An Open Letter to My Fellow Chareidi Community Members

I used to think that the prevalent anti-chareidi* sentiments in the non-religious Israeli society were a product of media bias. I am sure that it is a factor, yet I am equally sure that it is much more than that, and largely our own fault.
I am chareidi, yet some of my sons are not. One is currently in the armed forces in Israel, and another will be entering this summer. The talk about the inevitability of another war makes me uneasy. When I hear the Pesach song “V’Hi S’Amdah”, I inevitably send up a prayer to the One on High, that he protect my sons, and all of our sons, from the enemies surrounding us.
No, I do not believe that everyone should serve in the army. My son needs the zechus (merit) of our Torah** to stay alive; unfortunately he does not have this zechus on his own. I do not believe that we, as a nation, could have endured in the face of the odds against us, without the merit of the Torah study and observance of our religious communities.
But the current situation is such that we DO need an army, and our sons who are serving are putting their lives on the line for the sake of their country and the people within. My sons are willing to risk their lives in order that the average Israeli can generally ride the bus without getting blown up, and yes, so that your son can go to yeshiva rather than sitting in an air-raid shelter. And I, as a loving mother, have to learn to live day-by-day with the very real fear that maybe my son will not arrive home some day. This is not the worry you have when your child goes on a field trip and returns a bit late. It is a palpable, sinking sensation that you try to overcome and control, that creeps up on you time and time again, week after week. I assure you, that if you have no relative active in the services, you have no idea of what it is like. And how a mother without faith in G-d survives it, I do not know.
Yet, when my son arrives home, dressed in his fatigues, for shabbas, he gets very few smiles. He is instead the recipient of stares. And many of them are almost hostile. His total worth seems to be that of “non-religious”, and my community seemingly can not see beyond that label. Where is the gratitude that he is standing on duty so that your child can study? The recognition that he is doing something that you are glad that your son need not do? Why is he not seen as a fellow Jew deserving of a simple smile, nod of the head, or a whispered “My G-d watch over you”, rather than the scorning looks that he receives, as if he was a carrier of some terrible virus?
Think about it. How would you feel about the chareidi community if you were in his shoes, or in mine?

PS. This post is meant as a wake-up call. I do not intend to cause a chareidi-bashing blogging event. Please do not use this post's comments section to do a big bashing fest if you have your own issues with this community and you are not chareidi. Thank-you.

*Chareidi= the ultra-Orthodox community, most of whose sons have deferments from the Army
**religious studies

Special Exposure Wednesday-Ricki and nephew

Ricki's sister let her feed the baby a bottle the other day. If Ricki has a vision of heaven, this is probably pretty close to it......

You Get Exactly What You Work For….

My step count has been down somewhat as late. And even more telling is that my aerobic walking is way down. Most of my walking steps are to get from here to there, and not my lovely walking paths with good lung-enhancing uphill treks. This is all due to my very crowded schedule as of late, in an effort to finish off outstanding things that MUST get done, before I really get started with cleaning for Passover.
And, unfortunately, I am already noticing the effects. On Saturday afternoon the weather was excellent, so I went out for an hour’s stroll. I purposely included one of “my” hills, and I could see that my stamina was a bit less. There is simply no substitute for aerobic exercise.
So as I get busy with Passover cleaning, which will be keeping me very busy, I hope to fit in some aerobic walking, at least 2-3 times a week. I hope. But sanity (ie, enough sleep) takes precedence.

Maybe I Can Wake up in Three Years?

My soldier-son, home for a few hours, was helping his younger brother fill out his "request for unit to serve" questionnaire for the army.
-"Don't go there, that is full of rough-necks. And don't even give a “one” there, as NOBODY wants it, and if you give a one, they will gladly stick you there. Instead,...."
This younger son is determined to go into whatever is the most combative unit possible, so that he won't be "bored". What in the world?!? What being bored? If he has free time, he can study for his matriculation exams, as his brother currently is doing. I understand that he wants a combat unit; he feels that it is a job someone has to do. OK. But the MOST combative?
As I commented to soldier-son afterwards, "Doesn't he realize what he will be doing to me?" Sometimes I wonder if he is brave, or simply fool-hardy. Has the "modern warfare" game given him a feeling that he can just get up and do and go on, in the face of danger????? (My younger son denies this….) Maybe I can go to sleep for the next three years???? How in the world am I supposed to live with this? Yes, with pride that he is willing. And a prayer on my lips, that he not take unneeded risks. I know that he will mature in the army. He will be more dependable, more serious, and yes, probably more willing to study. So what do I do with the terrible fear that hurls itself at me like a dragon from the tournament at Hogwarts?

A Band-Aid Story

Ricki loves to apply band-aids to any minor scratch that she might have. Sometimes the “sore” is so miniscule that I can not even see it. Or it may be a type of closed-skin hurt that does not need a dressing at all. But in general, Ricki is adamant about applying the treatment, and that is that. Well, almost.
Afterwards, there is always the need to tell her to pick up the band-aid wrapper, which inevitably gets thrown on the floor. I am simply amazed that she has not yet realized that it is easier to throw the wrapper away herself, than waiting for me to insist that she return to the scene of the crime and dispose of it properly.
Anyway, the other day she really threw a “Plaster (Band-aid in Hebrew) Party”. She had applied at least twelve plasters to her hands, and, as per her custom, had left the outer papers strewn across the floor of her room. Of course I had her pick them up.
Than, a few hours later, she suddenly removed all her band-aids, and reapplied one to the one sore the warranted it. And she even, without my telling her, gathered all the used pieces of dressing up, and deposited them in the garbage. “Eureka!” I thought. “She is LEARNING!”
No chance. A day later the wrappers appeared on the floor tiles again, as usual….

SOOC Saturday-Apples

Straight Out Of (the) Camera Saturday (motzai shabbas, saturday night for me) is posted weekly at Melody's Slurping Life. Go check it out. Her pictures are usually stunning.
Hope you all have a good week!
[image: apples and pears close up, with part of a chair visable in the background.]

The funny Thing…..

As I wrote on Wednesday, under pressure to write daily, I had found “ I have reached the point that I am finding it harder to say things worth reading”. So, having decided to temporarily (at least) blog less frequently, what happened? All of a sudden, I thought of several good posts.
Possible explanations:
1. -the devil is helping me, so I can blog ad infinitum, ruin my health, etc., etc.
2. -it’s the “vacation effect” (explanation forthcoming)
3. -(most plausible answer) having gotten a good nights sleep on Wednesday, my mind was in “functional mode” on Thursday…..

And what is this “vacation effect”?
Many times with special children and teens, you can be working with them (on your own, or with a therapist) to try and reach some goal. It is immaterial if this goal is walking, speaking a full three-word sentence, learning to adjust the hot-water flow in the bath independently, etc. Sometimes you feel that you have been trying and trying…. And trying… and nothing seems to be going in.
So you switch gears. Change goals. Or the speech therapist tells you that she’s taking vacation next month. (And you are wondering if that is true, or if she is simply trying to drop your “not progressing” child…..) And… a week or two later… BOOM! Suddenly he is doing the long-sought-after goal, as if he has been doing it forever…..

This happens a lot.
What goes in DOES eventually appear.

Dear Readers

[image: a steaming cup of tea]
Dear Readers,
Please sit down and join me for a cyber-cup of tea.
Purim is coming, and Passover on its heels a month later. For those who don’t understand the implications of this, it means that these upcoming two months will undoubtedly be hectic ones for me. Orthodox Jewish housewives (like me) clean every corner of their houses before Passover, with a tendency to over-do than under-do.
And I have several outstanding things from before this that need to get done.
And if I want to loose weight I need to get enough sleep, and at least sometimes get out for aerobic walking.
I am sure you can see where this is heading: I have to cut down on the blog, at least for the next two months.
And actually, I am not sure that this is a bad thing. Having written 845 posts since November 14, 2007 (812 days), I have said a lot. And I have reached the point that I am finding it harder to say things worth reading. I feel that the quality of my writing has deteriorated, and I am straining to post daily. In addition, Ricki’s regular, everyday behavior is not all that interesting. [Yeah, reading how she got dressed, made an egg, etc, is interesting day after day….] But if I only write about her bad behavior, that will give everyone a VERY lop-sided view, which is hardly the purpose of this blog.
So, in short, I plan to stop posting daily, but do hope to improve the quality over what I have been dishing out as of late. For those who follow me by clicking on my address, I humbly suggest to pop in 2-3 times a week. Those who follow me through blogger will have it easier. Please bear with me, and I hope to still keep you as readers.
Have a nice weekend!

Making It Kosher….

When I was a child, one of my mom’s best dishes were part of our camping experiences: red kidney beans and ground beef. My mother used to concoct this on a “primus” camping stov. And I loved it.
As an adult I had tried to copy this dish, but had never succeeded. First I blamed the fact that I had used ground turkey. So I bought the more expensive ground beef instead. But the dish was still lacking. Finally, last summer, visiting my mom, I mentioned this. So then she informed me of her “secret” ingredient: bacon.
Well, my Mom can use bacon, but since I keep kosher, I can not. I laughed and told my mother: “Well, I don’t think I can copy the taste of that recipe, can I?”
But I did. Almost. I took some chicken skins (which I saved and froze last week just for this), and fried them to a crisp. Then I fried the onions and ground beef in that. An added bit of garlic and black pepper, and some salt, and the whole lot got thrown in with the cooked and drained red beans.
The result: a less-than-healthy dish, but a deliciously kosher food and wonderful memories of years gone by.

Mazel Tov! (??)

Ricki announced to me that “Gilli” is engaged.
“Gilli” is Ricki’s imaginary friend.
I gathered that some of the siblings of some of her classmates are getting married soon, so she decided, as “Gilli’s Mom” to join in the fun.
I keep reminding her that Gilli is not real, but she doesn’t like hearing that……

No Luck In the Kitchen

After a month, I am still waiting for the ceramic tiles I ordered for my kitchen to arrive. When I first heard that they were out of stock, but were one the way by ship, I calculated that there was still plenty of time to finish before Passover.
Then the tiles arrived early, but apparently the ship had some illegal merchandise, which is preventing the tiles from being released.
In short, I am getting rather used to working in half a kitchen, but that won’t work for Passover, so I am getting NERVOUS.

“Anything worthwhile in life”, my mother always said, “takes time and effort.” Good things, whether it is a good relationship with your spouse, a knitted sweater, good marks in school, or whatever---require imput of effort. Dieting, exercising, educating our children, etc, etc. Advertisments would like you to believe that you can get something for nothing, but it just doesn’t work that way. You get exactly what you put into it!

My Smart Daughter

Sometimes Ricki does some pretty smart things. And sometimes I wonder HOW she did something….
Ricki is sick. She’s had a cough, which has gradually gotten worse over the week, and finally I kept her home from school on Friday. Initially I had told her that this vacation from studies was for only one day, but last night as her coughing got even deeper, I decided that this morning we will be visiting the doctor, not the school. Despite her lack of elevated temperature. I have seen Ricki in the past have pneumonia without having a temperature, and when Ricki told me that her back hurts when she coughs, I got worried.
So I informed my daughter that school was not in the plans for tomorrow, but rather a visit to the doctor. About half an hour later, I noticed her school bag on the floor, and instinctively asked: “Ricki, did you prepare your school books for to marrow?”
“Mom, I thought you said that I was going tomorrow.”
Yeah. Right…
* * * * * *
Meanwhile, recently when my son’s computer wasn’t working, I noticed that he had set up a new user name on my computer. After giving him a tongue-lashing for having the audacity of doing such a thing without my permission, he claimed absolute innocence of the crime.
Had Ricki, fiddling around on the computer done it? I suspected not. But yesterday as I tried to open my word program where I keep this blog, I was informed by the computer that it was “read-only”, having been edited-protected by user “2009”. And my son hasn’t been on my computer for days.
I am always worried that Ricki will open my files and alter them. I guess I will have to set up a user name for her to keep her away from my files. But my real worry is that one day she will simply delete “windows”, clicking “yes” to the “are you SURE?” query of the computer…..

He Has No Idea (I Think)

My soldier-son is home from the army for the weekend. As always, it is comforting to have him near. Right now he is in his brother’s room on the roof, away from the hustle and bustle of erev shabbas and erev Tu B’Svat preparations. (The preparations before the Sabbath and the mini-holiday of Tu B’Svat.) He very reluctantly told me that he could not pitch in and help today; he is studying for his (late) bagrut (matriculation) exam of next week. I happily encouraged him to go study.
Meanwhile, I am listening to a disc of Chedva Levi, and she sings the song “V'Hi S’Amdah”. (This, for those who don’t know, is from the Passover seder, and is a praise of G-d who managed to always rescue us from extermination.) The problem is, not always does G-d save ALL of us. Soldiers die sometimes. And as I listen, tears run down my face (literally) and the song becomes in my mind, a plea to G-d: “Keep my son safe!”. I generally try to keep my fears in check, but this particular rendition of “Mi S’Amdah” has me in tears every time.
Now if my son would see me thus, he would be flabbergasted. He hasn’t, I suspect, the faintest idea. He knows I have fears (I have told him), but he never sees the tears.
May G-d protect all of our sons.

An Umbrella Tale

Ricki trudged up the stairs after a long day at school followed by her afternoon program. It had been a winy day, but no rain. As is usual, Ricki was hauling with her two schoolbags, and an extra nylon bag. Tucked under one arm was an umbrella, lavishly colored in bright hues, as if to chase away the dark gloom of a cold winter’s day.
The problem was that the umbrella was not ours.
Unfortunately, I am no Sherlock Holmes, and it was not readily apparent to me where the umbrella was from. I tried quizzing Ricki, but was simply treated to repeated declarations from my daughter that the appliance was her own. But, of course, it wasn’t, and I said so.
Compounding the situation was the fact that this umbrella could easily have come from any of three places:
-her school
-her afternoon program
-the neighbors (Who often leave wet umbrellas in the stairwell as they dry)
Repeated attempts at interrogating her led nowhere, and I was faced with the prospect of trying to track down the owner of an umbrella who may very well be a classmate or other special-needs child, and who may not have even been able to post a notice about the loss.
That afternoon, I had some errands to run along with Ricki, and when we reached the bottom of the stairs I noticed that she was again in possession of the pilfered object. So I had her go back inside and hang it on the stair rail, to await our return.
Later that evening, on arriving home, I noticed that the umbrella had disappeared. I pray that the umbrella was taken by it’s rightful owner, undoubtedly a neighbor. THEY are probably wondering how their rain gear fell one or two floors down, and happened to land exactly right-side up in place on the railing.

Almost Wordless (special exposure) Wednesday

These pictures are from the summer inColorado. But here nice rains have brought out some blossoms, and the feeling that soon spring will be here is in the air!

ORGANIZATION!

I once heard as a joke: the best gift for new special-needs children is a filing cabnit. And it is funny because there is a ring of truth to it. But hopefully a filing cabnit is a BIT too much....
THIS post at eSpecially Ben, writes about organizing your information. Here are my ideas, what worked for me.
First, you need to buy a display book (A4 size). It would be tempting to buy a huge one (to last forever), but don't do so. 40-50 pockets are plenty for starters, and you don't want that it should be so big as to be a pain to take with you on trips, etc.

Organizing the book:
1st page: YOUR contact information, relatives, etc. So that you have a chance of getting it back if it gets lost.

2nd page: INDEX (you keep adding to the index as you add pages to the display book). You will need to number pages as you add them, doing so even with pencil will do the trick. If you want, you can highlight entries in the index with different colors for different areas: pink (for example)for medical, blue for school and educational stuff, green for _______. (Or pink- cardiologist, green- endocrinologist, blue- hearing tests and doctors, etc.) (You can add a page to the back side of the pouch if necessary , if the first page finishes.)

Page 3: Contact numbers for doctors, therapists, teachers, etc. Update yearly (at least).

Page 4: A running timeline of events (several pages can be added to one pocket).


Page 5 on: documents

Magic Marker Monday: the "7 species of Israel"

Ricki did this homework page on the 7 special fruits of Israel, including drawing them (or their product):
(top to bottom) bread (from wheat), barley (she drew a stalk), wine (from grapes), figs (she drew 2), pommegranet, olive, dates (2). She is studying about these fruits in connection to the upcoming festive day celebrating TREES!

“Lottery” by Patricia Wood; a review

Lottery is a piece of fiction, and the main character is Perry, a young adult who is “slow” , but quick to add that his IQ is (barely) in the “normal” range. The book explores what happens when Perry wins the state lottery. When reading the book’s back cover, the statement that Perry’s Grandmother had taught him who to trust raised my hopes that I would be learning a few good ideas. That expectation was rather unrealistic, and it turned out, unfounded as well.
The book is positive in its view of the mentally-impaired, and points out very vividly their potential vulnerability. Perry mourns, struggles, and experiences joy as we all do. And as most good novels go, Mr. Perry Crandall wins his girlfriend by book’s end, and lives happily ever after.
What I found ironic was the fact that the ones Perry had to fear the most were his family (which is NOT normally the case), rather than his friends. And what I found unbelievable was the fact that all of his friends did NOT succumb to the easy task of fleecing Perry.
How many people with disabilities have friends who are really so trustworthy? It might make a good story, but as parents, we need to know that this is NOT the case. Those of us with children who have severe mental impairments, and who are leaving them money, need to set up a checks and balances system to help insure that the good of our child will stay the main concern of those who will help watch his money after our passing. The supposedly wise Grandmother, who knew the family, should have had safeguards in place to prevent the abduction of her home (after her death) from the intended recipient, Perry.
This story is cute, and can almost convince you of the good of most people. It gives voice and a very good view of the reality of sexual feelings (yet in a fairly mild way) of the intellectually disabled. Perry is a very well portrayed and believable character, as are indeed, most of the characters in the book.
[Note: This book is not suitable for most Chareidi readers due to sexual content, though mild.]

The Nieces

Ricki’s Brother and family were here for Shabbas. Ricki got along fine with her two nieces (age 2,and 4) most of the time. We had no rough incidents like last time and things went FAIRLY smoothly. Here and there they had a few squabbles, caused by Ricki’s overbearing ways, but on the plus side she helped them behave better (like making them pick up their stuff….).
It seems that this, like most areas of Ricki’s life, is a study in SLOW PROGRESS!

I don't believe this....

Since when has tefillin been concidered a dangerous object? People don this frequently on flights, especially overseas ones.
And is ethnic diversity not even taught to stewardesses? I hate to think what would have happened if, being in the middle of his prayers, he had chosen not to answer. I just can only hope that this won't lead to a ban on tefillin on planes....

The Quessing Game

Ricki was doing some math pages with me on Thursday evening. At first they were FULL of mistakes. She had been lazy, and had guessed the answers. Try explaining to a kid with a plan of things that she wants to do, that quessing will take more time in the long run than sitting and trying her best.
FRUSTRATING! Typical of her.....

Do you have a roof?

The Haiti crisis seems so far away to me. It is hard for me to comprehend the magnitude of it all. And living in an earth-quake prone zone (they keep saying we are in for a big one), I just hope that the buildings here are stronger.
I am simply trying to be damn gratefull for the roof over my head today.
A good weekend to all of you today.

The Truth Emerges

This last Saturday morning after Ricki finished her prayers, I picked up my praybook to start my own prayers.Ricki's "prayers" are usually rather short and garbled; she has a tendency to PRETEND to be praying, and quickly "finish".
Suddenly Ricki picked up her prayerbook again. "I better pray again. The first time I was only pretending...."
RICKI ACTUALLY ADMITTED TO DOING SOMETHING WRONG. I think that this is maybe the second time she has actually admitted to doing something, and it was a statement made of her own volition, without any questions being asked her. AMAZING!

Haiti

All I can say is that I am SO proud of our tiny little country (Israel) for being the ones who reacted the fastest, and got the first real hospital into place in Haiti. Some of my soldier-son's acquaintences from the canine unit are in Haiti, searching for survivors.

Mommy's New Toy - Special Exposure

Ricki is not the only one with a new camera . (See her photo HERE.) I ordered at that time a new camera for myself (a SONY DSC-WX1). It is a fantastic lettle camera. It can take nice pictures in low light (the lighting in this picture was about half what it looks like), panorama shots, and close-ups.

UPDATE: The "borekas campaign" got off to a good start yesterday. Ricki was up and ready in a flash in the morning**, and she only nibbled a bit off one borekah before bagging it and showing the clerk.)The real test will be when she finishes her four allowed borekas.

PS Further update 7:30 AM: This morning Ricki seemed to have forgoten about the borekas, and I was not about to remind her, since she doesn't get them every day, and it was raining hard (THANK G-D, we need it!). Besides, Ricki was running behind too late to also fit in a trip to the grocery.
SUDDENLY she remembered, and got very excited at the prospects of obtaining some pastry. I explained that NO, she couldn't have every day, and if she missed the car, she would get NONE next week. She reluctantly agreed. I was afraid that when she went downstairs to catch her ride, she might elope to the store, but no, she stayed put and caught her ride in time.
Gee, this just might work!

**Ricki's comments:
"I WILL make the car in time."
"Gosh, I really LOVE borekas...."

The Continuing Saga of the Borekas Bandit

Well, Ricki as of yesterday has "progressed" to not "warning" me not to look before she goes to steal borekas at the local grocery. But she was out of luck, because I was watching anyway, and saw her heading in the direction of the grocery. And to top it off, she missed her ride to school on a rainy morning.
Deciding that I have REALLY had enough of this, and explanations/ withdrawal of privileges/and punishments ARE NOT WORKING, I sat down to evaluate the situation.
What is she gaining? Her favorite food ( which she hasn't been getting, as I was trying to use them as a bribe to get Ricki to wear her hearing aid).
What do I want? For Ricki to reach the taxi that takes her to school on time, and not to steal borekas.
Contributing factor: She does not have to "answer" to the macolet man. He doesn't feel that he can disapline her, and it ia as if she doesn't realize that he is the owner.

So I decided (especially since the borekas are NOT getting her to wear her hearing aid anyway….) that Ricki can have FOUR borekas a week, as long as she:
1. Doesn't steal them
2. Reaches her ride on time.
3. Doesn't stuff them in her mouth, but puts the borekas in a bag and SHOWS the grocery clerk.
4. 4 No more than two on any given day.

So I set up with the grocery store owner a system to accomplish this, by his having to sign weekly on a card that she has (that she did not steal), as well as the amount bought on any day, (so she can see if she has any more "credit") And I sign her card that she got on her ride on time. And as an added incentive, if she doesn't steal, we will pick pot an extra treat for her each Friday. My husband is much less enthusiastic about this than I am, his main fear being that she will miss her ride. (If she does, it is not the end of the world, especially if the weather isn't rainy….) I told him that as I see it, this is the only way we can get her out of this stealing habit before it gets any worse. It will take a fair amount of effort on my part, but if it works, it will be worth it.

"By Now, You are Beyond Caring What Others Think, Aren't You?"

I was talking to a friend about our family news. Some was about some of my sons, who are not "religious", as is standard in our neighborhood.
"But you are beyond caring what others will think, aren't you?"
And, I had to admit, that I pretty much am, at least as regards my sons and my husband. But when my own short-failings come into view (ie., about my overweight), it is a different matter.
Take the other day. It was about noon and I was out running errands. I was hot, and made my way over to a small drinks vender, intending to buy as diet coke. Then I noticed that they had diet (39 calorie) ice cream bars. I bought it. But as I unwrapped it, I planned to hold the paper wrapping in my hand until I finished. Thus, MAYBE, passersby would notice that it was dietetic. Imagine if you see someone extremely overweight eating an ice cream bar, Most people would assume that they just don't care, are not trying, are irresponsible, etc. I don't want to be judged like that.
Then I grinned and threw the paper in the trash.
"You swollen-head egotist" I berated myself, "Do you really think that ANYONE passing by gives a HOOT about what you are eating, and thinks about it?!??? You are so self-conceited; you are lucky that THAT isn't as visible as the fat!"

The Missed Swimming Lesson

Thursday Ricki was supposed to have a swimming lesson. I went to her afternoon activity center to take her to the pool which is only a few minutes away from there. As we were walking, Ricki suddenly complained of a headache. I felt her forehead; she didn't have a temperature. I asked her if maybe she didn't want to go to her lesson. Her reply was to look at me with a hand motion "Are you crazy….?".
Now this type of situation is always troublesome. Is she coming down with something, or is she complaining very vocally, as she often does, over a very minor discomfort?
We arrived at the pool, and Ricki got dressed in her swimsuit. The teacher was running about fifteen minutes late, and Ricki actually waited patiently.
Finally it was her turn to enter the pool, but within moments she exited, complaining that she didn't feel well. So we came home by taxi, and after getting medicine (as she was already getting a temperature) and a glass of warm tea, it was off to bed with her.

PS By saturday evening she was fine!

"Nita" makes Her Own Breakfast

Sometimes Ricki is a real study in contrasts. "Intelligent", "spunky", "exasperating", and "how-in-the-world-could-she-do-something-so-stupid" are all wrapped up in the package called "Ricki" . Let me give you some examples.
Last Thursday I was with Ricki at the optometrist, and when the lady attending to us asked Ricki her name, she answered "Nita". Now I knew that the name comes from a film she once saw, but the lady obediently wrote down "Nita". I looked askance at Ricki, and told the lady to write "Ricki", afraid that they would not identify the eyeglasses as ours at their arrival. "Nita" protested hotly. And as we arrived to the corner by our house, I saw Ricki VERY discretely wave a "hello" to her imaginary friends, who were apparently waiting with baited breath for her arrival.
But the next morning, Ricki got dressed on her own, defrosted a pita bread in the microwave, prepared that with catsup and put it in the sandwhich toaster. And even more remarkable is that on hearing her get out a package of soy hot dogs, I called out "Ricki, I don't allow." And even though I wasn't in the room, she actually PUT THE SOY BACK!! (Eureka!!!!!)
So how can Ricki be so two-sided? Well, most of us are. And it is definitely one of the facets of Down syndrome.

Fighting the Down syndrome "Stuck-in-the-Mud" Bug

Teens and adults with Down syndrome tend (like many of us) to like doing things a certain way. And, in actuality, it is understandable. Once they have learned and accomplished a task, why in heaven's name should they exert themselves to do it in a different manner? The answer is, of course, that being "locked" in a certain behavior can often be incapacitating.
So, to those readers who have younger children with Down syndrome, try to introduce variations occasionally into the way things are done. Breakfast menus can occasionally be a bit different. The child can get dressed in a different room, outfits that are usually worn together can be "mixed and matched", etc.
One of the most important items to introduce flexibility in is the house one sleeps at. In an emergency situation at whose house would your child sleep? If at all feasible, try and have him sleep there once in a while, as a vacation. Ricki has been very reluctant for me to not be on the computer (in her room) as she goes to sleep. So the malfunction of my computer (and subsequent composing of posts on my son's hardware) has been an excellent opportunity to alter the situation for her. And I hope to do this on a more regular basis (although through choice, not necessity…).
So try and institute some variations in your child's life. It may save you a lot of problems later on.

Variety is the Spice of Life

This week I added some variety to my life in a simple way. I have several regular walking routes that I use, all (except the shortest) with one steep incline and no traffic lights. One morning as I headed out for an approximate 45 minute walk, I suddenly decided to do it backwards. This meant, however, that my steep incline would be somewhere else in the walk, and not as steep, so I elected to change the route a bit, even though it made the uphill stretch a grueling all-the-way-up-the-hill-by-way-of-steps climb. Amazingly, both my lungs AND knees held out, and the change was enjoyable. A routine task become much more pleasing, simply due to the alteration of direction.
So think about how you can transform a bit of your routine with a small amendment or change , and enjoy a bit of difference in your life!

Taking Charge

Ricki has had a problem with bedwetting, probably more due to our family's penchant for being deep sleepers than her Down syndrome. We have tried (courtesy of a pricey doctor) various methods to finish this matter, with varying rates of success. (No, we can not use a buzzer as the noise scares her and she flatly refuses to wear it.)
Last time we were at the doctor I told him, "DON'T speak to me. Speak to Ricki. Let's make this HER problem." And at home, I have religiously been making HER mark off (daily) a sunny sun or rainy cloud on the "follow up" records. Suddenly she seems to care more.
This reminds me of how I was able to get my sleepyhead son up for yeshiva (high school) years ago. I made it HIS responsibility. I purchased him an alarm clock that could wake the dead, and informed him that I was not going to awaken him. The next morning he jumped out of bed like magic. (And if he hadn't, one time being late would have done the trick as well.)
I am applying this principle in several areas of Ricki's life. She is receiving "natural consequences" to throwing things on the floor, etc. It used to be that evry time we went to her exercise class, she would throw away her hair band (used to make a pony tail), and we would travel home with her in a rather unkempt state as a result. If I asked her where the band was she would reply "I dunno." This week I called her bluff and told her that I would sit and wait until she found the band. Suddenly she "remembered" where she had thrown it, and fetched it out from behind several large pillows.
SHORT TERM this method can take a few more minutes (until they see that you are serious). Long term it saves you time, money, heartache, and energy.

"Keep on Keeping On"

"Keep on Keeping On" is one of the regular phrases used by people in alcoholic anonymous. Now I usually do not get too excited by the rote repetition of phrases, or with people telling me what I should think. But Tuesday I saw that motto mentioned in Jeane Eddy Westin's TheThin Book 2, and it suddenly made so much sense. I was planning to weigh myself later in the day, knowing full well that my indulgences (again!) over Shabbas would probably do the whole week's loss in. But this phrase reminded me that one week's weight was not that important in and of itself. Much more of a concern is that this behavior is becoming repetitive….
So I decided instead to center on "Keep on Keeping On"… including a concrete plan to prevent the same behavior next week. (Number one being to NOT make pumpkin pie for desert…..).
And, by the way, this is true of SO many things. Years ago a wise young lady (my mom) told me that many times people can go through a hard time, a bout of depression, a period of bleakness. "The important thing is to keep on doing what needs to be done, to take one day at a time." Ie., to keep on going on.
So whatever your trials are, whatever you are struggling with… just keep on keeping on. Hopefully, eventually, the path will become a bit easier, or you will grow to walk the trail of your trial with head held high and confident.
(PS As it turned out, I even lost a smidgen of weight, although it was much less than what could have been.)

The Wedding Quiz

As mentioned in yesterday's blog, Ricki and I were at a wedding Sunday evening. What I didn't mention were the interesting conversations we had as we walked there and back. \going she asked me who the groom was. I replied that I really didn't know. After a moments hesitation she suggested that maybe the girl was marrying her father. I explained that she could hardly do that because girls don't marry their fathers, and her father was already married to her mother. (This mistake was obviously do to her confusion with the word husband vs. father. I doubt when saying the sentence that she actually had the girl's father in mind.) Then we got into a discussion about "wedding halls", what a hall needs to be like, and why.
On our return trip Ricki asked me if the new couple would be living somewhere else, what the bride's new last name would be, and more.
These are all topics that Ricki has discussed with me earlier, and which she covered in classes in school in the early grades. But it seems that she was a bit unsure about them. What pleases me TREMENDOUSLY is that, not being sure, she ASKED!

Ricki and the Bride (a VERY Visible Ricki)

[Image: Ricki trying to edge in to dance with the bride at a different wedding....]
Our downstairs neighbor’s daughter was married last night, and both Ricki and I were invited to the wedding. The bride had for years been Ricki’s steady babysitter, and she requested specifically that I bring Ricki. I wondered if she realized how problematic that can be.
Ricki loves a kallah (bride). What younger girl doesn’t? But in years past, that love translated into Ricki wanting to dance ALL the time with the bride. Quickly enough I was able to teach her that everyone dances with the bride ONCE, and the remainder of the time will let others dance with the bride. OK, that she learned. But she did not yet learn (or agree to implement) that one also need not dance in the inner circle, next to the bride, at all times.....
The dancing around the bride often involves 2 or 3 circles of dancers. The inner-most circle, usually of the kallah’s friends, often involves very fast-paced, intricate dancing. The outer circle is usually a bit more slow-paced. And since Ricki (despite several attempts by me to teach her) does NOT know even the basic dance steps, her presence in the inner circle only hinders and frustrates the brides friends, who want to “fly” on their feet.
So true to form, last night Ricki pushed in and got a dance with the bride almost as soon as she entered the hall. Then she started dancing in the inner circle. Sometimes she managed OK with the fast pace, but often when anyone cut in to the circle next to Ricki, she simply shoved them away. (ie., SHE has the right to be next to the bride, but very few others.) Several times I had to go pull Ricki out from the swirling masses in order to threaten her with immediate departure.
But at one point, something interesting happened. The bride had left the women’s side of the hall for a few minutes, but the dancing continued. Suddenly Ricki found herself INSIDE the innermost circle (as if she were the bride). Circled by spinning rings of dancers, she started doing the “dancing” she loves best: with few foot moves but intricate hand motions. It always looks very impressive, and within moments several women had approached me with “Is that your daughter?” While I did not relish the idea of Ricki getting so much attention, she was having a ball, and so was everyone else. Nevertheless, after a few minutes I gestured to Ricki to get out of the center and dance with the others.
And do you want to know how much Ricki enjoyed herself? Enough that as she finally sat down for a few moments to eat, the music started up again, and without a backwards glance, Ricki scooted out to the dance floor to mix with the twirling teenage friends of the bride.

Just Like Everyone Else (Almost)

This week the next edition of the “Disability Blog Carnival is to be posted, and the topic is “Holidays”. I sat and wondered to myself “What in the world is there to write about Ricki and holidays (chagim in Hebrew)? Ricki celebrates chagim with the rest of the family, just like everyone else. Well, almost.
I remember the first year that Ricki was in a play group, and I was eagerly anticipating the fun that she would have on Purim*, usually the most-loved-by-children- of all holidays. I had lovingly sewn for her a costume of a “tut” (strawberry), and we were well prepared for the upcoming celebrations. That is, until Ricki came down with a severe case of pneumonia. Thus a few days before Purim, I was going to visit Ricki in the hospital (my husband was there with her). As I watched the carnival atmosphere, grade school students prancing to school in their costumes, tears filled my eyes as I wondered why my daughter who had so much to contend with in life had to miss out on the festival of Purim. [In retrospect, if she HAD to miss Purim one year, I was glad it was then, when she was too young, probably, to really realize what she was missing. And to the credit of the Ezer MiTzion organization, Ricki and her older sister (see HERE),(who was watching Ricki for a few hours on Purim afternoon, so that her father could go hear the reading of the book of Ester), received a visit replete with singing and sweets.]**

[Ricki dressed as a "moon" one purim, "moon" being one of the global words that she knew at that time....]


But by and large, Ricki celebrates the holidays with us, doing (and enjoying) all. She goes to synagogue (for a short while) on Rosh HaShana, with a special prayer book I make for her. She fasts (or almost does) on Yom Kippur. She prepares decorations for the sukkah, and eats matzoth on Passover. However, it DOES take preparation.


Here are some ideas to help you prepare your child with an intellectual disability for the holidays:


-matching lotto cards (picture /picture or word/picture) to introduce concepts and vocabulary
- homemade books about the upcoming holiday, so they know what to expect, pertinent laws, etc. [See HERE for an article I wrote about teaching materials. It contains instructions on how to make homemade books.] Any holiday involving the use of candles should have the topic of fires and fire safety discussed as well.
- a calendar of the day(s) of the holiday (and days leading up to it), ideally with pictures of events, so the child can see when things are to occur
- for slightly older children, a time line (similar to the calendar) (with picture cards to match) of days ( or even parts of days), so he can match the pictures to the time, to teach the sequence of events.

[Picture credits: Seder night "Iturei Halacha"/Burning chometz a Hebrew book "___and Molly (I think) Prepare for Peasch" / Search for chometz from drawings of Yoni Greshtein. Please do NOT copy. They are here purely for educational example, not for use. I allowed myself to use these images for Ricki's use, as I PURCHASED the books. If you want to use the images, you should do the same.]


These items take time to make, but are good for use over a few years (laminate them!). [ I get out every year for a quick review books I made for Ricki a few years ago explaining detailed laws of Passover, for example.]

*Purim- a Jewish holiday in early spring, celebrating the deliverance of the Jews from annihilation in the time of Ester (see Biblical Book of Ester). The holiday is celebrated with gifts of food to friend, relatives, and neighbors, gift of alms to the poor, and the reading of the Book of Ester. Children generally dress up on this holiday in costumes (as well as at school parties in the days preceding it).

** [Her older sister, though, unfortunately witnessed that day the arrival to the hospital of a victim (“moderately” hurt) from a suicide bombing. The sight was not pretty, and it was not a very auspicious end to her Purim, to say the least.]

Sometimes I Get “Fed Up”

Yesterday morning, when I sat down to write the late-afternoon post, I noticed SEVERAL items thrown in back of the computer.

Papers, a soup bowl, a pair of underpants.....

Now, I had moved the computer and cleaned there THOROUGHLY just 2 days ago in anticipation of a computer technician’s visit. And always (when I see the stuff) I make Ricki clean up whatever she throws on the floor, whether it is behind the computer, next to the stove, or wherever.
Obviously I left the discarded items there and made her pick them up on her return from school. But sometimes I just get so “fed up” and exasperated with the innumerable times I need to intervene with Ricki. The fact that she needs behavior training on SO many areas... it just makes me tired sometimes. (But only occasionally.)

Sneaky Snack #3 – Caught Red-Handed

Well, I see that Friday seems to be the day that Ricki loses control (see HERE for last week’s incident), because again today Ricki went to the grocery without permission. Not only without permission, but expressly against my orders.
I first suspected the impending larceny when Ricki said “I am insulted that you watch me from the window.” Now this is a girl, who for all of her contrariness and drive for independence, still loves to wave goodbye to me as she gets into the school’s cab. So her statement made me VERY suspicious. I warned her very clearly that she was NOT to go to the grocery.
To Ricki’s bad luck, I was planning on going “walking” and getting a few thousand steps in before starting my pre-shabbas (Sabbath) preparations, and I arrived downstairs moments after she had gone down. And she was nowhere in sight.
So I promptly went to the grocery and caught Ricki red-handed with a bag of three (3!!!) borekas (borekas is the Hebrew equivalent of the Yiddish knish, a potato pastry... and a calorie bomb....), several pieces of marmalade, and a small chocolate bar. I promptly confiscated it, and as Ricki rejectedly left the store, I whispered to the cashier to charge it, and I would return later to collect it, not wanting Ricki to know that I had brought the bag home. (Her brothers will get the “windfall”.)
Obviously my word was not enough to stop her, so she will need to get a punishment this afternoon, both for going without permission, AND for not listening to me. Never a dull moment with this kid.......

The Little Boy with Down Syndrome

Well, Ricki’s last pair of glasses broke, so after her swimming class yesterday evening we went running to the optometrist to order a new pair of eyeglasses. As we were waiting, my attention was drawn to a cute 5 year old boy with Down syndrome. (And his 2 sisters were eying Ricki constantly. After a while, I mentioned to Ricki, “You see that little boy? He also has Down syndrome.”
-“No he doesn’t.”
-“Ricki, look. Can’t you see?”

And I could see that she did. So she started a conversation with him, and with his sisters. For once I felt that she was comfortable with the reality that she has Down syndrome.

The “Pigtails”

This morning Ricki brushed her hair (more or less), and then came to me with several elastic bands. Please comb my hair into “pigtails”, she pleaded.
-But Ricki, you know that most girls consider “pigtails” babyish....
-But that’s what I want. Only “pigtails”

I suddenly understood:
-Who in your class wears pigtails?
-Ruchama (her best friend)

Figures. Just like any other teenager.....

RICKI's a photographer- Special Exposure Wednesday!

This is a picture Ricki took!

Living With the “I’m Hungry” Genie (ie, Getting Back on Track)

The only “Genie” associated with weight loss, dieting, and food choices is the “I’m Hungry” genie, the one who somehow “magically” helps you regain what you have lost. There are no easy sudden miracle genies to help us loose. And why is that? Because in dieting, you are fighting against the body’s natural tendency to insure adequate calorie intake. So if you want to lose weight, you have to learn to live, sometimes, with that inner voice that is ‘warning’ you that your fat reserves are being depleted.
So, almost invariably we hit periods where we slip a bit in our exercise/dieting routines, and if that is ignored, one can slip back very quickly to the atrocious eating habits one had before starting one’s diet. (I had a period like this on and off for the last month.) So , since the initial damage is usually not too bad, it is easy to ignore the slip, and continue the downward spiral. One may often be MENTALLY aware that they are making bad choices, but suddenly the motivation and “stick-with-it that one had a month or two (or three) earlier seems like a wispy, effervesant smoke just beyond our grasp.

So how can we deal with this?

1. Discover and admit to the slip early. This is done by instituting a self monitoring system, whether it is daily logging of foods eaten, calories, or a weekly weighing.

2. Check if you are slipping in any of the things that contribute to the problem (See HERE to learn about problem evaluation. If you haven’t taken the time to make a good evaluation, now is the time.) I, for example discovered that I was not sleeping enough, not drinking water, and not doing aerobic exercise. So it is no wonder that I had trouble dealing with the genie.....

Correction of the contributing factors, and reinstating monitoring will often do the trick. If it doesn’t , one may need to reevaluate and reexamine the problem’s evaluation. Also consider giving yourself prizes for compliance.
Hopefully, all of these measures taken together can give you the ability to climb put of the overeating hole, and tone down the “I’m hungry” Genie, to a point where he is manageable.

The Family Gathering

A large segment of our family from overseas has been visiting Israel, and we have held several family (or part-family) get-togethers over the last week and a half. At the first family meeting, Ricki spent much of the evening clutching the hand of her grandmother, which I am sure was not appreciated after a while.
Saturday night the biggest party was planned, so I outfitted Ricki with her digital camera and several batteries. She was not the only person there with a camera, so she felt right at home. She spent the evening drifting around the room, clicking hrt shutter shutter, and trying to have people pose for her.
The end Result?
Most ot of her shots were pretty good, and she was kept busy enough that she (almost) didn’t look at the food.

RESOLUTIONS

Since many people use early January as a time to make new resolutions, I would like to make a few comments.
Resolutions once a year generally just don’t work. And the year that I lost the most weight was a year that I did NOT make a weight-loss pledge. It was the year that I decided to take care of myself. Losing weight was a natural result of an overall effort to listen to my body and to take care of myself.

RESOLUTION GUIDELINES:
1. Pick one SMALL thing to work on. Small changes can bring results if you actually DO them. And one small change added to another (and another) over time, can be a very effective tool.

2. Pick a goal that is an action. Rather than “lose 30 kilos” (the result of action), choose a goal like:
-measure portions at lunch
-take an early morning walk on Wednesday and Friday
-drink 8 cups of water daily
-keep a food diary

3. Implement a monitoring system. No resolution will work if you do not have a monitoring system to remind you to keep the change going.

4. Decide on prizes, and mark them in your calendar, which you will buy (or give) yourself during the year if you consistently keep your resolution. It can be a material item or an activity. You can give yourself big prizes on occasion, or even small daily ones (any day that you do a half-hour of aerobic walking you reward yourself at 12:30 noon with a half-hour of reading time, for example.....).

GOOD LUCK!

My resolution is to be in bed by 1 o’clock AM every night.

The "Hamster" ?!??

Several years ago I was an active member on the “UNO MAS” (Down syndrome) website. At one time there was a person who posted there about her roommate who had Down syndrome, and she nicknamed her “Hamster”. This nickname did NOT go over well with the group at Uno Mas, who felt, correctly, that to constantly call ones roommate by a rodent’s name was degrading and insulting.

Fast Forward to.... yesterday morning:
I confess that as Ricki left the house yesterday morning, to catch her ride to school, the word “Hamster” came to my mind. You see, “Hamster” in Hebrew is “O-ger”, a word implying “hoarding”.
The hamster stuffs his pockety cheeks with food and takes it with him as he scurries home. And that is EXACTLY the image that came to mind as I saw Ricki gathering FOUR bags to take to school. Friday is a short day, and her black school bag could easily handle the items she would need for the morning. If you want to stretch things, the black school bag and a small plastic bag for her mid-AM snack would be ample.
Now often I have to contend with this type of scenario. I have frequently gone through her bags with her, explaining that there is no reason to take her entire photo collection to school, other assorted unnecessary items, etc...
But as I gazed with chagrin, I saw Ricki gather 3 large shoulder bags, and a rectangular artwork-case as she prepared to exit. I don’t even know what they all contained. This was the largest collection of items that I had witnessed to date. If I had stopped her to examine the contents, or to try and reason with her, she would have missed her ride. (At least she would not be on the street like that, only at her school.)
And I confess that at that moment, my convenience overrode my natural inclination to not let Ricki out the door looking ridiculous. So that is why “hamster” came to mind......

An Independent bus Ride OR The The Sneaky Snack: Part Two

Tuesday evening, Ricki came home from music class, this being the first PLANNED “bus ride alone”.

The music teacher called (a bit late) to say that Ricki was on her way, having seen her get on the correct bus, and mentioning to the driver where Ricki needed to get off. (ie, not THAT independent a ride, this first time....).I quickly sent my son to meet her at the bus stop. But fifteen minutes later he called me from his cell phone to state that she had NOT arrived.
So where in the world was she?!?
Did she come on an earlier bus, arriving minutes before my son did? If so, where was she?
Did she get off the stop before/after? Again, if so, she should be home already!
A few minutes later, she showed up downstairs, and we all breathed a sigh of relief.

Then I noticed the roll.
“Ricki, where did you get the roll?”
“I dunno....”
“Where did you get the roll?!?”
“in the grocery......”

So the roll (and chocolate and marmalade....) were confiscated, and Ricki got a rousing “telling-off”.
I hope that this is the end of this episode of a “sneaky snack”, and that grocery store visits don’t become a habit......

The Sneaky Snack: Part One

Tuesday morning, just before Ricki had to go downstairs to catch her ride to school, she remembered that she wanted something to eat. She had a sandwich packed to eat at 9am, but suddenly she was asking: “What in the world will I eat for BREAKFAST?”
I told Ricki, that she would have her sandwich for breakfast. And I suggested a fruit in the meantime. But she didn’t want. Then, suddenly her face lit up. “I know! I’ll go to the grocery to buy a sweet.”
Me: “Oh no you are not! One, you don’t need sweets, and two, your driver is arriving any minute and there is NO TIME to go to the grocery store!”
So Ricki went downstairs. However, as she went out the door, she said “Don’t watch me from the window, OK?”

HUGH?!? Why not? Immediately I became suspicious. I stood at the window, but one step inward, hoping that Ricki wouldn’t see me from below. I saw her exit the building, scan the window for my presence, and turn in the direction of the grocery store which is a short block away. Immediately I called her, and ran downstairs to insure that she would stay put until her ride came. As a funny aside, I realized that her intellectual impairment, for once, was an advantage for me: She was not smart enough to camouflage her errant acts effectively.

Finally.... (Special Exposure Wednesday)

Finally, a picture of Ricki with her youngest nephew!

“But We HAVE That Disc!”

During Chanukah, I took Ricki one day to a musical-type of production. As we were leaving, Ricki saw that they were selling cassette tapes and discs from previous performances. And since this group is one of the better ones, we had all but one of the plays in our sound collection at home.
Go tell Ricki that! The discs had different pictures on them from the tapes of the same play, and thus Ricki could “see” that they were selling items we don’t own.
“Yes, Ricki, we don’t have the tape, but we DO have the disc!”
“Ricki, we DO have this tape; you just never saw the outer cover....”

At least there was ONE that I could purchase, and that mollified her a bit....

The Little Things- Making Things Right

I am knitting a sweater for my new grandson, and since I knit rather slowly, it was not ready, as I had hoped, for his circumcision at 8 days old. Last night I realized that if I don’t finish it soon, the growing baby will outgrow the sweater before it is made, or soon after. So I decided to work on the sweater for several hours, and to try to nearly finish it.
However, when I picked it up, I suddenly noticed that about 6 rows down I had made a mistake, one that really ruined the lovely design. A small mistake, but never-the-less, a definite error.
So I unraveled several rows, reknitted them, and then discovered that I had started the pattern in the wrong place. This time the problem was less unsightly than before, yet visible if looked at. Again I unraveled several rows, and reknit them. So at the end, I reached the same point that I had started at, but with the errors corrected.
Knitting is like that. If you want to have a finished product worth the time invested, you need to pay attention to detail, correct small mistakes as they occur, or as soon as you notice them. Because even small errors can make the finished product unsightly.

And isn’t it the same way in real life? Very rarely do we have major nissiyonot (trials) to deal with. Usually our choices have to do with the little things.....
- Tell your child that you didn’t mean what you said; it came out wrong.
- Make that cup of hot tea in the morning for your husband, as a kindness.
-Skip that second portion of potatoes.
Yes, it is generally these little things, the things we generally don’t notice (and think that others will not praise us for....), that make up the fabric of our lives. And it is stitch by stitch, choice by choice, that determines what OUR finished product will be.... whether it be in the form of our relationships, our diet, or anything else we wish to accomplish!

The Lady’s in a Hurry!

I caught Ricki the other day coming out of the shower, wearing her (soaking wet!) bra. Now I know why her shirt often is drenched after a bath. I had thought that it was her hair, even though the hair only sometimes seemed wet enough to wet her blouse. Now I realize that sometimes she simply put the blouse on over a WET bra.
Putting on a bra is the hardest part of Ricki’s morning routine, and she apparently found a way to speed things up!

The Store Manager

As I mentioned yesterday, Ricki had dental work done on Tuesday. But since the work took just a few minutes, the anesthetic wore off quickly, and we were finished within an hour of our arrival. And since the hospital is near a certain store that I wanted to go to, I decided to stop there, Ricki in tow, on our way home.
The store is a big one, and we spent the better part of an hour there. Ricki kept wandering over to the racks containing workbooks and discs that the store had on sale. She asked me to buy her several things, and I did agree to buy one item, but Ricki accepted my “NO” as well, when I gave it. (OK., she would ask me a second time, just to make sure, but she didn’t make any scenes and gracefully put back several items.)
One of the items I purchased was a utility closet, and after paying, I went to the manager’s desk to arrange delivery of the item (I do not have a car....).
After I asked the cost of delivery, the manager said quietly “Can I ask you something?”
Me: “Yes.....”
Manager: “Who is the girl with you?” Is she your daughter?” (Ricki was a bit away, out of earshot.)
Me: “Yes, she is.”
Manager: “Is this closet for her?”
Me: “No, but it will free an older closet for her.”
Manager: “So I want to suggest that I deliver it free of charge.”
Me: “Well... maybe half-price?”
Manager (pausing)... “Don’t misunderstand me. Not out of pity. But earlier I noticed her and I was really impressed by her behavior. I wanted to offer her a gift, but I didn’t because I didn’t know how she would react.”
Me: “Well, I am VERY glad that you didn’t offer her a gift, as I would have made her refuse it. I am teaching her that she is not allowed to accept gifts from strangers.”
Manager: “I suspected as much. But I would like to give you a discount..”

And he did. And the “half-price” he quoted was, I am sure, well under 50%. Yet I agreed, because the price was enough to cover the actual cost of the delivery.

But dear reader, what struck me the most was the progress Ricki has made. If you go back to my earlier posts, like these, you’ll see that she was far from what the manager saw Tuesday morning. Eureeka!

The Fast

Tuesday, Ricki missed school because she needed to have some baby teeth pulled. The baby teeth were not falling out on their own, and Ricki’s dentist decided that we had no choice but to full three of her baby teeth so that the permanent ones could come in (and come in straight).
Ricki is too scared to undergo dental treatment without general anesthesia (we’ve tried “laughing gas” without success), so she would need to be fasting from midnight the evening before the treatment. This being the case, I asked for an 8 AM appointment, as past experience has taught me that if Ricki realizes that she is supposed to fast, she will immediately develop a terrible thirst, and it is very hard to keep her fast intact.
As Ricki was putting on her coat to go with me to the hospital dental clinic, she asked “Where’s my drink?” I explained that since she was going to get anesthetic, she needed to fast. I told her that drinking and eating before anesthetic is very dangerous.
“Oh. OK.”
Gee, my daughter is growing up! (But I will still ask for an 8:00 am appointment next time. Once is no proof for the next time.....)

Another view of the lovely Colorado landscape!

The Sassy Teen

Well, the other day I think I finally met a young adult with Down syndrome who is as self-assured yet temperamental as Ricki is. I was at a short study day regarding Down syndrome, and on the way home by bus I was joined by a mother and her 20 year-old son. He was bragging about which car he wanted to buy (but when I asked him where he would get the money, he didn't answer). HE WAS DRESSED VERY NEATLY AND LOOKED OH SO CONFIDENT. THE INITIAL IMPRESSION HE MADE WAS IMPRESSIVE. But slowly I noticed things that I did not like so much. His mother paid his fare (at 20 I would expect him to have his own bus card), and he seemed a bit aggressive. He stood in the aisle swinging a stick rather than sitting. Suddenly Ricki started looking SO much more grown up in my eyes.
To make a long story short, maturity doesn’t happen by itself. You need to educate and work on behavior, being consistent. THERE ARE NO SHORT-CUTS!

"Did you Come to Buy?"

The other day I had several errands to run, and it being Chanukah break, Ricki went with me. She was, it seems, a bit bored, and interested that I should get her something.
Managing her in the post office and pharmacy was not all that hard, but our last stop was a small “five and ten” type of store, where I had popped in to buy a vegetable knife.
This store is one that is packed to the ceilings and with crowded isles. One can barely move in it. So ALL sorts of fascinating toys and trinkets were dangling in front of Ricki’s eyes, and she did not hesitate to request their purchase.
I refused, having warned Ricki in advance that we were only buying a knife in this store. She tried again, simultaneously effectively blocking my access to the drawer where the knives were.
Back and forth we discussed/fought. Ricki insisting that I buy her something, and me calmly repeating that I was NOT purchasing her anything here.
After a minute of this (and not more), the owner asked if I had come in to purchase something or not. If there had been another store within a few minutes walk that carried the knives, I would have left, but instead I just answered, “Yes, when my daughter lets me get to the drawer.” SHESH! His store was empty. Am I really the only customer that tells their kids “NO”? Probably not. But when a tiny 3 or 4 year old does this, you can walk around them. When a hefty Ricki is standing her ground, it is a different matter.
In the end, Ricki gave up, I bought the knife, and we let, trinket-less, towards home.

Soya and "Vitamins"

Ricki has a definite problem with food. That is not surprising, as most of us have issues with overeating, and one can hardly expect her to do better than the rest of us. Yet sometimes the utter absurdity of her cravings absolutely floors me.
Her main cravings are for soya patties and bread. Thus, I have demanded that she ask prior permission before cooking soya patties, but she tries to sneak them anyway on the side. The other day I caught her with THREE patties, and needless to say, she got more than a “tsk-tsk”, but an immediate closure of the computer (which she was viewing a disc on).
And the day before that as I sat down to eat my supper at 9 pm, Ricki groanded that she had “not had supper yet”. This despite having eaten a soya patty with THREE slices of bread an hour before……
So, in the meantime, everytime I want to eat more, and don’t, I mention aloud that I want more, but am NOT taking, because I “choose to eat healthy”. Maybe that will help. But maybe not. In the meantime, whatever Ricki wants to eat has “vitamins”, and whatever she doesn’t want is “fattening”.

The “Queen” of the Park

[ Note to Americans: Today was Shabbas in our town. There is no traffic, and the parks are filled with mothers and children. It is much safer than sending a child outside in America. ]
There is a children’s park about a block from our house, which I sometimes let Ricki go to on her own on Saturday, as long as it is an hour when I know that the park will be full of mothers and families. So today, when I went to lay down for a nap, bored Ricki asked me for permission to go. I eyed the bag of sand toys she had packed, and explained to her that sand toys are inappropriate for someone age 15. So she gathered her large several-girls-can-jump-together length of jump rope. It was 1:30 pm.
-Ricki, I want you back here by 2:30. Ask a mother there the time, and when she says 2:15 or 2:30, come home.
She agreed, and went off happily.
Well, 2:30 came and went (as I knew it would. In real terms I expected her back at 3:00). At 3:15 I walked over to the park to see if she was there. (If not, I would have gone to check at her best friend’s house.) I was not really worried, assuming that she would be home soon, yet decided to check out on my own anyway. [I know from experience that Ricki doesn’t go wandering around, only to places that she knows, but she can go to a friend without notifying me. I am trying to keep an eye on what she does without smothering her. And shabbas is the only day that she really has the opportunity to go to a friend on her own. (Sometimes it is hard to know where to draw the line between being a responsible parent and encouraging independence.)]
Well, I found Miss Ricki sitting on a bench, surrounded by a bunch of younger girls, one of whom I overheard saying “XXXX went to get you some juice.”
Yes, Miss Ricki was obviously sitting court, getting waited on hand and foot. Well, I broke that up FAST, telling Ricki that if she wanted juice she could jolly well walk the 5 minutes to our house and get it herself.
Guess who will be going to the park next week as chaperone…….

Ricki and My Vaccine

I took Ricki to be vaccinated against swine flu a good two months ago, as she is considered high-risk. [Individuals with Down syndrome are high-risk even if they have no heart or weight problems, due to their narrow respiratory passages and their impaired immune system.] However, I was not able to get the vaccine until yesterday.
I had set up an early morning appointment, because I was planning mid-morning to take Ricki to a play in honor of Chanukah. A few minutes before leaving the house, Ricki expressed a desire to join me, apparently not wanting to stay home with nothing to do. So I agreed. On reaching the bottom of our stairs, I suddenly realized that it was a bit later than I had thought, and that we would have to walk quite quickly in order to arrive on time. Si I urged Ricki to speed up, and when she didn’t, I walked ahead of her. This had the desired effect within a minute, as Ricki ran to catch up.
Reaching the clinic, they were amazingly organized and received me on time. Then Ricki insisted on holding my hand, so that I shouldn’t be scared.
-“But I’m not scared….”
But Ricki was seemingly reveling in the role of being the “support” figure, so I let her.
Later, as we headed towards home, Ricki suddenly got the “BIG GIRL” bug. Rather than walk with me, she ran ahead some 30 strides, and constantly checked to see that I wasn’t catching up on her. (I confess that at one point I took a short cut just to peeve her, to discover that I was a bit closer………….)
At home I told her that big girls can also walk with their Moms; I had missed her company. And even though she agreed with me, I doubt that it will do any good…..
But I find the contrast of “hurry-to-catch-up”/hand holding/run ahead rather interesting, don’t you?

Ricki’s Friend Meggie

Ricki goes to a weekly “chug” (club) with several other intellectually impaired teens and young adults. (All have Down syndrome except for one, Meggie. Meggie had multiple problems, including a crooked back.)
Last week Meggie. died of swine flue. Most of the girls in the club don’t seem to really understand, but Ricki does. Having lost her grandfather last year (and seeing in our visit in the summer that he was no longer present) seems to have made the reality of death more concrete for her.
Meggie was not a high functioning young adult, but she always had a smile and was very friendly. She used to disturb me when I was trying to get some paperwork done during club hours, with her many comments and questions. Now I miss her.
Please get vaccinated against this flue. Please.

A Laundry Story

Ricki: -“Mom, I put my clothing in the laundry.”
Me to myself: Oh, GREAT ! Not on the floor. But did she put each color in the right basket (darks and lights separate)? “Oh, let me see!”

I SHOULD HAVE KNOWN BETTER.

I arrived in the washroom to discover that Ricki had taken out the half-dry laundry from the dryer, sticking it into a basket, and had put her dirty clothes in the dryer, turning it on.

And she was SO proud of herself.

I deserve that for not teaching her more about laundry earlier.....

Nobody Can Fix Your Life for You

The last week and a half I had been slowly slipping off my diet a bit here and there. And what worried me the most about that was the fear, well-founded, that unchecked this slight deviance would become a major backsliding and going off the diet.
Finally, after a week or so of continued slight over-indulgences, I said “ENOUGH!”, and started again to carefully monitor my intake, and return to my walking (which had also gone down). I decided that it was up to me to to take charge of the situation.
The next day, after not having opened “The Thin Book 2”* for a week, I opened it up. She wrote about taking responsibility for your choices, adding:
“Nobody can fix your life for you.”
Well, isn’t it true! I don’t care what diet group you are in, the ultimate determination of whether you stick to your diet is the choices that you make.

PS What was my reward? Yesterday I saw someone who hadn’t seen me since the summer, and she NOTICED the change. (At long last! Someone noticed!)

The Late-Night Excursion

Friday night, as an exhausting week drew to a close, I was more than tired. As it happened, we had some company for the evening seudah (meal). Nevertheless, since shabbas (the Sabbath) starts early in the winter, after our guests left it was still pretty early. For once, I did not go out walking, but opted for the more prudent choice after such a hectic week: I went to sleep. Ricki was still wide awake, and wanted to go out and play. I warned her that to do so was dangerous, and that I did not allow her out the front door. So she took several books out to read, and I went off to catch up on some sleep.
A few minutes later my husband woke me: “Where’s Ricki?”
He had searched the house, and she was not home. A glance out the window showed us that she was sitting alone outside in the windy weather. Needless to say, she was called home, “caught hell”, and sent to bed. But a telling-off was not all. On Saturday morning and noon I made her eat alone by herself in the kitchen, away from the family. Because I know that wagging a “tisc-tisc” finger at her is not enough. She needs some feel-it-in-your-guts consequences.
And next week I better stay up and go walking.......

A ceramic Chanukkiah (Hanukah Menorah)

This menorah has seven "broken" jugs of oil, and an intact one (far left). And I made it! When I showed it to my son (who I was giving it to, I explained the jugs, and he asked "Where did you get it?"
-My ceramics class....
-YYOOUU made it?!!!!!?

Yup, I did! (Grin)

Happy Chanukkah!

Tonight starts channukah, so I would like to refer you all to the presentation I made last year (see HERE). I hope it's good enough to enjoy for a second time around...

Ricki’s First Independent Bus Ride- part 2

It was all set up for Ricki to be picked up by her music teacher after her regular afternoon activities by the new music teacher (rather than coming home in a group car), to study music, be escorted to the bus, and then ride the bus home alone. But then a wrench got thrown into the plan: the driver who was to take her to the regular afternoon program brought Ricki home by mistake. And there was NO way that I was going to walk her over in the pouring rain (especially since I had a cold). So I cancelled the music lesson. We agreed that if possible, she would do the whole plan on Tuesday.
On Tuesday morning, I told Ricki that she MIGHT have music, and if so, the teacher would pick her up. [A note here: it is possible that I did not make it clear that the teacher would pick her up from the afternoon program. I DID mention it, but since last year her music teacher picked her up from our house, I did not emphasis the change enough to register.]
Well, from the moment that Ricki arrived at her afternoon program, she told the staff that she has to “go to music”. And somehow, some way, she got out of the locked doors and ran away. And took the bus home, alone. She walked in the house almost crowing with happiness: “I rode the bus by myself!!!”
Yes, she certainly did.
I’m proud/angry/exasperated/ all at once, and have to say that I am not surprised one bit.....

Ricki’s First Independent Bus Ride- part 1

For several years now I have let Ricki sit by herself on the bus (ie, separate from me), and for about a year she has been handling (on and off) her own ticket. However, I have never let her ride the bus entirely alone. This is because I always feared that she might not manage alone on the bus is something out of the ordinary happened. However, as Ricki is supposed to start with a new music teacher next week, and it is most convenient to let her ride the bus alone, I decided to take the plunge.
With this in mind, I sat down with Ricki last week and spoke to her about various situations that could arise on the bus.
-What if a boy stole your bus ticket?
-What if you miss your stop?
-What if a boy touches you?
-What if the bus stops for a bomb scare or changes its route?

We spoke about solutions , and I felt that she is reasonably ready.
So we planned that when Ricki starts music, she will be picked up by the teacher, and she will return home alone by bus.
(to be continued)

“All by Myself”???

Ricki’s school teaches their students to sew, and their first project was a simple skirt. Earlier in the year Ricki had brought home a piece of scrap cloth with razor-straight rows of machine stitching on it, and she told me that she had sewn the rows herself. I was impressed. I was expecting, however, that the eventual product would not be so nice. But perhaps rather sloppy work (especially since “sewing” is the only class Ricki complains about not liking).
Well, this week the skirt finally arrived home, and it was beautiful. I realized that even if she received extensive help in making the garment, the goals of work on coordination, fine motor movement, working on a task to completion, and pride in her work were all still completed. I am sure that as she gains experience in sewing, the hands-on help will be less, and she will slowly gain a certain level of proficiency.
Also recently Ricki brought home a craft article (see yesterday’s post HERE), and I was unable to know exactly how much help had been given (although I suspect that it was only guidance, and not hands-on work). This school does not go in for “babysitting” type of projects.
The problem is not limited to special-education students. One also gets children coming home from kindergarten with art projects that leaves the parent wondering “How much of this did my child actually do?” Parents claim that they want the artwork coming home to be the product of their child’s hands, yet the teacher who can send home nice projects is obviously a step ahead publicity–wise than the one who send home only pages of scribbling. The trick is to find projects that the child can do which still look reasonably nice. (And are within one’s budget....) But a quick trip to your local crafts store will show you that today this is not so hard. Yesterday I was in a local craft shop, and the number of easy yet nice-looking projects were plentiful. I bought two stencils of Chanukah-related designs and for my grandchildren, precut wooden dreidels (tops) ready to be painted. I passed on the ready-to-be-painted wooden menorahs (candlesticks), which being of wood I hope are meant only for decoration and not for use. The store also carried pre-cut sponges to stamp-paint menorahs, candles, and dreidels. In addition I already have at home a cookie-cutter in a dreidel shape, in two sizes, one of which I set aside to use to cut play-dough with.
So was it “all by myself”? Still often a puzzle.....

Magic Marker Monday - Kever Rachel

This is an appliquéd picture of the tomb of Rachel, which she made in school. The school takes great pains that the art projects they do should be ones befitting teens, and not childish, which I think is GREAT!

for more of "magic marker monday" go HERE

One of My Proudest Moments....

My eldest daughter is the sibling who has, over the years, seemed to feel most negatively about Ricki. Part of this was undoubtedly due to the fact that she had been the most excited about the idea that she would have a sister (my other children are all male), and the disappointment of Ricki’s diagnosis hit her very hard. She did not take Ricki to functions where one is expected to bring a younger sister, and took, instead, her niece. (And I never made an issue of this.) As a teenager, she swore up and down that when SHE got married, she would do all the pre-natal testing in the world. So when she got pregnant I purposely did not ask her about whether she had done a triple screen, as I preferred not to know the answer.
Then last night, in the delivery ward, they asked my oldest daughter why she hadn’t done a triple screen. She looked the doctor in the eye and said:
“Doctor, I have a fifteen year old sister who has Down syndrome. I love her dearly. I can not imagine for one minute what my life would be like if my mother had chosen not to have her.”
Incredible!

Mazel Tov!

I have several things I wanted to blog about, but they will have to wait. Thank G-d my daughter gave birth last night to a (healthy) baby boy, and since I was up all night I think I will have to go to sleep.....
[All my other grandchildren are from daughters-in law (ie., I was not at the birth), so this is the first grandchild that I was at the birth for. What excitement!]
The funny thing is that Ricki refuses to believe that her sister could actually be a mother!

UPDATE Saturday night, 5th December

It turns out that my soldier son has changed his mind about Gilad Shalit. (See post a few days back.) He says that the released terrorists are not likely, having tasted prison, to return to actively doing terrorists attacks. And the Arabs are ANYWAY going to capture soldiers if they can. But if they can hope for a big swap the MIGHT not lynch the soldier.
This problem is too big for my head. I am uncertain what is really the correct thing to do. There is no 100% good way out of all this. But we ALL agreed that as long as the Arabs do not allow their prisoners to see the red cross or family members, the prisoners we hold should be denied family visits, and let their families put a bit of pressure on the Hamas and Palestinian authority.

The NICE Sweater

This week I bought myself a NICE sweater. Now I havea perfectly good sweater, but I bought this second one because I like it, and I do NOT like my previous one.
So if you ask "So why did you buy it?" , the answer is simple. When I bought it, this sweater was the only one I could find that fit me. Imagine only coosing clothing for its fit, and buying what you don't like.....
Of course, my present choice is also pretty limited, and it was a matter of luck that I liked it. (Except for the buttons, which I can change.
I am waiting for the day that I will have the option of going into almost any store , and search for what I REALLY like!

A (Bad Mood) Conversation With Ricki

Ricki was in a bad mood the other night, due to my insistence that she carry out some responsibilities. This is a conversation we had.
Ricki: I’m sad.
Me : (silence)
R: I’m angry.
Me: That’s OK, you can be angry...
R: Oh common! REALLY! (eye roll)
M: I’m sorry, but I have to educate you.
PAUSE
R: Don’t speak to me.
The phone rings. I answer, speak a few minutes to one of my married sons, and hang up.
R: Who was that?
M: Your brother YL
What did he want?
M: I thought you didn’t want to speak with me.
R: NNUUUUU (Oh, really, come on......)

I had some trouble keeping a straight face there at the end......

Getting Old?????

Yesterday was my birthday, and I am amazed to find myself at 58! When I was a teen, I thought that 30 was "adult", and "40" middle-aged, and "sixty" was pretty old. Well, when I hit 30-40-50.... I kept redefining my definitions.Its not that I think "old" is bad, but I don't FEEL old. In fact, as a result of my walking and weight loss, I feel younger than ever (almost... I am ignoring here my bad knees). OK. To be honest, I realize that I do not have the stamina I had at 18. But I have a lot more than I had at 45!
[Actually, a good question for discussion would be: “What is feeling ‘old’?” Our “love-youth society have perhaps led us to believe that growing old is not a positive thing, while in many ways it may be!] And in a way, I DO feel "old", in that I feel I have a vision and maturity and wisdom that most young adults have yet to gather.
But at almost-60 I am not willing to consider myself "old", rather "middle-aged" (even though some voice from within is whispering in my ear that I have undoubtedly passed the midpoint of my life span.......). I wonder what I will feel like at seventy????
And I look at the older people in my life who are WAY fitter than I am, and realize that the only real problem is not years, but how you feel!