Thankful for Pink Houses & So Much More!

Happy Thanksgiving 2014! This is a reprint from last Thanksgiving. As you read you will think, are you sure? Yep -still waiting on the ABLE Act to pass. We’ve made progress though. House Majority Leader Kevin McCarthy (R-CA) has assured us it will be voted on in the House next week. Prayers that it will then pass the Senate before they adjourn the following week. Anxiously awaiting that House vote date for next week.

On behalf of Rachel and many others, I want to thank our own Congressman Kevin Yoder (R-KS), Senator Jerry Moran (R-KS) and Senator Pat Roberts (R-KS) for supporting Rachel. They heard us and responded. Rachel considers them friends and we do too!  I would then like to thank Senator Bob Casey (D-PA), Senator Richard Burr (R-NC), Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA) for being champions of the ABLE Act and people with Down syndrome. Rachel’s Pink House* is within reach.

Little Pink Houses Make Us Able To Give Thanks (Reprinted from 11-27-13)

I must admit that these past few days I have struggled with some things that have caused me not to have an attitude of gratitude. Without going into those issues, there are a few other issues that could cause me to really get in a funk. For example, I could be very irritable that the ABLE Act of 2013 has more bipartisan support than any bill on the Hill and it is STILL not going to the floor.  Or maybe my attitude could be spoiled because we’ve been trying to get this bill, a fair bill that is fiscally responsible and the right thing to do, to the floor for a vote for too many years.  I could also be in a funk because friends I’ve never met on Facebook are having to file lawsuits to get their children in general education classrooms.  IDEA was passed in 1975 folks.  I could be in a funk because Rachel wants to live in a pink house.  Period. Maybe the funk is induced because she might want to be a Kansas Jayhawk instead of an Arkansas Razorback. The latter actually brings more disappointment to my dear husband Jonathan than me.

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I believe happiness is a choice though. In my book there aren’t many character traits more desirable than being grateful and giving thanks. I just think it is part of being a good human being and realizing how blessed we are. So today I’m choosing to be thankful. I am thankful that in spite of all of our struggles, we live in the greatest country in the world. I’m thankful for the freedom of speech and the right to vote that allows me to contact media and legislators and plead my/our case. I’m proud that I have the freedom to write a blog and to responsibly say whatever I want to. I thankful that my daughter lives today and not 50 years ago. Today, there is a law that says she has the right to a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). While in may not always be easy and we may always be pushing for more rights, at least we have a law behind us that gives her the opportunity to be in the public school. Fifty years ago that wasn’t true.  I am thankful for those parents and self advocates who sacrificed so that Rachel has the rights and opportunities she has today.

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I am thankful that Rachel can dream about pink houses and that we can dream with her about going to college. I am thankful that we have the ability and the right to go to our Congressional leaders and say “Rachel wants to live in a pink house. Rachel wants to be a Kansas Jayhawk or Fighting Pickle of NC School of the Arts. We need your help to get there.” I frequently exercise my rights by contacting political offices.  It is a right and a privilege that many on planet earth are not afforded. Are you thankful for that right, responsibility and privilege and do you let your voice be heard?

Do you truly understand that freedom is not free?  This Thanksgiving I am thankful for the men and women past, present and future and their families who have sacrificed so that I do have these rights, who have sacrificed so that Rachel can dream, who have sacrificed so that you can exercise your freedom of speech even when it differs from mine.

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Pity party gone. I am thankful for dreams of pink houses that remind me that I am truly blessed and truly ABLE to be thankful for all that I have.

Small group activity at church - thanks poster

Small group activity at church – thanks poster

Pass the turkey and #PasstheABLEAct, please.

Happy Thanksgiving.

* Background: In 2012 Rachel made her first trip to Washington DC as self-advocate. She declared to Senator Moran that he needed to co-sponsor the ABLE Act so she could live in a pink house. It has become the symbol of her march toward independence.

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Thankful for Great Role Models

I have blogged about the value and really the gift of good mentors in Rachel’s life.  As I prepare to cook some Thanksgiving favorites, I am reminded of one of the great role models in my own life. My seasoned readers know that I grew up in rural Arkansas. I grew up in Joy, Arkansas in the heart of White County which is located about an hour northeast of Little Rock. I usually say I am from Rose Bud because that is the school I graduated from. Then, I tell people that I am actually from Joy, a suburb of metropolitan Rose But, but we did not have a post office or a school. Trust me when I say living in Johnson County, KS is pretty different from growing up in Joy, Arkansas especially 35+ years ago. But then and now mentors and role models are essential.

The person I most often think of as my own role model is my 4-H leader. The 4-H program was my ticket to travel and to learning how to do so much of what I do now. I learned how to give speeches in 4-H. I learned how to run meetings in 4-H. I learned how to run events and ask anyone for anything.  They might say no but they might say yes. I had the opportunity to visit college campuses, meet elected officials locally and on the state and national levels. I had the opportunity to call the Hogs on the United States Capitol steps and get my picture made with the Arkansas’ great Congressman John Paul Hammerschmidt. That’s where I learned about grassroots advocacy. I have truly needed those skills especially these past eight years of trying to get the ABLE Act passed!  I learned to tell my story and the story of others to make change.

My own 4-H leaders were Wayne and Mae Ann. They moved to our community from another part of Arkansas and farmed. They didn’t have a child our age. Their only child, a daughter, had passed away suddenly. My sister had the idea of asking them to be our 4-H leaders. No one thought they would say yes. But they did and they invested in us. The rest of the story is history. They had a son during our 4-H years and we loaded him up and took him to all our 4-H activities and events. My fundraising skills can be directly traced to them. We had pie suppers, cleaned cemeteries, unloaded grain, and hosted the Mr. & Miss Joy contest to raise money. We also did adopt-a-grandparent projects and cleaned roadside ditches. We worked hard and Mae Ann and Wayne made sure our hard work was often rewarded with fun trips to Six Flags or Silver Dollar City. Fun times.

I was and still am very close to Mae Ann and Wayne. They’ve been at all the important events in my life. They were some of the first people called when my baby brother died. They were there when I got married and when Rachel was born. They love Rachel and she adores them even though she rarely sees them.

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We do not get to see each other much and haven’t since I left there some 35 years ago but that has never changed our love for each other. And their investment in me doesn’t stop there.

So on this day before Thanksgiving 2014 I am beyond grateful for God’s provision of these people in my world. My life is better because of them. I like to think that a lot of lives are better because of them, and that I have somehow paid it forward. Today, I am paying it forward by sharing one of my favorite recipes Mae Ann gave me when I was in high school. It is her Broccoli Casserole Recipe that has been our family favorite and a favorite of many of my friends since she gave it to me. I’m making it for our Thanksgiving meal. I hope you enjoy!

Broccoli Rice Casserole

3 cups cooked rice
1 10 oz package frozen broccoli spears, cooked and chopped
1 T. butter
½ cup onion, finely chopped

1 can cream of chicken-mushroom soup
1 can cheddar cheese soup (or one jar of Cheez-Whiz)
4 oz  (or more) shredded Velveeta (American not cheddar) cheese

Saute onion in butter. Add chopped broccoli and sauté together for about two minutes. Mix all ingredients (except for shredded cheese and pour into casserole dish. Top with shredded cheese. Bake at 350 degrees (covered) for 20 minutes. Remove cover and bake 10 more minutes. Serve. Easily doubled but may want to add two cans of soup for moisture).

NOTES: The original recipe calls for Cheez-Whiz. I trouble finding that so I have changed to cheddar cheese soup and have used Velveeta. I do not use frozen chopped broccoli. I have found them to be tough. I think the secret is in the sautéing the onion, butter and broccoli.

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Good Teachers Teach All Children

Did you know it is American Education Week? Happy week and I hope you will join me in celebrating the gift of teaching. I often say I believe teaching is the highest calling, and I do. Take a minute and send a message, a note or a shout out to one of your own teachers. Then, if you have students in school do the same for one of their teachers.

Rachel has had many good teachers in her 12+ years in the school system. Yes, she is only in the 9th grade but preschool services for her began at 3.  I could write and write about the many great teachers, paras and related services professionals she has had but today I’ll focus on one. Today, I’m going to do a little double duty because Rachel and her English teacher are receiving an award from the Olathe Optimist Club. I think it is appropriate that it is during American Education Week. The Rachel-Ms. C Duo was nominated by one of her high school’s assistant principals. The award criteria states:

Please provide a brief statement about the mentoring relationship between the instructor and the teen and support provided to the teen to assist the student to overcome diversity or excel in one of the following areas, or other as you may designate:
• Overcoming physical or personal challenges
• Academic achievement- high achievement or outstanding improvement
• Athletic achievement
• Leadership development
• Act of bravery

I mentioned Ms. C earlier this year. I suspect when the Optimists developed this criteria they were not thinking of the bravery of both the teacher and the student in this situation. A teacher who reached out to a former teacher and then was brave enough to reach out to Rachel’s parents and say, “I need help. I want to teach your daughter and I am unsure that I know how.” A kiss wasn’t appropriate from this momma, but a pat on the hand and a few stories of how we are going to make this work sufficed. Rachel is brave everyday. As her head is full of so much and by nature of her Down syndrome, she has to work so very hard to sort it all out. She has met the challenge though and moved right along demonstrating to us that she can grasp the important themes in “Of Mice and Men” and “The Odyssey.”  This teacher is brave enough to say “let’s try letting her do this without help and see how she does. Are you okay with that?” Of course, I am thrilled because that embraces our own philosophy.

I believe that good teachers teach. Many of Rachel’s best teachers didn’t have specialized “special education” training. However, they believe that all children can learn and that you find a way to teach them and find out what they have learned. That may not look like all the other colors in the box.

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It may look like coloring outside the lines. Ms. C told me that she was kind of embarrassed for receiving an award for doing what she is supposed to do in her job. My response, “You have no idea….” Ms. C sends me weekly summaries of the plan for the week so we can help Rachel at home. Ms. C sends me study guides – usually ahead of schedule so we have time for Rachel to practice, practice, practice because repetition and familiarity are key. She understands that for Rachel there is a big difference in a multiple choice, matching, or fill in the blank test. She understands that Rachel will rise to the occasion and do her very best if she knows what is expected. She also allows Rachel to come in and chat with her between classes, and Rachel loves this. She helps Rachel to exceed expectations because she exceeds expectations.

Ms. C seems to have embraced our idea of inclusion. Inclusion isn’t just about the classroom teaching. It is about the process. It is about the classroom interactions. It is about others seeing Rachel and others with intellectual disabilities as capable. The long-term rewards for Rachel and other students are immeasurable. I suspect the results will include more jobs for individuals with disabilities and the ability to interact with clients and managers who are different.  I suspect a group of people who will better navigate the course of life.

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Good teachers teach. Today, I was proud to watch as one of those good teachers and her brave student Rachel were recognized as Optimist Stars for believing, dreaming and doing. Thanks to the Olathe Optimist, Olathe South and the Vice Principal for recognizing a “super amazing teacher” and a girl named Rachel who is changing perceptions on a daily basis!

optimist star 2

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Pink House Update

Here I am again talking about that famous pink house. That would be Rachel’s Pink House and not John Mellencamp’s. There’s a solution to my obsession: Congress can just Pass the ABLE Act. When last I blogged about Rachel’s Pink House and the ABLE Act, I gave you a little history lesson via the yellow brick road.

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Today’s update is this. We have 381 House co-sponsors We have 74 Senate Co-Sponsors.  Advocates have been bombarding House Majority Leader McCarthy (R-CA) and Speaker John Boehner (R-OH) and urging them to bring the ABLE Act of 2013 to the House floor for a vote under suspension during this lame duck session. The 113th Congress adjourns on December 12. If the bill is not passed, we start over. We’ve been starting over for about eight years. I’ve spent about eight years of Rachel’s life advocating for this change.

To quote fellow ambassador Kelly Kulzer-Reyes letter to the editor in The Bakersfield California, “Just because my daughter has Down syndrome should not prevent her from achieving her goals. Amelia can work a full-time job, be a productive member of society and pay taxes — but because of these outdated laws placed on individuals with disabilities, people like my daughter are currently being held back in life.” That is the truth for Rachel and Amelia and so many others.

We just finished our 2014 election. The voters spoke. The American people want to see Congress get some things done. As I love to say, they want to see Congress play together in the sand box. So again I plead for Rachel, Heather, Ben, Amelia, Sara and the thousands of others with Down syndrome and other disabilities who have big dreams to achieve. Today, I again say to Congress, please send the ABLE ACT of 2013 to the House and Senate floors for a vote before December 12. Rachel’s got big dreams and we have a few other things to do in preparation for those dreams.  Go ahead now and show the American people that Democracy can and does work. Show them that you can come together and pass a bill that makes sense. The time is now to do the right thing. #passTHEABLEAct and send it to the President’s desk to sign into law. The time is always right to do the right thing!

time to do what is right


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Social Inclusion: 5 MORE Tips for Teachers

Wow! You guys like social inclusion tips. Many of you reached out and wanted to share the first five tips and some of you even wanted to use them in newsletters! This is one of my main purposes in blogging is to share information that might help someone. So a pat on a the back for all of us.  As I mentioned in the original post, I made a top ten list. This blog completes the set and includes the second five of Jawanda’s Top Ten Tips for Teachers.


6. Be consistent in the classroom, playground, assemblies, etc. All students want to know they matter, so being consistent with all students helps them feel like they are being treated the same.
a. If everyone has homework then all students have homework and are expected to do it. Of course someone’s work might be modified, but no one needs to know. All they know is everyone has homework.
b. Keep expectations the same. If students are called out for doing something wrong, then all students should be called out for it. Hence they’re all the same. Students know when they are being treated differently.
c. Do not group students with disabilities together in a section or bring them in as a group. They should be part of their general education class group. Also – if you have noise sensitivity issues, fear of heights, etc. find peers to help students with that.
d. Call on students when they know the answer because students want to participate. Likewise if you call on students without hands up make sure to do the same with those who have special needs. Just gently guide them to the answer. The sense of pride students feel when they answer a question off guard is amazing!
e. When planning activities, outings, parties, etc. be mindful of the child with Down syndrome and health issues, sensory issues, etc. Consider ahead of time who they can be partnered with for a successful experience and that should not be an adult.

7. Basic “Good Teaching” Strategies: Get to know your students. Learn about Down syndrome. Focus on abilities, not disabilities. Be involved in IEP meetings. Share strengths. What is the student doing really well? Where has the student shown growth? Be willing to share thoughts, ideas, and strategies. This is your student and you are a member of the team. :)

8. Listen to their stories and encourage them to share them with others. If a teacher has time to encourage social time, students will foster and embrace it. Remember to give a child with Down syndrome at least 10 seconds to process what you are saying. Sometimes it takes their brains a little longer to pull the information. This is actually a good rule for many people with and without an intellectual disability.

9. Conflict and Adults Being Adults: When there is a conflict with a child with Down syndrome, it is often difficult to get an accurate accounting of what happened. I caution you –

a. Do not call in those involved in one big group. Bring them in separately. Many if not most children with Down syndrome are pleasers. By nature of their disability, they have working memory issues. So when you bring them in with the person who hurt them (physically or emotionally), they become confused and they may say nothing happened. Often they confuse what happened weeks, months or years ago with what happened today. They may also confuse reality with their imaginary life. Some researchers say they see life as one movie, each frame building upon another.
b. Try to find out anonymously from someone who wasn’t involved in the issue.
c. If a person with Down syndrome does something wrong, they should be disciplined appropriately but you must know they understand. You must also learn what the antecedent was. Example: My daughter got in trouble for putting her hands on someone in elementary. She physically tried to move them because they broke in line. That’s not the story the other child told though. Another child went to the teacher and told her that someone broke in line and that’s why Rachel put her hands on them. Rachel should not have done this, but she is a rules follower and sometimes feels it is her job to enforce them! She decided it was her job to move this child to where she belonged.
d. As adults pay attention to body language and listen to conversation and intervene if needed. Contact parents if needed.

10. Outside/extra-curricular activities. If possible, be a part of the child’s life outside of school. For example, if they have a Down syndrome walk or other awareness event, try to participate. If you can or can’t participate, encourage students to participate.
a. Encourage students with Down syndrome to find activities that are not disability specific. Special Olympics, Field of Dreams and Adaptive Sports are awesome. In these venues primarily you will build relationships with others with disabilities. There is a place for these relationships and they are important. But is there a church that sponsors Upward programs that are well-suited for students with disabilities to be included with non-disabled peers? What about the local dance program? Some of these may just work and a family might not think of it or consider it unless you mention or encourage it. This provides a great opportunity for learning for the non-disabled peers and the adults and hopefully builds peer relationships for school and other real world experiences. Rachel has always participated at a typical dance studio and community theater, Christian Youth Theater (CYTKC.) Friends from both places are at her school and they look out for her. One of her CYTKC friends is even her peer mentor at school.

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b. Look for ways to include students with Down syndrome. One of the special education teachers who was at Rachel’s transition meeting noticed that she liked sports. She called and wanted to know if I thought Rachel would want to be the Freshman Volleyball Manager. She coached and she thought it would be fun and give Rachel a peer group. Rachel loved being the volleyball manager! She gave them pep talks and went to the games and has in the teacher/coach a mentor.

I would remind you that most of these tips came directly from teachers who I have witnessed having done a good job with students with Down syndrome. A resource I highly recommend is Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges by Dennis McGuire and Brian Chicoine. It says adults but really addresses issues beginning in adolescence and is just some good basic education.

Many of the things I’ve mentioned could be good for any students and they aren’t new discoveries. Persistence and willingness to take risks are keys. Educators get to see how students interact and are able to give guidance that a family/child needs. Often our friendship woes are the same whether we have a disability, communication disorder or not. However, it is much harder for students with communication disorders to maneuver systems and communicate among so many people in understandable ways. I personally believe that the value of positive peer relationships in any of our lives is not measurable!

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Social Inclusion: 5 Tips for Teachers

A few months ago Rachel and Savanna were invited to present on Social Inclusion.  I was invited to share a little from a parent’s perspective. In one of my many past lives where I did presentations on Buddy Walks, fundraising and/or volunteerism, I started doing Jawanda’s Top Ten List. So I decided for my part I would do a Jawanda’s Top Ten Tips for Teachers. I did one for parents, too. I made my short list and then reached out to many of the teachers and paraprofessionals who have worked with Rachel who I believe have done a good job with the social inclusion piece. Guess what? With a little variance, their tips were very similar to each other. Thanks to all of them for input. I believe they all hold this philosophy:

Teachers should look at the life/social skills gained in the academic setting,
not just the academic material.

Here are my first five tips. Watch for the second five later in the week.  The most important one is #1.

1. Communication
One sentence: If you do not tell us what happens at school, WE DO NOT KNOW! Teachers need to communicate what is going on in the classroom, on the playground, at lunch, anywhere and everywhere at school to parents. Example: Earlier this year a family had the list of spirit days. It was crazy hair day. Mom helped her 7-year-old get her crazy hair. At drop off, she noticed no one else had crazy hair. She went home and contacted the teacher. “Oh we had to switch that. We told the kids. Did Susie not tell you?” “Uh. No.” Devastating to the child. The point is you need to communicate with parents. Our children do not make it home with these kinds of details. Please read my blog Communication 101 For Educators

2. Be a good role model. If you are accepting and expecting that all students learn, then they will and peers will follow. Show respect to all students at all times. Teachers are the role models. If a teacher treats a student with a disability differently, so will the students. I sent out a request to Rachel’s former teachers/paras asking for ideas on how they as teachers promote social inclusion. Being a good role model was mentioned on every one.

a.Use people first, preferred and respectful language with all students and parents. A child is never a Down’s child, autistic child or cerebral palsy child. Everyone is a child/person first.
b. Do not baby talk students with disabilities.
c. Do not do special things like take a child with Down syndrome down the hall to show how cute she is to another teacher or allow them to go into the kitchen of the cafeteria to talk – unless you do this will other students.

3. Peer Buddies-Not just any buddy will do! Be selective in choosing students to serve as a peer buddy. A teacher needs to find students who provide support, but someone who is not just doing things for the student they are supporting. Know students who are firm, friendly and willing to work with students who may need support, but who won’t do the work for them. A little side note – it would be nice if the student didn’t feel like he/she was doing a favor by being a friend to the child with special needs.
a. This cannot be in the classroom setting only. This needs to cross into other activities like the playground, assemblies, specials such as music and P.E. and library. This is especially critical for lunch time, unstructured times and any time the schedule changes or is different.
b. Cooperative Learning Groups not only provide academic opportunities, but social opportunities for all students. Assign appropriate roles and tasks. Think win-win. How can every student in your class participate appropriately?
c. Have all students participate in all lessons. Don’t allow them to just sit. If they look like they’re doing what is asked, then the students think they are. Again hold everyone accountable and they will see everyone as the same.
d. Peers do not have to be same age. Sometimes older students are a better fit. I have seen this in church, community and school. This year my daughter is in high school. The older girls who already have it figured out are really the ones who are supporting Rachel best. The other 9th graders kind of have that “deer in the headlights look” still.
e. Back to that communication thing: Communicate with parents about appropriate peers for out-of-school activities. I know some teachers will bring up confidentiality issues. I cannot address that for each individual school district so I will just say, FIND A WAY! Children with communication challenges cannot communicate with their parents with any accuracy who is kind, who is a good peer, etc. Encourage students to invite their friend with Down syndrome to attend the football game or school dance with them or their group.

4. Peer presentations. If students are having trouble letting others in or understanding their quirks (and we all have quirks!) allow a parent or counselor to present a lesson on the topic. Sometimes that is all other students need is to understand some of the differences peers may present. For Down syndrome one of the best videos is Just Like You –Down Syndrome. There are others and your local group can help you find those. If you do not have a local group, I can direct you to resources. One of my favorite books is “We’ll Paint the Octopus Red,” and I’ve used it up to 3rd grade. I also like to use my peer presentations to recruit for Down Syndrome Awareness activities like the Buddy Walk. In the early years, Rachel didn’t attend the presentations but as she has grown she is a part and helps by using a PowerPoint to tell about herself and invite friends to be on her team.

5. Social groups, lunch bunch, girls group, boys group facilitated by social worker, counselor, speech therapist or other professional. Rachel was in 3rd grade when we moved to our current district. We knew it was important for Rachel to build a peer group. The school actually recommended a lunch bunch facilitated by the social worker. They picked three girls each week to do lunch bunch with Rachel. It only took a few weeks to get through all the girls in her class. By then, we had time to meet some families, too. Between the observations and our input, they put together a small group (five including Rachel) and they had lunch bunch every week the remainder of the year. She is still friends with many of these girls. We continued it for the remainder of elementary.

a. Middle School. When we went to Middle School they continued lunch bunch but they added a girls group. They had Cougar Time (30 minutes at the end of each day used for clubs, assemblies, team building, homework, etc.) The girls group was at the end of the day one day a week. Ideally, these were facilitated by the social worker and Speech Language Pathologist. We dropped speech when we went to Middle School. We initiated this because we thought Rachel was tired of it and we didn’t want her missing core curriculum classes. Social speech is the big issue so this assisted with that. There were two girls with communication challenges (Rachel and another young lady who didn’t have Down syndrome.) They brought in five to six typical girls. It had variety from working on how to initiate discussions in a group to playing games or making a craft. In 8th grade (last year of MS) it became a true social group and a few boys were added to the mix. They are doing some version of this in high school but it is every other week.
b. Rachel looks forward to these groups. In fact, in Middle School because she was so responsible, they gave her the responsibility of passing on the passed to attend the group. This made her beam with pride.
c. General education teachers can recommend few students they think are great peer buddies. They can have a “mini training” on what is ok for them to do and what the students can do for themselves. We also chose more than one buddy so the student would work well with several peers, not just one.

Watch for five more tips later this week.  Please feel to share with teachers, parents, paraprofessionals and the like. Keep in mind that I/we do not have all the answers. Social Inclusion is always a work in progress. We all share frustrations, hurt feelings, challenges and bright shining moments. And I did say all. That means all of us and not just those of us with kids with disabilities.

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Election Day and Down Syndrome

Rachel had ear surgery yesterday so she is home with me today. She is checking her twitter and she exclaimed, “It is Election Day mommy!”  I wish all Americans were as excited as she is. Today is Election Day. I love election day for more reasons than it means the end of political phone calls, mailers and commercials.  I love election day because I believe it is a miracle that we vote in an orderly, civilized fashion in our country.  It is your right, privilege and honor to vote in this the greatest country in the world. Around the globe many people do not have this opportunity, this right or privilege. Many who do have the opportunity vote in fear or are coerced. Voting is not civilized in many, many places.  So today on this election day, please vote.  Regardless of your political affiliation or convictions, I say VOTE! Part of what makes America great is this melting pot of thoughts and ideas.

Part of this right and privilege also involves educating yourself, as best you can, on the issues and the people making promises to be your voice. As evidenced by the commercial airways, mailbox and telephone, potential candidates are telling you how they are different from who and what you see currently holding office.  Others tell you all of the opponent’s bad traits. Some twist voting records and statements to fit their claims. It is hard to get an accurate picture. Find a way to research who best represents your priorities and convictions and the issues you care about. I like to listen and read many different opinions and actually look at voting records.

After you vote and once these elections are over, you can exercise your right to contact your newly elected officials. Whether they be the incumbent or a new face and whether you voted for the winner or not, he or she represents you and works for YOU! Before I was old enough to vote, I learned about citizenship and advocacy through the 4-H Youth Development program. Yes, a girl from the Joy 4-H Club in White County Arkansas got hands-on, in person advocacy training and had the opportunity to visit with Congressman and Senators and even meet and interact with the Governor. I didn’t know then how important those skills would be almost 40 years later when I fix my heart on passing legislation that benefits not just my daughter, but hundreds of thousands of individuals with disabilities and their families.

Regardless of the outcome of the elections, there is much work to be done on behalf of Rachel and others with intellectual disabilities. On the state and federal levels, we have plenty to discuss with our elected representatives. IDEA (Individuals’ with Disabilities Education Act) is due for re-authorization. We need our fair share of funding from NIH. The Seclusion and Restraint issue makes the hair on my arms stand up. There are issues with fairness in transplants for individuals with disabilities. As my friend, Mark Leach pointed out in his blog yesterday, most of our states still need to pass The Down Syndrome Information Act.

Of course the issue foremost in our house is the issue of that pink house,  the ABLE Act of 2013. Almost eight years of hard work, lots of discussions with our officials and their offices and many trips to The Hill have brought us to where we are now. Next week, Congress will re-open in a lame duck session. Congressional champions, self-advocates and Down syndrome advocates are all pushing for Congress to push the ABLE Act across the finish line. So you better believe that win or lose, my two United States Senators and my United States Congressman will be hearing from me and I will be asking them to help us with this push. The ABLE Act is the right thing to do regardless of political outcomes.

Rachel has had the honor of meeting and interacting with her United States Senators, her Congressman and her Governor. She considers them friends. That’s how it should be. She has been living an ongoing life lesson in citizenship and advocacy. Rachel believes she is getting her pink house. And so do. I!


Rachel's first tip to the Hill and her personal Capitol tour.

Rachel’s first tip to the Hill and her personal Capitol tour.

Rachel's 2nd trip to the Hill she had the honor of presenting awards to her friends, Senator Jerry Moran and Congressman Kevin Yoder.

Rachel’s 2nd trip to the Hill she had the honor of presenting awards to her friends, Senator Jerry Moran and Congressman Kevin Yoder.

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Friendships: Rachel’s Top Eight Thoughts

This past weekend we had the opportunity to be a part of the Techniques for Success Conference. They (the collective efforts of Down Syndrome Network of Montgomery County (DSNMC) and F.R.I.E.N.D.S. of Frederick) do an incredible job with this event, and we were honored to be invited. On Friday night, there were 120 parents and Saturday they hosted 350 educators. There were a variety of topics. Rachel and Savanna were invited to present on “Social Inclusion.” We took Rachel’s “I Love My Life” presentation and tweaked it a bit. We added a few slides for Savanna to present. I did two tip sheets – one for parents and one for teachers on how to promote social inclusion.

Rachel’s standard presentation always says that she loves friends. In her presentation she declares, “My favorite thing to do is to hang out with friends.”

tfs my favorite thing to do. jpg

She doesn’t care what environment either. From church to school to movie dates, plays, sleepovers and board games, this girl loves to be with her friends. Similar to most 15-year-old girls I predict.

Part of our tweaking was a segment called “What I Like From Friends” where Rachel lists some things that she wants from friends. This is her list:

  1. Invite me to sit with you at lunch.
  2. Invite me to birthday parties.
  3. Invite me to sit with you at ball games or pep assemblies.
  4. Invite me to join your group for the school dance or party.
  5. I am not a baby. Please ask me if I need help or I will ask you to help me.
  6. Please slow down when you walk. It is hard for me to keep up sometimes.
  7. Slow down when you talk and wait for me to answer.
  8. Please sit on the lower bleachers with me at activities. I am afraid of heights.

Nothing earth shattering, quite practical and pretty typical.

how to be my friend14

During these final days of Down Syndrome Awareness month, I thought it would be awesome to let a person with Down syndrome tell us what they like in friends and how someone can be a friend to them. Rachel would say it is so easy and it is super fun. In fact Savanna said, “It is fun to get to know someone with Down syndrome. There are many plus sides to being friends with someone with Down syndrome. First, Rachel is one of the most loyal friends that I have. And second with Rachel, there is never a dull moment.”

Trunk or Treat 2012

Trunk or Treat 2012

Rachel and Savanna rocked their presentations, too. Late on a Saturday afternoon, they were all that stood between the teachers and getting home.  About 350 teachers stayed and gave the girls a standing ovation. Now let’s put it into action. Rachel would say, “That would be super amazing.”

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Inclusion: Hard Work or Magic Pills?

I have several workshops I do about inclusion. I have done them in a variety of settings. A couple of years ago I decided I was going to add a new opening.  It goes something like this:

“This workshop is Inclusion Doesn’t Have to be Somewhere Over the Rainbow. If you have come here looking for something easy or a magic pill, you should go ahead and go down the hall to a different workshop because that doesn’t exist. Inclusion is hard work.”

inclusion hard work  rainbow

My impetus for this opening occurred after reading evaluations on a speaker. A group I was involved in hosted a behavior consultant. I had heard her before and she did her usual great job. Her evaluations were consistently in the highest range with one exception. One of the evaluations was low across the board. I began reading the comments and finally it said, “I came here looking for a magic carpet answer to my child’s behavior problems, and I didn’t get it.”  I would say that person has unrealistic expectations.

Sometimes I get the same kind of feedback from my blog and presentations. I try to take a positive but honest tone. Most of my readers don’t know what goes on behind the scenes to make inclusion work. I’m not trying to scare anyone, but it is hard work. Should it be so hard? No and if we lived a perfect world, it wouldn’t be so hard. But we don’t and it is.

At the beginning of this school year, I was meeting with one of Rachel’s teachers. I was showing the teacher the flash card system we use to help Rachel with her classes. The teacher looked at me very intently and said, “Do you do all of these flash cards and all of this prep?” I responded that for the most part yes I did. The teacher responded, “But that is not your job.” My response was that it may not be but I will do whatever I need to do to help Rachel be successful and if not me then who? In my selfish way, it actually made me feel validated that someone noticed. There are days when this journey can be exhausting.

There are a lot of hard things in life though. Don’t misunderstand my intent. I’m not condoning this reality of non-inclusion and non-acceptance. There are still so many systems, attitudes, perceptions and even laws that need to change. IDEA (Individuals with Disabilities Education Act) was passed in 1975. Sometime this year I might have reminded a few people of that and questioned why we were even discussing whether Rachel would be in a general education classroom. In theory, it shouldn’t even be a question.

inclusion hard work george & rachel

The lack of meaningful inclusion extends past the education setting though. Beyond the walls of school the first place many parents of children with disabilities are directed is to segregated choirs, sports and church activities. Many of you would join me in sharing stories of the hurts and challenges of mainstream community activities and church. It would be easier to go another route. So if you are looking for easy, there is probably an easier path. However, I haven’t found a magic pill or magic carpet yet.

I believe in honesty and want you to know when you choose this road less traveled that it won’t be easy. I try to focus more on what is working for us and share that with the hope that it will give someone else an idea, open the eyes of someone to the abilities of a person with Down syndrome, change a teacher, or give a parent who is weary and exhausted hope. I have seen this happen and it gives me inspires me to keep on sharing. Jonathan and I believe that Rachel and others with Down syndrome and other disabilities have a God-designed right and by virtue of being born in the United States of America have a citizen’s right to being treated with respect and dignity. We believe she and they should have the opportunity to live real lives pursuing their hopes and dreams like their friends and families and alongside their families and friends. We do this for Rachel and for those who can’t, won’t or don’t do it. It is hard, but we think it is worth it. I think Rachel is happy that we think it is worth it. Actually a better way to phrase that might be that we think she is worth it.

And guess what? No one has ever left and gone to another workshop.

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1st Quarter of High School in the Books!

Thought I might give an official update on Rachel’s first quarter of high school.  We just had Parent-Teacher Conferences.  We are in pretty close contact with Rachel’s team on a regular basis. It wouldn’t matter if we had seen the teachers 10 times that week, Rachel insists that we go to Parent-Teacher Conference and meet every single teacher.  I want to tell you a little of what was heard at her conferences.

“She is doing great!  She is one of my best students. I keep telling you (Mom) to quit fussing because she is doing great.” I might have mentioned that I can be a bit driven. “I wish all of my students had some of her enthusiasm.”

“She brightens my day every day.”

9th 1 day rapping

“She works so hard.  She is very independent. It would be helpful if she would invite the paras to help her from time to time.” I think I MIGHT have heard this before like since she was old enough to say “I do myself, mommy.” She is her mother’s child. We have a plan though. Part of being a responsible person is asking for help when you need it so she made a deal with me that she would do this. We’ll see …..

We have hit the jackpot with our teaching team. They have been great and continue to try to figure out how to best meet her needs and work with us so she will have meaningful experiences. One was teary because she is so proud of the good work Rachel is doing. One said, “Rachel = you are my favorite student but don’t tell.”

Some other bright spots for mom and dad. English. Her teacher is awesome. You may remember she contacted me before school started because she wanted to know how to best teach Rachel. You can tell how proud she is of Rachel’s work. “Of Mice in Men” is not Rachel’s favorite book. She says “they use inappropriate language.” She is right. Still, she read and worked very hard on the assignments. Book test time came and the teacher and I chatted. Seems that usually Rachel goes out to take her test so questions can be clarified or whatever. The teacher and I agreed we should have her do the 40 question test with no para support. If she bombs, we’ll adjust. She studied for several weeks because a key for Rachel’s success is a good study guide and knowing the test format (multiple choice, fill in the blank.) This teacher has been very accommodating.  Rachel made 94 on her test.

Then, the biology teacher told us they would be doing chromosomes and cell development and they talk about Down syndrome. She was very excited and may show “Just Like You – Down Syndrome” to the class. She has a fabulous idea. “Do you have Rachel’s karyotype? I think it would be awesome to show them Rachel’s karyotype. It would be a great learning opportunity for our students to be able to see the tiny little difference on the chromosome.” Don’t know if my readers share in my enthusiasm. I love that idea but now I have to try to find the lab work? This biology teacher is awesome, too. She works hard to be sure that all the students feel like they are a part that they are meaningfully included academically as well. I’m impressed.

Last and probably our favorite discussion was the teacher who told us about the play they are writing. Rachel is writing a play about Bethany Hamilton and “Soul Surfer.”  It is for reading. She has made the teacher the shark and it was hysterical hearing him tell about it. The class is small and one of the other students in the class is quite introverted. The teacher said that Rachel has made it her mission to help him out of his shell. The teacher told us how she encourages him and invites him to participate. He has never wanted to read aloud to the teacher, but he has observed Rachel and has now ask the teacher if he can read outlook to him, too.  The teacher thinks it is a very positive impact. So do we.

Another bright spot for mom and dad is our newest case manager. He is working with teachers on modifications and was sharing a study guide for an upcoming test. I had already seen it and said it looked fine to me. He had some ideas on formatting. Didn’t like the way the answers were not presented consistently. I didn’t catch that and it is the small things that make a big difference for Rachel.

Rachel seems to know everyone. She flitted around and talked to all kinds of people. She helped me a bit the PTO table. She is happy and seems well-adjusted. Her daddy and I are very proud of her for her positive attitude, kindness, sense of humor, and work ethic.

School is about more than grades. It is about preparing to navigate life. I have a heartfelt belief that Rachel’s inclusion in the general education classroom is educating and changing perceptions not just of other students but perhaps more importantly, adults. It is teaching a lot of people about navigating life. You could see it on their faces and in their shared pride in how she was doing. Oh and she did have all A’s.

Inclusion works.


Rachel on the sidelines as volleyball manager

Rachel on the sidelines as volleyball manager


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