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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One Person CAN Make a Difference

We live in a cynical world. There is little confidence in Congress to get anything done. People don’t believe that their one voice makes a difference, but Rachel and I are both proof that it does. Consider what my own Congressman Kevin Yoder (R-KS) said following the vote to pass the ABLE Act:

This bill has been introduced every year for the last eight years. Year after year families and advocates met with their representatives to explain the importance of this legislation and to advocate its passage. In 2011, as a new member of Congress, I met with Rachel Mast and her family to discuss her encouragement of my cosponsorship and support. Rachel, now a student at Olathe South High School quickly became a good friend, and her continuous advocacy of the ABLE Act, as well as other advocates across the country, is why it has passed today.

Sometimes we all can become cynical about the legislative process and the ability for real people to be heard in the halls of Congress. On a bipartisan vote today, we ensured that Rachel’s voice and millions of other families’ voices were heard.”

During this season that we celebrate the birth of the One and considering the events of the past few days, I thought it appropriate to address this in my blog.

I could write about my own advocacy story today. I could write about some of the amazing people I met who have learned to advocate because they now have a child with Down syndrome. Today, I just want to honor the memory of one amazing person. I hope it will inspire you to do your part whatever that part is and to realize that one person can make a difference.

I don’t remember exactly when I met Steve Beck. I met him before we started working on the ABLE Act back in 2006. His daughter Natalie is the same age as Rachel. We had quite a few discussions about inclusion and what was working or not working. My most vivid memories involve work on the ABLE Act though. Sitting around a kitchen table, a group came up with this idea that is now known as the ABLE Act. Steve is the one who championed it and stayed with it for eight years. He worked the hill and not just his own legislators. He joined us on a visit to our Senator Roberts office. Senator Roberts is on the Senate finance committee, and Steve wanted to help answer any questions that might secure his support. Eventually Senator Roberts signed on as an ABLE co-sponsor and has become a tremendous supporter. Steve made a lot of those visits.

I always loved hearing Steve talk about his family. His eyes brightened when he talked about either of his daughters or his wife.

able beck family

The eyes are one of the ways we learn about the character of a person.  His twinkled when he spoke of his family. His deep love and devotion was vividly communicated in that twinkle. Steve’s devotion was not just to his own daughter though. He worked on behalf of his local organization. He served on the National Down  Syndrome Society (NDSS) Board of Directors and had just been elected as the Vice President. He had chaired the Governmental Affairs arm of the board. He worked tirelessly on the ABLE Act for his own daughter, but he worked tirelessly on the ABLE Act because he believed it to be the right thing to do for all people with Down syndrome and disabilities. As I say, it was a labor of love and conviction.

On Wednesday, December 3 the ABLE Act passed the House of Representatives by an overwhelming 404-17 margin. Steve sat behind me in the gallery. I listened to him counting as it hit 218 which was the majority. He said it took 90 seconds. Like many of us he had tears of joy! We all celebrated that night.  It was appropriate his family was there to celebrate because they made sacrifices for him to champion this act, too.

Monday morning I got the call. I know those calls because I’ve had too many of them in my lifetime. I knew something terrible had happened because I could hear it in the voice of my friend who had called to let me know that we had lost Steve. Suddenly, unexpectedly Steve was gone. Still seems a little surreal that he is gone. As the Senate prepares to vote (time/date still pending), we all call and text one another with our cries of sadness, grief, disbelief and concern for Steve’s lovely family. We all agree that we just need the Senate to go ahead and vote and send the bill to the President to sign into law so we can be sure that Steve’s valiant and selfless efforts are rewarded.

Earlier this week, different Congressional Champions paid tribute to Steve Beck and his efforts to champion the ABLE Act. To honor Steve’s memory and as a tribute to his hard work, Rep. Ander Crenshaw (R-Fl) who introduced this legislation filed  to change the name of the ABLE Act to The Stephen Beck, Jr. Achieving a Better Life Experience Act of 2014. I would say that is fitting. We in the Down syndrome community will call it the Beck Bill. Our friend Joe had been calling it that for years. I love this picture of the two of them from the night the bill was passed.

able celebration beck and joe

Can one person make a difference? Steve never liked to be the focus. He always deferred to and thanked the many people who worked hard on the ABLE Act. It is my hope and my prayer that his family and dear friends will treasure the many beautiful memories from great times with Steve. People who will never know him will benefit from the tireless work he did to create a more level playing field for individuals with Down syndrome.  Rest in peace my friend Steve. You are proof that one person can make a difference.

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Rachel Prayers: Senators Moran and Roberts

Some say Rachel is what we Baptists call a “prayer warrior.” If she says she will pray for you, she does! Her prayers are usually very simple. She is usually thanking God for someone or something. If she loves you and knows you are hurting or sad, she will pray that you are happy. If you have lost someone you love, she will pray and say they are always in your heart. She often prays that her daddy will have fun at work. She prays for herself, her dolls, her family, her auditions, her teachers, friends, church staff members and more. Most often she prays by individual name so some prayers last awhile. It is very sweet and her attitude is contagious.

Without our asking she has been praying for the ABLE Act. She has prayed it through safe passage in the House. She has prayed for her friend Congressman Yoder and his wife and “little baby.” Rachel prays with great confidence. Since the ABLE Act passed the House last week, she has been praying for the ABLE Act to pass in the Senate. Friday she was quite thankful that I had made it home from Washington DC. On the way to school, Rachel usually prays. We started doing this in preschool and we prayed for each classmate by name. That was our method for learning classmate names. Friday morning she had rather lengthy list of people and things to pray for and be thankful for. Then she said, “God please have the Senate pass the ABLE Act.  I know you will help Senator Moran and Senator Roberts get the ABLE Act passed in the Senate for me next week.”

moran fun sen roberts pledge the rub14

So Senators Moran and Roberts, no pressure. You know what to do: #passtheABLEAct, in the Senate, this week!

able passes star photo gallery 3 thumbs up. jpg


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#passtheABLEAct – A Few of My Favorite Moments

Rachel’s latest word of choice is “super.” Goes well with excited and amazing and ABLE Act! Yesterday in an interview with Fox 4 Kansas City, she said that she was “super excited”  and “super happy” about the ABLE Act passing. Even super excited, super amazing, super happy, super awesome, super honored, and super humbled would be just a few words I could use to describe my week. I cannot even begin to describe the elation I felt all week.  I had the opportunity to visit in all of my legislative offices. I had great conversations and must tell you that I felt so welcomed and appreciate the encouragement the office staffs extended to me. The ABLE Act has been eight years in the making, but more than one staffer told me that we should feel really proud because most bills don’t make it this far.  To have the honor and great privilege of being in the House gallery for the vote and to know that I was representing the hopes and dreams and hard work of hundreds of thousands of people – let’s just say it was a bit overwhelming.

A few of my favorite moments from the week.

  • Meeting and re-connecting with an intimate group of NDSS Ambassadors who have all worked tirelessly through different venues utilizing their talents to help get the ABLE Act passed.
  • Of those ambassadors, realizing that Rachel is now the Carrie, Fiona and Karen of someone’s world.
  • To visit Rep. Lynn Jenkins (R-KS) and have her hug me and say “I am glad you are here. I look forward to seeing you in the Gallery tomorrow.” She is not my representative but she does represent the great state of KS and as a member of the Ways and Means committee has been helpful in knocking out the final details that led to safe passage.
  • able jenkins
  • To see the twinkle and sparkle in the eyes of mom’s and dad’s of young kids with Down syndrome.
  • able macy  & mom
  • To meet sweet Macy and Brianna’s momma’s.
  • To see fellow Ambassador Kelly’s facial expressions as she talked about her Congressman & House Majority Leader Kevin McCarthy (R-CA) and to see the faces of the parents who visited him when they opened and shared their framed pictures with and from the House Majority Leader! He played basketball with the kids!
  • able mccarthy bballlable group w mccarthy
  • Sweet Brianna coming into the House gallery and clearly saying “Hello Jawanda!” Many people cannot say my name, and we were in the stiff and quiet gallery where they do not have much of a sense of humor.
  • To have the Johnson County legislative group including my new friend State Rep. Erin Davis (R) come in and sit beside me as we were watching the proceedings.
  • To have my own Congressman Kevin Yoder (R-KS) mention Rachel on the House floor in his remarks about the ABLE Act and then preside over most of the session that afternoon. Rep. Pete Sessions (R-TX) and dad of a son with Down syndrome was able to preside over the actual vote.
  • Watching Rep. Julia Brownlee (D-CA) take sweet Brianna on the House floor and let her cast the Congresswoman’s yah vote.
  • Listening to Steve Beck who has been the lead NDSS board member to champion the ABLE Act for eight years as he counted outloud 218 votes. That’s where you have to get to pass it. We all cheered.
  • Watching Sara Weir and Sara Wolff with arms around each other as we watched the vote tally go up, up, up to 404 yahs.
  • able wolff egan weir
  • Sitting beside fellow ambassadors Brad and Joe who did a big cheer when Rep. Sessions announced 404 yahs and 17 nays. We all followed suit. The ABLE Act passes.
  • Toasts in the Rules Committee private office with Rep. Ander Crenshaw (R-FL) who introduced the ABLE Act and Rep. Sessions (R-TX) and Rep. Chris Van Hollen (D-MD). It was touching to hear each of them talk about the ABLE Act, thank us and prove that Congress can cross party lines and do the right thing. able leaders at toast
  • My own Congressman Kevin Yoder’s Facebook posts. One with the picture of the official final vote tallly.
  • yoder able official tally
  • The other a picture with Rachel with some commentary including this: “Sometimes we all can become cynical about the legislative process and the ability for real people to be heard in the halls of Congress. On a bipartisan vote today, we ensured that Rachel’s voice and millions of other families’ voices were heard.”                                       yoder post able post
  • Joining about 100 Down syndrome advocates and self-advocates in the gallery for the experience and shedding some happy tears!able group toast. jpg

Besides the ABLE Act passing the House with overwhelming support, my very favorite moment on the Hill was when we were scolded for cheering when the bill passed. Rep. Sessions looked up at us and smiled. Apparently cheering for a bill that has taken eight years to pass is not acceptable!  We didn’t care!

Now Senate, you know what to do. #PasstheABLEAct and continue to show the American people that you can play together in the sandbox and to the right thing!


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A Message from Rachel

A rare Sunday blog with a message from Rachel.

Tomorrow morning I’m headed to Capitol Hill. I’m honored to be part of the National Down Syndrome Society (NDSS) advocate entourage heading to DC for the House Vote on the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313.) I’m excited. I’m nervous. I’m happy and teary all at the same time. I’m disappointed that Rachel won’t be there. Rachel and her pink house have become quite a symbol and they have quite a following. She needs to be in school though. She needs to be in school doing what 15-year-old girls do. That’s part of the reason I have worked so hard for almost eight years for this legislation. This legislation will be the first major piece of legislation affecting Americans with disabilities in nearly 25 years. Certainly, Rachel is central to my motivation but I have always tried to work on behalf of all individuals with Down syndrome. When I left my job as the ED of the Down Syndrome Association of the Mid-South, I sent a message to our families saying that it had been my great honor and privilege to work on their behalf. This week, it is again my honor and great privilege to represent families, families who need the ABLE Act to pass. We will see history in the making and we will see Rachel and so many others afforded the opportunity to be more like everyone else. If all goes well, this week the playing field will be a little more level and people with disabilities will be able to save for their dreams – just like everyone else. So I guess it’s appropriate for Rachel to be in school this week with her typical friends. About 40 years ago some families sacrificed much so we would have IDEA and she could live that dream. I guess this week is our opportunity to pay it forward.


NOTE: Thanks to the leadership of the National Down Syndrome Society, Senators Casey (D-PA) and Burr (R-NC), Congressman Crenshaw (R-F) and Congresswoman McMorris Rodgers (R-WA) and to my own Congressman Kevin Yoder (R-KS) and Senators Jerry Moran (R-KS) and Roberts (R-KS) for their support of Rachel and the ABLE Act.

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Thankful for Pink Houses & So Much More!

Happy Thanksgiving 2014! This is a reprint from last Thanksgiving. As you read you will think, are you sure? Yep -still waiting on the ABLE Act to pass. We’ve made progress though. House Majority Leader Kevin McCarthy (R-CA) has assured us it will be voted on in the House next week. Prayers that it will then pass the Senate before they adjourn the following week. Anxiously awaiting that House vote date for next week.

On behalf of Rachel and many others, I want to thank our own Congressman Kevin Yoder (R-KS), Senator Jerry Moran (R-KS) and Senator Pat Roberts (R-KS) for supporting Rachel. They heard us and responded. Rachel considers them friends and we do too!  I would then like to thank Senator Bob Casey (D-PA), Senator Richard Burr (R-NC), Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA) for being champions of the ABLE Act and people with Down syndrome. Rachel’s Pink House* is within reach.

Little Pink Houses Make Us Able To Give Thanks (Reprinted from 11-27-13)

I must admit that these past few days I have struggled with some things that have caused me not to have an attitude of gratitude. Without going into those issues, there are a few other issues that could cause me to really get in a funk. For example, I could be very irritable that the ABLE Act of 2013 has more bipartisan support than any bill on the Hill and it is STILL not going to the floor.  Or maybe my attitude could be spoiled because we’ve been trying to get this bill, a fair bill that is fiscally responsible and the right thing to do, to the floor for a vote for too many years.  I could also be in a funk because friends I’ve never met on Facebook are having to file lawsuits to get their children in general education classrooms.  IDEA was passed in 1975 folks.  I could be in a funk because Rachel wants to live in a pink house.  Period. Maybe the funk is induced because she might want to be a Kansas Jayhawk instead of an Arkansas Razorback. The latter actually brings more disappointment to my dear husband Jonathan than me.

DayWithRachel-3web. jpg

I believe happiness is a choice though. In my book there aren’t many character traits more desirable than being grateful and giving thanks. I just think it is part of being a good human being and realizing how blessed we are. So today I’m choosing to be thankful. I am thankful that in spite of all of our struggles, we live in the greatest country in the world. I’m thankful for the freedom of speech and the right to vote that allows me to contact media and legislators and plead my/our case. I’m proud that I have the freedom to write a blog and to responsibly say whatever I want to. I thankful that my daughter lives today and not 50 years ago. Today, there is a law that says she has the right to a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). While in may not always be easy and we may always be pushing for more rights, at least we have a law behind us that gives her the opportunity to be in the public school. Fifty years ago that wasn’t true.  I am thankful for those parents and self advocates who sacrificed so that Rachel has the rights and opportunities she has today.

web balloon smile

I am thankful that Rachel can dream about pink houses and that we can dream with her about going to college. I am thankful that we have the ability and the right to go to our Congressional leaders and say “Rachel wants to live in a pink house. Rachel wants to be a Kansas Jayhawk or Fighting Pickle of NC School of the Arts. We need your help to get there.” I frequently exercise my rights by contacting political offices.  It is a right and a privilege that many on planet earth are not afforded. Are you thankful for that right, responsibility and privilege and do you let your voice be heard?

Do you truly understand that freedom is not free?  This Thanksgiving I am thankful for the men and women past, present and future and their families who have sacrificed so that I do have these rights, who have sacrificed so that Rachel can dream, who have sacrificed so that you can exercise your freedom of speech even when it differs from mine.

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Pity party gone. I am thankful for dreams of pink houses that remind me that I am truly blessed and truly ABLE to be thankful for all that I have.

Small group activity at church - thanks poster

Small group activity at church – thanks poster

Pass the turkey and #PasstheABLEAct, please.

Happy Thanksgiving.

* Background: 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.

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Thankful for Great Role Models

I have blogged about the value and really the gift of good mentors in Rachel’s life.  As I prepare to cook some Thanksgiving favorites, I am reminded of one of the great role models in my own life. My seasoned readers know that I grew up in rural Arkansas. I grew up in Joy, Arkansas in the heart of White County which is located about an hour northeast of Little Rock. I usually say I am from Rose Bud because that is the school I graduated from. Then, I tell people that I am actually from Joy, a suburb of metropolitan Rose But, but we did not have a post office or a school. Trust me when I say living in Johnson County, KS is pretty different from growing up in Joy, Arkansas especially 35+ years ago. But then and now mentors and role models are essential.

The person I most often think of as my own role model is my 4-H leader. The 4-H program was my ticket to travel and to learning how to do so much of what I do now. I learned how to give speeches in 4-H. I learned how to run meetings in 4-H. I learned how to run events and ask anyone for anything.  They might say no but they might say yes. I had the opportunity to visit college campuses, meet elected officials locally and on the state and national levels. I had the opportunity to call the Hogs on the United States Capitol steps and get my picture made with the Arkansas’ great Congressman John Paul Hammerschmidt. That’s where I learned about grassroots advocacy. I have truly needed those skills especially these past eight years of trying to get the ABLE Act passed!  I learned to tell my story and the story of others to make change.

My own 4-H leaders were Wayne and Mae Ann. They moved to our community from another part of Arkansas and farmed. They didn’t have a child our age. Their only child, a daughter, had passed away suddenly. My sister had the idea of asking them to be our 4-H leaders. No one thought they would say yes. But they did and they invested in us. The rest of the story is history. They had a son during our 4-H years and we loaded him up and took him to all our 4-H activities and events. My fundraising skills can be directly traced to them. We had pie suppers, cleaned cemeteries, unloaded grain, and hosted the Mr. & Miss Joy contest to raise money. We also did adopt-a-grandparent projects and cleaned roadside ditches. We worked hard and Mae Ann and Wayne made sure our hard work was often rewarded with fun trips to Six Flags or Silver Dollar City. Fun times.

I was and still am very close to Mae Ann and Wayne. They’ve been at all the important events in my life. They were some of the first people called when my baby brother died. They were there when I got married and when Rachel was born. They love Rachel and she adores them even though she rarely sees them.

mae ann &N rachel 2014

We do not get to see each other much and haven’t since I left there some 35 years ago but that has never changed our love for each other. And their investment in me doesn’t stop there.

So on this day before Thanksgiving 2014 I am beyond grateful for God’s provision of these people in my world. My life is better because of them. I like to think that a lot of lives are better because of them, and that I have somehow paid it forward. Today, I am paying it forward by sharing one of my favorite recipes Mae Ann gave me when I was in high school. It is her Broccoli Casserole Recipe that has been our family favorite and a favorite of many of my friends since she gave it to me. I’m making it for our Thanksgiving meal. I hope you enjoy!

Broccoli Rice Casserole

3 cups cooked rice
1 10 oz package frozen broccoli spears, cooked and chopped
1 T. butter
½ cup onion, finely chopped

1 can cream of chicken-mushroom soup
1 can cheddar cheese soup (or one jar of Cheez-Whiz)
4 oz  (or more) shredded Velveeta (American not cheddar) cheese

Saute onion in butter. Add chopped broccoli and sauté together for about two minutes. Mix all ingredients (except for shredded cheese and pour into casserole dish. Top with shredded cheese. Bake at 350 degrees (covered) for 20 minutes. Remove cover and bake 10 more minutes. Serve. Easily doubled but may want to add two cans of soup for moisture).

NOTES: The original recipe calls for Cheez-Whiz. I trouble finding that so I have changed to cheddar cheese soup and have used Velveeta. I do not use frozen chopped broccoli. I have found them to be tough. I think the secret is in the sautéing the onion, butter and broccoli.

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Good Teachers Teach All Children

Did you know it is American Education Week? Happy week and I hope you will join me in celebrating the gift of teaching. I often say I believe teaching is the highest calling, and I do. Take a minute and send a message, a note or a shout out to one of your own teachers. Then, if you have students in school do the same for one of their teachers.

Rachel has had many good teachers in her 12+ years in the school system. Yes, she is only in the 9th grade but preschool services for her began at 3.  I could write and write about the many great teachers, paras and related services professionals she has had but today I’ll focus on one. Today, I’m going to do a little double duty because Rachel and her English teacher are receiving an award from the Olathe Optimist Club. I think it is appropriate that it is during American Education Week. The Rachel-Ms. C Duo was nominated by one of her high school’s assistant principals. The award criteria states:

Please provide a brief statement about the mentoring relationship between the instructor and the teen and support provided to the teen to assist the student to overcome diversity or excel in one of the following areas, or other as you may designate:
• Overcoming physical or personal challenges
• Academic achievement- high achievement or outstanding improvement
• Athletic achievement
• Leadership development
• Act of bravery

I mentioned Ms. C earlier this year. I suspect when the Optimists developed this criteria they were not thinking of the bravery of both the teacher and the student in this situation. A teacher who reached out to a former teacher and then was brave enough to reach out to Rachel’s parents and say, “I need help. I want to teach your daughter and I am unsure that I know how.” A kiss wasn’t appropriate from this momma, but a pat on the hand and a few stories of how we are going to make this work sufficed. Rachel is brave everyday. As her head is full of so much and by nature of her Down syndrome, she has to work so very hard to sort it all out. She has met the challenge though and moved right along demonstrating to us that she can grasp the important themes in “Of Mice and Men” and “The Odyssey.”  This teacher is brave enough to say “let’s try letting her do this without help and see how she does. Are you okay with that?” Of course, I am thrilled because that embraces our own philosophy.

I believe that good teachers teach. Many of Rachel’s best teachers didn’t have specialized “special education” training. However, they believe that all children can learn and that you find a way to teach them and find out what they have learned. That may not look like all the other colors in the box.

family circus crayons

It may look like coloring outside the lines. Ms. C told me that she was kind of embarrassed for receiving an award for doing what she is supposed to do in her job. My response, “You have no idea….” Ms. C sends me weekly summaries of the plan for the week so we can help Rachel at home. Ms. C sends me study guides – usually ahead of schedule so we have time for Rachel to practice, practice, practice because repetition and familiarity are key. She understands that for Rachel there is a big difference in a multiple choice, matching, or fill in the blank test. She understands that Rachel will rise to the occasion and do her very best if she knows what is expected. She also allows Rachel to come in and chat with her between classes, and Rachel loves this. She helps Rachel to exceed expectations because she exceeds expectations.

Ms. C seems to have embraced our idea of inclusion. Inclusion isn’t just about the classroom teaching. It is about the process. It is about the classroom interactions. It is about others seeing Rachel and others with intellectual disabilities as capable. The long-term rewards for Rachel and other students are immeasurable. I suspect the results will include more jobs for individuals with disabilities and the ability to interact with clients and managers who are different.  I suspect a group of people who will better navigate the course of life.

optimist speech optimist star 1

Good teachers teach. Today, I was proud to watch as one of those good teachers and her brave student Rachel were recognized as Optimist Stars for believing, dreaming and doing. Thanks to the Olathe Optimist, Olathe South and the Vice Principal for recognizing a “super amazing teacher” and a girl named Rachel who is changing perceptions on a daily basis!

optimist star 2

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Pink House Update

Here I am again talking about that famous pink house. That would be Rachel’s Pink House and not John Mellencamp’s. There’s a solution to my obsession: Congress can just Pass the ABLE Act. When last I blogged about Rachel’s Pink House and the ABLE Act, I gave you a little history lesson via the yellow brick road.

I love my life tfs slide

Today’s update is this. We have 381 House co-sponsors We have 74 Senate Co-Sponsors.  Advocates have been bombarding House Majority Leader McCarthy (R-CA) and Speaker John Boehner (R-OH) and urging them to bring the ABLE Act of 2013 to the House floor for a vote under suspension during this lame duck session. The 113th Congress adjourns on December 12. If the bill is not passed, we start over. We’ve been starting over for about eight years. I’ve spent about eight years of Rachel’s life advocating for this change.

To quote fellow ambassador Kelly Kulzer-Reyes letter to the editor in The Bakersfield California, “Just because my daughter has Down syndrome should not prevent her from achieving her goals. Amelia can work a full-time job, be a productive member of society and pay taxes — but because of these outdated laws placed on individuals with disabilities, people like my daughter are currently being held back in life.” That is the truth for Rachel and Amelia and so many others.

We just finished our 2014 election. The voters spoke. The American people want to see Congress get some things done. As I love to say, they want to see Congress play together in the sand box. So again I plead for Rachel, Heather, Ben, Amelia, Sara and the thousands of others with Down syndrome and other disabilities who have big dreams to achieve. Today, I again say to Congress, please send the ABLE ACT of 2013 to the House and Senate floors for a vote before December 12. Rachel’s got big dreams and we have a few other things to do in preparation for those dreams.  Go ahead now and show the American people that Democracy can and does work. Show them that you can come together and pass a bill that makes sense. The time is now to do the right thing. #passTHEABLEAct and send it to the President’s desk to sign into law. The time is always right to do the right thing!

time to do what is right


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Social Inclusion: 5 MORE Tips for Teachers

Wow! You guys like social inclusion tips. Many of you reached out and wanted to share the first five tips and some of you even wanted to use them in newsletters! This is one of my main purposes in blogging is to share information that might help someone. So a pat on a the back for all of us.  As I mentioned in the original post, I made a top ten list. This blog completes the set and includes the second five of Jawanda’s Top Ten Tips for Teachers.


6. Be consistent in the classroom, playground, assemblies, etc. All students want to know they matter, so being consistent with all students helps them feel like they are being treated the same.
a. If everyone has homework then all students have homework and are expected to do it. Of course someone’s work might be modified, but no one needs to know. All they know is everyone has homework.
b. Keep expectations the same. If students are called out for doing something wrong, then all students should be called out for it. Hence they’re all the same. Students know when they are being treated differently.
c. Do not group students with disabilities together in a section or bring them in as a group. They should be part of their general education class group. Also – if you have noise sensitivity issues, fear of heights, etc. find peers to help students with that.
d. Call on students when they know the answer because students want to participate. Likewise if you call on students without hands up make sure to do the same with those who have special needs. Just gently guide them to the answer. The sense of pride students feel when they answer a question off guard is amazing!
e. When planning activities, outings, parties, etc. be mindful of the child with Down syndrome and health issues, sensory issues, etc. Consider ahead of time who they can be partnered with for a successful experience and that should not be an adult.

7. Basic “Good Teaching” Strategies: Get to know your students. Learn about Down syndrome. Focus on abilities, not disabilities. Be involved in IEP meetings. Share strengths. What is the student doing really well? Where has the student shown growth? Be willing to share thoughts, ideas, and strategies. This is your student and you are a member of the team. :)

8. Listen to their stories and encourage them to share them with others. If a teacher has time to encourage social time, students will foster and embrace it. Remember to give a child with Down syndrome at least 10 seconds to process what you are saying. Sometimes it takes their brains a little longer to pull the information. This is actually a good rule for many people with and without an intellectual disability.

9. Conflict and Adults Being Adults: When there is a conflict with a child with Down syndrome, it is often difficult to get an accurate accounting of what happened. I caution you –

a. Do not call in those involved in one big group. Bring them in separately. Many if not most children with Down syndrome are pleasers. By nature of their disability, they have working memory issues. So when you bring them in with the person who hurt them (physically or emotionally), they become confused and they may say nothing happened. Often they confuse what happened weeks, months or years ago with what happened today. They may also confuse reality with their imaginary life. Some researchers say they see life as one movie, each frame building upon another.
b. Try to find out anonymously from someone who wasn’t involved in the issue.
c. If a person with Down syndrome does something wrong, they should be disciplined appropriately but you must know they understand. You must also learn what the antecedent was. Example: My daughter got in trouble for putting her hands on someone in elementary. She physically tried to move them because they broke in line. That’s not the story the other child told though. Another child went to the teacher and told her that someone broke in line and that’s why Rachel put her hands on them. Rachel should not have done this, but she is a rules follower and sometimes feels it is her job to enforce them! She decided it was her job to move this child to where she belonged.
d. As adults pay attention to body language and listen to conversation and intervene if needed. Contact parents if needed.

10. Outside/extra-curricular activities. If possible, be a part of the child’s life outside of school. For example, if they have a Down syndrome walk or other awareness event, try to participate. If you can or can’t participate, encourage students to participate.
a. Encourage students with Down syndrome to find activities that are not disability specific. Special Olympics, Field of Dreams and Adaptive Sports are awesome. In these venues primarily you will build relationships with others with disabilities. There is a place for these relationships and they are important. But is there a church that sponsors Upward programs that are well-suited for students with disabilities to be included with non-disabled peers? What about the local dance program? Some of these may just work and a family might not think of it or consider it unless you mention or encourage it. This provides a great opportunity for learning for the non-disabled peers and the adults and hopefully builds peer relationships for school and other real world experiences. Rachel has always participated at a typical dance studio and community theater, Christian Youth Theater (CYTKC.) Friends from both places are at her school and they look out for her. One of her CYTKC friends is even her peer mentor at school.

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b. Look for ways to include students with Down syndrome. One of the special education teachers who was at Rachel’s transition meeting noticed that she liked sports. She called and wanted to know if I thought Rachel would want to be the Freshman Volleyball Manager. She coached and she thought it would be fun and give Rachel a peer group. Rachel loved being the volleyball manager! She gave them pep talks and went to the games and has in the teacher/coach a mentor.

I would remind you that most of these tips came directly from teachers who I have witnessed having done a good job with students with Down syndrome. A resource I highly recommend is Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges by Dennis McGuire and Brian Chicoine. It says adults but really addresses issues beginning in adolescence and is just some good basic education.

Many of the things I’ve mentioned could be good for any students and they aren’t new discoveries. Persistence and willingness to take risks are keys. Educators get to see how students interact and are able to give guidance that a family/child needs. Often our friendship woes are the same whether we have a disability, communication disorder or not. However, it is much harder for students with communication disorders to maneuver systems and communicate among so many people in understandable ways. I personally believe that the value of positive peer relationships in any of our lives is not measurable!

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