Rachel and Her Ear Aid

A bit of a new direction today but I hope some educational info for some of you. Those of you who know me or have followed me or stalk us (ha) through my blog know of Rachel’s ear surgeries the past two years.  The history is she inherited my allergies and ear issues.  Her doctors all say her ear canals are small but as far as Down syndrome goes, they’ve seen smaller. She got her 1st set of tubes when she was about two and half (I think) and they took her adenoids out. Second set of tubes when she was four. Then we rocked along with our share of ear infections through the years. About three years ago her ENT discovered a hole in her eardrum. We watched for a bit and they noted some hearing loss in that ear so her referred us to an Otologic Specialist. We love both doctors and both offices. The plan was to go in and repair that ear drum with the hope that it would help recover her hearing loss. No assurances.

Ear Surgery #1

Ear Surgery #1 Marisol has had three ear surgeries, too.

So the repair went well but guess what? Skin was growing on the back of her eardrum. Who knew this could happen and who knew this was an issue. Skin regenerates so the doctor removed it but told us he would have to go back in to make sure the skin had not regenerated. The skin can grow into the bones and even farther and cause many issues.  So a few months later, back into the ear of Rachel he goes. Guess what? The skin had regenerated and Rachel’s skin had regenerated prolifically. It had tangled into bones. So he had to remove some bones and we would be having a 3rd surgery. All the while Rachel was a trooper. The biggest challenge for her was that she couldn’t dance for about a month after a surgery. She also couldn’t carry her heavy backpack and had to leave classes early to avoid her head being hit by the 2100 students in the hallways of her high school.  So a few months later, here we go again and guess what? The skin had not regenerated!  The doctor rebuilt bones and we were all optimistic that her hearing loss would recover.

Ear surgery #3

Ear surgery #3

First follow-up and her hearing had not improved.  No big concern because her ear was still healing. Then, a few months later we’re back for our 2nd follow-up and her hearing had not improved.  I feel like I own a few rooms in the surgeon’s house at this point so I know him pretty well. He is ordinarily optimistic and I could tell he was not feeling confident.  He told me that he could be wrong, but he didn’t think the surgeries had improved the hearing and we would probably need a hearing aid. Let’s get through the summer and do one more test though.  I kind of put that out of my mind.

When we moved her 8 years ago when Rachel was in 3rd grade, we met a lovely family at school open house.  The mom of the family is an audiologist. We have stayed friends and get together from time to time.  I contacted her and had her explain the hearing test to me. Everyone including my friend kept saying to me, “Gosh we guess you all notice that she doesn’t hear as well out of her left ear.” No we never noticed any issues with her hearing. In fact, no one ever noticed any issues with her hearing. My friend explained that Rachel’s hearing loss probably most impacted her in crowds and groups. She said she heard things like a finger was stuck in her hear. Articulation and communicating can be challenging for individuals with Down syndrome. While Rachel’s speech is semi-clear depending on the situation, I thought about how detrimental this must be for her. Off we go to the August follow-up and hearing test.  No improvement. Our doctor was noticeably disappointed that the surgery had not worked.

Rachel who is ordinarily a trooper with ear surgeries, oral surgery and regular doctor’s appointment where they take her blood was less than enthusiastic. I was less than enthusiastic. Don’t misunderstand. I am thrilled that we have such a thing as hearing aids.  But this was just one more thing to have to deal with. One more thing to make her different. One more thing to deal with insurance over because many if not most insurance companies do not pay for hearing aids. I also felt guilty for feeling this way. Many parents I know wish this was the worst thing they had to deal with. Rachel was so upset on the way home that she was sobbing. I told her we would get started in school and then we worry about it.

The time came to go to the audiologist to get our practice hearing aid. She was up and down. The audiologist showed me the major difference in what she was hearing with and without the hearing aid. I felt guilty again. Bless her little heart. She has been compensating and doing a darn good job of it.  It was a major difference. One minute Rachel was happy with it and the next she was sobbing again. Of course, many children with Down syndrome are pleasers. Rachel is definitely a pleaser. Eventually, you will get her to what she is really feeling but her initial response is almost always to tell you what you want to hear. File that in your reserves for future reference in dealing with your kids. At one point she became almost inconsolable. She was sobbing and pleading “Mommy, I not want to wear it.”  The audiologist was quite good with her. I was trying to figure out what direction to go when Rachel said through her tears and snot, “I not want to leave class early.” That was the turning point. That’s when I knew what the problem was. Rachel thought she had the same limitations with her hearing aid as she did when she had surgery. She thought she couldn’t dance anymore. Once I understood this, the audiologist and I both explained that she could do all the things she currently did. No hearing aid in the shower or when swimming but it would not impact her in her activities other than to help her. She warmed up a bit and said she would wear it home. She had CYT class that night and was convinced that she would not need it for class. I was convinced it would definitely help her in her musical theater endeavors. So she agreed to wear it and ask the teacher/director, Cody, what he thought. Well, he picked up on the cues and assured her that he thought it would help her in her singing and acting. Her trademark smile returned.

Rachel modeling her ear aid. You can't even see it.

Rachel modeling her ear aid. You can’t even see it.

That was about five weeks ago. She has embraced her “ear aid.” She got her own “ear aid” about a week ago. Our insurance did pay for it (partly because we have met our deductible and out-of-pocket from ear surgery and a tonsillectomy this year!) Jonathan says he notices she doesn’t say huh as much. Truly, I can’t tell a difference but she says she hears better. I think she must or she wouldn’t wear it.

There’s a lot to be learned from the “tale of Rachel and her “ear aid.”




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Sad, Cures and Celebrating Down Syndrome!~

It’s October and that means it is National Down Syndrome Awareness Month. Earlier this week I blogged about an experience that made me sad last weekend. Today, I want to talk about celebrating and valuing lives. Since I posted that blog about “those” kids and sadness on Monday, a lot has transpired.

Monday I got an email from Jenn Greenstreet, Creator/ED of Just Like You (JLY) Films. Jenn wanted to do a video to promote October as Anti-Bullying Month and she wanted to invite all the Just Like You stars to Anti-Bullying pledge.  I let her know that Rachel and Savanna were “in.” In just over 24 hours she pulled a group together and the talented Isaac Alongi shot the footage. Yesterday morning we received the finished product from Jenn. Here it is:

Just Like You Anti-Bullying Pledge

Shooting JLY Anti-Bullying Pledge 2015Shooting JLY Anti-Bullying Pledge 2015


Shooting JLY-Down syndrome 2012
Shooting JLY-Down syndrome 2012

Please feel free to share it and maybe you can get your school to do an Anti-Bullying Pledge Campaign. Awesome opportunity and so honored that Rachel was able to participate.  I’m hoping her school will decide to take this and do something with it!

Then, yesterday afternoon my notifications popped and Chuck France had tagged me in a post. Chuck is the photographer who was “randomly” assigned to spend a day photographing Rachel as part of an NBC Online news piece. NDSS had recommended our family for the news piece. The writer wanted a family’s thoughts on the then new research that showed there might be a “cure” for Down syndrome. Chuck did an amazing job and we have stayed connected. We enjoy his work and consider him a friend. He has told us that this was one of his favorite shoots ever. He told us Rachel impacted his life. Yesterday, I saw in frames through the vehicle of the Steller Storytelling how Rachel had truly impacted him.

chuck france fb post

He tagged us in this and I hope you will check out “A Day with Rachel: Living With Down Syndrome.”

My favorite part –

chuck france stellar 1

Because of this experience, he does not see her or anyone else with Down syndrome as one of “those” kids.

chuck france stellar w dorachuck france thx rachel

One person changed by an encounter with a young lady with Down syndrome. In turn, how many people will he share that story with? Thank you, Chuck.

Here are links to the story and blogs mentioned above.

Curing Down Syndrome – thesassysoutherngal, August 2013

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“Those” Kids

Saturday I went to the Texas A&M Arkansas football game in Dallas. Most of my readers know I am a huge Arkansas Razorback fan. The game was very exciting, but after dominating most of the game, we lost. I was sad.

I went to the game with a friend. We stopped by an event and ate. Two people sat at our table and they were educators. We began to chat and one of the ladies wanted to know what I did. I know my girlfriend who was with me was thinking, “Why did you have to ask.” I told her my job title, and she began asking questions.  She said to her friend, “I don’t think we have any Down’s kids at our school.” The friend said she wasn’t sure if there was anyone with “Down’s right now but those kids are in life skills. We do mainstreaming though.”  I remarked that Rachel is in general education and that I am staunch advocate of inclusion. This opened a big box of discussion and questions. In the course of the conversing I heard the terms “those kids” and “Down’s kids” so much that I could feel my blood pressure rising. I think I deserve an award or something for not giving in to my overwhelming desire to correct the terminology. I tried to model appropriate language, but it just went right over the heads.  When she told me that it was probably better for “those” kids to learn how to cook than to do Algebra, I pointed out that she might want to look up the research on inclusion of students with disabilities in general education classes and high expectations. She assured me that many of “those” kids had worked with her in her role in the school.

It really wasn’t the setting for such a discussion. It was loud and there were lots of distractions. I made the decision to just let it go. No saving the world on Saturday. However, I did manage to share with her that I felt like parents were often told that life skills and self-contained classrooms were best for their child when the research doesn’t support that. I told her that I felt like often times parents are afraid and so they make that choice out of fear. She told me she could tell I was passionate about what I did and that was good.  Finally, she  told me that most parents probably don’t really know what is available or what “those” kids need.

Losing a football game wasn’t the saddest part of my day Saturday.

Disclaimer: In all fairness this is a short synopsis of a long conversation but I do believe I accurately and honestly captured the plot and spirit of the conversation. 

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Rachel’s Typical Sophomore Year

We are almost done with the 1st quarter of Rachel’s sophomore year. I would say she and we have had an outstanding start to this school year. Now, as you check this out I want you to remember that a lot of behind the scenes work goes into building success. A lot of collaborating and a lot of relationship building. That’s a blog for another day. Today, I would say her year is very typical. A few thoughts and pictures to illustrate.

Homecoming 2015 was Saturday night. She invited her friend Kyle who goes to another school. He loves to dance too.

fun corsage HC 15 rachel kyle excited HC 15

They were invited to join our fabulous friend Andrea’s group for dinner. You may remember Andrea was Rachel’s peer mentor last year. We know her from Christian Youth Theater.  She’s a senior and I already know I will miss her next year. She’s an amazing young woman and a great example for all of us.

andrea rachel kyle kevin HC15 all the pretty girls HC 15

Kyle and Rachel had a great time eating out with the group and dancing. One interesting tidbit for you. Kyle really wanted to get their picture made in the photo booth. The line was very long. There is no one who likes dancing more than Rachel. She reluctantly joined him in the photo booth line but she kept getting derailed because she would hear a song and she would take off. Finally someone helped them navigate the photo booth line and both of them were happy!

One of Rachel’s summer activities is to read some of the upcoming school year’s novels. This past summer she read Fahrenheit 451. Then she read it again with the class. I didn’t really think she would like it but she seemed to like it okay. She told us it reminded her of The Book Thief. I wanted to know how so and she said, “They don’t like books in The Book Thief either.”  That’s enough for me.

Again, Rachel has an amazing English teacher who is great at differentiating instruction and providing variety for the unique needs of the students. A couple of weeks ago she sent me this: “I just wanted to let you know that during class today students wrote a script based on Mildred and Guy Montag’s relationship—the presentation is a “date night” for the couple and their scripts needed to reflect the student’s understanding of Mildred and Guy’s relationship as depicted in the novel. Rachel’s group was so welcoming and the three of them knocked it out of the park! Rachel was all in with her body language, her tone of voice when reading her lines, and was super supportive to all of the other group performances.” Kudos to a teacher that is doing a great job in the classroom but also recognizes the value of making sure parents learn about some of the positives happening in class.

Last little tidbit is from Parenting and Child Development class. Rachel LOVES this class. Again, she has an outstanding teacher. She has been taking care of Baby Sally for a long time and she loves little children. She has shared with the teacher some of the things that she has found inappropriate in class movies and subject matter. She will be bringing home “baby” one day soon and that should be interesting. This week they had the opportunity to wear the “pregnancy belly.” Rachel told me she was a little scared about this, and we talked about it. They sent me a picture and she doesn’t appear to be afraid! I hope she remembers that inappropriate list she shared with the teacher!

pg belly 15 showing off the pg belly 15

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Buddy Walk® : Game Changer in the Down Syndrome Community

Tomorrow is the 21st New York City Buddy Walk®. One of the coolest parts of the NYC event is the Times Square Video Presentation. Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of Times Square. This year’s video begins promptly at 10:00 AM ET and will be shown on the ClearChannel screen above the Blue Fin (W 47th Street and Broadway). If you are in New York City, please check it out and you will see Rachel and her friend Mr. Pete on the big screen! We don’t get the live feed this year but NDSS promises to have it up YouTube soon. I think Rachel’s picture has been on Time’s Square 12 times. This is a collage of the pictures. In the early years you could submit two pictures!

times square collage 15

This is a picture from our first  and only trip to the New York City Buddy Walk® in 2000. I always laugh and say it must be where her love for the Big Apple started!

nyc bw daddy_rachel

The National Down Syndrome Society (NDSS) established the Buddy Walk program in 1995 to promote acceptance and inclusion of people with Down syndrome and to celebrate Down Syndrome Awareness Month in October. The name Buddy Walk® promotes inclusion between friends of every ability. Since 1995, the Buddy Walk® has become the premier awareness event for Down syndrome in the United States. It is also the world’s most widely recognized public awareness program for the Down syndrome community.

In Rachel’s lifetime, there have been three things that I believe have been game changers in the Down syndrome community. I do not consider it overly dramatic when I say that the Buddy Walk® has changed the face of Down syndrome. When the Buddy Walk® was started – we didn’t have all the social media we have now. Most of our groups were started by wonderful parents who wanted people to provide accurate information about Down syndrome and wanted new parents to know they were not alone. Many if not most groups operated out of people’s homes and most groups had very little money. Though the intent of the Buddy Walk® was education, acceptance and awareness, the creators knew that this could be a fundraiser too. I don’t think anyone knew the impact it would make.  As groups raised money, they were able to do more outreach, training and education. They were able to create and provide quality professional looking materials. Through the partnerships with the local affiliates NDSS has been able to strengthen the NDSS Policy Center and our political outreach. The Buddy Walk® was the trigger that has made it possible for groups to truly reach more families, educators, healthcare professionals, employers, sponsors,  individuals with Down syndrome and much more.  The Buddy Walk® changed the face of Down syndrome.

My friend Joe Meares, who helped to start Dads Appreciating Down Syndrome (D.A.D.S) and launch Down Syndrome Affiliates in Action (DSAIA) said this, “The Buddy Walk® absolutely was the game changer. In fact, the number of Down syndrome groups in the US increased by 40% from 1996-2002 simply because Buddy Walk® not only gave communities a vehicle for raising awareness, but, it provided the financial resources to organize and provide infrastructure and programs.”

Yes, there is so much work to be done. But today and tomorrow and maybe a few more days in the future, I’m just going to celebrate the lives of amazing people with Down syndrome!


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Awe Struck/Never Forget 9-11

Like many of you I remember exactly what I was doing when I heard that the World Trade Center had been hit by planes. I was not at home and everyone around me was chattering about it but no one seemed to have good information. I remembered calling Jonathan and hearing him say, “It is true. Marsh & Mclennan (Sedgwick’s Parent Company at the time) is in the World Trade Center. We’re taking over their communications. I have to go.” I remember coming home and turning on my television to the horrific images. I remember that I couldn’t take my eyes away from the television for days, but I didn’t want to watch anymore. I remember Rachel stopping each time she heard “God Bless America” and dancing and singing in front of the television. She was only two.

NYC Rachel 16 033

I saw the Twin Towers when we were in NYC to see Rachel’s picture on Times Square for the NDSS Buddy Walk® Video presentation in 2000. In some of our pictures, you can see the towers in the background. I had been to Ground Zero on our trip to NYC in 2008. There was no museum, only a big hole in the ground. This year, we were back in NYC for Rachel’s birthday. What a privilege it was to visit Freedom Tower with our friend and native New Yorker, Mr. Pete. Mr. Pete was in the Twin Towers on 9-11. He shared his story. We were moved and touched. Not just Jonathan and me but Rachel, too. In her way, she understood the importance and the emotion.

NYC Rachel 16 040

Our time with him at the fountain and the memorial was very moving. My time with Mr. Pete in his city that he loves and hearing his story much gave me a different and deeper view. We will never forget.

NYC Rachel 16 045

NYC Rachel 16 036

I find it a fitting tribute that this picture of Rachel and Mr. Pete was selected for the 2015 NDSS Buddy Walk® Times Square Video Presentation.

mr pete & rachel FT Times square

So earlier this week I was in Washington DC. As part of my new job duties as the National Down Syndrome Society Manager of Grassroots Advocacy, I needed to be in DC for some training and work. While there we had the opportunity to make some Hill visits. Then, yesterday morning I was able to attend the ABLE Implementation Roundtable hosted by Congressman Ander Crenshaw (R-FL). Our own Sara Weir, NDSS President, was one of those representing the disability community.

hogs & dc & kyle 057

There was an impressive group of people including representatives from Treasury, providers, State Treasurers, College Savings Plan administrators, the disability community and of course legislators or staff from the lead sponsor’s offices.

hogs & dc & kyle 064

Senator Burr (R-NC), Congressman Sessions (R-TX) and Congressman Van Hollen (D-MD) all had staff in the meeting. Both Congresswoman McMorris Rodgers (R-WA) and Senator Casey (D-PA) were key leaders in shepherding this bill through to the end and both were able to pop in for part of the meeting. The discussion was rich and everyone seemed committed to getting the Stephen Beck Jr. ABLE Act implemented in sensible ways.

As I sat there, I couldn’t help by smile to myself and I sent Jonathan this text: “Gotta tell you no matter how many times I’m here, every time I’m on the Hill with Congressmen and Senators and staff members, I’m awed that a girl from Rose Bud (actually Joy) gets to do this.”

I will Never Forget. May none of us. God Bless America.


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College Football and Blueberries?

Strange title, I know. Most who know me know that college football season is my favorite time of the year. I love going to the University of Arkansas campus for football games. I must admit it makes me a little melancholy as I reminisce of the “old” days. This is my name on the U of A sidewalk in front of Old Main. All graduates have their name inscribed in a sidewalk on campus. This is from my graduate degree.

UA graduate degree name in sidewalk in front of Old Main.

The old days are filled with rich memories and great friends. Usually we are able to re-connect with many of those friends and go back to that galaxy that sometimes seems far, far away.

We all have friends who we don’t see for many years and then we pick up where we left off. We saw some of those this weekend.  One set invited us to their box which was awesome because it was really hot at the game! We’ve actually stayed in touch but haven’t seen each other often. Ran into them at the baseball tournament and Rachel and Paula became fast besties.Good people.

tinsely box w allie UTEP 15

We had also bumped into a great friend from graduate school and met his sweet wife. When they learned how Rachel loved cheerleaders and dancing, they wanted their lovely daughter to meet Rachel. She is a UA pom-pom girl.

abby peterson pom girl

We were able to connect with her and many other spirit squad members who were so kind and inviting with Rachel. Like our buddy, baseball player Bobby Wernes, I am impressed with these young people who have tons of children vying for their time.

allie pom girl

They were hot, too, but they stop,put on their winning smiles and interact. Memorable moments for Rachel and her parents. Thank you. And we had a chance to see one of our own sweet Blue Valley Baptist girls who is in the Razorback Marching Band.

One of the highlights of many of our Razorback weekends is our overnight stays with our friends the Hiatt’s. We’ve known them since graduate school at University Baptist Church. They live on a beautiful farm that overlooks the mountains. I simply love visiting them. They are always gracious to open their home to us and our friends, too!  I call it the Hiatt Bed and Breakfast. Mom Dana and Rachel also have one of those special relationships she develops with people. They just opened Hiatt’s Blueberry Farm. I’m always awake before everyone else so Sunday morning I made us a little dish using Hiatt’s Blueberries.

blueberry poppy seed brunch cake

Found this recipe  20 years ago and have always liked it. Several wanted the recipe so see recipe below with credit to  Pillsbury.

You can see here why we love our time sitting on their back deck looking over God’s country. Friends, football, sunsets, fun times and beautiful reminders of God’s love and faithfulness to me.

hiatt b&b hiatt sunset w allie 15

Blueberry Poppy Seed Brunch Cake
1/2 cup butter, softened
2/3 cup sugar
1 egg
2 teaspoons grated lemon peel
1-1/2 cups all-purpose flour
2 tablespoons poppy seeds
1/2 teaspoon baking powder
1/4 teaspoon baking soda
1/4 teaspoon salt
1/2 cup sour cream

1/3 cup sugar
2 teaspoons all-purpose flour
1/4 teaspoon ground nutmeg (I used cinnamon)
2cups fresh or frozen unsweetened blueberries

1/2 cup confectioners’ sugar
1 tablespoon milk

In a small bowl, cream butter and sugar until light and fluffy. Beat in egg and lemon peel. Combine the flour, poppy seeds, baking powder, baking soda and salt; add to the creamed mixture alternately with sour cream. Beat just until combined. Spread into a greased 9-in. springform pan. I have made in a round cake pan and it works fine.

For topping, in a small bowl, combine the sugar, flour and cinnamon; gently stir in blueberries until coated. Sprinkle over batter. Bake at 350° for 45 – 50 minutes or until a toothpick inserted near the center comes out clean. Cool for 10 minutes on a wire rack; remove sides of pan.

In a small bowl, whisk confectioners’ sugar and milk until smooth; drizzle over cake.

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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.

sept 15 015

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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