5 Reflections from Church Camp Inclusion

Rachel & her buddy Alli. Alli just graduated. We will miss her at Olathe South during lunch at in student activities at church.

Rachel & her buddy Alli. Alli just graduated. We will miss her at Olathe South during lunch & in student activities at church.

As promised and as I most usually do, I want to share reflections from church camp last week. Primarily I’m going to share the week in pictures but a few points.

  1. Rachel is fully included with her church group and with others at Centrifuge. She is fully included at our church to begin with though. We moved here when Rachel was in 3rd grade. One young lady told me that she didn’t remember a time when Rachel wasn’t here.  No different from any of the rest of us. Deep friendships and relationships are often the result of life experienced together. Inclusion works.
  2. Rachel invited her friend to camp. Her friend had a stroke when she was little. She has some physical limitations and some cognitive delays,too. Students and adults stepped in and welcomed her, helped her & included her just like they would anyone else. Inclusion Works.
  3. The Centrifuge staff is awesome. More than half of them found me to tell me how much they loved Rachel. They also told me they love watching how our church’s students loved on Rachel and treated her just like everyone else. They were impressed with their level of encouragement and understanding of one another. So am I. One staffer told me her best friend back home has Down syndrome: Inclusion Works.
  4. My boy crazy girl found some very cute boys to talk with.  I cringed.  Just because they are church boys doesn’t mean they will be kind but these boys were. I was chatting with them one day and they said, “We have a good friend at our high school back home who has Down syndrome.” Inclusion works.
  5. We are all a work in progress. Adults can learn a lot from teenagers. Inclusion works.

Rachel & her buddy Hanna.

Rachel & her buddy Hanna.

Best Girls Ever: Fun Girls!

Best Girls Ever: Fun Girls!

Mia & Allie in action!

Mia & Allie in action!

Dad being contemplative?

Dad being contemplative?

What is dad doing?

What is dad doing?

Rachel's Bible Study Leader Tyler.  How does she always manage to get on stage?

Rachel’s Bible Study Leader Tyler. How does she always manage to get on stage?

Pie Night with my pie helpers. They only volunteer so they can eat pie I say.

Pie Night with my pie helpers. They only volunteer so they can eat pie I say.

Have to have great adults for great church camp.

Have to have great adults for great church camp.

Rachel's adult counselor Abbie. Kiersten's birthday pickles. Rachel loves Abbie and thinks she is cute!  Abbie is an Olathe South graduate too!

Rachel’s adult counselor Abbie. Kiersten’s birthday pickles. Rachel loves Abbie and thinks she is cute! Abbie is an Olathe South graduate too!

Students cheering friends.

Students cheering friends.

Rachel with her friend Justin. You may remember he was part of the double date adventure at WPA and DSG Prom!

Rachel with her friend Justin. You may remember he was part of the double date adventure at WPA and DSG Prom!

They call this pose "The Rachel."

They call this pose “The Rachel.”

My favorite text ever maybe. I have to admit that the one from Rep. Jenkins office that said “The President just signed the ABLE Act into law. Merry Christmas Jawanda.” That one ranks pretty high.

A message to Rachel from a friend. Inclusion works.

A message to Rachel from a friend. Inclusion works.

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Changing Perceptions One Church Camp at a Time

We are headed off to Centrifuge Church Camp this morning.  We love church camp and I have lots to tell you about when we get back – church camp and a job, too! Today, I am just going to re-post the blog I wrote after our first trip to Centrifuge three years ago. Pay special attention to the adult sponsor who owns a business. We are looking forward to an awesome week!

Originally Posted July 3, 2012

Changing Perceptions One Church Camp at a Time
I now have my first Centrifuge Church Camp behind me. To my husband and our Calvary kids: You are right. It was super awesome. Twenty years ago when Jonathan first went to Centrifuge camp, we didn’t have Rachel. In the first four moves of our life together as we searched for a church, we weren’t looking for children’s/youth ministries much less an inclusive church for Rachel. That all changed when she entered our lives. Since 1st grade, Rachel has been going to overnight camps. Since moving to the KC area, I’ve always gone to camp as a leader. Church and church camp are definitely not exempt when it comes to needing to learn how to be inclusive. Usually, it is not intentional but it still happens and it stings whether it is intentional or not. I’ve watched kids be alienated by the actions of other children in the church. Worse yet, I’ve seen adults allow it to happen. Though ashamed to admit it, until Rachel came along I was probably not as alert to this as I should have been. At one camp I cried myself to sleep after Rachel was the only child in her group left out of a talent act. I put that behind me and pressed on because I knew I had to trudge on for Rachel and for the bigger picture.

So this year it is off to Centrifuge. This is a longer camp and facilitated by staff outside of our church. I completed a “special attention” form to give them a heads up that a young lady with Down syndrome would be there and how they might help her (10 seconds to process requests, extra help finding a chapter in a book in the Bible and writing down notes and this is best addressed with a peer helper). Camp was a huge success and not just for Rachel but for everyone. Rachel managed to give a dissertation on respect at their first Bible study session. The leader came to me and I told him he needed to treat her like the other kids, pull her aside and gently discuss not monopolizing the conversation and letting adults deal with such issues. Apparently, Rachel perceived someone was disrespectful. To my knowledge she only had one incident where she was separated from her class but God provided. To the rescue was her friend, babysitter, protector and cheerleader Julia. Julia appropriately scolded the group and leader for not knowing where she was. As plain as she has ever told us anything, Rachel told us that she learned in Bible study that we should pursue God and He pursues us because He loves us and wants us to be happy. So far so good I say.

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I’m not exactly sure what happened, but five different girls came to me after the first Bible study session and told me a girl from another church was mean to Rachel. Got in her face and Rachel cried. They said they didn’t think Rachel did anything but she (Rachel) thought she had and she tried to apologize and the girl started snapping her fingers in her face. Now, I wasn’t sure the “evil eye” would be appropriate here but it didn’t matter. One of our shy, quiet girls intervened and told the young lady that this was not acceptable behavior. This young lady told me that she remembered from Sunday school that when God commands us to do something it doesn’t matter if we are shy and timid, we have to do it. She did. There were no more problems.

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Rachel participated in everything: all recreation, worship, (kudos to SoloFlight), the soccer track and drama track. She was in the drama portion of the final worship activity. She entered the belly flop contest and with the coaxing and assurance of her Julia and her new friend Tanner, she belly-flopped not once but twice and was declared the winner. The other top finishers were gracious. Rachel was brave. The crowd was chanting Rachel. She was energized.

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Three of the adults on the trip who did not really know Rachel prior to the trip told me several times how impressed they were with her. They also commented on how well our kids did with Rachel. “She is just one of them.” That was true this week. The kids her age treated her like one of the gang. The older kids are always good with Rachel. She loves them and they love her. They have a kind of maternal sense it seems. They want to protect her and love on her, and they tell me they learn from her. Of course I take every opportunity to educate and lobby for inclusion. One of our adult sponsors owns a business and she told me she was pretty sure Rachel could work at their business when she is older. She just offered this up – no interrogating from me. I told her she had no idea how much that meant to me. I don’t know if it will happen but just the insight that she had into Rachel and that she is able.

katelyn &rach camp12
Several FugeCamp staffers told me how much they loved Rachel and a couple of them seemed a bit surprised when they said, “She did great. She did everything. She just did what the other kids did.” I piped in and said, “of course she did. She has always been included.” A bit of pride and a bit of sadness. Sad because those comments are an indicator of the low expectations for kids with Down syndrome and developmental disabilities. I know they didn’t mean it that way. I knew they meant it in the nicest way and most the most complementary intent. I know if I didn’t have Rachel I would not see the world as I do. So I pushed the sadness away and reminded myself that for last week and for this day, we continue to change perceptions. This time, one church camp at a time.
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Thanks to the Blue Valley Baptist youth who were the best group of kids I have ever had, and that includes a bus breakdown on a HOT day! That is saying a lot because I’ve had some good kids in my journey (and some stinkers!). Thanks to our incredible church staff, the adult sponsors who have brightened my world, and the FugeCamp staff. You rocked and have endeared yourselves to one young lady named Rachel and her momma! To God be the Glory for all the great things you will do in His name.

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Rachel’s New York City Sweet 16 Adventure

My last blog was 16 things I love about Rachel because we were off to NYC to celebrate her Sweet 16 and celebrate we did.  We joke that Rachel leads a Forrest Gump type life. One of our friends says except this stuff really does happen to you guys! For my Facebook friends, I know you’ve had Rachel overload – sorry. Today, I’m mostly just going to post some pictures but I do want to give you a little perspective. Note the dates on some of the pictures.

This was our first trip to NYC in October 2000. First time on the NDSS Buddy Walk Times Square Video. The walk was in historic Central Park and the twin towers can be seen in the background on some of our pictures. This was Rachel’s first appearance on the Today Show with Al Roker, too.

Al Roker talked to Rachel and we went to the NBC studios and got this shot back in 2000.

Al Roker talked to Rachel and we went to the NBC studios and got this shot back in 2000.

NDSS NYC Buddy Walk 2000. First trip to Central Park.

NDSS NYC Buddy Walk 2000. First trip to Central Park.

Next trip was summer 2008. Her daddy had a business trip and it was just before we learned we would be moving to the Kansas City area. American Girl, Dylan’s Candy Bar, Toys R Us Ferris Wheel and of course, the Today Show with Al Roker were some of the highlights. And Mary Poppins.

American Girl with Sally & Marisol 2008.

American Girl with Sally & Marisol 2008.

 

Dylan's Candy Bar 2008

Dylan’s Candy Bar 2008

Dylan's Candy Bar 2015

Dylan’s Candy Bar 2015

I blinked and she turned 16. She continues to say she wants to live in NYC. It’s kind of like sports for me, it is in her soul.  This trip was amazing. Rachel brings out the very best in people. Some generous friends and great tips allowed us some “super amazing” opportunities. Too many highlights to mention here but a few pictures and captions to give you an idea.

Water front 2008.

Water front 2008.

Waterfront looking out to Jersey from restuarant.

Waterfront 2015

 

Ground Zero 2008.

Ground Zero 2008.

 

Freedom Tower

Freedom Tower 2015

Central Park Carousel 2008

Central Park Carousel 2008

Central Park Carousel 2015

Central Park Carousel 2015

Times Square 2008

Times Square 2008

Gotta call the Hogs on Times Square for our friend Bobby Wernes and our OmaHogs!

Gotta call the Hogs on Times Square for our friend Bobby Wernes and our OmaHogs!

Julliard Fountain. We had just met a Rockette.  Rachel trying out her kicks.

Julliard Fountain. We had just met a Rockette. Rachel trying out her kicks.

Pizza with Rachel's new buddy the lovely actress Jene Hernandez.

Pizza with Rachel’s new buddy the lovely actress Jene Hernandez.

Schmackarys - where the stars come after shows. Great cookies!

Schmackarys – where the stars come after shows. Great cookies!

At Schmakary's Bakery where we met William Ryall, Elphaba's dad in Wicked.

At Schmakary’s Bakery where we met William Ryall, Elphaba’s dad in Wicked.

Singing Happy Birthday to Rachel at Ellen's Stardust Diner.

Singing Happy Birthday to Rachel at Ellen’s Stardust Diner.

Surprise flowers & balloons from friends waiting in the room - how special!

Surprise flowers & balloons from friends waiting in the room – how special!

Birthday dinner at The Palm.

Birthday dinner at The Palm.

Birthday cake at the Palm. Oh my!

Birthday cake at the Palm. Oh my!

The Main Event: Wicked on Broadway. Rachel said it was perfect.

The Main Event: Wicked on Broadway. Rachel said it was perfect.

Wicked Pose with the Lovely Desi Oakley, Wicked Ensemble.

Wicked Pose with the Lovely Desi Oakley, Wicked Ensemble.

Gershwin Stage following Wicked. Thank you Desi Oakley.

Gershwin Stage following Wicked. Thank you Desi Oakley.

Getting the scoop from Desi Oakley about what goes on backstage.

Getting the scoop from Desi Oakley about what goes on backstage.

Rachel in the backstage hallway after Wicked. She had to Strike the Pose.

Rachel in the backstage hallway after Wicked. She had to Strike the Pose.

Radio City Music Hall Tour was awesome.  Meeting a Rockette was Super Awesome!

Radio City Music Hall Tour was awesome. Meeting a Rockette was Super Awesome!

Now what are we going to to for the rest of our lives? More about that – tomorrow!

 

PS – Please share this with anyone who thinks a person who is “afflicted” with Down syndrome.

 

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Baby Rachel’s Sweet 16; 16 Things I Love

Rachel is celebrating her Sweet 16 in NYC.  “Wicked,” “The Lion King,” and much more on the schedule. It really does seem like just yesterday we were anticipating her birth.We had a prenatal diagnosis and she looked healthy on her ultrasound. The moment she popped out she screamed at the top of her lungs as if to say “Hello world! I am here and I’m going to sparkle.” Then, I blinked and she is 16 years old.

In honor of her Sweet 16 I thought I would share 16 things I love about my Rachel.  They may or may not be in any particular order so pay attention!

  1. I love that million dollar smile.                                  beach 09 daddyrach - Copy
  2. I love the way she says”baby.”  I can’t imitate it. It’s just the cutest thing ever.
  3. I love to hear her read. Jonathan says the first time she read a book to him is one of his favorite memories. Me too.
  4. Most of the time -I love that she has sass, but there are those days. She is “sassy gal in training” you know.                                                                                cheeta belly
  5. I love her prayers. She is diligent and if she tells you she is praying for you she does. They can be so very sweet and telling.
  6. I love her stage presence. She lights up a stage. I’m the mom. Go asked anyone who has seen her on the stage.
  7. I love that she loves to dance. I am not a dancer. She has pure love for dancing and can often be found dancing in her room or the basement.    beautiful dancer 09
  8. I love her self-talk. It’s a window to her soul and great for parental spying.
  9. I love her laugh and sense of humor. She tries so hard to tell knock-knock jokes. She is fun and she is funny.
  10. I love her loyalty. I know of no one who is more loyal to her friends than this one. Once you are her friend, it is forever. She’s sees the best in people.
  11. I love how she loves to sing and she sings with great joy. Yes, she sings off-key. She seems not to care in the least. Every time I have cringed when I heard her above everyone else in the choir program and I do mean every time, God sends someone and usually several someones to me to say, “I love watching her sing.  She has so much joy.” True, she does make a joyful noise to the Lord.
  12. I love her independence. At times I loathe it, but it will serve her well in this world.                                                                                                        driving in her car
  13. I love her self-advocacy. She loves to tell people I Love My Life. She tells people about her amazing life. She is a leader. She told me she wanted to have speech again because people don’t understand what I say.
  14. I love that she loves Jesus and that he created her perfectly the way she is and that she doesn’t mind if people know that she is a Jesus follower.
  15. I love her persistence and work ethic. Rachel has to work hard to do most things. She has to work harder than the average person to make good grades. She has to work harder than the average person to stay engaged in a group. She doesn’t give up though. She has to overcome other people’s low expectations and that is no small task . She goes for the gusto and has big dreams.
  16. I love that she is mine and that God chose me of all the people in this whole big world to be her mom.  I have learned so much from her. I have learned so much because of her. She is easily the best teacher I have ever had.

mommy rach-finish-line-st-jude

Happy Sweet 16th Baby Rachel!  I sure hope the next 16 don’t go by as fast.

 

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Rachel & Her Razorback

This weekend we were able to travel to our beloved Fayetteville, Arkansas to watch our Hogs in the College World Series Super Regionals. If you know baseball or college sports, you will understand that this is a big deal. If not, you will just have to trust me. We had general admission seats out in the “Pig Pen.” No shade and it was, in the words of Rachel, “Smoking Hot.”  It is aptly called the Pig Pen. Crowded and smelly in that heat!

The Pig Pen at Baum Stadium. General Admission Seats.

The Pig Pen at Baum Stadium. General Admission Seats.

 

Our view for the championship game. Hot but great view.

Our view for the championship game. Hot but great view.

We were thrilled to connect with several sets of friends we had not seen in 20 years. We loved for them to meet Rachel and her to meet them.

cws paula and rachel cws calvary friends

God has blessed us with many wonderful friends along our journey. It was really fun to reconnect and share life.

cws peterson crew

We stayed with dear friends from our graduate school years.  I think you will agree that they have the most beautiful view in Northwest Arkansas.

Looking out our friend's home. Most Beautiful View in NW AR.

Looking out our friend’s home. Most Beautiful View in NW AR.

Lots of “stuff” along the paths of all of these friends and our lives but we all still love Jesus and our Hogs.

Rachel loves to cheer for the Hogs but her allegiance is to one specific Hog: Bobby Wernes, 3rd baseman for the Arkansas Razorbacks. I wrote a blog about him a few months ago, “One of the Good Guys #BobbyBandwagon.”

 

Rachel. Bobby & Bobby's sister. Game 1.

Rachel. Bobby & Bobby’s sister. Game 1.

After winning Rachel and her favorite player, Bobby!

After winning Rachel and her favorite player, Bobby!

As Bobby sought out Rachel in the crowd, she was the envy of the little boys and girls crowded about wanting autographs! As best I could tell, Bobby and his team mates were gracious to honor all requests. Thought some of you might enjoy this video of Bobby and Rachel after the Hogs won the Super Regional!

Kudos to our OmaHogs and to Rachel for being a trooper in the heat!

cws rachels sign

 

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Rachel’s Grade A Freshman Year

Rachel’s grades came a few days ago. I already knew her grades because I follow online. However, there is something powerful and more real about feeling and touching the actual grade report. Rachel takes great pride in her school work and making good grades. As evidenced here with her all A’s report, she is proud of her freshman year.

rachel end of year report card

end of year grades up close

I have blogged about the positive aspects of her freshman  year. I’ve described our prep and doing all we could humanly do to prepare for success.  We are more concerned with her working hard and doing your best, but Rachel learned quite early that those who made good grades got to be “on the stage” and she is a stage girl. Rachel has major accommodations and modifications. Still, she works very hard. We are fortunate to live in a school district where she is recognized based on her abilities.

Today, I want to summarize some highlights from her from her freshman year starting with the academics. I’ve described some of her teachers and the great job they have done in “making it work” for Rachel. English and biology are the two classes I would say I am most proud of Rachel. I’ve written a lot about her English teacher. You know the one who reached out to us and said “I’ve never taught a child with Down syndrome. Help me.” Rachel read “Of Mice and Men,” parts of “The Odyssey,” “Romeo and Juliet,” and “To Kill a Mockingbird.” Rachel averaged over 90% on all of the book tests. She will tell you she didn’t care for “Of Mice and Men” and “Romeo and Juliet” was her favorite. No surprises. She can also have a decent conversation about these books with friends. Her final in English was 76 questions over “To Kill a Mockingbird.” Rachel missed two questions.

Biology is hard. At the beginning of the year her teacher sent home a supply list. Graph book was on the list. I nearly had a panic attack. With Rachel’s visual perception issues, I thought we might be in for a long year. Never have I been more wrong. I emailed the teacher and kind of said “Are you sure?” She said, “I want all my kids to have the same supplies. The kids with modifications already feel like they are different and I don’t want them to feel more different because they have different supplies.” That email told me the year would be okay. This biology teacher did her best to include all students in a meaningful way. She challenged Rachel. Rachel learned. Rachel made an 84 on her biology final. These are some of the things she needed to know:

  • Complete a Punnett Square.
  • Label the phases of mitosis.
  • What is cytokinesis?
  • Know the following terms: Heterozygous, homozygous, trait, dominant, recessive, genotype, phenotype

I was challenged with the questions but because her teacher gave us what we needed and gave us enough time, we were able to help Rachel prepare. I am thrilled with her 84. She  got her A in part because she did an extra credit project. A poster about a “vampire bat.” Her choice because she thinks they are cute. Rachel would tell you this class was really hard for her. She was challenged and that’s a good thing. One more thing about this teacher. Back in February at parent teacher conference she told me that she would be taking a group on a trip to Costa Rica. She said that she thought Rachel would enjoy the trip. She said that it was expensive but she was going to send me some information. I wanted to throw my arms around her and hug her on the spot. This is a teacher who truly gets it. Even if Rachel had not gotten that A in biology, this was a grade A teacher and a grade A experience for Rachel.

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A few other thoughts and highlights from Rachel’s Grade A Freshman Year:

  • Served as 9th grade girls volleyball manager.
  • Learned two short Shakespeare monologues.
  • Served on Student Council as a member-at-large
  • Assisted with the inaugural “Pledge to End the R-Word” event for school and district.
  • Elected to Winter Court.
  • Navigated the halls and 2,100 students with great success.

While I am very proud of Rachel’s grade report, my intent today is not to “brag” about her making all A’s. I am very proud because even with major accommodations and modifications, parts of school are very hard for Rachel. At our house we all work hard.  I also don’t want you all to think this is all a cake walk and everything just falls in to place and is easy. My intent with today’s blog is to assuade fear for some of you with children headed to high school. I also hope to give you some tools in your tool box to assist in your inclusive journey. There are a lot of behind the scenes events and some train wrecks unknown to Rachel or you as readers. Nothing is perfect. Hang on to your high expectations and persevere.

Finally, I would share a couple of closing thoughts. One: Communication is key. Back and forth communication via Rachel’s iPad and emailing directly with teachers are essential for us. Second, adequate prep time and understanding how information will be presented to Rachel are also essential elements for Rachel’s success. Her IEP states that we get study guides and test format at least a week prior to tests and major projects. We in turn set up flash cards on her iPad and study. This has been a central key to Rachel’s learning.

While Rachel is very proud of her grades, Winter Court and STUCO, if you ask her what the highlight of her year was she would say: “I won the dance-off the first day of school!” That’s my girl! Hello Sophomore Year!

9th 1 day w mentor ASdance off 3

 

 

 

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Lifelong Friends in Different Packages

Happy Birthday Ben and Oksana!  Ben is Rachel’s first friend. I shared his sister Olivia’s valedictorian speech last week. She talked about Ben. As I have mentioned once or twice, Rachel and Ben met at the ripe old age of one and two weeks at Special Kids and Families Early Intervention program. At that moment an eternal friendship was destined. Since we moved to the Kansas City area seven years ago, Ben and Rachel don’t get to see each other much. Still, they have a connection. One of our week’s highlights is that we get to see Ben later this week. His student choir is going to be singing in the area. We are very excited at our house.

Our Early Intervention group, Ben's Angels. This picture was on Times Square.

Our Early Intervention group, Ben’s Angels. This picture was on Times Square.

I have always loved this picture.  Captures them at that moment in time.

I have always loved this picture. Captures them at that moment in time.

I think it is quite fitting that Ben and Rachel’s friend Oksana have the same birthday. Oksana is Rachel’s sweet friend who will be a Junior at Vanderbilt. Rachel is planning a college visit there for her next spring break just so she can have a sleepover in Oksana’s dorm room!

oksana rachel ice cream date

We met Oksana at our local church when Rachel started Student Choir and Oksana befriended her. The rest is history!  I’ve blogged about Oksana a couple of times so today if you want to learn more about this remarkable young woman and the beautiful friendship of Oksana and Rachel, click here and read about The Sweet Sound of Inclusion! Rachel’s taking Oksana to lunch later this week and that is pretty high on the excitement list too!

Happy Birthday to two of the most beautiful people we know!

 

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Sibling Rocks with Valedictory Speech

I wasn’t going to blog today, but I can’t help myself. Our friend Olivia graduated from high school last week, and everyone needs to see her valedictorian speech!  I first met Olivia at Special Kids and Families. I don’t think she was quite three years old.  Special Kids and Families was our early intervention provider. Olivia was there with her mom, Becky, and brother Ben. Olivia was one of the peer models in the program. Her brother Ben happens to have Down syndrome.

ben&rachel01

As God had things planned, we met Ben and Becky on our first trip. Rachel was about a week old and Ben almost two weeks old. There, a lifelong friendship was forged. I am eternally grateful for Special Kids and Families and for our friendship with the Halvorson’s. Though we moved from Memphis to Kansas seven years ago, Becky and I talk several times a week and continue to provide support for the challenges and joys on this journey.

halvorsons

As you will see, Olivia is a very bright, articulate, talented and beautiful young lady. When she graduated 8th grade, she took her stage as the valedictorian and in an emotional speech talked about her brother Ben. Last week she had the opportunity with an even bigger stage to give a valedictory speech at her high school graduation. She could have talked about so many things. Olivia again chose to talk about Ben. She chose to talk about seeing people’s abilities. She challenged the audience not to look at the outside but to look at the inside and the potential. Well, you can watch the short speech here.

I could not be more proud to call a young person or a family friend. For all of you who have been told that this person with Down syndrome will be a burden to their siblings or what they can’t do, I say meet Olivia Halvorson. And don’t compromise!

olivia & ben alter

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Two Keys to a Successful Freshman Year

Rachel has been in “sophomore” mode for a few weeks now.  Right now, she has about two classes standing between her and her sophomore year but she has been reminding us that she will no longer be a high school freshman.

Last day 9th grade.

Last day 9th grade.

Rachel has had a great year.  I am tired and weary but Rachel has had a great year. Twelve years of there always being some issue has made me tired. I am tired of having to stay on top of things all the time. I am tired of low expectations. I am tired of train wrecks just when I think we’re all on track. I am ready for a break. But Rachel has had a great year. Rachel is happy. Since that is what really matters in the big scheme of things, for the purposes of this blog I will try focus on that.

A year ago now we had four meetings to spell out everything Rachel would need to be successful in high school. I knew that it was only on paper but felt pretty good about the plan. Some of it happened. Some did not. Two very important things did happen though. There are a lot of ingredients to success in anything but I’m going to give you of what I believe to be two keys to her successful year.

1st Day 9th Grade

1st Day 9th Grade

Alli (church friend) & Rachel Lunch 1st Day

Alli (church friend) & Rachel Lunch 1st Day

One was peers. Because Rachel has always been included at church, Christian Youth Theater, dance, Upward Sports and other community activities, Rachel knows a lot of people. These are the people who pitched in here and there. These peers are the ones who gave me that “We got it, Ms. Jawanda” text when I had no idea who was going to make sure her first day with 2,100 students went okay. Before school started the Student Council leadership pulled her in. I met the Student Council president because I went to the PTO meeting recruiting incoming parents of freshman. STUCO president’s mom is the PTO president. She immediately wanted her daughter to meet Rachel. It’s little things like this that help. I have documented many of these seemingly small gestures this year. The point is that if she had not been involved in and included in so many things in and out of school, I think she and I would have been kind of lost. Thank you peers.

Second, Rachel had great teachers. I have commented on this numerous times this year. Her teachers wanted her to succeed. Overall, they worked with us and with Rachel. Some needed a little nudge but they all joined in our shared our high expectations. Some pushed harder and gave her more challenges to help her push herself. Having teachers who will work with you when you have a page of accommodations and modifications is truly a key to success. The fact that Rachel works very hard helps, too. Rachel had teachers she truly loved and who loved her. Remember, my core belief is that good teachers teach all kids. I want to applaud Rachel teaching team, those who put that teaching team together with Rachel’s best interest at the center and the behind the scenes folks like social workers, counselors and paraprofessionals who pitched it to make things work for Rachel.

Last day with Ms. Rooney. Volleyball coach and Sophomore Case Manager

Last day with Ms. Rooney. Volleyball coach and Sophomore Case Manager

Last day with Ms. Feightner, Social Worker

Last day with Ms. Feightner, Social Worker

Ms. Brie, para who is off to become a Hospice nurse.

Ms. Brie, para who is off to become a Hospice nurse.

Even with good peers and exceptional teachers the year has not been perfect. And this side of the day I meet Jesus nothing will be perfect. It’s good to remember Hannah Montana’s song “Nobody’s Perfect” when dealing with human beings in any setting.

Yesterday, we had to do an addendum to Rachel’s IEP.  We had a very small group to “officially” take care of something. Rachel’s English teacher came as the general education teacher representative. You will remember she is the teacher who met with me at the beginning of the year and honestly said, “I’ve never taught a child with Down syndrome. I want to do a good job. Can you help me?”  Of course, I love a teacher who admits that and wants help so this forged a great partnership. As we were all chatting at this little addendum IEP she said, “Did she tell you how she did on her final yesterday? She missed two questions on her final and made a 97 on her final. I am so proud of Rachel.” Then she said, “I wish all my students would work like Rachel.”

Oh the benefits of inclusion.

 

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Family Movies & Down Syndrome

In my circles we talk a lot about the need for family friendly, wholesome entertainment. That’s not just my church circle either. In my Down syndrome circles, we talk about wanting to see more positive images of individuals with Down syndrome in the media and in entertainment. I personally feel that changes in the media are crucial to changing perceptions. I believe it is key.

Well, family friendly entertainment and Down syndrome collide in a move set to open in theaters tomorrow. “Where Hope Grows” is a movie about a baseball player whose professional career was cut short due to his personal problems. His life takes a different turn when he meets a young man with Down syndrome (David DeSanctis) who works at the local grocery store.

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David DeSanctis stars in this movie and is one of the first actors with Down syndrome to star in a nationally released film. Recently, we had the opportunity to meet him during the NDSS Buddy Walk on Washington. He was really fun and aspiring actress Rachel was very impressed.

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GO SEE THE MOVIE! I hear all the chatter about the lack of family friendly entertainment. Well, we change that by supporting family friendly entertainment and we will see more people with Down syndrome and other disabilities in positive roles in the entertainment industry if we spend our money and time going to these kind of movies.

And as one of my favorite movie characters of all-time would say, “That’s all I have to say about that.” ~ Forrest Gump.

 

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