Monthly Archives: November 2012

Just Like You – video

This is a fifteen minute video made by three typical kids and their three friends with Trisomy 21.  In it, they share about the common issues to help others understand what Trisomy 21 is, and how it affects their friends.  Though this was geared to be by kids, for kids, it’s suitable for adults as well as kids of all ages.  I think it would be great for parents to watch this with their children so they have an understanding when they see someone with Down syndrome about what to expect – and the message is, we’re all much more similar than we are different.

 

I really enjoyed this video!  Take a few minutes to watch it, and let me know what you think – was this informative?  Did you learn something new, or get a different perspective on Down syndrome?

Avivah

Bas mitzva preparations begin

Tonight we sat down to plan for our upcoming bas mitzva!

My dd turned twelve on Sukkos, but things were so busy that we decided to push off the actual party for a few days.  However, due to delays in getting the place we wanted booked, it kept getting pushed off more and more.  When there’s something that needs to be done, my general approach is to do it as soon as possible.  The way I see it is, there’s always more to do and there’s usually not going to be a better time, so I might as well get things done as quickly as possible so they don’t cause mental clutter.

We originally were aiming for Saturday night but booking the location was getting too drawn out – we couldn’t get hold of them, and then when we did we had to call again and again, and then it wasn’t available for when we wanted it – and a few days ago we set the date for a week from now.   A nice thing about switching to a Sunday evening is the set-up will be much easier, since we’ll have more time prior to when things begin to get everything done.  It was worth waiting to be able to rent this place since it’s close to us, a very reasonable price, and has the space that we’ll need.

We wrote up a basic menu plan tonight, and that leaves the next five days to do the shopping, cooking, baking, and organizing. Dh will take care of the invitation either today or tomorrow – that sounds really late, I know, but apparently here it’s typical to give the invitations out just a few days before.  We’re planning a slide show, buffet dinner, and music/dancing.  I don’t know what to do about the bas mitzva speech that the girl usually gives – dd12 doesn’t speak Hebrew yet and her classmates don’t speak English, and a week is way too short a time for her to memorize it in Hebrew.  This will be a much bigger crowd than either of my other girls had for their bas mitzva, since dd12 is in a class of 34, and she’s more hesitant about speaking publicly than either of them were.  I’ll probably speak as well so I’ll have to find some time to put my thoughts together – I don’t mind speaking in Hebrew though I might make some grammatical mistakes but I would like my daughter to understand what I’m saying!  So that’s something else that I have to think about how to handle.

Things are never quiet around here, but this week will be a bit busier than usual!

Avivah

 

Hearing test results – great!

Before he was released from the NICU after birth, Yirmiyahu was given two hearing tests.  He passed one but failed the second one, and though the technician said that him squirming  might have been the cause of the poor test results, we needed to have another test done to check it out.

It was quite a wait from the time I made the appointment until when we were seen, and a couple of days ago we went to our appointment at the hospital where he was born to have the testing done.  I like when I can go back to somewhere familiar, but an 8 am appointment means I need to be on a 6 am bus, so it makes for an early morning.

The instructions were not to feed him or let him sleep for two hours prior to the test, which wasn’t very realistic for such a young infant.  I tried to give him a full bottle at 5:30 am but he was way too sleepy for that, and travelling by bus in a baby wrap is a good recipe for sound sleep!  While I was waiting to have the test done, I gave him the last couple of ounces in his bottle, and the technician going by chided me.  I told her, he can either be sleepy or hungry but he can’t be both.  It ended up working out well since he had to swallow a syringe full of syrup to make him fall asleep, which he hated the taste of.  I got it into him by giving a little squirt from the syringe, then quickly letting him drink from the bottle to wash it down – we did this  a few times until he finished the syrup.  Even the technician approved!

Once he was asleep, the testing went really quickly.  While I held him in my lap, electrodes were attached to his forehead and above his ears, a tiny microphone inserted into his ear, and then different sounds were made while the computer recorded his brain’s response to the sounds.  Amazing what technology makes possible!

I was delighted when the doctor finished the test and told me Yirmiyahu’s test results were perfect!  I know that hearing is an area of concern for a lot of babies with T21 so this was really a relief.  When I took him for an ultrasound on some internal organs a few weeks ago I was told everything was fine – and then I showed the results to our pediatrician – she told me it wasn’t reassuring for a technician to say nothing was there when something had been there before, so I need to take him to yet another city to have a repeat ultrasound done in a different office.  But this time, the results are conclusive and there’s no need to retake the test.   We have six months before we need to do another hearing test, and I’m so happy for the good news!

Avivah

Great family card game – Blink!

Six months ago, I ordered a couple of games from Amazon and had them sent to my mother so she could include them in her lift. My ds5 came home from a visit to her home today with one of them (they still have boxes that are getting unpacked).

I had never played this game and bought it based on the description. When they saw it, a few of the kids said they had played it at friends and really enjoyed it. It’s a card game called Blink, and I got it because I wanted something that kids of different ages could play together, that was easy to learn, fun, and didn’t take too long. (I don’t have the patience for long detailed instructions to learn new games – my kids know, either explain it to me fast if you want me to play with you, or I won’t play – too many other things demand my attention.)

This was so great – it takes about thirty seconds to learn to play, and each game lasts maybe a minute or two. My kind of game! I played with ds6, then ds5, then with both of them, then with dd12, then ds10 – and we all had fun! The basic idea is that you put down cards that have a feature that matches the card on the table – color, number, or shape – it kind of reminds me of SET (another fantastic family card game) but it moves super fast. So I consider it educational in addition to being fun!

I bought this with the intention for it to be a family Chanukah present, but since my mother didn’t know that was my plan, she gave it to ds5 to give to me, and ds6 opened it before it got to me. But we’re all enjoying having it now!

What games does your family enjoy?  

Avivah

Is it really easier to send your young children to school than to keep them home with you?

Over the years I was homeschooling, parents often told me that they could never do what I did. It’s just so hard to homeschool rather than sending your children to school, was the sentiment. It’s so much easier to let the teachers deal with them than to keep them with you all day.

For years, I told people that the idea that sending your kids to school was easier was a fallacy. That the more time you spend with your children, the more pleasant they are to be around, the more tuned in you are to each other, and a positive spiral is created. You want to create a negative spiral? Do the opposite.

Well, let me tell you, after over a year of having my children in school, I can tell you that I was right. It takes much, much more energy to raise your kids well when they’re in school all day. They come home tired and uptight, and you get to spend a portion of the time you have with your kids remediating the behaviors that they picked up during their school hours. Then once you’ve emotionally reclaimed them, you put them to bed, send them off to school, and get to start all over the next day. There’s just so much time spent putting out fires and doing damage control.

You want a lovely example of this? Two days ago I went to pick up ds5 from kindergarten. That particular day I happened to be alone – usually the baby is with me – so it was just the two of us walking together on a beautiful day. As we walked along, I said something innocuous, but it annoyed him. So he told me not to say that (no, he didn’t request), and then a minute later, said to me in a demanding voice in which he was clearly trying to provoke me, “Should I tell you to shut up?” Never, ever, have I had a child speak to me like this, and if it had happened, it would have happened once and that would have been the end of it. Though this was the first time that he ever said this, less than pleasant means of expressing himself are becoming too common, and the relationship has to shored up before any correction can be effectively employed. This is what I mean about having to spend time remediating negative behaviors.

Today ds5 and ds3 stayed home with me. Fridays are a busy time at but they were around as I did whatever I had to do – they put Yirmiyahu on the crawling track a couple of times, we read a couple of books, they shaped challah dough, and then the two of them took a bath together. I let them play in the tub for a while, and then they got dressed for Shabbos. While they were getting dressed, ds5 told me, “You’re a cute mommy”. Then he put it to a tune and started singing it again and again. Then he put it to partial Hebrew, ds3 started singing along with him, and then they started singing to each other how cute the other one was. So sweet!

Right now, ds5 is busy slicing up cucumbers for cucumber salad while I write. He’s been constructively busy all morning, and emotionally engaged in a positive way with me throughout this time. I didn’t hear one even slightly negative thing all day, no negative behaviors that are typical on school days – I’m the same parent , these are the same children – but the behavior is totally different from one day to the next, and the big difference is going to school versus staying at home.

Avivah