Friday, July 15, 2011

What I Want to say to our school community

(Hopefully most of this will be sent out in some form. For now, here is my draft:)

The original announcement about Sofia said “Our goal is for Sofia to become part of the MWJDS community.” In fact, Sofia has been part of this community since she was born. She even had her Simchat Bat (baby naming ceremony) here at MWJDS, back when her big brother Samuel was in kindergarten! Sam and his classmates are entering 7th grade now, and as far as Sofia is concerned, she is welcoming all her new classmates to her school!

Sofia has Down syndrome. The medical term is Trisomy 21—there are three copies of the 21st chromosome instead of two. Down syndrome is a syndrome (named after Dr. John Langdon Down); it is not a disease, it is not contagious. Sofia is likely not the only person you know who has DS. In fact, Down syndrome occurs in one in every 691 live births.

In Mishnah Sanhedrin, the sages asked: “Why was only one person created by God on the sixth day of creation? It is to indicate the greatness of the Holy One, blessed be God. A human being mints many coins from the same mold, and they are all identical. But the Holy One, Blessed be God, strikes us all from the mold of the first human and each one of us is unique.”

While there are many shared traits amongst people with Down syndrome, every person is unique. You will find that Sofia is more like her brothers, Samuel and Micah, than she is like anyone else with DS.

Usually, mental development and physical development are slower in people with Down syndrome than in those without the condition. Your children may ask about Sofia’s speech, which is the most obvious delay. Sofia’s first expressive language was American Sign Language (ASL). She can hear clearly, but it takes longer to learn to speak. So she may not say as much as the other students. But she is certainly listening, and she will make herself understood when she wants something!

Elsewhere in Mishna Sanhedrin, we are told: Anyone who deprives a student of being taught Torah is as if he robs him of his father’s legacy. Our legacy is Torah. At MetroWest Jewish Day School, each child is an individual, with his or her own strengths or weaknesses. Child-centered learning has been a core value of the school since the beginning.

We are grateful that we were able to work out the partnership between MWJDS and the Ashland Public School. It has always been our goal for Sofia to attend MWJDS with her brothers. But MWJDS is still a small school, and there are resources available at the public school that we just don’t have here yet. Sofia will be receiving Speech Therapy, Occupational Therapy and Physical Therapy during her time at the public school, in addition to special education support in her Inclusion classroom.

When Sofia comes to MWJDS, Hamorah Amy will reinforce what she has learned in public school, and will add a Judaic curriculum for Sofia. Hamorah Nitzan will work to include her in the kindergarten class and the wider school community. At home, we will supplement the Hebrew language instruction that she will miss, so that she can still keep up with her MWJDS classmates.

I want to make sure everyone in our MWJDS community understands that there are no stupid questions. Please feel free to ask if you want to know something about Sofia.

But our tradition also teaches that words can hurt. In the Torah, we are enjoined not to wrong one another, meaning not hurt one another with words. Instead we are to consider the effect of our words on others carefully, reflecting on the word choices we make and their impact on others. The Jewish tradition places great emphasis on not hurting another’s feelings.

In a small Eastern European town, a man went through the community slandering the rabbi. One day, feeling suddenly remorseful, he begged the rabbi for forgive­ness and offered to undergo any penance to make amends. The rabbi told him to take a feather pillow from his home, cut it open, scatter the feathers to the wind, and then return to see him. The man did as he was told, then came to the rabbi and asked, “Am I now forgiven?” “Almost,” came the response. “You just have to do one more thing. Go and gather all the feathers.” “But that’s impossible,” the man protested. “The wind has already scattered them.” “Precisely,” the rabbi answered. “And although you truly wish to correct the evil you have done, it is as impossible to repair the damage done by your words as it is to recover the feathers.” (Words that Hurt, Words that Heal, Rabbi Joseph Telushkin)

Many of us grew up at a time when the word “Retarded” or “Retard” was an acceptable descriptive word, not just applying to people but to situations and things. But we have learned not to use certain words to describe people of different races or religions, because those words are considered insults and slurs. The “R-Word” is also a slur, and an insult to a whole group of people who do not have the collective ability to fight back. I ask that you be mindful of your own speech and model that mindfulness for our children.

Sofia has Down syndrome. Sofia has developmental delays. But Sofia IS a child, who loves to play and sing and dance and learn. Just like everyone else!

Wednesday, July 13, 2011

An Update on the school situation

Wow, things have changed. A month ago, I was convinced there was no way Sofia was going to be able to attend day school. Well, to quote B.O.B. (from "Monsters vs. Aliens"), "Ladies and gentlemen, I may not have a brain, but I have an idea..."

And in all fairness, this is going to be one VERY well thought-out idea when it comes to fruition. There are a lot of smart people involved.

So the plan is that Sofia will attend public kindergarten. I have to sign her up for Breakfast Bunch, in order to be able to get the boys to school on time. But two days a week, Monday and Wednesday, I will pick her up early (some time around 12:30/12:45, to be determined), and bring her to MWJDS, where she will officially be part of the kindergarten class!

The Learning Specialist at MWJDS will be her dedicated aide. Not that she really needs an aide, but she definitely needs more than one grown-up in the classroom. And the good folks at MWJDS suffer from knowing Sofia a little too well as a younger-sibling-dragging-along-with-Mama. When she's with me, and I'm "working" on the various and sundry things I do at the school, she has free reign. She knows where the toys are. She knows what she wants to see. And she has no specific place to be.

This will be different. This is a new model. This is not full-time day school, but it is also not synagogue religious school. It's a special model of partial participation (I recently read a great blog post about partial participation).

It's a little scary. I'm experimenting, trail blazing, with my daughter's education. But it's kindergarten. If it doesn't work, we don't continue. No way of knowing until we try it.

A few things have happened in the past weeks:

- We have had some meetings with Sue Schweber, the queen of Jewish Day School Inclusion in this area.

- Sue and Hamorah Amy, the Learning Specialist, came to observe Sofia in her summer school classroom.

- I found out today that the woman who runs the summer school, who has known Sofia for these past three years, will be her kindergarten teacher!

- Hamorah Amy also came to our house for a "home visit". She and Sofia played a bit, although La Principessa was tired and cranky. We (the adults) also reviewed my "Life According to Sofia" document, where I am trying to list all the particulars of existing with/talking to/getting anything done around Sofia.

- The incoming kindergarten teacher at MWJDS is finishing her last course on special education with a project on Down syndrome.

- Sofia was "announced" to the rest of the kindy class yesterday. (I'm not thrilled with how that was done. I did not get to see the blurb until it went out to everyone - which was not the original intention, too many cooks... The blurb read:

We are excited to be welcoming Sofia Rothkopf to our incoming Kindergarten class. Supplementing her attendance at the public school kindergarten program in Ashland, Sofia will be spending Monday and Wednesday afternoons at MWJDS. Learning Specialist Amy B. will be in the room to assist Sofia at those times. Our goal is for Sofia to become part of the MWJDS community. Please join us in welcoming Sofia into our Metrowest family.

There are a couple of things wrong with that paragraph. One, while half the families already know Sofia and know how hard we have been working toward this, there are four new families, and at least two of them have never met me or my daughter. This tells them nothing about WHY Sofia will need this odd arrangement. Never mind my feelings as a parent; as a member of the recruitment committee, I worry about what conclusions people not in-the-know will jump to.

Also, and what really pissed me off: not only is Sofia already "part of the MWJDS community", but she has been so for longer than any other child in that class. She is the ONLY child ever to have her baby naming ceremony at MWJDS!!!


So I have the chance at two upcoming birthday parties (one we were already invited to, and the other, the mom immediately emailed me when this announcement came out) to introduce Sofia to the new families. Me. Not the school. So be it.

And both the new kindergarten teacher and the new head-of-school are planning letters to go out in August. Both of them will address Sofia's unique status.

What does all this mean for me, logistically? Well, some things never change. As I mentioned, I will have to sign her up for Breakfast Bunch in order to get her to school on time and then get the boys to school. But it still is in the works that at least two mornings per week I will then stay at MWJDS and be the Tefillah (prayer) teacher. Which is what I have wanted to do for a while now.

But it also means that salary vs. services is a wash. Not sure if money will actually exchange hands, or if they will just take what I would have been paid and hand it right over to the consultants and supplies and tuition for Sofia. Still to be determined.

Anyway, then Monday and Wednesday afternoons I will go back to Ashland, pick her up early, bring her to MWJDS, leave for 2 hours, and pick her up about 15 minutes before the boys get out. We'll start that way, so that Amy can do a specific hand-off to me. Amy has to leave at 3 to get her own daughter, and we are not sure how Sofia will handle the end-of-school pick-up mess. But the goal is for her to eventually stay to the end of school.

So. She gets all her services and supports and academics at the public school, then comes to MWJDS for two specific reasons: Judaics and community. Amy will have a specific curriculum of Judaics for Sofia, and will also work to reinforce whatever is being learned in the public school. The teachers at both schools will coordinate and communicate - we'll likely have a report notebook to take between schools, so we can know specifics about how that day has gone so far.

Nervous. But happy. And relieved.

She's a "wicked smart cookie", and I know she'll be able to do this. And I know that once they start working with her, the folks at MWJDS will worry a little less.

The interesting thing is this: in public school, everyone strives for "satisfactory". At the day school, we strive for "excellence". But for this, the good folks at MWJDS are going to have to be happy with "satisfactory" (in their eyes). Whilst I, meanwhile, will know that "satisfactory" in this case is still far superior to "nope, can't do it."


Of course, for all that, today Sofia was a demon. She had her first swim lesson of the season, new instructor, private lesson, and would NOT cooperate for the poor woman. Bu the end of the 30 minutes, Sofia was screaming at both me and the teacher. I was not pleased. We rested a while, and later went to gymnastics. I had to run some errands, and when I returned, all the other moms said "She's been looking for you". Immediately, she spotted me and ran out to hug me, and would not go back in.

So we came home, both grouchy, and she fell asleep on top of me in my comfy chair. I have since extracted myself, but eventually I have to move her upstairs and get her diaper on (or at least a big plastic sheet on the bed!).


Micah is mostly loving his new camp, which is terrific. Today he had some less positive interactions, but he was still relatively happy.

Basically, he's been in a terrific mood because his brother is away at camp, and last week David was in Israel again. So there's been a lot of Micah & Mommy time, which he totally loves.

He's delicious, really. So helpful with Sofia. So sweet to me. Such a little gentleman. He likes to help out with little kids. While Sofia is in gymnastics class, Micah usually plays with the younger siblings, who adore him. At the pool, he's a terrific helper for me and for other families. I'm very proud of him.


Meanwhile, Samuel is having an "awesome" time at camp, and he "got" a girlfriend! There have been a few pictures on the camp blog of him standing next to a skinny blond chick a head taller than him. That's probably her ;)


David went back to Israel on the 4th (oh yeah: excellent time in Maine for grown-up weekend. Then we drove down, picked up Micah and Sofia at my folks, and went to my friend's house in NJ. Sunday morning, wonderful time at a Bar Mitzvah for David's second-cousin's son, then more fun hanging out with my friend. She took him to the airport while I drove back to Massachusetts with the kids.)


I've been fighting migraines for the past few weeks. I do not like this weather. I just feel totally sloggy and exhausted and cranky, and that's when I don't have a headache...

I started working with two new Torah students. I will be officiating at our neighbor's Bar Mitzvah in March. The other kid is having her Bat Mitzvah the same day as my neices', in May, so someone else will officiate, but I'll be her tutor. And they have been in "school" (Jewish Family Workshop) together, so I'll start teaching them at the same time and then split them to focus on individual lessons.

I also have to figure out some plan for a third student, bar mitzvah the following year, but the family is not even involved with the Workshop. So I have to be creative.

It's a relief to have all these teaching gigs, since I don't have my High Holiday gig this year. I miss singing, but I guess I'll have to move on.

My graduate course is officially done, but now I have to read all their journals and papers. It's hard for me to not be overly critical of bad writing :(

Ok, it's 8:30 and she's not waking up. GOtta transfer La Principessa to her bed.

(Oh, and we have booked an apartment in Jerusalem for mid-August, but still no flight!)