Student of the Month                                                         March 2, 2006

Nice picture by Cheryl of an excited Rose waiting for her first ever student of the month award.

Blurry picture by Chris of Rose receiving her first ever student of the month award from her principal and vice-principal.

First Confession, First Connection, First Communion          

Spring 2006  

Initially my wife Cheryl and I were shocked to learn that our third daughter, Rose, was going to have Down syndrome.  We learned quickly that any child is a child first and Rose was definitely the child we loved.  We learned soon after what we should have already known; the path to a rich life was full participation in our community. Rose has always been fully included in her neighborhood school classroom with her ‘same-age-peers’.  But inclusion is more than just the classroom; it’s the ball field, the dance class, the Brownie troop and in the Spring of 2^nd grade it was achieving an important milestone for our Catholic family: her First Confession and her First Holy Communion. 

Rose started Sunday school, otherwise known as CCD, in first grade. General topics of Christianity were explored within the friendly confines of a volunteer teacher’s informal lectures, worksheets and coloring books.  But as second graders, they began the serious preparations for receiving their First Holy Communion.  I have to admit, I really wondered just how much of this Rose was going to understand, more so than I had with Rose’s older sisters, Erin and Katie We were carried forward more by the momentum of her staying on track with her same age peers than any parental assessment of her moral, ethical, or spiritual preparedness.  In hindsight, I had no reasons to believe Erin and Katie were any better prepared, but as ‘typical’ kids I didn’t think to doubt their readiness.

As the second grade CCD classes played out, it soon became apparent that most, if not all, of Rose’s fellow students were simply learning to act the role of understanding and not truly finding understanding.  Cheryl sat in on most of the classes as a helper and watched the students’ slightly dazed acceptance; a few demonstrated progress by memorizing and reciting key prayers, most students mumbled their answers and struggled to maintain their behavior, trusting to adults that their growing faith was real. The topics soon stretched from the practical, “Treat your neighbor like you would want to be treated,” to the extreme abstract of “Jesus died for our sins,” from communion being a last supper of bread shared among close friends thousands of years ago, to a small wafer of bread held in your hand that has somehow transforming into the body of Christ.

The first threshold of putting learning into practice was each child’s First Confession.  Certainly right and wrong are sometimes crystal clear, but most times not, especially to an eight-year-old.  The teacher explained the concepts of sin and forgiveness and penance. To help prepare she gave several examples of sins:  disobeying your parents and fighting with your brothers and sisters.  Blank stares.  This might just have seemed like too regular an occurrence to be sin.  The teacher tried a concrete example, “What if you were playing too rough with your friends and you broke a lamp?  That would be a sin.”  This seemed to click. 

Later, as the day for Rose’s First Confession drew close, Cheryl coached Rose, “So Saturday is your First Confession.  Do you want me to wait in line with you?  I can go first if you want.”

“I don’t know.  I don’t care,” Rose said. She was low-key and noncommittal.

“Do you know what you’re going to say?” Cheryl asked.

“Yup,” Rose answered.  They had already drilled through the sequence of prayers several times.

Cheryl hesitated and then finally asked, “What sin are you going to confess?”  This may seem like a strange question, but adult Catholics often reflect on their first confessed sin or first confessed ‘imagined’ sin. 

Rose answered with no hesitation, “I broke a lamp.”  Clearly she knew a good sin when she heard one.

“But, Rose, that’s just an example. You didn’t really break a lamp.” Cheryl said.

Rose just looked at her mom as if to say, ‘That’s all I’ve got.’

The day arrived, the church was full of young students and their families waiting for the chance to make their First Confession.  Several visiting priests had joined our Parish priests to help with the day. The students, families, and teachers sat in the front pews for a few words from the priests and some group prayers.  Then the students filed out to form lines with their families in the four corners of the church.  Rose and Cheryl waited in line near the entrance to the Sacristy as Cheryl tried to assess Rose’s mood on this momentous occasion.

“How are you doing?” Cheryl whispered.

“Fine,” Rose whispered back. And she did seem fine. Rose was a step ahead of her mom in line as they drew closer to their turn.

“Do you want me to go first? I can go first.” Cheryl asked.

“No. I can go first,” Rose was comfortable.

And then there was no one in front of them. The girl before Rose quietly came down the carpeted steps from the Sacristy. Rose confidently stepped up to take her turn without looking back. Cheryl watched Rose climb the stairs and disappear through the doorway, waiting alone. Many minutes passed. And then Rose appeared in the doorway and climbed down the steps to her mom.  Cheryl guided Rose to a nearby wooden pew and the two knelt together.

“Rose, what did the priest say?  What is your penance?” Cheryl whispered.

“I don’t know.” Rose whispered back.

“You don’t know?” Cheryl repeated, trying to think of what to do next.

“Yeah. The priest spoke real slow … and real low” Rose whispered again.

“Did he have an accent?” Cheryl asked.

Rose shrugged, “I couldn’t understand what he said.”

“OK,” Cheryl, ever practical, recovered. “Let’s just say an ‘Our Father’ and a ‘Hail Mary’. That should do it,” Rose readily accepted this plan. Cheryl handed her the page with the prayers listed and Rose read through them in a whisper.

Religion, spirituality, and morality are not Sunday-only occurrences. They are part of the fabric of every one of life’s moments. The next Friday, we enjoyed our usual family Friday night dinner out at a local restaurant. As a special treat, Erin , home from college on spring break, had joined us for the weekend and we were five again. As dinners were finished, the conversation rolled around to center on Erin and aspects of her recent coming out.  Erin, Katie, and Cheryl would be attending a True Colors conference together the following weekend and they were discussing different workshops they were considering.

Katie and Cheryl went on to explore aspects of Erin ’s relationships.  Rose sat on my lap.   We were both tired from the week and listened as the conversation rolled from one high-energy topic to the next.

“So, do you and your friends ever … call each other … the ‘F word’? Kind of like how black people call each other the ‘N word’?” Katie asked tentatively.

“Umm, I don’t know.” Erin was trying to find an example.

“I heard an interview on NPR,” I chimed in, always ready with a quasi-academic reference, “that in the 70’s a group of gay activists made a real effort to take back the word  ‘queer’. You know, ‘We’re here and we’re queer.’ They really tried to turn the meaning of the word around from an insult to a source or pride.”  The girls rolled their eyes at yet another one of dad’s NPR references.

“Yeah, but I don’t think I could ever say the ‘F word’. It doesn’t feel right,” Katie said.

Erin thought some more, “Yeah. I agree. It’s more of a gay person to gay person thing still.”

“Do you ever say it?” Katie asked.

“No, but I know a girl who’s gay, too, and when we’re goofing around sometimes we call each other or other gay girls D-Y-K-E’s.” Erin spelled out the last word, thoughtful of Rose’s listening ears. 

Rose said something and my attention shifted from the table conversation to Rose sitting in my lap.  The others continued their conversation without us.

“What, Rose?” I asked.

She had to lean into my ear to be heard.  “What’s the ‘N-word’?” she asked.

“Uhm…,” I hesitated. The thought that maybe I could avoid this conversation briefly flashed through my mind, but I decided to face her question. “The ‘N-word’ is a really mean word used to describe black people,” I said.  “It’s really mean and we don’t say it.”

Rose thought for a second. “Yeah, but what is it?” she asked again.

“Rose, you’re kind of young to know.” When did I have this conversation with Erin and Katie? They had to have been older than eight.   I tried to stall and dodge, “Maybe when you’re ten years old … or eleven. I could tell you then.”

Rose stared back at me. She wasn’t buying it.

“OK, Rose, I’ll tell you but you have to remember that it’s a very mean word and we don’t say it. OK?” This was explosive stuff.  I was not going to give her this word without being very specific on the limitations.  This was no time to play with nuances.

She nodded her head in solemn agreement.

“OK, Rose, the N-word is …” and I leaned as close to her ear as I could and over the noisy din of a crowded restaurant I whispered as clear a pronunciation as I could manage of the full N-word.

The next day Rose and I were sitting together on our family room couch.  Overnight, she had come down with a fever. I was keeping her company—okay, she was keeping me company as we watched the NCAA basketball playoffs.  On weekends we find ourselves spending a lot of time together.

“So, Rose,” I said absentmindedly, “Do you like basketball as much as football?”

“Yeah,” she said softly. I turned my attention back to the game.

“What’s the ‘F-word’?” she asked.

There were two ways to go with this but there was definitely no going back. Given last night’s conversation I knew the context of her question.

“Well, Rose, the ‘F-word’ is…” It’s was just the two of us, sitting close together on our couch. I spoke the F-word clearly and then I went on, “It’s a mean word that some people will call someone who is gay,” And I knew where this was going next.

Rose thought for a second and then asked, “What’s gay?”

I took a deep breath. She’s eight years old. I went on, “Well, you know how a man and a woman like Mommy and Dad can fall in love? Or a boy and a girl?”

“Yeah.”

“Well sometimes a man falls in love with a man or a women falls in love with a woman. That’s called being gay.”

She thought about for a few seconds, taking it all in.

“But you know the ‘F-word’, like the ‘N-word’, is a really mean word. We don’t call anybody that. We don’t say it.”

“Yeah, I know. It’s a sin.”

And just like that she blew me away. Forget broken lamps and First Confessions, Rose had made the connection, drawn the circle closed around everything she had been taken in and learned the big lesson. More than learned it, she was ready to live it.

“Yeah, saying mean words is a sin.”  I took a deep breath and settled back into watching the basketball game.  How could that compare with what had just happened? But I was still tired from a long week and looking to relax and recover.

“What’s the ‘A-word’?” Rose asked.

I though about it for a second, replayed the last week through my mind, a decided:   nobody’s mentioned any ‘A-words’ recently.  And I wasn’t going to volunteer any, not if I could help it.  I already felt like I was on thin ice as it was.

“There’s no ‘A-word’, Rose.” I looked at her. 

She bought it, thought for a heartbeat.

“What’s the ‘B-word’?”

“There’s no ‘B-word’.”

“What’s the ‘C-word’?”

Given ‘N’ and ‘F’ she had picked up the pattern and circled back to the beginning of the alphabet to start working through the whole list, to see what other gaps she could fill in.

“Rose there’s not a word for every letter of the alphabet, just a few of them. OK?” I laughed. It’s nice to be amazed by your children. But I was also thinking that there are more letter words, like the ‘R-word,’ out there and waiting for her. She knows she has Down syndrome but she gives it about much weight as being left-handed. We’re going to have to talk about that soon, very soon.

                    Rose                      with her Godparents                    with her family

                                                  Aunt Liz and Uncle Joe            Erin, Cheryl, Chris, Kate

with her pew banner

with communion class

Rose is first row on the right

Bobcats Softball                                                    Spring  2007

This was first year of real softball, post Tee ball.  Well, its not full blown softball.  The rules are modified quite a bit to bring the game to the younger kids, all girls, mostly second graders. Some of the modifications; the coach pitches to their own team, a team bats until they go through the batting order or get three outs and the game ends after 90 minutes so usually they only get 3 or 4 innings in. In general the idea is to make the game accessible and fast moving. As the kids get older the modifications are dropped.

But more important for our family, this was the first team or major activity that Cheryl or I weren't the lead-adult. We had been doing a lot lately and we wanted to make a conscious effort to take a step back and let Rose learn to follow the lead of another adult.  A mom that had never coached before ended up stepping in and taking the job.  And Coach Stacey did a great job. In principle, as a father of three daughters, I was thrilled to see a women coaching a girls team.

Sometimes we do have to keep a look out for adults that treat Rose with good intentions but a little too much "niceness."  At the first game I noticed one parent helper grabbing Rose's hand and escorting her off the field when she was out at second one play.  They meant well but I knew that Rose definitely knew how to find her way from second base back to the bench.  Rose is tiny for her age and doesn't always assert herself so its easy for adults to try to help out too much based on their own low expectations. 

In this case I did the right thing right away (not always the case.) I immediately approached the parent.

"Thanks but if you just tell her what to do she can find her way."  I tried to have as nice and non-judgmental tone of voice as possible but I wanted to be direct. and to the point.

"Oh, OK, no problem."  

I mean all the kids needed varying degrees of adult hovering including Rose. I was just giving the other parent some useful information so they could get to know Rose sooner and have a better idea where to set the threshold for hover intervention. They were receptive.  All part of a good season.

There was another memorable moment.  In another game, after our at bat, Coach Stacey gave all the kids their fielding positions and they headed out on to the field.  I was in left field, doing the parent helper hovering thing and I noticed that Rose had stayed on the bench, unusual for her, I was stumped. 

I shouted to Rose, " Rose, come on we need you on third."

She didn't answer me. I walked over to Coach Stacey who was hovering behind third base.

"Rose isn't coming out. I don't know why," I said.

Coach Stacey thought about it for a minute. 

"I think I might know," she said and then ran to the bench.

Less than a minute later Coach Stacey and Rose both ran back towards third base. Rose settled into the action and Coach Stacey went back to hovering behind 3rd base.

I slid over, curious, "What was it, Coach?"

"I asked her if she was worried about making the throw from third to first base," she said. "Rose said she was.  I told her she could just throw the ball to the pitcher and they could throw it the rest of the way to first."

I shook my head, amazed that she had figured out exactly what was bothering Rose, exactly what the solution was, and then gotten Rose back on the field, happy and ready to play before the first pitch was thrown. I had no idea how she did it. I was just glad she did. 

I learned two lessons here. The first I've learned over and over again; Rose is thinking much more complicated thoughts then she can easily express and most people, including myself, are ready to search out. And secondly, and more importantly, the best help, the best insights, the best solutions, sometimes comes from unexpected places. 

Rose on Opening Day

Teammates (that made it to picture day) with Coach Stacey

Rose at the bat .... its a hit

... Runner on first ...

... and she scores !!!

Memorial Day Parade                                                    May 2007

Rose isn't actually leading the parade but she looks like she's ready to

Notice High School marching band behind the Brownies...

...that's Katie playing saxophone in the middle of the third row

I belong to a list_serv for families in the Connecticut area interested in Down syndrome. It's a very helpful resource for folks like myself looking for answers to tough questions.  Sometimes differences rub the wrong way and become magnified more than the things we hold in common.  Below is my attempt to emphasize and praise our common gains. I posted this on Mother's Day.  So Happy Mother's Day. 

Sometime in the past, not long enough ago, in the time my grandparents were raising their family, it was considered acceptable to deny the humanity of people that carried the label of Down syndrome.  Family life was denied, a life in an institution was considered the “best for all concerned” and basic medical and educational opportunities weren’t even given a passing thought.

 Along the way, fortunate for us that live today,  brave steps have been taken, at first challenged and faltering, to right these wrongs. 

Sometime in the 1950’s and 1960’s, a family like the Wood’s decided to take the courageous step to challenge accepted thinking.  They took their daughter with Down syndrome into their own home to raise her as a full member of their family.

Sometime in the 1980’s and 1990’s a family like the Denin’s decided to take the path least traveled and challenge accepted thinking.  Sacrifices were made and new understandings were made; their son with Down syndrome went to his neighborhood public school, more battles were fought and won and he competed on his high school swim team.

Sometime this in the 1990’s and this century, a family like the Cholewinski’s took new steps to challenge new perceived limits. Their daughter with Down syndrome shared the same classroom as her neighborhood friends to learn her reading, writing and arithmetic. With her parents’ firm resolve, her future was not defined by a number; her possibilities were all that a teacher and student could accomplish

Along the way, much progress has been made and while much work remains, there is no doubt that families like yours and mine have benefited greatly from the sacrifices of those few that dared to take the first steps to defy the ‘common sense’ and accepted practices of their day.  These efforts, always difficult and always challenged, are only with slowly focusing hindsight appreciated simply as how humans should be treated.

Sometime in the future, hopefully the not too distant future, a family like yours and mine will take steps that we might not understand today, first steps that will be challenged by just about everybody, steps that will eventually assure that people’s potential will no longer be judged by their differences, and we will all share equally in our human community.  

.The world we live in today is so much better than yesterday. Though there are times we may argue, fuss and fight there is no doubt that, along the way, we all benefit greatly from the sacrifices of the first few. We all share in the progress.  Thank you.

Our Vision for Third Grade                                         May 2007

Cheryl and I write an updated Vision and share with our PPT teammates in the spring when we are developing new goals and the following fall at the start of a new school year when we are meeting the new teachers.

As Rose’s parents we are very happy with the educational success Rose continues to enjoy through each grade at Clover St. School.  Each school year, with the graduation to a new grade and a new teaching team there is a certain fear that we are sailing off into new uncharted territories.  So much of a student’s success depends upon the positive and welcoming teacher’s attitude supported with the necessary resources from a willing administration.  Through 1^st and 2^nd grade, Rose has been fortunate to find this positive attitude in her classroom.

Our vision for Rose is that she will develop into a self-confident student with a positive outlook of her world. As Rose develops into a self-aware mature individual we are concerned how she will perceive herself particularly as reflected by her school experiences.  This year we’ve started to talk to her about Down syndrome.  She knows she has it and she knows not everybody does.  (At first she thought that it was something everyone was born with but grew out of.) We are struggling to explain a genetic condition to an 8 year-old, in fact we have a difficult time providing a practical definition but we will not frame it for her in terms of what she can’t do. For example; “you can’t learn that because you have Down syndrome.”  Instead we prefer to tell her, “Everybody learns at a different pace and in different ways.  The important thing is that you’re learning.”  Treating all of Rose’s efforts and accomplishments with respect is a vital part of developing her long term confidence and interest to be a life-long learner.

Our vision for Rose is that she will be educated in a fully inclusive setting. We don’t want pull-outs and we do not want a one-on-one para for Rose.  We gladly accept any small mistakes or problems that may arise as the team works towards this ideal.  As Rose continues to move through school with her age-group peers the contrast between her abilities and her non-disabled peers may grow wider and the urge to group her differently or isolate her may frequently come up.  We feel the challenges are best met through preparation and planning.  We gladly support any efforts needed to bring professional training in differentiated instruction and other related areas to support an inclusive education.  We feel this will benefit all the other students as much as they will benefit Rose.

Our vision for Rose is that her 3^rd grade team of teachers will be better prepared than any other year to effectively teach Rose now several years into an inclusive school environment.  Teachers will have a number of strategies to modify and adapt the material to Rose’s learning needs. The classroom will be a heterogeneous group and there will be a natural proportion of students with disabilities to those without IEP’s.  We would like to discuss what is or isn’t working this year in 2^nd grade and how these lessons will apply to 3^rd grade. While focusing on specific IEP goals is important, the structure and preparation of the 3^rd grade team is an even more important factor. How are students grouped this year in 3^rd grade?  By classroom, in class flexible grouping? What are the co-teaching arrangements this year?  How is planning time accomplished?  Who is responsible for modifying and adapting course material?  Are there extra efforts planned for Rose’s upcoming Triennial?  When are CMT’s? What adaptations or modifications are planned?

Our Vision for Rose is that we will continue to enjoy a positive, open and creative relationship with out PPT Teammates.