Saturday, January 31, 2009

The Magic Seven

Normally my newly-drafted son David would not be home from basic training for Shabbas (Saturday). [I know that this sounds weird to Americans, where newly-drafted soldiers disappear to far-away bases, not to be seen for long periods. Israel is so small that it is hard to defend. But the upside is that soldiers make it home a lot more easily.] But since his father is in mourning, our son asked that they make an exception, so that he could perform the mitzvah (good deed) of consolation. His commanding officer (a lady!!) said that she’d look into it. Shortly after, she told him that not only could he have the weekend off, army regulations specify that he would get most of the week off as well.
So after only two days in the army, our son arrived on our doorstep Thursday evening, proudly wearing his uniform. He told us about his two days, mentioning in passing that for any minor infraction, the punishment was to do seven push-ups.
“Seven push-ups!” snorted his younger brother, ”That’s no big deal!” And he dropped to the floor and commenced doing seven. As he finished, and got up, his soldier brother barked “Hey, you put the wrong foot in front now! Another seven!!” At that his younger brother began to understand that basic training can be a grueling process.
On Friday afternoon, David was helping me in the kitchen. It reminded me of the Mr. Clean commercials from my childhood: He was like a white whirlwind of action. He commented: “You know, I already see a difference in myself. I don’t feel like being lazy.” And it was true.

Friday, January 30, 2009

The Bus Card
Well, the first bus card (see here)(at least it was already ¾’s used up) fell and got lost within 24 hours. I think that when she went to look out the bus window she simply postponed putting the card away, and it must have fallen.
My first gut reaction to realizing that she had already lost her bus ticket was to say “OK, you are too young.” I have noticed that Ricki tends to be a bit dreamy sometimes on the bus, and doesn’t put the card away quickly. This is a potentially expensive situation.
But I gulped, and gave her the almost $15 to buy a new ticket. I insisted that she put the card away right away. She doesn’t need to be told “You’re too young.” She needs to hear that she did not act with responsibility, and that I expect better. But I am praying that she keeps hold of this piece of paper……

Thursday, January 29, 2009

The Phone Message and Mourning

I ran out to do a few errands yesterday morning, and arrived back home rather late. This was not a real problem, as Ricki’s brother was home to open the door for her.
However, as I entered the house, Ricki came to me with a concerned expression.
“Grandpa died. You have to call Evelyn.”
I gulped. My father-in-law has been in serious condition for several months. (So much so, that when my father died suddenly two months ago, and I relayed the news to my children, I had to emphasize that it was MY father who had passed on.) Now if Ricki had said just “Grandpa died.” I would have assumed that she was just rehashing the facts of my own father’s death. But the addition of the message to call Evelyn, who is my sister in law, made me realize that either what Ricki was saying was true, or maybe -maybe – his condition had turned even more critical (if that was even possible).
However, I was hesitant to tell my husband unless I was 2000% sure(rather than the 97% I was at). So I tried to reach my sister-in-law. Meanwhile I told my daughter to be prepared to pick her father up by car, so that he could be informed somewhere in private, and not on the street.
Ricki was correct. What impressed me most was not only that she had given me the message, but that she understood the importance of it. This morning she asked to see a picture of her grandfather (who she doesn’t remember, him having been here too many years ago), trying to organize the information she was receiving. She even asked me “What do you say?”, understanding that “Get well soon.” was not appropriate, but not being sure what was.

May G-d comfort my husband, his sisters, and my dear mother-in-law.

Wednesday, January 28, 2009

Yalah, B’nee! (Oh G-d, My SON!)

Now my son is not scheduled per se for a combat unit, being drafted with the “jobniks” (non-combat) section of the army. But he is a driver, and in excellent physical shape, so he may be put to “work” as the driver of a combat jeep. Even other drivers are not as safe as regular desk jobs, as my son-in-law can testify. A few years ago, as a truck driver for the army, he was lynched by a mob of Arabs, barely escaping with his life. (He had not known the way to where he was going. He asked for them to give him an accompanying soldier to direct him. Turns out that the accompanying soldier also didn’t really know the way….). These types of things give mothers, even the mothers of jobnik, a pause. But I can live with it. Even if he becomes a combat jeep driver, I will just have to learn to live with the fear. As my son pointed out, this is probably safer than his previous job as a delivery boy.
Yesterday, the day of induction, I said my good-byes at home. I felt no need to go to the pick-up point with him, and indeed, he requested that we not “bother”. He went with his married sister (married to the former almost-lynched driver), and his older brother, N.
N. reported on his return home that the inductees had all been instructed to get on a bus, had been driven about 100 yards, and then got off and went into a building to be processed. Apparently this “ride” of 100 yards is to get the soldiers free from their parents. And, reported N., that was quite necessary. He reported that one mother was screaming and crying, “Yaahla, B’NEE!!” (“Oh G-d, my son!”). “I mean”, continued N., “He’s going in as a JOBNIK, for Heaven’s sake! I pity her son….”
I suspect her son is tickled pink to go to the army.

Time to Buy Film

Yesterday Ricki had a class trip. Already two years ago I bought her a camera so she can take one on trips like all the other girls. (She came home one day and said, on Wednesday there is a trip. We have to bring drink, a sandwich, a camera….”, as if it was a requirement….. so I bought her one.)
The day before the trip I realized suddenly that if she wanted to take the camera, we would need to buy film. So I decided to send Ricki to buy the roll at a store half a block away. My husband protested vehemently, so eventually I agreed to shadow her.
I am proud to report that she purchased the roll with absolutely no problem, and did an all-around marvelous job of it. She asked the seller to put the roll in the camera, and she watched the money carefully.
On the way home, we stopped in a gift store, and we agreed to purchase her a nice purse for weekdays. She wanted to do the payment process herself, so I signaled to the store owner to purposely give her a bit less than the amount of change coming to her. She smiled in understanding. Ricki walked out of the store without asking for the remainder of the change, so I sent her back in to “complain.”
So now she has a purse. I have often let her handle her bus card, and pay her own fare, but I decided that from now on it will really be Ricki’s responsibility, including asking me for money BEFORE the old cards finishes. Obviously I will have to have a “backup” card prepared for emergencies, until she gets experience, but that is the direction we are heading.

Tuesday, January 27, 2009

The Journey from a Pacifist to the Mother of a Soldier

There is something about me that I don’t think my children know. They probably wouldn’t be surprised, but they never had reason to come across this information. The “secret”: Their Mom used to be a pacifist, holding real membership in the Israeli pacifist “Peace Now” organization. (That membership almost cost my roommate in 1974 a good job with the Israeli aircraft industry, but I assured the security check officers there that my membership had lapsed, and was not about to be renewed.)
I had spent my years of college/nursing school on a pacifist bent, reading Joan Baez tractates on pacifism, and the like. However, the Arab countries surrounding Israel convinced me, in their unprovoked attack on Israel in 1973 (Yom Kippur war) that not everyone operates on a Western mindset. The brutal murder of helpless people along the Golan heights during the first hours of the war showed me very clearly what I still feel today to be true:
(Over) Kindness to evil people is hurtful to the innocent. If you let a convicted rapist-murderer get away with his crime, you are partly at fault for what happens to his next victim(s). I suddenly realized that pacifism sounds nice on paper, but in the real world, it is simply stupidly allowing people with no sense of the holiness of human life to wreck havoc.
Still, there was enough pacifist in me to make toy guns pretty much taboo in our house. Even water pistols tended to “get lost” rather quickly, usually with a bit of “help” from Mommy. I don’t feel that war games are things that children should play. [Unlike our Arab neighbors....]

So this morning, how did I feel hugging my son good-bye as he left home to report for his draft induction into 3 years of service in the Israeli army?
I was proud of him.
If he was a Torah scholar, I would have wanted him to stay and study in the halls of learning, providing spiritual protection for his people. But since he was not worthy or inclined to that direction, I feel that he has no right to a deferment, as much as I initially feared that the army may make him even more non-religious than he is today. I am proud that he is willing to stand up to his responsibilities.
I DO have some qualms about him serving (besides a mother’s normal fears**) but these are only due to the fact that the army section he is serving in, by his own choosing, is a totally secular environment. (I am hoping that he just might end up in a group of National-religious soldiers and come out more religious than when he went in….) My submerged pacifist tendencies have no compunctions about him serving in the army. As much as the Western press loves to demean the Israeli Army, there is NO force in the world that is as concerned for civilians as this one.
I do hope that the Arabs do not force us again into a situation where my son will have to kill in order to defend himself, his country, and its citizens. But he is prepared to do so, if needed. I trust that he will be a person with the knowledge that all people are created in the image of G-d… but with the courage to act if and when action is needed.

**As I tell my Lamaze childbirth students, fearful of any complications that could arise:
“Worrying about your child is a part of being a mother. We worry about our children from conception until, G-d willing, the day that we die.”

Monday, January 26, 2009

A “Salad” Day

Yesterday was a pretty good day, with just a few moments of arguments mixed in here and there.
Ricki came home from school, and excitedly showed me a pair of “glasses” she received at school, which refracted and split light into a rainbow of colors. I was gratified that she was enthusiastic about her studies. I was less enthused over her reluctance to wear her regular eyewear….
* * * * * * *
Ricki pulled her “daily report” sheet from her school bag, and sighed with exasperation as she noticed that her aide had not had a chance to mark down her two “smileys” (smile stickers) for the last hour of classes. She quickly took a pen and marked them in. Her pencil only hovered for a fraction of a section over the point-area for wearing her hearing aid. She chose truth and made an “X”.
I was so proud of her for being honest.
* * * * * * *
We had “puppet club” in the afternoon (next-to-the-last time). Ricki was insisting on wearing a bulky sweater that I had set aside to give away, it looking too atrocious on her for use. How she noticed it high on the closet is beyond me. But notice it she did, and she was enraptured by the pink color. Any considerations to the contrary were not being considered as admissible to the “court”. And this was besides the fact that she had her heart set on wearing sandals in the cold. [Now I believe that one learns best from experience, but I was not prepared for her to loose schooling due to illness as a result of a single act of (GULP I hate to say it, but of) idiocy.] I finally told her that she could wear what she likes, but that I was not going out of the house if that was the way she was going to be dressed. I hate to strong-arm her, but sometimes I feel that I really have little choice. How I am going to teach her to choose flattering clothing (or to submit to external review) is beyond me. I am simply envisioning her traipsing around ten years from now in outfits that will be totally horrid. I didn’t think about this when deciding to keep her………
* * * * * * *
After the puppet club, where, incidentally she acted quite nicely, and for once didn’t stuff herself with snacks, we returned home to an evening of homework. I was relieved and gratified that she actually tackled the task with a satisfactory amount of effort. It was one of her better evenings, and she was able to top the homework lessons off with a session of “Freddie the Fish” on the computer.

A “salad” day.

Sunday, January 25, 2009

Minor Miracle

This morning was one of those days you always dream of: everything went right. Ricki actually got up without too much prodding, got dressed, and ate breakfast. She had me comb her hair into a pigtail, and took her medications. Not only did she leave the house in a happy, smiling mood; she was on time!
But the icing on the cake:
She was in such a good mood that she didn’t even remember to take her imaginary friends with her. Usually as she leaves, she makes a motion as if holding someone’s hand, and says something like “Come, let’s go.” Today she simply waved, said “bye”, flashed a megawatt smile, and bounded down the stairs with nary a glance behind her.

Saturday, January 24, 2009

The “Kiddush”

[Explanation: “Kiddush” is a blessing over wine made on Saturday. But here, the usage is different. Here “Kiddush” means a celebration the weekend before a wedding, which is mostly for families of the couple, but if the wedding is being held out of town (or out-of-country), the “Kiddush” becomes a chance for everyone to come and wish the couple and their parents “Mazel Tov”(congratulations).]

This Shabbas (Saturday) morning, I had a Kiddush to go to. A good friend’s son is getting married abroad, and since I really can’t afford an extra trip to the British Isles, I had to “make do” with giving her my good wishes at the Kiddush.
Now sometimes a Kiddush can be a simple affair, and sometimes rather lavish. Cakes would be in abundance; a high-class affair would have salads and foods as well.
Anyway, I had no choice but to take Ricki with me, there being no one willing to babysit her at home. (In addition, she knows some of the children in the extended family of the celebrants.) I was rather concerned, however, that she might plow into the cakes with a flourish, which would be rather embarrassing for me. When Ricki has a mind to eat, she can be voracious and really make a pest of herself. So I sat her down before going, and made her promise to eat ONE piece of cake OR baked goods, and not more.
To my great pleasure, Ricki was terrific! She showed me her plate (with one baked item, some pomegranate seeds, and a strawberry), proud that she was able to keep her side of the bargain.
But I did have one rather lame “laugh” at the end of the celebration. A young girl from the family gave Ricki a piece of wrapped chocolate. She then turned to me, and said: “Be sure to tell her to take the ‘shell’ off.” (IE., she didn’t even know the word “wrapper”.) I realized that she really thought that Ricki was helpless, and replied: “Don’t worry, she can do it quite well herself.” I wasn’t sure whether to laugh or cry; I chose to laugh. She was trying to be nice to Ricki, and that’s the main thing. (But when she brought a second piece of chocolate, I managed to get Ricki to refuse the extra calories.)

Friday, January 23, 2009

“I Have a Dream”: Parenting a Child with Down Syndrome

When watching a few clips yesterday about the inauguration, I saw, among other things, a clip from the “I have a Dream” speech of Martin L. King. It really gave me a sense of the great changes that have been wrought during the years I have resided on this planet.
But as a parent of a child with Down syndrome, I also have a dream:

I HAVE A DREAM that one day people will see my daughter, and see HER, not her diagnosis.

I have a dream that one day my daughter will be able to walk the street without being subjected to stares.

I have a dream that someday “retarded”, “imbecile”, and “moron” will be a simple description of intelligence, and not an insult.

I have a dream that the world will value people for being created in the image of G-d, and not for what they earn.

I have a dream that the government will someday have the foresight to realize that educating special needs children and adults to be independent is less costly than supporting non-independent adults, and act on that knowledge.

I have a dream that adults with Down syndrome will get a reasonable salary for the work that they do.

I have a dream that people will one day realize that my daughter is not just a burden, a “cosmic mistake”, but that she adds to the value of our lives and society.

And the only way to reach this dream is to wake up, and take a stand, as Rosa Parks did one day, and say “I am a person, oh not so different than you.”

Thursday, January 22, 2009

Easy Math or Put on Your Colored Glasses

What I am about to write about now applies to all people. Special-needs children, typical kids, and people you meet.
We have a tendency to form opinions of people very quickly. We “size up” strangers before giving them a chance, we bemoan a child’s misbehavior: “Oh, what a terror he is today!”
Once that opinion has been formed, you are likely to try to fit any new information about that person into your pre-existing mindset.
For example, lets say that there are two political candidates. You want “A”, and have decided that “B” is a no-good-doer. If the two of them do the same identical action, one which can be interpreted either positively, or negatively, you will surely say that “A” was acting with the positive motive, and “B” with the negative one.
Now let’s take this into our home. Your child, who we will call Chaim, did something that displeased you. You are beginning to suspect that he is on a bad-behavior “rampage”. If he does almost anything, you are likely to interpret it in a negative fashion. Even if he asks you if you need some help, you are likely to attribute negative underlying motives for his cooperation. (“He’s helping in order to ask me later for….”)
On the other hand, if we will decide to view Chaim with positive eyesight, even misdemeanors can be “excused”. (“So what if he knocked the vase over. He’s tired, it was surely an accident”)
So, if we can convince ourselves to make that first evaluation a pleasurable, positive one, we are likely to reap benefits three-fold:
12) We think we have a good child
2) We will get into fewer arguments
3) When the child sees that you are giving him the benefit of the doubt, he is likely to reciprocate, and actually act better.

One good thought equals three good outcomes.
Easy math…...

Wednesday, January 21, 2009

Rabbi Shimon Ben Shatach and my Daughter, the (Petty) Thief

For those unfamiliar with the story of Rabbi Shimon Ben Shetach, I quote (slightly adapted) from Wikopedia:
Rabbi Shimon's fairness toward non-Jews is illustrated by the following narrative: Rabbi Shimon lived in humble circumstances, supporting himself and his family by conducting a small business in linen goods. Once his pupils presented him with a donkey which they had purchased from an Arab. On the neck of the animal they found a costly jewel, whereupon they joyously told their master that he might now cease toiling since the proceeds from the jewel would make him wealthy. Rabbi Shimon, however, replied that the Arab had sold them the ass only, and not the jewel; and he returned the gem to the Arab, who exclaimed, "Praised be the God of Shimon ben Shetach!"
Each week I have Ricki’s aide read with her a story from our sages. This way she gains three things:
Reading practice
Familiarity with her heritage
The message of middos (character traits) contained within.
Last week, after Ricki claimed twice, falsely, that something was hers, I picked the story of Rabbi Shimon Ben Shetach for her and the aide to study. Afterwards, she had a worksheet on the story, and she talked about it with her aide. She even promised that she will no longer try and pilfer borekas (knishes) from the grocery store. (This was something she is very tempted to do, but doesn’t anymore -in general- as a result of cooperation with the store and a detailed behavior plan.)
So imagine my consternation when that very same evening she went and took three (!!!) borekas when her music teacher wanted to buy her two. (I would have tapered it down to one--they are extremely fatting--- but that's an aside....)
It should be clear without saying, that there were serious consequences (not just words). Our sages say that real knowledge comes with 101 repetitions. I hope it won’t take that many

Tuesday, January 20, 2009

Slice of Israel / Try This Tuesday

Slice of Israel -Snow
Israel is an amazing country. It is small in area, yet you can find several different types of topography and climate here. We have everything from skier’s snow on Mt. Hermon, in the winter, to hot smothery desert dust storms in the summer. (These dust storms invariably first make their appearance as everyone finishes cleaning their houses for Passover, thus covering all the immaculately scoured kitchen surfaces with a layer of dust….)
Today I want to tell you about the snow.
Years ago, when I first told my Dad that it was snowing in Jerusalem, he facetiously commented, “Oh, that must be a ‘Zionist lie’….” Snow in Jerusalem is breath-taking. Since the city is not used to snow in significant amounts, the occurrence of a snowfall brings the city to a quiet standstill. Schools close, children romp in the snow, and the only vehicles on the road are emergency services.
Once, about 5 or 6 years ago, Jerusalem had a very good snowfall. One of my sons lives near the edge of the city, so another son (unmarried at that time) “organized” a car for himself, and spent the day driving family members (and friends) up to enjoy the few centimeters-deep snow surrounding their sibling’s apartment. Ricki was fascinated to see the white fluff, something she had until then only seen in books. All my humping that snow that doesn’t reach up to your knees is hardly worth the name went unheeded.
Where I presently live, on the coast, snow is virtually unheard of. Once, about 15 years ago, I remember there was a fall of sleet, which looked very similar to snow. Children were on their way to school at the hour that this occurred, and as if they were one, the schoolchildren inverted their open umbrellas (it had been raining), in order to catch the “snow”. Since snow doesn’t appear in many parts of the country, you can have adults who have never witnessed as much as a small snow flurry. Typically, when snow is predicted, teens enjoy traveling to Jerusalem to stay with relatives or friends, in order to witness the phenomenon.

Try This Tuesday
For targeting (and practicing) impulsive do-before-you-think schoolwork, one tiny tool is “mazes”. To do a maze properly, one needs to stop and look before continuing past any divergence of paths. So repeated use of mazes can help a child learn to control that impulse to continue, even when he is not sure of the correct action.
To help Ricki learn to pause, I put in all the intersections of the maze a red pen dot to remind her to “stop”. If I am sitting with her, I will say aloud:
“Stop. Pause. Think.”

When Ricki has a reading assignment, I put a stick-it note at the top of the page. It has a picture of a palm making the “stop” symbol. There I list the things she should be watching out to find.
This idea can be adapted for younger children. Preface what you are doing with them with an explanation. You can make a "stop" sign with your palm.
“Today we are looking at plants.”
“This game has many colors.” (if you are studying colors)
“Now we are going to spread cheese on your bread.”

Red “stop dots” with pen are also good for adding to dashed-line letters and numbers when teaching writing.

Monday, January 19, 2009

Magic Marker Monday

I posted last week about our trip with Ricki's nephews to the zoo.
Now Ricki has, if nothing else, a very creative mind. When I give her pictures with the assignment to write a sentence about the photo, she comes up with the most imaginative stories. They may not always be written in perfect sentences (which is why she has this homework... but she is getting much better)... but her imagination is tremendous.
Now Ricki usually doesn't draw so much. Lately I been encouraging her to try some drawing. So after going to the zoo, she took a pen and this is what she came up with:

She told me that it was a turtle. But I am sure the fellow has a few peacock feathers as well!

Sunday, January 18, 2009

The Dress Purchase

I went with Ricki a few days ago, to buy her a new dress for Shabbas (the Sabbath). I had finally woken up to the reality that by the time I will manage to sew her winter dress (which I had intended to sew, to save money), the winter will be almost over. I decided to buy her a new dress, and save the cloth for next autumn.
Now dress shops are Ricki’s favorite place to act childishly, to try and put on pretty dresses about ten sizes too small, and otherwise play the “let’s see how long it takes before Mom gets hauled away to the loony bin” game.
A while she was far from perfect, she was much better than normal. I just wish I knew why she seems to think that dress stores are a venue for torturing Mommies. I suspect that she realizes that I will put up with a lot, since I want to finish the purchases. I think that next time I get her any clothing, I will purposely schedule for myself two excursions, so I can easily make a point of leaving the stores if she starts acting out. And then I will have to pray that one botched excursion will be enough for the lesson to sink in.

Friday, January 16, 2009

Down Syndrome, Children: Not Letting Them “Get Away With Murder”

(PS. A lot of this applies to “normal” children as well…)
The lovely young lady who Ricki “studies music” with stood at the door looking pale and ill. She had just returned with Ricki, rather late, so I asked “what was up”.
-“Don’t tell Ricki that I told you. She was scared that I would, so she ‘made up with me’ downstairs.”
It turns out that Ricki carelessly, and apparently not entirely unintentionally, had “stabbed” her in the stomach with her umbrella. To say that I was floored is putting it mildly. I was seriously upset at Ricki’s behavior. And concerned about the way the young woman had, effectively, let Ricki get by with less than a “slap on the wrist”.
Yesterday, Terri at Barriers, Bridges, and Books
mentions the way society isolates those with behavior problems. I have often commented… ( see here my post from June 11th) (If you haven’t been here that long, go read it. I think it is worth the pause in your visit here.) I have often commented how Ricki’s most disabling feature is her behavior. And, unfortunately, through the years, I have often felt very much at odds with staff and therapists who have condoned bad behavior, or basically given such mild reactions that Ricki realized that she can get away with it.
I confess that I myself have often unwittingly condoned misbehavior by simply saying that I am upset, telling her I expect better. For Ricki, perhaps due to her ADHD, but I suspect that this goes for many many children – a verbal reprimand is not enough. When her quest to be independent is combined with her desire for whatever she is doing at the moment, it is simply more important than a “tisc-tisc” from me. This is especially true since she is confident that we will “make up” soon enough. For children like Ricki, some type of consequence is imperative, or the behavior will continue “ad infinitum”, and often escalates as well. This consequence can even be the losing of a promised prize for good behavior, as long as the prize is truly desired. [After all, the best behavior modification programs usually center on rewarding good behavior rather than punishing bad.]
As Terri notes in her post, people tend to exclude those with behavior problems, instead of working to fix the behavior. Often parents, often staff, and probably usually both, are at fault. If there are behavior problems, a serious program to eliminate the behavior has to be set up and worked on. Because it just won’t disappear on its own.
And a final note. Parents of younger children, already loaded down with all sorts of learning goals and therapies, may allocate scant time and energy to behavior problems. There are two very big reasons to reconsider the emphasis:
First, a child who misbehaves is very hard to teach.
Secondly, when your child is young and misbehaves, you can drag him out, screaming, if needed. When the child grows up, they may well be heavier than you. You simply can’t force compliance any more. When that happens, the “monster” behavior our laziness has created is a horrible thing. It is the most isolating, confining thing around.

PS. The incident with the music teacher happened 2 weeks ago. This week Ricki went to the store with her and acted atrociously. (She grabbed more of a baked good than agreed on beforehand.) The young lady was firm and consistent, and definitely planned consequences. Good!

Thursday, January 15, 2009

A Three-Post Day: Perceptions

Some days I sit down at the computer, and ask myself: Do I have anything worthwhile to write about?
And then there are those days- they can be “good” or “bad”, but either way are a high-yield “3 post day”. Yesterday was one of those. I will give you one story and save the rest for a hum-drum day.

Ricki’s aid called in sick yesterday, so Ricki stayed home. In the late morning I went to run a few errands, so of course Ricki accompanied me. One of the things I had to do was pick up her Concerta medication at the pharmacy, and while there, weigh myself, and since she was with me, Ricki as well. As we were getting the medicine, Ricki suddenly started reading the signs in the pharmacy. I saw a fleeting pause of surprise on the pharmacist’s face as he realized the level of Rick’s reading ability. He smiled in pleasure and I silently reaped naches.
A few moments later, just as we approached the scales, a bunch of high school girls entered, also planning to use the balance. So we weighed ourselves quickly (I lost only a bit- the wages of sin), and tried to exit.
Leaving the store was hard, the narrow space by the scales being filled by five smiling teens. So Ricki slightly pushed one girl in her attempt to get by. The young lady reacted to my telling Ricki “Take it easy, don’t push.” by stroking her face and saying, “Oh, but she’s such a sweetie”.
Me: “Without the ‘sweetie’, If you don’t mind…”
Her: (flustered a bit): “No, I love these kids. I am studying special ed.”
Me : “These kids need…..”
Her: “Love and ….”
Me: “They need rights and respect. Did it never cross your mind that if you, a stranger, can stroke her face, so than a man could too?”
She looked at me in shock. Total eye-opening shock.
Me: “Think about that again. If she is stroked by strangers, than a man could also do that. Think about it.”
I smiled, and she smiled back. But I could see in her eyes that she had heard.

Wednesday, January 14, 2009

The Zoo Trip

The other day my oldest son, his wife, and two of his kids had occasion to be at our house on a regular weekday. This is a rare occuancce, they usually arrive for visits shortly before the Sabbath, when it is too late to go anywhere. So we took them to the zoo, and Ricki went along as well.
The kids enjoyed the animals, and the adults loved watching the kids.

Kids have energy.
Kids have enthusiasm.
Kids love seeing and observing new things.

Don’t you think that we should all aim for a bit of that?

I Confess

My son went back to school the other day (out-of –town) and left his bag a “goodies” on my bed. It had milk chocolate. I was tired from staying up writing and such. I didn’t stand a chance. At least I stretched it over two days. (Once I would have finished it in five minutes….)
But I am not giving up.

Tuesday, January 13, 2009

Down syndrome: The mark of Cain

OK, my terminology is a bit strong. But I could sense Ricki’s exasperation yesterday evening as someone just categorically boxed and labeled her.
We were at a bus stop, coming home after Ricki’s regular Monday exercise class. As we were sitting, Ricki suddenly decided to pour herself a drink from a bottle she had packed and brought along with her. I warned her that the bus could come any minute, and that she would not be able to get on the bus with a full glass (paper) of drink. The motion of the bus would automatically cause spills. Well, she insisted that she was thirsty, and was gosh-o-golly going to have a drink. At that point a woman came over and tried to pour the drink for her. Ricky was rather shocked. I shook my head, commenting “She can manage OK, don’t worry. “ A moment later she tried again, and again I had to say that Ricki didn’t need her help, she could manage on her own.
It just happens that Ricki has been pouring drinks spill-free for years. As a toddler, one month I let her pour and pour to her heart’s content. My husband suggested buying stocks in the dairy company, as we were buying bagfuls of milk. (Milk comes in bags in Israel.) But by months end she was a spill-free pourer.
Would you like to know what really made my evening?
Ricki didn’t make a face at her. She didn’t stick her tongue out. My G-d…. I think she’s maturing. She dealt with the unwanted intervention like a dog coming out of the water: shook it off, and kept on her way. (And, luckily, she finished her drink before the bus came. If she hadn’t, and we had missed the once-every-half-hour-bus, I am not sure I would have been too mature…..)

Monday, January 12, 2009

Reading and Who Likes Homework?

Ricki, for reasons that are surely a product of my own deficiencies, is allergic to homework. Now I realize that most teens would rather have fun than “hit the books”, and in that Ricki is no exception. However, it is worse than that. When working she tends to turn her back, speak low, or say “I dunno”. All three are efforts to avoid possibly giving the wrong answer.
Now the wonderful teacher she had when she was one year out of school had taught her that it is OK to make mistakes, they happen and are not a crime. But somewhere along the line, she received from someone a different message, and Ricki has become very defensive.
So one of my big goals for this school year is to return to Ricki a love of learning. First, I try to set her up for success, by warning her before reading some text, what the questions are going to be. This has proven to be a very good technique. In addition, the mottos “try, try, and in the end you will succeed” and “”It’s permitted to make mistakes” have returned to frequent usage in our house. I also point out when I myself make a mistake, give a laugh, and say I will try again. And like a big heap of snow on a roof (in Colorado, not here!) on a sunny winter’s day, I see a bit of thawing. That’s how I view Ricki’s reawakening to the fun of learning.
Sometimes she comes up with the most interesting and amazing questions about things around her. I always praise her for asking any questions, it is a sign of interest in the world, and a willingness to admit that she doesn’t know something yet.
However, despite all this, Ricki has a tendency to be bashful about reading. She tends to read very quickly when it is for me, leading to missed words. And the fast pace doesn’t let her think about WHAT she is reading. But the other day I got a very good view of exactly how well she CAN read. I overheard her reading a story to her imaginary friends. Listening from behind a corner, I heard not only clear words, at a normal pace…. But I could discern from her intonation that she understood exactly what she was reading. It was a real “naches” moment for me.
(“Naches” is a Yiddish word, not very translatable, but its how you feel when your kid gets straight A’s, hits a home run, etc.)

Sunday, January 11, 2009

New Look / What Ricki is Studying

I hope you like my new "look". I had thought several times of changing, but was loathe to change my picture of Colorado's water cascades for some lousy banner. Suddenly I realized that I could change my look and keep the picture. Walla! I just hope that the light green background does not make it harder to read.
Usually I try to post after Shabbas, on Saturday night, as compensation for no post in the morning, but I was too bust doing homework with Ricki…She is studying all sorts of interesting things in school lately. In science, she has been learning about mirrors (I taught her the meanings of “concave” and “convex”), and she enjoyed seeing how you can write in secret code (backwards) and correct it in the mirror. Next she will be studying about the way light “breaks” as it goes through different clear mediums. Here I don’t expect her to really study more than the objective fact that such an optical illusion exists, and perhaps the word “mirage”.
Geography has been the most exciting class lately, studying about hurricanes and tornados, and the Mississippi river. Into her workbook I pasted a copy of this picture of her at the continental divide in Colorado.I explained how water from just east of this sign went all the way to the Mississippi! (PS. The lady in the picture is Ricki's Grandmother, who is really grand! She specifically went out of her way to take us to the continental divide, which is on the "other side" of the Rocky Mountain Park, at my request.) And next they are going to learn about Niagara Falls and the great lakes.
In connection to her Torah (Bible) class, where they are studying the hardest volume of the Pentateuch, Leviticus, I have to do a lot of adapting. Most of Ricki’s work is learning new words, looking them up in the dictionary, and writing sentences. Last night I had her looking up information connected to today’s topic in the telephone book’s yellow pages. Yes, I am teaching her how to use a dictionary, phone book, etc.
Last night I did a thorough check-up of where Ricki is “holding” in math.
[In general she is way behind in math, both because of the difficulty in general for children with Down syndrome to learn math, and due to a lack of emphasis in this direction over the years. ( Not to mention the aide who didn’t work with her properly on math the entire year, which I only discovered at year’s end when her “math box” came back in pristine state.)]
Ricki is studying math using the Numicon materials, which are very good. They use colorful plastic shapes, which are fun to work with, and can be joined to give a very vivid visual image of math facts. Eventually these images become mental images, and the learner can do the sums in the head.
This year Ricki is beginning to spurt forward in math. She knows addition and subtraction up to ten, most of it perfectly. She is still a bit weak in subtraction from 10, 9,8,and 7. But she is almost there as well. She knows and understands numbers to one hundred, understands place value (10’s), and some addition/subtraction to 20. She is improving in her ability to court forwards and back in two’s (to twenty), tens, and fives. I am hoping that by the year’s end she will recognize and name numbers in the hundreds, have finished addition/subtraction to one hundred, and hopefully a bit of multiplication as well. She also needs to work more on reading time, but I am waiting for her to know more clearly the times-fives.
About her reading I will post tomorrow, hopefully. (As well as her attitude towards studies.)

Friday, January 9, 2009

Gee, Even at 18 and 20?

Yesterday my 18 and 20 year old sons had a friendly “fight”. The 20 year old (“N”) wanted to get “D” into a pyramid scheme. D, understanding the math better than his older brother, knew it was a waste of time. But N was very insistent, blocking the door, and being an all-around pest. D was getting fed up with it, and finally laughingly pushed N a few times. (In the end, D was really clever. He promised he would sign up if N did the dishes for a week. He knew that the chances of THAT happening are less than the odds of winning in the pyramid system….)
Gee, D is going into the army in a few weeks, and N has a job. I was under the impression that they were grown up, but they were baiting each other just like they did five years ago.
Do men ever grow up?????

Thursday, January 8, 2009

A Reminder

As the fighting in Gaza continues, and the world says "overkill", this video is a reminder that we wanted Peace. We kicked our settlers out of Gaza.
And believe me, if we back down now, the Hamas will have had their victory and NO ONE will stop them.

I Ran Away

This morning things seemed under control, although time-wise Ricki and I were running a few minutes late. I continuously kept glancing at the clock, worrying that her ride would arrive before she went downstairs to wait for it. The situation was not helped by the fact that my two front-of-the-house timepieces give the hour with a difference of five minutes between them. [Every morning I make a mental note to adjust them, but later in the day I forget.]
Anyway, just as Ricki was ready to exit, I heard the honking of the cab.
“Ricki, there’s your ride! Go fast!”
She balked, and requested a (diet) candy.
“Ricki there’s no time! GO!”
So she dug in her heels, determined to get her way.
So I ran downstairs myself to the waiting car. Ricki had no one to argue with; it was evident that I was not giving in. But the whole way down she was hollering that this was not standard procedure, she is the one who has to leave, not me.

Moral of the story: One of the best ways to win an argument with your child is to run away from the dispute. And its better on the nerves; better on the eardrums.
I have written previously a similar, even better version of the “running away tactic” here.

Wednesday, January 7, 2009

One Word

There has been a lot of posting about making a “new year’s resolution” of one word to aim at. Well, I had a lot of trouble with that. First, to me January the 1st is not the “new Year”, but rather the Jewish New Year. However, self-improvement is good ANYTIME. But I had a bigger problem thinking of a word that I felt really fitted with where I want to go right now.
Then, suddenly I had an idea that really “rang” with me:

I need to nurture Ricki… help her grow while providing love
I need to nurture and find more time for other family members
I need to nurture myself as well.
I need to nurture my relationship with G-d

NURTURE is good word, because it implies loving, and giving… but also growth. (And in actuality they are interrelated. That best growth comes only through love.)

Tuesday, January 6, 2009

Longing for a House that is a Home

I think that modern society has lost out by not adopting the old type of building: those with courtyards. It wasn’t for nothing that ancient cultures often used buildings with central patios. The patio would be an ideal place to schmooze with your neighbors, share gadgets and appliances, and watch out for one another. Of course, you would need to share basic core values with the others. I could imagine a family with several married siblings living in such a place. Sisters in-law could take turns watching the toddlers in the afternoon, giving the other women a break. Grandma could easily keep up with her grandkids; she could be more involved. This would give her greater self esteem. And if an elderly parent was needing help, it would be easier to all to pitch in.
The only drawback I see is the need to avoid lashon hara (evil talk, gossip) and fights. But we need to do that in families, anyway.
But instead we all live in flung out places, and need to travel just to visit our families. And this leads to families being deprived of the most natural support group around. We live in homes carefully separated from neighbors. Even apartment dwellers often don’t know their neighbors in some societies. (In Israel, they generally do….) It seems to me a very lonely way to live.

Monday, January 5, 2009

“I used to have Down Syndrome”

Last year I posted about a yearly speech I give at a local institution. Well, this week I WAS invited back. The content of my talk was the same, but I had a few rough moments. You see, there was a young lady with Down syndrome in the class.
This young woman is quite accomplished, and is sitting in on the classes of teacher education. So during those few tines that I was quoting certain studies, and needed to mention the amount of “retardation”, I felt rather bad. (I apologized for using the term, and said that I was using it purely in a clinical way.) I certainly didn’t want to hurt her feelings.
She surprised me by approaching me after the class (even though she had slept through part of it). Then she appraised me that “I used to have Down syndrome.”, explaining to me when she had been cured.
This gave me real pause. I refused to say “How nice”, not wanting to be a party to the lie, but felt that it was certainly not my job to set her straight.

-What parent lets their child think that they have been “cured”? Why do they feel the need to do this?
-Doesn’t this actually show an unwillingness to identify with the reality of who you are?

This lady volunteered to come spend some time teaching Ricki, and I accepted. I know that she has had experience teaching teens with Down syndrome. But I think I am going to ask her not to mention to Ricki that she was “cured”. I don’t want Ricki to pick up this attitude. And I hope to unobtrusively keep an eye on what goes on. I warned her that Ricki might not be so nice to her at first. But by all counts, I am looking forward to seeing more of this young woman. This should be very interesting. And I am pleased that Ricki will gain exposure to someone with Down syndrome who, for once, is smarter than she is.

Sunday, January 4, 2009

Siblings and Disability

Over at Barriers, Bridges, and Books, Terri has raised the subject of Siblings. (She linked to a short but good article on it as well.) So I want to add in my 2 cents or esser agorot (equivalent Israeli currency).Siblings can be a tough issue. There is a woman in our community known for giving advice in child rearing, and she is really very good.
But as good as she is, her luster was broken for me one evening. A friend and I (she has a child with learning disabilities) went to her this lady speak. During the speech, she mentioned an enquiry from a woman who was worried about giving enough attention to the sibling of a special needs child. Women in the crowd LAUGHED. The speaker said nothing about how insensitive this was. Afterwards, my friend and I agreed that we felt like Martians. Worrying about siblings was not a joke to us, but a real life issue.
I think all parents of special-needs-children worry about siblings. If they don't, they should. I once saw some research (sorry, can’t remember where) that basically indicated that families usually do OK with a special –needs child, the exceptions being:
-parents who have personality-emotional problems of their own
-parents stuck at home and in isolation
-where the special-needs child was abusive or had problem behavior (ie., severe physical needs was not the problem, rather, behavior.)
-extreme poverty

So, if you have none of the above qualifications, why should you be worried about the siblings? Won’t they grow up, as the study says, viewing life with more maturity, feeling that they gained from the situation. Yes, hopefully they will. But children are not adults. They see things differently.
[An aside to prove this point: Look at an old photo album with your kids. They will remember different things than you do of the same event (More on this, hopefully, in a further post.)]
I remember about six or seven years ago, one of my older sons (who complained about being a “sibling” more than the rest) asserting that I was not being pro-active enough in helping him find a match. [We do “old-fashioned” match-making here, and it works pretty well. Parents check out prospective matches, but the couple meets several times before making the final decision themselves.] I paused and considered his complaint. And for once, he was right, and I attempted to do more efforts in that direction. [P.S. He is happily married several years now.]
So here are my suggestions:
1. Be open about the existence of the disability. Don’t make it into a tragedy, but definitely don’t hide it or pretend that it doesn’t exist. Kids are aware of their parents moods, and besides, wouldn’t you like to have them hear about the disability from you (with your upbeat attitude), and not from the neighbors?
2. Allow the sibling (at any age) to:
-be upset with the diagnosis
-complain about you being busy
-complain about their sibling’s bad behavior
3. Try and find time to do stuff together, fun things- both with and without the special-needs child
4 .Remember that you are the caregiver. You chose to have or keep this child. Siblings can help, as they need to help in any household, but they are not our slaves, nor are they the main caregiver. They have their own lives. And if they don’t want to do a certain activity with their sibling (like take them to the park) because of embarrassment, drop it. Have them help with regular household things. I have had kids who wanted/ didn’t want to take Ricki along with them to various places, and I respected their feelings. I believe that the NON FORCING was the best way for them to come and accept their obligations and opportunities (to help their sibling) with love.
5. If you buy lots of stuff (needed stuff, even) for the sibling, occasionally buy for the sibling something for HIM. I think I wrote about the following incident once, but I can’t find the previous post (and Ricki’s sibling is breathing down my neck, wants the computer already….). So I will, it seems to be needed, repeat: Once Ricki’s brother that is only two years older than her (and has borne probably the most flack from her diagnosis), came to me and said: “You know, I saw the most stupendous toy that you should buy for Ricki. It is really very educational.” Thank- G-d I saw what he really wanted, and said, “No, I don’t think it is good for Ricki. But I think that I want to buy it for YOU.” His big grin showed me that I had been right on target.

Other previous post on siblings:
1. Thursday December 25 (scroll down a bit)

Saturday, January 3, 2009

Postscript to Yesterday’s Post

When Ricki came back from school on Friday, she threw her school bag on the floor, and shot out the door. After a few moments she reentered the house. “Where is the hearing aid? Did you find it?” she queried in a concerned tone. Well, at LEAST she was worried! And she had been a good girl in school. She nevertheless got a lecture from me, and a small punishment. It was made very clear that throwing away $2000 hearing aids is NOT acceptable! And in the meantime she had misplaced her glasses again. This is getting to be too often for my liking. I am going to have to institute some program to encourage her to look after her eyeglasses better.

Friday, January 2, 2009

The “Dybbuk”or Blogging the Truth and Down Syndrome

In writing this blog I have committed myself to “tell it like it is”. No Pollyanna whitewash, but a true view of life with a teen with Down syndrome, both the good and the not-so-good. This morning was one of the later. I only ask that if you are new to this blog, that you read some of my old posts, to gain the perspective that this morning’s behavior was not typical at all for Ricki.
It is 8:26 am and I feel like I need some R&R. This morning’s “getting Ricki off to school” was wrought with arguments, disappearances, and the throwing away of her $2000+ hearing aid. (Don’t worry, I found it) And the only possible explanation is that Ricki got less sleep than usual. (Although in general this week, she got more than normal, as I have tried to make getting her into bed on time a priority.)
The morning actually started pretty well. She woke up a bit early (and went last night to sleep a bit late after cleaning behind her bed, see below…..). She promptly went to shower, and got dressed. I gave her medications to her, and she had breakfast. She was fine until that point, but then it was as if a dybbuk had flown into her.
She had dressed with flashy, non-standard boots, a pair way too small, that are “leftovers” from three years ago. I told her that these boots are not appropriate for today; it is not raining, and please go put your regular shoes on. She grumped a bit, but went to change them. Then, since she had several minutes left before her ride to school was due to arrive, she started collecting trinkets to take to school. First was her bracelet. I explained that the school does not allow bracelets, please take it off. After a bit of arguing back and forth, I warned her of a “consequence” should she continue, so she reluctantly gave in. Then a few minutes before she was due to go down for her ride, she started stuffing all sorts of junk into her school-bag. Two pieces of junk I allowed, the rest not, and I finally, with a lot of commotion, finally got her out of the door. She went downstairs, and as she exited the building, I waved to her from the window and wished her a good day. It had been a bit grueling to get her off, but I wanted her to go with a smile and a wave.
The next thing I know, the driver is honking and honking. I call him on his cell-phone and Ricki, it seems, is no where in sight. I explain to the driver that she IS downstairs, and is probably on the corner. A minute later her aide shows up (she takes the same ride), and she goes searching for the wayward child. She finds her taking a stroll just around the corner. I thanked the driver for having the patience to wait. But by now, having been frantic that Ricki would miss her ride (and where is she?), I felt like an old rag doll.
Ten minutes later the aide phones from the school. Luckily this aide is “on the ball”, and when she noted that Ricki was without her hearing aid, asked her about it. Ricki confessed to having taken it off in the stairwell, and throwing it down. The aide of course suggested that I go looking for it, which I did. I found it, but now am aware that Ricki is willing to throw away recklessly, this $2000+ apparatus. GREAT…. Now I have to dream up of a good, enforceable punishment for this behavior, to be handed down on her return from school.
I just hope that the dybbuk finished, and that she will be OK in school today. And I wish I had time for a nap. I feel drained, and the day is just beginning.


Ricki has a bad habit of throwing things (books, discs, food) into dark corners:
-in back of the computer
-behind her bed
-behind the stove

I have been working very hard to erase this behavior. Today , however, I had to spend about three hours just cleaning discs of, matching them to their boxes, and putting them away. When Ricki was away at music, I pulled her bed away from the fall. It was atrocious in back. I just left it, and on Rickis return, set her to work. Well, she really cleaned it up VERY WELL! She put the books away, swept up the trash, and gave me to discs to clean.
So what do I see when I come in to tuck her into bed? Four booklets on the floor, on the non-hidden side. I told her to pick them up. She did, but put them not into their place. After two minutes I finally got her to put them IN PLACE. I’m hoping that she will learn her lesson speedily.

PS. Ricki found her eyeglasses in her school bag yesterday. Where next time?

Thursday, January 1, 2009

Within Missle Range, Possibly??

The radio reported that Hamas filed a missle with a 60 kilometer range.
We are now in the range of missles, and so is one of my married sons and my married daughter.
I really hope they don't start throwing missles here. I have better things to do than spend my time in a bomb shelter......

Added later:
This was only said on the two oclock news, and wasn't repeated, so I am hoping it was false. Buty our shelter is ready, just in case.....


Imagine sitting in the playground with your kids. One is on a toy a minute's walk away. A siren sounds. You have 15 seconds to reach cover. 15 seconds! Try taking a shower. The siren sounds. You have 15 seconds to take cover. 15 seconds! You are driving to work. You pass an empty lot, and the siren sounds. There is NO WAY you can reach shelter in 15 seconds. Would YOU agree to live like this?

Five Kilos

Question: What’s five kilograms?
Answer: The difference between an anorexic diet and a regular one.
Over the last two weeks, I have lost two kilos (not bad, especially with Chanukah in the equation). I was moderately hungry, here and there, but not too bad.
My (near-adult) son, over the same two weeks (which started with his fasting pre surgery and his anorexic diet following the gastric bypass) lost seven kilos.
Frankly, he may have lost more, but I had more fun. A kilo a week is fine for me.

And an extra “fallout” of our diets is that another sibling is also committing to try to loose weight. And even Ricki, who is still in “indulgence mode” has been easier to keep within realistic boundaries of food consumption this week. (Unchecked, she can eat horrendous amounts….) [Whenever I refrain from overeating I have made it a habit to comment out loud that I am refraining. I am hoping that this will influence her.]

When I quizzed my husband, “What’s the difference between a regular diet and a gastric bypass?” and told him the answer, he commented:
“There’s another difference. He will continue losing.” (Implying that I wouldn’t.)

I understand his lack of confidence in my diet. I mean, why should this time be any different?
That is a question I will need to deal with day-by-day.
So I didn’t answer my husband’s jibe.
So here’s a cyber (calorie-free) toast to surprises!!!!!!