Wednesday, March 24, 2010

Well, that was fun

Tonight, I was privileged to speak to a group of donors for the day school. The "Chai Society" (Chai being the Hebrew word for 18, and 18 being the number that means luck) is the group of heavy-hitters who support the school. They were gathered to hear Rabbi Art Green speak about his new book, "Radical Judaism" (and we all got copies - I've got my light reading for Florida!).

But I got to be the parent speaker. And that was really cool. So here's my speech:

וַיַּרְא אֱלֹהִים אֶת-כָּל-אֲשֶׁר עָשָׂה, וְהִנֵּה-טוֹב מְאֹד

God saw everything that He had made, and behold, it was very good.

This line from the first chapter of Genesis tells us, clearly, that everything is good. Every difference, everything out of the ordinary, every “dis”ability. 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.”

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 started as a community school, expanding slowly throughout the MetroWest area until now, when we have students from as close as down the street and as far as Worcester. We include families with a varying degree of Jewish practice in the home. As our school grows, the richness of our community expands.

Many of you know me, and that means you know my children. Ten year old Samuel is proud to be the oldest boy at MetroWest Jewish Day School this year. He was also one of the first children at the school to be diagnosed with a learning disability. In first grade, we discovered that Samuel has dyslexia. I am proud to say that he has received his reading services from MWJDS every year, and now, in fifth grade, he is thriving and growing and making great strides in his reading. He also loves to learn Torah and Jewish studies, along with Social Sciences and even math and science.

Many day schools would have rejected Samuel. They would have said “We simply cannot accommodate a child who does not learn in the way that we teach.” And that is wrong, and very sad. And very much against our tradition. 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. And all students should have the opportunity to learn Torah, not just “normal” learners. My middle child, Micah, is in the second grade now. Micah’s learning style is quite different from that of his brother. In fact, this year, Micah was able to win a medal at his first chess tournament! He, like his brother, is thriving in the nurturing environment of MWJDS.

While I am extremely grateful to Hamenahelet and everyone at MWJDS for all the support Samuel has received and all the opportunities Micah has had, I have an even greater challenge coming down the line. In September of 2011, my daughter Sofia will be ready to start kindergarten. And we want her to attend MWJDS with her brothers. But Sofia has Down syndrome, and she will need more support than most other students. She will need Speech Therapy. She will need Occupational Therapy. And she will need teachers who are able to teach to her particular learning style, patiently and clearly, until she is able to master the subjects just like her classmates.

There are many children with Special Needs, different learning needs, in our community. And our texts have been clear since the very beginning: Every child should be valued, every child should be taught. We just need to make it happen.

I had been asked only this morning to speak, but fortunately, I've been buried in these texts all week as I try to finish the first real draft of my Capstone project before Passover. My plan is to get a draft to my adviser and several other key wise folk by Friday, so they have a little "light reading" over the holiday, and then I can work on their edits and suggestions when real-life resumes.

Meanwhile, I've spent every morning (when not driving or going to the gym) cramming my thoughts into the paper. Biblical and Rabbinic Texts Pertaining to Educating People with Special Needs. Hmmmmm.

Elsewhere in our lives, we are getting ready for Passover in an unusual way this year. We are going to Florida!!!! (Ok, stalkers, I swear there will be many people, including the local police, watching my house!)

Anyway, yes, going to G-d's Waiting Room. David's parents just finished cleaning up his grandmother's apartment in Hallendale, since she can no longer travel, so we have a place to stay, and we'll have seders with my friend B and her family (her sons also go to day school, so all the kids have the week off), we'll see my grandma, and we'll go to Disney on Easter Sunday (when hopefully the crowds will be lighter). And we'll get some warmer weather and some relaxation. And I'll start working on the yearbook...

Most exciting news of today, though, is that Micah finally got his glasses!

Sunday, March 21, 2010

Happy World Down Syndrome Day!


3/21 - signifying the third (extra) piece on the 21 pair of chromosomes. Trisomy 21 is the technical name for Down syndrome.

My friend Rebecca created these beautiful logos and a slide show:

Sunday, March 14, 2010

Sunday night

I've been upstairs with the younger two, listening to David "help" Samuel with his Torah homework...for the past HOUR. Poor Sam. David is really pushing him, but they are having a good conversation about the two portions (every week, Sam has to do a Summary and Commentary on two Torah portions. By the end of the school year, they will have each completed their own "Torah". Very cool project.)


The nice weather continued I think until Thursday. I got work done on my thesis, and finally managed to get my training session at the gym, the one where they tell you how to properly use each piece of equipment.

Also got another cold on Thursday. My nose has been horribly stuffed since then. Ugh. This is getting really silly.

Friday, I had my Masters Seminar again. Interesting. Most of the other students have not even started writing, and I'm at 54 pages already. We spent the class time editing each other's titles and Abstracts.

Had friends over for dinner Friday, nice time. But I also had an allergic reaction to something...maybe the wine... and had to take a Benadryl, so I practically passed out right after they left.

Slept late Saturday. There was a private lunch after shul, and it's really hard to explain those to Sofia. She just assumes that after services, we all eat. So we didn't go.

In the afternoon, we all got in the car and drove out to the Berkshires. Took Route 2, which is more of a back road. Very pretty, even in the rain. I also got to take a long nap (more Benadryl). Met up with David's parents (and Lilie) at the house, and then went out to dinner. It was snowing out there, up on the mountain. Really pretty, although dark and slippery too. Had a nice evening. Piling the 4 kids into the restaurant, along with my inlaws, made us look like The Circus. Very lively, indeed.

Today, David took the kids to a science event at the day school while I got to go to a birthday brunch for my friend RG. Fun time. Came home, picked up Micah and took him shoe shopping, then picked up Sam and his classmate from a birthday party. More shoe shopping, picked up take-out Chinese food, dropped off classmate, and finally home.

Micah's been having a rough time. He's very very smart, but emotionally immature and very sensitive. It's been a rough few days, as he gets into fights with me or David or Sam and then, after he calms down, gets mad at himself. Poor kid. I wish I could help him more. He is very good at things, but as soon as an activity gets too difficult, like piano or Tae Kwan Do, he wants to quit. At the last chess tournament, he kept saying he lost because he "just didn't want to try very hard."

My nose is still horribly stuffy. Sam's singing in the shower. Micah put Sofia to sleep (I tried 3 times, but she kept coming back out of her room).

Ok, time for David to catch up on LOST episodes. G'night y'all.

Tuesday, March 9, 2010

Pretty Day

Finally, nice weather has arrived. It's been above 50 for several days now (down into the 20s at night, though). Really a welcome change.

Today, Sam's class had a Publishing Party first thing this morning. Sam wrote about Nurses, of all things. It was interesting. He did a good job. His friend had a very funny piece about "judging a book by its cover", which I think I should put in the Yearbook. They are a talented class.

After the Publishing Party, we had a meeting with the Principal to discuss plans for the Upper Grades. Sam's class will be the first to reach 6th grade next year (the school only started in 2003), so we really are the pioneers.

I kept Sofia out of school today, both because of all the stuff at the day school, and because she was very stuffy-nosed again. She fell asleep yesterday at 4:30, and slept through the night (except for coming into my bed at 11:30, and then moving all night!). I think she might have a problem with sleep apnea. I need to get her into the clinic at Children's Hospital to have that evaluated.

But since it was a nice day, after we finally left the day school at 10 am, we went to a playground, and stayed for a few hours. She had a blast. Her friend from gymnastics showed up, too, and that was cute to see them calling to each other. It was fun to just hang at the playground and chat with other moms. Three other girls named Sofia, too!

Sitter arrived 2:30 and I went to get Sam. Micah had a play date with his buddy, so Sam and I did some research on his Egypt project. He's making an ancient Egpytian boat. Had to find "art straw"; we ended up with a big straw "flower" arrangement that we'll cut.

Tae Kwan Do, and then Friendly's for dinner. SSSSSLLLLLOOOOOWWWW service today!

Ok, LOST tonight!

Oh, here's how Micah went to shul last Friday night for the dinner:

Sunday, March 7, 2010

Made it through the weekend

Well, I'm pleased to say that the Zithromax seems to have worked. Micah's fine, and Sam's improving. He's still got a cough, but it's not nearly as bad as it was. He went back to school on Thursday and Friday.

Thursday night I got to go to dinner with my friend K, which was nice, but we were both exhausted and went home early.

Friday was the usual business. I took Micah to school, grabbed some groceries, then raced back to pick up Sam from the public school and get him up to school. Worked on my capstone project at this nice coffee shop in town until it was time to get Sofia.

After we got the boys from school, all three kids got haircuts, and then home. We got ready for Shabbat Across America, a big dinner at shul. However, Sam totally barfed (all over the floor, right NEXT to the toilet) right before we left. But he felt better after that; I think he just needed to get something out!

Ok, so off to shul. Micah was in A MOOD. Had a knit hat and dark sunglasses, and a major attitude. Sofia had no interest in sitting still for services. And David was stuck deep inside the row, so he couldn't go chase Micah.

(We are watching "Back to the Future" right now, and my husband can recite EVERY line...he's scaring me a bit).

Anyway, dinner at shul ended up being nice. Sofia actually went up to the caterer and said "Want Ice Pop Please"! She's been doing really well with want-____-please phrases.

Got home late, and we slept in on Saturday. I got up to feed the kids, but napped on the couch. We finally got up and out after noon. David and the kids went to his office and I went to the gym (which is in the same building complex). Then I hung out with them in the office...for hours....

Saturday evening we took the kids out to dinner, and then my friend D and I went to a thingy for one of the moms from school. Hard to explain. Sort of a birthday party/empowering event. But I had nice conversations with some friends.

Today was busy. David and Micah had to leave early for a chess tournament, which turned out to take about 6 hours and a lot of frustration. I took Sam and Sofia shopping, then home, then to shul, 'cause I had to sing in the choir for the Hazzanapalooza concert. It was a little crazy, trying to practice while hoping Sam was watching Sofia.

But I had such a fun time singing (and I somehow ended up stage-managing the choir into position; I learned from the best, the guy who stage manages The Zamir Chorale). I really like to sing. I really really like to sing!

David arrived about 25 minutes after the concert started, grabbed the kids, and took Sam to his friend's birthday party at the arcade. I raced over as soon as the concert was done. Had some nice talks with friends.

Take-out sushi tonight, and the kids are all asleep. We'll be asleep as soon as the movie is over!

Wednesday, March 3, 2010

Change of Pace

(Ok, enough of this sickness. Sam has an ear infection, and I convinced the pediatrician to put BOTH boys on Zithromax. Let's hope this is the end of this stupid bug.)

I received this email recently, and wanted to share:

Recently, in a large city in Argentina, a poster featuring a young, thin and tan woman appeared in the window of a gym. It said, "This summer, do you want to be a mermaid or a whale?"

A middle-aged woman, whose physical characteristics did not match those of the woman on the poster, responded publicly to the question posed by the gym.

To Whom It May Concern,
Whales are always surrounded by friends (dolphins, sea lions, curious humans.)
They have an active sex life, get pregnant and have adorable baby whales.
They have a wonderful time with dolphins stuffing themselves with shrimp.
They play and swim in the seas,seeing wonderful places like Patagonia, the Bering Sea
and the coral reefs of Polynesia.
Whales are wonderful singers and have even recorded CDs.
They are incredible creatures and virtually have no predators other than humans.
They are loved, protected and admired by almost everyone in the world.

Mermaids don't exist.
If they did exist, they would be lining up outside the offices of Argentinean psychoanalysts due to identity crisis. Fish or human?
They don't have a sex life because they kill men who get close to them, not to mention how could they have sex? Just look at them ... where is IT?
Therefore, they don't have kids either.
Not to mention, who wants to get close to a girl who smells like a fish store?

The choice is perfectly clear to me:
I want to be a whale.

P..S. We are in an age when media puts into our heads the idea that only skinny people are beautiful, but I prefer to enjoy an ice cream with my kids, a good dinner with a man who makes me shiver, and a piece of chocolate with my friends.
With time, we gain weight because we accumulate so much information and wisdom in our heads that when there is no more room, it distributes out to the rest of our bodies...
So we aren't heavy, we are enormously cultured, educated and happy.

Beginning today, when I look at my butt in the mirror I will think, "Good grief, look how smart I am!"

Tuesday, March 2, 2010

I'm so tired of this!

We made it trhough the weekend, but just barely. Sofia was really out of it all day Friday, and we just had a quiet evening Friday night. Micah was feeling better, and Sam was a little better, but not perfect.

Saturday we took it easy. David took the boys out for a while, and Sofia and I rested. She didn't throw up again, although she was still definitely not feeling well.

In the evening, I had to read Megillah for Purim. David stayed home with Sofia while I took the boys to shul. Evening was ok.

But got home, and David started throwing up.

I had to go back to shul to read on Sunday morning. Since David was flat-out, I took Sofia with me (the boys could stay home and watch TV and not bother daddy). Poor Sofia was still not feeling well, and while I was reading, I had to hold her. She was clutching me and sobbing the whole time. Complained that her ears hurt.

Got her home, managed to get her to sleep with dada, and I took the boys back to shul for the Purim Carnival. They had a good time. Micah and his buddies pool their tickets, Sam and his classmates pooled their reward points. And they all sent each other to "jail" repeatedly.

Got home after 2pm, and Sofia and David were still sleeping. When she finally woke up, she was definitely better, although still stuffy and tugging her ear. But finally eating, and bouncier.

Had to help Sam with his homework Sunday night, which was a bit of a challenge, since he had a freak-out about how much work he had. But we got it done.

Monday morning, they ALL went to school. Whew. David and I had an appointment, and then I called the pediatrician about Sofia's ears. So I had to pick her up early from preschool and bring her in. Switched her meds from amoxicillin to azithromycin, and I have to keep putting wax-removal drops in her ears, which are totally blocked.

Ok. Back to the boys' school, where Sam was in the Hebrew Purim play, as a guard. I could tell he wasn't feeling great, but every time I've been into the pediatrician's office for Sofia, I've asked abotu Sam, and there's nothing they can do.

So we had an easy afternoon yesterday. This morning, however, all three of them were in our bed when we woke up. And all three were hacking like crazy. I took them on a "field trip" to the bathroom, where we steamed up the shower, and I brought the nebulizer in and passed around a saline neb to all three kids. It was a bit surreal.

Off to school, all three. And I FINALLY went to the gym! (Tried to go yesterday morning, but couldn't find my gym pants when I got there...) Sofia is finally doing much much better. And the temp was above 40 all day, so I had all the windows open in the house, and Sofia and I spent some tie outside, fixing the mailbox and walking around.

Babysitter arrived, and I went to get the boys. Poor Sam was totally drained when I got to school. Micah was bouncing off the walls. I let him play, made Sam walk around a bit, and then Sam had his therapy appointment. Took Micah to the Christmas Tree Shop to waste time. Picked up Sam, and off to Tae Kwan Do (we missed two weeks).

Sam did make it through class, but could not manage dodge ball, which he usually loves. He was about ready to fall asleep as soon as we got in the car.

Usually I take the boys out to dinner on Tuesdays, but since Sam was so beat, we just stopped at Trader Joe's and got a variety of Indian and Italian items we could make at home. Yummy food.

But when we got home, I took Sam's temp. 101.5.


Babysitter is coming at 8am tomorrow, to stay with Sam and take Sofia to preschool (David's in Michigan). I have Whimsical Wednesday program (preschool program at the day school). Then I'll have sitter meet me with Sam at the pediatrician...

I am SO VERY TIRED of this!

And I feel really bad, because there have been a whole bunch of advocacy things that have come up recently that I have totally not been able to participate in. Some of our on-line friends have entries in the National Down Syndrome Congress's More Alike Than Different poster contest. Yesterday there was a Stroller-In at the State House to protest the proposed cuts to Early Intervention.

I just want my family to be HEALTHY already.

I did manage to work a little on my thesis this weekend, though (once with the laptop on my lapp and Sofia cuddled up next to me on the chair). It's going to be too long. I have A LOT of material!