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.

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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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A Few Tips for Successful IEP Meetings

At the end of the school year, I call it IEP Season. I notice an upsurge in social media requests and pleas for information. I also seem to get more blog readers, emails and inquiries. So I’m cheating a bit today and re-sharing some thoughts I have about making IEP meetings successful. I hope they help.

Before I share my tips, I am going to direct you to a piece by my friend, writer and mom Maureen Rich. “My Son Belongs in Your Classroom” is a great piece and includes some great links to resources, research and beyond. Read it and share it with your team, administration and district leadership! That is a good segue into my first tip for successful IEP meetings.

Be prepared for IEP meetings. Regardless of the age of your child, this is critical. There are several points to this thought. For us a first step to preparation before we ever attended an IEP meeting when she was three, was to learn our parental rights, learn about special education law and the state rules and regulations. I have heard people say “I don’t want a fight so I don’t need to know the law.” I wholeheartedly disagree. Knowing the laws and your rights will help you to avoid fights. It will help you to know what you can and cannot ask for. It will help you to be reasonable. Being reasonable deserves a blog to itself. A person at Rachel’s IEP meeting told us that one of the things she most respected about us was that we did understand the law and it helped us to advocate for Rachel and what was appropriate and best for her. I usually know when they tell me something if it is legal or not. If I don’t know, I know how to find the information. For example, I was once told at an IEP meeting that Rachel could not have OT during Art because it was against their regulations to pull her during “specials.” I said I would like to see that policy in writing and I was sure that was not correct because this is an INDIVIDUAL plan and whatever the team decides is appropriate. I told them that I could call someone right then to check if they would like. They said no need to make any calls. They went along with us on it. No written policy could be produced because there was no policy in writing. Rachel’s speech therapist, who was young and this was her first job, told me that she had been telling parents for four years that she couldn’t see kids during specials because she had been told it was against the law. Now, she knew better. Key words here – INDIVIDUAL and team decision.

Another part of preparation is reviewing materials. The first thing to review is your child’s work and if needed take examples.  Everyone differs on what they want but I want to see a draft of the IEP goals and all evaluations before I get to the meeting. I really like a few days to review. I do not like surprises in general and I sure don’t like to be surprised at an IEP meeting. This has helped us to have smooth meetings as it applies to developing objectives, goals and benchmarks. Some people prefer not to have a draft of the IEP goals and to work together to develop those. That is a personal decision. The key on this is to have a team that works together to develop the goals and objectives. You should not feel like the draft is the way it will be and that it has been developed by the school with no input from you. I don’t recall this ever being an issues for us, but I do know others who have had a battle with this. I get my red pen out and mark what we need to re-visit and what we need to address. They are usually very receptive.  One resource teacher did tell me that those red marks intimidated her. I told her it was a totally visual thing for me. Just need to be able to see the marks so I don’t miss anything. I did change to blue for her. She deserves accommodations too! I am emphatic that I see evaluations prior to a meeting. That has helped us but know your rights and what works best for your child and with your team.

IEP I love my life who I am os 15

To treat or not to treat. This is a hot button issue for many people and I’ve changed approaches through the years. There are adamant supporters and adamant objectors. In the beginning I did not take treats to meetings. Part of the reason was because I wanted to be sure that there was no confusion that we were there to develop a plan for Rachel. We weren’t there to make friends. While I want them to respect me, I have a lot of friends and would not choose an IEP as my social recruitment venue.  We can always use more friends but that is really secondary. As we have developed relationships with our educators, I do take treats. They look forward to the treats and I like to make them. I usually leave a few in the office, too. I do believe we are respected and we have made a lot of friends along they way, but trust me when I say that there is no confusion that this is business. You can be polite and respectful at a business meeting, too.

Next, I encourage you to try to focus on the positive. When I say focus on positive, I’m really talking about your child. Surprisingly, I have been known to take over the meetings. I take my own agenda with my list of things that need accomplished. A mentor told me not to allow people to camp on the things your child couldn’t do. Great advice. Focus on what your child can do. These are the things Rachel is good at so how can we adapt or modify this to make it work for her? I know it can be very difficult to do this but try! Yes, I know all the things my child can’t do but she can do these things so let’s talk about that. As you may imagine, I am wordy so “less is better” is hard for me. I encourage you to try to stick to this “less is better” mantra though – especially when it goes to the challenges for your child or evaluations. Do not get sucked into what your child cannot do. If my child could do the same things as everyone else the same way as everyone else, we wouldn’t need an IEP. You might do a short video clip of your child or have your child come in and say a word or two. There are a lot of avenues for the team to get to know your child. Of course, as they get older they are invited to meetings. Rachel now does a little PowerPoint Presentation at most of her meetings.

IEP I love my life who i am os 15

Educate the team on your child. I always take a letter (hard copy just in case) to the annual IEP and to anything related to a transition to a new situation. It is often just a version of the letter I send to her teachers at the beginning of each year. The one  I took this week had these sub-headings:

  • Intro with demographics/thanks
  • Describing Rachel
  • Our goals for Rachel
  • Specifics on Rachel. These are things like the practical way her iPad is utilized.
  • What Rachel enjoys
  • Additional information including our contact information.

Even though all of this should be in the IEP, we have found this to be helpful. You can also list things you would like them to read or watch like Just Like You – Down Syndrome.

Goals and Dreams. Starting with Rachel’s very first IEP meeting at the age of three, we have started every meeting discussing our hopes and dreams for Rachel. Over time these have become her hopes and dreams. They’ve changed a little but you always have to be thinking ahead and how what you are doing will impact that. We want her to get a diploma.  What do we need to do now to make sure we can get that diploma? A friend I know took the video of Rion being accepted to Clemson to open her daughter’s kindergarten meeting. Believe it or not, we have educators and administrators who don’t know that students with intellectual disabilities have college opportunities now. I thought it was a very clever idea to show “this is what we want our daughter to do. And no we are not hallucinating and we are not in denial.” College is a possibility!

IEP I love my life who I want to be 15

Ending and Follow-up. At the end of the meeting, you do not have to sign the IEP. If you want to review it you can but you do need to sign it within 10 days or let them know there is an issue.  I try to always say thank you to the people involved.  Then, I try to follow-up with a thank you email and a review of anything that needed followed up on. Then, I make sure when we start with a new group that I send them that letter again and touch base with the case manager (resource teacher in our situation) on the items that were to be followed up on. Follow up is certainly key. While I wish we lived in the happily ever after and everything in the IEP magically happened, my experience has been that you need to do a lot of follow-up.

I always leave meetings emotionally exhausted but I almost always leave feeling we have done our best for Rachel. That’s my definition of success.

 

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My First Blog: Great Women of My Life

May 8, 2011

 Jonathan has been wanting me to do a blog for several years. Most importantly, I chose a name for my blog. SassySouthernGal. Seems quite appropriate. Don’t know where this will go but I did think that Mother’s Day is the perfect day to enter into the world of bloggers.I could blog every day for awhile on the great women I have known – the great women of my life.  However, I’m going to pay tribute to four. First, my mom – Patricia Lee Ausburn Barnett.  She is the tiniest thing but full of more fight than anyone you will ever meet. She has not had an easy life. She grew up the eldest of three children with large extended families on both sides. She never attended the same school for two semesters straight. My grandpa was a farmer and was quite “antsy” and moved his family a lot.  They were poor.  They were taught about Jesus, hard work and lots of common sense. Mom would need all three to raise three children (her first born when she was 16) and my dad. He (who I love dearly) was probably the biggest challenge. We weren’t poor but we didn’t have a lot. She didn’t graduate from high school but she is smarter than just about anyone you’ll meet.  She can build houses, sew prom dresses, grow a garden and can food for the winter all while working full time at laborous jobs like Birdseye Frozen Foods night shift.  She lost her dad when she was only 37. He had a massive heart attack – a trend in her family.  She lost my brother her only son when he was 22. We never had a lot but she always made sure we had special birthdays and a special Christmas. My all-time favorite food is her chicken and dumplings which I won’t even try to re-create. They’ll go her grave with her. I love you mom, the first great woman of my life.
I love these pictures of my mom and think she looks like a movie star.

I love these pictures of my mom and think she looks like a movie star.

The second great woman of my life is Mae Ann Luebker. Growing up in Joy, Arkansas, Mae Ann was my 4-H leader.  I credit 4-H for my speaking skills, organizational skills, advocacy skills and so much m ore.  She and her husband Wayne became the dearest of friends and I have for as long as I can remember sent her a mother’s day card.  Mae Ann and Wayne lost their daughter Penny when she was three or so years old. They had moved into our community and attended our church but none of us knew them very well.  After Penny’s death, my sister had the idea of inviting them to be our 4-H leaders. The say it saved them as they grieved the loss of their angel. Gave them a brood of kids to pour their lives into. It saved us, too. They taught us a lot about working hard to earn something like an overnight trip to an amusement park or a trip to a competition. Big deals forty years ago in rural Arkansas. They taught us to not accept mediocrity but to do your best. She has been at almost all of the important events in my life. Lifelong friend. Remarkable woman who is truly my second mom. I give credit to Mae Ann for a lot of who I am today. Thank you for loving me always, Mae Ann.

mae ann wayne UA grad

Next is my daughter Rachel. She is 11. I am not going to say much because I’ll be dedicating many blogs to her for sure!  She is remarkable simply because she is. I told her today that if there was a prize for best smile on the planet, she would win. Her smile lights up my world and the world around us. She is a lot like me (though I think she got a lot of her daddy because she’s missing a few of my really bad qualities). She happens to have Down syndrome. She has to work harder than most people to do things that come simple to many.  No matter toher, she has great self-esteem (again from her daddy) and reminds me every single day of God’s grace, goodness and faithfulness to me. I love you little Missy – the third great woman in my life.

I didn't lie in 2011 - there have been lots of blogs about Rachel.

I didn’t lie in 2011 – there have been lots of blogs about Rachel.

Finally, my salute to my Grandmother. My Grandmother Molene is who they say I am most like. I should be because I spent countless hours at her house growing up. She made the best chicken and dressing in Joy. People still talk about it at the Mt. Hebron Baptist Church homecoming. Literally, she lived across the field from us.  Almost every day, I would trek across the field and the little creek to her house. Barefoot most of the time. We’d draw water on the backporch, shell peas and shuck corn on the front porch. I still hate to shuck corn. She was always cooking something that smelled good. We’d eat cookies and drink iced tea.  I loved staying the night because she had flannel sheets and made the best gravy for breakfast. I remember finding her singing “What A Friend We Have In Jesus” while she cooked. She loved her family – her kids, grandkids her 10 brothers and sisters and all of theirs!  She was a hard worker and dedicated to our little community.  Most importantly she loved Jesus. When I was little she took me to church. Enough said. I am eternally grateful to her for playing that role in my life and my sister’s life when we needed it. She died a few years ago, and I miss her so much. I especially miss her on Mother’s Day because for some reason that’s when I think about and say my thanks for her for taking me to that little country church in Joy AR where I trusted in Jesus for my salvation. I thank God for Godly grandmothers and especially for mine.  I love you and miss you so very much Grandmother. I did take a stab at making your dressing last year. It was pretty darned good might I add.

Picture in our kitchen where my mom was baking cakes for the school cake walk.

Picture in our kitchen where my mom was baking cakes for the school cake walk.

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5 Ideas for Teacher Appreciation

It is National Teacher Appreciation Week and today is National Teacher Appreciation Day. At the very least, I hope you will send an email to your children and teen’s teachers and say “thank you.”  Rachel has been blessed with remarkable teachers. I often say that I think teaching is the highest of callings. I think most people go into teaching because they truly love and want to educate children. Rachel once had a teacher who said she was quite anxious when she found out Rachel was in her class.  She had never taught a child with Down syndrome. This was the general education classroom where Rachel was a trailblazer. Oh wait? That’s still happening. Yes, IDEA was passed 40 years ago. I digress. That’s a discussion for a different blog. This teacher said that she wanted to help Rachel grow both academically and socially.  She then said, “Little did I know that Rachel would also help us to grow academically and socially. She taught us that, despite what others think, we could all do amazing things.  She is an amazing little girl and I am so very thankful to have had the privilege of learning from her!”

morphis rachel 1 day brewer rachel - Copy

I don’t think most people go teaching for the high pay but summers off is probably inviting. I don’t think they go into because they get to deal with parents either.

I know there is a lot of discussion about teacher gifts. I also know that as our children grow up, there are more teachers to honor. If you are like me and have a child who receives special education services, you have always had more people who you want to recognize! I want to be thoughtful but I don’t want to spend a month’s pay on gifts. Once someone told me they would be embarrassed to give a teacher anything less than a $25 gift card. With seven core teachers and a resource case manager (plus therapists, paraprofessionals, counselors, social workers, etc), I cannot afford $25 gift cards so I went straight to some teachers for input. The response was that we would appreciate a $5 gift card, a hand-made thank you card, a plant or any other small token of appreciation. I thought I would share some of my ideas.

1. For the past eight years I have hosted a luncheon for Rachel’s teaching team. You will find recipes for chicken enchilada’s and Key Lime Pie in past blogs. This year, it is too difficult to get them all together for such a treat so I punted. In Middle School and elementary it was fairly easy to invite the entire team and they always loved it. The time has passed on that but if you have elementary or middle school students, you might try some version of this.

2. Plants.  You can buy cute little planters at the Dollar Tree, Target or other stores. When you buy your summer plants, buy a few extra. Put it in a planter and give to the teachers.

3. Home baked treats. I have heard some teachers aren’t fans of this because they don’t know what your kitchen looks like!  I would be sure it is someone you know fairly well. I often send homemade treats for the teachers for school events and I’ve never had a complaint. Rachel’s case manager loves pecan pie. Today, we delivered a homemade pecan pie to him.

4. A book. If your child has a disability, you could give them an educational book. Or if you have a favorite book that you think they would like, you can give that. Rachel loves her reading teacher. Rachel loves all her teachers but this one especially. He and I have shared some ideas about books we enjoy. One of my most favorite books and one that I think is a must for everyone to read is “Same Kind of Different As Me” by Ron Hall and Denver Moore. Rachel’s teacher told me he had not read it, so I ordered it off Amazon and she is delivering it today.

5. Handwritten notes. I believe teachers love handwritten notes. Don’t we all? This is cheating, but we also do some thank you’s on the computer with a picture of Rachel. I print this and cut them and attach a piece of candy. Some Rachel writes a little note on and others we just do the printed card and candy. This year, we attached “Grand” candy bars. In her handwritten notes she said, “you are a grand teacher.” Corny but clever. If you know their favorite candy, you could send a few pieces or a bag of that.

rachel thank you

I helped Rachel deliver the plants this morning. They all seemed so appreciative and commented that they were so happy to get a note with her picture on it. How easy is that to do and it’s just a small way to say a big thank you! Living in such an entitled society, I think it is important to teach our children this concept of gratitude. This is a hands-on opportunity to do just that. I have so much fun watching Rachel give out her little gifts because she has such joy in giving. Well, until she told me I needed to leave.

Happy Teacher Appreciation Day. I want to take just a moment to say thank you to all the teachers I had through the years. Some are on Facebook. One in particular, Mrs. Wildman, taught me in elementary school. That’s when my love for writing was discovered. Special thanks to you Mrs. Wildman for your encouragement!

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On a Day Like Today

On a day like today most 15-year-old girls get up and go to school. Rachel, she got up early and rode with mom to Topeka. Today would be the next to last step in the process of the passage of the ABLE Act. Of course our last step will be when we open Rachel’s ABLE account. We’re taking Congressman Yoder and Representative Davis along! Since inquiring minds want to know, that is most likely two years out because it all has to be set up, regulations written, bids taken, yada yada yada. The nuts and bolts. Remember, we are the PR girls.

First stop, KS ABLE Savings Account bill sponsor Representative Erin Davis’ office.

able signing davis rachel jbm

I cannot say enough great things about Rep. Davis. What a champion she is for those with disabilities and their families!  I am especially proud that this is the first bill she sponsored. What a great bill to call your first. Thank you Rep. Davis! I think/hope I might see her in Washington someday.

Next stop, the Governor’s Office. As we waited for him, we met and re-met some of the legislators and champions. State Treasurer Ron Estes and his entire staff have embraced the ABLE Savings plan and are seen as leaders across the country for this legislation. I’ll forget someone if I start listing names, but I certainly have to say thank you to State Senator Greg Smith who amended his Senate bill to include the ABLE Act. This was huge in the safe passage of the ABLE Act. Want to give a shout out to Rocky and Mike at the Kansas Disability Rights Center. They stay on top of all legislation that impacts individuals with disabilities and they were pivotal in helping navigate the ABLE act to the finish line.
Then, the Governor came in. Rachel re-introduced herself and they had the opportunity to chat a bit. We took a ton of pictures. Then we took more pictures. Two of my personal favorites.

able hugging governor KS ABLE brownback signing rachel excited

He gave Rachel the copy of the bill and the pen.

able act document

SONY DSC

She wanted to take them to school today but I was afraid the actual bill would be mutilated. I hesitantly agreed to let her take the pen. We’ll get them framed. They don’t represent just the Governor signing this landmark legislation, though that would be enough! They represent eight years of hard work by so many people from the national level to the local level. Many emails, phone calls, plane rides, letters, tears and prayers.  The bill is representative of that labor of love and conviction and that famous pink house!

able in the capitol

Rachel handed out her business cards, too!  And I might have taken a moment to mention to Governor Brownback that we want to start working on the Kansas version of the Down Syndrome information Act. After all, when he was Senator Brownback he co-sponsored the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act. I might have mentioned it to a few legislators, too.

Then we headed back to Olathe. Rachel is always troubled to miss school for anything. She was anxious to get back. On the way back she had to read Chapter 16 of “To Kill a Mockingbird” on her Read2Go program on her iPad. Then, she had to study her iPad flash cards for her test on Friday.

On a day like today, I’m proud to be an American. I’m proud to be a Kansan. I’m proud to be Rachel’s mom.

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Rachel’s School Spirit & Inclusion

Back at the beginning of the school year Rachel ran for Student Council. We worked on posters for several weeks. She did her little speech. She handed out candy. Election day came and mom and dad nervously awaited her arrival home so we could learn the outcome.  I got a call in the afternoon and heard excitement in her voice. I thought “Oh my, she won!”  Her voice said, “Guess what mom? I was elected as a member at large!” She was thrilled. When she auditions for a show and makes the ensemble, she has that same attitude. No matter how small the part and whether she wins or loses the election, she has this amazing attitude. Earlier this week,  Kelle Hampton blogged about college for students with intellectual disabilities. It was to parents and one of her points was that we need to let our children take chances and make mistakes. I often make that point in my workshops. All children whether they have Down syndrome, they are a braniac or they are just happy to be here, that’s how we learn to navigate life. None of us is immune to disappointment.

So almost every Monday night Rachel has trudged off to Student Council. I believe the students have included and encouraged her. The president has been amazing to include me on the messages she sends before and after meetings so I can help facilitate involvement.

wpa w ashley reece

Rachel comes home with her notes (that I can’t read) and we have to update the calendar. The vice president is an amazing young woman too. She is headed off to become a special education teacher and she will be an amazing one. She has started calling Rachel from time to time and inviting her to do things. Rachel getting a phone call from a senior she idolizes does make her feel pretty important.  That wouldn’t have happened if she hadn’t taken that chance and gotten involved.

jordan rachel stuco 4_15

She has loved being a part of Student Council (STUCO.) Really that goes to the point of it all. We all want to be a part of something. We all want to belong – remember Maslowe’s Hierarchy of Needs anyone?  Rachel is no different. She may be a part in a different way but she believes that her role on STUCO is as important as everyone else’s.

Monday night was the last meeting.  Rachel got the “Best School Spirit” award for “being so optimistic and happy all the time!  We couldn’t do it without you.” Once again, you would think she had won an Oscar!

best school spirt certificate stuco spirit award

The STUCO president sent me this: “Rachel made a wonderful speech tonight at our meeting about what Student Council and leadership means to her. She also included how much she has enjoyed working with Mr. Smith (sponsor), Jordan (VP) and I. Rachel is such a beautiful person inside and out and it has been an honor working alongside her this year! :)”

And now about that inclusion thing. Who does benefit from inclusion? I think the answer is pretty clear.  Thanks Ashley and Jordan and others for doing this journey with us.  Can’t wait to see how you change the world.

 

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Ordinary and Whimsical

Last week was the National Down Syndrome Society’s (NDSS) Buddy Walk on Washington: the time we set aside to go an tell our stories on Capitol Hill. We also celebrate and give awards. This year I had the tremendous honor and privilege of giving one of the NDSS Ambassador of the Year Awards to Sherri Harnish.

harnish capitol

This is my award speech for Sherri:

BWW Ambassador of the Year Harnish

Ordinary. Throughout history ordinary people have done the extra-ordinary to save lives, to further civilizations and to effect change. When I think of the NDSS Ambassador program, I think of how the National Down Syndrome Society has taken seemingly ordinary people and challenged them to do the extra-ordinary. Of course the extra-ordinary happens when these ordinary people build relationships with legislators on the federal level, on the state level and on the local level. The impact is powerful. The impact is things like Passing the ABLE Act!

Truly the impact is more than that and nowhere is that more evident than in the life and through the contributions of our next NDSS Down Syndrome Ambassador of the Year, Sherri Harnish of Nebraska. Through her “trade” of photo journalism Sherri Harnish shares beauty. Her family’s story, her husband Joe, her daughter McKenzie, and her daughter Macy’s lives are all captured and shared through the beauty of photography. In sharing her family she shares the amazing world of five-year old Macy, who happened to be born with one of those extra chromosomes.

Personally, I find myself drawn to Sherri’s photos because of her use of color and fun. They are whimsical. They make me want to know more about Macy, about individuals with Down syndrome. Sherri says that she believes Macy’s story can best be told directly from Macy. She says she is grateful that she is able to utilize the power of Macy’s own voice to effect change for herself, and others just like her. In sharing Macy’s life and their family’s journey through the medium of photography, she has impacted not just her local area but the nation.

One of the most impactful messages sent to Congress as we marched to pass the ABLE Act was Macy’s Message to Congress. With a mere 40,000 YouTube hits, Sherri captures Macy asking Congress to “Pwease Pass the ABLE Act Now.” Who could say no? Macy says, “I am Awesome. And my future is bright and full of potential.” Sherri, because of your efforts, your work, your advocacy, the future of many people with Down syndrome is brighter and full of more potential.

Sherri, I think you are awesome. It is my great honor and privilege to present to you this year’s NDSS Down Syndrome Ambassador of the Year Award.”

sheri's family

Back in December a group of ambassadors, including Sherri,  were on the Hill for the historic House ABLE Act vote. My friend Joe and I were sitting and chatting and he said, “Do you remember when we were like them?”  I knew exactly what he meant. Optimism and hope oozing from the Sherri’s, Brad’s, Kelly’s and others. Of course I remember when our children were younger and we hoped for someone to introduce something like the ABLE Act and now they have and we have ABLE as the law of the land. We are still optimistic, but we’ve been disillusioned by some things. We reflected on this for a minute and then we went on to talking about employment. There is still much to do.

 

joe & macy

For now thought, let’s celebrate how far we’ve come and envision where we will go. And if you don’t believe that Macy and Rachel, Peyton, Eric, Ryan and so many more are awesome and that they have bright futures and full of potential – well then you have not listened to Macy! Check it out.

Macy’s Message to Congress

Sherri, and family, thank you for your beautiful, whimsical part in this journey!

rachel comforts macy

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Seven Days of Rachel’s Wild Life & Mom Too!

I’ll write more in-depth next week but on this Friday, I wanted to share some images from our past seven days and an unexpected piece of encouragement that an exhausted momma received when she returned home.

April 15, 2015 KS Gov Brownback signs the KS ABLE Savings Plan into law.

April 15, 2015 KS Gov Brownback signs the KS ABLE Savings Plan into law.

Congressman Yoder's FB post

Congressman Yoder’s FB post

Wind blown presentation of NDSS Champion Award to our Congressman Kevin Yoder on the Capitol steps. Rachel says he is the BEST ON! She also asked him for a job. I love it!

Wind blown presentation of NDSS Champion Award to our Congressman Kevin Yoder on the Capitol steps. Rachel says he is the BEST ON! She also asked him for a job. I love it!

Rep. Meadows (R- NC) stopped us to compliment Rachel on her smile and share a moment with us.

Rep. Meadows (R-NC) stopped us to compliment Rachel on her smile and share a moment with us.

Rep. Lynn Jenkins (R-KS) always gracious to take time to say hello.

Rep. Lynn Jenkins (R-KS) always gracious to take time to say hello.

Beauty Queens in the Halls of Congress. Rachel was all over that!

Beauty Queens in the Halls of Congress. Rachel was all over that!

Rep. Sessions (R-TX) following remarks at NDSS Congressional Champions Breakfast

Rep. Sessions (R-TX) following remarks at NDSS Congressional Champions Breakfast

Olathe South Graduate & NDSS President Sara Weir with Olathe South freshman and STUCO member

Olathe South Graduate & NDSS President Sara Weir with Olathe South freshman & STUCO member at NDSS Awards Banquet

Girls finally meet. Moms are fabulous friends. Now girls can be too.

Girls finally meet. Moms are fabulous friends. Now girls can be too.

Honored to present Ms. Sherri Harnish with NDSS Ambassador of the Year Award. She and her daughter Macy are "awesome!"

Honored to present Ms. Sherri Harnisch with NDSS Ambassador of the Year Award. She and her daughter Macy are “awesome!”

Dear Friend Joe

Dear Friend Joe

Mom's are friends and now these two cuties are too!

Mom’s are friends and now these two cuties are too!

Rachel received an award at the Olathe South Academic Awards program. We were at BWW :(

Rachel received an award at the Olathe South Academic Awards program. We missed the ceremony because we were at Buddy Walk on Washington

Graduation Party for the Queen

Had to hit a graduation party for The Queen

Rachel's 3rd Grade Teacher got married

Rachel’s 3rd Grade Teacher got married!

I spoke at our church’s ladies conference a week ago today, and I returned home to this beautiful card:

pic on note fr retreat 2015 note from retreat 2015

It was really beautiful, touching and humbling. I didn’t post both sides of the note. I almost always end my speeches with the story of George and Rachel: The Power of Inclusion. On the back side this lovely lady who sent the card went on to say, “When I saw this picture on this card, I just knew I had to send it because it reminded of the tear producing you told about the special friendship between George and Rachel.”  She said more but that reached out and grabbed my heart and tear ducts.

I wonder if George or Rachel knew the impact they would have?  Like I say in my speeches, God knew. “For I know the plans I have for you,” declares the Lord. “They are plans to prosper you and not to harm you; to give you a hope and a future.” Jeremiah 29:11.

And this was just the last seven days!

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