YESH!!

“Yesh” –usually said “YESH!!!!!”- is a Hebrew slang that defies description. The nearest I can think of is “Wow, Right On, Whoopee”, or the like.
The first day of the Sukkos (Succoth) holiday we had very few family members with us, just my unmarried sons in the evening. In contrast, this Saturday two married sons were to show up. However, as the remaining siblings heard that their two brothers were coming, the third married son and the unmarried kids (plus one fiancée) decided not to miss out on the opportunity to spend the weekend together. So, although I could start cooking for the first day of the holiday just a day in advance, yesterday I was already deep into preparations….
Ricki usually asks me on Friday “who” is coming for Shabbas (Saturday), hoping that maybe one of the married couples (ie., someone with a BABY) are coming.When she heard that ALL THREE are coming, she let out a resounding “YESH!!!!!!!!!!!!!!!!!!!!”






[Picture of the decorations in our smaller, more rain-proof sukkah (has a movable roof-cover.) (Picture was taken before the holiday)]

The Truth

Tuesday afternoon, Ricki wanted to avoid study-play with me, so she conveniently went up to the roof patio to play games in the sukkah (Succoth-booth). Her ploy worked, as I really wanted to read, anyway. Studies could wait.
Late that night the long-predicted rain fell. And sukkot (plural of sukkah) are not exactly waterproof. (Actually, our downstairs one does have an emergency rain cover. But not the one on the roof.).
So early on Wednesday morning, Ricki went up to the roof, and came down with the games. “Mom the games were in the rain, They’re wet.”
-“Who on earth would leave toys in the sukkah when rain was expected.?!!?” (As if I didn’t know! Actually, in all fairness, I’m not sure anyone shared the weather report with her…)
-“I did.”

The truth.
Not “I dunno.”
Not her brother.
Acknowledgement of blame.
I think it’s the first time she’s done it. Five minutes later I called her into the room., and praised her, for telling the truth.

Not "wordless" Wednesday- regular post is below!

Special exposure Wednesday




These pictures are again, from our trip to Colorado a year and a half ago. I really have to get out and take some pictures here. (I have some, but they always include people who don't want to be posted on the net....)

An open letter to Mr. “End Down Syndrome”

I have a feeling that you have no realistic view of how independent and “thinking” a regular person with Down syndrome is. Again, my daughter was classified several years ago as having a low range of “mild” retardation, the norm for many children with Down syndrome. But she has had a good education. She is all of 14 years old.
So let me describe just a few minutes of this morning with her.
Ricki got up, bathed, and dressed (with clothes she had set out the evening before), entirely on her own. I pointed out that her vest was a bit crooked, and she changed it. [I made a mental notation that I should spend five minutes teaching her to check her appearance in the mirror after dressing, so that she can catch these mistakes herself.] She went to the kitchen, and seeing that her father had made some rice, took some, added milk, and heated it up in the microwave.
As I entered the area, she said “Mom, you should have some rice! It has calcium!”
-“No thanks, I’ll have my calcium with my coffee with milk.” She looked a bit puzzled. “Ricki, the calcium is in the milk, not the rice.”
“Oh, I see.”
A few minutes later she came to see what I was doing at the computer. She pretended to stick her finger in my coffee, and I remembered that I had not as yet given Ricki her daily dose of Concerta, which helps control Ricki’s ADHD. I smiled to myself, thinking how most of Ricki's problems are related to her ADHD, and not her low I.Q. [I wondered if you, Mr. EDS, would also advocate killing babies with ADHD if it could be detected. If so, maybe life would have been “easier” for their parents, but we would have missed out on a lot of the “doers” of the world.]
Next Ricki saw her new pink dress in the laundry basket. “Oh Mom, is it ready?!!?”
-“Ricki, you are not changing clothes. Today is cooler, save this dress for a warmer day.”
“OK, OK, MOM!! (teenage exasperation…)
I sent her to clean up a bit in the kitchen. Afterwards, she took out a book to read, albeit to an “imaginary friend” (much like a younger child). [Later, on going outside, or when her real friends show up, the imaginary friends disappear.]

Now please tell me.. Where is the “monstrosity” here? The “suffering”?
And to prevent a birth like hers, you would run the VERY risky path of telling parents who they can have a “choice” with, and who you have decided is not worth living?
Who gives you the right to say that my daughter’s life is not worth living?

Beneath the Wings… Beneath the Schach

As always, my holiday treat is to curl up with a book after the meal, and that is exactly what I did. It was an “adventure novel”, but one in which the characters each face their own set of problems, some worse, and some not-so-bad, although no easy thing either. The thing is, that the characters in the novel all open their eyes to their flaws and faulty thinking, the single people get married, and all is well in G-d’s world.
At one point a wife is puzzling over why she has so many tests .And of course it all works out in the end.
Oh, I wish it was like that in real life! (Now I am not talking about Ricki’s Down syndrome. I have long ago accepted that as a part of our lives.) I have enough challenges in my life that if I cared to share them, it could strike someone as a rather fantastic novel. (But these things involve others, so I have no right to “go public” with it.) Unlike the movies, and unlike novels, real life does not wrap up nicely after a short while. People struggle with various burdens that may or may not go away.
So G-d gives us a reminder: The Succoth-booth, topped with its flimsy schach (a covering of leaves, reeds). We are beneath the schach, under G-d’s watchfull eyes. He has His reasons for our tribulations; reasons we may not understand…….but He is with us. We are beneath the wings of His presence.

Gifts

I went out for a few moments yesterday evening to buy some gifts for my grandchildren, for the holiday. I usually buy books, nice laminated ones, an item my sons may not be able to afford. And even though most of these grandchildren speak Yiddish, I insist on buying Hebrew books. I want to push them to be fully bi-lingual, for two reasons. First, I myself do not know Yiddish, and two, being literate in the country’s language is a “must” as far as I am concerned.
One son didn’t like my intended choice of book… he wanted a Yiddish book with a cassette attached, probably the better to keep his daughter occupied. Well, thankfully I didn’t see any, so I got a classic “concepts” book instead. (Not the one he vetoed a different one.) I suspect that I will always view any and all gift purchases for educational value. That has been ingrained by years of buying books and toys for Ricki.(I have virtually amassed a toy/book store at home for her.) And since this book is laminated, and I hope it will last for all of his family, as it grows, so I think that my thinking is not so far off. Thus in the end, I got what I thought was best, not necessarily what the child wanted.
How about you? Do you buy practical or what the child desires?
I wish I had something better to write today, more interesting…. But I will have to stop here, as the day is short and the work is long….
PS. Above is a picture of our Succoth-booth. It is the least decorated we have had in years, partially because of a prediction of rain, and probably a sign as well of my 16 year old’s addiction to computer. His heart was simply not into creating a fancy succah. A pity. Hopefully today I will get him to spruce it up a bit.

The Easy Way

PS. This picture has nothing to do with this post. It is a picture of wild geraniums I took last year in the Rocky Mountains, and which showed up on my desktop this morning. I simply decided to share it with you. (Smile.)

Every morning as I enter the kitchen, I quickly mix up a cup of coffee and put it in the microwave to warm up. As it does, I tackle the few cups and dishes that pop up between 1:00 am and 6:30. My husband is a “night person”, and a few cups found scattered around from the previous evening add to the pile. Usually the time it takes me to wash the glasses and the time of the microwave to warm my coffee pretty well match.
This morning, as I entered the kitchen I was faced with the “problem” (such should be our problems!.....) of NO MICROWAVE. It had been unplugged and removed from the enclosed porch next to the kitchen, as part of the preliminary work of making a Succoth-booth there.
[We usually make two Succoth-booths: one on the roof, and one next to the kitchen. The one on the roof is the large, major one, and the one by the kitchen is for people who don’t want to climb up a floor just to drink a cup of coffee, as well as for extra sleeping space.]
Anyway, so I had to warm the water for my daily coffee “fix” with an electric kettle. That meant getting it out, and plugging it in. Oh, so much bother!
Isn’t it amazing how quickly we can get used to certain conveniences?
I remember how several years ago, when my in-laws came to visit, they stayed in a place not too near and not too far from us. They graciously provided us with money for taxis to and from their hotel in the city. When they left, I realized with shock as I boarded a bus to go into town, how quickly I had come to expect the luxury of a taxi. The taxi was three times as fast and 10 times the price. But I had become used to it, and it took a few times of riding the bus to return to the state that I felt it was “normal” to use the slower mode of transportation.
So why should it surprise us so deeply when our children opt for the “easy way” out? Why do half-done dishes, shoes tossed in the direction of a closet (rather than put inside), or a half- sentence of speech when we were hoping for a greater linguistic attainment, surprise us?
Our job is to teach the pleasure of a job well done, the merit of doing something in the proper way, and the happiness of a well-deserved compliment.

I don't know about anyone else.
Do you ever get sick of these photo montages of kids with Down syndrome?
They are almost always of babies and young children (rarely with adults or teens--)and often terribly long. An overkill. Which is why I liked the "R word-respect" blurb; it had adults, and also was short and to the point),

I mean, I suppose new parents need this, but I do not believe in deifying kids with Down syndrome. They are PEOPLE (and sometimes ornery ones, at that!).....

I suspect that those who worship them as "little angels" don't always see their individuality. If you say "Children like these are always loving....", you are not treating them as PEOPLE.

Busy, Busy….

I wish I had more time to get things done before the Sukkos holiday. Ricki is home from school today, and is “helping” (to keep me busy, for sure!). So far she has examined the new scenter in the bath (spilling half of it, making the bath VERY vanilla-y!).
But I AM waiting for the holiday. I imagine (after a meal, doing the dishes, etc,) curling up with a good book, and having time with the grandchildren. Sukkos is my favorite holiday. We eat outdoors in a booth (unless it rains…); we have time with the family and to enjoy the fall weather.
And mommy has a week off from preparing school stuff for Ricki. GREAT!!!

Motzai Yom Kippur Reflections

Yom Kippur is over, and the Sukkos festival is a few short days (5, to be exact) ahead. I wish my married kids would let me know which days of the holiday they plan to come for. (One has, two haven’t.). I usually cook fancier for the festivals than for Shabbas (ie., I make desert…), and I like to prepare what I know the arriving guests like. So it would help to know in advance.
Guess its time to make some phone calls…..anyway, I have to call my daughters –in-law and asked how they fasted.
Meanwhile, everyone I talked to had an easy fast. Perhaps because it was cooler than usual.

Meantime, it is already 4 hours since the end of the fast. Everyone has eaten; I have to go wash the dishes. Outside I hear a few hammer blows as the younger fathers of the neighborhood start working on their Sukkoth-booths. The air has a crisp fall edge to it. The skies are clear except for a few small clouds. Happy sounds come from nearby homes: everyone is glad and relieved that the fast is finished; we are looking ahead to Sukkos.
This year the prayers for substance had a stronger ring. The illusion that “I am safe, I have money in the bank” has been seen to be an effervescent dream-wish. There never is a guarantee of prosperity; this year it was easier to feel it. There is so much we need to pray for, and like a beggar with so few good deeds, and not nearly enough “hard cash” of true repentance, I came knocking at G-d’s door with a whole list of requests. But the essence of the Jew, and perhaps much of mankind, is to believe in the kindness and mercy of the Creator. So amazingly, after the fast, everyone is positive, confident, and hopeful that he was sealed for a “good year”.

About as I Expected…

Remember my September 19 post on the Anti- down-syndrome site? I had written them a comment, similar to my post, and they didn’t post my reply (moderation in effect).

I was actually very civil in my post.

. But since the didn’t make any more posts of their own, I fiqured that maybe.. maybe… maybe they hadn’t been to the blog and hadn’t seen my reply. But I suspected that it was not so. Well, they have posted again their hateful message, and my reply to the last post was not approved. And I am blocked from posting a reply..
About as I expected…..the *&%*#& cowards!

PS. Yom Kippur passed quietly; Ricki fasted about 90% (took a few lugs of water….). Not bad!

Rerun

I am supper-busy with the uppcoming fast/holidays/DD wedding, that I decided today to do a rerun. Probably few of you have read my posts from last November, so I picked out a good one to "rerun". Hope you enjoy!

"A GOOD WEEK"
On Saturday night, we make the "havdallah" ceremony, and with a whiff of fragrant spices we usher in a new week. "Have a good week!" we wish each other, as one son dashes out to his pizza delivery job, and my husband heads to the kitchen to do the pile of dishes that has built up over Shabbas (Saturday). I call a mildly protesting Ricki to come do some homework, and study for Monday's science test. Later in the evening I will turn on the computer, wondering (as I always do on Saturday night) if the globe managed to stay relatively sane over Shabbas.
Maybe this half-expectation that it is nigh-miraculous if there were no calamities over the last 25 hours (whether natural or man-made) is a post- 9/11 state of thinking. I know that for me this feeling that the world is a bit fragile has intensified since then.
However, is you know any history, than you know that man's cruelty to man has not increased over time, but rather the ability of a small group to wreck damage far out of proportion to their number. Man, since Cain and Abel, has used violence towards others as a tool. (Anyone who thinks that we have more of this today, should pursue Barbara Tuchman's book, A Distant Mirror, on the fourteenth century.)
Today, we have so many movements to stop violence. We teach non-bullying in schools, have peace rallies, etc., yet it is questionable how much any of this is helping. Perhaps it seems that we have an overly violent world because (as I mentioned above), even small miniscule minorities can terrorize large groups of people. But I think that even those of us who think of ourselves as "decent" people, are often only "decent" if it is convenient.
For example, in the very interesting book Choosing Naia, the opinion of certain therapists is that Down syndrome is a preventable disability (i.e., one can abort), and is a drain on the economy. I recently talked to a mother who was told by her daughter's therapists basically the same line, and that her daughter anyway won't "amount to much". Is it any wonder that she stopped taking her child to therapy? (Which of course is not a good way for her daughter to "amount to anything" either.)
The bottom line is, how much are we willing to go beyond our comfort zone, to help others ? To finance programs? Two months after today's headlines about the treatment of the mentally disabled in Serbia, how many of us will have done even one little thing about it? Or about guaranteeing the rights of the mentally challenged in our area? Or will we just shake our head at how dreadful it is, as we go back to our regular pursuits without a second thought?

The Bookstore’s New Employee

I am a reading addict, with no plans to entirely rid myself of the habit. So I am sure that it comes as no surprise to you that the gift I always request for holidays is not white desert wine, a new outfit, or even chocolate: only BOOKS. So near to any holiday -near enough that I think I can hold off reading till the holiday arrives—you’ll find me in the bookstore one unexpected, busy morning.
So with Yom Kippur coming up, and after that a frenzied few days till the Sukkos holidays, I decided to visit the bookstore while I still had a reasonable chance of fitting it in.
The bookstore I frequent is one of my favorite places, and not just because of the books. The proprietor told me once that he has a copy of the Hebrew translation of Babies with Down Syndrome, and I understood that in some way the topic was close to his heart… the child of a relative, or the like. It showed in his behavior.
He has always been great with Ricki, ignoring any misbehavior on her part, and speaking to her without any condescending tones. Recently he even gave me a children’s encyclopedia at cost price when I said it would help Ricki in school.
So today I was pleasantly pleased to see his new worker: a young woman with mental disability was at the desk, patiently applying his store’s sticker to the inside cover of new books. (He has such a turnover that this is probably at least a half-time job.) She put one of the newly-stickered books on my pile of intended purchases, so I moved them. She quickly said “I was only putting it there for a minute.” I realized that maybe she thought I didn’t want her touching my books, so I said “I don’t want to interfere in your work space..”
Such a simple idea for a job. Apparently the flux of people around her helps make the job a bit less boring, but it IS a job that was done by the proprietor until now. I hope I can someday find something good for Ricki(better than sticking stickers); I hope her rough-edged personality will smooth off by then, to help make it possible….

story cards-try this Tuesday

To help kids tell a story:
make some cards with photos/ pictures / signs for:

people your child knows
places they go
activities they do there
transportation
feeling faces (happy/sad/ surprised/ hot/ ill/ cold
weather
days of week

Then, after going somewhere, pick out cards which match what you did, and use them as prompts to help them tell the "story" of what they did

Housework vs. Spirituality

We are barely three days away from the holiest day of the Jewish year, Yom Kippur (the Day of Atonement). It is a day of fasting, and trying to correct our failings. This week is part of that process… the days leading up to the fast day are to be marked with introspection, asking forgiveness and making amends .
And here is Rickismom, completely absorbed in planning what I will cook for the upcoming Sukkot holidays, so I can send my son shopping at the supermarket tomorrow. In addition I am busy with laundry, preparing Ricki’s study materials, and wondering how on earth will I manage to sew a dress for Ricki for the holidays, especially since my bathroom porch is still in upheaval from the repairs, and is begging for me to “make order”. And tapping away at the side of my brain are a few valid atonement thoughts: “Less time reading blogs would have meant not getting so backlogged with work.”
“You know you have to work harder in your relationship with ‘X’….”
And so, the question often arises: How spiritually inclined can I be when I am caught up in the quicksand of everyday stuff?

Actually, it is not a contradiction. We all admire the humanitarian do-gooders of the world. But I suspect that we forget that doing “good” is usually a nitty-gritty series of tasks like preparing supper, and clothing those who need it. Is it any less of a good deed because it is for my family?

And, besides, if we want to reform ourselves, that honest voice pecking at the side of our brains as we wash the dishes is usually not too far off….

PS on Politics

The behavior of the politicians- the name calling, lying, insinuations-- just has we wondering how they ever dreampt up that these people are supposed to be our leaders!?!?!!

Ricki’s Shopping Expedition

Ricki occasionally gets a bit of loose change from me as spending money, or as a “prize”. She has always saved it away, and recently her brother and I counted the 10-agorot (2-cent) coins, and the few larger pieces. She had over$10 (ie., 40 shekels) in all.
So, with my encouragement, she went on her own to the little trinkets store next door. Twenty minutes later she came back with a small cheap computer game. I fetched from my closet some matching batteries, and discovered that the item did not work. I sent her back, explaining an important lesson: If you buy something and it doesn’t work, you return it. You are not going to be anybody’s sucker (intentional or not). The store happily exchanged it for a different item. It turned out that this item was broken. (I know the store owners, who are people that appreciate Ricki very much. The shoddy stuff was not given to her on purpose, it was bad luck. In fact, she has made small purchases there often. This was simply the first time she had gone with the sum of over a dollar.) I sent her back, but the store was closed for the weekend.
So on the next open day, I sent Ricki back, but with her 16 year-old brother as an “advisor”. I want her to have as much independence as possible, but I don’t want to drive the store owners crazy, either.
As I looked at this, I realized that teaching someone to shop is complicated:
- how to choose what to buy
- handling money
- returning objects
- realizing what has (needs) batteries, and calculating that into the purchase
- good deal/ bad deal… and calculating comparative/reasonable costs

Gee, I get “fuzzy mind” “I don’t want to deal with this” just thinking of the amount of stuff she will need to learn. I suspect that she may always be a bit dependent on the reasonableness of store owners… a dependency I would like to avoid. I’m not really sure yet how we will get there.

Hanging up the Laundry

As I mention in my last post, Ricki hangs laundry. Mind you, as with many other tasks that she attempts, its not 100% yet.
- First, any underwear in the basket I hide and hang later on my own, so that I can hang it on an “inside” line, not the outermost one in full public view. I’ll teach her that once she has basic “hanging” down pat.
-Perhaps in an effort to avoid dropping laundry, she tends to over-pin it… too many pins for each item.
-Her biggest problem so far is that she has a tendency to remove hung laundry before it is dry, excited at the prospect of taking the laundry down.
And tonight, I discovered why we suddenly have so few clothes pins: as she removed the still-damp floor mop rags she had hung barely an hour before, I saw her toss the pin downstairs……….

I think some intensive teaching is in order. I just hope she’s in the mood to listen…..

Adjusting to a “Down Syndrome” Diagnosis

Over at “Welcome to Illinois” there is an excellent post about not putting too much emphasis on the diagnosis. I would like to add what I think is a very pertinent point.
Many times when our children with Down syndrome are young, we have moments of despair, worry, and wondering how much Down syndrome will affect our child. At times, when we see the difference between the child and his “normal” peers, it can lead to “low-feelings”. This is NORMAL. The important thing is to try not to stay immersed in negative “mud” for too long.

(Now, if you, reader, are a “Oh I just Love Down syndrome” and “Iwould never change my child in the least, I am sorry, but I was NOT there as a new parent. I loved my daughter, and choose to ignore the “risks”, but I was not jumping up and down with joy over the diagnosis….)

But my real point is this. As your child grows, he becomes so much more than a “child with Down syndrome”. The child’s personality, actions, and thoughts become so much more important. I won’t say that sometimes I don’t get exasperated with Ricki (as I do with my other children as well…). I won’t say that the occasional fleeting thought of “Gee, I wish to G-d that she didn’t have DS” doesn’t flash through my mind. It does.

But I am much more aware of:
- her playing “teacher” and reading to her “students” a book
- her hanging the laundry
- her insistence on doing a piece of too-hard homework because the teacher said it was homework
- her laughing at a joke
- her insistence that her brother not DARE to bring his dog to our home (she’s scared)
- her pleasure to discover a gift of jewelry

These things OH SO MUCH make her seem to be what she IS: a teenage girl!

Can I Change?

The Jewish New Year has come and gone. Many people have made resolutions for the upcoming year. I haven’t yet, and I’m not so sure why not. Is it because I’ve been too busy to think? Or perhaps because honest appraisal of my life will lead to realizations that I must make changes in areas I prefer NOT to change? Or is it because I am already questioning my ability to make any meaningful changes at this point in my life?

I suspect that it is a bit of them all…..

One change I AM making. I am cutting out a LOT of the blogs that I follow. I enjoy them. But I do not have the time to read several blogs daily. So if you see that I stopped following your blog, please DON’T be insulted. If you ever have anything really interesting, or something you would like my comment on, just tag the link on to a comment here, and (without promising) I will try and check it out.