Perspective on Inclusion from a Worship Minister

Yesterday, I posted a blog “The Hardest Place for us to Take Our Special Needs Child? Our Church.”  This was my Facebook introduction of the link: “While our family has overall had very positive church experiences, we have had some moments. I get a lot of feedback from my own blog about the lack of inclusion in The Church for individuals with intellectual disabilities. This blog speaks to a different perspective. I am posting in hopes that those who need to see it will. Thanks to the author for sharing her heart that represents so many.”

beautiful baptism smile2 - Copy

I knew it would cultivate quite a bit of discussion because it always does. I’ve had some interesting conversations through the years and in the past few months with

  • People who want churches to be more inclusive
  • People who want more segregated special needs programs
  • Church members and staffers who want to create a more welcoming environment and
  • Church members and staffers who are trying to figure out why parents of individuals with special needs often feel excluded.

It has solidified my thinking that we have to educate people. This summer a gentleman was genuinely horrified when I told him of a family who had been told by a Christian church that their son with autism couldn’t come to Sunday school, and they would not provide childcare during worship. Non one at this church had ever met the child or the family. They offered the parents the option of sitting in the media room with him and watch worship. This may not be the norm but I’m not sure it is the exception either. Likewise, I spoke with someone who told a horrible story about a family sending their child with Aspberger’s to camp and not really preparing the staff for how to manage it. That, too, should be the exception.

In a Facebook discussion thread, I also clarified my introduction with this comment: “When I mention The Church – I’m not referring to one specific church. I’m talking about The Church as in the one Paul and Jesus are referring to in the New Testament. There are certainly many, many churches doing a great job with individuals with disabilities but from the feedback I get from readers around the country, it seems it may be the exception. Awhile back our own worship minister wrote a great blog about his work with Rachel. I’ll post it tomorrow!”

So here you go. I think all of us have a lot to learn from Pastor John’s blog. Special thanks to him for sharing this on his blog a few years back.

Just Like You

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By John Hollan, Pastor of Worship, Blue Valley Baptist Church
“At the age of 16, before I even had a clear understanding of faith and following Jesus, I was offered my first paying church job. I was the Interim Music Director for a small Baptist church on the Texas Gulf Coast. There hasn’t been a time in the 29 years since then when I have not been actively involved in church music ministry. I’ve planned and led countless worship services, served as church accompanist, directed choirs, led mission trips and choir tours, and been involved in any number of other things you can imagine, all as a part of my calling to ministry.
However, even with 29 years of ministry under my proverbial belt, I realized just last year that there was one thing I’d never done in the church: I’d never taught in a setting that included people with Down syndrome. I had acquaintances who live every day with Down syndrome in their families. My wife had taught students with special needs. But I had never been in that position.\
A particular family of friends who are involved in our church have a daughter who has Trisomy 21 (the formal name for Down syndrome), and their daughter has been involved in our circle for several years, both through theatre and through our age-graded music program at BVBC. Rachel is a delight, but until last year I only knew her casually… When she started middle school it meant that she would now be eligible to join our student choir, and I knew for certain that Rachel would participate. I’ve known and loved Rachel for a while now, but in almost three decades of working in the church, she would be the first child I ever taught who had Down syndrome. Fortunately, her parents are articulate and informed and they have been my best teachers as I embarked on a journey of learning how to include Rachel in our ministry… After all, our student choir functions differently than the children’s choir where she had been so engaged. At the onset of the year I spoke with her mom and explained my inexperience in teaching children who are differently abled. Her solution to my problem was simple: Ask questions.
And so, I started learning… I did a small bit of reading and web surfing, but mostly I just did what seemed right in including Rachel in the workings of our choir. I knew her parents have very high expectations for her in regards to effort and attitude, and I found that all I had to do was teach accordingly. It was a great year for BOTH of us, I believe, and now I find myself feeling a stronger responsibility not only to include her in the workings of our ministry, but also to find ways to help her follow Jesus more effectively. That is, after all, a pastoral responsibility.
It was a startling thought to me when I realized that churches on the whole aren’t always prepared to disciple those who have cognitive and physical challenges. My calling as one of the pastors at BVBC is to shepherd the people in my charge, and God has given me all kinds of wonderful people to lead… a couple of them happen to have Down syndrome. Granted, I’m FAR from being proficient in maneuvering their special educational needs, but I am learning ways to treat them as they want to be treated… just like I treat the other kids in my choir.
Recently Rachel had the opportunity to be included in a short 13-minute film called “Just Like You” that features three sets of real-life friends; in each pair one friend is a “typical” teen and the other has Down syndrome. The film GENUINELY warmed my heart and gave me hope for our future. I would encourage you to take a few minutes and watch it. It’s TOTALLY worth your time. Further, I would encourage you to step into opportunities you encounter that might involve people with Down syndrome. It’s not hard… just don’t shy away.
When we know better, we do better.”

Centrifuge Summer Camp Lunch Bunch

Centrifuge Summer Camp Lunch Bunch

 

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Every Love Story is Beautiful But Ours is My Favorite!

Today will be an unremarkable day for most people. For me it is a very remarkable day because on this day 25 years ago I married my best friend and love of my life. Really, it doesn’t seem like 25 years. I am more the realist than the romanticist but I still enjoy a great love story, especially the real life ones. The real life ones like I saw on the news the other day when folks had been married 78 years. The real life one in Hollywood like James Garner who was married to the “love of his life” Lois Clarke for 58 years.

My favorite love story is ours though. I know it is corny. I don’t care. Our wedding day was a sunny, hot day in Fayetteville, Arkansas. We were at our beloved University Baptist Church where we met.

wedding outdoor

We were surrounded by loving family and friends. We were embarking on the great adventure as Jonathan would say. A great adventure it has been. Fairy tales begin with once upon a time and end with and they lived happily ever after.  People seem to forget that even in fairy tales a lot happens between the pages. Some of it is heroic and romantic but some of it is gunk! Marriage is a covenant, and for us the miracle is that God took two imperfect people and we are living out our own fairy tale with the heroics, romance and gunk!

Wedding gift from Neal. We still have this tray and the cups!

Wedding gift from Neal. We still have the set!

We have had a great life. I think Jonathan would agree that we have been blessed beyond what we deserve. I have married someone who is kind and sweet and fun and funny. He listens. He is a good dad. He sets a good example. We don’t have many arguments, but he usually lets me win. (Secret: That’s because I am usually right. Ha!) Jonathan is not perfect but he is the perfect man for me and the best daddy a little girl could ever have hoped for. He wants to go to Rachel’s activities including those dance recitals. He wants to go to open houses and he wants to be here for IEP meetings.

Jonathan loves my family and he has been a tremendous son-in-law, brother-in-law and uncle to them. He has brought a lot of laughter to our family. My family loves Jonathan and has been a great source of love and support for him.

This is Jonathan's favorite picture from our wedding. The dress was loaned to me by my cousin.

This is Jonathan’s favorite picture from our wedding. The dress was loaned to me by my cousin.

We have had a lot of things happen in our 25 years, some good and some of that gunk. We often say you can’t make up the stuff that happens to us and it is so true. We have done some traveling. We have gone to lots of sporting events. We are both giddy that college football season starts this weekend. We have many friends. Some of those friends we both married. Others we’ve added along the path. Jonathan has had two ACL re-constructs – both compliments of church softball. We learned our unborn daughter would be born with Down syndrome the day after he had a colorectal tumor removed. Our church and our friends rallied around us and to this day many of those same people support us even if it is by distance. Love and support come in different packages and sometimes it’s a kind compliment on Facebook and other times with a donation to one of our Down syndrome causes. We’ve lost grandparents, a parent, other relatives and close friends.

Jonathan has tolerated all my causes that I get involved in. He has judged a lot of 4-H speaking contests. He has set up a lot of tables for Buddy Walks, painted the Down Syndrome Wheel of Facts, loaded countless cases of water and soft drinks on trucks, taken out lots of trash, allowed our house to be turned into the Down Syndrome Association of the Mid-South, fed baby chickens that needed to stay overnight for a poultry project, and much more. Some of this he has done for Rachel but some of this was pre-Rachel and he did it because he loves me. Jonathan knows what is important to me and it makes it important to him because he loves me. That’s part of that give and take of a marriage.

Through 25 years and nine moves, we’ve attended a number of churches where we have always gotten involved. When the going has been rough like cancer and Down syndrome, they were the hands and feet of Jesus for us. We were in graduate school at the University of Arkansas when we met at University Baptist Church. We were a part of fun group that loved Jesus. We had great mentors. Through the course of our 25 years the core has been our church and our love for Jesus. One of our great loves is that through my 4-H Extension agent work and our churches we’ve been a part of many, many young people’s journeys. Watching them grow into capable, contributing adults and parents has been a great joy.

Back when we first started our courtship, a sweet friend said to me, “I believe you and Jonathan have true love. I don’t know if it is forever, but for this moment in time in it true love.”  I would say true love is forever and ours has been.

I don’t know what the rest of our love story will look like, but I am looking forward to doing these next chapters with the love of my life. Happy anniversary, Jonathan. I love you.

Saddle up your horses
We’ve got a trail to blaze
Through the wild blue yonder
Of God’s amazing grace

Let’s follow our Leader
Into the glorious unknown
This is a life like no other
This is the great adventure

Come on, this is the great adventure
Saddle up, saddle up your horses
We’ve got a trail to blaze
Through God’s amazing grace

From “The Great Adventure” by the great Steven Curtis Chapman

candleight

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Inclusion in Action: Welcome to High School

High school started a week ago today. Over the course of the past week, I have been able to see the tangible benefits of inclusion in action during Rachel’s first week of high school. Don’t know what images you have when you think of your child with Down syndrome or another disability in high school but reality has been different from my vision – in a good way.

At the Freshman ice cream social hosted a couple of days before school’s start, Rachel saw many of her freshman friends.  Most had that “deer in the headlights look.” Rachel found some older girls she had met at acting class. She met the student council president and they connected. She met other student council members  This little group chatted with her for a long time and offered to help her. She was in heaven and declared that she thought student council was for her! I would agree with that.

Ice cream social with South Girls.

Ice cream social with South Girls.

The first day of school is a half day with Freshman only. They have what they call Falcon Mentors. Rachel’s Falcon Mentor is our precious friend Andrea Strickler.

Fabulous Peer Mentor!

Fabulous Peer Mentor!

Andrea is a junior and an amazingly gifted singer and actress. We know her through CYT. Andrea has a sister with Down syndrome who graduated high school last year. We requested Andrea as Rachel’s peer mentor and she requested Rachel. I cannot say enough about this wonderful young lady.  She met Rachel at the door and guided her through the day. Rachel needed a good, confident start and Andrea helped make that happen.

9th 1 day rapping 9th 1 day lunch

So this is how I was greeted at pick up. Me: “How was your day?” Rachel who was carrying two t-shirts responded,  “Amazing. It was an amazing day mommy. I won the dance-off!” One shirt for all the freshman and another for winning the dance-off. What can I say? The girl loves to dance.

Later that day, Andrea sent me a video of the dance-off, but I couldn’t get it to load to my blog. She also posted this to Facebook:

astrickler fb entry day 1 9th

The Student Council president, Ashley, sent me a lengthy text. She wanted to be sure I knew what a great day Rachel had and Rachel had WON the dance-off. She sent me seven pictures. Here are a couple.

dance off 2 dance off 1

Thursday was a really big day too. It was the first day with all 2,117 students. The school floor plan is a bit confusing, too. Ms. Andrea met Rachel to escort her in. I know that once Rachel learns her way around she will be fine. There were still many i’s to dot so I prayed Joshua 1:9 a lot.  I was very concerned about lunch. I had found no one with the same lunch as Rachel. If we are going to have an issue, it is during these unstructured times.  So here she goes to lunch with several hundred people in a new setting with new lines. Also, I didn’t want her sitting alone or with staff.  Again, she’ll be fine once she gets the system but I really didn’t have information on how it was going to work. Then, I get a text from one Alli Handy. Alli goes to church with us. She’s a senior. She and Rachel have become friends at church and I’ve been teasing her that she is responsible for Rachel this year. This is the picture and this is the message:

“Look who I found at lunch today?”

alli & rachel lunch 1st day

Seems Alli has the same lunch and they eat together every day. Literally, this mom’s prayers answered.

A few days later Rachel told me, “Alli Handy has lunch with me everyday and she’s senior.” Envision her big eyes and ginormous smile as she shares this. I shared with Alli and she said they were having a great time and now her group of friends knew Rachel and they were watching out for her too! I few weeks back I blogged about the importance of adult mentors. I would say the value of positive peer mentors cannot be overstated.

Rachel now has new followers on twitter – students she has met at her school.  I ran into a friend of mine who has a senior son. He didn’t know Rachel but he told his mom about Rachel winning the dance-off and what a great job she did. Another message for this mom.

I would say this is inclusion in action Because Rachel has always participated in typical activities, she knows people outside the labels of CBR, resource, DS, and the rest of “disability alphabet soup.” She’s hanging out with other students who fortunately have stepped it up and taken care of her in these first days. I do not believe this would have happened had Rachel not been included at school and community activities for all her life. Look at the trail of people? CYT, school, church, theatre and there are some dance friends in there too!  That’s inclusion in action.  Now, if we can only get adults to learn to put aside labels and low expectations?

Back of Class of 2018 shirt. Remember, this is Rachel's Great Adventure!

Back of Class of 2018 shirt.

This is Rachel’s Great Adventure!

Disclaimer: Since I try to be honest with my readers, I must tell you that there have been many behind the scenes happenings that could derail Rachel’s train. We have shielded her from all of that. I think it is important to model respect for Rachel.  We will let Rachel be Rachel, and we will deal with the adult issues and the train wrecks.

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High School: Be Strong and Courageous Rachel

A dear friend gave Rachel a wall hanging for her birthday. It quotes Joshua 1:9.

joshua 1-9

I know that verse but hadn’t thought of it much until the gift. As I kept seeing it, I realized that God intended the gift more as a reminder for me. I realized that this is our verse to claim as our guiding principle for these next four years. I even wrote it on Rachel’s dry erase board on her door. So today as she starts this endeavor called high school, I have a little letter to her. I’m inviting you to read it.

Dear Rachel,

I imagine that 15 years ago today we were at Special Kids and Families with the other Ben’s Angels. We were all learning together then and we’ve been learning ever since. Your friends Ben, Leigh and Brooke still live in Tennessee and they started high school last week. I want you to grow up. I want you to achieve your dreams even if that is a pink house in New York City. I just didn’t know that 15 years would pass so fast.

1st day of kinder

So today as you go out the door, I am going to remind you of the words of Joshua that I’ve been quoting a lot lately. “Be strong and courageous. Do not be afraid or discouraged for The Lord your God is with you wherever you go.” I know you are excited about high school, but like everyone else you are a little nervous too. You are one of the most courageous people I have ever known. When your brain is full, you go on. When you have a hard time understanding what the teachers or friends are talking about, you continue to listen and take notes. You look up directions on your iPad and show your daddy and me. Unlike me, you even read the directions on games and apps. This summer you have told me that having Down syndrome is hard. You tell me that if you didn’t have Down syndrome, people could understand what you say better. Still, you keep on going.

The book of lists says that the number one fear of American adults is public speaking. Yet, you get up in front of people and dance, sing and speak. You have introduced Senators and Congressman. You led the pledge for the Governor this summer.  They didn’t want you to be overwhelmed but no worries. You could have run the show. You have spoken to hundreds of people about Down syndrome. Your stint in Just Like You Down Syndrome has made you kind of famous.  Even people waiting in line for the lady’s room recognize you! I know you will do your very best in high school, and you will have an awesome experience.

Now, I’m going to tell you a secret. I’m more than a little nervous today. I’m scared. I’m really having to cling to that verse. I’m not scared about you though. I know you will be strong and courageous and do your very best. I’m scared that others won’t do their part. There you have it, Rachel. I have done my very best to be sure that everything is in place for you to have a good transition to high school, but I am not confident that everyone else will do their part. I have insisted that you be kept in general education classes in spite of being reminded that almost no one else with Down syndrome has done this. I have provided videos and books. We have had meetings – lots of meetings. We have tried to put it all in place. I like to control everything in my environment and God likes to remind me that isn’t going to happen.

You have a good and kind heart. You are a romanticist and you are fiercely loyal to your friends. You have a strong moral compass and think everyone else should and does. Because you have a kind heart and loyal nature, you believe all people to be kind and loyal, too. I am scared that some of those other 2,149 students at your school will use those great character traits to tease you or hurt you. Statistics say that about 70% of young ladies with intellectual disabilities are sexually abused in some way. I want you to be the 30%.

When you were six years old, you auditioned for your first play, Pinocchio. You were cast and were the most precious Magical Baby Doll ever.

pinocchio

That day God taught me to never let my fears stop you from doing what you need to do or what He needs you to do. I didn’t turn around and go home. The rest is history as your great love is, hands down, the stage. And you do light up a stage. And you will light up Olathe South!

So now you go on and tackle a new group of people destined to become Friends of Rachel. Show them the possibilities by showing them your abilities. Show them that it is not because the law says so but because it is so you belong with everyone else.  And always remember that no matter what, I love you. I am here for you. I will always be your greatest fan and cheerleader. This is the Great Adventure!

 

 

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Blueberry Cream Cheese Breakfast

Saturday morning I awoke and thought “what to have for breakfast?” I had some blueberries to do something with and crescent rolls. I have some recipes using those but I wanted something new so I went to the internet.  I found Blueberry Cream Cheese Pies in various versions. I chose the Kraft version.  I had all I needed to make those! A fridge staple at my house is crescent rolls. They are versatile and can be used for so many things. With blueberries in them, they must be healthy – right?  Jonathan was gone on one of his “runs.” A mere 10 miles that morning. Hoping Rachel would sleep late so I had time for my cream cheese to soften. This is the finished product.

blueberry cream cheese pies 2

Received Jonathan & Rachel’s Seal of Approval. Very easy and I suspect you could substitute other berries if you wanted. Enjoy!

Blueberry Cream Cheese Pies
1 pkg.  (8 oz.) refrigerated crescent dinner rolls
4-oz. (1/2 of 8-oz. pkg.)  Neufchatel Cheese, softened
3 Tbsp.  sugar
1/2 cup  blueberries, divided

 

Preheat oven to 375ºF. Unroll dough into four rectangles. Press perforations together to seal. May need to wet your fingers. Combine Neufchatel and 2 tablespoons sugar.

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Spread onto dough rectangles to within 1/2 inch of edges. Mix together blueberries and 1 tablespoon sugar. Top evenly with blueberries. Bring opposite corners of rectangles together; press together to seal. Place on greased baking sheet.

Bake 11 to 13 min. or until golden brown.

They come out very warm so cut into them with caution. I used reduced fat Pillsbury crescents. They work fine but do not pinch together as well as regular ones.

In fact they are so yummy, Rachel is having one as a leftover for breakfast now, and she is eating it off of her Veggie Tales plate! I believe Madame Blueberry would approve.

blueberry cream cheese rachel

 

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Three Stories of Learning and Inclusion

Yesterday I spent about 30 minutes with one of Rachel’s high school teachers. She had met with Rachel’s former teacher of the same subject matter and wanted to know if we could meet. I love teachers who reach out like this. She told me that she had never taught a student with Down syndrome. No worries. I told her that happens to us a lot. Stunning when you think about the fact that IDEA was passed in 1975. That discussion is for another day. She also told me she was nervous. “I want to be the best teacher I can be for Rachel. I want her to learn.” I have heard this before and again, I love it when teachers will sit down with me like this. I assured her we would learn together and we discussed some strategies. I also told her a couple of stories that support some of our commitment to inclusive education.  She said these stories really helped her. I think I’ve shared them before, but as school is rolling out it won’t hurt to share again.

When Rachel was in 7th grade they read a book in class called, “My Louisiana Sky.” As I was dropping girls home after school, they were talking about the characters and who they liked and why. Rachel was part of the discussion. It was a good conversation. If she isn’t in the classes with her friends reading the same books they are, she is cut from the socialization part of the pie too. The teacher for this class told me they had language circles and she was observing Rachel’s group. There was some question about this book that they were discussing and the group had the wrong answer. Rachel knew the right answer and finally got them to listen to her. The teacher said, “Yes. Go Rachel!”

SAMSUNG CSC

Last year in social studies they did a wagon train project. They had wagon train groups. One of the boys in Rachel’s group was one of the high-achieving, gifted kids. He has always been kind to Rachel. His mom caught me at school and told me that her son loved having Rachel in his wagon train group. I commented that that was so sweet and thanks for sharing. “I want you to know why though. He says that Rachel always comes prepared, always has her homework done, asks good questions and she is funny.”  That melted my heart! You see, I suspect this young man will be able to hire someone with a disability some day. His time with Rachel will remind him of the abilities of people with Down syndrome. He will not be fearful. He will embrace it.

Finally, a little example of how and what Rachel learns. Last year they read Uncle Tom’s Cabin. Rachel didn’t like the book. I noticed that she made like a D on her quiz so I contacted the teacher. I was not upset but I was trying to figure out what was going on. She said that she really seemed to struggle with it. The teacher had been great with doing her modifications and accommodations and we agreed to let Rachel re-take parts of the quiz. I was discussing this with Rachel and she reiterated her dislike for the book. I often tell her I don’t like unloading the dishwasher but I still have to do it. Finally she said, “You know Uncle Tom’s Cabin is like Hairspray, mommy.” I looked puzzled and wanted her to tell me more. Rachel loves the movie and musical versions of Hairspray and she told me this, “They don’t like black people in Hairspray and they don’t like them in Uncle Tom’s Cabin. I don’t like that. It makes me sad.” I was impressed and confident that she understood what she needed to understand.

george&rachel best 05

From George in kindergarten to her middle school friends and classes, the power of inclusion is that it does just as much for those who don’t wear the label of disabled as it does for a girl named Rachel.

 

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The Blessings of Rose Bud & a Birthday Cake

We just spent a few days in my hometown of Rose Bud, Arkansas. Technically, I’m from the suburb of Joy. I usually say that we didn’t have a post office or a school at Joy so I just say I’m from Rose Bud. Days at home are cathartic for me. Joy, Arkansas is in White County. Agriculture is still king there. The smells of home, running into a classmate at The Rambler (restaurant in Rose Bud), a trip to the most beautiful Greers Ferry Lake all add to the nostalgia and familiarity to me. Mom’s house literally overflows with cucumbers and tomatoes, and she complains about what to do with all of them. That’s familiar too. Daddy reports that they’ve had so much rain that he has to mow every day. Mowing at his house is a considerable job.

rachels rbacks danceathon the girls14

We are there to celebrate my mom’s 74th birthday. We try to go every year around this time. We drive to Little Rock and visit some good friends. We spend a day on the lake with some of Jonathan’s college friends – friends I’ve married.

lake with jack 14

We go to the little church where I grew up, Mt. Hebron Baptist. It’s not the same building but it is many of the same people. Many have gone on to be with Jesus now but I see and say hello to much of my extended family. This trip I saw my cousin Debbie. We graduated together and had a nice visit in the church aisle. Some of my wonderful 4-H friends, the House’s, journey up to Rose Bud and spend a few hours. Lots of memories there. Makes me miss them a lot. My niece spends a day with us playing games with Rachel and watching Disney movies. She is 32 but loves games and Disney. She and Rachel are definitely cousins. They played the Game of Life. My niece posted on Facebook, “Rachel was an Entertainer with a $70,000 salary, she lived in a beach house with her husband and 3 daughters. She invented a new sport, discovered a new planet, but her most impressive accomplishment was becoming President!”  I’m sure the house was pink but under current laws she can’t earn that $70,000 so it’s a good thing she became President. Maybe she’ll get the ABLE Act passed!

game of life rach timi

We cook mom a birthday dinner of pasta dishes. She loves pasta. My mom loves to eat everything actually. All four feet 11 inches of her loves to eat. She’s like the Energizer Bunny times 100. We act silly and wear birthday hats.

moms birthday & hats july 14

We sing happy birthday and eat a delicious cake made by me (recipe below.) I recommend not thinking about calories or fat when you eat this because it is so good. It’s worth the calories for one day to celebrate the life of someone remarkable! We know we are blessed. I reflect a bit more and decide that I am going to embrace these moments because life is short. I am thankful for the gifts of my rural roots, my family, friends and life.

I am blessed.

Chocolate Mousse Ice Cream Dessert (Original Recipe found in Pillsbury’s Classic Cookbook Chocolate and Other Cravings )

Crust

2 cups vanilla wafer crumbs (about 60 crackers)

1/3 cup margarine/butter melted

Filling

1 8-oz package cream cheese (I used Neufchâtel.)

2 cups powdered sugar

3 oz. unsweetened chocolate, melted

3 eggs

1/2 gallon ice cream (original recipe calls for Mint Chocolate Chip or Peppermint. I usually use mint chocolate chip but my mom doesn’t really like that so I substituted a vanilla fudge swirl with miniature peanut butter cups in it. It was rich but yummy!)

Heat oven to 350 degrees.  In a small bowl, combine crust ingredients and mix well. Pres crumbs into the bottom of a 13 x 9-inch pan.  I spray my pan with non stick spray. Bake for 10 minutes or until light brown.

Meanwhile, beat cream cheese in a small bowl. Add powdered sugar and beat until smooth. Add chocolate and beat well. Add eggs 1 at a time, beating well after each addition. Pour over baked crust. Bake for 12 – 15 minutes or until center filling is set. Cool completely.

Spread softened ice cream over chocolate filling Cover and freeze for 4 hours or until firm. I froze overnight.  Let stand at room temperature for 10 minutes and cut into dessert squares. Drizzle with warm satin fudge sauce (recipe below.) Supposed to be 15 – 18 servings.

chocolate mousse dessert

Satin Fudge Sauce

4 oz. semi-sweet chocolate, chopped

1/3 cup butter or margarine

1 1/2 cups powdered sugar

1 5-oz can evaporated milk.

1 teaspoon vanilla

In a heavy medium-sized saucepan, combine all ingredients except vanilla.  Bring mixture to a boil over medium heat, stirring constantly. Reduce heat to low; cook 5 minutes, stirring constantly.  Remove from heat and stir in vanilla. Serve over ice cream or desserts. Refrigerate leftovers.

 

 

 

 

 

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Veggie Tales Encourages US to #PasstheABLEAct

Crazy huh? I know it does sound a little crazy but don’t be too fast to dismiss this idea. Consider this: the ABLE* Act (H.R. 647, S.313) (Achieving a Better Life Experience) has 370 House Cosponsors and 74 Senate Cosponsors and it still waits to go the floor for a vote.  Doesn’t sound quite so crazy does it?

Veggie Tales Cake by Mommy Mast

Veggie Tales Cake by Mommy Mast

Rachel has always loved Veggie Tales as evidenced in these birthday party pictures. One of her first words was “Bob” as in Bob the Tomato. True story.

Loves her Veggie Tales cake

Loves her Veggie Tales cake

One of Rachel’s favorites was “Queen Esther.” In fact, for years she read the book of Esther every week when we traveled to church. One of my favorite parts of the story is based on the words found in Esther 4:14 “For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father’s family will perish. And who knows but that you have come to your royal position for such a time as this?”  Esther didn’t really want to be the girl who became Queen. The Jewish people and her own family were depending on it though. She wrestled with this but in the video her cousin Mordacai tells her that she was created for such a time as this. I say Congress was created for such a time as this. 

Hmm Veggie Tales sandals. Who knew?

Hmm Veggie Tales sandals. Who knew?

Last week the ABLE Act  went to the Senate Finance Sub-Committee. This was a giant step in a journey that began in 2006.  ABLE’s next stop is House Ways and Means Committee for markup tomorrow. When I saw the announcement, I cried. Many people have worked tirelessly to try to get it passed. Every time we don’t get it passed, we start over in the next Congress. Right now it seems like we are headed to the finish line. It is time. This bill needs to quit sitting on Capitol Hill!  It is a common sense bill that simply stated allows individuals with disabilities and their families to save for the future without fearing the loss of benefits. It is a bill about dignity and respect. As I told Congressman Kevin Yoder (R-KS) the first time I met him, “You should cosponsor because it is the right thing to do.” Last week found Self-Advocate and NDSS Board Member Sara Wolff giving testimony about why it needs to be passed. There were other powerful testimonies and not just from the Down syndrome community. My new catch phrase to add to the #passtheABLEAct is “the time is now.”

Just too cute!

Just too cute!#passtheABLEact for this one!

So back to Veggie Tales, Queen Esther and the ABLE Act. Congress, you were made for such a time as this. Do the right thing. Get this bill off of Capitol Hill and send the ABLE Act to the President now. It is past time to #PasstheABLEAct.  It’s the right thing to do! You all have been called together for such a time as this.

Early start to advocacy with this flag dress gift from Ben.

Early start to advocacy with this flag dress gift from Ben.

*About the ABLE Act:

The ABLE Act would create tax-free savings accounts for individuals with disabilities to use for qualified expenses such as education, housing, medical, and transportation. The legislation has earned the support of more than half of the United States Congress (370 House co-sponsors and 74 Senate co-sponsors) and more than 100 local, state, and national disability advocacy organizations.

The legislation, first introduced in 2006, would amend Section 529 of the Internal Revenue Service Code to 1986 to create tax-free savings accounts for individuals with disabilities. The bill would supplement, but not supplant, benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources.

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War Buddies – Comforts and Connections

Six years ago about now I curled up in the fetal position on the floor of an office in Memphis, TN. I sobbed. My heart ached. Even now as I write this I tear up thinking about it. It was reminiscent of the moments after I received the prenatal diagnosis that Rachel had Down syndrome. It  was an older office and not even in the high dollar part of town. It was crowded with hand-me down furniture. It was crowded with memories. Even though the Down Syndrome Association of Memphis and the Mid-South had only had this donated space for a few years, it represented the past nine years of our lives. I knew leaving that space as the first paid staff member, the first Executive Director of the organization would be gut wrenching so I planned my departure accordingly. I wanted to be alone with my pain.

This week the Summer Disability Blog Hop lands on Comforts and Connections.  You may be thinking that paragraph is not very comforting, but it represents my comfort and where I feel connected. It represents my war buddies. The term war buddies was coined by my precious friend Leanna. Leanna and Shawn were our very best friends when we lived in Arizona. Neither of us had kids then. We taught youth Sunday school together and had a ton of fun. The occasion of my departure from Memphis wasn’t a bad thing. My husband had landed a great job in the Kansas City area. By all accounts the area had a great quality of life, great schools and opportunities. This has all proven to be true. It has been a good move for our family. It wasn’t about that. Still, in 19 years of marriage and five re-locations, why was this move so hard for me?  My friend Leanna said, “You are leaving your war buddies. You cannot recreate what you have been through with this group of people. No one else will understand in quite the same way.  You have lots of friends. You will make new friends but these are your war buddies.” I realized she was right.

Children give you a different kind of connection to people.  Having a child with a disability births you into another club. I met my friend Becky at Special Kids and Families. I can still remember it. Rachel was about a week and Ben was not yet three weeks old. We were there to start this thing called early intervention. Becky was rocking Ben. I was struck by how pretty she was and she seemed like a nice person. I had been praying for God to send me a new friend – someone who was walking this journey. I didn’t want to be too picky but someone with baby with Down syndrome who was a Jesus follower would be nice. I went home and called to inquire about her. Ruth, the intake coordinator, told me Becky had already inquired about me. We lived within 10 minutes of each other.  A lifelong, eternal friendship was born. We served on the board of Special Kids together, worked to try to make systems change to education, and carpooled Ben and Rachel to all kinds of things. We even wore camouflage and ate wild game to raise money to support our program. We still talk weekly and often several times in a week. We are connected and we bring each other comfort.

ben&rachel01

Shift gears to the Buddy Walk. Our organization was the true description of a mom and pop non-profit. Lots of good people trying to build an organization and the tool used to get there was the Buddy Walk. By serving alongside amazing people and then assuming leadership for the walk and working with more amazing people, we built a sisterhood. I say sisterhood because it was mostly women. We had many great husbands who made it possible too but we were the ones in the trenches. In the beginning there was very little money and no space for our organization. By the time we found our donated space we were operating the organization and the Buddy Walk out of two houses across the county from each other. We sorted over 3,000 shirts in a home. We did have a small storage room in the back office of a check cashing business.  It wasn’t big enough for the stockpile of goods we had so my garage became Buddy Walk central. We would meet in parking lots to trade-off the goods that had been collected and needed swapped for an event. We worked hard, cried some and laughed a lot. We built something together and when you work together for something you believe in you build a connection.

rach on daddy shoulder bwmem dancing with mom

Then, we had enough money to do better programs and have nice materials and even have a strategic plan. Someone had donated office space and that started out simply as a spot to operate our Buddy Walk. Eventually, we hired some staff. It could truly be called the incredible journey. It was truly a labor of love. Building the Buddy Walk together created connections but we also had an organization to build to try to meet the needs of families in a three state area. Like most groups we were doing this simultaneously.

It was hard and everything wasn’t always smooth but we manged to build something good and strong for families. We managed to build a well-respected organization. Along this journey, I had the honor of being a part of people’s lives at the best and worst of times. In one year, we lost four babies to heart problems. Nothing in life prepared me for standing with those families but I did it because that’s what I was called to do. Nothing prepared me for Lori Siegal or speaking at her funeral when she died of a heart problem at the age of 25.

lori siegal bw 2005What an honor to be the first person to get to say congratulations to the family of a newborn newly diagnosed with Down syndrome who is afraid because they don’t know what the future holds. What an honor to have the opportunity to give someone factual, up-to-date, unbiased information as they wait for the results of their amnio. What an honor to speak on behalf of people with Down syndrome to doctors, nurses and future teachers. So, so many connections were made. And in working side by side for something so much bigger than any of us individually, we felt comfort or at least I did.

I wrote a blog awhile back that says what I would say 14 years later. One of the things I would say to anyone is to find a support system with real live people.  Facebook and social media outlets are nice but try to find some real people who have walked or are walking in your shoes.  We are all different and not everyone wants to build a walk or an organization. In building a walk and an organization, I found comforts and connections. There is nothing that feels quite like it. We are all creatures created differently with different needs, wants and motivators.

While I have found many new friends who I love and I love to be able to see precious faces on Facebook, connect with families and meet them at conventions,  I do still miss my war buddies. I think of them often and fondly. And you know who you are.

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One Important Tip for School Success – Mentors

Today is high school registration. I believe Rachel has a normal range of emotions about high school. She is excited but she has acknowledged she has some anxiousness about certain things. I think that is typical. I am excited for her and have my own anxiousness. More about some of that later.

I was up at school last week because Rachel’s case manager changed over the summer. This situation was caused when the assigned case manager took a different job. As I was thinking about the new person and bringing them up to speed on Rachel, I realized I have not shared much about the vital role I believe a good mentor has played in Rachel’s school success. I am not referring to typical mentors either. Yes, it is important to have students as mentors. Rachel will have a lovely young lady as her assigned mentor at high school. She has some great mentors like Oksana, but I’m talking about a different kind of mentor. I’m talking about an adult, a teacher.

We believe that one of the reasons Rachel was able to be successful in middle school was because of her relationship with her 6th and 7th grade resource teacher and case manager Ms. Cox. We didn’t plan for that. It just happened. Rachel really needs someone she can go to and talk through things with. She needs an adult who understands her or who can clarify situations to help her process. She needs someone to love on her, support and comfort her, but she also needs someone who doesn’t overreact. She needs someone who can be firm and say time to dry your tears and get back to where you are supposed to be.

Ms. Cox & Rachel

Ms. Cox & Rachel

Rachel needs someone she can talk to about “girl things” and “teen girl things.” She needs someone she feels like she can talk to and count on. Even though Ms. Cox was not her 8th grade case manager, she was still Rachel’s go to person. Rachel knew she could go to Ms. Cox. I was up at school last week and this “mentor” thing is one of the topics we covered. I realized we had not really addressed and hit me this summer that this is a discussion we need to have. We need to try to identify someone who can be this person for Rachel. We think we have identified that person and the school representative I was talking with was in complete agreement that this was important and had already been thinking about it.

While it is important for Rachel socially, this also impacts her ability to do well in her classes. If she has the right person to give her support, she is better able to focus on her classes. Rachel tells us her brain is full. When it gets really full and the movie of her life gets intense (remember she sees her life as one ongoing Disney movie), she needs someone to help her process so she can re-engage. Ms. Cox was her usual go to person. She knew she could count on her even in tough times. To be successful in high school, she will need a new mentor.

Ms. Cox & Rachel at Guys & Dolls

Ms. Cox & Rachel at Guys & Dolls

Once Rachel had done something she shouldn’t have done. She was trying to impress a boy. It was crazy but she realized she had messed up. She was terrible upset and went to Ms. Cox. Ms. Cox calmed her and figured out who was involved in the situation.  She took Rachel and went and found the person who clarified what had happened. She realized Rachel needed to apologize and told her to do so. Rachel did and the student said it was okay.  Ms. Cox told the student “No, it was not okay. That was inappropriate and you need to accept her apology but tell her that this was not okay.”  Then, Ms. Cox got Rachel back to her own class.  And that was exactly as it should have been handled.

As I think about it, she had a mentor in elementary too: Ms. Stefanie her para. Ms. Stefanie had many of those same characteristics that Ms. Cox had. One of the main ones is that Rachel trusts Ms. Cox and she trusted Ms. Stefanie. Rachel knew that she could go to Ms. Cox and she knew that she could go to Ms. Stefanie.

Ms. Stefanie *& Rachel at Mayor's Awards program

Ms. Stefanie *& Rachel at Mayor’s Awards program

What I’m trying to communicate today is to think about this as you plan. We didn’t necessarily plan this and I didn’t even think about the importance of it until we were already fully engaged in the transition to high school. I am convinced that it has made a huge difference for Rachel and for us though. It has given Rachel a way to sort out her full brain and re-focus. You might just pay attention to who is around that can play that role in your child’s life to give them more support for success. Like friendships, I think the best mentors are the ones who have just happened as a result of natural relationships. However, I think you can have your eyes wide open and see if there is someone who seems to be filling or able to fill that role for your child.

I am certain that Rachel’s adventures in high school will give me many more stories to share. Now, I am off to enroll Rachel in high school!

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