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.

3 kids and a shushi restaurant

My dear friend Ru came up to visit today, and after trekking around with me to drive Micah's friend home and pick up Sam from TKD, she took us out to Sam's favorite sushi restaurant, Michi Kuza. Fortunately Micah can't read, because he adamantly did not want to go there, but didn't mind if we went to Fusion .

Sam loves Salmon Teriyaki, Micah had two orders of his special veggie maki (no sesame seeds), Sofia loved the edamame and tofu, and Ru and I totally pigged out on about 7 makis and some sashimi. Ugh, I won't be able to eat for a week! (ha, I wish!).

Tonight, Sofia managed to take off her shirt by getting David's eyeglass case clipped to it. In the forceful shaking she did to get rid of the case, the whole shirt came off. I wish I'd had the video camera ready!

Micah's eczema is acting up again, because it's finally spring. Oh well. I gave him another dose of his meds before bedtime. And David is off to Edmonton, but Ru and I will be watching movies all week. Last night, David and I finally saw "Borat". Oh my! It's appallingly funny!

Oh, I posted another page of photos on the photo website (see links at right). Check out Pirate Sam!

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...

'Roid Rage

Our Developmental Specialist told me this little phrase, and it so perfectly describes my darling toddler. She's been on Pulmicort (via nebulizer) for several weeks now (only one more week to go, I hope), and boy, does it affect her personality!

This afternoon, while David and Micah were at the office, I was typing and Sam was downstairs, Sofia crawled into the boys' room and started playing with Playmobile toys Sam had left on the floor. I called for him to clean up...and instead he came upstairs, pulled her away and locked up his room.

She sat in the hallway screaming with rage. She grimaces, she cries, she pushes.

At dinner, she was done before us and I put her on the floor. She kept trying to take things off the table, and when we took them out of her reach, she started screaming and crying.

What happened to my sweet baby girl? She's a full-blown toddler now. The good news is that she is motivated to learn new words, try new things, and do things like walk, so that she can actually GET what she wants. But oh, this is such a frustrating stage!

Weekend Update

Whew! I'm exhausted. It's been quite a busy few days.

Let's see...Friday morning, after bringing a total of 4 kids (including Micah and Sofia) back to my house for playdates (A stayed upstairs with me and Sofia while Micah and E were downstairs watching "Captain Blood"), the mommies both came over. Eventually D & A left for errands, and the rest of us went to lunch before MWJDS pickup. Playground time was nice (Sofia was very determined to walk around with her baby walker, and kept turning around when we tried to redirect her). Then we came home for a while, Sofia took a nap and had a both, David got home, and we all headed back out to Concord for Shabbat dinner at S&R's house.

We were really honored to be included; this was their daughter's Bat Mitzvah weekend, and dinner was mostly family. The boys got along great with their son and 2 small cousins - the 5 little boys all had their own table on the porch, and ran around the house like crazy. Miss Sofia was very hyper and happy, and quite enamoured with all the men who had beards and moustaches (which was most of them!). We got home quite late.

Services were at Chabad; I was very excited to go, since we've never been to services there before. Well, I never even thought to check the time, and there was a possibility that David would have the 2nd aliyah, so we got there at 9:15...and services didn't start until 10am! But the Rabbi was there, and the caterer (who we are vaguely related to - David's cousin is married to the caterer's wife's brother) and his family, including a 6 year old boy who became fast friends with Micah. They were inseparable until we left at 2:30.

Services were nice. I didn't get to stay inside much, since Sofia was bouncing around (I did take two walks with her, once with Sammy and once with RE). Sam had a hard time finding something to do. The kid program was too young/boring for him, and the older kids (most of whom he knows from our shul) are not really his friends. So he was a bit of a pain.

More Temple Israel folk showed up in time for lunch, which was delicious. R gave a very lovely d'var Torah, and it was a pleasure to see this young lady do so well.

So we got home around 3pm. The weather was GORGEOUS, so we put on shorts and went across the street to hang out with the neighbors. All the boys had a water fight (except Sam and A, who wanted to go back to A's house, of course). But eventually we came home, the kids watched Sesame Street while David and I napped. The babysitter
arrived at 7pm and we raced out to meet 2 couples at The Aztec for dinner. Then we all came back home (since the babysitter hadn't answered the phone!) and hung out for a while longer here.

Today was super-busy. Back to Concord, in 2 cars, for brunch at the house. Then David took Micah to Wellesley for a birthday party. I took Sam and Sofia - we stopped at a shoe store first - to his friends' party. Sofia was asleep, so I dropped him off and came home to change to cooler pants and get his Tae Kwan Do uniform. Got back to the museum (where the party was) just as J and R were going to lunch, so I drove, we got salads and sat at a playground (Sofia woke up just in time to join us). Picked up Sam, and took him to the next party, in Natick. Walked around Natick Center with Sofia for a while, then picked Sam up. We're home now, David still has Micah (they went to David's office after their party). I have to go make dinner now.

Miss Sofia is screaming in the hallway, because Sam took away the Playmobile toys she was using and moved her out of his room. Oy, a Rothkopf Toddler with 'Roid Rage. She's a trip!

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!

I Love My Friends

This is a bit mushy, but I really love my friends! I am fortunate to count as friends a variety of strong, cool, terrific women. Some have kids, some don't, some work full time for money, some are full-time mommies, some juggle both kids and a job. All are smart, caring, capable, dedicated, and fun to be with.

What I so especially like about the age that we've reached now is that we are capable of actually addressing issues together. I watch the kids at Sam's school (specifically the girls) start to enter that horrible posturing for position stage, and I know all the heart-break that awaits them ("yesterday she was my best friend, today I hate her"). I know all of that garbage is part of learning and growing, but oh, how I do NOT envy them! I love being in my early 40s, able to say what I want, thoughtfully, and come out loving and admiring my friends even more.

I know a lot of you are reading this, and yes, I'm talking about YOU. J, L, D, R, S, B, D, R, C, E, E, L, S, C and many others. I admire you all, I love you all, and I am so glad you are my friends!

I also appreciate this age because of how comfortable we all are with our worlds. Back in December, when I went on the Disney Cruise, I was happy to wear comfortable clothing, not worry about impressing anyone. We were able to tell the Cruise Director how we felt about the excessively religious Xmas music piped into the hallways, and we had a great conversation with him, without being confrontational (and we really appreciated that he checked in on us every day after that AND sent us a bottle of wine the last night at dinner!). Speaking up without just complaining - actually offering ways to FIX problems - is great.

(Now if I could just figure out how to fix the weather and get rid of this migraine...)

Micah had a great time today with his buddies, first at a science program at Sam's school and then at a magic show and then at lunch. Sofia finally napped at 3:15. Now she's ripping apart David's newspapers. Sam had a good day at school, except for an arguement with A. He's also very tired (they've been going to bed late this week, gotta try for earlier tonight). David's tire is flat, and the guy at the station said it can't be fixed. Yuch.

Brothers and other people who scream

Why does it seem like the boys are always screaming at each other? How do I get them to stop yelling and start getting along (I know, that's two different things).

And La Principessa likes to make herself heard, too, so it's usually quite loud in my life.

Sofia's also fallen in love with her toothbrush, and has even made up a sign for it. She must be teething, because she wants to brush all the time, which mostly means chewing on the toothbrush for 30 minutes. And the nebs are really hyping her up - she was awake until almost midnight last night, and today she has NOT taken a nap.

I'm still fuzzy - migraines every day for more than a week have really knocked me out (and the meds just make me fuzzier). I needed this pajama-day, that's for sure.

A funny thing happened to me in the blogsphere just now: I was wandering around various sites from the ladies on T21 and their links, and I happened to find a site withe a posting about Passover. I clicked the link, and realized that the photos were from B and K's house in Florida! Too cool. "Hey, I recognize that house!"

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.

Today's update

Well, Sofia and I never got home in the morning - we spent some time at shul in various informational meetings, and then did some major SHOPPING! I love Old Navy sales! And after an hour in Toys R Us, I still forgot the birthday present I need for tomorrow.

So I have yet to give Sofia her first nebulizer treatment of the day, and I just got her Azithromycin dose into her at 3pm. Oh well. But we did have a (semi) nice lunch with David (service and food weren't great - that's why Skipjacks is empty when Legal's is mobbed).

My current rant is about Community and the whole "how do we integrate the day school kids with the religious school kids at shul" issue. I had a nice talk with the Survey Committee last night, so now I have a plan of action (or at least actions to suggest). But I really strongly believe that we are supposed to be a community, supporting each other, and the animosity some people on each side show so openly pains me greatly.

The boys are watching Scooby Do In Hawaii - mesmerized, and both chewing their fingers. Sigh. Sofia is taking apart all the toys on my floor, and sitting IN the step stool again. Gotta go do nebs...

Shabbat Shalom, and have a peaceful weekend.

Health Today

I had to take Sofia back to the pediatrician again today, and now we're on another antibiotic and we have to go back to the Pulmicort along with the Albuterol. Poor dear sounds just awful, and she's certainly not as perky as usual. And boy is she GROUCHY!

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.)

My first blog entry

Well, this is my first entry. Nothing too much to say, since Sofia is downstairs unsupervised and we have to leave shortly to get the boys and Adrin.