The Earth is the Lord's

Tuesday and Wednesday are Rosh HaShana (Jewish New Year). I will hopefully be posting regularly after then.
SHANA TOVA
Sorry to any readers who don't belief in G-d. I do. I "blame" my parents.Which is ironic, as they are not "believers". But they brought me to the mountains. There I realized that this could not be an "accident". I remain in awe of H-s hanywork.

Sorry!

Sorry! But I am very behind in my work, and holidays are coming next week, so I may not be posting for a few days. ... Decided my sanity is more important than the blog......

Ricki’s Teshuva (Repentance), and the Nice Lady in the Mall

If you have been reading here for over a month, you may remember that near the end of August, Ricki ran away from me in a small shopping mall. (If you are a new reader, see original post here.)
Ricki had a chance to “replay” the incident yesterday. We had to go to the eye doctor for a post-surgery check-up (his office is right by this small mall), and I wanted to go into the stores after this appointment to see if I could find a few things we need for the almost finished (GRIN GRIN) shower room (which is being overhauled, see posts from September 5,7,8).
Our sages tell us that true repentance is being faced with the same situation you failed in, and doing properly the next time. But we don’t always have the opportunity to make such a correction. Ricky did.
Before entering, I spoke with her about my expectations regarding her behavior. For the first 10 minutes or so, she acted wildly, not listening, and grabbing things. I caught her, and threatened concrete “consequences” for continued misbehavior. THAT worked, and she calmed down. So we were able to do some shopping, and Ricki had “experience” in behaving in a mall.
As we were leaving, we saw several tables with various trinkets for sale near the door. One, with flashing lights, perked Ricki’s curiosity. As she went zooming over to the table, the saleslady smiled. She patiently showed each thing to Ricki, explaining how to turn the lights on and off, etc. We bought a small item. I even told the lady “You were so nice, I’m writing you into my blog tomorrow, I promise.”
Then as we passed the last table, Ricki touched something and the proprietor panicked. She urged me to restrain Ricki, who was really not doing anything terrible, she was just examining the items. She roughly told Ricki “It’s not for you” when Ricki asked what the item was for. So I decided (perhaps still enwrapped from the “glow” of our previous saleslady), that I would just ignore the hysterics of the woman. I certainly didn’t tell Ricki off, as she was really not doing anything wrong, and was handling the merchandise* carefully enough. I calmly explained what the items were, and told Ricki to put it back as we needed to “get going”.
And I really didn’t mind the second lady, because the first one was so nice.

*Yes, breakable merchandise, which I would pay for if broken
PS. By the way, the doctor was quite satisfied with the results of the surgery.(So far, he has to recheck her in a month and a half.) There still is a bit of cross-eyedness, but it is MUCH less than before.

Special Exposure (But not "Wordless")Wednesday- regular blog below

Thank-you G-d for a beautiful morning. Rosh HaShana is coming and Your fleecy white clouds remind me to try and aim my thoughts a bit "higher".

Construction In and Out

Our town has been one big traffic jam for the last few years, due to increasing amounts of cars on the same narrow streets. So the city hall has finally gotten down to the business of enlarging the “Main drag” wherever feasibly possible. Of course, this construction has its downside as well: It’s a “pain in the neck”, as traffic gets rerouted ( the bus you are riding home suddenly will not be stopping near your house…), sidewalks disappear, etc.

But I bear with it, knowing that in the long view, it’s for my own good.

Meanwhile, our house plumbing renovations are going ahead… VERY slowly. I’ve been without running water in the kitchen for over a week. …….But, again, the gain outweighs the pain. The bath is almost done and is beautiful.

And what about internal construction? Renewing our deeds and personality as the (Jewish) New Year approaches? (Or as a chance comes, for those of you who aren’t Jewish.)
Difficult. Painful.
Takes foresight and planning.

But, undoubtfully, for our long term benefit!

Update on Stove Tuesday evening:

The technician came today, and fixed my oven (which was also on the blink), but is going to have to specially order the igniter part. At first he tried to convince me I didn’t need it, and that we could use an “igniter rod”. So I told him:
This morning I was writing on my computer, and Ricki made breakfast (without me noticing).* When asked later how she had lit the fire, she pointed to the igniter. Apparently she kept pressing it (it still makes a very small spark) until enough gas had escaped to ignite with a small “bang”!
So the technician acquiesced, and no more computers for mom in the morning, till Ricki leaves for school (or before she awakens…).

* She made for ME, too! Toast, and fried eggs. The best thing is that she showed concern for someone besides herself!

Gas Mains and Matches

The automatic “lighter” on our stove has not been working for the biggest flame lately, creating a rather hazardous situation. Ricki, seeing that the stove was not lighting, on occasion left the gas on by mistake. As a result, I have had to be extra vigilant about being “on hand” when Ricki lights the stove. So it comes as no surprise that the other day I caught Ricki trying to light the stove with matches. I warned her that this is a new skill, and a potentially hazardous one, so she must call me when she uses the stove.
The next day I found her practicing the igniting of matches in the living room. She actually did a good job lighting them. I guess she must have some Yankee genes there (“Independence or Death!”)! I reviewed with her the dangers, and what to do if her clothing would catch fire. And I am keeping an eye on her, meanwhile.
AND I have called the repairman to hopefully fix the automatic lighter, QUICK!

The 7:20 am phone call

Now I am usually awake LONG before 7:20 am. Ricki has to be ready to go downstairs to her school transport by 7:35, so I get up at the latest at 6:50. (That’s so I can wash my hands, wipe the cobwebs from my eyelids, and have a quick cup of “Brew”-i.e., coffee- before I wake Ricki up at the latest possible moment, being 7 am.)
But today Ricki is not going to school (due to the operation yesterday). (She feels great, but I think all the blood spots in her eyes would freak her classmates out a bit…) So I was sleeping in, when the phone rang, and rang, and rang…
I figured it was my husband, calling from the grocery store. He has this habit of going without checking the fridge (because it’s “your job”, so he doesn’t need to, LOL), and then calling to hear what we need. OK. I’m glad he goes. But not wanting him to realize that I had still been asleep, I raced to the phone and answered in a cheery “wide-awake” voice.
The voice of Ricki’s school transport driver came over the line. I had told him in advance that Ricki would no be attending school for two days at least, and that I would call him Monday afternoon about Tuesday. (I would have said three days to start with, but there is a short class trip on Tuesday that Ricki won’t want to miss… so we’ll see….)
- “So how is Ricky?” he asked. (“Oh how sweet of him to ask”, I thought to myself.)
- “Oh, she’s fine. She had the operation yesterday. I think it went OK. She does have a bit of temperature, but I’ll call you later today about tomorrow…”

Then the driver’s voice continued: “Well, you can give her Optalgin for the temperature; I just wanted to check how she was.”
Only it wasn’t the driver.
It was the surgeon. Same voice, different person. GULP.
(me): “Well, thank you so much for calling.”

(Me to myself): Now the doctor is going to think I’m a real blimey stupid lady. What’s that bit about being in touch about tomorrow?!? My appointment to see him is Wednesday! And even worse, the “She had the operation yesterday. I think it went OK.” He’s going to think I’m a bit crazy…
So I called him back… got a voice message box… and explained. Hope it helps! Color me greenish-pink from embarrassment.

Back from Surgery

Well, we are home again after a trying day for Ricki, who is now sleeping. She panicked a bit on our way out of the hospital, as in the elevator going down she saw her eyes in a mirror there (with traces of blood....). Then She threw up in the taxi going home (luckily into a bag), and the driver almost wouldn't take us further. I yelled "Mister, she threw up already, There's nothing left! Would you put a patient after surgery out in this sun?" So he took us the remainder of the way.
I arrived home to find that nothing had gotten in my absence...I guess homes run on moms.....
Of course while there she charmed the staff. My guess is that they have not seen a girl with Down syndrome who shows so much independence. Of course her independence caused a few problems (for example, she kept gripping the blood pressure cuff, which did not allow them to check her blood pressure in advance of the operation). But she was a real trooper, not even complaining when they put an intravenous in!

Surgery Sunday

As you can see from this picture, Ricki is cross-eyed. At our eye-doctor’s urging, we are having surgery done to hopefully correct it. The surgery is scheduled for Sunday morning (Greenwich plus 2) at eight.
Today I hope to have time to make a booklet for Ricki, to read to her on Saturday, explaining about the surgery and it’s aftermath. She will be wearing bandages on her eyes for at least 24 hours. I HOPE she doesn’t decide that she can take them off.

Perhaps it’s Infectious.....

Through the "Google Alert" on Down Syndrome" I came across a new blog, By someone whose sole purpose in blogging is to convince the world that Fetuses with Down syndrome deserve to die.
OK, OK, they are nutheads just looking for an argument, possibly fueled as a backlash to Pallin. Nevertheless, I would like to give a reply.

I am willing to admit that my daughter, Ricki, is not college material. But I don't understand why you feel so strongly that she not only has no right to live, but, even more, should not have been ALLOWED to live. Because she is not "perfect"? Are You perfect? Your neighbor? Where would you draw the line who deserves to live, who may, and who is not to be allowed to live?
Ricki, age 14, does not have "Mosaic" (partial) Down syndrome. She is a normal teen with Down syndrome who was given a good education. Like I said, she won't go to college. She will probably work as a restaurant worker, a cleaner, or as an aide to the elderly, or in acting.
It goes without saying that Ricki can wash and dress herself independently. She also makes her own fried eggs for breakfast (I know of "normal" 14 year olds who don't). She also sweeps the floor, hangs laundry (when the dryer isn't working), helps in the kitchen, reads, helps to watch her nieces, and hates doing homework.
She enjoys a good joke, talking on the phone to her friends (she dials), climbing mountains, taking photographs, and dancing/acting.
Besides disliking homework, and being told by mom what to do, she hates that people relate to her as a "person with Down syndrome", and not as a person called "Ricki".
OK, her education cost more than normal. And for that she should not have been allowed to exist?!?
A final note: You compare Down syndrome to the plague, malaria, and small pox. These are three highly fatal, infectious diseases. What's the matter, afraid you will catch "imbecility"? Seems to me you have already! (With apologies to the disabled community for the comparison.)

The Torn/Missing “Dots” Communication Sheet

Each day my daughter Ricki (who is integrated into a normal classroom) takes to school a “dots” sheet. This is a communication sheet between me and the aide. It includes her schedule of classes, with color coding to differentiate between in-class and out-class (private tutoring ) periods. In addition, there is space for me to write information for the aide (pictures for geography are in the green folder, tomorrow Ricki will come an hour late, etc.) and for the aide to write me (tomorrow send money for an activity, tomorrow will be science instead of math, etc.).
There is also an area for the aide to draw “smiles” if Ricki behaves, and frowns if she doesn’t. Usually she does behave, as her “right” to watch computer for half an hour in the afternoon is dependent on her marks. (To see a picture of a sheet, see here.)
Now, irregardless of the fact that she has Down syndrome, Ricki is one smart kid. And since gazing at the computer screen is one of her biggest pleasures in life, she takes care to behave. However, as with all of us, the yetzer hara (evil inclination) taps her on the shoulder on occasion, and, as for most of us, she does not always succeed in ignoring his wiles. When that happens, Ricki has a problem. And she has several ways of rectifying it:
1. Cross out the frown and draw a smile (or otherwise effect the change to a smile)
2. Tear out a bit of the sheet, where the aide wrote WHAT her heinous deeds were (the aide does this to thwart Ricki’s first tactic)
3. If all else fails, “lose” the sheet. (This option creates extra problems in that ANY information left by the aide gets lost.)

Well, Ricki may be a smart kid, but Mommy is no dummy, and all lost/torn sheets result in a phone call to the aid. The most that she can accomplish is a short interval of avoiding blame, but the truth eventually catches up with her.
So that doesn’t sound so smart, does it?

So why do I think it will work? Why do I think that the snuck piece of cheesecake won’t show up on the scale? Do I think that the repercussions of overweight will just fly “Peter Pan” over me to someone else?!??? Why do I act as if I can do whatever I want, without repercussions?

Elul is here, and Tishrey is fast approaching. By Jewish tradition, this is the time of year that it is easier to repent. Now is the time.

One Day Vacation

Sorry. I am falling asleep in the chair, and have TONS to do tomarrow. So for one day, a non-post.

Try this Tuesday

"PschMamma" posted over at 5 minutes for special needs an idea to use with a key ring. So now that you are all running out to buy key rings, buy a few more. There's a lot more that you can do with them!
For all of these you can use laminated pictures/drawings (or text), or, as in the article listed above suggests, plastic sleeves from baseball card covers
AM ring (very helpfull!) put on the ring a list of things the child needs to do before heading out the door to his school bus ride in the morning, such as: check school bag, make /take lunchbox, library book, do I have bus card, lunch money, take medicines, brush hair, brush teeth etc, etc.
PM ring - same as AM one, but with bedtime activities
Chore ring: A cute (make it fun!) picture/drawing of chores needed to be done before going out to play or to the computer.
school bag checklist: all the things I have to be sure are in my school bag.
Individual task analysis: steps to do to complete any chore.
For example, if his chore is to do the dishes, you could hang up the ring in the kitchen, so he can check when finished that everything was done: dishes to sink, perisables to fridge, bread and cereal closed and away, dishes washed, dishes rinsed, table wiped, garbage to trash can
Using pics from a digital camera, or from a picture disc like "Picture This", any task can be broken down: taking a bath , setting the table, etc. A title card will help him know where to start on the ring
steps in changing a menstrual pad (this is really just another task analysis, but I believe it deserves special mention.)(and in ring form, this fits easily in purse!) Before the first picture, put a title card, so she knows which picture to start from. This will allow more independence until she has the proceedure "down pat"
For older child with slight learning disabilities: class schuedule
Shopping list prompt: You can teach your grade school child to make the daily shopping list (ahem..or use it yourself): a ring with all those staples so easily forgotten: sugar, salt, eggs, etc. Check your supplies of these items when making the list. [don't forget to include chocolate on the ring LOL!]
For non-verbal cvhild, a mini communication board
For more ideas, click this button:

Not a Baby!

Ricki’s father recently came home from a trip, and brought her a doll. It really was not such a great gift, as Rick really doesn’t play with dolls much anymore, but he thought she would like it. So last night he said “When your friend Miri (a girl from her eighth grade class) comes over on Friday night, show her the doll.” (He was hoping Miri would praise it).
Ricki shot back verbally as fast as a cowboy with a firearm: “What?!? So she should think I’m a baby??!!??”

Compare this to yesterday’s post. She certainly knows where she can get away with acting childish, and where not….or, to be more exact, where her interests lie.

$*@*($^*$^#*^%#*%

Look here for the biggest lie I've seen in a while. (Last time was the goons in Australia hinting that Down syndrome is from incestuous relationships... see my comments then)
And this was on Goole's Alert for Down syndrome.!!!! Too bad it was an ad.. no "comments" area to blast at them. Who many people will see this and be misled?

Fact one: Most babies with Down syndrome are born to younger mothers. They are more fertile. So even though the risk goes up with maternal age, still most are born to women under 35.

Fact two: The incidence is 1/800-1,000, not 1/675

Fact three: Undiagnosed cases of Down syndrome are pretty rare... I would quess about one half of one percent of all babies with Down syndrome, or about one in 18,000 babies. And the undiagnosed children usually have mosaic Down syndrome.

And then they go on and talk about women being in fear about the "danger" of ultrasound, while in the same sentence talking about amniocentsis with no mention of danger.

To top it off, I went to his web site. He wants to help parents whose babies were not diagnosed in ultrasound!!LOL. As if ultrasound has ever been considered accurate as regards Down syndrome, or that a case can be made for "undiagnosis of Down syndrome through ultrasound...."
SHAME ON GOOGLE ALERTS FOR PUTTING THIS TRASHY, INSULTINGLY NEGATIVE AD IN.

Away for Shabbas (Saturday)

We went “away” last shabbas, due to all the plumbing work. Not having water in the kitchen and having a newly-tiled bathroom floor (that I had to be SURE Ricki didn’t step on for 48 hours…) prompted me to accept my son’s invitation to spend shabbas by him. Some observations:

1. Going away for Shabbas means being flexible. It often may involve being less comfortable. For example, Shabbas lunch, traditionally cholent, is a heavy dish, and is the best sleeping drug in the world. At home, the relief of a flat bed is only ten steps away. The place where my son found us to use as sleeping quarters was (only!) 8 floors above his. (Actually, it was easier and faster to climb than I feared.). But it made me appreciate all the more the trials my daughters-in-law endure when they come to us for the weekend.
I also realized that I sometimes worried when to rejoin my son’s family. Was it too early to go down? Or would they feel we had only come for meals if we showed up later? Should we go in time for me to enjoy my grandkids, even if that meant that there would inevitably be squabbling between Ricki and her niece? So I learned that I need to reassure daughters in law that they can come whenever they want, and I will only be sleeping until X o’clock.

2. In the afternoon, we went to a park. I quickly noticed a little girl looking at Ricki and whispering to her friend. Ricki also noticed: Her face fell.
Later Ricki went from the swings to the slides, and this same girl and her friends went there as well. I quickly realized they were playing “Flee from the Retard”. They ran when she slid down. Somehow Ricki missed it, and I called her back to the swings. Another Mother had noticed, and graciously gave Ricki a turn sooner than expected. There are nice people in the world. There are bad.
Ricki will need to learn to deal with this. Don’t ask me how. I wish I could change it for her, but I can’t. (OK., we change it a bit at a time, but not nearly fast enough.) I can only work on giving her love (to store in her “love bank”), and self-confidence, to see that they are the defective ones.

3. Ricki is the youngest child in our family, and she is older than her nephews and nieces (excepting the first child of a half-sister). (Some of you may be surprised to know that sometimes the “Aunt” can be younger than the niece! In large families, the mother can have her youngest child after her oldest child’s first…) Thus, in our house, we have mostly toys for grade school children and up. (Note “mostly”. I purposefully have saved certain things for the grandchildren’s use on visits.) By my married son, where we were visiting for Shabbas (Saturday), all the toys were for children three years old and under. The result is that when Ricki plays with her nieces at our house, I am usually able to find something that they can enjoy, but that is mature enough to be reasonable for Ricki. This was not the case at my son’s house. He has a rather small collection of toys, and all are for the “three and under” set. Thus I was faced with the rather exasperation apparition of Ricki acting like a three-year old, fighting with her niece over a doll carriage.
As my husband pointed out: it is like the opposite of inclusion. When she is with mature teens, she tries to copy them. When faced with a three year-old- level world, she immediately crumbles down to that stage!

4. Ricki did not receive her Concerta on Saturday morning (it had been forgotten 8 floors above….). She was a bit (OK, more than a bit) aggressive. But on the bus home Sunday evening, she suddenly developed a “play for the audience” mood. So she caught the glance of a man sitting across the aisle from us. (He was with his wife.) Ricki started making faces, blowing kisses., etc. I told her that this behavior was not modest, was inappropriate, etc. It didn’t help at all. It was as if all the education I have given her on modesty, strangers, etc was non-existent. I know I haven’t done enough in this area, but my eyes were opened as to exactly “not enough” it was. I feel so inadequate before this tremendous task.

Down Syndrome and Politics

Chris, at “Mothering by the Seat of my Pants” wrote a blog on 9/11 ( see here ).
[Half the reason I read her blog is because I get a good laugh every time from her blog title…].

My addition:
If politics interests the people around a person with Down syndrome, it will probably interest them as well.
Ricki wants so much to fit in, that she laughs at jokes that she doesn’t understand She will even laugh at a joke in a language that she doesn’t know, if others are laughing. [for example, see a short part of this post.]
Ricki, and probably most teens with Down syndrome, are aware of what interests others, and they will thus pay attention. When Ricki was about five, there was a lot of discussion in Israel about the trial of a government figure, Aryeh Deri. Posters with his photo abounded, put up by those claiming that he was being railroaded. Once when we were on the bus, Ricki saw a poster outside. “Hey”, "DERI” she yelled. People on the bus were SO surprised that she was aware of this at all.
I suspect that next elections, Ricki will join in the fray. [Too bad. I HATE politics….]

PS Why do I hate politics?
1. Because I figure that they are ALL lying through their teeth, so why try and figure out who is “best”? [But I try nevertheless, and DO vote.]
2. I am always left wondering how in the world do they manage to pick such incompetents every time. Out of the whole country, this (!?!?) is the best they could find (!?!?).

The Good Word

FAB has written an interesting post (see here).
It reminded of a story about a Rabbi, who told his students to take care and realize that ALL men are created in the image of G-d. (Of course the evil people in the world sully that image, but that is not my point.)
One Rabi, riding on a train on a hot day, passed the train's cook-room, and comented to the cook, "You must be so hot today!"
The cook started swearing..."By G-d, you are the only person in _____ years that I have worked here, who thought about the fact that I am HOT!"
So a smile to the postman, newspaper seller, the elevator man, bus driver... whoever you meet today... they deserve a smile and maybe a good word.

Pro-Choice?

From The News:
Dr. Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists in Ottawa, worries that Palin's now renowned decision may cause abortions in Canada to decline as other women there and elsewhere opt to follow suit.
He says not every woman is prepared to deal with the consequences of Down babies, who have developmental delays, some physical difficulties and often a shortened lifespan.
Wider use of blood screening and amniocentesis during pregnancies can now accurately predict the presence of Down syndrome.
Lalonde says his primary concern is that women have the choice of abortion and that greater public awareness of women making choices like Palin to complete a pregnancy and give birth to their genetically-abnormal baby could be detrimental and confusing to the women and their families.
YET:According to a 2005 survey of nearly 1300 parents of children with down syndrome, a majority reported that doctors "didn't tell them about the positive potential of people with down syndrome."

I wouldn’t have flinched if the “good doctor” had said he THINKS the rate of abortions will go down.
But No, He FEARS.
It sounds to me like he begrudges my daughter the air that she breathes.
I guess pro-choice is only for those who want to abort.

Down syndrome, Death, and Mourning

Ricki tomorrow in “halacha-dinim” (Jewish law) class will be learning about who can be a leader of prayer, blower of the shofer (ram’s horn) for Rosh HaShana, the Jewish New Year. The specific part these eighth grade teens will be learning is the part dealing with mourners.
As I sat down this morning to prepare materials for Ricki for the preparatory session she will have with her aid in advance of the class, I wondered:
Does Ricki have an idea what a mourner is? She knows that people die, though I am not so sure HOW she envisions this. But she has, I am sure, no real knowledge of the words and customs associated with death.
[Gee, it just hit me that this subject is SSOO relevant to today- 9-11!]
It just so happens that Ricki’s paternal grandfather is very ill. We hope and pray that he have a long(er) life. However, the possibility of his passing away sometime this year are not low. And if it would occur before Ricki’s sister’s wedding this fall, there will be consequences for my husband’s amount of participation in the celebrations. So this is a topic that is potentially relevant to Ricki’s life.
So I decided that most of her preparatory lesson will be on the customs of mourning. How a mourner feels, etc. I will start the subject thoroughly at home, not to leave the broaching of this sensitive subject to the aide.
I am just wondering. Will the aide think “Oh, something relevant for once!”, or will she, feeling queasy about the subject, think I’m nuts? What do you think?

The Reading Machine

I have a friend who is blind; she comes to my “English Books Library”. How does she read these books? Easy, She has a reading machine.
I had once read in Time magazine, as a teen, that reading machines could be set to read in a variety of “voices”. The first time this lady came to the library, and explained that she had a “reading machine”, I was glad to know about it, and remembering the article, asked her which voice she had chosen, perhaps “Perfect Paul”?
“How did you know?!??” ( Ahh, nice to be considered intelligent and on the ball….)

This morning she paid the “Library” (My “library” consisting of only some 24 shelves of books, plus an additional 3 shelves on “special needs”.) a visit. She mentioned how much she enjoys listening to taped lectures (of Rabbis), much more than hearing it from a book with “Perfect Paul”. Because “Perfect Paul” is not human. He is a machine. And no matter how well he is programmed, he just can not give the same inflection to his speech as a human can.
So for all of our slowness, our forgetfulness, and our inaccuracies, we are still that notch—a human notch--- above machine.
So I , for one, will try and use my voice wisely and not carelessly today….

A comment and Reply. For the Sake of Being Honest

The comment (on "The Small Deed"):
I admire your discipline. Reading blogs has become very habit-forming. Barbara

Barbara, don't admire my discipline so fast! I arranged the blogs I enjoy as a "follower"... and found that I had fourty! As a profound reading addict this is no surprise, but I will have to cut down, as I posted, which I hope to do. (At least 10 of those fourty are infrequent posters, so with the "follow " feature I can follow almost painlessly.) At least by using the follow feature, I don't have to "check" for posts, which makes it MUCH quicker. One even sees the start of the post, so it can help you avoid posts like recipes,or whatever you might not be interested in.

But don't admire my disicline because I am working on it, but not quite there yet.

Sarah Palin, Down Syndrome, and Enough

You know, I really think it is enough. Ever since Ms. Palin gave birth (and more so since her nomination), the topic of her choice during pregnancy to continue the pregnancy has been news.
I mean, how newsworthy is this?!? While the abortion rate for Down syndrome conceptions is high, Ms. Palin’s choice is not an unheard-of option. While I personally made the same choice, I don’t think she needs to be bestowed knighthood for it. And, by the same token, I find all this talk about how will she care for the baby also hog wash. Are there no mothers of children with Down syndrome who go out to work? Yes, there are, and plenty.
Either tack gives the impression that having a child with Down syndrome is a terribly heavy burden. I’m not going to say that it is easy. It isn’t. But, for heaven’s sake, I think it is time to put things into perspective, and get onto the many topics this campaign SHOULD be about.

Enough is enough.

The Warm Support- Delivery and the News of Down Syndrome

You know, I remember Ricki’s birth like it was yesterday. We were told the diagnosis immediately, and I am glad I was. (Why that is so is not important right now.)
Anyway, after I had been cleaned up, Ricki taken to ICU (because she had turned blue in my arms), I was taken to the recovery area. Only one other new mother was there, and she seemed to be very tired. [ I couldn’t help thinking :”Does she know how lucky she is?”] The nurse came in, and gave me that “pitying look”, my first experience of being viewed as an “unfortunate”. She said “Do you want to talk?”
-“No,I’m O.K.”, I answered. I instinctively bolted from the “pity party”….
About half an hour later, another midwife entered. After taking my blood pressure (with a smile), she said “You must be worried about your baby…”

Yes, I guess so. Screaming for the nurse to come cause your child is blue is no picnic.

But the point here is, that she didn’t give me a pity reaction, but a chance to explore where I was at. So to HER I yes was able to open up, and express some of my concerns. It turns out that she herself has a special needs child. Figures…..

The nicest story I have ever heard of a parent being told “THE NEWS” was when a doctor, holding and stroking the baby, mentioned that they had some concerns…. The non-verbal message being that this is a child, a loveable child.

So hospitals, note. No pity parties.
Just the truth, with a bit of warmth.

The “Small” Deed

This morning I was feeling a bit “low”. I was tired, and had way too much to do. In addition, a relative had called to tell me about an argument they had had with someone, and I was concerned about the family “politics” involved. (I find it very irksome when family members bicker. If you can’t stay on the good side of your family, you have problems. There is no replacement, in general, for family.)
Just then my 18-year-old, David, arrived with his laundry. (We have a friendly agreement: I do laundry and he chauffeurs me once a week.) He made himself a cup of coffee, and a few minutes later he mentioned that he had some free time this morning. So, he asked, did I want him to run that errand I had asked him to do a week ago (or had I done it in the meantime)? I replied that he could certainly do it.
-“Anything else I can do for you?”
So I gave him a small list, and in the meantime he noticed that the trash needed emptying, and put it by the door to take down in a few moments.
Within five minutes my “blues” had faded. I felt much more energetic, and started the day’s chores.
See the power of giving someone the feeling that they are not alone? That someone cares? Of offering to do something small for them “on the way”? Five minutes changed the day for me. (Well, almost. I’m still falling asleep when I sit down….)
And David didn’t loose out either. He received a good lunch in recompense.
And PS: One of the things I did today was to cancel an activity that Ricky likes, but doesn’t need. This activity takes about 3 hours of my time each week, and I decided that my health and sanity has to be more important. If I am overloaded, and overbooked, it is time to draw some lines. (Another line will be reading fewer blogs. If less people pursue this blog here as a result, I’ll have to accept that. I hope I’ll write well enough to pull readers anyway.)

Just to Show......

No wonder the downstairs neughbors were getting "rain" from their roof!
Some of our thirty-five year-old pipes.....

“What can we do different?” vs. “Mommy Bashing”

I once read that when administrators and school psychologists were asked the question, "Whose fault is it if the student is not succeeding?", and given the choices:
parent
student
school
a huge percent (98%?) said "parents and/or student.”

ie., It couldn't be because of the teacher/school!

My daughter Ricki is one of the first students with Down syndrome to be really integrated into a grade school setting in our town, and indeed in Israel. Before that time some kids were “dumped” into regular grade schools (ie, included without adapting the materials, and without enough support), but few where truly included. She was integrated into a certain school from first grade (she was 2 years older). The school refused to accept our offer of free consultation. saying,"we can do it ourselves". They did a very poor job, and every single year at the IEP they had a "Bash the Mommy" session.
One year when they said "this isn't working!" I suggested that NOW maybe they would consider using our (free for them) consultants. They refused, saying that we were cruel parents, unrealistic, and didn't accept the reality of our daughter's retardation.
Finally, after three years of this fiasco, I managed to get her transferred to a different school. They jumped her up to sixth grade (instead of fourth), to her age group. And she did much better that year, despite the higher level of the studies. Things weren't perfect, however.
So, when the IEP came around I braced myself for some "Mommy bashing." After all, it took less than three years to train Pavlov’s dogs, and I dreaded the upcoming session. I felt physically ill in anticipation.
Not once in that IEP meeting did I hear the words “improper placement”, “not fitting”, etc. They admitted some problems, and held at a separate time a staff meeting. I heard that at this meeting the “problems” were laid out. And then the principal said: “OK. What can we do different to change this?” Now THAT is an Educator!

Continuing the “Bathroom Saga”-But its not all about plumbing!

Thursday afternoon I went with my daughter (D.E.), her fiancée (Yaacov), and his father to buy ceramic tiles for the bath. It had become obvious that the pipes in the bath are completely shot. Even the tub had minute holes, leading to seepage underneath.
Now Yaacov’s father has an Arab acquaintance who deals in ceramics, so we left at 3:00 pm to go buy tiles. For some reason we were delayed in our arrival. The workers at the tiles store were about to break their daily fast (of the month of Ramadan), and we had to wait. Dusk slowly fell. On one building after another, festive lights strung up in the shape of the Moslem crescent were lit. The half-mooned shapes adorning several rooftops were silhouetted against the orange-red, and later, purple sky.
Now all of my sons, and Yaacov are amused with me, because I am a real “scaredy cat” when it comes to going to Arab areas in Israel, and certainly it was not my cup of tea to be sitting there for two hours as darkness fell. (And this, especially after my daughter’s fiancée had told me only an hour earlier the story of how he was nearly killed in an Arab “lynch” five years ago.) Even my adult sons know that if they go to pray at a holy site (with a group) in one of the Arab sections of the country, it pays to tell Mom only after the fact. They distinguish between Arab areas and the Palestinian ones, the former being relatively safe, and the later not.
Our host, in typical Arab hospitality, brought drinks and fresh fruit. (I didn’t partake, not knowing if everything was 100% kosher-even fresh fruit is a problem some years.) This middle-aged man sat joking with Yaacov’s father. Later his younger sister, who looked very friendly, came over to talk with us. However, it quickly became apparent that she knows no Hebrew at all. So Yaacov and his father did all the conversing. I smiled. And Ricki laughed. Every joke elicited laughs from Yaacov, his father, and Ricki. Of course, Ricki does not know Arabic. But she reads social prompts, and laughs on cue.
I reflected on how much the conflict of our peoples hurts us. Wouldn’t it be nice if there could be peace? If I could go unafraid to an Arab village, if there could be true give-and –take without needing to be on guard. This young woman really looked friendly, and probably is .But lack of trust is poisonous.
Finally we went to buy the ceramics. When haggling over the price of the transportation, D.E. forgot where she was, and said, “Oh, we’ll just hire some Arabs to do it cheaper.” The man gave her a look, and I was afraid that our good deal on drains was going to go down the drain. I quickly piped up, “But the untrained workers that you are thinking of are not as reliable as this man’s workers.” I made a counter-offer, and the deal was sealed.
I told Yaacov that he has to be here when they deliver the stuff. I don’t have the experience to know if everything ordered has been delivered or not. And- I still don’t trust Arabs. Even if they serve me tea and grapes.

The Start of the “Bathroom Saga”

I suspect that this situation, which I am dubbing “The Bathroom Saga”, will lead to more than one post. I already have more to add in a day or two.
It started with a knock on my door Tuesday evening. My downstairs neighbor hemmed and hawed, and finally pronounced: “We have water dripping from our ceiling..”
So I went and had a look, and the stark facts hit me full force. We have a plumbing problem. So I counted floor tiles from his front door to the spot under the drip, returned upstairs, and calculated where the problem was (again by counting floor tiles). I was instantly struck by the certainty that this is going to be expensive. The leak is directly under our bathtub.
Now let me fill you in a bit about our apartment. The building is not terribly old (34 years?), but is old enough that the old metal pipes just aren’t working anymore. They are disintegrating. The tub is also 34 years old, and the porcelain coating is wearing off in several places.
A lot of places in our house need fixing. Every time I see a sweepstakes with a first prize of “refurbish your house” I rush to enter. I would love to have a new kitchen, a normal dining room table (don’t ask)…you understand, I’m sure. A household of kids can be a bit hard on the furnishings**. [Although -in defense of youth- let me add that twice I’ve had teenage sons do marvelous paint jobs on parts of the house.]
Our bathroom is particularly bad. Places in the wall where past plumbing jobs were done were not refitted with tile (so you see the black concrete beneath). The door to the room has a huge dent in it, where a frustrated teenage son had given a good kick, trying to impress on a sibling that he needed the bath NOW. (I add here to reassure you: He and the sibling both grew up to be non-violent law-abiding citizens.) The shower doesn’t work at all.
So faced with the prospects of major repairs, I called my daughter’s fiancée, who works in related fields. Maybe he is familiar with someone competent that I can trust not to overcharge? His reply: “I’ll do it.”
Now, as much as I enjoy bargains, I need someone competent. But it turns out that he has also done plenty of work in this area as well, and has relatives connected to the business (so he can get parts at cost price). The only catch is he is busy as can be, but he will make the time.
So, on Wednesday he came over to see the leak downstairs, make measurements, and discuss possibilities. When he saw the dilapidated state of our neighbor’s kitchen, he offered to tell him for free how to fix it up. I must admit that my daughter picked a groom with a heart of gold.
And even though a “new bath” was behind a “new kitchen” on my “wish list”, it looks like we will get a refurbished bathroom. Because, if we have to tear out the tub to work underneath it, it doesn’t pay, long tern, to leave things as they are now. It’s almost as if we are being told: “NOW is the time!” [Especially as we will be getting it done at cost price, litterally. Also we are leaving intact anything that is still passable and likely to hold up for the near future. I am not chucking out anything JUST to get "new" if not necessary.]

** There is a Jewish tradition/saying that if a woman has seven sons in a row she is promised heaven: because hell she had already. LOL. I guess I’ll have to do something else to deserve heaven, since my six boys are broken in the middle by Ricki’s older sister. A household of teenage boys is a wild ride, I must admit. But I don’t regret it for a moment.

And a final Note: This downstairs neighbor is the one with the chicken(s). (See post on Elul from September 1st.) When I went to look at the leak on Tuesday night, I noticed that they have only one left. Amazing that one hen can cackle so much!

Bureaucracy, Israeli Style-or- How do People Who Work Manage?

I have yet to figure out how people who work full-time manage. I do not work full-time, yet I do not sleep enough. In addition, I am constantly behind in my lists of “things I want to do”. [Although, as I frequently have pointed out to friends and relatives: An intelligent, creative person has a major problem: They can think up good ideas and projects much faster than they can carry said projects out….] I could easily consider myself at least part-time employed, as the adaptations and homework for Ricki easily take (on the average) a few hours each day. [One of the reasons for this is because I am not working in my mother tongue, which slows me down considerably.]
But when one has a steady job, who does all the zillion and one tasks that bureaucracy turns into terrific time drains????

Last week I had to go to the health fund’s office (non-Israelis see the start of this post for elucidation) in order to get a voucher for Ricki’s upcoming eye surgery. Now understand that every office in Israel is open at different hours. Some work 9-1, and then reopen from 4-7, others work straight through from 9-5. Some are agile and workaholics, opening at 8:00, other places and stores open at 9:00 or 10:00. The post office is closed on Tuesday afternoons, the bank on Wednesdays, and optometrists are usually closed on Sunday afternoon. (Sunday being a regular workday here.) Some places are open on Friday morning (Friday being a half-day workday); others are not.
So I decided to be smart. I checked the health-fund’s booklet, and was pleased that it was open at 2:00 on the day I wanted to go. I went, and a sign on the locked entranceway informed me that the hours had been changed. Tough luck and an entire hour was shot just like a slap on the face.
Just try and go shopping for a list of ten things. I had a morning I scheduled for “errands” last week. I prepared the money, the papers, and figured out the best order in which to trek from one store to the next.
I took a bus up a big hill to my first stop (better to work going down the hill than up, my lazy side had decided). The first store was closed; they were on vacation. At my second stop, I purchased everything I had on my list from that store, except for one item that they were temporarily out of. My third stop, was, amazingly an astounding success. At the fourth place they said that they no longer carry the item I was looking for; I should try at store “Y” (no guarantees though), this store of course being located back up the hill near stop number one. So I sweated up (36 degrees centigrade, humidity 65%) the hill, only to be told in said place of business, that she could not and would not order the item in question. Then I went as fast as I could to reach my next-to-the -last stop, the post office, There the line was huge. [Do I stay in line, and finish so late that I will have no time to reach the pharmacy (last destination)? Or should I go to the pharmacy and then have to return another day to the post office?] I opted to stay in line at the post office, to pick up the book I was expecting, and had a receipt for. {Much more enticing to get a book than some medicine….) After standing in line (there being 2 seats for twenty people ) my turn arrived. She pointed at two letters scribbled on the bottom of the receipt. “It’s true that they should have sent the package to our branch, as they always do, but for some reason they sent it to the branch in XXX neighborhood. The sorting office has summer help, so someone new must have botched up.” She gave me a phone number to call, to have the package sent to her branch, or I could take a half-hour bus ride to the other branch. Sum total: I spent one morning dragging myself through the streets in the ferocious heat, and only accomplished about one-half of my errands.
On arriving home, I called the number I had been given of the sorting office. I started to tell my tale, and got hung up on. So the next day, I went across town. But,No….the package was not there, it had been sent back to the sorting area, someone realizing that it was not destined for anyone living in that area. Five days later the package resurfaced, and I thankfully was able to retrieve it.
So, tell me, how do people who work manage?

special exposure Wednsday..but not "wordless". My regular Blog is Beneath This

This picture is one of my favorite shots of Ricki, even though her face is a bit in shadow. I call it "AWE".

And what is so "awesome"? Calypso cascades, Rocky Mountain Park, Colorado (Taken last year when visiting my parents.)

Musings on a Wednesday Morning.

A few years ago I was reading Downsed's* Issues and Information booklet on social skills. (Now available on-line,see here ) They had a list with the percentages of teens/adults (with Down syndrome) who could do certain independence skills. I noticed that use of a microwave was only a low 24%, and decided then and there to teach Ricki to use a microwave, at least for warming up food.
It was one of the biggest mistakes I have ever made. It opened a "Pandora's box" for Ricki. Suddenly, warming and eating vast quantities of soy patties had become easy. One just had to make sure that no one caught you taking too many.
And- as happens occasionally- if Ricki would hear someone coming, she had an easy and quick solution: discard the incriminating evidence as soon as possible. We began finding half-eaten soy patties behind the computer, on the sidewalk downstairs, etc. This behavior has since extended to any article she is overeating. So last night she dumped out a glass of milk that I caught her drinking in the middle of the night.Never mind that this meant "no milk for coffee in the morning", a distinct set-back for a coffee addict like myself.
So bright and early this morning I meandered into the local grocery. I didn't even glance at the pastry section: I know this is taboo for me. However,as I was paying, I couldn't help but notice the pastry the woman behind me was holding: a jelly-filled doughnut (sufganiyah).(This is a holiday food for channukah, which will start in about four months.) I did a double-take: "It's not even Rosh HaShanah yet!" I yelped in surprise. They even beat last year by 6 weeks. (See my views regarding this in my blog from February 6th, here.) For Americans, this would be akin to selling Halloween costumes before the fourth of July.
Am I the only one who thinks that commercialism has gone a bit too far?

* Any parents of children with Down syndrome who are NOT familiar with Downsed of England (Sue Buckley's place), should definitely check out their website (here).They have a wealth of up-to-date research-based information. They are currently publishing on-line more and more material from their publications.

Oh, Late Nights…the New School Year has Begun.

The new school year always starts out in a bit of a jumble. First of all, there is no permanent schedule. As every year, I wonder to myself why can’t they start working on the schedule earlier, and have it ready on time? I am sure there must be a good reason, but since I am not a teacher, nor administrator, I have not been let in on the secret.
When we do get the final schedule, I will need to slave several hours over the plan, deciding when she will be in class, and when out. Then I will have to make “communication” sheets for each day of the week, (like that shown below).

[The circles are points for good behavior. Subjects are at the right, pink being "in class", and light green "out" (private tutoring).All the blank area on the back gives the aide room to write what was studied, that Ricki didn't really get the smiley circle she drew for herself for science class, etc.]
But that is OK. What irks me is that the schedule we will receive in about a week, will only be the timetable for a few months, and mid-winter I will have to do it all over again. And meantime, I have to prepare each day a “communication” sheet, which has little to do with the final schedule. And this all adds up to a lot of uncalled-for work.
The second problem of the new school year is that I do not yet know the teachers, nor their phone numbers. Today Ricki has science, but I don’t have the faintest idea what the teacher will be covering in class. This makes preparation of materials impossible.
At least her homeroom teacher, who I did speak to, has agreed, at least in theory, to get her planned topics to me a day in advance. She sounds open to ideas, and should work out OK.

Tagged

WARNING: Don't let this post make you miss my real post for today (below).
I was "tagged" by Renee from "Life with my special k's" and given an award. Thanks Renee, its nice to know that someone likes what I write. However, I am going to cheat a bit on the rules, and send this out to less than 7 people. I don't have time to read that many blogs.


Now here are the people whose blogs I think are really worth the time. I DO enjoy other blogs, but these strike me as deserving:
1. Terri at Barriers, Bridges and Books writes eloquently, mostly on disability issues, but I think anyone should be interested. See her posts of August 22 and 23.They are on disability, but are very thought-provoking.
2.Trish at another piece of the puzzle has in general lighter stuff than Terri, but has a lot of good ideas.Generally more relavent for those in the special needs crowd.
3.The Sandman, here, is written by an Israeli anesthesiologist. I just discovered this blog recently, but it makes interesting reading. As a nurse, I never realized how involved anesthesiologists were with their patients and their care.....
4. Carolyn at "Juggling Frogs" ... Pure common sense, from a mom in Massachusetts. Men, (do any men read here????) and any woman wanting a good laugh, go read her July 5th 2007 post (its on her sidebar) "Top 10 acceptable answers to 'Does this outfit Make me look fat?'"

Elul, Shofer,Chickens, and Teshuva (Repentance)

Preface:
Well, this month we have an oddity: The Jewish month (in this case, Elul), matches up with the Gregorian calendar. Today is the first of September, and the first day of Elul. [Now many times that is not the case, but September can start, often, in the middle or even 2/3 of the way into Elul.] This situation is a teacher’s paradise: She has an entire month to cover the material on the Jewish New Year and holidays that immediately follow, instead of 10-20 days. Elul itself has a special character, marked by the blowing of a shofer (ram’s horn) each morning in the synagogue. It is a time for doing teshuva , repentance, before the new year starts at the end of the month.
The Blog:
We live in a building which is attached on one side to the building next door, which happens to be a synagogue. Years ago, I loved to hear the shofer blasts each morning wafting upward to my third-floor apartment from the open windows below. Then, about ten years ago they installed air conditioning. Now far be it from me to begrudge them their air-conditioning…. But it does mean that their windows are closed and I no longer hear the cry of the shofer to do teshuva, quickly, before the next month, Tishre, arrives. And, sadly, without the prodding of the shofer, my contemplations on repentance were non-existent. I was too caught up in the everyday morning rush to pause and muse over any attempts at self-improvement.. (ME??? CHANGE???) This was until my neighbors “gave” me a substitute: a bunch of cackling hens.
Now I am willing to swear on the Bible that the following is not made up. My downstairs neighbors have in their apartment mirpeset (enclosed porch) a bunch of hens. [No, this is NOT usual for suburban Israel, nor for chareidi (ultra-orthodox) families. Not at all….] I know that they are hens, not roosters because they did (note past tense) have a rooster (note singular form) until recently. At one point the neighbors made it clear to said tenants that Mr. Rooster was no longer welcome in the building. He had gotten so enthusiastic about “singing his morning praises to G-d” at the unearthly hour of 5 AM …..and not once, but in an uninterrupted flow of crowing ("cock-a-doodle-do"/ “ku-ku-ri-ku”)…that the neighbors protested vehemently. So Mr. Rooster got sent to the slaughterer.
So Mr. Rooster’s wives are left, and I noticed these last few mornings that they really made quite a commotion by themselves. The term “cackling like old mother hens” takes on a much more vivid meaning to me. And I think they (or rather, G-d, through them) have a message for me. And perhaps for you.
I have been blogging for 9 1/2 months already, and have written over 250 posts in that time. I guess I have a lot to say. And, not surprisingly, I think it usually is interesting and has content. I hope my readers agree. And I hope I never “cackle” like a hen, just to have a “blog” to write. I think that my time, and yours, is too valuable. That is my first point.
My second point is as follows. I mostly blog about life from the “special-needs” perspective. Not very many of my posts come from a specific “Israeli” standpoint. And my readership has followed suit. However, over the last few days, having more time during vacation, I started checking out Israeli and Jewish blogs, to see if there were any worth “wasting” my time on. And some are. But I noticed one thing that saddened me very much. (And this is true not only about Jewish bloggers, but I would hope the “family” would have higher standards.) I noticed a lot of condemnations of others, an unwillingness to judge others favorably. A feeling that if someone disagrees with me, by G-d, I’ll stuff it down his throat.
Now we all have ideals, principles, and viewpoints. But I would like to see a bit less cackling out there. From all of us.
Happy Elul, Everyone!