Monday, July 14, 2014

DS Convention, and Inspiration Porn

Sofia and I attended the National Down Syndrome Congress convention this past weekend, in Indianapolis. It was a nice to get away with my beautiful daughter (even though she was in a crabby mood some of the time). It was nice to see on-line friends in person. It was nice to see other 9 year old girls with Down syndrome exhibit many of the exact same behaviors as Miss Sofia. It was nice to learn some tricks and tips about managing challenging behaviors or how to teach her about puberty.

There were a few less-nice things, though.

1. Sofia is just not all that social. This one took me a bit by surprise.  But only a bit. On Friday, we went to lunch with friends. We had seen Amy and her daughter Emma this past summer, and I had been talking to Sofia about how excited we were. Emma was also excited to see Sofia. And we have not seen Michelle and her daughter Kayla since the Boston convention 5 years ago.

Sofia was not "into" seeing friends. We got together for a photo:
And you can see that Sofia was not going to cooperate.

She fared a little better with Kayla's brother, Lucas (who is really cute and difficult to ignore):
So we walked to lunch, on a hot day, on the wide, flat sidewalks of Indianapolis (it sort of reminded me of Washington DC). Sofia kept stopping, and eventually I had to carry her (making a mental note to ALWAYS bring the wheelchair!). She and Lucas did stop to pick dandelions (he was very sweet, handing her flowers).

We made it to our restaurant, which was very crowded, so we decided to order take-out and have a picnic (there was a nice park with tables out back). While we were waiting for the food, Sofia cooled off on the floor while Emma and Kayla chatted:

But it was nice to eat lunch with friends (and at least she did stay at the kids' table for a while):

The kids ran around while the adults finished up, and then we got a group photo:
Left-to-Right: Kayla, Emma, Amy P, Michelle, Lucas, me, Peggy, Cason, and Miss Grumpy-Pants

So much for that. She did perk up a bit after lunch, and we stopped into the Exhibit Hall to play a spot of tennis:
Mostly, however, she just wanted to check out the race cars. This being Indianapolis, there were several cool cars sitting around:

She did ok at Kids Camp, although she discarded her eyeglasses (fortunately, they had them at the check-in table), and she was hiding behind a curtain, watching traffic on the street when I came to get her.

The hotel was all-glass, and our room was on the 31st floor, with stunning views:

 What Sofia really preferred to do, of course, was stay in the room, watch TV and play with her hair/makeup toys.

Friday night she and I walked (ok, I wheeled, she rode) to dinner. David had suggested a restaurant but it was really expensive (he had been there, but for work, so he hadn't paid). Sofia and I settled for The Old Spaghetti Factory, which we'd gone to in Vancouver. Very simple, with gluten-free options, and yummy drink for mommy, and $30 including tip.

We came back, changed, and tried to go to the Dance. We got to the convention floor, walked in the door of the dance. Walked directly through the crowd to the other side of the room. Briefly got to see Amy and Emma. And then went to bed. (Ok, got Mommy a drink first). Sigh.

Of course, she woke up at 6:30 am every single morning. Despite the black-out curtains. First stop was the pool, which she had all to herself on Saturday. Then we got dressed and left the hotel to go for a walk.

Outside the first stop, we met up with another mom who was walking with her 12 year old son and a friend's 9 year old son. The 9 year old was tired and Sofia was peppy, so we gave him a ride. But when it came picture time, Sofia again would not join in:

And so we eventually said goodbye (and retrieved our wheelchair).
Sofia likes to be alone:

We walked to the Zoo, which would have been better if it wasn't 98% humidity. We did not stay too long. Walked back, and Mommy had a melt-down finding lunch, until we finally went back to the room and I called in a take-out order from the lobby restaurant.

2. Inspiration Porn and Militant Inclusion: While I was waiting for Sofia to finish lunch, I watched this excellent TedTalk by Stella Young. In it, she talks about Inspiration Porn. Porn is when you objectify another person so that you can feel good. She discusses the phrase "The only disability is a bad attitude" and points out that no amount of positive thinking is going to turn that staircase into a ramp or make closed caption magically appear on the TV.

So after Sofia finished lunch, I checked her into the Kids Camp again and I went to the General Session. First there was a militant Inclusion lady. (I'm not Militant Inclusion, especially when it comes to education. Sofia did really poorly in an Inclusion Class with 20 kids, a dozen of whom had their own learning differences. She does great in the Sub-Separate classroom; she still is attached to the Inclusion class for Art, Music, Gym and lunch, but gets her learning in small group or one-on-one, which works perfectly for her.)

So I was already kind of uncomfortable. Then, after the Inclusion lady, they showed an "Inspiring" video about a fellow with DS who is some sort of assistant coach for a football team. And, honest to gosh, someone in the video actually said, "The only disability is a bad attitude"!

As I was leaving, the football player who came on-stage to introduce the speaker started quoting John (from the New Testament), so I knew I was done. (And I did not feel particularly Included!).

3. Puberty is Gonna Happen: Ok, this session (how to explain and manage puberty to girls with DS) was worth the trip. I sat with Michelle and we took lots of notes about this terrifying topic. It figures, our kids are delayed in EVERYTHING... except Puberty.

When the session ended, I picked up Sofia (who had a better time in Camp this time), and we went up to the Concierge Lounge on our floor for hummus and chips and some wine for mama. We went back to the room to relax before dinner. And then we went down to the banquet.

4. You can't get a kosher meal in Indiana. When I signed up for the Conference, I had to pay a Conference Fee, fees for each session of Kids Camp, a fee for the Compendium (which I got in electronic form), and fees for each meal at the Saturday Evening Awards Banquet. When signing up for the banquet, there were many options: Adult, Child, Vegetarian, Gluten Free, Kosher. Yes, Kosher, for Adult and for Child. So I signed up.

We got into the banquet about 7:10, and it was already full. We waited with a nice family from Long Island and a mother and two kids from New Mexico until they could open another table for us (there were several Reserved tables that were still empty). We put our meal tickets on the table. We told the wait staff what our meal orders were (the LI family had ordered some vegetarian meals). And we waited.

I must have told the waitress 7 times "KOSHER meals". At 8:00, she took the tickets off the table and brought them into the kitchen, then came back and said "They are going to make those now." At 7:15, the manager came over and said "we've run out of kosher meals. The chef wants to know if he can make you a kosher-style meal." NO.

So we ended up with vegetarian, and since I didn't trust that they had also made Sofia's gluten free, I got the kids' meal of pasta (I could not tell if it was GF or not) and she got the adult meal of veggies and beans. But it was already 8:30 and she was ready for bed.

So we left, before the dance even began. Sigh.

But I am glad I went. Glad to meet new friends and see old friends. And glad to be home :)

Monday, June 16, 2014

To Break, To Train, or To Guide

I started this reflection a few weeks ago, and finally have some time to get back to it...

My daughter is strong willed. Very strong willed. She has Down syndrome, and people with that extra 21st chromosome are often known for their stubbornness. But Sofia takes it to new heights. A family history of OCD (my side), inflexibility (dad’s side) and all-out strong personality (both sides) have given her extra strength.

She also has a habit of totally ignoring people. Unfortunately, this often extends to her father or my mother or my sister. When these supposed-to-be authority figures tell her to do (or not do) something, she is more likely to completely ignore them than to obey.

I’m mom. I’m with her more than anyone else, and I know how to get her to do things. I know how to be patient, because she’s not going to just jump up and comply. She has to go through her own rituals in order to get out of the bathtub, or turn off the TV, or clean up her toys. She has her own unique, individual style. And I know when to pick my battles, when to turn on the stern voice, when to cajole, when to let her know I’m getting angry, when to let her know it’s a safety issue.

As you may imagine, this causes some tension in the family.

My mother tells me “You have to BREAK her of this!” as if Sofia is a horse. “You have to let her know who’s in charge.” While I may joke that Sofia knows that she is in charge, I really do not think this is a valid argument.

In fact, whenever I’m told I have to “BREAK” my daughter, I just want to scream, “WHY? She’s already perfect! Why would I want to break her?”

“We’ve lost the opportunity to train her,” my husband complains.

Train her? Like a dog?

What I want for my daughter is channel her energy. Get her to understand that things go in a specific order. “First do your homework. Then climb the rock wall.” Help her see that it really IS time to get out of the bath. Even if she is angry about it. She has every right to BE angry, but being angry doesn’t get her out of doing things.

All three of my children are Unique. Special. Individual.

I never want to “Break” them. I want to help them learn how to use their own unique and individual styles to move through the world. Help them learn how to communicate their needs. How to advocate for themselves. How to navigate social interactions. How to BE.
Not so much to ask, huh?


Ok, in other news, since I have not updated this thing in ages:

It’s nearly the end of the school year! Micah is actually finished with 7th grade; the last day of school was Friday and they are on a field trip today. He made such giant strides once we moved him from 6th grade to 7th grade mid-year. He really completed all the work, and brought his level of quality, especially his writing, way up. He’s a kid who rises to a challenge.

He had a great time participating in “Shrek The Musical” with the Framingham Performing Arts Center (PAC). He’s VERY popular with girls. He has an official girlfriend, but is frequently surrounded by other girls, especially on the Bar Mitzvah circuit. I probably should change his name to Valentino...

I’m going to miss him when he goes to camp this summer, but I know he’ll love it. And we were thrilled to find out this weekend that one of his bunk counselors is a kid from our shul, so he’ll have someone he knows right there with him.

Sam is nearly done with freshman year of high school. He’s in Exam Week now, and has completed two out of four exams. He’s looking forward to spending the entire summer at camp (Micah’s only going first session), and then wants to return to camp the day after he gets home so he can do the entire week of USY encampment also. Not sure about that.

He’s made his way in high school. David and I still have to constantly remind ourselves that Sam is an Introvert and we are Extroverts and That’s Ok. It’s tough! But Sam did love playing on the Ultimate Frisbee team for school, and made friends with a handful of other kids, too (including the son of one of David’s college friends!).

Miss Sofia is about to finish second grade. This is a big transition time for her. Last Thursday was her very last day as a student at MWJDS. There’s no way her split schedule would work with the rigors of third grade (especially since the Judaics become more text-based and she’s just a beginning reader). So now I have to figure out what to do about her Jewish education. I’m trying to figure out how to convince Gateways to do a satellite program in Metrowest, since I cannot bring her to Newton every week. If they don’t do it, I guess it’ll be up to me. Fortunately, I know lots of good people out here who could be involved.

She’s also moving up to a different school next year (Ashland groups all students K-1-2, then 3-4-5, then middle school, then high school, into different campuses). I think I’m more nervous about the transition than she is. She’s been at the Warren School for 6.5 years, since she turned 3, because the preschool was there, too. It’s going to be interesting.

She started taking the special needs Van to and from school a few days each week. Next year she’ll take it home, and take it to school only on the days when I don’t work at MWJDS (which might mean one day a week).

I’m going to be the Marking Associate next year at MWJDS. Cool. I really love working there!

Oh, AND I’m going to be one of the Gala Honorees! December 14. Cool!

David has been traveling less, but still off and on. He’s trying to be more involved in the kids’ lives, which is good. We are looking forward to spending time together this summer, especially since the boys will both be away ;)

Trying to start planning Micah’s Bar Mitzvah, and getting the front porch expanded, and might need a new refrigerator, since ours is leaking (David tried to fix it, but it’s still leaking). And I need another tire on my crappy minivan - tires should really last more than a year, right?

Enjoying the sunshine today.

Monday, May 26, 2014

Micah's "Save the Date" card

Micah Save the Date
View the entire collection of cards.

Monday, May 19, 2014

Pollen Tsunami

Yes, it's finally Spring in the Northeast, which means No One Can Breathe!

Between myself, Micah and Sofia, we've gone through so much Benadryl, Zyrtec and Claritin, it's just not funny. Add to that a couple of nasty viruses that are also floating around, and my extreme talent for getting an ear infection and/or sinus infection any time I get too stuffy.... well, it's just not been fun.

But in other topics:

The final Consecration experience was lovely. Sofia did fine. She sat in my lap a bit, and in her seat most of the time. She shouted out "Shabbat" at the correct moment. And she offered her opinion when the Rabbi read the kids a story. IT was sweet.

 I also took her to the model Matzah Factory before Passover, and she had lots of fun:

 The public school 2nd graders presented their MultiCultural Night, and Sofia's class did a dance from Italy. La Principessas was front-and-center! She did great with all the dances.


Passover was fun. The first night was a bit dysfunctional, but still fun - an odd mix of people, so two very different styles. Second night was great. David finally offered to run the seder, so Laura and I could concentrate on the food! Only took 15 years!

Oh, and an hour before the first seder, I managed to completely slice my finger, through the nail. I even passed out from the pain (it hit the nerve). Wow. I guess my Passover knives are a lot sharper than my every day knives. My finger is healing, slowly. The wound is closed up, and the broken part of the nail has finally fallen off, anot not really any pain now. Just waiting for it to grow back.

Lilie stayed with us for the first week of Passover. It was a miracle: Sofia actually stayed in her own bed all night, because Lilie was with her. (Of course, Lilie came to snuggle with me around 3am each morning...)

Over April vacation, Sofia attended bike camp through the I Can Shine organization. Every morning we drove up to Arlington, and she circled the middle school gym, flanked by her volunteers. Biggest problem is that she does not want to go fast, which you need to do to balance on two wheels. But she worked hard.

Meanwhile, Micah and the 7th graders went to NYC for three days right after Passover. He had a BLAST! He's doing so well in 7th grade. He's so happy. And he's loving being in the play ("Shrek the Musical" through the Framingham Performing Arts Center). Making friends and enjoying himself.

It's Ultimate Frisbee season, so Sam's keeping busy. David was home most of April, but now is back to traveling. Just weekdays, though. He's making a real effort to be home on weekends.

I'm jamming to get the MWJDS yearbook done this week, and finish making my Dragon Wings for Shrek. (That's my contribution to the play). And keeping everyone minimally healthy. Or well-benadryled.

Wednesday, April 9, 2014

First do homework, then climb the walls

It's one of those "mommy" phrases you never expect to hear yourself saying. And yet you say it. And it works!

Sofia gets homework packets from the sub-sep teacher each week. And each week, Sofia and I argue about doing her homework. At the end of each week, I stack yet another un-touched homework packet on the counter.

The problem is that Home is for rest and relaxation. She is completely uninterested in doing more school work when she is home. And if she is uninterested, she is simply NOT going to do it.

So I decided we needed to find an out-of-the-house place that would be The Homework Place.

Well, Tuesday afternoons, Micah meets with the Cantor for Bar Mitzvah lesson ('cause of course he did not want to work with me!). And now that Sam has Ultimate Frisbee practice every afternoon, I couldn't just leave Sofia home with him. So she comes with me.

Of course, she still did not want to do her homework. What she wanted to do was this:
Our synagogue has a lot of decoratively uneven brick walls, especially in the lobby and behind the sanctuary. They are so inviting for my spider-monkey children!

And thus, I uttered those immortal words: "First finish your homework, then you can climb the walls."

She was SO happy. And when she finished, Micah showed her how it's done:


In other news, we had a WILDLY successful end to the Consecration drama. I was so upset after that first rehearsal, and I decided that it really just was not fair to make her do it. So I did not bring her to the Sunday rehearsal, and I sent an email to the Rabbi, Cantor, and the parents who were organizing.

Wedensday afternoon, a few hours before the last rehearsal, I got a call from one of the moms. It was the BEST phone call I've ever gotten about my daughter.

"Sofia has to participate! She should do just as much as she wants to, and then she can sit down wherever she wants to. She has to be there, she still gets her siddur and certificate."

(I had not known the children were all getting their prayerbooks, including the day school kids. No one ever mentioned that to me.)

So I brought her to rehearsal again after swimming. In the car, I told her she should try, and if she wanted to sit, she could. She told me she would "Just Sit, Listening Ears, Be Quiet."

Well, when we arrived, the kids were practicing, and she RAN straight to her place in line (between two friends), and she stayed up for the entire time they went through the prayers. She even answered when she was supposed to say her name and what she was thankful for (I came behind her to cue her). Then she sat down and watched the rest of the program, quietly.

I was SO proud of her!

She did slightly less better the morning of the event, but she was still fabulous. That girl just knocks me out!


Wednesday, March 19, 2014

321 A Day In The Life

Friday, March 21, is World Down Syndrome Day. I'm ambivalent about "celebrating" it. As a few other moms have said, I want Sofia to be appreciated as An Individual, not just as a person with an extra chromosome. Not because of the DS. Just because of her. We jump through hoops trying to break down stereotypes: "Oh, all people with Down syndrome are just so sweet." "They are all so friendly." "Such happy, special people."

Uh, no. Happy, not always. Friendly, only when she feels like it. Sweet, not when she's screaming at her brother because she's "ANGRY YOU!"

But as part of a 3-21 A Day In The Life Blog Hop by, here's my Day In The Life of Sofia:

Somewhere between 12:30 am and 3:30 am: there is a bump, followed by the sound of Sofia's door being opened. Shuffle, shuffle, shuffle. And suddenly there is a 62lb child climbing into my bed. Which is just barely ok when my husband is traveling, and mostly horrible when he's home.

If David is home, the next several hours are punctuated by his moaning and complaining while Sofia does her best to kick him in every rib and sensitive area she can reach, in the hopes that he'll just get up and move. He says some nights he brings her back to her room several times. I'm a deep sleeper. If I do manage to wake up, I bring her to her room, and have to stay with her until she's so deeply asleep that she won't hear me get up and leave; usually I'm asleep way before that point.

6am: my alarm goes off to wake up Sam so he can catch the school bus for the high school. Hopefully he remembers to wake me up before he leaves. If he can find me; I'm either in Sofia's room, or buried under her, since she likes to use me as a pillow whenever possible.

I get up, shower, and then have to get Sofia and Micah ready for school. Micah wakes up fine. Sofia often has to be dragged out of bed these days. Especially if it's my bed. (I don't get it. She has the newer, more comfortable mattress. I'd totally choose her room over mine!). Then comes the routine: get dressed, brush hair, find glasses. We go downstairs and I make her a pack of instant Grits (every single day of the year - except Passover - no matter where in the world we are); she makes sure I don't forget to add the butter. After the grits, usually there's bowl of cereal. Meanwhile, I make breakfast for myself and lunch for both kids.

Finally, get shoes and socks and coat, grab backpacks. Get to the car. Wait for Micah to get to the car, because there's usually something he forgot to get or to do...

Off we go, racing backwards down our very steep driveway in my minivan. Thrill Ride for the Day.

Sofia's school this year is just around the corner, and in the early morning, we are even allowed to drive in using the bus path in the back. Park, and walk her in to Extended Day Program. Pick up her coat and backpack along the way, since she takes them off and drops them in the hallway the instant she gets into the building. Report to the EDP teacher about how many helpings of breakfast she's had; sometimes she's still hungry.

Sofia is in the Sub-Separate classroom this year. She's attached to an Inclusion classroom, so I don't really know what the schedule looks like each day. Sometimes she's with the Inclusion class, mostly for Art, Music, PE and Lunch, and mostly she's in SubSep.

Mondays and Thursdays, I pick her up before lunch, and take her over to the Jewish Day School, where she joins the 2nd grade class. The other three days, I pick her up at the end of the day, a few minutes before the rest of the school gets out; the SubSep kids are dismissed from the front door, since many are on the special van bus, while the rest of the kids are dismissed from the side door.

Afternoons are a mixed bag. Mondays, she stays in Aftercare at the day school, although sometimes she escapes and finds me in my office. Then we leave and race over to her gymnastics class. Tuesday she goes home. Wednesday and Thursday she has swimming; I take her Wednesday (she won't let me into the dressing room to help her get into the swimsuit anymore!), and the babysitter picks her up from aftercare at the day school on Thursday. Friday she did have dance class, but we just quit; she hated Tap and would not cooperate.

Then we drive whichever boy needs to be driven somewhere, and then go home. She watches a movie (usually on Netflix - Tinkerbell or Barbie are the current favorites) while I make dinner. There are "beauty" toys (hair and makeup) spread out all over the floor, and most of the time she brushes her Rapunzel doll's hair while watching her movies. More watching after dinner (unless David is home and says "no TV").

Maybe a bath (she showers after swimming, so not on those nights), brush teeth, pajamas, and bed. If it's not too late, I try to make her read a book to me, or I read to her. Mostly she likes to look at the pictures and argue with me.

She's very independent these days, and sometimes kicks me out of her room, but just as often insists that I stay. I try to leave before she falls asleep.

What's missing from this schedule?


Any kind of playdates.

Any getting together with Friends.

Ever. (Ok, not EVER. In the late spring and early autumn, we spend more time outside, and her friend from across the street might stop by on the way from walking their dog, and the two girls will play together for about 20 minutes. It has not been warm enough to do that in many months.)

It kind of sucks.

I don't mean to be depressing. Usually I'm completely in awe of and enthralled by La Principessa.

But sometimes I wish ....

Ugh. I can't believe I even said that to myself.

I wish she was more "normal." But I don't, really. I just wish she had playdates. I wish she got to be included more. I wish she was invited to some birthday parties from the public school (and I very much appreciate that she is invited to all the parties from the day school). I wish other kids HER AGE (or grade, really, since she's 9 already) would engage her in conversation.

It was very sweet today. This past weekend, at the Purim festivities at shul, Sofia made a new friend, also named Sofia. Also in 2nd grade, although a few years younger (and much taller!) than my daughter. Well, this afternoon, we went to shul (to practice for Consecration; it went horribly, since Sofia was totally uninterested in participating), and the new Sofia held out her arms to give my daughter a huge hug. THAT was wonderful.

I wish more kids would do that. Her day school friends often do; not all of them, but some of them. The rest just treat her like any other kid, which is great. But she's only there 4 hours a week. The rest of the time, I don't get to see her with friends.

I'm just grumpy. I hear her upstairs as I type this. She's watching something, and laughing hysterically (and adorably). She's "really very happy" - right now.

Monday, February 24, 2014

February Vacation - Guadaloupe!

I am relaxed.


Like the "can we just cement this feeling into my body" type of relaxed I have not felt in a long time.

A week doing nothing more than following Sofia from pool to shore to restaurant, occasionally talking to the boys and David, and reading and sleeping, is apparently really good for me.

We left on Friday afternoon, right after school, for Logan Airport. Flight to Miami.

I hate Miami Airport. It's huge, it's badly marked, people are not nice, and it's overcrowded. And poorly planned. And slow.

But eventually we made it to the hotel for the first night, and then back to the same airport in the morning for our flight to Guadeloupe, in the Caribbean.

Sofia spent most of the flights watching movies on my Color Nook (the one that was Grandma's), because her movie player died after about 20 minutes. Time to get a new one. Bummer. But at least I'd thought ahead and put some of her movies on the Nook, along with my own stuff.

She also went to the restroom about 6 times, vaulting off each and every row of seats on the way down and back each time.

Otherwise, the flights were fine. Micah sat next to Sofia on the first flight, which was helpful. Sam sat there the second flight, which was not helpful.

Arrived in Pointe-à-Pitre International Airport, and found the Club Med staff. And we were off for a week at Club Med La Caravalle.

It was a lovely week. We had two connecting rooms, so the three kids each had their own bed (pull-out for Micah), and in theory David and I had our own room (although Sofia shared our bathroom, and came in for cuddles each morning).

We didn't do much beyond swim and eat. I tried putting Sofia into the Mini Club one morning so I could go windsurfing (which I did, and loved), but she was not at all happy in the club, so that was the end of that. I had to take her to activities instead. 

She tried the Trapeze (Club Med has a Circus School) - the first time, they carried her up the ladder and got her onto the bar and swinging before she even realized it, but the second time, she got a death-grip on the safety rope, and they ended up carrying her back down the ladder instead.

Micah got to do the trapeze once, and enjoyed it.

Sam did archery every afternoon, and had a lot of fun. He also tried windsurfing with me, and liked it.

David relaxed, too.

It was also Sofia's birthday on Tuesday, and they brought her a cake at dinner.

So here are some random photos covering the week:

Sofia taking a selfie


Sofia stops to take some photos of a tree-top while David watches
 Me and my love

More sunset

Swimming with my little fishie

Sam and one of the friends he made dug a huge hole on the beach
 Birthday Princess (I made the crown using the wrapping paper from the book I'd brought along for her)

Sofia getting carried up the ladder for the trapeze
 but not cooperating...

 Micah did it, though.

 Sam the archer

 Friday night award ceremony, Sofia latched on to the GO in the suit. She followed him around like he was her prom date.

 Me and my girl

 My loves

 Snacking in the lounge - she loved the tuna

 The photographers were excellent, and WICKED EXPENSIVE! I was only able to buy 7 photos (for 112Euros, which is a small fortune). Still regret not taking a few more, but gee-whiz, they were a fortune.

 The boys went on a Kayak ride through the mangroves.

 Contemplating the sailboards

 Hanging out in the room...