Not So Successful Start

Rachel’s sophomore year seems to be off to a great start. We have a capable case manager. Again, Rachel seems to have a really good teaching team. She takes great pride in her role as the sophomore girl’s volleyball manager.

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She has been working hard and has done well on most of her tests and work. We read Fahrenheit 451 this summer. She is reading it again with her class. She was telling me today why Montag is her favorite character. Her geography teacher let me know that she aced the chapter test yesterday and even got the extra credit question that wasn’t on her study guide. She studied a lot for that test. The terms were difficult for her. She took great pride in telling us that the other students were impressed when she knew what glacier was during a game.

She seems happy. My friend Sheila says that’s what is important. I have always said I want Rachel to love Jesus, be happy and have good self-esteem. I can assure you that every year does not start so smoothly. Oh in Rachel’s eyes every year starts great. However, without going into too much detail, I can tell you that most years part of me dreads school starting because there are usually lots of behind the scenes train wrecks to manage. It’s exhausting. Not so this year. I’m counting my blessings.

Others are not as fortunate. The past few weeks my conversations (live, text, phone, email and social media conversations) are sprinkled with moms wanting support and answers and needing to vent about issues related to school and trouble in the land of inclusion. More specifically issues related to their child with Down syndrome being included in the general education classroom.  Most years a common theme occurs. This year’s common thread seems to be related to modifications and/or accommodations in the general education classroom. Sounds kind of like this, “The teacher said she/he doesn’t know how to modify the curriculum so would you mind if we send Sally to the resource from for that class?” “We thought Timmy could go to the SPED room first thing in the morning until we get the other children settled.”  I’ve heard any number of versions of this applied in multiple settings, a variety of grade levels and in different communities. Some after only a couple of days in school.

IDEA was passed 40 years ago. It specifically says “to the maximum extent appropriate, children with disabilities are educated with children who are not disabled, and that special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”

Then, there’s this thing called research.

On the Wrightslaw website, I found this great piece with a lot of information about research as it relates to inclusion verses pull-out, specialized settings, and segregated education. Here are a few samples:

There is a strong research base to support the education of children with disabilities alongside their non-disabled peers. Although separate classes, with lower student to teacher ratios, controlled environments, and specially trained staff would seem to offer benefits to a child with a disability, research fails to demonstrate the effectiveness of such programs (Lipsky, 1997; Sailor, 2003).

Students with disabilities in inclusive classrooms show academic gains in a number of areas, including improved performance on standardized tests, mastery of IEP goals, grades, on-task behavior and motivation to learn (National Center for Education Restructuring and Inclusion, 1995).
In addition, children with intellectual disabilities educated in general education settings have been found to score higher on literacy measures than students educated in segregated settings (Buckley, 2000).
So explain to me exactly why recommending pull out, segregated classrooms, and specialized settings are being offered and encouraged as the first option and as the norm?

Wrightslaw is a tremendous resource. Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

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Dear Teacher – Most Read Blog

Back to school time so many of you requested that I re-run this piece that originally ran August, 2012. Dear Teacher, IEP Wounds and now Taking Away the Down Syndrome are my three most read blogs. You have my permission to print, plagiarize and share with anyone who might benefit from this letter. I have a different letter with more specifics that I share directly with teachers, and I am happy to share that if my readers are interested.

Dear Teacher,

Congratulations! My daughter Rachel is going to be in your general education class this year. I suspect that you haven’t had a student with Down syndrome in your general education class before. I suspect you are a little nervous, and you might need some information so I wanted to share. Regardless of your faith persuasion, I hope it brings you confidence to know that we have been praying for you since before Rachel was born! 

As you prepare to welcome Rachel and many other students, I want to remind you that you are not alone.  While it is your responsibility to help educate Rachel, you are fortunate that you have an outstanding resource teacher and paraprofessionals to give support.  Still, she is a part of your class. Yes, she has Down syndrome but she is in your class to learn and that is not the resource teacher or paraprofessional’s sole responsibility. I hope you do not see Rachel as a burden but as a curious student who will work very hard to do her best and who will learn differently than some of your other students. Her best will not look like most of the other students and you won’t be there when we are watching the Olympics and she says “Zimbabwe is in Africa. I learned that in school.”  You will probably never know everything she learns from you. We know she won’t learn exactly what the other students do, but she will learn. She will not regurgitate things on a test like some of your other students. She’ll need her homework and test presented in a certain way to find out what she knows. Then again, most of us have different ways of learning.

Don’t panic about her standardized test scores bringing down your numbers. Though I am not a fan of standardized tests, even after the passage of IDEA we had years of many educators not teaching curriculum to our students with special needs. So the pendulum swung a little too far the other way. That isn’t your fault, but it isn’t Rachel’s fault either. Please remember to give Rachel a little extra time to process things. The 10-second rule is a good one. Give her 10 seconds to think about the first question before you move on to the next one.  Please communicate with us. If there is something good or something of concern or something you just aren’t sure about, come to us and we can help. Come sooner instead of later.

Then, I want you to know that you are lucky to have me as a parent to work with you. There will be days you won’t believe that. There will be days you are certain that I am possessed, but I do what I need to do to see to it that my daughter gets what she needs. A long time ago I was told that Rachel couldn’t be in the general education kindergarten because she couldn’t “function” in a general education classroom. We demanded that she be fully included and now I just say, “The proof is in the product.” That is just one of my battle scars. I have a lot of scars that you don’t know about. Maybe that will help you to understand why I am a self-proclaimed high maintenance mom. I am not apologizing for that.  I will also be your biggest fan and supporter. I will bring you special treats, write letters of support for you, ask legislature to give you more money, nominate you for awards and so forth. First and foremost, I will always be advocating for my daughter to learn and helping you in any way I can.

Rachel is fiercely independent. Her independence is a gift and a curse. Her independence will help her in life but it also makes her not want to have help. No matter how much she loves the para’s, she really would prefer they go away and has told them so from time to time. Honestly, she doesn’t want a paraprofessional anywhere near her because she is a 13-year-old diva girl who wants to be like everyone else. She wants to have friends. She is boy crazy. She wants to be included. She knows that there are some things at school that are very hard for her. She wishes it wasn’t that way, but it is. She will tell you that her brain is full or tired and I am guessing that is true sometimes.  A lot of what she does is tied to that need to be one of the girls. She is a pleaser and usually will not intentionally try to make you irritable. She will also tell you what she thinks you want to hear in order to be a pleaser. Rachel is also funny, loving, loyal and confident. She has great stage presence and will tell you so. 

Our family has high expectations so we expect Rachel to do her best. We expect her to learn. We know that some things are hard for her but that is life. Life is hard for all of us sometimes, and we don’t have room for pity. We want her to grow up to be independent. She wants to be a teacher, get married and live in a pink house. We want that for her too and we know that what we do now impacts that.

We are anticipating a great year in 7th grade. I want to thank you for investing your life in education. I believe that teaching is the highest of calls. We have been blessed with the best teachers I can imagine. If you could speak to most of them preschool through today, almost everyone one of them would say, “I learned more from Rachel that she did from me.” They would say that may sound cliche’ but they are better teachers to all students and better human beings because they had my Rachel in their class.  In May I suspect you will be able to say that too.

Sincerely yours,

Rachel’s Mom

7th 1st day 7th last day


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Speaking of Congressional Champions

Rachel and I had the honor and privilege of joining our Senator Jerry Moran (R-KS) for a lunch meeting today. We love Senator Moran for so many reasons. One of his district office staffers, Michele, coordinated today’s logistics and met us when we arrived. There were quite a few people Rachel knew and Michele said, “Rachel you know more people than I do!” Rachel, in very matter of fact kind of way, responded “I’m famous.” You have to love her positive self-esteem.

sen moran elephant club up close

One of the reasons we love Senator Moran and he is one of our champions is because of the way he treats people. From the first time we met him, his warmth, love for people and commitment to constituents has been evident. He listens to people. On a February day in 2012, he listened as Rachel invited him to co-sponsor the ABLE Act because “I want to live in a pink house.” Yes, his Washington DC office is where the pink house concept was unveiled. The room filled with laughter but no one, least of all him, has ever forgotten about it. At that moment on that day, a lasting friendship was forged between a young lady named Rachel who happens to have Down syndrome and a United States Senator. Senator Moran signed on as a co-sponsor and signed on again until we got the job done. That’s a big reason he is one of our champions.

Senator Moran has posed tough questions and important questions to the NIH regarding funding, research and initiatives that benefit individuals with Down syndrome. Another win in our champion’s column.

We love Senator Moran’s staff in DC and here in KS.  They always welcome us warmly and openly and treat us like we are important. When the Senate passed the ABLE Act, one of his home staffers called and brought a Pink Gingerbread House kit to Rachel. She wanted to give Rachel her first pink house.

Today, one of the biggest reasons he is our champion is because it was recently announced that he is the Senate Co-Chair of the Congressional Down Syndrome Task Force. Senator Robert Casey (D-PA) will be Senator Moran’s co-chair in the Senate.  Representatives Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), Eleanor Holmes Norton (D-DC), Ander Crenshaw (R-FL) Cheri Bustos (D-IL) are leading the efforts on the House side. The purpose of the Task Force is to provide a forum in which members of Congress and staffers can actively engage in a dialogue to improve the quality of life for people with Down syndrome and their families. The Task Force is central to helping raise awareness of Down syndrome on Capitol Hill and promoting public policies that will enhance the quality of life for those with Down syndrome. We believe it’s important, and we are so proud to have our Senator as one of the leaders.

Before lunch we had the opportunity to say thank you and talk briefly about the Task Force. He was gracious and said he was looking forward to working with Senator Casey and others to do some good work on behalf of individuals with Down syndrome. He  looked at Rachel and told her,” You are the reason for this.” Then, he wanted to know about her job. He had heard she had a part-time job and wanted to know all about it. She proudly told him she works at Robek’s making smoothies. She told him about Olathe South and they discussed Student Council.

At the end of his remarks today, Senator Moran recognized Rachel. She beamed as he said “We have an example of a great politician here with us today. Her name is Rachel Mast.” He went on to share about her work on the ABLE Act. He shared how this was a great example of working together across party lines to pass a good piece of legislation. He mentioned her job and her service on the Olathe South Student Council. Oh baby girl, the difference you have made in 16 short years.

Speaking of champions, these are just a few of the reasons why Senator Moran is one of ours.  Thank you Senator for being our champion and a champion for all individuals with Down syndrome and their families.


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Sophomore Rachel, Same Challenges as the Rest

Rachel headed off to school this morning as a sophomore.

Sophomore year - 1st day

Sophomore year – 1st day

She is one of the smallest kids at the school but she is full of life. Over the past week she has been going to Student Council events in preparation for Freshman First Day that she was able to help with yesterday. Student Council has been a great fit for her.

Rachel headed to help with Freshman First Day

Rachel headed to help with Freshman First Day

She practiced her little speech over and over again. She was a little nervous and that is not like her. However, she has told us of late “people have a hard time understanding me” so she is more self-conscious about her speech. So much so that she wanted to start having speech therapy again. We dropped it for middle school and 9th grade. She is a good little self-advocate, and I am very proud of her for telling us this.

As I do around the beginning of every school year, I have been reflective. I thought way back to when I was starting 10th grade, and I have images of my horrible school picture with my horrible hair. I had a Dorothy Hamill. It was a wedge haircut. I never liked any of my school pictures and clearly didn’t want my picture taken.  I will spare you from viewing it!

My brain has primarily focused on all the things that we depend on other folks to do to make things go smoothly for Rachel. She does her part, and we are hopeful they will do their part. The beginning of school is exhausting.  We had a very good team meeting on Tuesday. I am most appreciative of the group’s participation. This upfront investment will have huge pay-offs for everyone.

As I thought about those two things, I also thought about Rachel and how she has grown into a very typical young lady. She has her struggles related to it taking longer to process and all that but she mainly has the same challenges of all teenage girls. Wanting to have lunch with friends, wanting to be inviting to the Friday night football game by friends, wanting a boyfriend, trying to figure out how to converse with boys and new friends and thinking mom and dad are too involved in her life! She wants to be like everyone else. She wants to do a good job in her classes. She wants people to understand what she says or more probably what her heart is saying. She wants to be involved. She wants to be popular. She is very typical. Of course, I know that boys will just break her heart and so will many friends and being popular is way overrated. But I am not 16. So I wrote her this note as I sent her off to school. It is composed of her favorite verse and her favorite quote. Her verse is Joshua 1:9,  and the quote is from Cinderella’s mom.

Always have courage and be kind, Rachel!

Always have courage and be kind, Rachel!

Then I found this. I’ve never read it before and I’ve always been a fan of Mother Teresa. It is my prayer and hope that Rachel can treasure this in her heart and maybe I can, too! Go get ’em Rachel!

Anyway by Mother Teresa
People are often unreasonable, irrational, and self-centered.
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives.
Be kind anyway.
If you are successful, you will win some unfaithful friends and some genuine enemies.
Succeed anyway.
If you are honest and sincere people may deceive you.
Be honest and sincere anyway.
What you spend years creating, others could destroy overnight.
Create anyway.
If you find serenity and happiness, some may be jealous.
Be happy anyway.
The good you do today, will often be forgotten.
Do good anyway.
Give the best you have, and it will never be enough.
Give your best anyway.
In the final analysis, it is between you and God.
It was never between you and them anyway.


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My Corporate Champion

A few months ago my husband Jonathan got a call inviting Rachel to speak at an event in Memphis. The call was from Mr. Bob one of Sedgwick’s Senior Vice Presidents who had served on the board of Special Kids and Families. Special Kids was the early intervention program we participated in when Rachel was born. It is where we met our dear and eternal friends Ben, Becky, Joel and Olivia. It is where Luisa, Kelley, Marian, Ruth and Emma forever changed the landscape of our world and so many, many others by investing in little ones who had developmental disabilities.

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A winter morning at Special Kids with Luisa the physical therapist. you can see Ben and Becky in the background too.

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Rachel’s first purse. This picture was used in some of Special Kids materials.

Sedgwick is my husband’s employer.  We love Sedgwick for so many reasons. They are like family to us.  Let me give you a little background. We moved to Memphis from Phoenix when Jonathan was hired by Sedgwick. We were excited to get back to the South, closer to family and the Razorbacks. We quickly developed deep, strong and abiding friendships with folks at Sedgwick. In the course of our first two years back in Memphis and with Sedgwick, Jonathan was diagnosed with colorectal cancer and we learned our unborn daughter had Down syndrome. Sedgwick, from top to bottom of the corporate org chart, embraced us and went on to embrace things important to us like Special Kids and Families and the Down Syndrome Association of the Mid-South.

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When I say support, I want to tell you what I mean. Anytime we extended an invitation to volunteer or join “Team Rachel,” we were surrounded by Sedgwick friends. Early on we invited them to support Special Kids’ fundraising by sponsoring the Bunny Run. They answered the call. Beyond giving money, they recruited volunteers. Colleague’s families became involved. As someone who has done a lot of volunteer management and fundraising, I like to think in terms of partners. Sedgwick became a partner. They went on to become a partner with the Down Syndrome Association of Memphis and the Mid-South (DSAM). DSAM was in their infancy trying to grow a walk and become respected organization serving the needs of families in the community. Sedgwick was one of our first big name corporate sponsors for our the Buddy Walk. In addtion to giving us needed resources, that helped us by giving us legitimacy with other big companies in the area. Their relationship with DSAM has been molded in a different direction now. They are vital to helping the DSAM in the Parents & Schools Partnership and in conducting educational training programs. We no longer live in Memphis but Sedgwick’s commitment to colleagues and community has continued. Sedgwick’s philosophy is to think global and act local. In Memphis, that certainly is true.

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Spirit of SRVS. Our family with “Mr. Bob.”

Friendships we have developed at Sedgwick have led to so many wonderful opportunities. Doreen and E travel to Kansas City almost every time Rachel is in a show to see “Baby Rachel.” Rachel’s participation in Melina’s Bat Mitzvah in Chicago last year happened because of a friendship at Sedgwick.  Our trip to NYC was fit for a Princess because of a friendship at Sedgwick. Ever so often I receive an email from a colleague saying we just saw the Just Like You video and it is amazing. One senior leader at Sedgwick sent it to his adult kids and said “Everyone should see this.”  Just the other day a Sedgwick leader forwarded an industry blog that talked about the ABLE Act.

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Our dear friends the Halvorson at the Spirit of SRVS.

Back to this speaking gig though. A short time ago, Special Kids and Families merged with an organization called SRVS. SRVS has been serving families in Memphis for many years. Mr. Bob now serves on the SRVS board. Each year they host the Spirt of SRVS event. With about 700 attendees it is one of their largest fundraisers for the year. Mr. Bob agreed to co-chair the event and Sedgwick was the title sponsor for the event. As the board works on this marriage of the organizations, they wanted to recognize the history of the organization. So as I understand it, they said if not for Miss Rachel, Sedgwick wouldn’t be a part of all of this so we want to invite her to represent Special Kids. Of course, Rachel and her mom and dad were thrilled to be able to represent Special Kids and Sedgwick. Rachel was part of the welcome ceremonies of this beautiful event. Many Sedgwick colleagues and old friends were there and it was great fun for all of us. Oh and here is Rachel doing her thing.

Rachel Speaking at Spirit of SRVS

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So yes, Sedgwick is my corporate champion. In a time where we hear a lot about all the bad things corporations do, I am proud to be able to be a part of the Sedgwick family. I don’t want to embarrass anyone or leave out a name, but there is a lady name Gina, a guy named Jim and another one with the initials D and N who deserve a lot of credit for all of this. On behalf of many families, thank you!


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We just returned from a few days in Memphis. We had our first stop at my mom’s to celebrate her 75th birthday. Rachel and her MawMaw love each other, and Rachel LOVES birthdays. Fun was had by all.

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The main purpose of our trip to Memphis was for Rachel to speak at a fundraising event. I’m going to blog more about that in a day or two.  We had the opportunity for all of us to spend time with old friends. Rachel mentioned several times that Memphis is her hometown.

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We got home around 9 Monday night. She proceeded to her room for her debrief session with Sally, Marisol and her stuff.  About 10:30 with bright eyes and an infectious smile she came and said, “Mommy come here. I have something to show you.” We have a dry erase board on her door and I write verses, notes, congratulations, encouraging words – that kind of thing. She had erased it and she had written this:

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I peaked in her room and saw that she had her little devotional book reading it. She said this was the verse for the day and she liked it. “God keeps His promises. He does what He says He will do. He is always with us.”

That about says it.

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From a Galaxy Far, Far Away to Advocacy

In case you haven’t heard, I’ve got a new gig. Beginning August 17, I will be the new Manager of Grassroots Advocacy for the National Down Syndrome Society. I follow in the footsteps of the very capable Ginny Sessions Siller. Ginny and I have the same birth day (she is many years younger), and we’ve had the opportunity to celebrate so much in her tenure in this position. I appreciate her good work.

Ginny Sessions Siler, Jawanda Barnett Mast, Sara Hart Weir BWW 2014

Ginny Sessions Siller, Jawanda Barnett Mast, Sara Hart Weir BWW 2014

I am very excited and honored to be extended this opportunity. From the first time I gave a speech about Down syndrome until today, it has been my great privilege to speak on behalf of those with Down syndrome and their families.  It has been a privilege that I take quite seriously. I have often spoken of my years growing up in rural Arkansas as a part of the Joy 4-H Club. For me that’s where advocacy started. For me that’s where learning to work with people started.

Being a 4-H member provided the ground work for me to go on to be an Extension 4-H Agent. I think they are called Youth Specialists now. My expertise was truly in developing youth leadership and working with adult leaders.  I always say it’s not so much about the cows and cooking but about the leadership life skills kids learn through those projects. The speaking, organizing, leading, working together for something greater than ourselves, helping young people become contributing and productive members of society: that’s what 4-H was about.

Rachel testifying on behalf of KS ABLE legislation. Congressman Kevin Yoder (R-KS) is watching on the side.

Rachel testifying on behalf of KS ABLE legislation. Congressman Kevin Yoder (R-KS) watches his friend Rachel from the side.

My work as an Extension 4-H agent allowed me to work with people at the grassroots level to affect change.  We worked to teach people how to “make the best better.” Our work was to help people learn by doing and become the leaders, parents, teachers, farmers, dietitians, researchers, doctors, and yes even the Congresswomen of the next generation! Rep. Cathy McMorris Rodgers (R-WA) is a Congresswoman, mom to a son with Down syndrome and a former 4-Her. I love her for so many reasons.

Rep. McMorris-Rodgers (R-WA), Rachel and Jawanda at BWW 2012

Rep. McMorris Rodgers (R-WA), Rachel and Jawanda at BWW 2012

So today I envision this new role much like my role as an Extension 4-H professional. Working alongside ordinary people helping them learn how to reach out to those around them as we go about the very important work of advocating for individuals with Down syndrome and their families. Reminding people that it’s about relationships. Telling your story to those who are able to make systemic change for better lives for individuals with Down syndrome. Telling your story over and over again because there’s always work to be done. It didn’t end with ABLE or IDEA or ADA. And it won’t end with employment or law enforcement training.

State Rep. Erin Davis (R-Johnson County), Rachel and Jawanda at signing ceremony for the KS ABLE Savings Plan.

State Rep. Erin Davis (R-Johnson County), Rachel and Jawanda at signing ceremony for the KS ABLE Savings Plan.

As I sat here in Johnson County, KS reflecting on life, the title, “From a Galaxy Far, Far Away to Advocacy” popped into my head. In lots of ways those years in Joy, Arkansas seem like a galaxy far, far away. Then, I consider the task at hand and our mission to advocate for the value, acceptance and inclusion of people with Down syndrome. That galaxy doesn’t seem so far away. To steal a line from one of Rachel’s favorite movies “We’re all in this together.”

Group following ABLE passing the House of Represenatatives

Group following ABLE passing the House of Representatives

Now, let’s do this!

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Not Just Like You?

I am cheating again today. Last week I let you know that Rachel was getting her tonsils out. She did and she is recuperating according to plan. She is an amazing patient and a trooper. We girls aren’t accustomed to staying at home so both of us are a little “stir crazy” but all is good.

My Facebook feed reminded me of this blog from two years ago about this time. Since we are still in tonsil recovery or because I am just lazy or because it is the “21st” day of the month, I thought this was worthy of a re-post. I hope you enjoy!

Not Just Like You?

Yesterday it was a great honor to spend our lunch time with some good friends. The occasion was another screening of the Just Like You – Down Syndrome video. Our sweet friend Kim had been wanting to host a viewing in her lovely home. She is a native Arkansan and her Southern hospitality was evident!  We invited some friends – some had seen the video. Others had not. There were adults and teenagers and siblings and friends. It was nice.  As I sat there, it struck me that Rachel is not just like you but probably not for the obvious reasons.

Lunch group for JLY.

Rachel and Savanna intro

Rachel has Down syndrome which means she is not “just like” most people. But as it says in Just Like You – Down Syndrome, we are all different.  For example, one of my doctors says that my back is symmetrically perfect.  It must be unusual and a big deal because he has told Jonathan and me on several occasions. My response: Who knew?  Then, there’s Jonathan’s head. According to several barbers he has a perfect head.  Again, who knew? You should be careful around us because we have a lot of perfection going on!  Just as Rachel has Down syndrome, we all have things that make us different.

girls at kim's

What hit me was that how she is really different is in what she does.  She accompanies me to speak to classes and groups.  When she had just learned to read she would go with me to speak to educators and she would read one of her little “I am Sam” books to the group. It was often entertaining to see how astonished they were by her reading.  She started going to the Tennessee Capitol when she was in preschool and meeting legislators. Now, she heads off to Washington DC and she believes that she is best friends with Senator Roberts, Senator Moran and Congressman Kevin Yoder. She does seem to connect with them and their staffs and that pink house has helped.  She also thinks that she could call Bill Dance to go fishing with her and it’s no big deal. After all, she was on his show and has been fishing at his house. She told me this week that she wants to do workshops about Down syndrome when she gets older. I told her she already does that. She seems at ease in front of an audience speaking.  The majority of Americans cannot say the same.

So no Rachel is not just like most other 14-year-old girls. Rachel – thanks for being who you are perfectly created by the hands of God.

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Advocacy: Tonsils, Inclusion, Life!

Rachel is getting her tonsils out tomorrow. They called Monday to go over the intake list.  About five minutes into the interview, the nurse says “Did you say she has Down syndrome or she has been tested for it?” This did not inspire confidence. Especially when you consider that we had discussed her age and that she has Down syndrome earlier in the conversation. We had also discussed that they had her scheduled for 11 am and that could get pushed back. I called the doctor. We have an 8:40 am surgery time now. Advocacy crosses many lines.* Stay tuned.

Since we are busy with school leadership conferences and a last work shift and tonsillectomies, there is little time to blog so I’m cheating.

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I read this article that had been posted Amy Van Bergen, Executive Director of the Down Syndrome Association of Central Florida. I love it. I shared on Facebook and some groups but I wanted to share the link here too. Love to hear feedback from readers about your thoughts. I have a friend who thinks the lack of commitment to inclusion is a fiscal issue. I am not naive. I know money is an issue. But I believe at the core it is a philosophical issue. Regardless of your perspective, this is a good read. “Is ‘Inclusion’ Really the Answer For Children With Special Needs?” 

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Last, we attended the Down Syndrome Guild of Greater Kansas City family barbecue Saturday. I loved seeing some familiar faces and friends. What did I like best though?  Meeting families with little ones. So glad to connect to some of them. Some of their questions reminded me of this blog I shared a few years ago. Rachel was 14 when I wrote it. Now she is 16. I would still say the same things to those with babies or little ones. Find out what I would say 14 or 16 years later!

Hard to believe this precious baby is 16! Photo by Hal Jaffe.

Hard to believe this precious baby is 16! Photo by Hal Jaffe.

* I would like to say that we have the highest respect for doctors, nurses and healthcare providers. Overall, we have had very positive experiences.

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Two Suggestions for Church Inclusion

In my blogging, speaking and networking a hot topic is always “The Church” and inclusion.  Almost every time I do a speech or a workshop, questions arise. I am a person of deep faith. While I try not to hit people over the head with it in presentations and such, I also do not hide it. It is a huge part of our family, our journey and of my inner core. I am not a religion expert, but I believe that inclusive practices should be welcomed in any church. I am Christian and more specifically, I have almost always been a part of Baptist church. Therefore, organizationally I am most familiar with how Baptists operate. We as Baptists believe in local church governance so there is some difference from church to church. Whatever your denomination, religion or faith preference I believe we can share some ideas that will support a person with an intellectual disability being meaningfully included in your church experience.

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That said, many people wrongly assume that “The Church” welcomes those with disabilities with open arms. From what I have heard from families and my own observations, I do not believe this is accurate. I do think we are making headway. I also believe that many church leaders recognize the need to make progress in this area. So I do not want my blog to be a forum for throwing darts at anyone. Please do not misconstrue stories as an indictment of anyone or organized religion. Instead let’s allow this to be a platform for educating and where we might initiate conversation and generate ideas. Remember we call carry our own baggage. I am sharing from mine!

fuge rappers

Overall, we have had positive church experiences and Rachel has been included. I have done a bit of research to get input from those who have worked with us and Rachel through the years. I want to share a couple of ideas today from our experiences. More will follow. I also want to tell you that while it has been positive overall, I too have experienced wounds.

As a starting point, I want to encourage those of you who want your child included with typical peers in church (for us that is all Sunday school, all activities and worship) to try inclusion. Two immediate thoughts come to mind. One is to meet with the leadership. It depends on the age of your child but start with the minister or director for that age. I had a prenatal diagnosis and knew our preschool minister prior to Rachel’s birth. There was never any question but that she would go to the church nursery and do the same things as the other babies. Rachel was healthy so I didn’t have that component to deal with. Rachel went to the special activities for her age group and participated in Christmas programs, Easter programs, children’s choir and hand bells.  She played Baby Jesus in the Christmas program because she was such a sweet baby. She always had very patient adult workers and fully participated. Her smile lit up the stage, even when her voice was off-key, from an early age.

pdo christmas 02

Hand bells were one of my favorite things. They color coded them for the children so Rachel didn’t have to have any adaptation at all.  She had so much fun and has loved church choir her entire life.

church choir 05

At each stage and transition, I would meet with the leadership, paid and volunteer. I wanted them to know our expectations. I wanted them to know Rachel’s needs. I wanted everyone to be successful. I basically knew nothing about Down syndrome before Rachel. I have had a crash course on Down syndrome. I don’t think it is reasonable to always expect people to know what to do if we don’t tell them or help them.

Even though we never needed a special friend or buddy in her church activities, I’ve always appreciated that our ministers offered. Some children and teachers need the extra good hands guys for safety or for helping with activities. Talk with them openly about your desire for your child to be a part. This is not just for your child. It is for the other students and the adults as well. We learn from each other.

oksana rachel duck

Second tip is to educate. Offer to do part of a training to help teachers and helpers know how to work with your child. If they won’t or can’t allow you to do this, provide them with written materials, resources and videos or Internet links. Make sure to meet the adult volunteers who will be working closely with your child and give them information. For example, we would tell them that we expect Rachel to follow rules. She needs extra time to process instruction. Fine motor skills such as writing are not her strength. She is a good reader and will want to read out loud. I like to do some education of staff, teachers, etc, if at all possible. My next step would be to help you find peers who could be a buddy in the student events, students who would work to include her. You may need adults to help monitor in the beginning but before long, they students will do the work. One observation I have always had is that many of her teachers comment on the fact that Rachel can read better than some of her peers. I think this alone is a beautiful example of this church inclusion thing. It promotes this idea of high expectations.

gf beautiful choir

I strongly recommend peer presentations at church, too. When Rachel was younger we did one for her class every year. We did a little PowerPoint just like we would for school. “Just Like You – Down Syndrome” has provide us with an easy educational tool. When we are having a weekend discipleship retreat, I find out who Rachel’s leader will be and send them an email. I invite them to spend 13 minutes watching “Just Like You.” Most often, they do and it makes a huge difference.  JLY is specific to Down syndrome but it has great points (as does “Just Like You – Autism”) for working with kids of all kinds of abilities.

I guess I have more than two suggestions here but I want to leave you with this final thought.  Have courage. A long time ago I decided I would never allow my own fears to prevent Rachel from being a part of something. I know it’s a fine line but do the best you can to educate everyone who will be with your child.  Seek out a few positive peers/mentors to assist.  Don’t give up at the first wrong turn. It is hard. It is exhausting, but this picture is worth a million words. #Inclusionworks. It’s worth it for everyone.

BGE petracek party

NOTE: I know there are people who have health limitations and other limitations. I am not all-knowing. I am simply sharing from our experiences and philosophy. “For I am confident of this very thing. He who began a good work in you will be faithful to complete it.” Phil. 1:6.

We need open dialogue to address this multi-faceted challenges.

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