Thursday, May 19, 2011

Oh yeah, my daughter has Down syndrome...

I'd almost forgotten. Thanks for the reminder.

The night I got my amnio results, telling us Sofia would have an extra chromosome, I wrote her a letter. I wasn't worried about very much at all. In fact, I was only worried about two things: her health, and her Jewish education.

We are very lucky to live here and now. Massachusetts does a great job of providing services for Special Needs. Health care (not talking money, just actual care) is better than it has ever been.

And we have been lucky that Sofia really does not have any major medical issues. Her cardiac issues are minor and have never required treatment. She is monitored for Thyroid issues, but even that will be easily controlled once her levels get too high. She has the same vision as the rest of the family - nearsighted - but nothing astronomical. Hearing is excellent.

The public schools in our town are very good, and have done a great job in preschool of providing her with the support she needs. I know the elementary schools are also good.

Which brings us to her Judaic studies. Or lack thereof.

Obviously, if you know me or read me, you know that Judaism is very very very important to me and to our family. Jewish education, especially. I took Meah right after we were married, and all through my pregnancy with Sam, and through his first year. I continued...and continued... and continued. This is the first year since Fall of 1999 that I have not taken any classes. (And instead, I'll be teaching a class this summer!).

When my Meah classmate, Renee Finn, announced that she wanted to start a day school in MetroWest, I jumped right in. I was on the start-up board. I couldn't wait for my children to attend.

I have been so incredibly happy with the education Samuel and Micah have received. The Judaics are excellent, and the rest of the academics are fabulous.

So I have really really really been looking forward to having Sofia join her brothers and get the same excellent education, in both academics and in Judaism, that they have been getting.


It's May 19. Since we've known since she was born...or at least since she had her naming ceremony at two months old AT THE SCHOOL... that we wanted her to go there, I've been somewhat anxious to figure out how that is going to work.

Anxious. There's an understatement. Who is going to teach her? Who is going to drive her? Where will she get her special services? How will this all get paid for? Who will coordinate everything?


This afternoon, we FINALLY have a meeting between MWJDS and Gateways, the Jewish Special Education organization in Boston. Finally. Because we've known for the past two years that we would really need to be working with them, but everyone has been dragging their feet.

So now it's May. Late May. There are less than 20 days left of school this year. Sofia is 6 years old. She will be going to Kindergarten in the Fall.


When I look at the summary and associated costs that I JUST NOW received from Gateways, I just want to cry. "So, you mean it's really not feasible for a child with Down syndrome to go to day school? You couldn't have told me this...oh...6 years ago?"

(Actually, 6 years ago, I attended an event for the Jewish Special Education Collaborative, Gateways' predecessor, with baby Sofia in my arms, and was entirely heartened to know that one day she could go to day school. In fact, the principal at another school [too far away for us] said she was ready that year to accept a child with DS, to put a visible face on their Special Needs programs.)

I may be jumping the gun. We might still be able to make this work. But the proposal I just received talks about charging the family nearly $18,000 per year for services. And that's not including the tuition (which, by the way, is less than $18!).

So what do I do? Let Sofia go, and pull Micah out? Just say screw it, she's got Down syndrome, it's not like she needs to learn anything about her religion anyway?

(I'm not thrilled with either of those options, by the way.)

IF we make this work, great.

If we don't, what do I do? How do I continue to stay so over-involved and devoted to the school? And how the heck do I get Sofia a religious education? (For the record, I do NOT like our synagogue's religious school - there are some personal issues between me and the director, and our family just does not FIT there.)

This could all still work out. I will go in with an open and positive mind to this afternoon's meeting.

But MAN, it's like a slap in the face sometimes.

Monday, May 16, 2011

"Why?" "How?" "'Dat?"

When Sam turned two, he started asking Why. Why? Why? Why everything. Non-stop. Still his favorite question.

When Micah was willing to ask questions (come time a little after 2), it was "How?". He did not vare Why - he wanted to know HOW things worked, HOW things happened.

We;;, Sofia doesn't care about Why OR How. Sofia is concerned with "Dat?" As in "Who's that?" "What's That?"

She is Nosy Nellie when it comes to "Dat?" I can't talk ont he phone without her asking "Dat?" She's gotta know. "Dat" is also her way of asking the names of things. "What's That Called?"

Just an interesting observation.

So anyway, Thursday's event was EXCELLENT. People were really really happy with it, it ran smoothly, everyone had fun, and I got all my stuff to work. Last minute editing of a video by the teachers (VERY funny - "When The Cat's Away" a look at what happens when CK is not there - things like "10:00 Math Class - Today's Lesson: Poker!").

I was a little embarrassed. I don't mind being thanked, individually. I like it when people who need to know, know that I have done my job well. But the Mistress of Ceremonies made a point of having me stand up and talking about my work for the event, which also meant that people were coming up to me all night and thanking or congratualting me. Which was oddly uncomfortable for me. Guess I'm not used to praise!

This weekend, Sofia had two birthday parties to attend. She had so much fun! Here she is at the first party - all the kids got crowns:

And here were my three kids when we went to dinner on Mother's Day - note Micah's attitude (he got better after he ate):

And finally, the view of my kids in the car back and forth to CT last weekend:

Wednesday, May 11, 2011

A Better Week

Yeah. Last week was tough. I couldn't sleep most nights, which then meant naps every day, which promoted the cycle of not sleeping at night. And the weather did NOT help. Between allergies and migraines - UGH!


Thursday night was Science Fair, also known as my least favorite event of the school year. After the fair, nearly EVERYONE went out for a fundraiser at Papa Gino's. Very loud, but they all had fun.

Friday night I brought dinner over to Nicki's house, for me and my kids, Nicki and her kids, and Peter's father. We actually had a nice time, and it was a pleasure to be able to laugh with them. Life has to go on.

Saturday, I drove down to CT for cousin Heather's birthday party. My three kids all sat in the back seat, watching a movie on my laptop. They were very very cute. But it was a brutally long ride, three and a half hours (with a couple of stops). Friday's dinner had spilled a bit on the car rug, so we had to stop and get some rug cleaner (a minivan stinking of poached fish on a warm day is NOT fun!), and then of course Micah and I were allergic to the rug cleaner.

Anyway, had a nice time at Heather's house, despite the wind and occasional rain. I took a little rest in my car for a while. The kids had fun, and it was nice to see David's parents and sister, too.

Meanwhile, David was supposed to be flying home from Israel. However, Thursday the Tel Aviv airport was closed (due to some tainted fuel), so everything was delayed. His plane had to stop in Cyprus to refuel, and then again in Halifax. So he did not get to Toronto until after 10pm, missing the Boston flight until morning.

Since I was so exhausted, and he wasn't coming home that night, we drove up to my parents' house to sleep over. Took back roads, very pretty ride. And it was nice to see the West side of Bristol for a change. I also warned the boys that if they repeated the miserable behavior they had exhibited when we were there for Passover weekend, they would be walking home. They were complete angels.

Left my folks around 10am, and got home just after David. Spent several hours helping Sam make a model of Bucharest's Choral Synagogue for his Hebrew project. It came out really good. We are much better at creative projects than science projects!

We went for an early Mother's Day dinner, and were home by 6:30. Then I had to go back out again for a music rehearsal - we have an adult choir singing at the event this Thursday.

What event? Oh, the event to honor our out-going Head of School, Carolyn Keller. I (of course) am on the committee, responsible for all the creative aspects: designed the invitation, did the program, made a video, and putting together a surprise (CK, if by some chance you are reading this, PLEASE STOP NOW - SPOILERS!)


It is amazing how last-minute everyone really is. The pages were "due" April 29. I already know from phone calls and emails that I will still be collecting pages tomorrow.

So yesterday morning we did a sound check, and then I went to Nicki's house to have lunch and help her get her bills organized. Got her set up with my favorite utility - 1Password - and got the company to help her out with the license. Always pays to ask for help!

I had a checkup yesterday - turns out I have gotten TALLER! I had a sitter pick up Micah and take him to a make-up gymnastics class, and Sam got a ride home (although I had to pick him up at the high school auditorium, where they were having T's dance school dress rehearsal. Sam was soooo embarrassed to be stuck in the room with all these girls!). Picked up Sofia, met Micah and the sitter half-way to Tae Kwan Do, and off we went.

After TKD, stopped at Trader Joes to get some kosher meat - Micah and I were craving steak, but they only had "stew meat". Micah picked out a whole bunch of possible lunch entrees - he is a very picky eater, but is hungry at the end of school, so we need to figure out what else to pack. Sofia insisted on joining us in "Jerry Joe's" while Sam stayed in the car. While we were in the store, "Dancing Queen" was played on the speakers. Sofia knows all the words!

So this morning, after we dropped off the boys, Sofia and I were rocking out to the soundtrack from Mamma Mia (while I drank my latte from a Take-n-Toss sippy cup!).

Anyway, the boys and I didn't eat dinner last night until after 8pm, but it was awesome. Stew meat, browned in oil and garlic. Added spinach, garlic chives, red wine, a chopped tomato, and some water, salt and pepper. Boil first, then cook off some liquid. YUM! Combined with mashed sweet potatoes, and edamame. (Sofia had "hummus & chips" for dinner, and was asleep before we ate).

Yes, even when David is "home", he frequently misses meals with us. Monday at least he came home for dinner, but then went back to the office until after 10pm. Last night he got together with a dear friend, which was good. He always has fun with this guy. Hopefully we'll get to see him tonight. Then he's off to Tampa tomorrow morning ;(

So I'm going back to Nicki's house tomorrow morning, then setting up for the event (it's being held at one of the local synagogues). I have a sitter staying home with Sofia, so at least I won't have to chase her around, and Micah will get a ride from gymnastics.


Monday, May 2, 2011

I don't even know what to say

(Well, I guess I do, I'm a blogger...)

Our dear friend, Peter Azoff, passed away suddenly, unexpectedly, and tragically on Tuesday. He was 48 years old.

Peter's wife Nicki is one of my best friends. Their son Max is one of Sam's best friends - the two boys go to summer camp together. Their daughter Gavi is a little less than a year older than Micah, and Sofia gets all Gavi's hand-me-downs. And Peter and David were good friends.

And their family has been through so much already. Peter's mother passed away a year ago. Nicki's brother passed away two years ago, and her father, three years ago. And they lost a baby at birth.

This has been a very very very hard week. We heard the news Tuesday night, as David and I were plunging into post-Passover transition mode. I'm still walking around boxes in my kitchen.

I was at their house all day Wednesday and most of Thursday. We have a "shiva crew" of close friends, and we are all getting way too skilled at running shiva in Nicki's house. ENOUGH!

The service was Friday. It took a long time (Jewish funerals are usually within 24 hours of death) because of the autopsy. Sam came with us to the service, but Micah did not want to go. David was a pallbearer and gave one of the eulogies; I sang the memorial prayer. Sam was a trooper. It was good for Max (and for Nicki's nephew Kevin) to have him there.

So I was at the house most of the weekend. It was very sad. Everyone is saying "How could I have missed it?", so the rabbi did address the facts during the memorial service. Mental Illness is terrible, and can be so completely hidden away.

They only sat shiva through Sunday. Now comes the really hard part, continuing on with their lives.

They are surrounded by loving family and a loving community. We must must must continue to care for them as the weeks and months go by.

Baruch Dayan HaEmet - Blessed is the True Judge.