Two Pieces of the Accommodations/ Modifications Maze

I am thankful for modifications and accommodations. Crazy thinking and right here at Thanksgiving you say? But I am serious. I am thankful that because of IDEA and because of modifications and accommodations, Rachel can be in the general education classroom and learn alongside others and learn many of the same things other students learn.

Rachel is a sophomore.

school picture 2015

Recently, I’ve realized a lot of people asked me about how we modify Rachel’s work in high school. Check out any of the online groups about educating students with disabilities, and you will see that questions about modifications and accommodations are quite common. Then, the other comment I hear a lot is “My child doesn’t read on grade level so he/she cannot be in gen ed.” Rachel Mast is above grade level in the following:
• Sassy
• Compassionate
• Hard worker
• Positive attitude
• Loving life

• Boy craziness

According to comprehension tests Rachel Mast is not on the 10th grade level in reading. She is a good reader. When you asked her about a story or what they are doing in class, most of the time you get a pretty decent summary. It kind of depends on the subject matter. She gets the big picture though and that’s enough.

I am not a trained professional who knows a lot about accommodations and modifications. I’ve learned a lot from attending workshop, listening to other parents, teachers and my best ever Professor, Rachel. Today, I just want to share two thoughts.
The two most important things on Rachel’s list are:
1. Communication – para’s will assist with home-school communication, assignments, organization of materials, upcoming tests, projects and assignments via electronic device (iPad).
2. Teachers will provide study guides and test format with sample questions to parents one week in advance. This also applies to big projects.
Some thoughts-
Rachel works hard to stay engaged in her classes all day. By the end of the day, she sometimes says her brain is full. I imagine this is very true. She confuses details and days and so forth. We have to have dependable communication so we know what is going on. We use an app called “Notability” and that is how communication goes back and forth. Instead of my having a complete meltdown trying to decipher her papers, I can find out what she is actually supposed to be doing and when it is due. Rachel can also take pictures of assignments and sometimes they even video her.

Her iPad also has the flash card program, Quizlet. Rachel learns best for test taking by using flash cards. Before Quizlet (The iPad vs the Index Card Lady), we had hundreds if not thousands of Ziploc bags with flash cards inside handmade by mom. Quizlet allows us to make flash cards set up with multiple choices. She is able to study for tests on her iPad during seminar, during free time at school, in the car night or day, or almost anytime. For science I am able to access the teacher posted list directly on Quizlet. I make a copy and set up multiple choice questions to prep Rachel for tests. Rachel has a lot of information and understands a lot. There are certain formats that are just more effective for finding out what she knows.

Another one of Rachel’s accommodations is to allow her to PowerPoint Presentations instead of essays or essay tests when appropriate. For one of her Human Geography tests, the teacher sent a template of a PowerPoint. It was kind of a fill-in-the-blank PowerPoint. She had to put the correct term or definition and could get extra credit for pictures in certain spots. This is an example of one of the slides.

geogrpahy slide

As I said I am not a teacher and have had no formal training in making modifications. I do know my child though and God gave me a good measure of common sense. I just try to apply that as we think through what will work and what won’t. We have been fortunate to have had great resource teachers  who have been good at helping make those modifications. And we have had some of the most outstanding general education teachers. In fact, I told Rachel’s English teacher the other day that she needs to be teaching classes to other teachers on how to modify, accommodate and include!

Today, Rachel has her final over Macbeth. Rachel is full of surprises and has shocked both her dad and me by liking Shakespeare. I wasn’t too surprised that she enjoyed Romeo and Juliet because it is a love story, and she is such a romantic. We (teachers, para’s and parents) have noticed that she gets into the drama of Shakespeare. I hear her reading, and she is in character using her British accent and acting it out. It is rather entertaining. Today’s test has several pieces and Rachel has been studying. One part of the test requires the students to read a passage and then write about it with some very specific directions. Rachel’s teacher said that Rachel can share her thoughts on the passage. That seems fair and appropriate. Rachel read the passage and said, “Macbeth says nothing in life is perfect. Life is like a stage. Life is over soon like a candle.” Don’t know about you, but I say that’s pretty good. Her teacher is pretty amazing and I suspect she’ll think it’s pretty good, too.
A few years ago her class had read a clip from “A Christmas Carol.” That amazing teacher said she knew Rachel knew the information so she decided to give her the same 15 question test as the other students. She allowed her to answer the questions orally though. Sometimes there is a disconnect between the brain and the written answer so if you can give it orally it helps. You can also more easily clarify what she is trying to communicate. She said Rachel needed to employ a little self-talk to reason out some things. When all was said and done, Rachel made 14/15 on the same test as everyone else. The same teacher later told me that Rachel was the only student in the class who could answer a particular discussion question about Mr. Van Daan from “The Dairy of Anne Frank.”

My husband suggested that I used maze in the title of this blog because he said it is more like a maze than a puzzle. Each child is individual and each of our situations is individual, and we often feel lost. Frequently, I tell families you need to figure out your goals and what is important to you. Inclusion is important to our family. We believe it is important for individuals with Down syndrome to be included in school, church and the community. We do not believe school means just the academic setting either. There is a lot of work to be done in the extra-curricular arena at school.  That’s a blog for another day. I don’t want Rachel to memorize a piece from Macbeth or read “To Kill a Mockingbird” just so she can say she did it or read a great work of literature. I want her to be exposed to the same things as the people she will work with and for, the people she will live beside and the people she will worship with. For us inclusion goes way beyond the walls of the classroom and not just for Rachel but for the other students, too. They are the ones who will do life with Rachel and Lily and Stella and Ryan and Bella and Ben. They are the ones who will see the world through a different set of lenses and will help create a world that is more accepting and more inclusive.

So yes, I am thankful for the accommodations and modifications that to the maximum extent appropriate allow Rachel to be educated alongside children who are not considered disabled in the regular education environment. Seems like I might have read that somewhere!  Inclusion done right works!

Happy Thanksgiving!

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Rachel Brings Home a Baby!

Rachel has been anticipating this day for a while. She has been giddy about bringing home the simulated baby from Parenting and Child Development Class. Jonathan and I knew this would be a great real life type learning experience.

Everyone knows Baby Sally and most everyone knows Marisol. Rachel often reminds me that she is a good mom to them and she is. She also reminds me that she knows how to take care of “bebies” because she took a Babysitter class. Indeed she did and did well. She takes her child care experiences very seriously. Some parents might take lessons from her.

I wish I could capture her facial expressions which have expressed joy, frustration and fear. Sounds a lot like a real mom. I met her at school and her case manager was with her carrying the baby car seat with Baby Sarah Nicole in it.

baby sarah nicole fitzgerald

The baby’s name is Sarah but Rachel added the Nicole because that is her middle  name. I told her I wasn’t carrying the car seat. She had to to that.  She said it was heavy. It is but this is a real experience. Off we went.  Rachel started out thinking this was great fun. I do think she enjoyed the experience but it was truly a reality check for her. After the baby’s first episode of crying, Rachel held her and rocked her for a while. This was all in the first hour.

feeding baby sarah nicole baby sarah nicole up close

The next crying episodes were met more with a look of fear like “why won’t she stop crying.” In the beginning if I offered to give assistance, I was turned away but as the evening progressed my assistance was even solicited!

She had a spot just for Baby Sarah Nicole to hang out with Baby Sally and Marisol. It was really cute to listen to her talking to them about their new sister.

sally marisol sarah nicole

I jotted down some of Rachel’s thoughts and thought I would share them here.

  • This was hard.  It hurts my arm to carry the baby car seat. I will say that Baby Sarah Nicole is heavy!
  • I was hungry and need my food and the baby was crying.  I wanted to eat. I didn’t like that. In fact when dinner was ready, Baby Sarah Nicole was fussing and Rachel started to put her down to come and eat and we had to stop her. She interrupted Rachel’s dinner three times.
  • She is heavier than Baby Sally.
  • I had a hard time keeping her head stable.
  • I was afraid I would hurt the baby when I tried to burp her.
  • Sarah Nicole’s pants are hard to get off and on.
  • I thought I would hold her and play with her like Baby Sally.  Ms. V said we couldn’t dance with the baby.  She said the baby always had to be with me.

Baby Sarah Nicole woke Rachel at 5:40 am crying and then again at 5:50. Rachel got up and got the baby and comforted her though.

I think this was harder than Rachel thought it would be. Her expression when we told her she couldn’t leave the baby so she could eat was classic. Her look of “what do I do?” when she couldn’t get the baby to stop crying and her not wanting to put the baby down in the beginning was very realistic. It was very much like a new mom. My observation was the hardest thing for Rachel was keeping the baby’s head stable. We had to remind her about the head frequently. She told us that was hard. It was hard because she had to try to feed her or move her or diaper her and keep her head supported. That can be hard for anyone.

Rachel loves little children and is pretty good with them. In fact she is hoping to work in the school district’s Early Childhood Careers Program the next two years. She went on a tour of the program on Monday. Tomorrow she will give her book report in Parenting and Child Development on “The Very Hungry Caterpillar.” This is one of the puppets she made for her report.

very hungry caterpillar

Overall I was impressed with Rachel’s childcare.  Rachel has always talked about wanting to get married and be a mom. Last night she said, “I don’t think my husband and I will have any children.” That says a lot but perhaps the most telling remarks are from Baby Sally’s perspective. According to Rachel, Baby Sally didn’t like this the baby waking at 5:40 am. “Baby Sally likes to get up when I get up and this disturbed her.”  She went on to say that while Baby Sally loves Baby Sarah Nicole, she does not like her waking her so she is happy she won’t be back tonight.


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Food, Cooks and a Berry Dump Cake!

I have been surrounded by lots of good cooks. My grandmother has been gone for 13 years and people still talk about her dressing, also known as stuffing by the non-Southerner. Now my mom’s dressing is good, but she will admit that grandmother was the champion. My mother cooks lots of good things. My favorite is her chicken ‘n dumplings. I used to get them for my birthday and if I went there for my birthday, I’m sure she would make them for me. Because their birthdays are only two days apart, my niece and my dad celebrate their birthdays together every year. My mom makes a huge pot of chicken ‘n dumplings. This past year my niece posted a picture and said, “I know everyone thinks their grandma makes the best dumplings, but mine really does!” I agree so much that I don’t eat anyone else’s!


I married into a family of good cooks.My mother-in-law was an outstanding cook. We shared many recipes through the years. She often tried something new when we visited and now that she is gone, I really treasure those recipes. One of our favorites is Cheesy Chicken and another one that we love is her baked beans. I’ve shared both recipes often. I am thankful for a legacy of good cooks who passed it on to me. I am not nearly as good a cook as any of these ladies but they instilled in me a love for cooking and hospitality. I am thankful for that legacy.

Hospitality is important. I can still hear my dad saying to a guest, “We don’t have much but whatever we have you can have all you want.” Hospitality has nothing to do with how rich you are or how big or fancy your house is. It is a heart matter. It is an attitude of sharing what you have willingly, graciously, and gladly. By the standards of the community I live in, my house is average. But it is nicer than probably 95% of the houses people in the rest of the world live in. Think about that and think about the fact that a lot of people, children included, will go hungry today. Then, be thankful and hospitable.

I’m always looking for something new to try especially with berries. Rachel and Jonathan both love berries. I keep blueberries, blackberries and raspberries in my freezer to use year round but they had blackberries and raspberries on sale a the grocery yesterday so I wanted to try something different for Saturday breakfast.

hallowen & early nov 15 039

I make “Dump Cake” to take to dinners and often when I am provided for bereavement or new baby dinner. It is versatile and can be used as a dessert, a snack or for breakfast. My traditional recipe uses a can of cherry pie filling and crushed pineapple. I decided I could make a different version using blackberries and raspberries. This is the finished product.

hallowen & early nov 15 047

It is called dump cake for a reason. You literally dump in a pan. Now, if you aren’t much on cooking or don’t really like it but want to show some hospitality to others, this is the recipe for this one:

4 cups blackberries and raspberries, rinsed & drained

Sugar to taste (I used 1/4 cup)

1 box butter yellow cake mix

1 stick butter melted (or more!)

Heat oven to 350 degrees. Spray a 9 x 13 baking dish with non-stick spray. I use a glass dish. Combine berries with sugar and mix. Spread on bottom of 9 x 13 inch baking dish. Sprinkle cake mix evenly over berries. Break up in lumps.  Melt butter and pour evenly over top covering all of the dry mix. I usually have a few dry spots but it works out fine.

hallowen & early nov 15 045

Bake for 25 – 35 minutes or until it beings to turn golden brown. I cooked for 30 minutes.

You could use one or the other or mix in blueberries or use blueberries. I did not use in other spices but you could add some cinnamon, allspice or nutmeg.

This is my traditional dump cake recipe.

1 can crushed pineapple

1 can cherry pie filling

1 cup brown sugar

1 cup pecans, chopped

1 box yellow butter cake mix

1 cup butter melted.

Dump or layer in 9 x 13 caking dish and bake for 50 minutes at 350.  Same as the other dump cake.

Both are really yummy and a great as a dessert with a big scoop of vanilla ice cream!  Easy peasy as Rachel would say!  In fact, I think she can help me make this one day! And I am thankful to be able to share recipes and the love of cooking with her and you!

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Thankful for Rachel’s Opportunities

I haven’t had a chance to write much about Rachel’s sophomore year. I know many of you read in order to keep up with her.  Many of you read for ideas on how to make inclusion work in the parameters of school, community and life. I thought you were due for a little update on Sophomore Rachel, and I want to stay in line with my goal of giving thanks this month.

It has been a busy fall. Between school, jobs, task forces, church, volleyball, CYT (Christian Youth Theater), Razorback football, Down syndrome walks, church — well, I think the idea is clear. The past week to ten days has been a different kind of busy as Rachel prepared for a Shakespeare monologue and prepared to audition for her first high school play sponsored by her school.

Volleyball banquet. The manager and the coach.

Volleyball banquet. The manager and the coach.

Memorization is very difficult for Rachel. It is for many people but memory issues are commonly associated with Down syndrome. That said, she can recite many scenes from Shrek and High School Musical. She can remember when I had a meltdown in a store (word for word) and when her daddy busted her for not following the rules at a church event when she was seven. That was nine years ago and she can still recite the event in detail.  I don’t think she has selective memory, but I do find it a little uncanny that she can remember tiny details of certain things and others go right over her head. I am known for having a good memory, yet I would struggle to tell you how to do an algebra problem though. Her English teacher, who is totally awesome, sent me a message and said they would be choosing between three Macbeth monologues, and she wanted me to know so Rachel would be able to get started. Rachel had to do two Shakespeare monologues last year in drama class. I still remember my sinister thoughts when the acting teacher said he thought Rachel could memorize most of what was required. He really wanted her to try. I have to admit that Jonathan and I were both surprised. While she was no Richard Burton, she did pretty good.

So here we went on the Macbeth piece. We started by taking a picture of it and putting it on her iPad and iPhone. That way she could practice if she hasd free time. Then, we wrote the first two lines on her dry erase board in her room. This is where we write things she needs to practice like choir music and audition pieces. Each day we added a line or two on the dry erase board until all the lines were there. We’ve had fun listening to her read Macbeth. She has been reading it from her iPad and she tries to get into a British accent and adds drama. It is quite entertaining. The first few lines of the monologue she did the same way with great enthusiasm. For some reason, lines five and six just didn’t come to her. It was like a psychological block. As she continued to learn it and practice she would often skip these lines. When we prompted her with them, her cadence would be totally off and she would mess up the remainder of the monologue. In the final day or two before her recitation, we didn’t prompt her on those lines. She had a few others spots where she stumbled but she worked very hard. I would hear her in her room and then peek in to see her sitting by the dry erase board closing her eyes tightly and trying to say the words.

She did her recitation on Wednesday. Her biggest disappoint was that because school was closed Tuesday for the World Champion Kansas City Royals Victory Parade and Celebration, she didn’t get to do her monologue for the whole class. In order for the class to stay on schedule the teacher changed it to an extra credit assignment and students performed monologues for her. Rachel is a diva and she does love a stage. This is the message form the teacher:

“Rachel performed her monologue yesterday and she was amazing!! I loved how she had actions with the specific lines and was extra dramatic. She makes my English teacher heart happy =).”

That made mom and dad’s heart happy. She did her best and it wasn’t perfect. But I think it is a great example of how we worked together with her teacher to challenge Rachel, and she was successful. Having a good teacher is something to be thankful for in itself.

The other major thing happening this week was Rachel’s audition for Grease at her high school. Rachel was in one Middle School play (Guys and Dolls) and she was involved in community theater in Memphis. Most of her shows have been through the gift of Christian Youth Theater though. She really wants to be in a show at her school and has worked for months. She loves her school so much and has amazing school spirit.  We wanted her to wait until she had a year behind her before she auditioned. We spoke to the theatre director and determined this would be a good time to audition. They could pick any song and she picked Good Morning Baltimore. Her wonderful voice teacher, Ms. Phyllis, worked and worked with her on her piece. She practiced and practiced and practiced. She worked on her dance moves. In anticipation of the audition, our talented friend Jentry did some private dance lessons with her. Our amazing friend Andrea was also trying out for Grease, and she was Rachel’s buddy at auditions. I’ve blogged about Andrea before and I will again, but I will just say that amazing is not a strong enough adjective to describe Andrea.

Andrea helping Rachel with dance steps for The Prince is Having a Ball.

Andrea helping Rachel with dance steps for The Prince is Having a Ball.

Grease came out when I was in high school. It is one of those pop culture shows that people love across generations. Rachel attends a school of 2,100 students that has a strong theatre program. There are lots of talented kids and lots of kids who want to be in the musical production of Grease. As we always do before any audition, we talked through all of this. We told her that she might not make it. Lots of talented students and not enough spots for everyone. We discussed that the important thing was to do her best. We talked about the fact that if she didn’t get a part, God had a different plan. We discussed how it is truly an honor to have the opportunity to try out for a show and to get any part. She agreed. Auditions were Monday. Call-backs were posted and Rachel didn’t get a call-back. This doesn’t mean she wouldn’t get a part, but we used it as another opportunity to remind her about the very real possibility that she wouldn’t get a spot. She has had a good attitude all week but her self-talk has been on warp speed. We have overheard the discussions.

I picked her up at school and the cast list had just been posted online. I told her to wait to look at the list until we were together. She read through it and stopped at each person she knew and commented on how excited she was for them. Then, she came to the crew advertisement and she looked up at me with sad eyes. I said, “Honey, you did not make it.” As is her way she started reasoning that it was okay and that she was really happy for her friend Andrea who got the lead!  And her friend Kylie who is Rizzo and on and on. When we got home, she went straight to her room. I gave her a bit of time to herself, and then I checked on her. She said, “It’s okay. I texted Andrea. I’m so happy for her. And Cody (CYT Director, teacher and actor) told me if I didn’t make Grease, there is always another show. There is always another show mom.” I smiled and fought back own tears.

Rachel in the CYT Grease Class Beauty School Dropout.

Rachel in the CYT Grease Class Beauty School Dropout.

I’m a realist. I knew it was a long shot that Rachel would get a part. She wanted to try out and we put in place what we could to help her to do her best. And I think she did do her best. They have an enormously talented cast and she will go and be the first one up for the standing ovations. She will try out for a CYT winter show and hopefully get a part in that. Like everyone else, she will move on. This is one of those parts of life that we all deal with whether is a show, a sports team, a job or some other thing that we want but don’t get chosen for. While I would love to have seen that beautiful, infectious smile on that stage, I get to see it on the stage of life every day.

On this November day I am thankful that Rachel has these opportunities.  Lots of other kids with and without Down syndrome don’t have these opportunities or aren’t able for whatever reason to be a part of so much. When we are busy, my friend Theresa who also has a teenage daughter with Down syndrome often says, “Aren’t we blessed that our girls can do so much and have so many amazing opportunities?”

Yes, yes we are blessed.



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I Don’t Want to Lose My Hair

My dear friend is recovering from breast cancer. Originally they thought she would not need chemo. Plans change.  She has beautiful hair and has since I first met her about 27 years ago. She said to me, “I know it’s silly but I don’t want to lose my hair.”  I told her I don’t think it’s silly at all. She is a kind person and a devoted Jesus follower. She is thankful she found her lump through self-exam. The mammogram missed it. She is thank for good healthcare professionals. She is thankful that it appears she will live to see all of her children graduate high school and college. We are all terminal. She understands that all too well in a year when she lost her own mom. She is thankful for a loving husband, a beautiful home, good friends and a great life. She still doesn’t want to lose her hair. I don’t understand that exact feeling, but I do understand that sometimes deep down inside, no matter how thankful we are and no matter how strong our faith, no matter how great our lives –  we just don’t want have to experience certain things. Having faced a few of those occasions in my own life, I get that. We suck it up and we do it anyhow though. Doesn’t mean I have less faith or I am less of a person. Sometimes you just do what you gotta do. Sometimes you don’t like it and you don’t want to, but you do.  As I sometimes tell students, you can always choose how you will play the hand you are dealt.

I’ve been thinking a lot about gratefulness and thankfulness lately. I think being grateful and thankful are some of the most important character traits. I have been pondering this for a while and not just because it is November which is when everyone is supposed to be thinking about giving thanks. I think the reason is because I am part of a very entitled culture. You can be rich and be grateful. You can be poor and be thankless.  But we do live in a very self-indulgent time. I really feel old when I say this, but I just think about how I grew up and the culture I am now a part of and trust me, I live in a very self-indulgent and entitled culture.

So for the month of November, I am going to try to focus my blog on some of the ways I am thankful and on some things for which I am thankful.  Today, I am thankful for chemotherapy, radiation, medicine and doctors and the staffs committed to administering it. I am sorry my friend and others lose their hair during that ordeal and for the other associated side effects. I am so thankful they will live, and we will laugh together and call the Hogs together many more times. I am thankful for my friends who have lived to see so much because of modern medicine. I am thankful for the West Clinic in Memphis and the good doctors who treated my husband Jonathan when he had cancer. I am thankful to celebrate his being 16 years cancer free. I am thankful that Rachel gets to experience the best daddy a little girl could have largely because of modern medicine.  Mostly because of God’s goodness and grace. I struggle with that concept, too.

ar baseball daddy dance running w daddy in lr

I am thankful for my friend. I, too, hope she doesn’t lose her hair. I know she is covered in God’s love and embraced by loving friends and family. She’s been through a lot lately so I’m really hoping. And I’m really thankful.

There is a song I like to sing that says, “Give thanks with a grateful heart. Give thanks to the Holy one. Give thanks because He’s given Jesus Christ His son. And now let weak say I am strong, let the poor say I am rich because of what the Lord has done for us. Give thanks.”

Give thanks.



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The Strength of Disabilities in the Workplace

Today, I am proudly sharing my husband’s blog he wrote for his employer, Sedgwick.  Sedgwick has supported our family and has been a strong supporter of community organizations that serve individuals with differing abilities.  It is National Disability Employment Awareness month and Sedgwick has been offering some educational and personal perspectives on the subject. Jonathan’s blog mixes a little of both. I hope you will take a few minutes to read it.

He does talk about a certain young lady who wants to live in a pink house who also wants what all of us want: to have a job, contribute, and have value.

fashionability rachel & daddy

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Down Syndrome Awareness in 21 Images

I think it’s great that Marty McFly went Back to the Future on this 21st Day of Down Syndrome Awareness Month – 2015! Very thoughtful of Marty and Doc Brown. In honor of Back to the Future Day and Down syndrome awareness, I thought I would share some of my favorite pictures and thoughts about this journey that illustrate the rich and full journey of Rachel’s life. I hope you enjoy.  I miss baby Rachel but I sure do enjoy Sassy Rachel (most of the time) and the joy in this journey! These are not in order, but my all-time favorite is at the end of the blog.

If you are reading today and you have a prenatal diagnosis or a newborn or a little one with Down syndrome, I say congratulations. We had a prenatal diagnosis and it wasn’t what we were expecting, but what a journey it has been. Not long after we got our prenatal diagnosis, I was out for a walk. I was talking to unborn baby Rachel and I said, “I don’t mean to hurt your feelings. It’s just that you aren’t what we were expecting.” Then, I giggled and said, “You are probably thinking that makes two of us because you’re not what I was expecting either!”  Humor is a good thing.

This is many folks very favorite baby picture of Miss Rachel.


These two sweeties! No wonder she’s been boy crazy forever!



Sweet picture at Buddy Walk 2004 by our friend Greg Battistelli from Faith Baptist Church. Our Faith family was amazing – joining Rachel’s team, cooking hot dogs, cleaning up and loving us through so much!

Sweet picture at Buddy Walk 2004 by our friend Greg Battistelli

Favorite picture at a Hog game with Poppie!

Favorite picture at a Hog game with Poppie!

What can I say? These two. This was featured in the Down Syndrome Association of the Mid-South brochure.

What can I say? These two.

Beautiful dancer

Beautiful dancer

Spring Sing at her Inclusive Preschool.

Spring Sing at her Inclusive Preschool.

Upward Cheer. She has great spirit.

Upward Cheer. She has great spirit.

Ultra man’s routine – crossing the finish line with his girl.

Ultra man's routine - crossing the finish line with his girl.

Taking the Pledge with STUCO friends

Taking the Pledge with STUCO friends

He Makes Beautiful Things.

He Makes Beautiful Things.

Ms. Stef represents all the teachers, paraprofessionals & therapists who have invested in, loved and continue to embrace this girl!

Ms. Stef represents all the teachers, paraprofessionals & therapists who have invested in,loved and continue to embrace this girl!

I love how Congressman Yoder is looking on as Rachel speaks to the legislative committee. They have a mutual adoration society. Advocacy has been a major part of our lives.

I love how Congressman Yoder is looking on as Rachel speaks to the legislative committee. They have a mutual adoration society.

Backstage taping Just Like – You Down Syndrome with Savanna.

Just Like You Down Syndrome with Savanna.

8th Grade Dance

8th Grade Dance

Blue Valley Baptist friends are THE BEST! Selfie with dad.

Blue Valley Friends are the BEST! Selfie with dad.

Rachel reading to sweet Baby Annalise. The doctors said Annalise would only live hours. She is eight months old. He makes beautiful things.

Rachel reading to sweet Baby Annalise. The doctors said Annalise would only live hours. She is eight months old. He makes beautiful things.

A girl and the best daddy in the world

A girl and the best daddy in the world

Rachel was elected to the WPA Court. This young man pulled Rachel into the group as the game ended and they were singing the Alma Mater. Inclusion works.

Rachel was elected to the WPA Court. This young man pulled Rachel into the group as the game ended and they were singing the Alma Mater. Inclusion works.

Disney Cruise Best Week Ever.

Disney Cruise Best Week Ever.

This is my all-time favorite picture of Rachel taken by our dear friend Elizabeth Duncan.


This was Rachel’s first stage production at the Bartlett Performing Arts Center. She was six and portrayed a magical baby doll. She even had a speaking part, “Mama mama.”  I think it is a beautiful picture but more importantly it represents so much of who she is and who I am. To find out more, you’ll have to check out Auditions: Paralyzed by Fear! Personally, I think it’s a must.

Down Syndrome Awareness month or Down Syndrome Acceptance month, whatever you want to call it. For me today is just another opportunity to stop and reflect on a life being lived to the fullest and that I get to be a part of it! Thank you Rachel!

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Down Syndrome Acceptance – The Power of Inclusion

It is hard to believe that we met George 10 years ago.  Many of you know the story of George but many don’t. During Down Syndrome Awareness/Acceptance Month, I always re-share the story of George and Rachel because it is an inspiration and because it gives you tools for your journey.  Today is George’s 16th birthday so Happy Birthday George!  I hope you enjoy reading it as much as I enjoy sharing it.

The Power of Inclusion – George!

George is one of Rachel’s life friends, and George is mentioned in almost all of my presentations about Down syndrome. George and Rachel had the good fortune of landing in Mrs. Brewer’s kindergarten class. When I inquired about positive peer models, George’s name was the first one out of Mrs. Brewer’s mouth. “He just seems to have a knack for helping Rachel when she needs help and just being her friend.”  George’s mom signed the family up to come to the Buddy Walk® that kindergarten year. None of us knew it would lead to a lifelong friendship.  Here’s their picture from the walk and it was one of the photos used in NDSS Times Square Video promoting Down Syndrome Awareness the following year.

george&rachel best 05

From there, Rachel and George just built a precious friendship. Our families became friends.  George was included in some of our outings, most notably attending Red Birds (Memphis AAA Baseball team) games with us.  From time to time, we had the opportunity to sit in one of the boxes. George and Rachel loved this. They loved the food- especially the ice cream in the plastic baseball caps. George’s mom always wanted him to bring money and take Rachel on some of the rides and play some of the games. Rachel was always proud because she encouraged George on some of the rides that made him a little nervous. George had Rachel over to watch the original Willy Wonka movie. She still associates the original movie with him.


Each year Mrs. Brewer’s class had a Christmas play. George was Santa Claus and Rachel an elf. She still talks about him in his Santa role and she still imitates his “ho, ho, ho!” George and Rachel walked together at kindergarten graduation. grad george & rach

In 1st grade I came and did my little song and dance on the Buddy Walk® and a peer presentation on Down syndrome. The teachers asked the children “How can you be a good friend to Rachel? “ George’s hand was first up and he said, “When the kids on the playground don’t understand what she is saying, we can help them to know what she is saying.” There are many George and Rachel moments. He was on her walk team with his family beside him every year we lived in Memphis, and his mom usually donates to our team here as well. That’s’ the kind of folks they are.

But there is one story that summarizes George and Rachel best.  When we learned we would be moving to Kansas, it was just before school would start.  It all happened quite fast.  We had a going away party and then we did some individual outings with some of Rachel’s closer friends.  And of course, we had to go to a Red Birds game with George. This was only a few nights before our departure.  When we got back to George’s house, he told Rachel good-bye and they exchanged cards, gifts and hugs. We gave George and Rachel’s friend Sarah K. both copies of Max Lucado’s “You Are Special.” As I often do, I wrote them notes about how special each of them is and what I saw in them that God wanted to use for the rest of their lives. I thanked them for being such wonderful friends to Rachel.  I told them that I hoped they kept these books forever.

Then it was time and I walked George into his house to say good-bye to his family.  As I turned to tell him good-bye and hug him, he threw his arms around me and cried, “You take care of Rachel because I won’t be there to take care of her.”  Tears streamed down my face. I mumbled thank you and hugged him tightly.  I don’t know if George remembers it, but it was one of those “aha” moments in my life.   

In Rachel George sees his friend.  He doesn’t see Down syndrome. He sees his responsibility to help if needed or wanted. He sees someone who is capable. George was the smartest kid in the class. He never babied Rachel. He friended her before Facebook! He respected her and gave her dignity in the way he treated her.

I do expect George will be CEO of a company someday.   And you know what?  He will hire someone with Down syndrome.  Why? Because George gets what most of people never get. He sees Rachel for who she is and for her abilities. The power of inclusion is that inclusion does way more for those without diagnosed disabilities than it does for those with disabilities. I bet George would tell you that, too.

The world needs more George’s.

Note: There are some other great George’s in Rachel’s life like Sarah K., Allie, Hanna, Andrew, Andrea and more. Watch for stories about how the world needs more of them, too.




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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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