Not Just Like You?

I am cheating again today. Last week I let you know that Rachel was getting her tonsils out. She did and she is recuperating according to plan. She is an amazing patient and a trooper. We girls aren’t accustomed to staying at home so both of us are a little “stir crazy” but all is good.

My Facebook feed reminded me of this blog from two years ago about this time. Since we are still in tonsil recovery or because I am just lazy or because it is the “21st” day of the month, I thought this was worthy of a re-post. I hope you enjoy!

Not Just Like You?

Yesterday it was a great honor to spend our lunch time with some good friends. The occasion was another screening of the Just Like You – Down Syndrome video. Our sweet friend Kim had been wanting to host a viewing in her lovely home. She is a native Arkansan and her Southern hospitality was evident!  We invited some friends – some had seen the video. Others had not. There were adults and teenagers and siblings and friends. It was nice.  As I sat there, it struck me that Rachel is not just like you but probably not for the obvious reasons.

Lunch group for JLY.

Rachel and Savanna intro

Rachel has Down syndrome which means she is not “just like” most people. But as it says in Just Like You – Down Syndrome, we are all different.  For example, one of my doctors says that my back is symmetrically perfect.  It must be unusual and a big deal because he has told Jonathan and me on several occasions. My response: Who knew?  Then, there’s Jonathan’s head. According to several barbers he has a perfect head.  Again, who knew? You should be careful around us because we have a lot of perfection going on!  Just as Rachel has Down syndrome, we all have things that make us different.

girls at kim's

What hit me was that how she is really different is in what she does.  She accompanies me to speak to classes and groups.  When she had just learned to read she would go with me to speak to educators and she would read one of her little “I am Sam” books to the group. It was often entertaining to see how astonished they were by her reading.  She started going to the Tennessee Capitol when she was in preschool and meeting legislators. Now, she heads off to Washington DC and she believes that she is best friends with Senator Roberts, Senator Moran and Congressman Kevin Yoder. She does seem to connect with them and their staffs and that pink house has helped.  She also thinks that she could call Bill Dance to go fishing with her and it’s no big deal. After all, she was on his show and has been fishing at his house. She told me this week that she wants to do workshops about Down syndrome when she gets older. I told her she already does that. She seems at ease in front of an audience speaking.  The majority of Americans cannot say the same.

So no Rachel is not just like most other 14-year-old girls. Rachel – thanks for being who you are perfectly created by the hands of God.

Share Button

Advocacy: Tonsils, Inclusion, Life!

Rachel is getting her tonsils out tomorrow. They called Monday to go over the intake list.  About five minutes into the interview, the nurse says “Did you say she has Down syndrome or she has been tested for it?” This did not inspire confidence. Especially when you consider that we had discussed her age and that she has Down syndrome earlier in the conversation. We had also discussed that they had her scheduled for 11 am and that could get pushed back. I called the doctor. We have an 8:40 am surgery time now. Advocacy crosses many lines.* Stay tuned.

Since we are busy with school leadership conferences and a last work shift and tonsillectomies, there is little time to blog so I’m cheating.

leadership conference15

I read this article that had been posted Amy Van Bergen, Executive Director of the Down Syndrome Association of Central Florida. I love it. I shared on Facebook and some groups but I wanted to share the link here too. Love to hear feedback from readers about your thoughts. I have a friend who thinks the lack of commitment to inclusion is a fiscal issue. I am not naive. I know money is an issue. But I believe at the core it is a philosophical issue. Regardless of your perspective, this is a good read. “Is ‘Inclusion’ Really the Answer For Children With Special Needs?” 

family circus crayons

Last, we attended the Down Syndrome Guild of Greater Kansas City family barbecue Saturday. I loved seeing some familiar faces and friends. What did I like best though?  Meeting families with little ones. So glad to connect to some of them. Some of their questions reminded me of this blog I shared a few years ago. Rachel was 14 when I wrote it. Now she is 16. I would still say the same things to those with babies or little ones. Find out what I would say 14 or 16 years later!

Hard to believe this precious baby is 16! Photo by Hal Jaffe.

Hard to believe this precious baby is 16! Photo by Hal Jaffe.

* I would like to say that we have the highest respect for doctors, nurses and healthcare providers. Overall, we have had very positive experiences.

Share Button

Two Suggestions for Church Inclusion

In my blogging, speaking and networking a hot topic is always “The Church” and inclusion.  Almost every time I do a speech or a workshop, questions arise. I am a person of deep faith. While I try not to hit people over the head with it in presentations and such, I also do not hide it. It is a huge part of our family, our journey and of my inner core. I am not a religion expert, but I believe that inclusive practices should be welcomed in any church. I am Christian and more specifically, I have almost always been a part of Baptist church. Therefore, organizationally I am most familiar with how Baptists operate. We as Baptists believe in local church governance so there is some difference from church to church. Whatever your denomination, religion or faith preference I believe we can share some ideas that will support a person with an intellectual disability being meaningfully included in your church experience.

jdm mega selfie at  bvbc

That said, many people wrongly assume that “The Church” welcomes those with disabilities with open arms. From what I have heard from families and my own observations, I do not believe this is accurate. I do think we are making headway. I also believe that many church leaders recognize the need to make progress in this area. So I do not want my blog to be a forum for throwing darts at anyone. Please do not misconstrue stories as an indictment of anyone or organized religion. Instead let’s allow this to be a platform for educating and where we might initiate conversation and generate ideas. Remember we call carry our own baggage. I am sharing from mine!

fuge rappers

Overall, we have had positive church experiences and Rachel has been included. I have done a bit of research to get input from those who have worked with us and Rachel through the years. I want to share a couple of ideas today from our experiences. More will follow. I also want to tell you that while it has been positive overall, I too have experienced wounds.

As a starting point, I want to encourage those of you who want your child included with typical peers in church (for us that is all Sunday school, all activities and worship) to try inclusion. Two immediate thoughts come to mind. One is to meet with the leadership. It depends on the age of your child but start with the minister or director for that age. I had a prenatal diagnosis and knew our preschool minister prior to Rachel’s birth. There was never any question but that she would go to the church nursery and do the same things as the other babies. Rachel was healthy so I didn’t have that component to deal with. Rachel went to the special activities for her age group and participated in Christmas programs, Easter programs, children’s choir and hand bells.  She played Baby Jesus in the Christmas program because she was such a sweet baby. She always had very patient adult workers and fully participated. Her smile lit up the stage, even when her voice was off-key, from an early age.

pdo christmas 02

Hand bells were one of my favorite things. They color coded them for the children so Rachel didn’t have to have any adaptation at all.  She had so much fun and has loved church choir her entire life.

church choir 05

At each stage and transition, I would meet with the leadership, paid and volunteer. I wanted them to know our expectations. I wanted them to know Rachel’s needs. I wanted everyone to be successful. I basically knew nothing about Down syndrome before Rachel. I have had a crash course on Down syndrome. I don’t think it is reasonable to always expect people to know what to do if we don’t tell them or help them.

Even though we never needed a special friend or buddy in her church activities, I’ve always appreciated that our ministers offered. Some children and teachers need the extra good hands guys for safety or for helping with activities. Talk with them openly about your desire for your child to be a part. This is not just for your child. It is for the other students and the adults as well. We learn from each other.

oksana rachel duck

Second tip is to educate. Offer to do part of a training to help teachers and helpers know how to work with your child. If they won’t or can’t allow you to do this, provide them with written materials, resources and videos or Internet links. Make sure to meet the adult volunteers who will be working closely with your child and give them information. For example, we would tell them that we expect Rachel to follow rules. She needs extra time to process instruction. Fine motor skills such as writing are not her strength. She is a good reader and will want to read out loud. I like to do some education of staff, teachers, etc, if at all possible. My next step would be to help you find peers who could be a buddy in the student events, students who would work to include her. You may need adults to help monitor in the beginning but before long, they students will do the work. One observation I have always had is that many of her teachers comment on the fact that Rachel can read better than some of her peers. I think this alone is a beautiful example of this church inclusion thing. It promotes this idea of high expectations.

gf beautiful choir

I strongly recommend peer presentations at church, too. When Rachel was younger we did one for her class every year. We did a little PowerPoint just like we would for school. “Just Like You – Down Syndrome” has provide us with an easy educational tool. When we are having a weekend discipleship retreat, I find out who Rachel’s leader will be and send them an email. I invite them to spend 13 minutes watching “Just Like You.” Most often, they do and it makes a huge difference.  JLY is specific to Down syndrome but it has great points (as does “Just Like You – Autism”) for working with kids of all kinds of abilities.

I guess I have more than two suggestions here but I want to leave you with this final thought.  Have courage. A long time ago I decided I would never allow my own fears to prevent Rachel from being a part of something. I know it’s a fine line but do the best you can to educate everyone who will be with your child.  Seek out a few positive peers/mentors to assist.  Don’t give up at the first wrong turn. It is hard. It is exhausting, but this picture is worth a million words. #Inclusionworks. It’s worth it for everyone.

BGE petracek party

NOTE: I know there are people who have health limitations and other limitations. I am not all-knowing. I am simply sharing from our experiences and philosophy. “For I am confident of this very thing. He who began a good work in you will be faithful to complete it.” Phil. 1:6.

We need open dialogue to address this multi-faceted challenges.

Share Button

Rachel’s Patriotic Cookie Pizza

Rachel loves birthdays. Last night when she was praying she thanked God for celebrating America’s birthday. We kind of have a tradition of making some different patriotic looking things. Last year we made some 4th of July Breakfast Pies. Several years we have made a Flag Cake. That has been her favorite. She loves cake!

Flag in the kitchen 2

It’s just a yellow or white Cake with holes punched in it. Drizzle strawberry Jello in the holes and refrigerate.  I make a pudding-whipped cream frosting to spread over the top. Then, we make our flag from blueberries and strawberries.  It is tasty and festive!

Thanks to our friends at Pillsbury, this year we decided to try another new recipe so we opted for a Patriotic Cookie Pizza. Pretty easy to make.

patriotic cookie 1

Rachel’s main jobs were to spread the cream cheese mixture and then help put the star together. I just used the tip of my finger to outline a star. We outlined that with the raspberries, filled that with raspberries and then filled the edges with blueberries from our friends the Hiatt’s Blueberry Farm.

patriotic cookie 2

It’s in the fridge now but I suspect it will be a yummy treat a little later.  You can find the recipe and directions with this link to Pillsbury Patriotic Cookie Pizza.

patriotic cookie finished product

We are thankful to live in a country where we have so many freedoms and could never express our gratitude for the sacrifices so many have made so we may enjoy these freedoms. God Bless the USA!

Share Button

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.

Share Button

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.

iPhone 966

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.

iPhone 965
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.

iPhone 863

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.
julia&rachel camp 12
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.

Share Button

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.

 

Share Button

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.

 

Share Button

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

 

Share Button

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.

February 15 131

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

 

 

 

Share Button