
A particular family of friends who are involved in our church have a daughter who has Trisomy 21 (the formal name for Down syndrome), and their daughter has been involved in our circle for several years, both through theatre and through our age-graded music program at BVBC. Rachel is a delight, but until last year I only knew her casually… When she started middle school it meant that she would now be eligible to join our student choir, and I knew for certain that Rachel would participate. I’ve known and loved Rachel for a while now, but in almost three decades of working in the church, she would be the first child I ever taught who had Down syndrome. Fortunately, her parents are articulate and informed and they have been my best teachers as I embarked on a journey of learning how to include Rachel in our ministry… After all, our student choir functions differently than the children’s choir where she had been so engaged. At the onset of the year I spoke with her mom and explained my inexperience in teaching children who are differently abled. Her solution to my problem was simple: Ask questions.
And so, I started learning… I did a small bit of reading and web surfing, but mostly I just did what seemed right in including Rachel in the workings of our choir. I knew her parents have very high expectations for her in regards to effort and attitude, and I found that all I had to do was teach accordingly. It was a great year for BOTH of us, I believe, and now I find myself feeling a stronger responsibility not only to include her in the workings of our ministry, but also to find ways to help her follow Jesus more effectively. That is, after all, a pastoral responsibility.
It was a startling thought to me when I realized that churches on the whole aren’t always prepared to disciple those who have cognitive and physical challenges. My calling as one of the pastors at BVBC is to shepherd the people in my charge, and God has given me all kinds of wonderful people to lead… a couple of them happen to have Down syndrome. Granted, I’m FAR from being proficient in maneuvering their special educational needs, but I am learning ways to treat them as they want to be treated… just like I treat the other kids in my choir.
Recently Rachel had the opportunity to be included in a short 13-minute film called “Just Like You” that features three sets of real-life friends; in each pair one friend is a “typical” teen and the other has Down syndrome. The film GENUINELY warmed my heart and gave me hope for our future. I would encourage you to take a few minutes and watch it. It’s TOTALLY worth your time. Further, I would encourage you to step into opportunities you encounter that might involve people with Down syndrome. It’s not hard… just don’t shy away.
When we know better, we do better.”

Centrifuge Summer Camp Lunch Bunch

Centrifuge Summer Camp Lunch Bunch

 

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Every Love Story is Beautiful But Ours is My Favorite!

Today will be an unremarkable day for most people. For me it is a very remarkable day because on this day 25 years ago I married my best friend and love of my life. Really, it doesn’t seem like 25 years. I am more the realist than the romanticist but I still enjoy a great love story, especially the real life ones. The real life ones like I saw on the news the other day when folks had been married 78 years. The real life one in Hollywood like James Garner who was married to the “love of his life” Lois Clarke for 58 years.

My favorite love story is ours though. I know it is corny. I don’t care. Our wedding day was a sunny, hot day in Fayetteville, Arkansas. We were at our beloved University Baptist Church where we met.

wedding outdoor

We were surrounded by loving family and friends. We were embarking on the great adventure as Jonathan would say. A great adventure it has been. Fairy tales begin with once upon a time and end with and they lived happily ever after.  People seem to forget that even in fairy tales a lot happens between the pages. Some of it is heroic and romantic but some of it is gunk! Marriage is a covenant, and for us the miracle is that God took two imperfect people and we are living out our own fairy tale with the heroics, romance and gunk!

Wedding gift from Neal. We still have this tray and the cups!

Wedding gift from Neal. We still have the set!

We have had a great life. I think Jonathan would agree that we have been blessed beyond what we deserve. I have married someone who is kind and sweet and fun and funny. He listens. He is a good dad. He sets a good example. We don’t have many arguments, but he usually lets me win. (Secret: That’s because I am usually right. Ha!) Jonathan is not perfect but he is the perfect man for me and the best daddy a little girl could ever have hoped for. He wants to go to Rachel’s activities including those dance recitals. He wants to go to open houses and he wants to be here for IEP meetings.

Jonathan loves my family and he has been a tremendous son-in-law, brother-in-law and uncle to them. He has brought a lot of laughter to our family. My family loves Jonathan and has been a great source of love and support for him.

This is Jonathan's favorite picture from our wedding. The dress was loaned to me by my cousin.

This is Jonathan’s favorite picture from our wedding. The dress was loaned to me by my cousin.

We have had a lot of things happen in our 25 years, some good and some of that gunk. We often say you can’t make up the stuff that happens to us and it is so true. We have done some traveling. We have gone to lots of sporting events. We are both giddy that college football season starts this weekend. We have many friends. Some of those friends we both married. Others we’ve added along the path. Jonathan has had two ACL re-constructs – both compliments of church softball. We learned our unborn daughter would be born with Down syndrome the day after he had a colorectal tumor removed. Our church and our friends rallied around us and to this day many of those same people support us even if it is by distance. Love and support come in different packages and sometimes it’s a kind compliment on Facebook and other times with a donation to one of our Down syndrome causes. We’ve lost grandparents, a parent, other relatives and close friends.

Jonathan has tolerated all my causes that I get involved in. He has judged a lot of 4-H speaking contests. He has set up a lot of tables for Buddy Walks, painted the Down Syndrome Wheel of Facts, loaded countless cases of water and soft drinks on trucks, taken out lots of trash, allowed our house to be turned into the Down Syndrome Association of the Mid-South, fed baby chickens that needed to stay overnight for a poultry project, and much more. Some of this he has done for Rachel but some of this was pre-Rachel and he did it because he loves me. Jonathan knows what is important to me and it makes it important to him because he loves me. That’s part of that give and take of a marriage.

Through 25 years and nine moves, we’ve attended a number of churches where we have always gotten involved. When the going has been rough like cancer and Down syndrome, they were the hands and feet of Jesus for us. We were in graduate school at the University of Arkansas when we met at University Baptist Church. We were a part of fun group that loved Jesus. We had great mentors. Through the course of our 25 years the core has been our church and our love for Jesus. One of our great loves is that through my 4-H Extension agent work and our churches we’ve been a part of many, many young people’s journeys. Watching them grow into capable, contributing adults and parents has been a great joy.

Back when we first started our courtship, a sweet friend said to me, “I believe you and Jonathan have true love. I don’t know if it is forever, but for this moment in time in it true love.”  I would say true love is forever and ours has been.

I don’t know what the rest of our love story will look like, but I am looking forward to doing these next chapters with the love of my life. Happy anniversary, Jonathan. I love you.

Saddle up your horses
We’ve got a trail to blaze
Through the wild blue yonder
Of God’s amazing grace

Let’s follow our Leader
Into the glorious unknown
This is a life like no other
This is the great adventure

Come on, this is the great adventure
Saddle up, saddle up your horses
We’ve got a trail to blaze
Through God’s amazing grace

From “The Great Adventure” by the great Steven Curtis Chapman

candleight

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Inclusion in Action: Welcome to High School

High school started a week ago today. Over the course of the past week, I have been able to see the tangible benefits of inclusion in action during Rachel’s first week of high school. Don’t know what images you have when you think of your child with Down syndrome or another disability in high school but reality has been different from my vision – in a good way.

At the Freshman ice cream social hosted a couple of days before school’s start, Rachel saw many of her freshman friends.  Most had that “deer in the headlights look.” Rachel found some older girls she had met at acting class. She met the student council president and they connected. She met other student council members  This little group chatted with her for a long time and offered to help her. She was in heaven and declared that she thought student council was for her! I would agree with that.

Ice cream social with South Girls.

Ice cream social with South Girls.

The first day of school is a half day with Freshman only. They have what they call Falcon Mentors. Rachel’s Falcon Mentor is our precious friend Andrea Strickler.

Fabulous Peer Mentor!

Fabulous Peer Mentor!

Andrea is a junior and an amazingly gifted singer and actress. We know her through CYT. Andrea has a sister with Down syndrome who graduated high school last year. We requested Andrea as Rachel’s peer mentor and she requested Rachel. I cannot say enough about this wonderful young lady.  She met Rachel at the door and guided her through the day. Rachel needed a good, confident start and Andrea helped make that happen.

9th 1 day rapping 9th 1 day lunch

So this is how I was greeted at pick up. Me: “How was your day?” Rachel who was carrying two t-shirts responded,  “Amazing. It was an amazing day mommy. I won the dance-off!” One shirt for all the freshman and another for winning the dance-off. What can I say? The girl loves to dance.

Later that day, Andrea sent me a video of the dance-off, but I couldn’t get it to load to my blog. She also posted this to Facebook:

astrickler fb entry day 1 9th

The Student Council president, Ashley, sent me a lengthy text. She wanted to be sure I knew what a great day Rachel had and Rachel had WON the dance-off. She sent me seven pictures. Here are a couple.

dance off 2 dance off 1

Thursday was a really big day too. It was the first day with all 2,117 students. The school floor plan is a bit confusing, too. Ms. Andrea met Rachel to escort her in. I know that once Rachel learns her way around she will be fine. There were still many i’s to dot so I prayed Joshua 1:9 a lot.  I was very concerned about lunch. I had found no one with the same lunch as Rachel. If we are going to have an issue, it is during these unstructured times.  So here she goes to lunch with several hundred people in a new setting with new lines. Also, I didn’t want her sitting alone or with staff.  Again, she’ll be fine once she gets the system but I really didn’t have information on how it was going to work. Then, I get a text from one Alli Handy. Alli goes to church with us. She’s a senior. She and Rachel have become friends at church and I’ve been teasing her that she is responsible for Rachel this year. This is the picture and this is the message:

“Look who I found at lunch today?”

alli & rachel lunch 1st day

Seems Alli has the same lunch and they eat together every day. Literally, this mom’s prayers answered.

A few days later Rachel told me, “Alli Handy has lunch with me everyday and she’s senior.” Envision her big eyes and ginormous smile as she shares this. I shared with Alli and she said they were having a great time and now her group of friends knew Rachel and they were watching out for her too! I few weeks back I blogged about the importance of adult mentors. I would say the value of positive peer mentors cannot be overstated.

Rachel now has new followers on twitter – students she has met at her school.  I ran into a friend of mine who has a senior son. He didn’t know Rachel but he told his mom about Rachel winning the dance-off and what a great job she did. Another message for this mom.

I would say this is inclusion in action Because Rachel has always participated in typical activities, she knows people outside the labels of CBR, resource, DS, and the rest of “disability alphabet soup.” She’s hanging out with other students who fortunately have stepped it up and taken care of her in these first days. I do not believe this would have happened had Rachel not been included at school and community activities for all her life. Look at the trail of people? CYT, school, church, theatre and there are some dance friends in there too!  That’s inclusion in action.  Now, if we can only get adults to learn to put aside labels and low expectations?

Back of Class of 2018 shirt. Remember, this is Rachel's Great Adventure!

Back of Class of 2018 shirt.

This is Rachel’s Great Adventure!

Disclaimer: Since I try to be honest with my readers, I must tell you that there have been many behind the scenes happenings that could derail Rachel’s train. We have shielded her from all of that. I think it is important to model respect for Rachel.  We will let Rachel be Rachel, and we will deal with the adult issues and the train wrecks.

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High School: Be Strong and Courageous Rachel

A dear friend gave Rachel a wall hanging for her birthday. It quotes Joshua 1:9.

joshua 1-9

I know that verse but hadn’t thought of it much until the gift. As I kept seeing it, I realized that God intended the gift more as a reminder for me. I realized that this is our verse to claim as our guiding principle for these next four years. I even wrote it on Rachel’s dry erase board on her door. So today as she starts this endeavor called high school, I have a little letter to her. I’m inviting you to read it.

Dear Rachel,

I imagine that 15 years ago today we were at Special Kids and Families with the other Ben’s Angels. We were all learning together then and we’ve been learning ever since. Your friends Ben, Leigh and Brooke still live in Tennessee and they started high school last week. I want you to grow up. I want you to achieve your dreams even if that is a pink house in New York City. I just didn’t know that 15 years would pass so fast.

1st day of kinder

So today as you go out the door, I am going to remind you of the words of Joshua that I’ve been quoting a lot lately. “Be strong and courageous. Do not be afraid or discouraged for The Lord your God is with you wherever you go.” I know you are excited about high school, but like everyone else you are a little nervous too. You are one of the most courageous people I have ever known. When your brain is full, you go on. When you have a hard time understanding what the teachers or friends are talking about, you continue to listen and take notes. You look up directions on your iPad and show your daddy and me. Unlike me, you even read the directions on games and apps. This summer you have told me that having Down syndrome is hard. You tell me that if you didn’t have Down syndrome, people could understand what you say better. Still, you keep on going.

The book of lists says that the number one fear of American adults is public speaking. Yet, you get up in front of people and dance, sing and speak. You have introduced Senators and Congressman. You led the pledge for the Governor this summer.  They didn’t want you to be overwhelmed but no worries. You could have run the show. You have spoken to hundreds of people about Down syndrome. Your stint in Just Like You Down Syndrome has made you kind of famous.  Even people waiting in line for the lady’s room recognize you! I know you will do your very best in high school, and you will have an awesome experience.

Now, I’m going to tell you a secret. I’m more than a little nervous today. I’m scared. I’m really having to cling to that verse. I’m not scared about you though. I know you will be strong and courageous and do your very best. I’m scared that others won’t do their part. There you have it, Rachel. I have done my very best to be sure that everything is in place for you to have a good transition to high school, but I am not confident that everyone else will do their part. I have insisted that you be kept in general education classes in spite of being reminded that almost no one else with Down syndrome has done this. I have provided videos and books. We have had meetings – lots of meetings. We have tried to put it all in place. I like to control everything in my environment and God likes to remind me that isn’t going to happen.

You have a good and kind heart. You are a romanticist and you are fiercely loyal to your friends. You have a strong moral compass and think everyone else should and does. Because you have a kind heart and loyal nature, you believe all people to be kind and loyal, too. I am scared that some of those other 2,149 students at your school will use those great character traits to tease you or hurt you. Statistics say that about 70% of young ladies with intellectual disabilities are sexually abused in some way. I want you to be the 30%.

When you were six years old, you auditioned for your first play, Pinocchio. You were cast and were the most precious Magical Baby Doll ever.

pinocchio

That day God taught me to never let my fears stop you from doing what you need to do or what He needs you to do. I didn’t turn around and go home. The rest is history as your great love is, hands down, the stage. And you do light up a stage. And you will light up Olathe South!

So now you go on and tackle a new group of people destined to become Friends of Rachel. Show them the possibilities by showing them your abilities. Show them that it is not because the law says so but because it is so you belong with everyone else.  And always remember that no matter what, I love you. I am here for you. I will always be your greatest fan and cheerleader. This is the Great Adventure!

 

 

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