Monday, October 29, 2012

Weathering the weather

Well, it's certainly an indoor sort of today! The kids are still in pajamas (it's nearly 2pm). I only got dressed because I still had my podiatrist appointment this morning (ganglion cyst on top of foot; I am SO glad it's finally gone!). I took David to the Logan Express bus at 4am, and he is now safely in Minneapolis, waiting for his conference (he's presenting on Wednesday).

So far we still have electricity, so everyting is charging, and Sofia is watching PBS.

Micah's a little freaked out by the trees waving over the family room (which has skylights on the ceiling), so he's back upstairs. I'm cozy in my big green chair. Even enjoyed some ice cream.

It was a busy week. Last week, after David took Sofia to the reading group (and I posted about friendship), David continued to pester me about everything the school is doing for Sofia. By late night we had a 2 page list of questions to ask. I did a lot of chatting with the teachers and specialists over the week. Madame Sofia is doing FABULOUS. Apparently she has completed the time-telling unit, and totally 'gets' it. She's reading so much, and her language is just exploding.

In Swimming and Ballet and Gymnastics, she is super-focused and doing great. Big change from only a few weeks ago. It's all just clicking for her.

And she does have TONS of friends, including a little boyfriend in Breakafast Bunch. Very cute.

So that Saturday afternoon, after the reading program, we ended up at Walden Pond with our friends. And on Sunday, we met more friends, this time a couple whose daughter also has that extra special chromosome. We hiked at the MA Audubon Society, Broadmoor in Natick. Beautiful day. Picniced and played until well past closing. The kids had a blast. But it was very interesting seeing Sofia and Miss K, who is only a year younger. K is super-verbal, but since she does not have older brothers who are part monkey, she's not nearly as physical as Sofia. And seeing the DS temper in stereo was certainly ...

The lovely views:
 Dads and Daughters:
 David and Sofia - that's supposed to be a smile:
 Girl Fight! (Notice how Sam just stands by and watches...)
 Fight continues, Mom K steps in, Sam steps away...
 But later, the girls got along, and Sofia tried to give K a lift.

 My children, and a tree.

 K gives Sofia the Heimlich? Or a lift up...
 Ah, a peaceful moment.

Saturday, October 20, 2012

Friendships: Is an extra chromosome required?

Ok, this is for my Soul-Sisters (and Brothers): Does your child with Down syndrome have other friends with DS? Not the “kid I see because our parents are friends” acquaintance. Real, solid friendships with peers with DS?

My husband takes Sofia to the Learning Program reading group once a month. Invariably he comes home depressed and upset. One of today’s issues was about friendship. With older kids/young adults, there are activities like AIM (Advocates In Motion) or Special Olympics where they can meet peers. With younger kids, do you force specific friendships based on the extra chromosome? Or do your family’s friendships come organically from your surroundings? For example, our social life as a family is based mostly on the day school and on the synagogue. Well, Sofia is the only child with DS in the day school, and the only person under age 25 with DS at the synagogue. In her public school, she is the only child with DS in the entire first grade (which also means she is the only first grader with DS in the entire town).

Elementary school is a time when children start to make their own friends, based on mutual interest, rather than on the parents’ friendships.  How does this play out for your child with DS?

Sofia has lots of “friends” at school. I took her in yesterday at lunch time, after she’d been out sick for a day and a half. When we walked in to the cafeteria, four full tables of children screamed “Sofia’s Here!” and practically mobbed her! It was very gratifying. But Sofia did not seem to respond to any one child in particular.  She has only one friend at school with whom she has play dates, the girl she has been pulled with for speech and academic support since they were in preschool. They play together, but I don’t get the sense that Sofia “loves” H in the way that “best friends” usually love each other. (H has learning differences that are similar to Sofia’s, but not T21). Rather, H’s mom and I are the ones who make the play dates; the girls don’t request them.

In the day school, Sofia loves and is loved by her classmates, but they do not have play dates as individuals. When we get together with families, Sofia and her peer may or may not play together. Frequently, Sofia is more likely to be engrossed in the toys at someone else’s house. If the other child wants to play with her, great, but if the other child moves on to another activity, Sofia is perfectly happy to just keep playing with toys.

If your elementary-school aged child has friends with DS, where do they connect? School? Or other activities? Which activities?

One of the reasons I do not do a lot of in-person DS events is Comparison. When Sofia was a baby, I had a lot of problems with other moms, whose kids were not developing at the same pace as Sofia, comparing the children and becoming upset. That distressed me, and I began to shy away from too many direct interactions with other kids the same age with DS. The few friends we have in person have children a year or two older or younger than Sofia (and most are boys), which makes it easier to ignore the developmental differences.

But David goes to this reading program once a month, and sees a bunch of kids with DS who are close to Sofia’s age, who are doing… “more” things… better than… UGH! All the words I hate to use! I hate to compare! So how do I help my husband cope with his need to compare? And is there a “right” answer?

Are we doing Sofia a disservice by not fostering more “peer” friendships at this age? By purposely doing “regular” activities as a family rather than specific Special Needs activities? Sofia is in the Inclusion class in the Public School, plus twice a week she is part of the first grade class at the day school. She attends gymnastics, swimming, and ballet/tap classes every week. Isn’t that enough? Or not even close?

And does “peer” have to mean specifically Down syndrome? There’s a girl from gymnastics who has Autism. She is two years older than Sofia, but they are a riot together (so much so that they had to be split into different classes, because they were too disruptive together). They love each other. In this relationship, Sofia is the leader; J will follow whatever she is doing (which is why they disrupt the class; if Sofia gets distracted, J follows her.). Is J a “valid” peer relationship?

Thursday, October 18, 2012

Blogging and more blogging

One of my tasks at school this year is to help the teachers make their own blogs. To this end, I have made my own "teacher" blog, MWJDS Tefillah Blog. It's been interesting to compare the different blogging platforms. When I first started blogging in 2007, Blogger was the clear winner, but now I'm not so sure. The features in WordPress are just as easy (albeit laid out differently).

Anyway, take a look at my Tefillah blog and tell me what you think. And notice the boys in the photo on the home page...


In other news, I'm home with a chunky-breathing Sofia today. We were up most of the night trying to keep her breathing. Poor baby. The quik test for strep was clear yesterday, but we'll see if it comes back tomorrow with a different story. No fever, just trouble breathing. We've been nebulizing and steaming frequently, and I dragged out the humidifiers already.

Saturday, October 13, 2012

Making a Blog Archive

I've been blogging since 2007, which I suddenly realize is a few years. And this blog is my only "journal" (well, for travel, I write the journal entries off-line first). So I decided it would be good to get a printed archive of my blog, just for safety, in case Blogger decided to close tomorrow.

I had experimented with one service already, but the book I created was more than 600 pages, and would cost a fortune to print. So I looked at a few other services, and I think I found something that will work for me.

I'm using BookSmart, which allows me to select which blog posts I want to include, and (in theory, at least) "slurps" the photos from those posts also. It doesn't always grab the photos, but I think that might be because many of the photos I post on the blog are actually stored in Photobucket, rather than directly on Blogger.

Anyway, I managed to finish the text for the 2007 archive. Pretty cool. I can import it into BookSmart, and then copy it into my word processing app (I use Mellel) and format it the way I like. I could go all the way to print with BookSmart, but the default is to put one entry per page, and there was a lot of wasted space. I wanted to make the text flow better.

It was interesting to see my posts from 2007. Sofia was just a toddler, and Micah a little kid with a lot of really weird Micah'isms. Very amusing to revisit "I'm going to pretend I'm Captain Jack Sparrow; do you want to be the dog?" and stories like the imaginary DVD player that was too loud...

We had a lovely Shabbat dinner last night with three other families, all very close friends. In fact, I think the 18 of us (including the kids) are all going to trek to the Florida panhandle for Passover this spring! We had a great time, good food, many bottles of wine for the grownups, and the kids watched The Parent Trap (the Lindsey Lohan version) and had fun with their friends. We didn't even get home until 11pm.

Which means Sofia and I woke at 8:30, just barely in time to get dressed, eat breakfast, and make it to her ballet class. She actually did REALLY well this morning, participating nearly the entire time. Very proud!

This afternoon we all went to "Pies on the Commons" in Framingham for a little while, and then met our friends at Walden Pond. The guys (my three and their two; the son is one of Micah's best buddies) walked all the way around the pond, but the mom and I were stuck walking with Sofia, which means that we made very little progress and finally turned back around. Sofia really just wanted to stay at the beach and throw stones into the water.

We went back to their house for dinner, and had another lovely evening. And got home earlier.

All are asleep now except me (it's 10:30). G'night!

Tuesday, October 9, 2012

Simchat Torah, Buddy Walk, and a Photo Book

Tonight was the big blow-out Simchat Torah celebration. Temple Israel does a great job, with a Klezmer band and lots of dancing. The crowd seemed larger than usual, possibly because it was a holiday weekend (Columbus Day) as well.

Sofia had a grand time. She danced so much, and I saw her hold hands with many different people, which is unusual for her. She was very happy. And she got to be on the bimah as much as she wanted!

Sam and his friends got to carry the Torahs as recent b'nai mitzvah students. Sam looked so handsome.

Micah had a blast with his buddies. He is such a happy guy these days.

David even had fun, talking with E & D and M & J, who are our good friends.


Yesterday was the Down Syndrome Buddy Walk, in Wakefield. It was fun. David wasn't home yet from New Zealand, so he missed it (didn't get home until after 10pm). But we had 15 people on the team anyway: me and the three kids, my friend N and her two, DB and his three, my parents, and Hamenahelet (the former head of school) and her grown son (who happens to have Down syndrome also).

I made bright orange kerchiefs for team Sofia's Fans, and with the Buddy Walk's jade t-shirts, they looked terrific.

I had to return the borrowed wheel chair on Wednesday, so we were back to the jogging stroller. And we did not find out until we got to Wakefield that both rear tires were flat! No one had a bike pump - we asked police, fire, EMT, and event organizers, as well as several random strangers. So Sofia had to settle for a bumpy ride - which at least encouraged her to walk a bit more of the route than usual.


And I spent a large portion of my free time in the past few days finally making the photo album from Sam's Bar Mitzvah. Here it is:

Click here to view this photo book larger
Click here to create your own Shutterfly photo book.

Saturday, October 6, 2012

Our Sheltered World

Hmmm. This Public School business is going to be ... different. I am used to my children's friends' parents being like me. Like-minded on things like food and behavior. Healthy food. Good, polite behavior.

And then there is public school. Now, many of the kids are great, and so far all the parents I have met have been fine. But so different from what I'm used to!

Sofia attended a party this afternoon. It was lovely, in the child's home. Themed for Halloween. There were various stations to play games, and after each game you could take a prize. There were buckets of candy and buckets of toys.

Many kids took one or two items each time. Ok.

But I watched as some of the kids dug in with both hands and practically shoveled the candy into their own buckets.

I was kind of appalled. And no one said a word.

I'm just so not used to the Candy. I hate candy. Micah is allergic to so much, and it's just so darn bad for us. I allow a little bit, so they don't feel deprived, but I don't keep a candy dish filled, and I don't encourage candy consumption. When the kids get home from trick-or-treating (if they even bother to go), I make them sort out the candy and only keep a small amount. (And I admit, a couple of times I froze the extras and handed them out the following year!).

The other thing that was weird for me was the football-worship. I'm just not used to it. Oh, my husband and sons like football. They will watch a game, especially if the Giants are playing. But we're not Sports Fans. We'd rather DO than Watch.

So I'm always boggled by the amount of time, money and energy the rest of the country seems to spend on football (or baseball).

Ok, done with my little mini-rant. I spent a few lovely hours in the Sukkah this afternoon, enjoying the last of the nice weather. (It's raining now). It's gonna rain tomorrow for the Buddy Walk. Boo Hoo.

My children are stressing me a bit more than usual. Sofia was not all that cooperative at dance class this morning. After I had to go in and get her back on track twice, one of the other moms told me I should just go sit down and relax and read my book, and she promised she would call me if I was needed. I SO appreciated that!

Thursday, October 4, 2012

31 for 21...sort of

October is Down Syndrome Awareness Month (it's also Awareness Month for a bunch of other things, but DS is what I'm interested in, of course).

Since Down syndrome is also known as Trisomy 21 (meaning there are 3 pieces of the 21st chromosome "pair"), many folks post "31 for 21" during the month of October; 31 posts about DS or their child with DS or their experiences with DS.

No way can I commit to posting every day for the entire month of October! There are days I actually do not go anywhere near my computer (really!). There are days when the only "downtime"I have to even think about composing something puty and witty is while I'm driving the darn minivan around town.

So I'll post what I can, under the guise of 31 for 21.

Here goes...

I have always known I would have a daughter like Sofia.


When I was 16, I traveled to Israel with United Synagogue Youth's Israel Pilgrimage. Six weeks without my folks or my sister (awesome!), traveling all over the country. Awesome.

One place we visited was Maon LaTinok, which was an orphanage for children with Down syndrome. At that time, in 1981, children with DS were not very well appreciated in Israel, and many were abandoned. So this woman named Hadassah Levi rescued 40 babies with Down syndrome from local hospitals and raised them herself at Maon LaTinok.

One of the most vivid memories I have of that summer when I was 16 was sitting on the floor, playing with an adorable little girl, less than two years old, with braids in her hair. Next to me sat one of the football players in our group, and he, too, was playing with a small child. It was the sweetest moment. And it made me fall completely in love.

Which is why I was not scared when Sofia was born.

And when I was ready to celebrate weaning her, after nearly 2 years of nursing, I planned to mark leaving that phase of my life behind by going to the mikveh (the ritual bath). As I searched for text for the ceremony, I came across another which the parents made a donation to none other than Maon Latinok!

So my 31 for 21 is this: I have always, since I was 16, known that I was supposed to have a child like Sofia. I just did not know how incredibly beautiful life with her would be!