She just doesn't "get it"

I've been processing this one in my head for a few days, but I feel like I had best blog it now.

Among the many things my mom "discussed" with us after midnight on Monday (after 24 hours in-transit) was Sofia.

Mom: "You tell her not to do something, and she hides her face and stops, then she gets back up and does whatever she wants."

Us: "Well, yeah, she's three years old."

Mom: "No, it's not just that, it's the way she is." (my italics)

Sigh.

I told my babysitter, E, about it the next day, and she said Mom had said something similar to her last week, too (although I guess for E she used the phrase "it's because of her condition.")

And E, bless her heart, was also bothered by it, and went home to talk to her mom, a special ed teacher herself - who said "Well, yeah, she's three years old!"

So while I am very pleased at how E and her mom (and all the folks at our pediatrician's office) reacted to this story, I just can't get over being so disappointed that my mom still doesn't truly "get it". She cannot get over the fact that Sofia is "different", "special", "slow", "retarded", "disabled".

Those are all in quotes, because except for being VERY special, I don't particularly think of her with those other words.

Does she learn things just a bit slower than kids her same age? Yes.

Am I glad that my last baby is growing less rapidly? Yes - I have been able to savor each and every milestone Sofia reaches, whilst with the boys, everything passed by ain a blur.

Do I think that Sofia's extra chromosome makes her any "less" able to achieve things? NO! This kid is going to achieve anything she wants to achieve.

But once again, my wonderful little bubble was popped, or at least deflated a bit, by the ...(arg, it's a harsh word, but...) ignorance of someone important to us.


***

In other news, the kids are all making me "pay" for leaving them for 2 weeks. Sam is still having his anxiety/panic attacks - I spoke to his therapist, and we discussed some calming strategies he knows (which means we spent 45 minutes last night searching for the "happy rock"!).

I had to take Sofia to the pediatrician yesterday, because she'd popped a fever, her face was all broken out, and she kept clutching herself in pain. After two hours hanging out in the office (thank Heavens Micah was there to play hide-and-seek and jungle gym with her, and then Heavens they keep lots of empty cabinets around!), she was much better. We had tried to get a urine sample, by putting a taped bag on her, but we didn't get enough. So I was supposed to try again this morning, but she was so FINE, that I told them never mind. There's nothing like a visit to the pediatrician's office to cure whatever ails us. (Heck, since I'm there so often, the office ladies and the nurses are all friends, too, so they got to hear the story of my mom).

Micah and I had "alone" time today (E took Sofia to the playground). We went to a few music stores, investigating guitars for Sam. I may have found a reasonable acoustic, smaller than my old guitar, but it might actually be too small, so I want him to try it. I also checked into hand-percussion lessons for ME! Yup, I am suddenly struck with the yearning to learn hand-drums (tof, dombeck, djembe types). And Guitar Center is having a sale this weekend, AND they had a small metal one for about $32, so we might go back on Sunday...

I think I'll take Micah and Sofia to the pool club for a little while now. Sam won't be home from camp until about 6:00 (they are stopping for ice cream and he wants to see his friend's new puppy). We might go to the fireworks in Sharon tonight, but it might get canceled on account of wind. Tomorrow, we are off to my friend's cottage in Rhode Island for the day.


Next week, when EVERYONE is in camp (!) I will work on an extended version of my trip to Tahiti.

Happy 4th of July weekend, everyone! (For those of you out of the U.S., that's Independence Day here)

Pain? Disability? Hardship?

I just read an interesting article in last week's Newsweek, about Holly Robinson Peete and the widow of Brandon Tartikoff. The article is part of a series about women and power. In this article, there is an emphasis on the hardships and pain that both women have faced: Tartikoff's husband died of cancer and her daughter suffered brain damage from a car accident, Robinson-Peete's father (Gordon from Sesame Street!) died of Parkinson's and her son has autism.

The article made me wonder, though, about the words we use to describe life. Is it a hardship that my daughter has Down syndrome? Do I feel pain because one son has dyslexia? Are Micah's food allergies a "disability" to him?

I spend so much time looking at all the positive things about my kids - how incredible they all are, what their unique talents and personalities are, how they handle their individual lives - that I sort of get pushed back when I hear the "sad" words applied.

I'm NOT sad that Sofia has Down syndrome. I'm thankful that she is able to do so much and that she is so much fun to be with, and I consider myself so lucky to have been included in this special world of T21.

I'm less positive about Sam's dyslexia, because of his personality. This will always be a challenge to him, and he gets so anxious about everything. So I worry about him. But I wouldn't trade his creativity for anything.

I fear for Micah's health, if he eats something he is allergic to, but I also know how to deal with it - a few weeks ago he accidentally ate some crackers with sesame, so I gave him Benadryl and watched him carefully for 2 hours, but the few hives that appeared quickly went away. And I am so impressed with how he handles it himself. He's very cautious (usually!) and very clear about what he can and cannot eat. He's calm, and neither panics if he's near something he can't eat nor gets overly jealous about it.

So I don't consider that our family has received an unusual amount of "pain" or "hardship". Ours is just more concrete, more definable, than others. We have a loving family, the monetary means to live the way we want, the resources to get our children the best education and health care available, and the community to feel comfortable and at ease with ourselves.

It will be interesting to see how the Transition from Early Intervention to public preschool goes. My online friend A recently wrote on our discussion board about getting her daughter's eval, and how it's difficult, because in every-day life, we are so accustomed to focusing on what our kids CAN do. Having to evaluate my daughter in terms of what she CANNOT do, or what she IS DEFICIENT in, requires a big mental shift. And, as A stated, it's absolutely necessary to define the deficiencies, because otherwise our kids would not be eligible for services!

Ok, enough musings. Sofia is sound asleep (yes, she fell asleep...in the car...at noon today, but only because we were out shopping all morning) and I should do some homework. I bought bth boys little MP3 players - it will be a birthday present for Micah and a treat for Sam, so don't tell! They were really cheap - 1 Gig for $25, little clips to attach. Should be fun. They'll be great for our trip to Israel in December.

Just checking in

It's been a busy week as usual. Today was another holiday (Shemini Atzeret), and tonight and tomorrow are Simchat Torah. So the boys were out of school again today (and tomorrow), and tonight we all went to shul and danced like maniac, celebrating the Torah. Sofia had a blast, waving a flag in the air and marching around the room, and then she settled into the arms of our friend T, who is definitely on the verge of being ready to be a grandpa! They looked adorable together.

This afternoon the kids and I went to R's house and her daughters and our friend D's daughters and my boys all played together. Micah accidentally ate some chips that had sesame in them, but the Benadryl I quickly dosed him with seems to have worked fine - no other adverse reaction. Whew!

It was gorgeous weather all week, so we were able to eat in the sukkah every night. Today and tomorrow are HOT and muggy, 'tho. Yuch.

The other night, I got a phone call from one of the CJP volunteers. CJP is Combined Jewish Philanthropies, the umbrella organization for many Boston-area Jewish organizations. Anyway, the woman who called turned out to be someone I had known back in USY when I was in high school! She'd seen my name on one of the lists, and even though she wasn't supposed to be the one to call me, she did!

I'm so glad she did, not only because it was nice to hear from her, but it turns out she's a Geneticist in Boston, and we ended up with her taking my phone and web info to pass along to new parents getting a diagnosis of Trisomy 21! I'll be so glad to help people who are just discovering the unique (and wonderful) world they are about to enter. (Oh, and she's a nice single doctor - anyone know a nice Jewish boy for her?!)

Ok, why am I up at 12:55 am? Because I keep taking naps in the afternoons because I'm so exhausted! Oy. I'd better get to sleep.

Oh, and October is National Down Syndrome month!

Twisty Ties

Do I lose my status as a Domestic Goddess if I use twist ties from the produce department to tie my daughter's hair back? My neighbors thought it was a rather Martha Stewarty-thing to do. I couldn't find any hair bands and we were on our way out the door to play (and the boys had grabbed handfuls of the twist ties when we were shopping). Anyway, it really did work, held that pony tail better than some of the "official" hair bands we own!

"Twisty Ties" is also a good name for this post, because this morning we followed the twisting turns of our lives to have a playgroup with people (to whom we are "tied"). (Ok, I'll stop with the metaphor - it makes sense to me, but 'nuff said). Anyway, back about a year and a half ago, they'd held a Down syndrome playgroup/meet&greet at our EI center. There were a handful of moms and kids, ages ranging from about a year to nearly 3. Several of us moms had planned to get together on our own - and that very week, one of the babies in the group died suddenly (see Because of Sophia, Maria's blog). So we never got together. But this summer, another mom started emailing us, and eventually I had the idea of asking to use the center (and invite new families).

It was lovely. Unfortunately, two of the original planners didn't make it (kid issues), but we had my friend N and her 2 month old, one of the other "original" kids who is now 3, another boy Sofia's age, and an adorable little Miss of 15 months. We also got to use the center, and our Speech Therapist and another OT stayed with us.

I was proud to be the official facilitator, and I called on everyone to share their stories or words of wisdom. It was so nice to meet or see everyone!

Here's Sofia, hinding in the stairwell after playgroup - she loves this spot!

I'd forgotten when I scheduled this that today was the 2nd day of Sukkot and the boys would not have school, so before the playgroup, I dropped them at my friend J's house - her two girls are very good friends with my boys (her older daughter and Sammy look identical from the back, same long dark hair, slender bodies, same height). They all came back to our house after the playgroup, and we had lunch in the sukkah, and the kids rode their bikes and played while J and I relaxed and chatted a bit.

Then I packed my gang back into the minivan to race to Sudbury for my haircut (which I'd also scheduled for during the holiday!). Sofia fell asleep in the car and stayed asleep in the stroller during the cut, but of course woke up for snack at the Cafe afterwards.

Here are Micah and Sam playing on the Nintendo DS during my hair cut:

A quick stop at the grocery store, and home again. Micah and I were on the computer (I made a DVD last night for my cousin, of the wedding pictures from last July), Sofia and Sam were playing. Eventually Sofia and I went outside with Sam to visit the neighbors (that's when I grabbed the twisty tie for her hair).

We had a really nice dinner in the Sukkah. The weather has been just lovely today. Not too hot, not cold yet.

Oh, and I just love the fact that Sam askes every week who we are having over for Shabbos dinner, and gets really annoyed if we are not having company. Today he invited the other neighborhood kids (but they couldn't come). We still had a nice Shabbat, but I'm so glad that he's taken the idea of Guests so seriously.

My daughter has Down syndrome!

Ok, yes, I've know this for 3 years, since before she was born. Yes, we work with it every day. But once in a while, it just bumps into me.

Today was one of those days. We had ballet class again. And this time, since there was no photographer to distract us, the class could stay formatted as it should be. So I got to watch 7 little girls somewhat follow along with the teacher, and Sofia just take it all in.

She did participate a bit, including putting on a tutu (and cleaning everything up, better than anyone else). But when we got to the songs, which were new or new versions of songs we know, she couldn't keep up. They were too fast.

It didn't bother me. It was just interesting. And it gave me a little taste of what life might be like for her when she's done with the coddled and protected world of Early Intervention.

David says he "sees" this all the time, but I don't. We've got three little friends who are all about the same age as Sofia (all their names start with "A"!). I've watched Sofia around these girls all their lives, so I don't "see" anything different. This is just the way they are together.

But seeing a group of girls I don't know, and moms I don't know, and a teacher I don't know, threw me for a loop. It wasn't quite a punch in the tummy, because it didn't make me sad about the situation specifically, but it did make me fearful about how her life will be if she doesn't have someone really looking out for her in school. I hope that she always had good, caring teachers, but how can we always be sure?

Why am I awake at this hour?

It's because David isn't here to tell me to shut the computer and go to sleep! He'll be back in a few days, so I get to web-surf to my hearts content, even if it means I'm slogging during the day.

Just read a few beautiful blogs - the gorgeous Miss Elianah's mom has a terrific blogroll. A common theme on all of these blogs from parents of kids with DS is how we defend our children, our families, and our special views of the world from those who would wish away our kids without ever reading them. The scariest thing I read tonight was a 2000 report on the cost-benefit analysis of how the US and UK do (did) DS screening - and it was co-written by a team from UCONN - no doubt by people who my BIL works with.

I don't know how to say this. I know my sister and BIL love my daughter. But do they think we were somehow wrong for having her? And if they do, is it because they are "armed" with the medical knowledge, but have no idea of the joy Sofia has brought us? I hope I'm just being paranoid. But I suspect I'm not.

Ok, enough melancholy. Yes, I'm still a bit in denial about the fact that there is anything unusual about my daughter - other than that she is an amazing little girl, of course. A few weeks ago, when I was in my melancholy funk, we were all out for breakfast, and I was aware that there were a few sour people staring at our table. Normally, I'd just assume it was because Sofia was gleefully flinging crayons to the floor and the Micah was talking a mile a minute and Sam was whining and moping with his hair in his face. But that day, I got a little more of a "hit" about what they might be staring at. My daughter really is "different".

They don't know the half of it! She's different - from her brothers, because at two and a half she can already use a fork way better than Sammy can, because she has a more sharply honed sense of what clothing she wants to wear than Micah ever did in his worst days, because she can swing in the toddler swing for half an hour without getting sick (although she walks like a drunken sailor when she gets out). She's different - because her mommy adores her and encourages her to do just about everything (within safety limits - I would NOT let her climb into the fountain at miniature golf today, despite her protests).

I took her and the boys to mini-golf, along with our friends, who have 2 boys. The 4 boys were the official golfers, but the guy at the desk gave Sofia a toddler-sized plastic golf club and a ball, and she had a blast wandering around the course, either throwing the ball or hitting things with the club. She was also fascinated with the fake deer at the end of the course.

I'm rambling. We had a lovely Shabbat dinner at our friends' home in Concord on Friday, but Sam was still feeling sick and passed out on the couch. That afternoon, Sofia had also been more sick, and had a weird rash on her neck. I ended up back at the Pediatrician. They still just have a virus, but the dots under Sofia's neck might have been from rubbing against the pillow. Doc scared me by telling me that we should keep an eye on it, and if it got worse we'd do blood tests - I panicked and asked her if that was a lead-in to Leukemia, but Thank G-d she said no!

So Saturday morning, we'd planned to go to shul, but both Sam and Sofia were still sniffy and slightly feverish. I sent David and Micah to shul, and Micah ended up falling asleep on David's lap for an hour, also feverish. When they came home, all 4 of them took a long nap (Micah on the living room floor, the other 3 in bed together). In the quiet, I got to clean the entire pantry, and then took a short nap myself.

The sleep was what they all needed. This morning the kids were much better. They all have stuffy noses, but we got a lot of fresh air this afternoon (I took them for a long ride and then to mini-golf), and it helped alot. Hopefully everyone is on the mend now.

Tried to take the boys rock-climbing at REI, but the wall is still under construction. We had a nice chat with A, the guy who runs the climbing wall. He's a great guy, and has really taken Sammy under his wing with the climbing. It was a bummer they couldn't climb yet, but they enjoyed talking to A, and I also bought Sam a new school backpack.

I started "working" tonight - I'm making a family video for a friend, and I had to scan in about 40 pictures first. I love making slide-show videos. It's a lot of fun.

Nothing much planned for this week - the kid next door is coming over for the day tomorrow (as long as none of us have any fever). Micah might go visit another friend. I hope the weather is warm enough and everyone is healthy enough, because I'd really like to go to the pool again!

I Love Beverly Beckham

For those of you who do not know her, Ms. Beckham is an award-winning columnist for the Boston Globe. But most specifically, she is grandma to Lucy, who happens to have that extra chromosome like Sofia.

Honestly, I've never read any of her columns that were not about Lucy, but boy, are the ones about Lucy TERRIFIC. Here's the latest.

Today I actually finished my Hebrew 3 Final Exam! I actually did most of it last night, including writing an essay about my life in 10 years (at least I hope that's what the directions said!). So to celebrate, I took the 3 kids off to the Ecotarium, a really fun little science center in Worcester. They have a real polar bear, a nice nature walk, and a choo choo train. We all had a lot of fun. The only "funky" moment was when Micah touched the peeled-off skin of the snake during the demonstration, and Sam practically exploded with nerves - "We have to go wash his hands NOW Mommy!" Nothing like a little OCD to add to the fun.

I took Sam to Tae Kwan Do after dropping Micah and Sofia back home with the babysitter, and then tonight I got to go to a Pampered Chef party. Nice to relax for a moment. But on the way to TKD, I was talking to Sammy about my friend and her new baby, and how they are still upset about the baby having DS. I had to explain to my son about how life with DS used to be so different, and that even now, people still have old ideas about what to expect. Sam was very curious, and I made sure to emphasize the positive changes that have happened in time for Sofia, but I did let him know that when I was a baby, kids with DS were regularly put in institutions, and even today, most people who find out ahead of time choose not to have the baby. Sammy, being the incredibly sweet soul he is, ended the conversation by asking about people who adopt kids with DS, so we were able to celebrate the many people on the DS waiting lists. (Then he asked me why WE don't adopt a kid with DS, and I had to get into the whole "I'm already outnumbered by you guys" conversation!).

On the way to the party tonight, I was thinking again about all the positive things that Sofia's extra chromosome have brought to our lives. The ability to celebrate every little milestone. The ability to meet so many other people in the extended DS family around the world. The ability to move slower, and to appreciate just how each of my kids thinks and learns in his or her own special way. I had talked with Sam about his dyslexia, and told him that, instead of being sad about it, I make sure to give him the tools he needs and then I love to just watch the different way his brain works. He can come up with so many unusual ideas, questions, creations, and comments. It's fascinating to watch his brain in action.

And every kid is fascinating. They are all different. And all so wonderful!

(Mmmmm, I'm getting a shoulder-rub from David now. That's really wonderful!)

I'm so proud of Sam

My older son, Sam, has dyslexia, and he qualifies to attend the summer school program in our town. During the school year, he goes to a our local Jewish Day School, so he's not usually with the kids from our town that much.

This summer, he is having so much fun, making lots of friends. This is his third week, and every week, he's got new friends.

So this week, he's been talking about this girl, C. Every day, he comes home all excited, with something new to tell me about C - something always related to him, such as "she has a brother who will be 6 in October, and a sister who is two and a half". Yesterday, it was "C is coming to my school next year, and she's going to be in my class!"

Now, I'm on the recruitment committee for our school, so I think I'd know if there were any new kids from our town ('cause I'd be expected to contact them already!). Last night we had the school Picnic, so I asked the admissions director. She had no idea who this girl could be, there are no new kids from our town coming to the school this year.

Last night, I had a little chat with Sam, telling him that this girl probably just really likes him and wants to tell him things that will make him happy. He was ok with that.

Well, this morning, I walked Sammy up to school, and I got to meet C. She's a lovely, majestic blond-haired girl of about 11 (he's 8). And she has DS!

I was so proud of Sam. He'd never even registered the fact that she had a little something "extra". To him, she is just a really nice girl in his class who he likes to play with.

I get teary-eyed with pride, just typing this!

Where did all the 2 year olds come from?!

For the past two years, I have been part of a wonderful on-line community (www.trisomy21online.com). While the kids in the group are in a variety of age-groups, we do have quite a cohort from Sofia's year. And for a long time, all the moms (and a few dads) were content to write about the little details of our sweet babies lives.

Well, they've all turned 2! And what a lively bunch of toddlers we've got! It seems like every other post now is "look what s/he got into today". It's amazing to watch an entire gang of supposedly "disabled" children explode into the exact same type of wild, self-centered, stubborn behavior as their 46-chromosomed counterparts.

La Principessa had been in a MOOD all day - er, make that all week. She is stubborn, demanding, loud, and mischievous. She's also a bit spitty today, so she's not feeling 100%. So I'm exhausted.

I made a DVD to send down to our friends in Florida, and when the kids and I watched it (for proofing purposes), every time David's picture appeared, Sofia cried out for him. It was very sweet.

I finally got up my courage to go into Barnes & Noble and talk to the manager about an author event - and the manager was out! But I got the name of the person, so I'll try another day.

I'm downloading video for J now, and will make her a DVD from her memory sticks. This is fun.

Falling into place

Hmmm, it all just falls into place sometimes, doesn't it? I am thrilled to announce that I just hired a Mother's Helper! Sam's new reading tutor, E, a student at Framingham State College, just told me that once school ends next week she's free for the summer, and is looking for Mother's Helper work. She's a sweet girl, and the boys already really like her. Sooooo, next Monday, she'll be joining us for the 5pm - 7pm mishegas.

Sofia's not feeling great today - she just took a long afternoon nap, and now she's a bit crabby. I do hope she's not getting sick!

We had the Mother's Day Celebration and Shavuot Program at Micah's school this morning. Very cute, and Sofia really enjoyed sitting with the kids for the singing in the morning. (I'll try to put up some video later).

And most exciting, my order of "Gifts" arrived yesterday!!!! I gave CK and JLB their copies this morning. It looks so cool. SC from MDSC wants to put my article in the next newsletter; I've emailed R to see if that's allowed. That'd be cool.

I've been really tired, too, and with the rain today came a massive migraine, but I managed to get a nap in this afternoon, and I feel a little better now. We're going to friends tonight for Shabbos dinner (David is meeting us there; he still hasn't left the client site), nothing much planned for tomorrow after shul, and 2 birthday parties on Sunday.

Oh, my mom was passive-aggressive about Mother's Day. I know she wants us to come celebrate with her and make a big deal about her, but we simply can't. And I've gotten to a point where I am (somewhat) comfortable just knowing that my own household comes first. But it's still stressful to have to deal with her when she's like that. Especially when she did come and take care of my kids so I could attend the conference!

I am still processing all the information I learned at the conference. I enjoyed making new friends (especially J and D and A), and I feel very empowered. I'm trying to get the kids' paperwork (IEPs and medical stuff) organized, as suggested in several seminars.

Ok, Micah is demanding my attention now...Wishing you all a peaceful weekend.

(Oh! Sofia said "row row" this morning in babysitting!)

Early Intervention Conference

Greetings from the Early Intervention Consortium! As a Parent Contact, I was invited to attend this terrific conference. I got here a little late (had to drop the boys at school first; my parents are watching Sofia and picking up the boys after school).

The keynote speaker was very good, but some of what he said saddens me. Basically, by "labeling" someone with a diagnosis (dyslexia, Down syndrome), we segregate them from the rest of the community. And it made me sad for what the future might bring for Sofia. But at the same time I realize how hard I fought to actually GET a label for Sam (dyslexia), while I fight to NOT label Sofia with T21.

The first workshop I went to was about the Parent Leadership Project, which is how I'm here. The second was an excellent workshop on Advocacy. I had drinks with J, another DS mom, and then we had a nice Parent dinner (M from our playgroup is here also, with the baby). Now I'm in the room, rooming with another DS mom.

It's been really nice to meet everyone, and I feel like I'm learning alot about the resources that we have and how to fight for our children's rights. And it's just nice to not be home!

Lag B'Omer and Cardiology

Well, today was a good day. After I dropped off the boys at Sam's school (Micah gets a ride from there to nursery), I had my Torah study session, which I've missed (we've skipped it for about 5 weeks in a row). Always a nice conversation; today we discussed the idea of a Sabbatical, taking time off from normal routine to concentrate on yourself.

Then Sofia and I went to Children's Hospital in Waltham for her annual Cardiology checkup. She "passed" with flying colors! We can now dismiss three of her "issues": the cleft mitralvalve is so minor it makes no difference, the VSD seems to be clearing, and the PDA is sort of a non-issue. So officially she has an ASD and Pulminary Stenosis. They did not do an echo today (it's tough to do a non-sedated echo on a two year old; they move around too much). We'll come back next year, probably also no echo at that time. If we determine that she needs to go to the CathLab, it won't be at least until she's 4, more likely 5 or 6 years old. But if the right chamber isn't dilated, we won't have to do anything! And she no longer needs to take antibiotics before dental work (new finding from the ADA). Yippie!!! (Oh, and she weighed in at 21 lb, 15 oz!)

Sofia fell asleep in the car on the way back, but I had to go buy ice for the school, so I transfered her to the stroller and did my grocery shopping by balancing everything on top of the stroller, including 30 lb of ice! Whew.

Then I met JB over at the new school site, to drop off the ice and eat my lunch.
Then picked up Micah, and went back to MWJDS to meet J for an OT session. Sofia was walking all around, taking breaks just to eat.

The kids played after school, then we came home and I fell asleep, while the boys went across the street to have a water fight with the other kids, and Sofia trashed my room by dumping the laundry everywhere. Then we picked up the pizza and went to the picnic!

We held it on the new school property, which is incredibly beautiful. It was a really lovely evening. And I got all the Brandeis alumni to pose with their kids for a shot for the Brandeis Review. Very cool:
Drove JT home, listening to the three boys cackle about "flaming cow dung" when we passed the farms in Holliston. Sofia somehow managed to fall asleep during all their yelling, and even stayed mostly asleep when we got home and I changed her into her pajamas. The boys both peed in their pants, and Sam put his right on top of my (cloth) purse for the ride home, so I'm doing laundry now.

Ok, I stayed up way too late, playing on the computer last night, so I'm shutting down for the evening (ok, soon. Really!). G'night!

Off to Florida!

We're all heading to Orlando tomorrow afternoon (that is, assuming David ever gets out of Denver tonight - so far his connecting flight is delayed 2 hours, bringing him into Boston at 2:27 am!). David is speaking at the ASQ Convention on Tuesday, and Micah finally gets to go to Disneyworld.

But the first thing we are going to do is visit T & M and their girls, in Melbourne. I've know M since junior high, we dated briefly in high school, and have remained friends ever since. I went to their wedding in Alabama, and they came to ours in CT (she was 7 months pregnant!). Their oldest girl is about a year older than Sam, their second is a few months younger than Micah. Then I knew that they'd had a 3rd daughter, when they moved to Duluth (after first moving to Texas); this one had "health issues", but I never really found out the specifics, I just knew that she was doing well. T and I would send December cards or give a call once a year. So I called, when I was pregnant with Sofia, for our annual chat. During the conversation, I mentioned that the baby would have Down syndrome, and there was silence on the other end of the line...and then she said "You know our youngest has Down syndrome?" NO! I had no idea!

Since then we're really re-connected, and T and I email pictures and updates regularly. They now live in FL, not too far from Orlando. I'm REALLY looking forward to seeing them...but I'm also nervous. I know that their daughter has different issues than Sofia, and I don't want them to be upset by Sofia doing something that their daughter hasn't yet done (ambigous "something", I don't have anything specific in mind).

I have learned to be this nervous from past experiences with other families of children with DS. Fortunately, these are my friends, and I know that, like my other friends, they will just be happy for my little girl. But I've had two really bad experiences with other families: At our first EI playgroup last summer, there was another little boy with DS. The mom took one look at Sofia, and burst into tears. I heard her vehemnt conversation (in Portuguese, but clear gesturing for all to observe) with the OT - "Why isn't my son doing this? What am I doing wrong?"). Then, this past March, I went to our first Etgar L'Noar Tot program. D was there with B, which was nice (and since he's 2.5 years older than Sofia, there's really no way to compare them even if we wanted to), but there was also another child with DS, about a year older than Sofia, with very low muscle tone. The dad watched Sofia happily playing with the toy castle (and standing up to reach the third teir), and you could just see his face drop. He was comparing.

I feel bad for making these people feel bad. I do not apologize for my daughter (heck no - I'm SOOO proud of her, but everything she does is because of HER distinct personality and unique combination of physical abilities). But I feel bad because these people have not yet realized that every child is different, and that their kids WILL eventually do what they are meant to do, but at their own pace. And I hate seeing other people look at Sofia sadly. She is so not about sadness (oh, unless you see her new talent, the "Pout Wind-Up to Crying"). She is a joy, and it pains me when seeing her does not bring joy to others.

So I hope to heck that this visit will be smooth, and that, since we ARE friends, they will also recognize the individuality of all our kids.

I'm also somewhat stressing about Disney, but I think it'll be ok. We've traveled enough with Micah to handle his allergies, and supposedly Disney is good about showing menus and ingredient lists if asked. Sam's a nervous wreck right now about air travel (he gets worked up about airport security, it frightens him a lot), so he's not even thinking about our destination. Micah is calm (well, for Micah); he's just planning to "Shake Hands with Goofy". And Sofia's had an upset stomach for 2 days, and was spitting up alot today, so I hope she's not coming down with something too!

Ru and I ended up going to the mall this morning after my hair appointment (we were already so late for the class I was supposed to take at MWJDS). I got some nice clothing at Chicos, and a new bathing suit.

Now I've gotta go pack! And since David isn't back yet, I can't get the giant suitcase from the attic (I can't reach the door in the ceiling). So I have to figure out another option. And if he has to go direct from Denver to Orlando, I'll have to pack for him, too. Oy.

X-Men 3 and "The Cure"

Hmmmm, we just watched X-Men 3, and while it was a fairly poorly written movie, with too many simple answers, it certainly raised one big question:

- If there was a possibility of a cure for a genetic mutation, would it be ethically and/or morally correct to offer that cure, or would some people feel that it was imperative to issue the cure?

Obviously I'm not talking about the X-Men style mutation, but rather that little extra chromosome. If there was an antidote for Trisomy 21, would I want to "cure"
my daughter?

It's a wild question. My gut feeling is no - that extra chromosome is part of what makes her Sofia, a unique person in the universe. A teeny part of me wishes she wouldn't have to encounter all the ignorance and prejudice in the world - but I realize that there are people who will always find SOMETHING to hate other people about.

Sofia communication update

We met with our Occupational Therapist and our Speech Therapist today, and La Principessa added several more words to her vocabulary:

Signs:
31. play/toy
32. cow
33. pig
34. sheep

Verbal:
13. pig (with a very clear 'p')
14. moo
15. done (I forgot this one last time)

I tried on her bathing suits tonight in preparation for our trip to Orlando this weekend. She's really grown in the past few months. She looks adorable in the two "new" bathing suits (also hand-me-downs from G, but they hadn't fit until now).

I had the boys try on their bathing suits, too. Micah surprisingly still needs to wear the size 4 suits - the larger ones fall right off him!

I'm a little nervous about Micah going into a public pool (or at camp): the last time he was in a pool was at S&G's house in October, and he pooped! And tonight he pooped in the bathtub. Yikes. I'm going to have to have a long talk with the camp people before I send him there. Ugh.

Got the boys new flip-flops, and got Sofia some soft baby sandals (they are a 6-12 size, but very flexible, and fit better than the size 4). I love the Children's Place flip-flops, 2 for $5.

David is off to Edmonton tomorrow, but R is coming up to visit for a few days. And my dad is having surgery on his shoulder tomorrow afternoon.

I'm still feeling a bit spacy. The weather was very hot today, and then in the evening it cooled off and I started getting a headache again. There's a lovely breeze now coming through the windows, but it will cool off more soon.

Tried to get Disney's info people to get me food lists for Micah's allergies. Not easy to do, and they wanted to fax them to me. I couldn't find David's fax number anywhere, and then we got disconnected. So now I'm trying to look on line.

Oh, and I spoke to two potential tutors for Sammy. The one in Needham only works out of her house, won't actually go meet him at camp, so she's going to try to find me someone else in the area, but she's still a backup. The FState student is coming out her Thursday to meet us.

Ok, we're going to watch "Borat" now - J lent it to us...

Sofia's communication skills

Just felt like making a list of Sofia's words and signs to date...(I may edit this later to add more...)

Signs:

1. Dada
2. eat
3. more
4. please
5. thank you
6. dog
7. duck
8. cat
9. tiger
10. on
11. off
12. up
13. in
14. out
15. cheese
16. milk
17. water
18. music
19. book
20. all done
21. baby
22. brush teeth
23. telephone
24. hi
25. bye
26. fish
27. hat
28. help
29. car
30. wipe/napkin
    

Verbal:

1. mama
2. dada
3. dog
4. belly button ('beh beh buh' along with a belly wiggle)
5. duck/quack
6. hi
7. bye
8. specific sounds for both Micah and Sam
9. yup
10. clean-up ('lllllup')
11. hat
12. "sounds" like zip, zoom, whirr, etc.

She can walk while holding one hand (although she prefers to hold two hands, so she'll wave at random strangers for help in passing). She can take a few steps without holding on if she's balanced well.

She likes other kids and she likes men. Grown up women make her a bit nervous (since she thinks I might leave her with them to babysit!).

She's also got a strong talent for ripping paper!

Weekend Update and Mommy Shuckling

"Sunday Morning" by Laurie Blank

Well, it's Marathon Monday, a.k.a. Patriot's Day, and there's a Nor'easter out there. So we're all (except David) still in our pajamas, watching the marathon on TV (although now the boys have switched to "Lion King 2", while Sofia is reviewing my Sudoku book). I'm typing, with yet another migraine trying to work its way into my brain.

Busy weekend. Friday night we went to our friends in Newton for dinner, but I forgot that they have a cat, so Micah had a bad allergic reaction. I had to give him Benadryl while we were there, and use the inhaler when we got home (he's graduated from nebulizer to that bag-thing with inhaler). Sofia is still on Pulmicort, too, and my allergies were bothering me, but not as bad as Micah's.

Saturday morning I had to read Torah, so I left David and the kids home (so he could do nebs with Sofia and get everyone ready). I got a migraine as soon as I got to shul, but I managed to read ok (fortunately DE and ML were the gabbaim, and they are very gentle correctors). I left before Haftorah, because the migraine (or the meds) made me feel awful. Got home, packed everyone up, and headed down to David's cousin's house for A's birthday party.

Nice time, nice to see the extended families. We stayed late (of course), and got home around midnight. The 3 boys got along great, and Sofia had P's mom charmed (she's really ready for another baby grandchild!).

Sunday David took Sam to work for a little while, and then tried to go climbing, but it was too crowded, so they went to the arcade for a little while. I stayed home with the little ones and another migraine. B arrived to babysit at 1:00, and David and I went to a birthday party at an art gallergy - and we bought a painting! I have NO idea where it's going, but it's really lovely (see above).

Then David and I spent 2 hours in Borders. I found a lovely book about DS: Just The Facts Series: Down Syndrome , made for kids, but it reads really nicely for adults too.

Ok, about "Mommy Shukling":
Wikipedia defines shuckling, from the Yiddish word meaning "to shake" (also written as shokeling) is the ritual swaying of Jewish worshippers during prayer, usually forward and back but also from side to side. This practice can be traced back to at least the eighth century, and possibly as far back as Talmudic times. It is believed to increase concentration and emotional intensity (Eisenberg 2004:360). In Chassidic lore, shuckeling is seen as an expression of the soul's desire to abandon the body and reunite itself with its source, similar to a flame's shaking back and forth as if to free itself from the wick (Tanya chapter 19). Many Jews shuckel while engaged in anything requiring focus and concentration or extreme seriousness, even mundane activities.

So Saturday morning I found myself shuckling, as usual, and since I wasn't feeling well, I started to think about how "Mommy shuckling" is different from the standard prayer shuckling. Look at most mommies, especially of younger kids. We all SWAY almost constantly, right? It doesn't matter if we are actually holding a baby or not. That soothing motion becomes a part of us. Besides the fact that my knees and hips hurt too much if I stand still, I find the side-to-side rocking very mentally soothing.

So that started me thinking about community and family (my current "themes") - do I 'mommy' myself when I shuckle without holding someone? How important is it to mommy myself? (I think it's VERY important!) How do we physically comfort others? When someone cries and we hold them (child or adult), we usually rock back and forth, another form of shuckling. I like it.

Fine-tuning this thing

I'm still trying to figure out the content filters and "crawlers" for that thing on the side, but I think I at least understand how it works. So now I'll talk a lot about how all our Special Needs have been so important in bringing me to this point.

Down syndrome: When Sofia was born, 26 months ago, we were already prepared for her diagnosis. Trisomy 21, an extra chromosome on the 21st pair. But being involved in the Down syndrome community has been an incredible learning experience for me these past 2 years. In the "virtual" world of the Internet, I've "met" so many people with such varied experiences and backgrounds. In real life, my life has been incredibly enriched by all the amazing people who help me provide Sofia with the best possible education.

Food Allergies: While Micah's food allergies have not provided us with nearly as much fun and amazement as Sofia's DS, dealing with food allergies has been an empowering experience for me. He's up to 12 foods:

• Tree nuts
• Peanuts
• Sesame
  
• Soy
• Grapefruit
• Apple
• Mint
• Zucchini
• Yellow Squash
  
• Sea Bass
• Haddock
• Black Bean

Plus he's allergic to Penicillin. I found a wonderful site to order "taggies" for him, from a place called "Letters 'n' Wood" (link is to the right). Micah's tag is customized, and says "Severe Allergies/Penicillin/All Nuts/Sesame/Others". He pins it to his shoulder each morning, and is proud to show it off to people. He is a very responsible little fellow, and very cautious about what he eats.

Dyslexia: Sam was diagnosed with a "Specific Reading Disability in the English Language Arts", which in another state would be called dyslexia. Right now he is making terrific progress, thanks to the amount of time and energy his school has put into his education. They use the Wysnia-Kapp method for reading.

Crohn's Disease: My dear husband has suffered from Crohn's since he was a teenager. It gets worse when he's very stressed (which is quite often), and when the seasons change.

Skin Cancer: Yup, that's mine. I had a malignant melanoma in situ right after we got married. Now I slather on the sunscreen, and go for screenings every 6 months (more often if I see something that worries me). I'm just coming out of my sun-phobia, after 8 years, and learning how to live in the light. This summer it will be interesting to see how I handle the pool club.

Really doing a blog!

Ok, I can't quite believe I'm joining the blogsphere. But David is encouraging me to do so, and I figure I might as well give it a try. I love to brag about my kids, right?

Today's conversation was about what to do with the boys over the summer. I was so tremendously stressed having them home for Pesach, and I'm a bit nervous about having Micah home again next week for school vacation. I have no idea how I'll cope if they are home all summer. So I called Ashland Public School Special Ed Dept. Sam has not yet been accepted for the summer school program (Morah A. is still working on the copious amounts of paperwork required), but I just wanted to know what the camp schedule would be. They still don't know! It's mid-April already.

Well, I thought of another (albeit far more expensive) idea: send Sam back to Kaleidescope, and get a tutor to come to the JCC. Fortunately, P. was able to recommend someone - now I just have to get around to calling to see if she's available, and then see if there's still room at camp. And JT is going again, so his mom can drive every day on her way to work.

That leaves me with Micah. Micah would do very very well in a structured, FULL DAY camp program. The question is, where do I send him? Put him on a bus for 45 minutes each way (same as Sam's ride) to go to Grossman, where I know tons of kids and adults? Or stay local, hoping he'll have a better experience at someplace like Pilgrim than his brother did? Big cost differential there.

If I can get both boys into camp at least a few weeks at a time, and then fill in with some Ashland activities, Sofia and I can enjoy the pool club, and the boys can swim in the evening. And I won't be so tempted to scream...

Which brings me to my toddler. What happened to the sweet, quiet little baby girl? Now she's a screaming, demanding, opinionated 2 year old! She really lets her brothers (and me) know when she's pissed off about something. The faces she makes are hysterical, but the screaming can get on my nerves, especially at dinner time. MWT got on the phone with her this evening, since the screams were interupting our own conversation, and told her to pipe down. She made a face at the phone (and then waved "bye").

Ok, gotta study - I'm reading Torah this weekend before we go to AW's birthday party.

(Just a note, I'm going to try to only use initials for anyone other than our family, unless it is important that the full name be published.)