Miss Rachel Testifies

Inquiring minds wanted to know what we would do since the ABLE Act was now law.  Well, we will work to get the state ABLE Act passed! Today we headed to the Kansas State Capitol and testified in support of the Kansas ABLE Savings Plan. It was a real honor to have our Kansas bill introduced by Representative Erin Davis (R-Olathe) last week. group at KS ABLE testimony 0115

Congressman Yoder (R-KS) came to speak on behalf of the bill and reminded the Children and Senior’s Committee that this bill is the right thing to do and will make a difference for ordinary people. Rachel beamed when he mentioned her name. yoder testimony

I testified in my role as a National Down Syndrome Society (NDSS) Ambassador for Kansas and as Rachel’s mom. She was the guest of the day though. She only went rogue a few times. She answered the State Representative’s questions and she was gracious as they applauded her courage and work. One legislator told her she should be a Legislative Page and Rep. Davis already told her she would love to have her. That made mom a little teary eyed in the best sort of way. We still have work to do to get this passed in KS. Like many states our state has budget issues so we must rally the troops, contact our state legislators and get the job finished for all the Rachels in Kansas.

Text of her written and submitted testimony:

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“My name is Rachel Nicole Mast and I live in Olathe, Kansas. I am 15 years old and I am in the 9th grade at Olathe South High School. I am on Student Council. I made all A’s my first semester. My favorite classes are drama and science. I am rehearsing for Cinderella with Christian Youth Theater. It will be my 16th show. I love to sing and I am in student choir at Blue Valley Baptist Church. I love plays, acting, dancing, going to movies and hanging out with my friends.

I want to work at AMC Theaters. They told me I can when I am 16. I want to go to college at KU or at the University of Arkansas. That’s where my parents went. I want to be a teacher. What I really want is to grow up and get married and live in a pink house. I love Broadway shows so I would really like to live in New York City but I am not sure if my husband will want to do that. My mom and dad say we need to save money for me to be able to do these things.

My mom and I have been working on the ABLE Act for a long time. We go to Washington DC and visit Congressman Yoder, Senator Moran and Senator Roberts. They thought the ABLE Act was a good idea and sponsored it. The President signed it into law. The ABLE Act will help me to be able to go to college, have a job and live in my pink house.

I hope you will think the ABLE Act is a good idea too.

Thank you. Are there any questions?

Rachel Mast

Handing out her personal cards to the Children & Seniors Committee members.

Handing out her personal cards to the Children & Seniors Committee members.

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Remarkable People: Sara Wolff

I know some remarkable people. I have written in the past about my friend Sheila Siegal. She is the first person I always think of when I think of remarkable people. You probably don’t know her name.  She never aspired to be remarkable, but the she gave birth into the Down syndrome community to a remarkable girl named Lori. You can look up Lori’s story but Rachel would say Lori was “super-remarkable!” Lori was taken from us in her mid-twenties.  Born with Down syndrome she lived with pulmonary hypertension until her body gave out. She did more in that 25 years and touched more lives then and in her death than most people could ever hope. She lived life to its fullest. She was my friend, and she was Sheila and Bruce’s daughter. They empowered her to live and in her death they have been the picture of grace, dignity, respect, service, education and they have made Lori live on through their generosity and work in the Down syndrome and organ transplant communities. Sheila and her husband are remarkable.

Since I started blogging I’ve written about some other remarkable people. Today, I want to share about the remarkable Sara Wolff. I probably brought Sheila and Bruce into the mix because Sara Wolff reminds me so much of Lori. Not the way she looks. Not even her mannerisms but her conviction to speak for people with Down syndrome. I knew Lori on a day-to-day basis. I know Sara just from brief encounters in Washington DC and through social media. I treasure the short times I spend with her. She has a kind heart and a kind face. She works. She serves on the NDSS board. She works some at the NDSS office. She lost her mom a few years ago, but her mom had already realized the importance of the ABLE Act for her to be able to achieve her dreams. Like Sheila and Bruce, Sara has not focused on her grief, but on speaking on behalf of individuals with Down syndrome. And oh, what a difference she has made. Her own Senator Bob Casey (D- PA) was one of the co-sponsors and leaders of the ABLE Act in the Senate. She and Senator Casey became friends and she has been invited to town hall meetings and to his press conference to talk about the importance of the ABLE Act. You may have seen Sara’s petition through change.org.  In her testimony before the Senate Finance committee, she made the case why the ABLE Act was the right thing to do from a logical, heartfelt point of view of someone with Down syndrome. She is a role model for my daughter, Rachel. She is a role model for all of those with Down syndrome. She is a role model for those with disabilities. Sara Wolff is a role model for all of us.

Last night, Sara Wolff attended the State of the Union Address as Senator Casey’s guest. You may have heard that this is a bit of a tough ticket to get.

casey wolff

Senator Casey’s office posted pictures of Sara and the Senator doing the press circuit. Senator Casey also pointed out that he would be sitting with Congressman Ander Crenshaw (R-FL) and that they had worked together in bi-partisan fashion for the Sara’s and Rachel’s of the world. It was a pretty big deal as you can tell from Sara’s smile in the pictures.

Sara Wolff & sister Jennifer headed to the 2015 State of the Union Address.

Sara Wolff & sister Jennifer headed to the 2015 State of the Union Address.

Rachel knows Sara so I wanted Rachel to watch part of the State of the Union Address with me last night. I told her about Sara being there and explained what goes on. She wanted to know where Congressman Yoder and Senators Moran and Roberts were. Then she said in her “I can’t believe this” kind of way, “Where is Sara Wolff? Why are they not showing Sara Wolff?” I tried to explain and figured Rachel would say “I was shocked that they didn’t show her.” She had to take a report to social studies today on the SOTU so we printed off a couple of pieces about Sara Wolff being Senator Casey’s guest.

At the end of the night we didn’t see her, but it feels great to me just knowing that the remarkable Sara Wolff was there representing so many of us.  Thank you Sara!

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Realities of an Imaginary Friend

Today I want to recommend a book. I don’t know how I learned about his book. I must have seen it on some reading list. It caught my attention because as a child  I had two imaginary friends. I quickly became engulfed in this book. When I found it, I didn’t realize the story included a child who was labeled as “different.”  Yes, there are parents, many teachers and other adults. There is also an unexpected but needed emphasis on a paraprofessional. I had only a few chapters left so I took it to school pick up. I didn’t expect to sob at the end but I did just that. In the van waiting for Rachel and company, I sobbed.

The book is told from the viewpoint of the imaginary friend. In one spot he is telling why he believes Max his human is brave and this is what he says: “What I like best about Max is that he is brave. It’s not one thing. It’s everything. Max is not like any other person in the whole world. Kids make fun of him because he is different. His mom tries to change him into a different boy and his dad tries to treat him like he is someone else. Even his teachers treat him differently, and not always nicely. Even Mrs. Gosk*. She is perfect but she still treats Max differently. No one treats him like a regular boy, but everyone wants him to be regular instead of himself. With all that, Max still gets out of bed every morning and goes to school and the park and the bus stop and even the kitchen table.”


That’s enough to pull you in to “Memoirs of an Imaginary Friend” by Matthew Dicks.  If you are looking for an easy but thought-provoking read that may or may not cause you to reach for the Kleenex, this is a good read. This book will allow you to see the world through some new lenses and through a variety of lenses, too. If you are an educator or a related services professional, you may see yourself or some of your colleagues. If you don’t have a child with a disability in your life, you will get a realistic understanding of what parents of children with disabilities face – daily. I believe parents of persons with disabilities will be impressed with how the writer Matthew Dicks nails some feelings and emotions and brings to life some very real fears. Parents, no doubt you will relate to some of the emotions. Mostly, I think he captures the essence of a child who the world has labeled as different from the very uncomplicated perspective of an imaginary friend.

I think we could all learn a lot from imaginary friends.


*Mrs. Gosk is the grade level teacher in the book.

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Will Your Child Come Home from the Movie?

Two years ago today Ethan Saylor went to a movie. He went to see “Zero Dark Thirty.” Ethan didn’t make it home. Ethan died that night at the hands of local off-duty Sheriff’s deputies working as security officers.  Ethan was 26. Ethan had Down syndrome. Unless you are part of the Down syndrome community, you probably missed this story. Unlike some recent events, the national press really didn’t pick up this story. Led by Ethan’s sister, the primary outcry for justice has been the Down syndrome community. You can read a summary of Ethan’s Story here.  In a nutshell, Ethan wanted to see the movie a second time. He didn’t have the money. His support person was trying to diffuse the situation and even warned officials not to touch him as he would become agitated. He was taken to the ground and had a “medical emergency.” He was pronounced dead at the emergency room. The medical examiner ruled this a “homicide”, a grand jury did not indict.

I have had the extreme pleasure of meeting and becoming friends with Ethan’s mom Patti Saylor. Patti never planned to become the face of training police personnel. Patti Saylor has been a picture of courage, strength and dignity through this entire ordeal. She has managed to be kind even when the Sheriff’s brother wrote an editorial stating that perhaps she should have kept him home. He also stated that she had no idea how hard this had been on the off-duty deputies. Think about that statement for about a minute before you move on.

I asked Patti what message she would have me give. She said:The call to action at this time is to never forget what happened to Ethan! Keeping his story alive and in the minds of people local and everywhere. We will be introducing legislation in a few weeks calling for mandatory training for current law enforcement and establishment of the Ethan Saylor Self Advocacy Institute.

In spite of this appalling situation and some of what we see in the media, I believe that most law enforcement officials are good people. They are public servants who are underpaid and overworked. I HAVE to believe that what we are seeing in the media are the exceptions and not the rule. I also believe we have peaceful ways of protesting and hopefully making change but sometimes people don’t believe that and employ unfortunate methods to protest. I applaud Patti Saylor and her family because they have committed themselves to helping establish training for law enforcement officials. Nationwide it is my hope that we will see law enforcement officials, first responders, educators and other such individuals receive appropriate training. It will not solve all problems but it will help. I threw in educators because we in the disability community know that we are still working to rid our schools of outdated seclusion and restraint tactics that create abuse, humiliation and even the death of students in the public school.

So today I join many, many other people in praying for Patti and the Saylor family. Let us not forget Ethan. May we in this United States of America show the Saylor family and millions with disabilities that we do respect individuals with disabilities and implement appropriate training and instruction so there will never be another Ethan.

My Rachel loves to go to movies. She wants to go to movies with her friends – “without any parents.” As we discuss this option, I have to tell you I often think of Ethan. It is extremely difficult for me to imagine this happening to Rachel in our community. But Patti Saylor never imagined that her son would not come home from the movies either. #JusticeForEthan

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Don’t Cry Mom!

Sometimes, Rachel is a comedian and doesn’t even know it. She announced to me that she is starting the second semester of her freshman year. She then proceeded to tell me that next year she would be a 10th grader and then 11th and then the 12th. “Just seven semesters and I go to college mommy!” I said that was correct. She went on to remind me that if she doesn’t get a scholarship to KU, she will go to Arkansas. “I know you and daddy will be sad if I don’t go to Arkansas.” I told her that we did love the University of Arkansas but we wanted her to be happy and if she got a scholarship to KU, we would be happy for her to go there. Then, she said, “Don’t cry when I go to college mom. It will be okay.” I actually giggled and told her that I would probably cry when she went to college, but it would be okay.

Then, she started talking about turning 16.”I am almost 16 mommy. I can get my driver’s license.” All of her friends are talking about their driver’s test and driver’s license so of course she would be.  She reminded me that she wants a pink car. I don’t remember if it is a Jeep or what these days. I told her once she need to work for Mary Kay and earn a pink car. I told her my parents didn’t buy me a car when I turned 16. Her response, “Why not?” I just gave her a look on that one. One of my friends told her son with Down syndrome that the driver’s manual was online. She told him to study and when he could pass that, they would see about the license. He may surprise her. I think I’ll try that on Rachel. She may surprise me.

We are but a little over two years away from being a legal adult. Like everyone with an almost 16-year-old there is so much to think about and so much to do. Those who have gone before me have warned me about these days. The rites of passage that are assumed for many but may or may not be reality for Rachel.  The challenges for Rachel and for us with all of this.

As I ponder that baby Rachel is going to turn 16 this year, I am a bit of a melancholy mood. Not sad because I want her to grow up and achieve her dreams and get that pink house and pink car. Just thinking a lot. I’ll keep you posted.

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passEDtheABLEact – What’s Next?

Following the House and Senate’s resounding yes votes to pass the ABLE Act, President Obama signed The Stephen E. Beck ABLE Act into law on December 19, 2014. That was my early Christmas present!  On December 29, 2014 the Arkansas Razorbacks beat the Texas Longhorns 31-7. That was my early New Year’s gift. It has nothing to do with the ABLE Act but I do believe that the most wonderful time of the year is when college football starts. Proud of my Hogs.

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Back to life though. People I don’t know and people I barely know have been congratulating me on the passage of the ABLE Act. Honestly, I have been a little surprised by the fanfare. For me and those I do this disability journey with, it is a great big deal. Truly I had no idea that we would have such an enormous response to the passage of the bill. The media coverage has been awesome. Besides the obvious one reason the media response is to awesome is because people with Down syndrome, autism and other  disabilities are in center stage in a positive way. You cannot buy that press. I have been a bit embarrassed though by the attention paid to me. I have worked alongside the most incredible people to help get this passed. My part was so small and such an honor. In workshops I often say I do what I do for those who can’t, won’t or don’t. It is not my place to judge why they can’t, wont’ or don’t. Since I was a teenager Isaiah 6:8 has been a favorite of mine. “Then I heard the voice of the Lord saying, “Whom shall I send? And who will go for us?” And I said, “Here am I. Send me!” That’s what I have tried to do. I have said the ABLE Act was a labor of love and conviction.

Now, many people pose the question, “What now?” I wish I could sit down and ponder that a little longer but there is not time. I told our Congressman and Senator’s offices that they just thought they would get rid of me when the ABLE Act passed. I’ll have new projects immediately, and I do.

The day the ABLE Act passed my good friend Joe Meares posted this:

“What should “we” (the DS community) work on next?” I believe it’s employment! NOW that people w DS CAN work to their potential without losing a safety net, WE must make sure there ARE jobs, MEANINGFUL incentives for employers and educate employers that hiring people w disabilities is not a feel good exercise, but—smart business. (lowest absentee rate, longest tenure in entry-level employment, etc) EMPLOYMENT legislation dovetails perfectly w ABLE and—it’s where Steve Beck was ready to put his energy after ABLE. I can’t fill his shoes, but—I’m ready to rally our troops and beat some drums. Who wants to meet at my kitchen table and write our next successful chapter?

I suspect that is one of the logical next steps and I will gladly jump on that bandwagon. Just in case you are reading this and don’t know though, let me list some of the other issues we must address:

Meaningful Inclusion

  • In spite of the passage of IDEA in 1975, across the country families still struggle to get students with disabilities included in school classrooms, extracurricular activities and socially. If you don’t believe me, check my Facebook groups, my email or any workshop I do.
  • I used the broad stroke of meaningful inclusion because often individuals with disabilities are relegated to separate sports, recreation and arts programs with little to no effort to include them.
  • Again the broad stroke of meaningful inclusion because based on what I hear, The Church is a little behind on this inclusion thing too.

Seclusion and Restraint

  • Stronger laws to protect students with disabilities or really any students from the use of seclusion and restraint. Have you heard the stories of taking canes from children who are blind as punishment and duct taping children to wheel chairs? All real.
  • Training of law enforcement and First Responders in how to work with those with disabilities. You have read about Michael Brown and Eric Garner but you may have missed the story of Ethan Saylor, an adult man with Down syndrome who was killed by off-duty police officers in a Maryland movie theater. It didn’t get much national press attention.

Research funding -Individuals with Down syndrome may have some of the keys to treatments, even cures for Alzheimer’s and cancer yet we are at the bottom of the percentage pie for NIH Funding. Thank you Senator Jerry Moran for working to right this.

Post-Secondary Programs for Students with Intellectual Disabilities – There are programs around the country but not nearly enough and very little financial support for students to participate.

Job Training and Transportation are two big issues.

I could go on but I think you get the idea. There is much to do. For this momma, a girl named Rachel graduates from high school in seven (7) semesters. She talks about colleges and pink houses and living in New York City. In addition to the big picture, I have to dedicate some time to her picture.  Part time jobs, job training, volunteer opportunities, realistic post-secondary programs, finding the money to do it all – those are just a few things that come to mind.

I’m thankful for my 2014 gifts. For me it started with a girl named Rachel and shortly thereafter an eternal friend named Ben. Along the path we’ve added a lot of Ryan’s, Bella’s, Halie’s, Emily’s, Katie’s, and on and on and on. So here’s to all of them and the work that still needs done so they can live real lives.


In 2015, “Here am I. Send me.”


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Top 5 Most Read posts for 2014

On this next to last day of the year I decided to steal this idea from my good friend Mark Leach and my hubs, Jonathan. I look at my analytics on a regular basis and some of my blogs are a response to what I see readers wanting more of and some are a response to comments asking for more on a certain subject. The subject is pretty much always inclusion in some way, shape or form. I hope that something we have shared from our journey makes a difference for some of you!  A favorite song of mine says “may all who come behind us find us faithful.” That is not only my wish, but my prayer.

Countdown starting with number 5, Inclusion Done Right: Church Camp. Sadly, I get so many questions and comments about church inclusion. It has caused me to spend some time with my good friends down in Southeast New Mexico discussing how and what we could do to help families and churches with this. Would you be interested in a Facebook group specifically for Inclusive Church/Worship? Let me know.

4. Rachel Prayers and Homecoming. This girl has a sweet little spirit to go with her sassy self in training. Check this out to see for yourself. Her first high school homecoming.

3.  As I am writing I noticed that the 3, 4 and 5 all involve religion in some way. Of course they involve inclusion.  Bat Mitzvah – Just Like You Our participation in a friends Bat Mitzvah was such an honor and an incredible blessing for our family. Learned more about the Jewish faith which always fascinates me. Had the opportunity to be inspired by teenagers and adults alike as they reached out to Rachel, who they did not know, and made her feel included in their celebration! Thank you Kimberly and Melina!

2. Modifications: Ideas from a Mom Not much more you can say about this. Just sharing some things that have worked for us along this journey. On Facebook and at conferences there is never a lack of questions on how to make the curriculum work. Rachel has had the benefit of some outstanding teachers. Happy to share some of what has worked and what hasn’t.

1. Hands down with almost triple to reads of any other blog post, Real Friends.

That says a lot about the face of life for people with disabilities, too. The law gets us in the classroom but we need people to follow the examples in blogs three through five and include individuals with disabilities in meaningful friendships, real friendships. I know this is a struggle for those with and without disabilities. I think this blog lends some ideas to both.

Finally, I cheated. Until We Meet Again Susan Mom, 

is a tribute to my mother in law who passed away unexpectedly early in the year, actually came in as one of my top five posts for the year.  I know that most people who read my blog are reading about the adventures of Rachel her friend and family in the mainstream. I would be honored if you wanted to take a peak at this one, too.

Tomorrow, I will be posting a final blog for the year to wrap it all up. Thanks for reading. Love sharing life and learning from each other. Please feel share to comment and/or share my posts with anyone else who might benefit!  I even have a group of teachers following our journey!

i love my life tfs collage

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Christmas Wish Granted, One Year Later!

Merry Christmas 2014!  Last year my Christmas day blog post read, “Merry Christmas!  I have an extensive list of Grown Up Christmas wishes. One is that the ABLE Act of 2013 will make it to the floor and get passed!” The House and the Senate passed the Stephen E. Beck Achieving a Better Life Experience Act of 2014 in the final moments of the 113th Congress. The President signed it into law on December 19th, 2014. Wish granted one year later!

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What a year!  Below you will see our annual Christmas Card and a copy of our Annual Christmas Letter – sent just before the President signed the ABLE Act into the law of the land. I hope you will read at least my final paragraph.  Merry Christmas to all of you and may you have a blessed 2015!


Jonathan and Jawanda: A Modern Day Tragedy/Comedy Chapter 25

Greetings Friends!

For those of you who know me at all, you realize that this is the latest I have ever sent out Christmas cards. I have a good reason: #passtheABLEAct. More about that later. Our year ends on a high note but it has been a bit of an emotional roller coaster, rich with blessings and dotted with some challenges. The challenges began in Feb. when we lost Jonathan’s mom Susan. It was quite sudden and unexpected. We lost Grandma Lucy in April at a young 101. She would have turned 102 on June 14. She lived a tremendous life and we feel blessed to have had her for so long. We also lost our friend Charley in the spring. Not related by blood but playing the role of adopted grandparents, Charley and his wife Sharon lived two doors down in Bartlett. Rachel, Uncle Charley & Aunt Sharon have a mutual adoration club for sure. These losses have been especially hard for Rachel but many have told us that through all of this they believe Rachel has a gift for comforting others.

Now you must be thinking, “What a way to start a Christmas letter?” Well, that’s been our life! But our blessings and adventures far outweighed our challenges this year. Rachel turned 15 and we celebrated by taking a couple of her friends to Memphis. We had a great time and were spoiled by our hosts Gina and Jim Wiertelak. A couple of other Rachel highlights included being a part of her friend Melina’s Bat Mitzvah in Chicago. Melina chose Down syndrome as her mitzvah project and chose to show Just Like You –Down Syndrome as part of the festivities. Rachel was an honored guest and Jonathan and I got to tag along. None of us had ever been to a Bat Mitzvah. It was a lovely experience and we were impressed with Melina and her friends. Another friend hosted a dance-a-thon in honor of Rachel to raise money for an accessible arts program in New York City. Rachel was selected by the Victory Project, an outreach of Sporting KC, to be their honoree at a Sporting KC game in May. What a great experience and a honor to be nominated by our friends over at Variety Children’s Charities of Kansas City. Rachel was in her 15th show, CYT’s “Shrek the Musical” back in February and was just cast in CYT’s “Cinderella Enchanted” (Feb. 12 – 15.) The stage is still her true love. She started high school at Olathe South in August. Still hard for us to believe that Baby Rachel started high school. She loves high school and has been very involved serving as the 9th grade volleyball manager and on Student Council. She won the dance off the first day of school, too!

Jonathan loves his work at Sedgwick as the Director, Social Media. He travels a fair amount and has some interesting experiences of course. He turned 50 on February 14 and ran another 50 mile ultra-marathon in the spring. I continue to blog and be involved in Down syndrome advocacy primarily through the National Down Syndrome Society (NDSS) Ambassador’s program. Rachel and I have enjoyed speaking at a few conferences this year. It is such an honor to share about our experiences and learn from others on this journey. Our family is happy that the Razorback football and basketball teams seem to be on the upswing. We were able to go to a UA baseball game last spring and a friend of Rachel’s from Olathe South will be attending on a baseball scholarship next fall. WPS! Jonathan and I celebrated our 25th anniversary late by going on a cruise to Key West and Cozymel. It was nice to get away and we appreciate that my mom could come and manage The Rachel for a few days.

Our most exciting news happened tonight. #passedtheABLEact! We have been working to pass the ABLE Act (The Stephen E. Beck Achieving a Better Life Experience Act) for 8 years. Many trips, conversations, emails, phone calls, office visits later, I am proud to say the ABLE Act was passed by the House and Senate and will be signed into law by the President in just a few days. I had the amazing honor and privilege of being present for the House vote. So proud to have our own Congressman and Senators as sponsors of this important legislation that will allow individuals with disabilities to save in in 529 type accounts without worrying about losing certain government supports. It is landmark legislation that will help individuals like Rachel. One of my favorite Bible verses is Ephesians 3:20 “Now to Him who is able to do immeasurably more than I ask or ever imagined be the glory forever.” A few months back I claimed that verse and started praying it for the ABLE Act. As I told Congressman Yoder when I first met him, “You should support it because it is the right thing to do.” He has become a champion for us. All to say that I hope during this Christmas season you are counting on Him to be ABLE to do something extraordinary and life changing. He is ABLE.

Merry Christmas and a blessed 2015 to you and yours.
Jonathan, Jawanda and Rachel Mast

Originated: December 16, 2015

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High School 1st Semester

Decided to shift gears from ABLE to inclusion. Wanted to name this High School 1st Semester in the Books but not quite. Rachel had the flu and missed all of her finals. Her teachers were great and for the most part froze her grades. She had worked on projects for some of the classes already so we went ahead and submitted those. Her English teacher says she is so close to an A in her class. If she feels like it, maybe she could finish that project?  I think she’ll feel like it.  So almost in the books would be more accurate.

Rachel has had a good 1st semester of high school. It has not been without bumps. She doesn’t know about most of those bumps. Most are behind the scenes things that the adults deal with. An IEP strategy I share with lots of families is to focus on the positive. If anyone starts down the path of everything your child can’t do, re-focus their attention on what your child can do. “Yes, we know what our child can’t do. Let’s talk about what he/she can do and what supports are needed to make him/her successful.”  Today, I’m going to focus on what has worked.

I’ve heard over and over again that high school is different – especially for students with IEP’s who want inclusion. I admit to wondering if people think IEP’s are a list of suggestions. Rachel would say high school has been super amazing. If you follow my blog, you know that she was the 9th grade volleyball manager and loved that role. This role gave Rachel a feeling of belonging and value.  She also serves on student council. She’s a member at large. The senior leadership on Student Council has been awesome. They try to be sure that I know what’s going on. One of the things I’ve loved is that some of these students and her theatre friends re-tweet her tweets and my tweets. Most notably – they re-tweet about the ABLE Act. I cannot tell you how much I love this and how inspired I am by this! Kudos to so many students who have been there for Rachel and us. Her church friend Allie, a senior, who has lunch with her many days. Her peer mentor Andrea and Savanna’s sister Sierra just to name two others who have been critical to her successful transition.

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A true key to success in this first semester has been Rachel’s teaching team though.  They have been awesome. They have worked with us. Some seem surprised that this is not always true. We now have a case manager who does what he is supposed to do and responds promptly to communication. When I met him I told him that the number one predictor of being good case manager was responding in a timely fashion to my communication. He too has exceeded expectations. He also has high expectations. Overall Rachel’s teachers have a good grasp on what kind of modifications she needs. Our case manager works with them to tweak assignments and tests. On a couple of tests, I’ve mentioned that she might do better if tested in a different way. Sometimes we’ve changed format and other times her case manager has mentioned that he would like to let her try it a certain way. Honestly, what I’ve thought is “there is a reason we avoid certain formats. We didn’t just decide she preferred a different method.” Doubtingly I’ve said “okay.” There is a bit of truth to both sides of this quandary. She has been challenged and managed to do quite well though. One teacher even communicated that he was quite impressed with what Rachel had done. Me too!

Rachel loves school an aside from math seems to enjoy all of her classes. She will quickly tell you that “math is not my favorite.” One class in particular is really her favorite though: drama. Surprise! High school drama class is not like her CYT classes. They learn history, techniques, write papers and plays and do monologues. Rachel has a great memory for every movie she has ever seen. However, memorizing word for word and then reciting it is a bit of a challenge. She had to memorize two pieces for her drama class this year. Her teacher told me all semester not to worry about Rachel. “She is one of my best students.”  We want Rachel to do her best and we don’t want her to embarrass herself if it is something we could help with. On her first monologue, I was skeptical but she did it. The second monologue was a Shakespeare piece and she chose something from “The Tempest.” She worked very hard and did her best. She didn’t quite get it all memorized but she pushed herself beyond what she had done before. She was proud. Her teacher was proud and her parents were proud.  She exceeded expectations.

For drama class she had a two-part final and the students were allowed to work on it at home. Rachel did the written portion as a PowerPoint Presentation. Note: Often when Rachel has writing assignments, she does a PPT. Her middle school theatre teacher came up with the idea. It is a life skill Rachel will use more than writing an essay. She already gives presentations. She needs to be able to put them together. Great out of the box thinking by the teacher. Her current drama teacher and I exchanged some emails about her project. Here are a couple of exerts from the email and he did give me permission to share via my blog:

“The students are working on their finals in class. Rachel came up to me and asked for clarification. She was interested in a doing a scene. She didn’t have a partner, but I told her that it was ok. Honestly, she is one of the higher achieving students in the class. She listens, participates, has fabulous energy, and asks excellent questions. She is really a role model for other students. You should be so proud. She really is amazing. So, I told Rachel that she might be better off without a partner. While she could inspire some students in the class, I didn’t want her to be let down by other students not living up to Rachel’s work ethic. “Did you say I can write a play?” I said yes and Rachel began to tell me her plan. It was completely thought out and it was very reasonable. …..

So … I think she has an idea and I think we should stick with it. …..

Honestly, the objective is for the students to find a way to explore a part of theatre that interests them. Rachel seemed to know what this was for her. I think I would just have her expand it with you. ….

Your daughter is amazing. Thank you for sharing her with us.”

Yep, I think we got a good teaching team. Inclusion is work and inclusion does work. First semester of high school, almost in the books.

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White House, Pink House, ABLE!

#passEDtheABLEAct became my new hashtag yesterday. Tuesday night the United States Senate passed the ABLE Act as part of the tax extenders package.

able senate vote

Shortly thereafter, they went home and many bills died. Next stop for the ABLE Act is The White House. Seems perfectly appropriate to me that Rachel’s Pink House Dream has to stop at the White House first. We hope we get invited to the White House for this historical signing. Rachel might decide that The White House is more desirable than a pink house?

Tuesday night, I just wanted to sit and stare at the television screen. I wanted to take a few minutes just to think about all the people who had made this happen and all the people, yes including Rachel, whose lives would be changed in positive ways because of this legislation.  I really can’t describe what I felt in those moments. Eight years of advocacy. My Facebook and Twitter feeds went crazy. Fellow advocates reached out to each other. A few tears fell.  @rachelspinkhous feed was also in a frenzy. She had tweets from Senator Roberts,

roberts tweet

and Congressman Yoder,

yoder tweet

Rachel has been home sick with the flu this week. She gave me smiles when I told her the ABLE Act had passed and she read her tweets.  This was not quite how I had envisioned celebrating the passage of the ABLE Act!

While I was caring for her, I missed a call from Senator Moran. Senator Moran wanted to be sure we knew the ABLE Act had passed the Senate. He thanked us for our friendship and for bringing this issue to his attention. Part of his message said, “Thank you for introducing me to Rachel. I really have enjoyed getting to know her and your family and appreciate the opportunity to make a difference in the lives of your family and a lot of other families across the country and in particular in Kansas.” He closed his message by saying, “When you do work trying to change things, it may take a long time but you were successful and I am appreciative of your efforts.”

I played it for her and got that million dollar smile and she whispered “I get my pink house now, momma.”

moran fun 2

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