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

 

Share Button

Rachel Prayers and Homecoming

Been on my 25th wedding anniversary cruise so I’ve been off from blogging for a bit. More on that another day – maybe.  While we were away, Rachel had her first high school homecoming week including the homecoming dance. Not how I would have planned it but the school changed the date after I booked the cruise. What to do?  Call in my mom and call on many great friends like Rachel’s Bethany, Rachel’s “Lexi” (alias J-Lo or Leslie), Ms. Cox for overall consultation, Savanna’s wonderful mom who assured me of smooth sailing and it was. Thanks to all of them. Savanna invited Rachel to be a part of a group of friends for the dance. This is a picture of a few of the pretty girls.

hc 3 girls

And one of my favorites.

hc feet

Everyone pitched in. The Vice Principal even sent me this picture from the dance floor –

hc dancing

We had reminded Rachel that the vice principal was not her personal assistant! Reports say that she danced the night away. That’s my dance queen girl.

Earlier in the week for Where’s Waldo day, Rachel won an award from one of the best costumes.

125

When I got off the ship and got reconnected, I called Rachel. She exclaimed, “I miss you mommy.”  Then, she told me a little about the activities and she said, “I was sad at the dance. I not have a date.” Mind you we have discussed this ad nauseum. “Really, what did you do?” “Andrew’s mom talked to me.” Andrew you may remember is the young man from social studies last year who was happy to have Rachel in his wagon train group. His mom and Rachel have connected as friends, and she too had assured me she would check on Rachel at the dance.  “She talked to me and I am okay.” All good.

Upon return I have realized one of the things I miss most when I am away from Rachel: her prayers. Our friend Sharon says that Rachel has the gift of counseling and comfort. I would agree. Twice yesterday she prayed and thanked God that she was on student council. “I love being on student council. Thank you for letting me be on student council.”  She told me that she had been on her knees with her picture of Grandma Susan praying because she missed her. Then, during her bedtime prayers she thanked Jesus for student council again and then she said, “Thank you for Ashley. I love her very much. She is a great president and a great friend. I am so glad to have my student council friends and get to help our school. I love Olathe South.” Then, she went on and said, “Please help Allie feel better and her brother Zachary too. Thank you for my Sunday school girlfriends, Jesus. I am glad to have good church friends.” Finally she said, “Thank you for bringing my parents home. I hope daddy has fun in Memphis. I miss them very much. Amen.”

They don’t tell you about sweet prayers and moments like this when they give you that Down syndrome diagnosis do they?

 

Share Button

6 Ways You Can Support Someone With Down Syndrome

Since we learned that Baby Rachel had Down syndrome, I must say our friends have been her champions. They have supported and loved us in many tangible ways. Along the way, we’ve added new friends who have also jumped on Rachel’s Team. While living in Memphis, we had the opportunity to work with Variety Children’s Charities and met the Tillman and Ferris families. They dedicated time and resources to children with Down syndrome and other disabilities in the form of fundraising and awareness. One day Chris Ferris and I were emailing about “The Wild Game Dinner Fundraiser” and I said, “Gotta go now. Buddy Walk duties to attend to.” Her response was, “What’s the Buddy Walk and can I help?” Of course, the rest is history because all friends get persuaded to join our efforts. I laughed when I read the email because she actually inquired as to how to help. I’m sure many of our friends would be hiding and hoping that I had forgotten them and their pocketbooks! Chris, a mover and shaker kind of gal, became one of the Buddy Walk’s most dedicated volunteers.

wgd 2006 chris ferris

 

wgd 2006

Seriously, many friends want to know how they can support Rachel and others with Down syndrome. Many of our best friends do not live nearby, but I have ideas regardless of where you live. Here are six ideas.

  1. If you have a student at your school with Down syndrome, ask for your child/student to be in their class. If you are an educator, ask to have that student assigned to your class and work with the parents to make meaningful inclusion work. If you don’t have a grade level peer with Down syndrome, maybe there is someone with another intellectual disability in your school and you could make that same request for that person.
  2. Invite someone with Down syndrome to go to the Friday night football game, bonfire, homecoming dance, lunch, pep rally or other school events with you and your group of friends or family. Communicate with the individuals parents. And then, be responsible and watch out for them so their parents won’t have to worry.
  3. Walk in the local Down Syndrome Awareness Walk. There are Buddy Walks and Step Up for Down Syndrome Walks all over the place. I think of our friend Melina  (Bat Mitzvah – Just Like You) who has organized a team at the Chicagoland Buddy Walk (click here to join her efforts.) Go Melina and yeah for Down Syndrome Awareness! If you can’t walk in one of the walks, make a donation in honor of Rachel or someone else with Down syndrome.
  4. Support Down Syndrome Research by making a donation to the LuMind Foundation which is dedicated to research for individuals with Down syndrome.
  5. Do you own a business? Consider being a sponsor for a Down syndrome walk or other event. I don’t want to start listing names here because I will get in trouble! This is a great way to get your name out in the community and someone who cares and you can support a great cause. You might even organize teams or volunteers to be part of the event.
  6. Share the Just Like You-Down Syndrome video with friends and not just on Facebook. Friends, civic groups, schools, church, youth organizations are all opportunities to educate and spread awareness. Several of Rachel’s friends around the country have shown Just Like You at their schools. Many have no one at their school with Down syndrome but they wanted others to see their friend Rachel! Rachel and her parents consider that a great honor.

There are many other opportunities to spread awareness and support individuals with Down syndrome.  I hope you will choose one or more ways to support Rachel and others with Down syndrome.  Rachel would think that is “Super Awesome!” If you need more direction, contact the National Down Syndrome Society, National Down Syndrome Congress, or Down Syndrome Affiliates in Action. They can direct you to nearby affiliates or other efforts.

 

 

Share Button

Our Down Syndrome Journey Began in 1999

October is National Down Syndrome Awareness month. I spend a good amount of time year round trying to promote positive public awareness of the abilities of individuals with Down syndrome.  Thirty years ago President Ronald Reagan declared October National Down Syndrome Awareness month. So during this month advocates, family members, friends and organizations will all do their best to educate you about individuals with Down syndrome. I have noticed many on Facebook posting posts about when their journey began. I thought I would re-post our beginning for anyone who might have missed it. The original entry was titled “A Glimpse of God’s Grace.” Throughout the month of October, I will continue to post and re-post about Down syndrome awareness, education and I hope, inspiration. Now “A Glimpse of God’s Grace” where our journey began.

baby rachel pink jaffe

A Glimpse of God’s Grace

February 5, 1999 was no ordinary day in my life.  I brought my 34-year old husband Jonathan home from the hospital.  Doctors had successfully removed a tumor the day before.  We were both almost giddy as friends and relatives called to check on him. Both of us were relieved that this ordeal should be out of our way by July when our first baby was due.

While entertaining inquiries about Jonathan, my doctor called and left a message for me to call him at home.  I had an amniocentesis (prenatal diagnostic test for certain genetic abnormalities) two weeks earlier.  I reasoned that my doctor was calling to tell me that my baby was perfect.  Today, I can recite word for word the conversation we had: “Jawanda, this is Dr. M….  How are you?”  I replied that I was tired and a bit nervous about his phone call.  “Jawanda, I’m afraid I don’t have very good news.  There ain’t no way to sugar coat this.  Your baby has Down syndrome.”

A few seconds of dead silence and I started to barter with him.  I pleaded, “The amnio is wrong and maybe I could have another one?” The amniocentesis is an almost 100% accurate test, but in my heart I wanted to bargain.  I just couldn’t believe this was happening to us.  After everything we had been through with Jonathan’s cancer, this just couldn’t be happening.  My doctor said we needed to discuss our options. I tried to say that we would not consider terminating this pregnancy. My doctor and I had discussed this. I didn’t have the amnio so I could terminate.  I had it so I could be prepared if something was wrong.  I just never believed there would be.

I knew very little about Down syndrome, and what I did know was not very promising. I was paralyzed by the fear of what she would be unable to do. I could not imagine what she would be like or what my life would be like. All that I imagined was pretty bad.  As a person of deep faith, I felt totally and completely separated from THE GOD I had trusted. The next morning as I sat out my patio looking at the overcast sky, I heard these words, “Jawanda, I know you are angry at Me, and scared and unsure, but I am still the God who has the plans to prosper you to give you a hope and a future”. My favorite verse, Jeremiah 29:11.  I know it sounds crazy, but it was truly as though God was audibly speaking to me in my backyard.

Three days later I looked in the mirror and said, “Time to get over this pity party.  You need to get busy.”  And I made the conscious decision to learn everything I could to help my unborn daughter become a productive and contributing member of society. This was my new call, and I had a huge learning curve.  In my paralysis, the faith that had been cultivating for my almost 38 years, sustained me.

Most people have no idea what they were doing on February 5, 1999, yet it was truly the defining moment in my life. Our story changes every day. Rachel is a beautiful, independent young lady full of life and fun. Through Rachel I get a glimpse of God’s grace that most people aren’t privy to on a daily basis. You see, 15 years ago I didn’t know that she would have the sweetest voice I ever heard.  I didn’t know what it would be like to have that tiny little hand reach up to hold mine. I didn’t know that she would light up a room with that smile and those sparkling eyes. I didn’t know because my plans are not God’s plans.

I am not now nor will I ever be that person who says, “I can’t imagine my child without Down syndrome. I wouldn’t change him or her if I could.”  I couldn’t love her more, but I would give almost anything to take away that extra chromosome.  Still, I know that my worldview, my faith view and my people view is richer, fuller and different because of Rachel and this journey we have embraced.  While I know that God is touching lives through her, the first life He had to mold was and is my own.”

com appeal baby rachel 00

I invite you to join me in celebrating the lives of individuals with Down syndrome and the beautiful lives they live. I also hope you’ll check back and read more stories from our amazing journey and learn more about Down syndrome and how you can make a difference through inclusion and acceptance. 

Share Button

Rachel’s More Than a Bill on Capitol Hill

Back in 2009, “School House Rock” was Rachel’s first show with Christian Youth Theater (CYT) Kansas City. Here are a couple of pictures. I love her expression in this one.

shr expressive. jpg

And I love that the prop had her name and initial on it in this one.

shr box name showing

It was a great first show for our family. Saturday afternoon Rachel went with our friends the Stricklers to see the 2014 version of CYT’s “School House Rock.” As a little aside, you may remember that Andrea Stickler is Rachel’s peer mentor at her high school. When I was searching for Rachel’s School House Rock photos, I found this one that I didn’t even knew existed.

shr w andrea

That’s Andrea playing the part of George. Perhaps a little foreshadowing? Before Saturday’s outing, Rachel and I were talking about the show and singing a few of the songs. Our favorite is “I’m Just a Bill” which Andrea sang in the 2009 production. We were singing it and I said, “Rachel, what bill is on Capitol Hill that we know about?” She said, “The ABLE Act. Pass the ABLE Act so I can get my pink house.”  I reminded her that it had been on Capitol Hill for about eight years. Just hit me that is several years longer than she has been singing this song!

Rachel started advocacy at a very young age. She was almost three for her first trip to the Tennessee State Capitol for “Disability Day on the Hill.” All or part of our family went every year. She was a tiny little thing and cute as could be. She was a good girl but she was tired by mid-afternoon so her daddy found a seat in the main corridor while I went to finish visits. I came back and found them surrounded by a crowd. Apparently, she had been visiting with legislators, other advocates and lobbyists. Jonathan said, “We should have just sat here all day. We’ve seen everyone. I was able to give out information to several legislators.”

When she was about seven, we were visiting legislators for that same occasion. We walked in an office and she bypassed me and went straight to the legislator. She stuck her hand out and said as clear as could be, “I’m Rachel. I am fully included in my first grade classroom.”  I was so stunned I had to gather myself.  I was recounting the story to a fellow advocate and mentioned that I was surprised by this. Apparently, she really does listen to what I say. My friend said, “Yes, she listens and I am sure she is happy to be in the classroom with her friends.” The friend had a twinkle in her eye that was not lost on me. Rachel understands a lot more than we sometimes realize, too.

The benefits of inclusion and advocacy efforts cannot be overstated. They are often intangible. They are often non-measurable. They are sometimes seen years down the road when the smartest kid in the class is managing his own company and he gives the girl with Down syndrome a job. Or when Rachel connects “I’m just a bill” to the actual ABLE Act that for which she has advocated. Or when the ABLE Act is passed. Or when the talented, beautiful girl from a CYT show wants to be Rachel’s peer mentor. That doesn’t happen if you are always in separate classes, in your own hallway, or in segregated activities. Truly, Rachel is more than a bill on Capitol Hill.

 

Share Button

Best Keep People with Down Syndrome at Home

This is a picture of Rachel from 2001.  It was taken at my friend Vanessa’s farm. I love it because it captured then and now her personality.

rachel a vanessa farm

Sometimes when we face ignorance and stupidity, I go to the picture box and reminisce. I find comfort and God’s wisdom there somehow.

Over the past week there was an outcry in the Down syndrome community regarding a letter to the editor in Fredericksburg News Post.  The letter was from Gary Jenkins, brother of Sheriff Chuck Jenkins of Fredericksburg. Brief history: January 12, 2013 Ethan Saylor went to a movie. He had gone to many movies. He didn’t come home. He died at the hands of three off duty law enforcement officers. Ethan Saylor was an adult man with Down syndrome and he died from a crushed larynx, asphyxiation. You didn’t know? He was just an adult man with Down syndrome. He was a loved son, family member and community member. The media didn’t cry out for justice. On Monday the Huffington Post picked up this piece Mardra Sikora, According to Jenkins, Best to Keep a Person with Down Syndrome at Homes.

I’ll let you read the pieces yourself and come to your own conclusions.  I would like to say that I do not believe this mentality is indicative of all people in this community, and I do think that training is a step in the right direction. No more of my commentary on that though.

As I saw this unfold and as I now read this, I can’t help but think “this could be Rachel.” She has Down syndrome. Do you think I should keep her home?  Then, I received this from a good friend of my who teaches in Arkansas.

Just wanted to share with you the impact that Rachel makes, even when she doesn’t realize it. I am currently teaching a Leadership Service Learning class. This week we are examining the Character Trait of Respect. Today I introduced to the students that no matter who you are, respect should be given and how everyone needs to make a difference in whatever way they can. Then we talked about respect through diversity and how we are all alike. Then I showed them the “Just Like You” video which opened great discussion about all that Rachel does to bring respect for others. The kids thought it was awesome and many said they had learned a lot through the video. I will be interested to see how this discussion continues throughout the week.”

I don’t think Rachel should stay home.

Share Button

Rachel Runs for Student Council

Rachel is running for Vice President of Student Council at her high school.  The election and results are today. When I contacted the sponsor, I told him if she didn’t win there would be tears. Just like if she isn’t cast in a show, there would be tears. Life lessons and I do not believe because she has Down syndrome she is immune to such life lessons.

fb stucco poster

We have made posters. Lots of posters. We gathered friends to make posters.

poster makers. stucco

We have tweeted. Friends have re-tweeted. We have Instagrammed. Friends have liked and pledged support.  We have posted on Facebook and friends have re-posted and campaigned for votes via Facebook. She dictated her speech. We put it on paper in big letters. Her friend and peer mentor Andrea went with her to make the speech video. It will be played today.

This morning I picked up two friends, Savanna and her older sister Sierra. Both have been a big help. They were all meeting a group of girls who would help hand out candy campaign cards that said “Vote for Rachel. She’s bursting with school spirit.” The other one says, “Be a Smartie. Vote for Rachel.” Starburst and Smarties are attached to the cards respectively. I sent a bag of Hershey’s kisses for a little extra help.

hanging stuco posters

This morning I said, “Rachel today no matter what happens I want you to remember our verse.” With the biggest smile, she said “Do not be afraid because God is with me wherever I go.”

I have no idea who will win, but what I wish I had a picture of was of Sierra carrying bags of candy, and Savanna with bags of candy in hand helping Rachel out of the van and helping her with her bags. In her quiet way. Savanna was doing her on campaigning. She wore her Step Up for Down Syndrome shirt with “Rachel’s Razorbacks” on back. And off went “The Girl with the Smile who GOES the extra mile” with her good friend Savanna. That’s what really matters.

 

Share Button

Integrity

Friday I had the honor and privilege of driving down to Fayetteville, Arkansas to attend funeral services for a great man, Jamie Jones. Jamie Jones had been the director of the Baptist Student Union (BSU) on the University of Arkansas campus for 37 years. I had a four-hour drive down alone so I had a lot of time to reflect, reminisce and listen to vintage contemporary Christian music like The Imperials, Dallas Holm and Twyla Paris. Missing was Evie who I first heard at the BSU. That would have been appropriate because when I first heard Evie at the BSU I was trying to hide the fact that I was a frightened freshman from Rose Bud, Arkansas.

My reminiscing got a kick-start on Thursday night. As I dropped Rachel at theater classes, my favorite Styx song “Come Sail Away” came on the radio. I cranked it up. Rachel rolled her eyes, sighed and said, “Mommy, mommy, mommy.”  I told her that my friend Sandy used to play that for me at the BSU and on retreats.

sandy come sail away 82

Styx isn’t quite contemporary Christian but I met my friend Sandy at BSU. He was a talented musician and could play most anything by ear. I can barely tell you where middle C is! Still, he was a dear friend and knew I liked it so he would play it for me. He and some friends had a Christian band, Perspective. I spent a lot of time as one of their pseudo groupies.

I thought of retreats and marshmallow fights, getting tickled about house shoes at morning Bible study and themes like “Building Bridges” that were turned into “out of date, out of style, building bridges what a pile.” We Baptists do have a lot of fun you know! I thought of travels to missions conferences, Glorieta and Ridgecrest. summer missions, and the host of spiritual leaders I met through my time at BSU.

I thought about my friends. My eternal friends who I am still close to and our roots trace right through the Baptist Student Union. Most of the girls I call my dearest friends were part of BSU.

all girls campout

Of course, Jamie Jones, the BSU Director during those years, set the tone. I remember a lot about Jamie. I remember that he was concerned about what might be going on as we camped out for basketball tickets. We were among the originals to camp out for student basketball tickets at the University. I thought of his saying that the music of Perspective hurt his ears. I could see his big smile and yes, his bald head anytime you walked in the building and the calming effect he always had. I thought of Mrs. Best and her white go-go boots. I suspect she may have had them on when she greeted him in heaven. I thought of the passing of friends while we were in school and Jamie’s steadfast love and support during those times of grief.

While all of that stands out, for me personally there are two specific times in my life that I think of when I think of Jamie. Jamie was a lifelong friend and not just my BSU director. When my baby brother died in a sudden tragic car accident, there was a call to me at my parent’s house from none other than Jamie Jones with his deep, comforting voice. Then, there was a call from my college pastor. Jamie had let him know. Then, the day of the funeral, there was Jamie. He had made the four-hour trip to be there to support me and my family. He was joined by a host of friends including BSU directors and contacts from across the state.  I shall never forget. Then when we learned that our unborn daughter had Down syndrome, the call came from Jamie. The comfort and love he extended reassured me that it would all be okay. Anytime I would send Jamie a letter, I could expect a call about three days later. He always called to thank me for the letter. He especially liked pictures. I know I am one of thousands of students he impacted and loved long after we were students in the BSU.

Jamie Jones joined his Savior last week. He was 91 years old. It would be hard to think of anyone who impacted more lives than Jamie. Generations are impacted by his devotion and service to our God, his Lord Jesus Christ. By earthly means, Jamie didn’t have much. Jamie described his wife Beverly as my “greatest earthly blessing” and meant it. They lived a simple life. They were married for almost 67 years. Their love and loyalty to one another was evident anytime you were  them or heard either of them speak of the other. They lived in the same home for years and years and always welcomed you in and shared what they had. They have five children and a host of grandchildren and great-grandchildren. Jamie attended the same church for probably 60 years. He sang in the choir. He served as a deacon. In addition to his very busy job, he attended to widows, orphans and the elderly – as Christ commanded. He was a visionary and his work on Capital Campaigns helped the Arkansas State Student Department establish funds to benefit student work across the state for years.  His work for the University of AR BSU yielded over a million dollars in an endowment that again will allow future students to benefit from the ministry.

I know many generations of students and their children who were impacted by Jamie Jones. We all have funny stories and touching stories about Jamie. I think we would all agree that the word we  think of when we think of Jamie is integrity. It is said that integrity is what you do when no one else is looking.  Webster says “integrity – the quality of being honest and having strong moral principles; moral uprightness.” That’s Jamie Jones. A man of integrity. I am certain that he was welcomed by his Savior with a well-done my good and faithful servant. I will miss you Jamie. What an honor and privilege to have known him and to know that I will see him on the other side!

jamie jones

Share Button

Follow the Yellow Brick Road to Rachel’s Pink House

Congress is back in session this week. Time for an update. When  last we left the ABLE Act, it had unanimously passed the Ways and Means Committee. Next stop House Rules committee and hopefully a September vote to make this law. The ABLE Act’s journey began over seven years ago.

Seems appropriate for me to take a little trip down memory lane and look at ABLE and the Mast family back in 2007 when the bill was first introduced and look at us today. I want to begin by saying that even before Rachel was born we were advised that she could not have more than $2,000 in assets without jeopardizing government supports. You will need to pay money to set up a special needs trust in order to save for her future which, by the way, will probably cost as much as your own retirement. So those of us who need to save the most have to pay money to set up a special needs trust and pay taxes on what is in the trust on an annual basis because we will probably need some government supports to support Rachel’s life? Sounded crazy in 1999 and still sounds crazy in 2014.

In 2007 we were living in Memphis. This is a family picture from Jonathan’s St. Jude marathon in December of that year.

race family 2007

Rachel would finish 1st grade with Mrs. Morphis and start 2nd grade with Mrs. King.  She would be in her third and fourth plays at the Bartlett Performing Arts Center. Here she is as a Sea Horse in The Little Mermaid.

seahorse_07

This is her team at the Down Syndrome Association of the Mid-South Buddy Walk.

buddy walk 2007

That same year I became the first Executive Director of the Down Syndrome Association of Memphis and the Mid-South.  The Financial Savings Accounts For Individuals with Disabilities (FSAID) was first introduced in Congress by Congressman Ander Crenshaw (R-FL) and Senators Bob Casey (D-PA) and Orin Hatch (R-UT). This was the beginning of an almost eight year march to pass a common sense law so individuals with disabilities and their families could save like all other Americans.n This was the beginning of today’s ABLE Act.

Since that time, here’s a little of what’s happened.

  • Some version of the ABLE Act has been introduced in four Congresses.
  • Jawanda Mast reached out to Tennessee Congressional delegation for support of this legislation.
  • The Mast family followed the yellow brick road and moved to Olathe, KS

dorothy rachel w basket 08

  • One or more members of the Mast family visited Washington DC five times to advocate for this bi-partisan bill and other legislation that would benefit those with Down syndrome.
  • There have been many trips to the home offices of the Kansas Congressional delegation.
  • The Buddy Walk on Washington and the National Down Syndrome Society (NDSS) Ambassador program was initiated by NDSS as a means of becoming more effective in advocating for federal and state laws that benefit individuals with Down Syndrome.
  • 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.

moran_yoder awards

  • The Achieving a Better Life Experience (ABLE) Act* of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by Senators Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Representatives Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX).
  • Our  Senators Jerry Moran (R-KS) and Pat Roberts (R-KS) and Congressman Kevin Yoder (R-KS) are among the 75 Senators and 380 United States Representatives co-sponsoring this bill.
  • No bill on the Hill has more bi-partisan support.

In 2007 when the ABLE Act journey started, Rachel turned 8. This year, 2014, she turned 15 and started high school.

bw07RMflower9th 1 day lunch

She was in her 15th play, Shrek the Musical.

teresa rach shrek 14. jpg

This is our family’s picture from last year’s Down syndrome walk.

fam suds 13 best crop

It will be only a few short years until Rachel will be pursuing some type of post-secondary program. We hope that involves the University of Arkansas. She’s thinking the University of Kansas and that would be okay too!  A few short years later, she will be needing a job and will want to be living in that pink house. Hopefully, she will be able to have a job that helps to pay for most of her needs. Being a realist, I know that she will need some government supports to be able to have post-secondary training, to become independent and live her dreams.

So today I say to Congress, please send the ABLE Act of 2013 to the House and Senate floors for a vote. Show the American people that Democracy can and does work. Show them that you can come together and pass a bill that makes sense. Pass the ABLE Act so Rachel can follow the yellow brick road right to that pink house.  The time is now to do the right thing. #passTHEABLEAct and send it to the President’s desk to sign into law NOW!

Give us something to really celebrate during Down Syndrome Awareness Month in October.

#passtheABLEAct now!

 

* The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647). The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. 

The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. – See more at: http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/#sthash.TIRnLFV3.dpuf
The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX).  – See more at: http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/#sthash.TIRnLFV3.dpuf
The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX).  – See more at: http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/#sthash.TIRnLFV3.dpuf

 

 

 

 

Share Button

I’ll Take Mine with Down Syndrome, Please

The debate rages on. A few weeks ago biologist Richard Dawkins caused the Down syndrome community to go into full attack mode. In response to a woman’s hypothetical question about whether to carry to term a child with Down syndrome, he wrote on Twitter: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”   He went on to say that his view was “rooted in the moral principle of reducing overall suffering whenever possible — in this case, that of individuals born with Down syndrome and their families.”

This is not new.  Back in 2011, I wrote the blog post below in response to comments by a healthcare professional about aborting babies because they had Down syndrome. In July 2013, I wrote the blog “Taking Away the Down Syndrome” in response to the new research that says they may be able to shut down the extra chromosome.  It is my all time top blog in terms of readers. I don’t want to reinvent the wheel today though. I just want to post what I’ve already said. Rachel and others with Down syndrome are not afflicted. They are not broken. Research says that most people with Down syndrome are happy. Their siblings are happy. Their parents are happy. That doesn’t mean it is not hard. That doesn’t mean it isn’t exhausting. It is called living.

So here you go.

I’ll Take Her With Down Syndrome, Please

Reprinted from November 2011

This weekend we traveled to Little Rock to the Arkansas-Mississippi State football game. One of the highlights of fall for me is traveling to the Little Rock games where we spend a little time with my family and my sister, dad, Jonathan and I go to the games. It’s our tradition and I love it.  We ran into a good friend of ours, one we don’t see often but we have common ground way beyond football. She has invested 30 years of her life into children with disabilities. We have some great conversations.  She has a pure love for individuals with Down syndrome and other disabilities. She has a true respect and a beautiful grasp of what all of it means.  She was sharing about a family (no names involved) she had just met who had a baby with Down syndrome.  Apparently some of the early tests showed a high risk for Down syndrome.  A nurse told them the sex of the baby followed with a comment that they might not want to know this because if the test confirmed the “baby was a Downs, they would want to abort.”

Sweet baby Rachel 4 months.

This appalled our friend.  This should appall us all.  We shared with her some stories we have heard from families through the years. Many stories where health care professionals made such judgments and insensitive statements. Many people who have never even met a person with Down syndrome but they feel comfortable interjecting their own personal views on a family during an emotionally fragile time.  We went on to share with her about the new prenatal tests that will be only a needle stick as early as 10 weeks into a pregnancy.  Like us, she is not opposed to tests but she was truly shocked by the stories of how biased information is presented to families and how openly celebratory some seem about “eliminating” the Down syndrome population.

jaffe age 3 looking back

Dr. Brian Skotko had an op-ed on this very subject in USA Today last week.  Under comments, this was posted by a reader: “just can’t imagine why with knowledge ahead of time one would allow the birth of a baby with any major mental or physical handicap to occur. You wouldn’t walk into a Best Buy and say, “Excuse me, I’d like to buy a broken television,” would you? So why would one allow a broken child to be born?”  I had a prenatal diagnosis.  There are days that I don’t like some of the things associated with Down syndrome. I make no secret that given a choice, I wish Rachel didn’t have Down syndrome.  I did not say that given a choice, there would not be a Rachel. I had that option available.  Even on the worst day, I would never want there to not be a Rachel. I hope you followed that.  My question for the broken toy guy is this: What do you do with people who break after we get them here?  Do we then start to determine that this person became addicted to drugs or alcohol so we need to get rid of them?  This person was in a serious car accident and has brain damage and physical limitations now. Do we get rid of her? Perhaps we could also apply that to poor parenting skills and eliminate those who are substandard parents as well.  There are lots of broken people in this world but most of the people I know who have Down syndrome can’t be included in that group.

tq8

For those of you who are Christ followers, a very wise friend said this to me in the early days of our knowledge that Rachel would be born with Down syndrome:  “It is okay for you not to want her to have Down syndrome. That doesn’t mean you don’t want her and that doesn’t lessen your faith.  Even Jesus told his Father, the creator of the universe, “not my will but yours be done” (Luke 22:42). With that, I will take mine with Down syndrome please.

rachel up close at 8th dance

This is a blog hop.

Powered by Linky Tools

Click here to enter your link and view this Linky Tools list…

Share Button