High School: Inclusion in Action

Last week was quite a week for Rachel and our family. Sunday night she finished her 16th show Christian Youth Theater’s Cinderella. She took her Romeo and Juliet test over Acts IV and V. She scored 19/19. She was very excited about her bones worksheet from owl pellets in biology. As a little aside, her biology teacher extended an invitation for her to go on a science trip to Costa Rica. I almost cried and nearly hugged the teacher. The teacher’s response was “Why wouldn’t I invite her?” This is definitely a teacher who gets it and should be teaching others how to include those with different abilities. Some of you understand my elation more than others. Back to Rachel’s week.

Rachel has become involved with an organization called Inclusion Connections. Her involvement is mostly in the summer but the program is unique in it’s peer mentoring approach to activities, building friendships and raising awareness with a vision of turning all that into employment, housing and life opportunities. Thursday night she had the opportunity to be in their first ever fashion show fundraiser, Fashionability. It was awesome and one of the best non-profit fundraisers we’ve attended. It was simple and truly showcased a variety of differently-abled teens on the runway.  Differently-abled included those with and without a disability label. The kids all seemed to love it and Rachel was truly in her element blowing kisses and working the crowd. Great fun for a great cause.

fashionability fun on stage 2015fashionability group pretty girls 2015

We learned the week before that Rachel had been selected as the Freshman girl representative for her high school’s Winter Court festivities. This entailed quite a few things. From being honored at the school pep rally to crowning the Senior King (who also has Down syndrome) at the boys basketball game, Rachel floated through the week.

wpa jordan &N matthew best

It culminated with the WPA (Women Pay All) dance on Sat. night. She invited her friend Ryan, so I guess it was officially her first date. She has been boy crazy since she was a toddler so for Rachel this was the source of great nervousness. Her precious friend Andrea, who we met through CYT and is now her peer mentor at the high school, and her date Justin invited Rachel and Ryan to join them. I have more to say about that but I’ll blog about that another day. It was a magical night for Rachel. We were PTO chaperons so it was fun for us to be able to see her in her element at the dance just being one of the kids. It was fun to watch her dance and interact. It was inspiring to watch the other students interact, too.

ryan rachel wpa better

The Friday night ceremony included the announcement and crowning of the King and Queen. As part of this, parents were invited and introduced with the Winter Royalty Court. The kind and queen were chosen by the students from the three senior female reps and three senior male reps. Matthew Horn, who happens to have Down syndrome too, was elected as the King and a fellow STUCO rep, Lauren, was elected queen. Again it was a happy time to watch how much fun the students all had and how they embraced each other.

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For us, the highlight of that night and maybe the whole process came after the game ended and as the students stood singing their Alma Mater. Rachel was a few steps away from the group but the young man on the end turned and looked at her, motioned and with a big smile stuck out his arm for her to join the line.  Here’s a picture.

alma mater with os boy

The team won that night. We think we all won that night.

 

 

 

 

 

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Happy 50th Baby Brother

This week I’ve listened to a lot of Bon Jovi’s “Never Say Goodbye.” Now, I am a Bon Jovi fan but it’s more about the the memories associated with the song for me. Today, my baby brother would have turned 50 years old. I’ve thought about that a lot the past few weeks. It is life milestone that I didn’t expect to create such a degree of reflection. It’s kind of hard to explain.  You see, Kenny would have been 50 today but he died in a tragic car accident 28 years ago tomorrow. “Never Say Good-Bye” debuted that same year and I heard it a lot on the radio. When I hear it I not only think of my little brother, I play out the memories of his life in my head.

babykenny2

I don’t remember the day he was born. I have been told that my parents played Monopoly to the wee hours of the morning. Then, they woke us and took us to my grandparents and that my grandpa, who wasn’t a man with many words, told us that we had a baby brother. My mom said that I told her I wanted a brother because we had enough “gwurls.”

3kids 3 dogs

I do remember the day he died though. I got the call at 5:17 am from my dad saying my baby brother was dead. I thought I was having a nightmare and stumbled back to bed but before I could get back in bed, the phone rang again. The second ring was the one that shook me into reality. My brother, who had celebrated his 22nd birthday the day before, had died in tragic, senseless car accident in the early hours of the morning on Joy Mountain.  I remember it as well as I remember what happened yesterday. In some ways it seems like an eternity and in other ways, it seems like just yesterday.

When I think of Kenny, I don’t’ think of the grown-up 22 year old man he was. He was engaged to be married. He had a job. Instead I remember the ornery little cotton-headed boy with skin as brown as dirt during the summer. Of course, that might have been dirt and not a tan because he played outside from sun up to sun down. I see his dark brown eyes full of mischief as he and my cousin Jeffrey took off through the woods on one of their adventures. I see him laying in the yard with his dogs. I see Kenny and Jeffrey trying to explain the big hole in Kenny’s face that is gushing blood. They are attempting to convince my grandmother that he ran into a tree. In reality, Jeff had accidentally shot him with the BB gun. They were afraid if they told they wouldn’t let them play together anymore. Though I missed eye witnessing it myself, I can envision my grandmother stripping them naked after they had been in the mud in the creek where she had told them not to go. I can see her getting tickled as she used her switch to get them in action and out of those clothes. One of my most vivid memories is of Kenny running around at my dad’s fast pitch softball games. We grew up on a softball field and always there was an abundance of little boys playing their own version of “ball.” I remember his tiny little self when he started playing baseball at about age four. He was too young but they didn’t have enough players so he got the nod. That was before T-ball and pitching machines.

kenny & cendie grad

I see him as a little boy with his friend Cendie, and I do see him at his high school graduation holding my niece Timi. She doesn’t remember him either. While I have many wonderful memories, the lasting memory is that on February 21 every year when we should celebrate his birth, my parents and my sister visit his grave instead. Since I don’t live in White County anymore, I call them and we reminisce a little. It feels odd that he never knew Jonathan and he never met Rachel. He would have had fun with her. I sit and wonder how different our family or the world might have been had he not been in that car that fateful night. I try to see him as a man who might by now be a grandpa. But I can’t. I can only see that pretty little boy with a switch in his hand backing my sister, my cousin Paula and me in to the corner of the room and laughing as he tortured us. I hear my mom yelling for him to stop and then telling us it is our fault for teaching him how to do that.  And I will continue to hold on to those memories.

“Never say goodbye, never say goodbye
You and me and my old friends

Hoping it would never end
Say goodbye, never say goodbye
Holdin’ on – we got to try
Holdin’ on to never say goodbye”

kenny  dogs

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Auditions: Paralyzed by Fear Updated

I originally wrote this blog a few years ago. I have updated it a bit. The life lesson is still applicable!

Last week Rachel was in her 16th stage production, Rodgers and Hammerstein’s Cinderella.  This was her 8th Christian Youth Theater Kansas City’s production. She loves the stage and the stage loves her. Part of the reason is because she thinks her role as the Villager is as big as the role of Cinderella and sets out to share that joy on the stage. People I have never seen and will never see again tell me how much they love watching her in a show. That is very humbling and such a blessing.

steves best villager

I remember her first audition like it was yesterday. She was 5 ½ years old and in kindergarten.  We lived in the Memphis suburb of Bartlett, Tennessee, and the Bartlett Performing Arts Center  (BPACC) would be hosting auditions for Pinocchio. Missoula Children’s Theatre was the company that would be running the audition and shows.  She was in the correct age range so we decided to try it. I knew nothing about Missoula Children’s Theatre, and only knew that BPACC was a beautiful facility.  People frequently want to know what made us decide to try plays and acting with Rachel. Like any child, you are always trying to decide what is the natural fit for their interests. My former Bible study leader has always described Rachel as a “dame.”  We had noticed but more importantly others had noticed that she seemed to have a comfort on stage. Even when she is in the grouchiest of moods, she gets on the stage and comes to life. People had encouraged us to look for some acting outlets.  It seemed that BPACC and Missoula were about to give us that outlet.

Before we jump into some events and activities, I sometimes call ahead and say, “My daughter has Down syndrome.” Sometimes that helps my controlling nature feel like I’m a little more in control. On this day I had not. That morning, Mr. Fear and Mrs. Doubt started to work on my psyche. “Maybe you should wait, “ came from Mr. Fear.  She can try next time.  What if he other kids laugh?  What if they can’t understand what she says?  What if she has to memorize something on the spot and she can’t?  What if people are mean and rude to her? Then, there was the great fear:  What if she didn’t get a part? Indeed every parent of a child who has auditioned or tried out for anything has experienced the angst of this thought.  At that moment in time, I wasn’t thinking about “normal fears”. Nothing seemed normal and I felt almost paralyzed by my own fears. I had no experience with BPACC or Missoula and our community wasn’t always the “most inclusive” of people with disabilities.  Still, I kept pushing Mr. Fear and Mrs. Doubt away.

We showed up at the theater with the other 130 children hoping to get parts.  My heart was beating so fast that I almost took her home. Instead, I took her little hand and told her to do what she was told to do, to follow directions and just smile. We went in and signed the registration.  No one seemed to be staring. The nicest man came over to us and with a gigantic smile he said, “I’m Ron Jewel and I’m the director of BPACC. We are glad you are here.” He showed us what to do and what to expect and then pointed Rachel to the front rows with the other kids.  She was not the youngest but she was the smallest one there.  She strutted up and found her seat.  I looked at Mr. Jewel and said, “I didn’t call ahead. I hope….” He interrupted me and said, “We are thrilled to have her!”  Rachel and Ron became fast and fabulous friends and for so many reasons I believe he is a gift to the Bartlett Community!

This was Rachel's 2nd play  at BPACC, The Junle Book with Missoula Children's Theatre.

This was Rachel’s 2nd play at BPACC, The Junle Book with Missoula Children’s Theatre.

Missoula has a distinct way of doing their auditions. They went through the audition routine, which took about 90 minutes. After 90 minutes, Rachel was starting to get a bit restless. She was not alone but of course, I thought all eyes were on her.  She certainly wasn’t the only younger one who needed a bathroom break, but I conjured up visions of them turning her away because she needed to go to the bathroom.  At the end of the time, the children were divided into sub-groups. Those who were cast were given a piece of paper. They were told to take it to their parents and when to come back. Rachel had a piece of paper!  Rachel had been cast as a magical baby doll.   We invited everyone we knew and Rachel even had a line. She said, “Mama Mama.”  When we saw her on the day of the show, we understood why she was cast as a magical baby doll. This picture, taken by our friend Elizabeth Duncan, is my all-time favorite of  “Magical Baby Doll” Rachel.

I learned a life lesson that day. I learned that I would never let my own fears paralyze me to the point that they would interfere with allowing Rachel to be who she was created to be. I knew that day that my own fears would never be the reason others would not give Rachel every chance to live her dreams. That January day in the little town of Bartlett, “Mama, Mama” learned a much bigger lesson than Rachel.

small group on stage cinderella

 

 

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ABLE + Theater = PR for Down Syndrome

Rachel has been involved in theater since she was little. Her first true show was Pinocchio under the direction of Missoula Children’s Theater at the Bartlett Performing Arts & Conference Center.

pinocchio

I wrote a blog about that experience that I’ll reprint another day. Currently, Rachel is a Villager in CYT Kansas City’s production of Rodgers and Hammerstein’s Cinderella.

cinderella brag button

This is her 16th show.  Theater is about so many obvious things like discipline, team work and building self-confidence. CYT stands for “Christian Youth Theater” and the mission statement says, “CYT is dedicated to developing character in children and adults through training the arts and by producing wholesome family entertainment, all of which reflect Judeo-Christian values.”  One of our good friends says it is an eternal investment.

In addition to all of these benefits, we have developed some deep and eternal friendships. We love our CYT family. One of the roles Jonathan and I play at CYT is to work in and chair the Green Room where the actors stay when they are not on stage. Wednesday night’s final dress rehearsal produced an unanticipated result for us.

One of our CYT friends has a highly successful financial planning business. He came in Wednesday night and stopped and looked at me and said, “Did you have anything to do with this ABLE 529 thing?” I thought he was joking at first and I joked back and said that I might have heard of it. We laughed and then I briefly told him how I had been involved. He said, “We want to help.” This man and his family are as generous as anyone I have ever known.  They are truly the hands and feet of Jesus in very real ways. He said that several folks who work for him are becoming Special Needs Financial Planners and then he said, “We have enough money. We want to help families. This is the right thing to do.” You can’t buy this kind of positive public awareness.

Our other friend is right. CYT is an eternal investment.

mckenna joy & rachel cinderella

fun times at cinderella

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I’m So Glad I’m Your Mommy, Rachel!

I can tell you exactly what I was doing 16 years ago right now. I was headed to pick up Jonathan. His 34-year-old, healthy, no family history of cancer self had a colorectal tumor removed.  Bring him home. Get him comfy. Go to office. I was the Volunteer Manager for Youth Villages. It was Soup Sunday Weekend. We had over 200 volunteers to manage. Progressed through my checklist and came home exhausted. I was about 18 weeks pregnant with our first child. It had been quite a week, quite a few weeks. We were flooded with phone calls from caring friends and family. Lots of excitement that Jonathan seemed to be on the road to complete recovery.* Then, came the phone call that forever changed our life. I often say the phone call that changed a lot of lives. The phone call from my doctor who said your unborn daughter has Down syndrome.  While “A Glimpse of God’s Grace” tells how our story began, today as I always do on this day I reflect on these 16 years and what is yet to come.

snow bunny baby

I do not apologize for the devastation I felt in those moments, days and weeks after I learned Rachel had Down syndrome. While I had a positive medical experience, 16 years ago we didn’t have many positive role models and support organizations were not as abundant or effective. I hope and think it is better for people today because they have more role models and more supports. Overall, I think social media has been a great help and families do not feel as isolated or alone as they once did.

I think the myriad of thoughts you have in those moments after the news are odd. Some that make total sense and others that now seem laughable. I remember Jonathan thinking “will people stare at us at McDonald’s?” Of course now my response to people who stare is “We know she’s the most beautiful girl you have ever seen.  We think so too.”  This past Sunday people were staring. They were staring at a young lady with Down syndrome enjoying a moment at McDonald’s in a Super Bowl commercial seen by millions.

wicker chair popies favorite

I’ve often told the story that one of my first thoughts was she’ll never be a Razorback cheerleader. Neither was I so why would that even be logical? In my pretend life as a little girl I was though. The almost simultaneous thought was a deep sadness that she would not go to the University of Arkansas. Jonathan and I love the University of Arkansas and it made my heart so sad that she would not have that experience. Today I have the benefit of looking back and thinking “Oh Baby the Places We’ve Been” and “Oh Baby the Places You’ll Go.” I didn’t have that luxury 16 years ago.

Jonathan and I are both avid readers and I remember wondering if she would read? She will read and read and read. In fact Rachel is quite the good little reader.  She’s won a number of awards for her reading. She’s impressed a number of people with her reading. Though comprehension is a challenge, she has high scores on her tests over “Of Mice and Men”, “The Odyssey”, and “Romeo and Juliet” and she can converse about the books with her friends.

Now as we get a little closer to adulthood I have to be honest and say that some of those fears that seemed far, far away seem very, very close now. Sometime today I will pull out her baby book and my journal. I will replay the words of my diagnosis a few times, and I will be reminded of all the beauty her life has brought to so many but mostly to mine. In reading the entries, I will physically feel how her life has been celebrated by so many.

And I will hear her sweet little voice whisper, “Mommy, don’t be afraid. Be strong and courageous. God is with you wherever you go.”

And I will whisper to her, “I’m so glad God let me be your mommy.”

Baby Rachel, the world is a better place because you are part of it.

rachel & mom dora hat

*Jonathan is now 15 years cancer free. He did have to have radiation and chemo but his doctor has declared he is healthier than most 30-year old men. Early detection saves lives and quality of life. Get your screenings people!

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Tired of Being “That” Parent

Indulge me while I vent a little today.

It has been said “you need to know this is a mom who gets what she wants.” For the past week to ten days I have been a basket of conflicting emotions and I have conflicting emotions about that statement. I know it was well-intended. I know and understand special education law fairly well. I know my daughter. I have high expectations for her. I want to have high expectations for those who work with her in various arenas, but sometimes my expectations are way to high for “those” people. I like to think I advocate for what is best and appropriate for Rachel. It’s not about getting what I want.

I have some self-imposed blogging rules and without violating those, I cannot share the underlying source of my conflict today. In the past 10 days, Rachel has brought joy to hundreds of people who see her big smile and joyful heart singing in student choir in “big” church worship. I know this because they seek me out and tell me.

gf beautiful choir

She made 100 on both her biology cell test and her Romeo & Juliet Act II test. Her English teacher told me this about yesterday:

“I’m super proud of her. She blew everyone away when she talked about Romeo’s exile. Yep, she threw down the word exile. I love it!”

She exhibited great courage and skill in testifying before a packed room of Kansas State legislators and disability leaders last week. One piece of press coverage said, “On a day when Congressman Kevin Yoder testified before a Kansas House committee, it was a 15-year-old Olathe South High School freshman who stole the show.” You can see from the picture he didn’t seem to mind. He embraces Rachel’s abilities.

congressman looking on at testimony

She was offered a job as a Legislative Page. Rep. Erin Davis sees her abilities.

She spent hours practicing her dance steps outside of scheduled rehearsals for Christian Youth Theater’s upcoming production of Cinderella.  She is a Villager but you would think she was Cinderella. That’s Rachel.

More than anything she just wants to have friends and be a part of school, extra-curricular activities, church, theater, the community. She just wants to be like everyone else. She just wants to be Just Like You.

I think Jack Bauer said something like “The sad thing is that people like me have to exist.”  The sad thing is that I have to be “that” parent because more people don’t see Rachel and others with disabilities for their abilities. I often say the advocacy work I do is for Rachel and those who can’t, won’t or don’t. It is sad that I have to be “that” parent because of those who don’t or won’t. I’m leaving the can’t out on this one.

com appeal baby rachel 00

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Miss Rachel Testifies

Inquiring minds wanted to know what we would do since the ABLE Act was now law.  Well, we will work to get the state ABLE Act passed! Today we headed to the Kansas State Capitol and testified in support of the Kansas ABLE Savings Plan. It was a real honor to have our Kansas bill introduced by Representative Erin Davis (R-Olathe) last week. group at KS ABLE testimony 0115

Congressman Yoder (R-KS) came to speak on behalf of the bill and reminded the Children and Senior’s Committee that this bill is the right thing to do and will make a difference for ordinary people. Rachel beamed when he mentioned her name. yoder testimony

I testified in my role as a National Down Syndrome Society (NDSS) Ambassador for Kansas and as Rachel’s mom. She was the guest of the day though. She only went rogue a few times. She answered the State Representative’s questions and she was gracious as they applauded her courage and work. One legislator told her she should be a Legislative Page and Rep. Davis already told her she would love to have her. That made mom a little teary eyed in the best sort of way. We still have work to do to get this passed in KS. Like many states our state has budget issues so we must rally the troops, contact our state legislators and get the job finished for all the Rachels in Kansas.

Text of her written and submitted testimony:

rachel proud family testifies ks leg 0115

“My name is Rachel Nicole Mast and I live in Olathe, Kansas. I am 15 years old and I am in the 9th grade at Olathe South High School. I am on Student Council. I made all A’s my first semester. My favorite classes are drama and science. I am rehearsing for Cinderella with Christian Youth Theater. It will be my 16th show. I love to sing and I am in student choir at Blue Valley Baptist Church. I love plays, acting, dancing, going to movies and hanging out with my friends.

I want to work at AMC Theaters. They told me I can when I am 16. I want to go to college at KU or at the University of Arkansas. That’s where my parents went. I want to be a teacher. What I really want is to grow up and get married and live in a pink house. I love Broadway shows so I would really like to live in New York City but I am not sure if my husband will want to do that. My mom and dad say we need to save money for me to be able to do these things.

My mom and I have been working on the ABLE Act for a long time. We go to Washington DC and visit Congressman Yoder, Senator Moran and Senator Roberts. They thought the ABLE Act was a good idea and sponsored it. The President signed it into law. The ABLE Act will help me to be able to go to college, have a job and live in my pink house.

I hope you will think the ABLE Act is a good idea too.

Thank you. Are there any questions?

Rachel Mast

Handing out her personal cards to the Children & Seniors Committee members.

Handing out her personal cards to the Children & Seniors Committee members.

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Remarkable People: Sara Wolff

I know some remarkable people. I have written in the past about my friend Sheila Siegal. She is the first person I always think of when I think of remarkable people. You probably don’t know her name.  She never aspired to be remarkable, but the she gave birth into the Down syndrome community to a remarkable girl named Lori. You can look up Lori’s story but Rachel would say Lori was “super-remarkable!” Lori was taken from us in her mid-twenties.  Born with Down syndrome she lived with pulmonary hypertension until her body gave out. She did more in that 25 years and touched more lives then and in her death than most people could ever hope. She lived life to its fullest. She was my friend, and she was Sheila and Bruce’s daughter. They empowered her to live and in her death they have been the picture of grace, dignity, respect, service, education and they have made Lori live on through their generosity and work in the Down syndrome and organ transplant communities. Sheila and her husband are remarkable.

Since I started blogging I’ve written about some other remarkable people. Today, I want to share about the remarkable Sara Wolff. I probably brought Sheila and Bruce into the mix because Sara Wolff reminds me so much of Lori. Not the way she looks. Not even her mannerisms but her conviction to speak for people with Down syndrome. I knew Lori on a day-to-day basis. I know Sara just from brief encounters in Washington DC and through social media. I treasure the short times I spend with her. She has a kind heart and a kind face. She works. She serves on the NDSS board. She works some at the NDSS office. She lost her mom a few years ago, but her mom had already realized the importance of the ABLE Act for her to be able to achieve her dreams. Like Sheila and Bruce, Sara has not focused on her grief, but on speaking on behalf of individuals with Down syndrome. And oh, what a difference she has made. Her own Senator Bob Casey (D- PA) was one of the co-sponsors and leaders of the ABLE Act in the Senate. She and Senator Casey became friends and she has been invited to town hall meetings and to his press conference to talk about the importance of the ABLE Act. You may have seen Sara’s petition through change.org.  In her testimony before the Senate Finance committee, she made the case why the ABLE Act was the right thing to do from a logical, heartfelt point of view of someone with Down syndrome. She is a role model for my daughter, Rachel. She is a role model for all of those with Down syndrome. She is a role model for those with disabilities. Sara Wolff is a role model for all of us.

Last night, Sara Wolff attended the State of the Union Address as Senator Casey’s guest. You may have heard that this is a bit of a tough ticket to get.

casey wolff

Senator Casey’s office posted pictures of Sara and the Senator doing the press circuit. Senator Casey also pointed out that he would be sitting with Congressman Ander Crenshaw (R-FL) and that they had worked together in bi-partisan fashion for the Sara’s and Rachel’s of the world. It was a pretty big deal as you can tell from Sara’s smile in the pictures.

Sara Wolff & sister Jennifer headed to the 2015 State of the Union Address.

Sara Wolff & sister Jennifer headed to the 2015 State of the Union Address.

Rachel knows Sara so I wanted Rachel to watch part of the State of the Union Address with me last night. I told her about Sara being there and explained what goes on. She wanted to know where Congressman Yoder and Senators Moran and Roberts were. Then she said in her “I can’t believe this” kind of way, “Where is Sara Wolff? Why are they not showing Sara Wolff?” I tried to explain and figured Rachel would say “I was shocked that they didn’t show her.” She had to take a report to social studies today on the SOTU so we printed off a couple of pieces about Sara Wolff being Senator Casey’s guest.

At the end of the night we didn’t see her, but it feels great to me just knowing that the remarkable Sara Wolff was there representing so many of us.  Thank you Sara!

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Realities of an Imaginary Friend

Today I want to recommend a book. I don’t know how I learned about his book. I must have seen it on some reading list. It caught my attention because as a child  I had two imaginary friends. I quickly became engulfed in this book. When I found it, I didn’t realize the story included a child who was labeled as “different.”  Yes, there are parents, many teachers and other adults. There is also an unexpected but needed emphasis on a paraprofessional. I had only a few chapters left so I took it to school pick up. I didn’t expect to sob at the end but I did just that. In the van waiting for Rachel and company, I sobbed.

The book is told from the viewpoint of the imaginary friend. In one spot he is telling why he believes Max his human is brave and this is what he says: “What I like best about Max is that he is brave. It’s not one thing. It’s everything. Max is not like any other person in the whole world. Kids make fun of him because he is different. His mom tries to change him into a different boy and his dad tries to treat him like he is someone else. Even his teachers treat him differently, and not always nicely. Even Mrs. Gosk*. She is perfect but she still treats Max differently. No one treats him like a regular boy, but everyone wants him to be regular instead of himself. With all that, Max still gets out of bed every morning and goes to school and the park and the bus stop and even the kitchen table.”

memoirs

That’s enough to pull you in to “Memoirs of an Imaginary Friend” by Matthew Dicks.  If you are looking for an easy but thought-provoking read that may or may not cause you to reach for the Kleenex, this is a good read. This book will allow you to see the world through some new lenses and through a variety of lenses, too. If you are an educator or a related services professional, you may see yourself or some of your colleagues. If you don’t have a child with a disability in your life, you will get a realistic understanding of what parents of children with disabilities face – daily. I believe parents of persons with disabilities will be impressed with how the writer Matthew Dicks nails some feelings and emotions and brings to life some very real fears. Parents, no doubt you will relate to some of the emotions. Mostly, I think he captures the essence of a child who the world has labeled as different from the very uncomplicated perspective of an imaginary friend.

I think we could all learn a lot from imaginary friends.

 

*Mrs. Gosk is the grade level teacher in the book.

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Will Your Child Come Home from the Movie?

Two years ago today Ethan Saylor went to a movie. He went to see “Zero Dark Thirty.” Ethan didn’t make it home. Ethan died that night at the hands of local off-duty Sheriff’s deputies working as security officers.  Ethan was 26. Ethan had Down syndrome. Unless you are part of the Down syndrome community, you probably missed this story. Unlike some recent events, the national press really didn’t pick up this story. Led by Ethan’s sister, the primary outcry for justice has been the Down syndrome community. You can read a summary of Ethan’s Story here.  In a nutshell, Ethan wanted to see the movie a second time. He didn’t have the money. His support person was trying to diffuse the situation and even warned officials not to touch him as he would become agitated. He was taken to the ground and had a “medical emergency.” He was pronounced dead at the emergency room. The medical examiner ruled this a “homicide”, a grand jury did not indict.

I have had the extreme pleasure of meeting and becoming friends with Ethan’s mom Patti Saylor. Patti never planned to become the face of training police personnel. Patti Saylor has been a picture of courage, strength and dignity through this entire ordeal. She has managed to be kind even when the Sheriff’s brother wrote an editorial stating that perhaps she should have kept him home. He also stated that she had no idea how hard this had been on the off-duty deputies. Think about that statement for about a minute before you move on.

I asked Patti what message she would have me give. She said:The call to action at this time is to never forget what happened to Ethan! Keeping his story alive and in the minds of people local and everywhere. We will be introducing legislation in a few weeks calling for mandatory training for current law enforcement and establishment of the Ethan Saylor Self Advocacy Institute.

In spite of this appalling situation and some of what we see in the media, I believe that most law enforcement officials are good people. They are public servants who are underpaid and overworked. I HAVE to believe that what we are seeing in the media are the exceptions and not the rule. I also believe we have peaceful ways of protesting and hopefully making change but sometimes people don’t believe that and employ unfortunate methods to protest. I applaud Patti Saylor and her family because they have committed themselves to helping establish training for law enforcement officials. Nationwide it is my hope that we will see law enforcement officials, first responders, educators and other such individuals receive appropriate training. It will not solve all problems but it will help. I threw in educators because we in the disability community know that we are still working to rid our schools of outdated seclusion and restraint tactics that create abuse, humiliation and even the death of students in the public school.

So today I join many, many other people in praying for Patti and the Saylor family. Let us not forget Ethan. May we in this United States of America show the Saylor family and millions with disabilities that we do respect individuals with disabilities and implement appropriate training and instruction so there will never be another Ethan.

My Rachel loves to go to movies. She wants to go to movies with her friends – “without any parents.” As we discuss this option, I have to tell you I often think of Ethan. It is extremely difficult for me to imagine this happening to Rachel in our community. But Patti Saylor never imagined that her son would not come home from the movies either. #JusticeForEthan

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