A New Week

Friday was a little smoother, but not before I got in a fight with my mother. So that's been hanging over my head all weekend. But it is what it is.

Friday evening, instead of a real Shabbat dinner, I let me wonderful friends talk me into joining them at a local Chinese restaurant. There were 14 of us (yeah, David made it home from Israel in time!), so it would have been too crowded to pull off a last-minute Shabbat at home. It was fun, but LOUD, and crazy. Who told us to have all these kids?!

Sofia was wearing her new tutu, which I had bought that afternoon in preparation for the dance class she will hopefully be taking.


She wore it all evening into the restaurant, but fortunately I convinced her to change before dinner was served :)

Saturday morning we went to shul. I attempted to get Sofia to stay in one of the childrens' services. She just could not concentrate. First we went to the K-2 class, where one of her MWJDS classmates was. No go. She was too busy moving books around and ordering people to change their seats. So I took her to the preschool service, which she usually does ok at. No such luck. She would not pay attention, kept requesting the Gummy Bear song, and was too wild for the littler kids. I ended up with her and Micah out in the courtyard, throwing leaves down the storm drain.

It was interesting to see. I'm not sure if she's just wild now because she's getting used to Kindergarten schedule, and needs more down-time than she's getting. Or is this another major shift, a split between her and her peers?

That afternoon was Ashland Day, the town carnival/event. There are booths advertising all the local businesses, booths for all the school activities, and a bunch of bounce house type rides. Sofia had a grand time on one of the slides, going over and over and over again. But she could not concentrate on anything else. Many classmates and school friends came up to say hi to her, but she would generally not acknowledge them.

The nice thing about Ashland Day is that the boys can go off with their friends. Sam had three of his best buddies, who both go to the public school, so he took off immediately. It took Micah a little longer before he found his friend, but once J arrived, they took off together. We made the boys bring their own money, although I did buy lunch for Micah. Sam was completely independent, and very happy. Ah, cell phones!

Sam's friend came back to the house with us, and when his mom arrived, I invited them both to stay for dinner. She's a wonderful lady, and an old friend of mine, too (her kids attended the day school for a few years in the early grades). It was nice to get to see her again.

Sunday, David took Sofia to TWO birthday parties. It was a busy day! Again, Sofia had a lot of trouble concentrating on much, and was very easily distracted. I hope this is just a "getting used to the new year" thing.

I dropped Micah at J's house, and they went to MiniGolf with Kadima (the junior youth group from the synagogue). He had fun, despite having a massive allergy attack the night before (from pollen). Poor kid. If I could "fix" anything about any of my children, it would be Micah's allergies, no question.

Sam came with me as my helper to teach a tzitzit tying workshop at the Reform synagogue in Framingham. It went well, although much faster than the two and a half hours they had scheduled. I was glad to have Sam with me; he was a good helper. And his friend's cousin was in the class, so he knows her.

As soon as the class was done, I got a blinding migraine. Had to wait int he parking lot until I could drive! So home to nap under a dark blanket. David took Micah into Newton to pick up kosher Chinese food for dinner - yum. Lots of leftovers for tonight, too.

Taught three classes in half an hour this morning! Gotta figure out the schedule better. Of to pick up Miss Sofia for her transition from public to day school now.

Here's a slide show from the past couple of weeks:

That Didn't Go As Planned...

Well, today was an "epic fail". Thursday is supposed to be my day for myself. I had planned to get errands done in the morning, including a manicure/pedicure, then do a yoga class at noon and then meet up with a friend for a few hours.

Well, first I was awake 2am - 3:30 because of Miss Sofia again.

Got the kids to school, blew shofar at the day school (we blow shofar every morning for the month before Rosh Hashanah).

Drove off, thinking I would run a couple of errands before the nail place opened at 9.

And noticed that the Temperature gauge on my car was all the way to maximum H. :(

My air conditioner has been failing for the past several weeks, which I was mostly ignoring. Then I realized that it also controlled the defroster, which I could not ignore. Last week I'd done a price check at the place I usually go. I had planned to go tomorrow to another place near home.

Well, fortunately last night I'd spotted a coupon for an AC Recharge, and had it with me. So off I went to Direct Tire in Natick.

And waited a while, before realizing it would take another hour or so before they even knew what was going on.

Not wanting to miss out on my mani/pedi, I walked to a different place - Nails & Co. in Sherwood Plaza. Nice place, but pricier than Nails 2000 or Tokyo Nails.

At least I got my mani/pedi mostly done before Direct Tire called back.

Large hole in Radiator. Radiator - and associated hoses and things - needed to be replaced.

With the coupon, it all came to.... $1398.00. Yup. Unplanned expense.

AND... they needed the car until 4:30 pm.

Which meant I had to swap a carpool for the boys (thanks, M!). And figure out Sofia.

Fortunately, my friend who I'd planned to see came up anyway. We met at the mall, had lunch, shmeid around, then went to pick up Miss Sofia at school. Home, watched Shrek (and I fell asleep - second time I've fallen asleep on a playdate this week!).

When the boys got home, I got all three kids settled, and my friend drove me back to Natick to get my car. I LOVE that Sam is old enough that I can leave them all home for a quick errand! Still wouldn't leave them at night (speaking of which, can anyone babysit on Tuesday night next week?!). But for daytime, it's a big help.

Got the car, paid the money. At least now it's working (well, except I still need to get the transmission fluid changed - this is the third place that's told me to do that).

Home, to a MISERABLE 12 year old. He can't do his homework by himself, but id I don't do all the reading and writing for him, then he doesn't think I am helping him. And if I ask what he needs and he doesn't answer, and I start doing something else, like playing with Sofia or making dinner, then he gets angry. And he wanted to clean up the basement RIGHT NOW so he can move down there and get his own room, 'cause he's the ONLY one in his class (of 6) who has to share a bedroom.

Oh, woe is me. Get over it, kid!

Nope. MISERABLE. Culminating in his swearing at his brother, and then me taking his phone away. Indefinitely.

So, I would like to go to sleep now, and have an easy day tomorrow. OK?

Endless Day

I think it's Wednesday, right? But didn't Wednesday start 48 hours ago? Or more?

It's been a long, slow, busy week. Let's see....

Friday evening I took Sofia and Micah and his friend to dinner with the rest of friend's family. Little crazy - restaurant was too loud and every one in our party got a bit antsy. But it was still fun, and nice to see the parents (my friends) being really goofy and happy together.

David got back from the Berkshires around 11, having brought Sam to the bat mitzvah girls' house and had dinner there. He said all the girl cousins were "flipping their hair" at Sam!

Saturday morning, I took Micah to shul, but David took Sofia to the Learning Program, a special reading program for kids with Down syndrome. He really wants her to do it, so he gets to give up shul and take her...

Afternoon, my friend and her son came for a playdate with me and Micah. Evening, I finally got to ride in the new toy (David has a "company car"...the kind of car you get if you are already married to your "trophy wife". ) David and I went to Providence, to my favorite restuarant on Atwells Ave, Potenza (ok, the name changes every time we are there, but it's Chef Walter's place). It was lovely to be out with my hubby, on a gorgeous night. We had a really nice time.

Sunday I had to leave with the kids early to go get Sam. David stayed home, because he had to leave at noon for the airport. He's back in Israel for the week. I drove out to the Berkshires, got Sam, and took the kids to the Hancock Shaker Village. It was nice. Ice cream and a bite for lunch, before heading home.

Instead of going straight home, we went directly to Chabad for a Shofar Workshop. The boys got to make their own shofars! Very cool. I spent a lot of time bouncing between the boys and Sofia, who was eating dinner in the cafe. Fortunately, I knew a lot of people there, so I could leave her under someone else's watch for a few minutes at a time.

We were all so tired when we got home that night!

Monday was a "normal" school day - I went in to Sam's class and the kindergarten in the morning. Sam had tutoring after school, so I took the others for ice cream while we waited. In the evening, Micah had his first piano lesson, with a new teacher who comes to our house. YEAH!

Tuesday morning Sofia woke at about 4am, and wandered around for a while. I finally got her back to sleep at 5am. Today she woke at 2am for a while. I am SO tired now!

Yesterday was actually sort of easier. In the morning, I had to pull Micah out for a while to go for a skin checkup. Then I had to teach first and fifth grades - both went well. And I did not have to pick up the boys, they went with the carpool. So I was able to relax a little bit. Took the kids for sushi.

Today was just endless. Like I said, woke at 2am for a while with Sofia. I think it's a combination of her belly hurts (I gave Miralax this morning; hopefully tonight will be better) and just adjusting to a long school day. I have to blow shofar every morning at school right after drop-off. Then today I had to go get the invitations for my grandmother's 100th birthday party run off. Then worked out, and then came home and fell asleep for an hour! A few more errands, including stopping at the local ballet studio....

Hopefully Sofia will be doing a special needs dance class called Perpetual Motion on Tuesday afternoons. They need 5 kids to sign up in order to have the class. So spread the word!

Picked up Sofia, raced back to the day school. Today's session with Micah's class was better, because I was stricter (so was their teacher). Also made them all afraid. I'm trying to teach them the Torah service, and I said that at the next All School Tefillah they would have to lead it. They paid attention after that!

Then I went in to the kindergarten, to do a shofar workshop with them (including Sofia! although she was so tired, she spent most of my time rolling on the floor looking at a Barbie book). I brought three of our shofars in, and let each kid try to blow them. Thank heavens for alcohol wipes! It was fun.

Raced to shul, to make sure we actually have everything reserved properly for Sam's bar mitzvah. Apparently (as I'd discovered yesterday) we did not! So I'm a little nervous. It should be ok, but we have to find out about the tent I want to put in the courtyard, which is even more necessary now that there is an aufruf (blessings before a wedding) with an equally large family that same morning. So there will be just ghastly amounts of people!

Back to get Sofia, who left kindergarten early and sat quietly in the car with me waiting for the boys. Got Sam a buzz cut (his choice) and got Sofia's bangs trimmed. Got a snack for Micah, then dropped him at his gymnastics. Then off to Sofia's gym. Sam and I tried going to the post office, but the desk at Trolley Square closes at 4:31 - and the postman there is VERY nasty - and we got stuck in bad traffic trying to get to the office on Route 30. So I will mail the invitations tomorrow :(

Got Sofia, got Micah, got home. Did not realize both my bnai mitzvah students would be showing up, but that went well. They actually prefer to work together, which is good. Then dinner for the kids, bedtime for Sofia, dinner for me, clean up, and now it's 11:15. Good Night already!

Oh, but one more thing: At the beginning of the month, I was the featured interviewee in the Jewish Family Service of MetroWest's newsletter! Here is the interview

Francine Ferraro Rothkopf:
The Gift of Community
by Julie Wolf, JFN Newsletter Editor

Synagogue, school, and Internet -- all provide Francine Ferraro Rothkopf with a sense of community that sustains her. A longtime resident of the Metrowest area, she and her husband, David, live in Ashland with their three children, Samuel (12), Micah (almost 10), and Sofia (6 1/2), who has Trisomy 21, more commonly known as Down syndrome. In this interview, Francine talks about the value of community in her family's life.

Your maiden name is Ferraro -- not exactly a common Jewish name. Were you born Jewish, or are you a Jew by choice?

This is one of those weird family stories: I have a picture of my paternal grandparents on their first date. On the back is written "The Future Mr. & Mrs. Langer." It wasn't until they had dated for a full year that my grandmother found out Grandpa's last name was really Ferraro! Having grown up in the Garment District in New York, Grandpa spoke better Yiddish than most people, and could "pass" well enough for the times, and he'd really wanted to date her. Of course, once it was discovered that he was not actually Jewish, there was upheaval on both sides. ... My great-grandparents stopped being observant once my grandparents married, and it wasn't until my father explored his own intellectual curiosity of Judaism, and later married my mother, from a traditional Jewish home, that we brought Judaism back solidly into the family.

My parents were very committed to their involvement in our small synagogue in Bristol, Conn., and I think that is where I began to develop my obsession with community. But for sure, having a last name like "Ferraro" was always amusing, especially on synagogue and USY letterhead. ...

Your daughter, Sofia, was born with Trisomy 21, or Down syndrome. As the mother of a child with Trisomy 21, what have you found to be some of the misconceptions about the syndrome?

... Down syndrome affects people of all ages, races, and economic levels. Although a woman's chances of having a child with DS increase after age 35, more live births of children with DS are to younger women, because older women are more likely to have prenatal testing, and more likely to abort. Approximately 92 percent of prenatal diagnoses of Down syndrome are aborted.

That last sentence gets to the heart of problem. OB/GYNs still present a diagnosis of Down syndrome as a terrible tragedy, and are not always quick to provide accurate, up-to-date information. The diagnosis is no longer terrible. I acknowledge that, had I been born with that extra chromosome back in the mid-1960s, I probably would have been put in an institution. But the world Sofia and her peers face is so vastly different. With preventative medical treatments (children with DS faced increased risk of cardiac issues, childhood leukemia, thyroid problems, hearing or vision loss, skeletal problems, and a few other issues), people with Down syndrome are able to live healthier, longer lives. With the developmental and academic supports, such as those provided by Early Intervention and Special Education services, they are able to accomplish amazing things. Early support (EI showed up in our home when Sofia was only three weeks old!) is key. Think about how much a typical baby grows and learns in the first few years; children with the developmental delays associated with the extra chromosome need extra help to achieve those milestones. ...

The world of Special Needs Mommies on the Internet is bursting with love and support and cheer. I have friends now from all over the world; on our recent trip to Israel we were able to visit with friends there. I hear about the struggles friends go through in other states and realize we are very lucky to live in Massachusetts, where both the medical care and the education are available. My "DS Mommies," both near and far, are a terrific resource for parenting Sofia.

This year Sofia is starting full-day kindergarten in Ashland, but she'll also be attending the MetroWest Jewish Day School. What were some of the special arrangements that went into enrolling Sofia at MWJDS?

I am SO excited about this! I have been involved with MWJDS from the very, very beginning, so I always knew I wanted all my children to go there. When I got my prenatal diagnosis for Sofia, I was very clear: Sofia would be attending the school when she was old enough. We had the incredible luck to have Carolyn Keller as head of school, because aside from her tremendous commitment to the school and Jewish education in general, she also has a grown son with Down syndrome. She knew firsthand what it was like to send two children to day school but have to send one to public school.

Sofia attended preschool in the Ashland public school system -- children with learning disabilities are entitled to a free public education beginning at age 3 (per IDEA, the Individuals with Disabilities Education Act). The folks in Ashland have always been aware of how much we wanted Sofia to go to MWJDS, but also of how much we want to make sure she gets all the services and supports she needs. And they have been terrific collaborators.

The idea for "partial participation" did not crystallize until this past June. Although everyone at MWJDS was committed to having Sofia become a student there, we also needed to make sure that what we did was really in Sofia's best interest. If we had to bring in all our own therapists and specialists (Sofia needs speech, occupational, and physical therapy several times per week, in addition to learning supports), the cost would be astronomical. Were I to schlep her back and forth between schools all day, she'd never have time to learn anything (and I'd be a wreck!).

So ... we developed a special curriculum [at MWJDS] for her, following the kindergarten's Judaic studies. ... [Attending two afternoons a week], she will be a full member of the kindergarten class. ... While it is too early to predict how things will develop, we are confident that this first step will be a positive one for Sofia, our school, and our community. The folks in the public school have been fantastic advocates. We are so very blessed by the whole project.

A few years back, you contributed to a book called Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. You wrote about "The Gift of Community." What inspired you most?

... My essay is about how the folks in our community and family embraced us when we announced Sofia's diagnosis prenatally. Our wonderful friends from Temple Israel threw us a "baby seder" before Sofia was born, and people from the shul and the day school cooked us so many meals once she arrived, I think it was three months before I had to cook again! We felt so loved and protected within our community, and we were -- and still are -- so grateful for how everyone has taken part in raising Sofia.

A candid question: Do your sons ever feel that Sofia overshadows them or takes more of your time and energy than they would like?

This was my parents' big worry when we told them Sofia would have Down syndrome: "How will this affect the boys?" But kids who grow up with a sibling with special needs have more of a chance to develop qualities such as patience, kindness, supportiveness, acceptance of differences, compassion, helpfulness, empathy, dependability, and loyalty. That seemed like a pretty good "gift" to give them!

To read more about Francine and her family's recent trip to Israel, or to learn about resources geared toward families with children with special needs, visit her blog at http://fbfrothkopf.blogspot.com/.

End of the Week

Yeah, we made it through the week. It was a little rough, and a lot of wet!

Let's see... the pool party on Monday was lovely fun, except Sam and A got into a terrible fight. So we have decided the families need to take a break (we can still have grown-up time!). We will keep the two kids apart as much as we can, given that they are two/thirds of their entire class!

Tuesday, I "worked" in the morning, going to tefillah (morning services) with Micah's class. Micah was the leader. Unfortunately, Micah also did not feel good at all. A few hours later, I pulled him out to go to the pediatrician. Turns out he had an ear infection. AND his thyroid was enlarged, so then I had to take him over to the hospital lab (our peds does not do blood work). Still waiting for results, which is frustrating.

Raced back to school in time to teach the 5th grade - they ROCKED, which was cool. Then back to pick up Sofia, then back to get the boys (which was insane, 'cause even picking Sofia up a few minutes early, I was very late for the boys).

We have since worked out the pickups. My friend J will pick up the boys on Tuesday, so I don't have to race, and on other days I will pick her up 20 minutes earlier. Whew.


Sofia LOVES Kindergarten! (In both schools). She even loves Breakfast Bunch. Every time I say "Kindergarten", she says "Happy". It's wonderful. And she transitioned between the two schools very very easily.

Sam hit his head on the ground at the pool on Monday (he was trying to balance between two chairs. Then he hit is head during recess on Wednesday. Then he hit his head during gym today! UGH. Massive headache, poor kid, but so far he's ok.

Wednesday was crazy. I had a dentist appointment, then race to get Sofia and bring her to the day school. Drop her and race to Micah's class for my 1:00 session with them. Micah's class was ...uh...more as I had expected them to be (DIFFICULT!) this time.

After school Wednesday (so nice to have all three kids in one place!), we drove Sam home, because he had a ton of homework, then back up to Framingham. First dropped Micah at his gymnastics place, then took Sofia to hers. Both have 4:30 - 5:30 classes. Places are 10 minutes apart... After class, picked them up, home, quick dinner, and bar mitzvah student.

Today I took my boys and my "Friday Child" (extra kid, regular Friday carpool) home, plus Micah's friend A (another A, I know...). We walked up to pick Sofia up at school - it's finally lovely out again. The kids played, and then David came home.

Now David and Sam are on their way (in David's new toy) to Western Mass, to drop Sam off at a camp friend's house. He's going to a Bat Mitzvah in Pittsfield tomorrow. So I have Micah and his friend, plus Sofia; we are meeting friend's family for dinner in a little while.

Have to go play Monopoly now...

First Week done, one more start tomorrow

Wow. The first day at MWJDS was great. We all gathered in the front parking lot (the building has undergone a town-of-Framingham makeover, and we currently have no field and no playground, although playground is "on order"). Sofa was not supposed to attend in the morning, but as soon as she saw her friends in line, she joined the group. I walked in with the kindergarten class, helping out another kid.

Miss Sofia walked in the line, went to the girls' bathroom with her friends, and got back in line, walked to the classroom, found her name and put it in the right place on the board, found her desk, and worked on the first project - all without help!!! I was so proud of her!

I did pull her out after that, and we stopped in to the parent meeting in the cafeteria, where she distributed (or redistributed) car tags around the room.

Then we headed over to the public school.

Oy.

What a difference. I'm going to have to get over it. The day school encourages a warm, nurturing, welcoming environment. Public school...strives for satisfactory and standard. "We'll wait for the last family to arrive" (in silence). Poor Sofia had to be dragged in to the school. I went early, so I could go speak to the Early Care (Breakfast Bunch) ladies...although the people who were there were the After Care staff, not Breakfast bunch.

Sofia was not happy to be in school, and it was very disoriented - she is in the exact same hallway as she has been for the past three and a half years for preschool, but all the preschool folk are gone (moved to a different building) and the kindergarten has moved in.

And they join the first and second grades, sharing all the resources, including cafeteria and playground.

Kindergarten: Mrs. P's class has their snack FIRST THING IN THE MORNING (apparently because some kids don't eat breakfast...however, Sofia will have had breakfast at home AND at Breakfast Bunch by the time she gets to class.). Lunch is at 11:30. Playground break - for KINDERGARTEN - is 2:20. Dismissal is 3:10. There are 18 kids in this Inclusion classroom, and two adults. TWO adults. 18 kids. Sofia is NOT the most difficult kid.

She gets some free play time right after lunch. I'll pick her up on Mondays and Wednesdays right after that, to go to the day school. On the other three days, the assistant teacher actually leaves early, so Mrs. P is expected to handle dismissal for all 18 kids alone. So I will pick Sofia up at 3:00, which gives me just enough time to get to the day school by 3:15(ish) to get the boys.

I have to remember that it will be OK. Not fabulous. Not spectacular. Not excellent. OK. And OK in Massachusetts is still WAY BETTER than OK in many other places.

Ok.

So after kindy visit at the public school, we had a quick picnic, and then Sofia did go back to the day school and join the class for a few hours. Loved it. I was of course late for the first pickup, but she did great (but I apologize publicly to her teachers!).

Oh, and it's going to be a fine line between the relative lack of attention she'll get in the public school versus the one-on-one aide at the day school. I have to make sure we do not coddle her too much at the day school. She CAN do everything, she just needs a little guidance.

While Sofia went to kindergarten in the afternoon, I got to teach my first class! And it was Micah's class, which is the most difficult, because it's combined 3/4 grades and has a huge variety of...personalities... But I did it. Whew! And Micah was relatively well behaved.

Both boys have been really tired all week, getting back into the rhythm of school. They also are having a lot of allergy problems (this is one of the only seasons that really bothers Sam). And with the barometer being up and down, I've had a few migraines and a lot of muscle/joint problems this week. Not feeling great.

Friday night, we had Nicki and the kids and another couple from shul (who had been without power most of the week). (Oh, Friday morning, Sofia went back to MWJDS for another hour). Lovely evening. Saturday, shul, then relaxing at home (I had a migraine, so napped, while Sofia dumped all the DVD boxes...on top of me...).

yesterday we went up to the Butterfly Place in Westford. Nifty. Lots of gorgeous butterflies. But Sofia was racing through, and I spent most of the time telling her not to touch and not to blow on them! And the boys were less-than-impressed. They are in a very unenthusiastic mood recently. Not fun to be with.

Afternoon, I insisted we go to the pool for one last time. Our neighbors were there too, so the boys played with their kids, and the grownups got to talk while watching Sofia jump in over and over again. The water was very cold! But she kept going. It was nice.

Today we are off to a friend's house in the afternoon for pool party and BBQ. Kindergarten for real tomorrow, and I think I'll start teaching...

Happy Labor Day.