Thursday, March 31, 2011

Excellent Tim Shriver interview

Wednesday, March 23, 2011

A Response to Stares

My remarkable friend Tammy over at PrayingForParker posted a thought-provoking item today titled "When the Stares Start". On first reading, my response was based on my own reactions (you can see my response in her comments section).

Reflecting further, I remembered something from the Special Education in Jewish Settings course I took a few years ago - the course that led to my thesis topic; the course that I will be helping to teach this summer!.

One who sees people with disīŦgured faces or limbs recites the blessing, “Blessed are You, Lord our God, King of the Universe Who makes people different.” One who sees a person who is blind or lame, or who is covered with sores recites the blessing, “Blessed are You, Lord our God, King of the Universe, Who is a righteous judge.” But if they were born that way (with the disability), one says, “... Who makes people different.” (Babylonian Talmud, Berakot 58b)

Powerful stuff.

So I just went back and reviewed all the coursework and blackboard responses (it was an online class) relating to the discussion about these two blessings. Shortly after I took this class, Sam's class was assigned to do their own wrestling with certain blessings, and his friend T got this set. So I had the privilege of discussing it with her, too.

So, my take on this: These blessings acknowledge a few key things about people.
- Every person is created In G-d's Image, and is unique and special.
- Every person, no matter how "flawed", is important in this world.
- It is Human Nature to stare at things that strike us as unusual.

Ok, stop there. Why do we stare? Because we automatically are drawn to notice things that are not part of our normal environment. Why? Well, go back a few million years, and consider the Fight or Flight response. The only ones who survived were the ones who could notice and deal with danger.

But people with differences are not a danger to me, right?

Right, but let the evolutionary process flow, and consider that maybe in the past, someone stronger or bigger than you - someone different from you - might indeed be a danger.

Moving forward in time:

So why do I have to say a blessing when I see someone with a difference?

To acknowledge that normal human reaction to stare, and to frame it within an appreciation of G-d's creation.

We're gonna stare, might as well say a blessing about it!

Why are there two different blessings?

The first is to be used when the difference is "natural", created by G-d. The second is to acknowledge that "stuff happens" in our lives (accidents, illnesses) and G-d is still involved in the process of our development. (The same blessing, "...the righteous judge" is also said when you hear about a death.)

BUT...

When do you say these blessings? What makes you NOTICE someone who is different from your version of normal?

Would I have to say the first blessing every time I saw my daughter? Every time I see someone at shul who uses a cane or walker? Would my friend Tammy (see blog post above) have to say it every time she changed her son's trach?

NO!

These people in our lives are not DIFFERENT to us. They are a normal part of our lives. And that might extend to our reactions beyond our own circle of friends.

I don't know many people who need to use wheelchairs, but I do know some. I don't see them every day. But when I do see them, I don't notice the wheelchair.

But I know fewer people missing a limb. That still catches my attention. And perhaps the first time I see such a person after a long time, I should probably say the blessing ("ah, how do you know whether it was from birth or happened after?!" I don't. Just guess.)

People in our circle are used to seeing Sofia. She is not Different, any more than Micah or Sam is Different, in their eyes. So maybe when they see the adults at the local supermarket who have Down syndrome, they no longer see those people as Different either, but rather as someone individual and unique who looks a little like Sofia.

But certainly there are many people who live in very limited worlds. Who ONLY see people who are JUST LIKE THEM. Who cannot see clearly that every person is unique and different and wonderful and important in their own way.

I think I would say a blessing on seeing THOSE people!

(Ah, thanks, Tammy, for giving me something of content to write about!)

Tuesday, March 22, 2011

I miss writing and musing

I realize that my posts in the past few months have mostly been more like reports from The Home Front (sounds sort of like Colonel Klink on Hogan's Heroes, threatening to send someone to The Russian Front). I have not had much chance to muse.

I have, actually, mused quite a bit, but mostly while I am driving. And I have not yet figured out how to get my brain to record the wonderful posts I compose whilst bouncing around Metrowest in my very loud and clunky minivan. So many of the profound thoughts I have had over the past few months are lost, never to be shared with you, my handful of readers (and friends!).

But I'm just certain that I have thought about all sorts of things: mother-daughter relationships, friendship, Inclusion, the uniqueness of each of my children, the beauty that is sometimes hard to find in every person but really is there if you look hard enough, the way my husband thinks that every car mechanic in the world is just WRONG when they tell me to fix something on my car. Or really good recipes.

That sort'a stuff.

I did come up with a simple dish last night, that not only did Micah actually eat, but Sofia had seconds and Sam had thirds! So I will blog it, for posterity (and hopefully I'll remember I put it here and make it again)

3 potatoes, peeled and diced
3 large parsnips, peeled and sliced
1 large carrot, peeled and sliced (carrot & parsnip from our Winter Share at the farm)

Boil these three veggies until soft. Mash, adding enough pareve margarine to keep it moist.
(I made the mash on Sunday and put it in the refrigerator.)

1 lb ground beef
1 onion, chopped
some olive oil, and whatever spices you like (I only used salt, pepper & garlic powder)

Saute the onion and then add the meat to the frying pan to brown.

Put the mash mix into a square baking pan, smooth it out to fill the pan. Dump the meat mix on top, spread like frosting.

Put in hot over (I think I did 375) for about 30 minutes.

YUM!

Served this with cold roasted beets (also a farm share item - David insisted I start cleaning out the refrigerator!).

G'night!

Sunday, March 20, 2011

Purim Pictures

Sofia as Minnie Mouse
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The shoes were too tight, and the hat only lasted through the chapel reading, but she was very pretty on the bimah:
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With the rabbi, whom she adores:
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Getting comfy on the chair:
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Oh, and me, in my sari:
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And reading last night:
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Happy Purim

It was a very long and difficult week since my last post, but it is finally starting to get better.

Wednesday, I really needed the Girls' Night Out, since I was dealing with some stuff between two friends (glad to say it finally worked out ok) and Micah came home in a miserable mood. And of course he would not tell me what was wrong. I finally dragged out of him the names of two children he was angry at.

Oh, and Sofia had a melt-down during her gymnastics class too. I was REALLY glad when the babysitter arrived!

Thursday morning, I dropped the boys at school late, because Micah had another melt down at home. He was VERY ANGRY at something, but would not tell me what. Got to school and had a long talk with a few teachers. Fortunately he had calmed down after a few minutes. I left to do some grocery shopping for Sam's class dinner (they had an overnight at the Museum of Science, and were going to eat dinner at school first).

Got the groceries back to school, saw Micah again, and left to settle in at Starbucks and do my own stuff. Only to get a call from the school nurse, who had BOTH boys in her office. Sam had forgotten his lunch AND had forgotten to eat breakfast (he had told me he was going to eat in the car), and Micah ...it turns out....had a bump on his head from being knocked down on the playground the day before! Which he had never mentioned!

Grrr. Thankfully my sitter could bring Sam's lunchbox after she dropped off Sofia, so I got him a snack and headed back to school, for more discussions. But by then Micah was at least happier. And I was exhausted, mentally and physically.

Thursday evening was very nice, because it was only me, Micah and Sofia (Sam was at the overnight and David had a D.A.D.S. meeting). We had a lovely and somewhat civilized meal at our sushi place. Sofia and I went to sleep early and Micah read until David got home.

Friday was busy but better. I managed to get to the gym three times this week - which also meant that my body HURT! But in a mostly good way. I worked a bit with one of the trainers in the morning to get some better stretches.

Sam went right to sleep after school - they had a good time at the museum but did not get much sleep and had very little time to eat lunch, so he was tired and hungry. Micah's friend came home with us, and that kid's family joined us for dinner along with another friend. Very nice evening.

Yesterday was long. I had to be out of the house by 7am to meet my mother at the DCU Center in Worcester (used to be the Centrum) for the Mass Down Syndrome Congress annual convention. I had fun seeing my friends and watching all the gorgeous babies, but the speakers were just ok. My mom and I went to different sessions each break-out, and she met up with a new grandma that I had put her in touch with a few months ago. First session I went to the Educator's Forum and listened to a really good speaker talk about Inclusion. It was a good speech but I realized that the day school already does a good job of Inclusion and any school that doesn't do this is horrible and way behind the times!

The second session I tried the speech on Behavior but I'd already heard it (and it was very basic parenting stuff) and I dipped in on the Total Communication that my mom went to , but it was for augmentative speech which Sofia doesn't need. Lunch was long, and my leg kept going numb so I got up and walked around again in the hall. Got to do some shopping, too, from the cool vendors. I got a really lovely necklace, and my mom bought me a DS bracelet I have been wanting.

So it was a long day. We got home around 5:00, shortly after David and Sam got home from a day of skiing. My dad had stayed to watch Micah and Sofia (but apparently he did not do much with them? Kind'a weird. Micah had called me mid-afternoon complaining he was bored!).

Got pizza for all (made GF pizza for Sofia) and then I got into my costume - a real sari from India - and went to shul for the Purim Megillah reading. I ended up going alone. David and Sam were totally exhausted, my parents were exhausted and wanted to go home, and I was going to read so I couldn't watch Sofia and Micah. So I went solo.

I'm not a big fan of the evening reading. The Rabbi and Cantor lead the Family Service in the sanctuary, which is huge and loud and full of kids and shtick. This other guy leads the Adult Service up in the large classroom. I appreciate hearing all the talented readers, but I really don't have a lot of patience for the guy who runs the service - he's a "personality" in our shul - and it exhausted me to be there. I left as soon as I was done reading.

This morning we had a less than stellar wake-up. Around 5am, David and I jump awake to the sound of "bumpety bump thump thump" as Sofia TUMBLED down the stairs (someone had left the gate open!). Fortunately, the child is made of jello and rubber. She was fine. I think David got more bruised sliding down after her! But it was very scary.

We did get back to sleep for a while, and then raced to get back to shul for the morning reading in the chapel. Micah came with me, and of course David arrived with the other two right after I finished my chapter :( But Micah got to be Gabbai for another chapter, so he was happy.

Got Sofia into her costume, and took her into the Family Service in the sanctuary. Sofia LOVES our rabbi, and just wants to be with him. Which was good - he and the cantor's wife (who is also a rabbi) were acting out the story of Purim, and I think Sofia got more into the story because she spent the entire show ON the bimah! Very cute.

Then Purim Carnival. Mayhem. Sofia had a little fun and a good lunch, but then got tired and overwhelmed. David took her home, and I finally dragged the boys out a few minutes later. Micah kept getting put "In Jail", but actually stole the jail tickets to get himself out! When we found out, we put him back in jail AND made him pay a fine by putting not only the stolen tickets but also his own tickets into the pot.

So now we are home. Sam is playing with his friend, Micah and Sofia are watching Shrek 3. David is at work, and I'm going to take a rest.

Wednesday, March 16, 2011

Active Sense of Injustice

I got to hear Leonard Fein speak last night, at an event for donors to the day school. Really cool. His grandson is in Micah's class. The quote in my title was part of his speech.

Let's see...

Micah did an AWESOME job reading Torah on Saturday! The kid really blows me away, he is so calm about everything.

After services, he went home with friends. The three 9 year old boys were trying to convince the host mom and I that they should be able to walk home alone - "Together we are like a 27 year old!".

Saturday night Sam had a party, and I picked Micah up from the house nearby, so got to visit with those parents, too.

Sunday I took Sofia to a birthday party at Chuckie Cheese. A special ring of Hell. And I had a migraine!

We went into Needham for kosher Chinese food (yum!), but next time either we don't take the kids, or we don't take David, or we do take-out. David does not have a lot of patience for the kids in a restaurant. Not that they are badly behaved - they are actually very well behaved - but they order more than they can actually eat, and he gets frustrated with waste. Not that anything went to waste, since the leftovers were delicious!

Monday morning I hung out with Sofia waiting for the Sears repair guy to see the microwave. Now we wait until next week when he brings a new control panel to install.

While we were home, Sofia watched "Mamma Mia" for the millionth time. I discovered that not only can she sing "Dancing Queen" ("see dat girl"), but she knows all the choreography for "Super Trooper". Very cute.

Yesterday I had a few meetings at school, and spent about an hour browsing Target. Needed a new toaster, and house supplies. Night was out with David at the donor event.

At pick-up for Sofia, I had a good chat with the Sped Cordinator about our request for more Speech. She understood, and will discuss with the Speech Path.

At the donor event I got to talk to the director of marketing for Gateways, about our mutual excitement with getting MWJDS ready for Sofia!

Tonight, Girl's Night Out. YEAH!

Friday, March 11, 2011

Just so much going on

It's been an insane week, more so than usual.

Micah stayed home sick on Tuesday. At least i had a sitter in the morning, so I was able to do my errands. Took Micah to pediatrician - strep was negative, but very stuffy nose and sore throat. So we did not go to tae kwan do that evening, just relaxed. David came home from a week and a half in California at about 1am. Very glad to see him.

Also got Sofia's IEP testing reports. Hard to read. They are very dry and data-ful. I gave out copies to the folks in the day school. The HOS, who has a grown son with DS, got two pages into the report and then called me into her office. She was very upset by the report. "Where is the lead paragraph about the child's strengths?!" I appreciated her being upset. I knew that the "good stuff" was buried deeper into the report, but indeed, it is difficult to read all the negatives first.

Wednesday was THE day. Insane, indeed. First, drive the boys to school, and attend to meet one of the candidates for Head of School (while trying to keep Sofia occupied).

Then a quick trip for groceries, a quick stop to unload them, and pick up Sofia's friend H.

Then take both girls BACK to the boys' school, to meet their preschool teacher and Sped Coordinator, who were observing the day school's kindergarten class. That was interesting. I was glad to have H with us, because in contrast, Sofia did really well! The two girls were playing in the "kitchen" area of the class, but Sofia got interested in what the teacher was talking about with the class, so she sat on the rug with them and chimed in! She even raised her hand and said "My Turn", and added appropriate on-topic comments. I was so proud!

Fed the two girls some lunch in the cafeteria, and got to see the boys. Then raced back to drop them at school. Home for 20 minutes, then back to prechool for THE IEP MEETING!!!

Two and a half hours later...

It was certainly a long meeting, and overall I was satisfied with the basics, although we are going to request more speech. The meeting started with "what is the disability", and a discussion of whether to transition from "Developmental Delay" to "Intellectual Impairment". Since we all agreed that she is certainly still developing, I was able to demand DevDelay, which can be used up until she turns 8 years old.

I always approach the IEP meeting like this: "Let's pretend that we are moving to California next week; what do we need to include in this document so they would know how to work with this child?"

That helps it stay impersonal and focused on the child, rather than on the the school system.

In attendance was a cast of thousands:
- public school Sped Director, preschool teacher, OT, PT, Speech, and Psych
- day school Head of School, Sped Director, and Learning Specialist
- David and me
- my friend who is a professional advocate, and knows Sofia well.

So.

To know Sofia is at very least to be amused and impressed by her. We all agreed that she has made tremendous progress every year in preschool, and with proper support, will continue to exceed all expectations. (I guess - can we "expect" her to exceed expectations?!)

Now it comes down to WHERE.

The day school folk had a lot of questions, but certainly were not able to promise anything. I had invited folks from Gateways, the Jewish Special Needs collaborative, to attend, but they did not get the message until after the IEP. We will have a separate meeting with them soon.

There are many things to consider. The public school Kindergarten teachers, even in the Inclusion classrooms, are not SpEd certified. They recommend only 60 minutes per day of specific Sped service.

The current recommendation stands at:
Speech - 1x30 in class and 2x30 pull out per week. We are asking for more.
OT - 1x30 in and 1x30 out
PT - 2x30 out
SpEd 5x60 in

Whew.

Got out of the meeting at 3:30 - which was only a problem because I was supposed to have picked Micah up at 3:15 to take him to his therapy appointment (which his doctor kindly rescheduled). Got the boys, had a quick meeting with the art teacher about a project i am working on, and met Sofia at gym (taken by H's mother - I love this arrangement!).


Thursday, more running around. Meeting, then massage (yeah!), then another meeting. When I picked up the boys, Micah was a complete melting puddle. We did a quick stop to get his new glasses, and get Sofia and go home. David, however, did not get home again until after midnight.

So this morning he was "grounded" - I told him he was not allowed to leave the house until 10 am, and should sleep as long as possible. When he is away from the office so long, work piles up.

I also left Micah home again today. Poor kid can't stop blowing his nose, and he is very tired. Since Micah and David were both home, the bonus was that I could leave Sofia home while I took Sam to school and had a quick meeting and grocery shopping.

When I got home, I made home-made Wontons for Micah. They came out YUMMY! I'm making crock-pot for tonight, we have 2 families coming over. And Micah is supposed to read Torah again tomorrow in the children's service.

Monday, March 7, 2011

Kvelling again!

Micah read Torah this morning for the first time. It was at All School Tefillah (prayer), which this year we are doing on Rosh Chodesh (the beginning of a new month).

He not only did beautifully, but was surprised with an extra line - there had been some confusion about who was reading what, and fortunately Micah knew the line before what he thought he was doing!



He was so calm!

And I was proud of Sam, since he was acting as Gabbai, the person who calls people up for their honors:

Sunday, March 6, 2011

Poltergeists

We've been having some problems with our appliances this year. In August, the clothes dryer caught fire and had to be removed (by the fire department). A few weeks later, the microwave died, and David and I had a fun time installing the new one.

A couple of weeks ago, the dishwasher washed its last load. New one is on order but not coming in for another week or so.

And now, the new microwave is busted! Repair coming next Monday - poor Sam is in a panic. "How will we eat?!" I explained to him that the machine under the microwave is a perfectly decent stove...

And this evening, I discovered that the dead dishwasher is leaking! So I have to see if the company will come remove it before the new one arrives.

UGH.

Oh, and this week, I discovered that I will need to get a new minivan - the steering column is starting to go, and between that, the needed new muffler, the needed new brakes, the broken power door and the fact that the beastie has over 111,000 miles, it's time to replace it.

Meanwhile, David has been away in California all week, missing out on the fun (and stressing long-distance, which is definitely NOT fun!).

On good news (but still in line with the broken appliance theme), I got my new camera today (since I have three broken ones now). Just in time, since Micah is reading Torah for the first time tomorrow.

Funny thing about that. When Sam read for the first time, back in third grade, i was terribly nervous. As you can hear in the video, my friend and I held our breath through the entire part.

But with Micah, not only am I not nervous, but he's already signed up for his second reading, next Saturday! He's such a quick learner, and so good at Hebrew, it's a breeze for him. I'm very proud of him, but it's wild how his poise and nonchalance are keeping us all so calm.

I had a lot of other things to write about, but now I have forgotten them.