Monday, June 30, 2008

A Bit of Silence

One of my favorite pastimes is a rarely-indulged-in one:
I enjoy sitting in an armchair, next to the living room window. The best time to do this is in the early morning, when the summer blast of heat is a bit less. But one ingredient to this scenario is irreplaceable: quiet.
A bit of silence was all I wanted this morning, before starting what promised to be a hectic day. I wanted a brief pause, a moment to reflect. Unfortunately it was not to be, as someone in the family was determined to talk to me. After five minutes of hearing them out, and with only 5 minutes left until I would have to wake Ricki up, I requested a bit of silence. Unfortunately, it was not to be. OK, I survived the day in tact anyway. But I missed those quiet minutes. In today’s busy, ear-drum rattling world, a bit of silence is a gift to treasure and savor.

Sunday, June 29, 2008

The Bird Feeder

The other day Ricki came to me with a request: she wanted to take water downstairs in a container for the poor hot birds. (It was a very warm day.) So I gave her a disposable bowl with water, and let her go downstairs. She placed it in the yard, and promptly returned with a big grin on her face.
Initially, I was thrilled by this request, as it showed both concern for others as well as imaginative thinking. Later I heard that Ricki had seen her father putting out water for the birds earlier that day, so, in essence, she was only copying others. My pleasure at her “brightness” diminished a bit.
But then I got to thinking. How often does she have a chance to do chesed (good deeds) for others? When she tries to help people, she is probably usually not accepted as a helper, but shoved over to the “receiver” line. Just because it wasn’t an original idea does not decrease the worth of the activity for HER. For the ability to give is something we all need.

Friday, June 27, 2008

The Photo Album

One of my sons was busy today arranging his photo album. Since he is the child right above Ricki, there were a lot of pictures of the two of them together. So she sat down to watch him organize his pictures and assemble them into his album. Then she suddenly started asking questions: Who is this? What? Where? And she commented as well: Look, He is so cute; Look at Mommy; etc.
If I ever become a speech therapist (or next time I want to get some sentences out of Ricki), I’ll just sit down with a photo album!

Thursday, June 26, 2008

The Bilingual Country

Israel is a language student’s delight: large segments of the population speak two (or more) languages, and there is a large variety of languages spoken in the country. Almost all elderly people in Israel speak two languages: that of their country of origin, and Hebrew. Common second languages are English, Russian, Yiddish, French, Spanish, and Arabic. Other some-times heard languages include Portuguese, eastern European languages, and German. Even native-born elderly persons are likely to know English, from the time of the British mandate. And the constant influx of new immigrants, coupled with tourists, make it extremely common to hear “foreign” languages on the bus, in stores, and everywhere in between. Museum displays are always written with English in addition to Hebrew, and taped presentations in a variety of languages is common.. Add to this the fact that many products, DVD’s, etc, are produced and imported from Europe, fully labeled (and DVD’s labeled or spoken) in an assorted medley of languages. (Sometimes my kids turn their favorite DVD to a different language, just to hear what “Toy Story” sounds like in Italian or Japenese.) Another large segment of non-Hebrew speakers are the Chasidic Orthodox population, who often speak Yiddish. However, despite their preference for Yiddish, they will generally know Hebrew quite well

So this morning, as I waited for a bus, a young chasidic boy (about 6 years old) at the bus stop asked me in Hebrew: “What time is it?”
-“Eight twenty two.”
This child was impeccably dressed, two long earlocks framing his face, and reminded me of my oldest grandson. His forehead creased slightly. “Can you tell me in Yiddish?”
This was a bit of a problem for me. I know only the briefest smattering of Yiddish, including numbers up to ten. Twenty two is not included in MY Yiddish lexicon. So I said “ten and ten plus two… almost half-past eight.”
He asked me in Hebrew which numbers of buses had gone by, and which not. Five minutes later he asked if it was already eight thirty. I asked if his school started at eight thirty, and he nodded yes. I felt sorry for him because he was going to be late, due to a lapse in bus service. (Several minutes had passed with no buses going by, much longer than expected.) Later he boarded the bus with me, and as he got off the stop before mine, I thought to myself: I hope his teacher isn’t angry, and believes him when he says the bus was late. He looked like a really sweet child, and I wanted him to have a nice start to his day.

Wednesday, June 25, 2008

An Optimistic Attempt Validated

Let me preface this with a few facts so you can make sense of it.
1. Ricki finishes seventh grade in a week.
2. After the regular school year there is an added two-week day camp for a nominal fee.
3. Ricki can only attend the camp with an aide.
4. I want the city to pay for the aide, since the government gives them 11, not 10 months of “aide” fund.

My efforts to get Ricki to day camp were a bit harried. First, I had to get the aide to agree to continue another two weeks. Simultaneously, I had to get an explicit OK from city hall that they would pay the aide. They are VERY hard to reach by phone, and they kept saying “We will check and call you tomorrow. They didn’t, and I called every two days for a week. Finally yesterday they agreed. And the aide agreed as well. (She also asked me to let her “think about it and let you know tonight or tomorrow” ---for about a week…. ). So I immediately called the school to register her, and they said, “No, the registration is finished.” “Try in city hall.”
Immediately the pessimistic side of me (the side that went through two court cases for Ricki’s right to an inclusive education) kicked in:
“They delayed in city hall on purpose, to make it past the deadline for registration, so the city can pocket the money.”
Then my good inclination piped up:
“Who says? Check it out? Give the benefit of the doubt.” So I did. Today I traveled over to city hall, explained things, and had Ricki registered for day camp within five minutes. No fuss, no arguments, no problem. Gee, its NICE when people are accommodating!

Tuesday, June 24, 2008

The Taxi ride.

On Sunday afternoon, Ricki and I were in a taxi, on the way to her piano recital. Maybe she was tense, I don’t know, but the fact was that she kept punching me in the arm. I asked her nicely, twice to stop. She didn’t. Going home (consequence #1) was not an option. So I simply told the driver to stop the cab, and switched to the front seat. (Cabs here are not divided front/back like in some big cities.) No yelling, no negative attention, just a clear statement of action: I will not let you punch me. She was great for the rest of the day.

The Puzzle

Ricki does not enjoy seeing people who are mentally ill. The other day she saw someone she knows who is currently not 100%. They said something that didn’t make sense, and I was pleased that she caught it as not being true, and reacted in a non-believing way. But she was definitely puzzled as to why this person was acting this way. The downside to all of this was that she became very upset, and the rest of our walk to school was flavored by her agitation.

Sunday, June 22, 2008

This is What Brought me to Belief in G-d

(But even if you're an agniostic, don't pass this up!)
Today instead of a blog, I am adding a slide show to show you an itzi bitzi bit why I love the Rocky Mountains:

Friday, June 20, 2008

“I Want to Ride Alone”

The other day Ricki announced to me as we were waiting for the bus, “(Give me the) Bus ticket, I want to go by myself.”

It just so happens that I often let her give her fare to the driver, and to sit by herself. But this time she was saying the sentence with a different intonation. She wanted complete independence.
“But Ricki, I also have to get home, I also need to ride the bus!”
So, reluctantly, she acquiesced to my use of public transportation. But I not only allowed her to pay, and sit alone. I purposely did not look in her direction. I did not indicate where to get off. She managed fine, as I had expected.
The following day she was again begging me to get on the bus entirely by herself, and I found myself again explaining that I also needed to get to the place we were traveling to. But I was puzzled at her insistence, her tone of demand.
I mentioned this to one of her brothers, and it seems that a family member had once or twice let her ride the bus alone. Entirely alone. I was absolutely “floored”. It is true that she knows were to get off, and acts nicely on the bus. HOWEVER, if someone would start up with her, if the bus would suddenly change its route, or if she would miss her stop, she would not be ready to handle such a situation. I DO NOT intend for Ricki to have escorts on the bus all of her life. Why do I usually let her pay and sit by herself? In fact, I have been pondering lately how I can teach her to handle the situation of a missed bus stop. (Any ideas are welcome…) But we are still not to the point that Ricki can go on the bus completely independently…
But I’m not worried. Ricki will see to it that we get there. She not only wants independence, she demands it. She just needs to know that independence comes coupled with responsibilities.

Thursday, June 19, 2008

The Woman Who Kicked- Opportunity Lost

Today on the bus I saw a young woman with some type of intellectual disability on the bus. She was traveling with a middle-aged woman, who was sitting across from her. I do not know if this woman was a staff member of some institution, or family. And there were two things that concerned me.
First, the woman with the disability was kicking a boy in the aisle, and when he moved away, she started kicking her escort. It is the type of behavior I might expect from Ricki if she had not had her Concerta dose in the morning, and if no limits were placed on her. The escort said to her “stop it” one or twice, and then started kicking back as the kicking continued. It seemed to me that this behavior was not a new one (there was no concern or surprise on the escort’s face). Thus several questions arose: Could this lady have ADHD and need medication? Had it been checked out? Was the parent/staff aware that there are better ways to alter behavior than kicking back? I wanted to suggest to the middle-aged woman that she call me (I would not discuss the young woman in front of her), but I had no pen to write her a note. I usually carry a pen, but hadn’t today. It was an opportunity lost.
The second thing that upset me was that this young petite woman was wearing a colorful flowered skirt and pink sandals…. the type of clothes one would expect on a fourth grader, and not on a thirty year old. Why? Was this the choice of the woman herself, or her parents? And if it was her choice, was her family encouraging it?
Ricki also has a dress that is SLIGHTLY beneath her age, but it is still “OK”. (Although her brothers say it is not “OK”.) Whenever she wears it, I cringe. If I would let her, she would wear it every single day. So I let her wear it occasionally at home. And rarely outside. (When I don’t want her to wear it, I hide it, so that I will not be forbidding her choice, but only circumventing it.) But in general, I encourage her to dress as her friends do. I tell her “This is mature” about things I want to encourage.

The question I have is, how do we gauge the correct balance between giving a teen or adult with intellectual disabilities the right to choose their own clothing and hairstyles, and when do we step in (or not step in) and say, “No, that is not fitting for you” when explanations and teaching appropriate behavior are not (yet?) working?

When Someone You Love Makes a Stupid Mistake

You know, we all make mistakes. Maybe we react too quickly to something said, buy something they really could have done without, or perhaps judge someone too negatively. So, what can you do when someone paints themselves into a corner?
First, as they slide into the mistake, and you see it about to happen, you can encourage them to take their time. You can mention things they might want to consider, while letting them make their decision. It IS their decision.
Then, when they discover the truth, and they have to look in the mirror and say “Hey, that was a mistake”. That is bad enough. Don’t make it harder by being the one to say “I told you so”. Let them save face; it will then be easier for them to choose to correct the problem.

Wednesday, June 18, 2008

The Raw Deal

I think, eventually in life, we all get plastered with something we feel is a “raw deal”.

Some feel this way when they have a special needs child. When I gave birth to Ricky, I did feel shock, and questioned how I would deal with it, but didn’t feel it a “raw” deal, just an unexpected one. After all, I hadn’t done anything to “protect” myself from a special-needs child (other than prayer), and I knew that the possibility existed.
So what leads one to feel that they have a “raw” deal? It’s when you do everything right. When you lead a normal, productive, caring life, treating people properly, and nevertheless you get a “test” that is thrown at you “from the other side of the ballpark”. This is so unexpected, so implausible that you feel like you have been thrown into the deep end of the swimming pool, completely by chance, and totally unprepared.
Of course, the question is, what do you do with this “deal” once you have it? Do you wallow in self pity, or get on with your life? Do you swim or sink and drown?

I think a lot of the problem is when we brow-beat ourselves for getting into this mess… whether we did contribute to the problem, or not. Now I think that we have to do a reality check. We have to evaluate if we have made mistakes, correct them,…. and go on. We also have to say at times: I am not the one who is in control here. Being a good person is no guarantee of an easy life. It’s scary to admit it, but we cannot always protect ourselves from catastrophe. We delude ourselves that we can, but we can’t. That’s scary.

But the main thing is to get on with our lives. And not to forget to cherish those we love… including ourselves.

Tuesday, June 17, 2008

Our Trip to the Galilee (or Inclusion Vindicated) part two

Near the second river we waded along, we reached the Kinneret (sea of Galilee). On seeing it, and being told that THIS is the Kinneret, Ricki nodded in recognition (the Kinneret being one of those few landmarks on the map that Ricki was expected to be able to label). She gazed and added with wonder: “Gosh, its BIG!” She hurried to point it out and “share” her discovery with her classmates. We quickly reached Tiberius. There I took some pictures of Ricki along the shore.
The nicest part of the trip was the boat ride we took for an hour on the sea. It was a big boat, and the girls sang and danced. And Ricki was a part of the crowd, amongst everyone, included in the entire goings on.
As I watched, a happy bystander (I wanted Ricki to be with her friends WITHOUT me tagging along). my mind flashed back several years. At that time Ricki had been in first grade, at a different school. At the end of the school year, we received a disk with short videos of different highlights of the school year. I was horrified when I noticed that in all of the shots taken during the class trip, and even most of the in-class shots, Ricki was with her aide… and ONLY the aide. She was separate from the other girls, and “included” only in the fact that she sat in the same classroom. Yes, the girls would wave to her on the street, but never, in all of her three years there, did a classmate phone her. This school (which at the time was the ONLY school willing to accept her) was the school whose principal repeatedly told me that I was crazy to “include” Ricki. Eventually, I could see that they were not willing to learn to do things differently, and indeed I would be “crazy” to leave her there. I managed to transfer her after third grade to this different school. Here the studies are harder (this school jumped her up to her age level; in the previous one she had been two years behind her age group), but the girls accepted her… truly accepted her. In this school trip she was no leper.

I wish the principal of the first school could have seen her on that trip.

Our Trip to the Galilee (or Inclusion Vindicated) part one

Our trip to the north was lovely, especially for Ricki. The only bad part was the constant refrain of “Oh Gee, Rickismom, you’re amazing” from the teachers. I guess that they never expected someone of my proportions to go wading down streams (because most of them DIDN’T).
My first big pleasure from the trip was that when I pulled out a map of northern Israel to show Ricki where we were, she not only didn’t protest, she was interested. She is studying northern Israel right now in school, and I was sure that showing her on the map at points along the way would make the map more “alive” during geography studies. And then she even ASKED me for the map a various times throughout the trip.
The first stop was at “Nachal Kibutzim”, a small river one can go wading in. The bottom was straight, and the water was waist high. Since Ricki can float, and was with friends, I felt OK with her going in without me, especially as I would have her in constant eyesight. I was going to try and not go in the water, simply to avoid the hassle of finding a modest place to change later (bus drivers being known for not allowing soaking wet persons aboard). However, there was a busload of 7th graders from a different school making the same trip as we were. On entering the water, Ricki GRABBED the arm of the girl next to her, who happened to be from the second school. She was nice, and didn’t protest. HOWEVER, she had never seen Ricki in her life, and really looked as if she didn’t know what had hit her. (ie. She stood there, frozen in place.) So I went in, unlatched Ricki from the 7th grader, and got Ricki to loosen up. She quickly joined a bunch of classmates. I exited the water (hoping to dry out before reboarding). Then Ricki’s classmates really took over, even taking her on a “slide” to a lower pool.
The second stop was even more exciting. It was another river one walks along, but here the riverbed was full of irregular, slippery stones. When Ricki and I were in Colorado last year, we hiked along many mountain trails with stones like these. Ricki did not appreciate them (to put it mildly), but she did learn to navigate fairly well between the rocks. However, there we could see the stones; here we couldn’t. I will be honest and say that I did not enjoy this part of the trip, and was afraid that I would twist my ankle. By midway Ricki was only half coping, after some muddy water had splashed into her eyes, and had a runny nose as well. Then I slipped and fell. Nothing happened (except to my pride as a “hiker”), but Ricki became truly hysterical. So we exited a bit early. But within 5 minutes, Ricki’s friends had coaxed her back into the water, and they continued with her until the end of the water trail. (I had again opted out, deciding that I had had enough of stones I can’t see.)

Monday, June 16, 2008


No, this blog is not AWOL. I just had my normal Saturday break, and Sunday I was on a trip with Ricki;s class untill 11pm (arrived home at 10:45) I decided going to sleep was more important than the blog(especially since I could barely drag myself in through the door…) and today I have been catching up on a full day of missed housework. Hopefully I will get in a normal post this evening, as well as sometime soon a blog about the trip. Have a nice day!

Friday, June 13, 2008

Getting Fed Up

The real reason I posted the “courage” statement this last week had nothing to do with Down syndrome. It has much more to do with a person in my life who has been extremely critical lately. They have been ill, and I am hoping that as they get better, the verbal abuse will go down.
Last night I inadvertently interrupted their listening to the hourly news update, and I was roundly told off. So I apologized. So then I got told off for “apologizing all the time”. (What else am I to do when they get angry at every little thing?) I held my tongue, but I felt like saying:
-Sorry I am breathing.
-Sorry I am living.

Now I do not REALLY feel this way in general (I LOVE living). I guess that the person being discussed does not realize how negative they sound, nor its effect on others. But I, personally, am getting fed up with it.

Then I read Dave Hingsburger’s blog ( ) (an interesting blog on disabilities, but, again, I do not identify with all of his positions) yesterday on verbal abuse. I quote:

The woman in front loses patience with her daughter, "You need to shut up now, it's times like these that I can't believe I gave birth to you. There's a decision I'd like to take back sometimes." Shock trailed through the line up. Then the boy got a withering attack, "you were useless as a child and it looks like your going to be useless as a man.'
I looked at the woman's face, expecting to see hate there. I didn't. I saw something worse. Pleasure. She was taking pleasure in what she was saying. I looked back down the line. Everyone had the look that I was sure was on my face, "I want to say something but I'm afraid I'll make it worse, later, for the kids."

(Rickismom again)
(PS if you have a kid with DS, look up the original blog. There is an added story there…)

I know how I feel after one week (two?) of constant mild criticism. How could the children weather life if they have such a parent? The answer: they probably don’t.
And my reaction?
It is so easy to see the wrong in such a blatant verbal attack. Yet I suspect that any of us who are parents (excluding any angels who read here), should use this as a wakeup call. Are we guilty of a 5% attack? 3%? Lets each try to be a bit more positive and less critical today.... Have a nice day (and good “Shabbas” ie, Saturday)!

Thursday, June 12, 2008

The Math Booklet

Today I received in the mail a book with math projects that I had ordered. The sample I had seen online looked quite good, and the topics covered were largely what we need to work on with Ricki. Nevertheless, I rarely buy unseen stuff unless I am familiar with the author, have heard good things, or trust the publisher (like Woodbine House). I was hoping I hadn’t bought something I couldn’t use, especially as it is in English, and Ricki works in Hebrew. When I saw the postage my brother had paid (which I must repay), and mentally calculated the sum cost of the book, I gulped. “Well, it BETTER be good! “
Thank G-d, it was fine. The text parts are set out in a way that I can easily scan and translate them. And the ideas are as imaginative and fun as I had hoped.
So now, in my VAST amount of spare time (LOL) I have to scan and translate half of the workbook. So all of you British, American, and and Australians parents and teachers with special-needs students should just be HAPPY and grateful at the vast amount of ready-to-use materials you have available to use and purchase. And you can add to that thanks some gratitude for the books you can borrow to show your child’s teachers. Here they don’t have these same materials in Hebrew, and educators have looked at me like I am crazy when I was simply quoting accepted educational journals (like those of Down’s Ed of England).


By the way, I forgot to add yesterday that after NOT getting candy from the vending machine at the hospital…
(“Do you really think I’m going to buy you candy after you disobeyed me and drug your purse on the floor???!!??”)….
… Well, she was WONDERFULL for the rest of the day.
Limits DO work………

Wednesday, June 11, 2008

The “Every Day” aspect

Courage does not always roar. Sometimes it is a quiet voice at the end of the day, saying…."I will try again tomorrow". – Mary Anne Radmacher

Today I was with Ricki at the hospital for a routine check-up at one of the outpatient clinics. In the middle of our brief visit, Ricki decided to leave the doctor’s office and go out to gaze at the TV. So the doctor asked me, perhaps because for once Ricki wasn’t in the room, “And how is she doing otherwise?”
[He asked either because Ricki wasn’t in the room (nice of him not to ask in front of her), or perhaps he saw my FRAZELED face as we walked into the clinic. Ricki had pulled her purse along the pavement frequently on the way to the hospital, pretending it was a suitcase on wheels. And she continued to do so even after being given a warning and a punishment. Absolute rebellion…..And at arrival to the clinic she started clamoring for sweets from the vending machine….]
I answered that academically she was doing OK, but that her personality was and is her big disability, not the intellectual disability. So he said a few nice sentences about how most people have no idea what raising a special child is like, and the fact that it is an ongoing each-and-every-day affair is what makes it difficult. I laughed, and said that when I go to see new parents, I tell them that its not as bad as people think, but that if someone says it isn’t hard, they are trying to give you a “sell”. “It’s not called a “test” for nothing….”

Yes, courage is continuing to do behavior modification even when you would swear it isn’t helping that much.
Courage is finding that deep-seated belief you have in your child, even when others can’t see it.
Courage is toilet training a young special-needs child for three years, day after day, if that is what it takes. (It took me a long time with Ricki; other parents manage to finish much more quickly.....)

Courage is ____________ (fill in the blank). We all have “tests”, whether it is a special needs child, a financial problem, or keeping peace in a marriage or family. We have to hold on, not give up too easily….. and try again tomorrow.

The Disabling Disability

Yesterday afternoon I took Ricki to a dance/theater performance, as she loves to dance and act. And, indeed, much of what we saw done by the groups of girls performing was well within Ricki’s capabilities. However, I could never resister her for such a club with regular girls.
Firstly, I could never find a for-profit group interested in risking losing their clientele due to her.
Secondly, Ricki is truly very aggressive and on the look-out for arguments. (So much for the myth of “downies” being “easy-going, loveable…”.) THIS is her true disability, and the one which effectively excludes her. [Note that her agression is probably more due to her ADHD and not Down syndrome, and that with behavior modification is getting better.]

Tuesday, June 10, 2008

Sanctioned (by me) Truancy

I let Ricki skip school this morning. I had thought, mistakenly, that today was a “no school” day. But when my husband called me up and said he saw girls on the way to classes, I gulped. School starts at 8 am, and it was 10 to eight. Ricki was fast asleep in bed. So I called Ricki’s aide and we did a quick calculation. She said that school today was only from 8 o’clock to noon. The four hours of studies schueduled for Ricki were:
Bible (in class)
Ethics and Jewish thought (Yehadut) (in class)
Math (privately)
Preparation for geography (privately)

- Well, until Ricki would get up and get to school, she would miss Bible.

- Ethics would be entirely over her head, since I had not prepared her. (Ethics is one of the few classes I prepare her for at home. But I have to nudge the teacher to get the material, and I didn’t, not knowing that there would be classes…..)

-Preparation for geography would not be needed, there being no geography class following it, due to the short day.

-Math I can do with Ricki just as well, at home.

So I gave the aide a (paid) day off, and Ricki and I are enjoying the quiet morning. Soon I plan to do a bit of math with her, and study for a science test she has tomorrow. So way in the world do I feel so guilty!?????????? Oh, the problems of a perfectionist!

PS on Politics

Doesn't the behavior of the candidates, the accusations, lies, ect., just make you sick that these people are supposed to be our LEADERS?!?!?!!!

Monday, June 9, 2008

Shavous Stollers

This morning, it being a holiday, I had the chance to do something I don’t do very often. I sat in the armchair by our living room window, and watched the “world go by”. It was a shavuos holiday morning, which meant that there were no cars on the street. Instead, groups of people were returning from their morning prayers. Many had been up all night in the traditional celebration of the giving of the Torah. And I would like you to “see” a few of them with me.
First I noticed two teens walking along, slowly. They were obviously tired. Although tall, thin, and smiling, one was a bit bent over from his tiredness. His friend reached out, and draped his arm over his comrade’s shoulder. They walked on, comfortably chatting.
I saw a father with two sons. One was at least 13, the other I would gauge at about eight. The father was talking, all the time gesturing with his hand, his older son listening. The younger one was whopping it up, racing circles around the other two, letting off steam after sitting in synagogue for a few hours.
Next I noticed a group of about eight or nine friends, returning from prayers after a night spent studying G-d’s law. They had the animated movements of enthusiastic youth. One of these boys had a limp. His gait was rather jerky, one leg sticking out at a crooked angle. But he was part of the group.
The fourth “group” to catch my eye was an older couple. The man was tall and thin, with a bit of a spring in his step. His grey beard was flecked with a bit of silvery white, and it was long enough to catch the breeze a bit. His wife was of medium build, a bit short, and walked slowly. Her stance was a bit stooped and bent. When they reached the curb, her husband paused to turn and face her, giving her his hand to hold as she stepped down. I could only wonder if they were going to their own home, to a quiet meal, or were they on the way to a married child’s house, to share the meal with a bustling grown of grandchildren?
And the last to catch my eye (before I returned to the kitchen and my cooking), was a middle-aged man. He was slightly overweight, with sandy brown hair, and of medium height. But what drew my attention to him, was his walk. With a talis draped over his shoulders, he strode along the middle of the road, erect and leisurely, regally. I wondered why he was alone.

Sunday, June 8, 2008


I bought for Ricky about a year ago some paper dolls, hoping that this activity could be both fun and strengthen her cutting skills as well. Well, she make a complete disaster of the project. Recently I bought a new set, and this morning she took it out. After she had cut out one dress without the fold-over tabs, I caught her trying to glue the dress to the doll. After about five minutes of talking to her, and cutting out an outfit correctly to show her, it suddenly registered in her mind… to listen. I showed her how to do it (reminding her that one ALWAYS has to get instructions before starting things…). And she listened. GRIN.

Friday, June 6, 2008

As Easy as a Tuna Fish Sandwich

Last week I read a lovely story in "A Touch of Warmth". A childless couple was to visit an infertility advisor worker for lunch, as he was to explain to them the ins and outs of the newest procedure they were about to undergo. The worker asked: "What do you want me to order you for lunch?"
The man, feeling rather exasperated with years of treatment, replied "I don't want a tuna fish sandwich. I want a baby."
Without skipping a beat, the volunteer said:"You know, G-d can give you a baby as easy as He can give you a tuna fish sandwich."

Now, I don't expect a cure for Down syndrome tomorrow. But there are so many areas of our lives where we need help and solutions, whether it is with finding a good program for our child, getting insurance, finding time for siblings, etc. Etc. I don't know what we will be worthy to receive. But we have to believe, really believe, that it is in HIS power to do so.

The Cheshire Cat Grin

I just want to relate two small incidents with Ricki. Yesterday her older brother told me that on Saturday he had played cards with Ricki, and she won “fair and square”.

Today, I wrote a short text in Hebrew for Ricki to read. Hebrew is her native language, and a second tongue to me. But in general, my level is above hers, as I learn along with her, and yet retain more. But today as we were reading, she pointed to the word "pitom" (suddenly), asked “What is THIS?” I answered 'pitom'”. She replied, “It can’t be; it doesn’t have an ‘aleph’” (a silent letter). So I looked the word up, and sure enough, it has an “aleph”. I corrected it with a song in my heart. No only was she better than me at spelling that word, she asked about an unfamiliar word, and had the “gumption” to correct me.

Picture me with the grin of the Cheshire cat……

Wednesday, June 4, 2008

Experiencing It…(or) The Joy of Sleep

I had noticed that my son was spending way too much time on the computer. The problem is, his yeshiva also did…….he was obviously sleepy in class. So I have embargoed computer for him for a while. Then I decided that fair is fair, and that I am also spending way too much time on the computer on non-critical things. And, even worse, it is taking time away from more important pursuits…. Including a decent night’s sleep.
So yesterday and today I spent much less time on the machine. The result? Enough sleep. I felt entirely different. Suddenly, keeping my diet was not a lost battle. I had time for many activities. And did I miss the interesting news videos? Not really.
I had read often lately how sleep deprivation causes people to gain weight. I understood that sleeping would help me feel better. Today I experienced it.


As Ricki and I exited the bus, on the way to Ricki’s drama/dance class, I saw her ahead. Under the glaring harsh Mediterranean sun, this lady walked along, in a bright purple dress, and bright purple hair to match. She was definitely rather middle-aged, not a teenager who one might expect such psychedelic colors on. This is a business area, and she was undoubtedly going home from work.
This made me wonder a lot of things. First, did she dye her hair daily to match her wardrobe, or did she only wear purple? Was she an unmarried 35 year old desperately attempting to attract attention? Was she just trying to say “I have my own mind, I am an individual?” Or perhaps the opposite? Maybe that is the new “craze” and she wants to fit in???
In the end, I decided that it was her life/ problem/ craziness.
But I congratulate her that the hair color/ dress were a perfectly toned match…….

Tuesday, June 3, 2008

I Wish I Had a Magic Wand

I wish I had a magic wand for many things -a cure for illnesses, end of terror, etc. But if not for these big things, I would like a magic wand at least for these:
1) The mother whose child (with Down S) has an IQ of 69 and is refused an aid, because she’s “normal”.
2) The mother whose child with DS is included in a school. The school definitely needs instruction, but haughtily think they don’t. SIGH . Educators rank only under doctors in terms of haughtiness……(I know, that’s a generalization….)
3) The mother whose child desperately needs behavior intervention, but she can’t afford it.
4) The mother who wants to place her child (with DS, what else?) in a local school in a small town, and they are against accepting the child, just because they have no idea of the possibilities.

Monday, June 2, 2008


In the news:
“The Seven Network's All Saints program has sparked controversy after implying that Down Syndrome is brought on by incestual relationships.”


I think that if anyone considers these people as “normal”, we will have to revaluate what constitutes “retardation” and “disability”. Give me a kid with Down syndrome over this uneducated populace ANY day!

The Lie (make it plural)

I discovered with a certainty last night that someone I care about was lying to me. I had already guessed it, and was 99% sure that they were trying to play me the fool. I had chosen to not confront them, several times, for two reasons:
1) If they would choose to change to a better way of behavior, it would be easier to do so if they felt they had a good reputation to live up to. Aaron the Cohen (priest) was noted for treating people as if they were better than they were, and this impacted positively on them.
2) We are instructed by our sages to give others the benefit of the doubt, especially in cases were it will not hurt us to do so. So I decided to leave a 1% possibility in my mind that maybe this person was actually acting in the way they had claimed to be.

This is not the first time this has happened to me. Several years ago a relative with an alcohol addiction problem lied to me, and I believed them until the evidence was overwhelming. I am an honest person. I am as “straight” as a finely precisioned ruler. Years ago when I was “hippyish”, the poster/incense store owner called me ‘Abe Lincoln” for returning a few pennies I owed him. Thus it is hard for me to acknowledge that someone in the family would have the gumption to tell me an untruth, and painful as well. It is not as if I would have been angry at them. Two of my children have more than left the fold of Orthodoxy, and they told me the truth. I respected that. One even told me, when I asked a question he didn’t want to answer, “Mom, Don’t ask. You don’t want to hear a lie.” This son has at least learned to be honest.
Does this person feel that they were protecting themselves? That they were shielding me? In my mind, besides making me into a laughing stock, all they have managed to do is to destroy the possibility that I will ever believe them again about anything. Enough is enough. If you call “wolf” too often, you won’t be believed.

Sunday, June 1, 2008

The Sins of Our Youth

In the US news there is a story about an autistic child, mainstreamed, who was voted out of his classroom by his first-grade classmates. Apparently they were definitely egged on by their teacher. I find it amazing that two children in the class voted to keep the kid in the class, considering that the teacher was basically giving them the message to "vote him out"!

But I want to touch on another point.
Dave Hingsburger, a person active in the disability community, writes in his bog:
"The kid who was shunned by 14 of his classmates when put to trial by a teacher trained under supervision of Adolph. Everyone waxed poetic about the behavior of this teacher - the damage to the self esteem of that kid - the failure of mainstream education. And they should. These are all huge issues. Issues I'd like to write about. But can't.

Because I don't know if I would have been one of the 14 or one of the 2 who voted for him. God knows I experienced bullying at school, shunned for a thousand reasons by my classmates, made to feel isolated and alone. I can IDENTIFY with the kid. That should guarantee that I would have stood with him, by him, for him. But it doesn't and I know it doesn't."

I think that many persons, when they suddenly enter the "disability world" (by having a special needs child or some other contact with disability), feel guilty about how they treated the disabled in the past. And we all have memories of things we did when we were kids/in high school, that we REALLY would like to do over again, handling it in a more mature way. (I still feel guilty for a nasty remark I made to a kid I disliked in high school.) (Gee, I just thought-- maybe I can look him up in the class listing on internet and apologize. Not a bad idea....)
But I think that as kids, most of our reactions to the disabled will have been due to the input we received from our parents, and to a lesser degree, our teachers.

I was lucky that my parents raised us not to be scared of people with disabilities. I remember that when I was very young, we had no TV at home, and my parents wanted to let us watch "The Nutcracker Suite" at their acquaintances' house. This family had a child with Down syndrome, and my mom mentioned the fact before we went to watch the program. She did not want me to have a negative reaction to the child. (In the end we never met this boy. I don't know if this is because the child was being hidden from us, his parents perhaps being scared of our reaction, or if he happened to be asleep.) I have also mentioned previously (December 3rd) how my parents reacted to my friendship with a mentally impaired neighbor. But even I can not say with complete certainty that as a KINDERGARDEN kid I would have bucked the teacher's encouragement to prejudice.
So I will say that the biggest crime that this teacher did was not to the autistic boy, but to the remaining classmates, in that she taught them to HATE.

The Fun of Family

You know, having married children and THEIR kids over is fun. OK, it’s also a lot of work. (I decided I will clean up the living room in the morning). But the work is well outweighed by the fun:
The laughter over a shared “family” joke (which needs to be explained to the wives), the sharing of an inspiring story, the swapping of useful ideas. (My daughter in law tells me that dish washing liquid is a good anti-ant repellant.)
Its nice to see them interacting so well with their children. One of my favorite views from the weekend, was to notice that often a baby would be held by his aunt or uncle, if their own parents were busy with something else. They all pitched in to make the day as happy and nice as could be for everyone.
This is really priceless—a large family where all are attuned to the others’ needs, and are willing to “pitch-hit” for their siblings. I think we all had a good time.