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.