Today is the last day of school. It is the last day of our first year of middle school. Since I've worked with people pretty much my entire adult life, I know what we fear the unknown. Such is certainly true for middle school and maybe more true when you have a child with special needs. I have an only child so I have observed, listened and prayed for others who have gone through this but this is my first personal experience with my own child. Last night this is what we told Rachel:

"Mommy and Daddy are so proud of you. You have gotten yourself up every morning  with no help. You've made it to the school crossing on time with all your things. You have worked hard and made good grades. You have made some new friends. You dissected a rat. (I am told the rat's name was "Mr. Lang" and he had eight babies. Hmmm?) You tried out for cheerleader and did your best. You have managed your locker and made it home with your PE clothes every week. You were chosen the Queen of Hearts because you are kind.  It’s been a great year! "

We ask Rachel what she had liked most about middle school and she said, "Lockers, hanging out with my friends, lunch and clubs." She has loved the clubs.

Now a few tips from Mom and Dad. A year ago we had a little fear, some excitement and some apprehension. We set out early to put in place supports that would help Rachel to transition smoothly and to have success. For us that included a key lock for her locker instead of combination. All of our middle school students have ID badges and many wear lanyards so Rachel's key was on her lanyard and she was no different than the other students. To my knowledge, the key was only locked in the locker once. An overall plus has been overall communication. There have been some bumps in the road. I'm not sure why but communication seems to always be an area for improvement. Rachel communicates but as she would say, "her brain is full" and it is often hard for her to relay accurate information. I know that is true for typical middle schoolers so magnify that! Consistent communication from a Para and from teachers with homework, lessons, instructions and concerns has been critical. Her resource teacher will call and tell me something has happened. She'll say, "This is not a big deal but want to be sure we are handling it the same way." I appreciate that working relationship so much. The office has been patient with my 10 million questions. The administration has listened to us when we said Rachel will need this or we need to make a change. They have trusted that we know her best. We have trusted them to do their part. Teachers: I've already blogged about her quality teachers. They have been superb. They have been a true key to success not just academically but socially. They all keep an eye on the students and I think Rachel gets a little extra attention in a good way.

The entire team, and that's not just the legal IEP team I'm talking about, has been creative and willing to think out of the box and make changes or come up with a new way of doing something to meet Rachel's needs. When we realized that she was struggling in the mornings because of the unstructured friend gathering time, they gave her a job and fit it with some of her IEP goals. So she builds more confidence and exercises leadership skills and we take care of a problem.

Our school social worker has been a gift. She has had Rachel in a lunch bunch this year and a girl's group. Of course, these are aimed at working on social communication.  Rachel looks forward to the days when they have these groups and we have seen some growth in this area.

Rachel has had some tears and insecurities. She has told teachers that she doesn't have any friends. She likes boys (a lot!) and doesn't know what to do with that. Sounds like a typical adolescent girl to me. Conversations are faster and the topics are harder for Rachel to follow. That frustrates her but she is getting better at communicating to us and other adults that these are struggles so we can help her with this.

Finally, for Rachel, one of the best things we all did was make sure she had peer support. Some of her friends contacted the school and said I want my child in some classes with Rachel. Teachers identified students who were positive role models. Jonathan and I believe this is one of the keys to success for Rachel and many other students with special needs. This is a natural environment. It is natural supports and the kind of supports that we hope can help her be successful throughout school and someday in a job. We also hope it builds the kind of support who will speak up for Rachel when she needs it.

Today as I sign off from the 6th grade I will tell you that it hasn't been perfect. Nothing ever will be but I can say with confidence we have had a positive experience.   We've all made it work. At the end of the day, I hope it is not only Rachel who has won but the other kids with special needs and their families, the teachers and the friends who will speak up for the Rachel’s of this world.  I feel like I am writing an “I Have a Dream” speech.   Really, I guess I am. “I Have a Dream” and today we are one step closer.

Yesterday, Rachel came home with her yearbook. She was very excited to take it to her room and study it. I flipped through it and came to the King and Queen of Heart's pages. “What," I wondered, "are the King and Queen of Hearts?" I snagged my reading glasses because I wanted to look to see if I knew any of the winners. It seems on Valentine's Day each teacher gives out kindness hearts to student who they believe to be kind or who are showing acts of kindness. Winners are chosen on each grade level and each grade level has a King and Queen of Hearts. Cute little idea. I presume it is another way for the school to promote positive behavior and possibly anti-bullying. There were four queens in the 6th grade. Just one king. Lucky guy got have his picture made with four different girls. All of the girls are cute as can be but more importantly they are kind. That means more than being cute in my book. As I looked I realized that Rachel Mast was one of the queens! "Did I know about this?" I thought. Then I recalled that on Valentine’s Day one of the kids told me something Rachel winning the Queen award. I didn't think much of it. You know with middle schooler's you are never quite sure about what you are hearing. I thought it was probably some project they were doing in one of their classes. I hadn't heard about a queen contest so I just thought whatever it was seemed nice. I didn't inquire. The 6th grade girls must be a very kind bunch because they had four girls tied so they had four queens. Rachel was one of the 6th grade Queens of Kindness. I learned this morning it is part of the school's ongoing efforts to carry out Rachel's Challenge.

So I can now honestly say Rachel is the Queen of Kindness. I am proud to live with the Queen of Kindness. I'm hopeful that some of it will rub off on me!

Kindness is defined as the state of being kind, being marked by good and charitable behavior, pleasant disposition, and concern for other. It is known as a virtue and recognized as a value in many cultures and religions.

This weekend was beautiful so all of our meals were out on our screened porch with a bit of a cool breeze. Rachel loves to eat out there. Saturday morning I took my computer to the porch and drank coffee and caught up on emails and Facebook with the rising sun. It was soothing.

Today, I simply want to share a recipe. This is semi-new. I had made this once before but I always change it a little. A good vegetarian dish and a relatively low fat dish as well (especially if you leave off some of the cheese or the sour cream!). Rachel loves it. Jonathan is a meat eater and he liked it but it isn't on his favorites list. I'll be interested in what some of you think.

Spinach and Black Bean Enchiladas

1 package creamed spinach with low fat sauce 

2 cups frozen whole kernel corn

1 can black beans, drained and rinsed

1 tsp.  Emeril’s Southwest Seasoning (or chili powder)

½ tsp. cumin

1 tsp.  Garlic salt

1 - 16 oz.  Jar salsa (I used Pace’s Chipotle Salsa)

6 - 8 tortillas (I used whole wheat)

½ cup sour cream (I used low fat)

1 cup Monterey Jack (or low fat Jack Cheddar mix)

In a 2 quart covered dish, cook spinach and whole kernel corn for 8 – 10 minutes stirring twice during cook time. I leave the top cracked for venting. Stir in beans and seasoning. You may want to adjust seasoning based on your likes and dislikes. Spray bottom of 9 x 13 inch baking dish with non-stick spray. Spread ½ cup salsa on bottom. Place 2 tablespoons or more of spinach mixture in each tortilla roll and place in dish. I did six as opposed to eight. Spread sour cream on top of tortillas followed by the remaining salsa and cover with the cheese. Bake covered for 30 minutes. I remove the cover for last 10 minutes. You can leave out the sour cream and use less cheese to make this healthy. Yummy! 

 I must admit I'm a little disappointed. We have a friend with Down syndrome who has been bullied. She has not had a good school experience in high school so far but I’m hoping it will get better. I decided I was going to do some of my own private investigating. I talked to some good kids. Kids from church and Christian Youth Theater and kids I’ve just met along the way who attend  these schools. I wanted their honest answers.

The overall responses went something like this:

"I don’t really do much with those in Special Ed, but I know people who work really well with those kids.  I do see administrators and teachers watching when they interact, just to make sure nothing is going on.  I've never seen them have to intervene. I love how active the Special Ed kids are with the rest of our school and how they don't stay in their part of the building. I feel like our school really accepts the kids in Special Ed."

Let me be clear. I’m not disappointed in these students who gave me honest answers. I don’t why but maybe because I am a realist. Let me be clear again, the bolded words were not emphasized by these students. That is how I heard them because references to “those” and “them” and “segregated portions of the building” all sound that way to me.  Trust me when I say that these students would all be sad if they knew how sad their answers made me. They thought their responses would inspire hope and confidence in me.  

Now, I shouldn’t be surprised. I was chatting with a school resource teacher the other day (not my daughter’s fabulous teacher!) and she said “Autistic kid”, “Down’s kid”, “Down syndrome girl” and “I have some who are really LOW” over the course of a five minute conversation. Finally, I could stand no more and I politely (really I was!) said that they aren’t Down’s kids and gave an abbreviated people first language lesson. It’s about respect and professionalism.  I guess that I think professionals in a leading school district should know better. I shouldn’t have to correct them. They shouldn’t get a pass but these are the same people who are models for our students and in this case other teachers, too.

Why am I disappointed? I guess I am disappointed because I can’t figure out what to do about the disconnect. The compartmentalization.  We are nice to them but do you include students with intellectual disabilities? Do you invite them to eat lunch with you like you do your other friends? Do you invite them to the movie with you? Do you walk to class with them or do you truly see them as “those students” and you are doing them a favor by being their friend or being seen with them? Maybe that’s a little harsh but that is how I feel at this moment.  Sure, you will intervene if you see bullying or mistreatment, but do you include them in your world? Have you ever considered how lonely they may be? 

I don’t have answers. I just know that reality is there is still a disconnect. 

Why this picture? Just a group of  girls taking a break for a picture during a party. Will they include her when they get to high school or as adults? I hope they break the cycle of the disconnect.

Happy Mother's Day to my mom and all the wonderful women in my life who play the role of mom!  A very special Happy Mother's Day to the mom's of kids who are differently-abled. A role that only another mom of someone who is differently-abled truly understands. Today, I simply give you Erma Bombeck's essay.  For some reason, it always speaks to me. I think because I see myself in the essay. Not in the mom who doesn't believe in God but in many of the other characteristics she describes. I am blessed to be Rachel's Mom.  Happy Day to all of you.

God Chooses A Mom For A Disabled Child By Erma Bombeck

 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, Nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudlege, Carrie; twins; patron saint…give her Gerald. He’s used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She’s so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel"

"But has she patience?" Ask the angel.

"I don’t want her to have too much patience or she will drown in self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence. She’ll have to teach the child to live in her world and that’s not going to be easy."

"But, Lord, I don’t think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness"

The Angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.."

"And what about her patron saint?" asks the angel, his pen poised in mid air.

God smiles. "A mirror will suffice."

NOTE: I know that this is not people first language nor is it necessarily political correct.  I know some of you will notice this and so do I. But I do love Erma's writings and it was written in another time.  I hope you can put all of that aside and really think about what she is trying to communicate.  Thanks to Erma for leaving so many jewels for us to ponder and for laughter!

For several years as a token of our appreciation, we do a little luncheon for Rachel’s “Team” during Teacher Appreciation Week. For those of you who do not have IEP teams, Rachel's have ranged in size from eight to 14 people and that doesn’t include the paraprofessionals who work with her! For us, we want to do something for the significant players in Rachel’s education and that does include the paraprofessionals. I tried to think of something affordable that would convey some appreciation to these people who work so hard for Rachel and other kids. You’ll be surprised to know - I cheat a little. I actually don't invite her team. I invite the people who work directly with her on a daily basis. This year nine people will be celebrated today (actually 11 but two couldn't come.) I always work with her resource teacher. We reserve a room at the school for an extended time, and I send Evites to the invitees. I do an extended time so that most everyone can drop in.  I use paper china, as I call it, so anyone who needs to take their food and go can. The significant players seem very appreciative and I truly enjoy it. If you are looking for something different to honor teachers, this is an idea for you.

Today's menu is: Chicken Cream Cheese Enchiladas, Black Bean Corn Salad, Guacamole, Tomato Salsa, Key Lime Pie and German Chocolate Cheesecake. I prepare the same main dish and Key Lime Pie every year. The sides and second dessert vary each year. Last year I posted my Key Lime Pie Recipe so today, I'm giving you the German Chocolate Cheesecake. Lifted from my days as a 4-H Extension Agent, this was an Arkansas Dairy Recipe Contest entry from the mid-nineties. It is a bit of an unconventional cheesecake because you make it in a 9 x13 inch dish instead of the traditional spring form pan. It makes a lot and it is rich! I sure hope the teachers enjoy it today!

German Chocolate Cheesecake

Crust:

1 ½ cups graham cracker crumbs

½ cup pecans, chopped

½ cup sugar

1/3 cup melted butter

Preheat oven to 350 degrees. Combine crumbs, pecans, sugar and melted butter. Press in to bottom of 9 x 13 inch baking pan.

Cheesecake:

3 - 8 oz. packages cream cheese, softened

1 - 14 oz. can sweetened condensed milk

4 – 1 oz. packages sweet-cooking chocolate, melted

3 - Eggs

1 Tablespoon vanilla

In a large mixing bowl, beat cream cheese until fluffy. Gradually beat in sweetened condensed milk until smooth. Add chocolate, eggs, and vanilla. Mix well. Pour over crust. Bake 40 minutes or until center is set. (Hint: place a pan of water in bottom of oven to prevent cracking.)

Cool. Top with Coconut Pecan Topping (below). Chill.

Coconut Pecan Topping:

1- 14 oz. can sweetened condensed milk

3 egg yolks

½ cup butter

1 1/3 cup flaked coconut

1 cup pecan, chopped

1 teaspoon vanilla

In heavy saucepan, combine sweetened condensed milk and egg yolks; mix well. Add butter. Over medium-low heat, cook and stir until thickened and bubbly, 8 – 10 minutes. Remove from heat, stir in coconut, pecans and vanilla. Cool 10 minutes. Spread over cheesecake. Cut into squares. Refrigerate leftovers.

 This is the finished German Chocolate Cheesecake and the centerpiece for today. You can see that floral arrangements are not my strength but it is bright and cheery! 

Yesterday Rachel came home and one of her first proclamations was that she won an award in Social Studies. Evidently, they gave out achievement awards and Rachel received one for Social Studies. Like most folks, Rachel is very motivated by awards. She really likes them in the form of certificates and trophies and gift cards. Her gift cards of choice involve ice cream. Once she was given a soccer ball as her end of the year award for soccer and her enthusiasm was... let's just say it was waning. Yesterday you would have thought she had won a year's worth of Culver's ice cream sundaes. She brimmed with pride as she told me about winning her certificate of “chievement.”

I believe Rachel’s 5^th grade teacher was the impetus for her desire to learn Social studies. Rachel told me one day that she could listen to her teacher talk about the Revolutionary War all day. That is saying something! I think of the reason she loved the teacher and really started developing an interest in Social Studies was because of the way the teacher helped Rachel to learn. One thing she did was figure out that if you gave Rachel a true/false test, she didn't do as well as if you gave her a yes/no test. So we now apply that to many of her classes. Since I am on my praise and adoration tour of teachers, Rachel's Social Studies teacher this year has continued to make her want to learn. He has helped to make it meaningful to her.  Again, part of that has been his willingness and ability to figure out how to help Rachel to learn material. Varying her projects a little like allowing her to do a PowerPoint Presentation about China thus incorporating some technology, social studies, and speaking skills. She loves to get up and give a presentation. I have been so impressed with his teaching and ability to accommodate Rachel. I told him he should be training other general education teachers in how to accommodate students with special needs in the general education classroom.

Last night Rachel sang in the end of year choir program. She has been taking voice lessons and I am very proud of how she is learning to follow the choir director and blend with the other students. She has worked hard and she didn't win an award for the quality of her singing but if they gave one for hard work and love for singing, her trophy would be the biggest. Again, her choir teacher has been a big help by providing us with music so Rachel’s voice teacher could work with her and give her that extra exposure to words and music.

Yea teachers. Yea Rachel!

This week is National Teacher Appreciation Week! I hope you have said thanks to a teacher past or present! I have been praying for Rachel's teachers since before she was born. We have had some topss turvy IEP meetings. We have not always agreed on everything. BUT - I cannot imagine that Rachel could have had better teachers. From the time she started her pre-preschool program through preschool, elementary and to middle school; she has had amazing people in her world. I have been thinking about what I would tell parents of kids with Down syndrome about what I think makes a good teacher. That made me think through all the teachers Rachel has had and I have a just two things to share today.

For us, number one is the willingness to believe that Rachel can learn. She may learn differently and she may not learn exactly what others kids learn, but she will learn. Her first grade teacher told me that when she learned she would have Rachel in her class, she was a bit nervous. She said that she had never taught a child with Down syndrome before and she was afraid she (the teacher) would fail. It didn't take long for her to realize that everyone learned differently. Rachel would learn differently and she figured out how to help her to learn just as she had all the other students she had taught. All kids learn differently. Some just don’t have a diagnosis. She was a great teacher for Rachel and they fell in love with each other. She told me when we moved on to second grade that her son ask her what child she had taught (over the course of 20 years) who was her most memorable. She said, "That's easy. Rachel because of what I learned from her." She told me “I am a better person and a better teacher for having had Rachel in my class.”

HIGH EXPECTATIONS. I can’t really separate high expectations from number one. We have high but reasonable expectations for Rachel. One of her teachers told me she didn't read her IEP for the first two weeks of school because she wanted to see what Rachel could do, and she didn't want to have any preconceived notions. I love this! This same teacher sent home a math paper one day that said, "Rachel is doing great on double digit addition. We haven't started regrouping yet." This was most interesting for two reasons. One was because I had no clue what regrouping meant. Two was because I knew Rachel hadn't started double digit addition. The general education teacher said something was going on that day so the routine was a bit different and she just decided to see what Rachel could do. She gave her the same sheet as everyone else had and guess what? She did it! High expectations.

So to Ms. Diane, Lynn, Shadrack, Dickey, Brewer, Morphis, King, Reed, Holtgraver, Stowers, Gad, Cox, Lang, Marra, Taylor, Mr. Murray and anyone else I might have missed "Thank you." I believe teaching is the highest of callings, and I believe it is a call. Thanks for answering the call and making a difference in the lives of so many children and especially for one Rachel Mast!

This week I've been blogging about bullying and specifically how that looks for those with intellectual disabilities. My intent was first to educate you that bullies happen. They have always been with us and they will always be with us. Almost everyone has an encounter with a bully or at the very least is treated with something less than kindness by other human beings. Second, my intent was to educate and inform you that it happens more with people with intellectual disabilities, and that their abilities to counter it are more limited than the typical populations. People shriek when I tell them these numbers provided by the National Sexual Violence Resource Center: It is safely estimated that as many as "83% of adult females and 32% of adult males with developmental disabilities will be victims of sexual assault." That should make all of us pause and take a look.

Mostly, I wanted to persuade you to stop and take inventory about what you can do to make a difference. My intent is not to get sympathy for Rachel for anything in the past or anything that may be happening now. We dealt with the past and we will continue to work to deal with things that may be happening now or in the future. What about those who don't have a mom who can be as involved? Even with an involved mom, my child has been a victim and she has decent communication skills. What about our friend who has no diagnosis and has virtually no verbal communication and limited communication with her technology devices? There are so many what about's and what if's but the question is still what will you do to be a part of the solution and not the problem?

May I recommend - Don't be naive with your own kids. Stay on top of things especially with the social media and cyberspace liberties we have. If they are receiving texts that make fun, bully or exploit and they do nothing, they are as guilty as the person doing it - in my opinion. Based on some of the messages I received, most of you agree with that. The same can be applied to adults.

Do you or your child have a friend with an intellectual or physical disability? I hope you do.Talk with your kids about what is going on at school. Have some direct questions about a child they may know who has a disability and how that child is being treated. Encourage your child to be a friend or go find somewhere to volunteer where you can be friends with someone with a disability. Invite someone to go to church or a movie or for dinner. Be a real friend that includes a person with a disability and goes a step farther by being the eyes and ears for that person. I think one of the hardest things for kids is to know where to go when something happens. Now, I agree that you are just as guilty if you stand by and let it happen but we as adults to that every day. Be a good role model for your children and help your child ( regardless of age) get information to the person who can help. Also, maybe you need to go to the parent of the child with the disability. He or she may not know what is going on if you don't. I've had several moms through the years who have contacted me to say that her child came home and told them something that happened with Rachel. The child was afraid of being targeted or called a "tattle-tale" so they told the parents. Once I had the information, I could help protect everyone's children by going to the appropriate person. Often times, it helps to be able to intervene before it happens - just when someone hears someone talking setting it up.

Finally, I was motivated to blog about bullying this week because one of our sweet friends, a high school student with Down syndrome, has been a victim. Apparently, this has gone on for a while and no one noticed or cared.  I’m not sure which.  Eventually, it took it took its toll physically and the person started having some health issues and at last, depression and anxiety set in. This is when mom started asking more questions. She has intervened and I suspect this friend will be fine but it didn’t have to be this way.  What will you do to be part of the solution?

I've used this photo before but it just begs to be in this spot. This is our friend. She is a little bitty thing but she stood up to a boy who was much bigger than she is during PE class. He was being unkind to a young lady with Down syndrome, and she basically told him never again would he do it. And he hasn't.  Courage to do the right thing.  Another person we could all leran a lesson from.

I am thinking of Rachel and what it has looked like for her. It was elementary school. The BULLY is an ordinary girl and her friends. The BULLY's parents are involved at the school. They might be shocked to know - if they knew. The BULLY’s pulled in her buddies because it is more fun with friends. I guess it must be more fun to trick a girl with Down syndrome into going and telling a boy she likes him and then laughing at her hysterically than it would be a typical person. Really who would believe that Troy Bolton was really coming to visit? Let's see? Rachel maybe? Then, the BULLY thought it would be really funny to tell Rachel that the love of her life, Troy Bolton, really was coming to see her and wanted to marry her. Rachel is ecstatic and starts to tell her friends and at the height of her excitement, the BULLY looks at the other girls and starts telling them how funny it is that Rachel would really believe that. Everybody laughs. Rachel doesn't laugh. She cries. Her close friends don't laugh. They try to comfort her. They are a little tentative because they may become the BULLY's new targets. Rachel hasn’t been the only target.  She just happens to be THE target right now,

Then, something similar happens again except this time Rachel's friends intervene and say "Rachel, don't do that. They're trying to trick you." The friends tell an adult who gets the girls. Literally gets the girls and says, "What is going on." They plead their sad little case and then they tell Rachel how sorry they are. Rachel says okay. "They are my friends, mommy. They are nice to me now. They love me."  All is forgiven by everyone but maybe Rachel's parents and the adult who "got" the girls.

How do I help her to understand that the wolf really does come in sheep's clothing? Rachel has great intuition about lots of things. But not about this. She believes that everyone is nice and loves her and you just say you are sorry and you mean it and all is okay. So , we (her parents) and the other adults in her life who we trust, work hard to know who her friends are and to have people near her who will stand up for her and will tell an adult when something is happening that is not okay.

One of Rachel’s friends told me the other day that she had “heard” that a girl (don’t know which girl) is trying to tell Rachel that a boy likes her and she should go and tell him she wants to be his girlfriend.  She told me she told Rachel not to do that.  I thanked her for telling me and asked her if she thought she could tell an adult at school. She said she would. They will try to investigate. The wolf comes in sheep’s clothing though.

Remember yesterday’s blog? Yes, most of us are made fun of or bullied at some point in our life but Rachel is just a little easier prey because she does have an enviable spirit of love and acceptance for almost everyone. Yes, most kids with cognitive disabilities are easy prey. What will you do to stop that?