Yesterday’s Fast

Yesterday’s Fast- #1
Yesterday was a fast day (25 hours no food or drink), from sundown Saturday until 8PM Sunday. Here in Israel, one usually doesn’t feel hungry, but rather thirsty. Anyone with any sense stays in an air-conditioned area most of the day.
(Now any of you who are overweight shouldn’t think that this fasting helps with weight control. One usually has a decent-sized meal before the fast, and a hearty one afterwards, so that stretches the stomach. So anyone who diets with frequent, very small meals, and whose stomach has adjusted to that misses out!)
What is interesting is that once you have a “given”, a firm resolution, that you are fasting, the yetzer hora (evil inclination) sort of disappears. Even if you get hungry, you shrug that off and go get busy with something else. The chocolate in the high cabnit (YOU would never bring it home, someone else did you the “favor”) doesn’t “sing” to you. The kids leftovers go to the trash without qualms of “waste”.
So why is it so different when we diet? OK, if one diets successfully for several days, one can also get the feeling that overeating is not a choice or viable option. And the stomach shrinks, and that helps too. But why is it SO much more difficult not to eat on the first days of a diet, than on a fast day? I think there are a few reasons:
1. The commitment is stronger, the sense that “I can not fail” is greater. If I wouldn’t fast, my 16 year old would think I went crazy, and as for dieting… he probably expects me to not succeed. So when dieting, a failure is less damaging to my self esteem.
2. On a fast day, I expect to have less output. On minor (daytime only) fasts, people pretty much work as usual. On a major fast day, no one expects you to accomplish the usual by the afternoon hours. When dieting, we force ourselves to “carry on”, even if we feel terrible.

So I can think now of a few hints to help start a new diet. One is commitment. Make it strong. Non-negotiable. Maybe promise yourself a prize for the end of “one week on” that is big enough that you won’t consider falling back.
Second would be to try and start a diet during a time when you are busy… yet able to give yourself some slack if needed. Don’t start that new diet just before Pesach (Passover), when you can’t dream of resting… but rather during a time that an afternoon nap can be fitted in if you are “weak and ravenous”.

Yesterday’s Fast- #2
I did not expect Ricki to fast on Tishe B’Av (the fast). I decided years ago that our “fasting” energies/brainwashing/ etc will be saved for Yom Kippur, the most serious fast. And besides, Yom Kippur is NOT in the heat of the summer, which makes it easier.
However, I did make it clear that a big girl like her could jolly well not eat at night (especially after a full pre-fast meal). And she was OK with that. In the morning she had a fried egg, but skipped the bread as it got burnt. And then she noticed that everyone else was fasting. (There being no young children in the house.) So she stopped eating. She stopped drinking. For a girl that LOVES eating, this is a major feat, and shows just how important it is for Ricki to feel like everyone else. It’s important enough for her to forgo food and drink. She finally gave up an hour before the end of the fast, but she deserves a real ovation!

Destroying is Easy

Today is the day we mark the destruction of the Temple in Jerusalem. It is a day of mourning and fasting. (If you’re asking why I’m blogging, I wrote this last week….)
You know, it is so easy to destroy things.
-You can ruin a day of school if you yell at your child as he goes out the door.
-You can devastate someone’s self-confidence with a smirk.
-You can demolish (as someone did here recently) a private lesson by interrupting with something not related (in our case, an animal that scared Ricki).
-You can obliterate relationships by not giving people your time (like if you are on the computer too much).
-You can wreck relationships by being over-demanding and critical.
-You can crush people by insisting that they be carbon copies of you.
-You can shatter a child by showing him through actions that you don’t care.
-You can extinguish some of your inner purity by too much self-centeredness.

Building takes longer. But it’s worth it. Each stone in a wall of positive action has reverberations. My mother once said: “Nothing worthwhile is accomplished without work.” How true! I hope I can apply it to my life.

PS on the Previous Post

Ricki wasn't rejecting anyone, she just didn't understand it!
The rejection I was talking about is that I have heard about on occasion, of special ed teens/adults with NO contact with special ed kids, saying they want to marry someone "normal" and the like.
Sometimes it is hard for the higher-functioning kids to find their niche. Here in Israel, the authorities discourage high-functioning kids with DS from mixing acedemically with kids with learning disabilities (even if the child with DS is doing better scholastically). And in order for a class/club/ etc. to have enough kids to get funding or manage otherwise financially, the "retarded" group will have a range of abilities. So many times the higher functioning kids lose out socially, feeling "too good" for where they are.
For example, high school inclusion is unheard of here. We were from the ground-breakers for grade school inclusion. In one year, when Ricky will finish eighth grade, I may be forced to put her in special ed, and I know the girls in that class. She is way above their level.
However, at club, Ricki bonded to the girls despite their lower level, as they were having fun together. And going to the club has helped Ricki come to terms with the fact that she yes has something called Down syndrome, and that it is not necessarily a bad thing.

Teaching Compassion

One of the reasons I have Ricki participate in a special-needs gym club each week, is so that when she will eventually go to a “special” classroom (at a yet-undetermined time, but probably in high school), she shouldn’t say “Hey, I’m ‘normal’ and this is not for me!”. The other reason is so that she should have contact with others with Down syndrome, and see them as PEOPLE. I think that one of the saddest things is an adult with Down syndrome who is prejudiced against others with disabilities.
So now that it is summer vacation, the club has a month’s break and Ricki nearly every evening tries to call at least a few on the teens from the club. Yesterday she called her best friend from the club. This girl has had excellent teachers all her life, and is very adept. But when she spoke to Riki last night, she started stuttering.
Ricki didn’t realize what was going on, and was getting a bit angry. “’What what what’ won’t help me!’ she complained to her friend. So after she got off the phone, I had to explain to her what stuttering is, and that she needs to accept other’s limitation. Will this be a one-time lesson? NO. But- she has to learn it, just as everybody does.

Just Too D#*mn Smart

Yesterday Ricki offered to go to the grocery store. She often does, and the cashier there tells me that she behaves better than when I am with her. So she wrote a list, and was prepared to go.
-“Let me see the list, Ricki.”
She balked. That set my radar on full power, and finally I saw the list. In addition to some things we needed, and some which we didn’t need , Ricki had written:
1 snack
3 borekas (a potato-filled puff pastry)

Well, well… I was not surprised. She LOVES borekas. So I explained that going to the grocery does NOT include buying sweets, and not buying things that she knows I don’t want. She appeared sorry, and wrote a new list, minus the “extras”.
As she exited the house, I spied the pen in her hand. When she wants something, this girl can be SO smart, her IQ must be 80 at least - at those moments. Wish she’d channel that brainpower over to her math skills……..

A few minutes later, I phoned the grocery, and she had YES purchased borekas. Guess who won’t be going to the grocery for a while……..

Learning Versus Tests- the Stapler

I remember several years ago reading in the book Teaching Children with Down Syndrome to Read (by Oelwein, Woodbine House) the difference between learning and tests.. She was teaching a child to read, and an observer “caught” on that the child was looking at the picture (ie., he did not yet know the word), and said “He’s cheating!” Ms. Oelwein replied, “I’m teaching.”
[ A side note here. This book has an excellent section on HOW to teach children with Down syndrome. Another book, with an even more extensive section on “how to teach” is Steps to Independence (Brookes Publishing), and I heartily recommend both books.]
Sometimes, as we endeavor to teach our children, we can end up “testing” them before they are ready. If they are learning, props can be consulted when needed.
Which brings us to Ricki. Last night I saw that Ricki was trying to fill a stapler with (what else?)staples. I immediately realized that this was an opportunity to teach her a very useful life skill. I told her that I could see that she was having problems, and that I could show her how to do it. She got a bit defensive (I’ll do it on my own), but was not succeeding with the stapler.
“Ricki, its OK that you don’t know how to do it. I never taught you, and you just need to LEARN how.” Luckily there were two staplers on the table. “I’ll show you with this one, and then YOU can fill the second one.” So I showed her, and then she very successfully did the second stapler. However, as she was filling it, she turned her back so that I shouldn’t see.
“Ricki, there is no reason why you should turn your back. This is not a test. You are learning something NEW, and if I see, I can help be sure you are able to learn this correctly… I am not testing you.”

Yes, I’ve Seen Her in the Grocery Store

Yesterday I was at a meeting attended by, amongst others, some people I rarely see: those who work in special ed. My attitude towards this group is rather two-sided:
-I admire them for doing a hard job at minimal pay, and understand that they care…
-Yet I am equally frustrated by their (often) lack of knowledge in the new ways of teaching children with Down syndrome, and their attitude of not expecting too much.

After the meeting, one of the younger teachers talked a bit to me. She asked if we use grocery store “X”, and I replied affirmatively.
-“You know, I’ve seen your daughter there. She’s really quite nice.” She said this without a trace of patronizing; it was a pure well-meant compliment.
I answered with a wry laugh: “Yeah, when she wants to be…”
She also laughed, and added, “Yes, just as with all our children….”

Younger staff is slowly coming into the schools. Some have had a bit of exposure to new ideas. In addition, parents are beginning to insist that special ed school staffs see good things being accomplished in other schools around the country. Things are still VERY far from perfect in the schools in our city. But I see a stronger willingness to be open to new ideas. I am glad for that.

Pollyanna and PBS

Its so easy to be negative. You see a negative behavior, and the first thought can be: “O.K., How do I punish her so she’ll stop?” But it doesn’t work. Punishment breeds anger, and that doesn’t get you very far. And, in my experience, children with Down syndrome lap up negative attention like a cat coming out of the burning sun.
I happened to watch the movie “Pollyanna” with my son the other day. Funny as it sounds, I had never seen the film. And it gives a clear message: The POWER of positive reinforcement.
PBS is short for Positive Behavior Support. In this system, the focus is not on punishment, but on supporting and encouraging good behavior. Experts on Down syndrome have told me how important it is to center on promoting what we want, and not punishing the bad.
So the first thing that should come to mind when a kid misbehaves should be:
-“What do I want?”
-“How do we get there?”

So when I saw Ricki getting dressed for the umpteenth time in front of the living room window yesterday, it suddenly hit me: Yelling at her that this is a public place is not working. She KNOWS that. For some reason she wants to get dressed there. So now I have to analyze the situation, figure out what is going on, and make a plan. Because negative attention just DOESN’T do it.

Home from the Hospital (not us) or After the Wedding

I want to mention a point that I noted (in passing) on someone else’s blog today, as I think that it is an important point for families to know, especially those whose children are sick often.
Often when people have a child in the hospital, they think that at least while sitting there, they can get some knitting done, etc. However, this is often not the case. The illness, and hospitalization cause enough nervous energy to make doing a steady task difficult. Usually parents can accept that without too much problem. However, when the child is finally discharged, they are likely to think that now that they are going home (after “lounging” around in the hospital for X amount of time), they can tackle the world. Finally you can clean up the mess (OK., the looks-like-a hurricane-hit-the-house-disaster-area). Now you can cook decent meals. You can do the laundry.
That's why I tell parents coming home from the hospital not to think "Well, now that I am finally home, I can get something done..." It just doesn't work. You need a few days or weeks just to regroup and unwind. (Besides, you’ll have to field calls of well-wishers as well.) Sometimes your body and spirit need to regroup from the stress and excitement.

P.S. This is also true of post-simcha days (after a wedding, or other celebration). So lets hope we will be “wiped out” from good news, not bad!

Cloth store and Vegetable Store, and the Phone: Independence!

As I mentioned on Monday, I was with Ricki in the cloth store, buying cloth to make a dress for her sister’s wedding. The saleslady showed us several samples. Her first selection was nice looking, but I was afraid that, being light pink, would not look good on Ricki’s large figure. So I asked for a second set of fabrics. The second set did not suit my fancy, but I did not need to protest. Ricki piped right up; it did not suit her at all. The third idea suited both of us, and that became our purchase. The sales lady was so impressed by her maturity, her independence.
The next day we had to go buy some vegetables. Ricki did virtually all of the work, and the only thing I could find fault with was when she put the tomatoes under heavier items. I often send her to this store with a small list. I suspect that soon she’ll be ready to do the weekly vegetable buy.
Today, on Shabbas (there is no traffic in our town on Shabbas, Saturday), Ricki walked over on her own to a friend’s house, and as I told my husband, “why not?”. Later in the day I refused to let her go a second time, since the friend was not in, and I was afraid that Ricki would make a pest of herself to the friend’s older sister (who had entertained her during the first visit).
Meanwhile, I have received several phone calls over the last few days. Ricki has made various phone calls, often several at one sitting to someone who is out. She gets the answering machine, and apparently doesn’t realize that they are not home. The nicest story came from Ricki’s sister-in-law, M. who told me that Ricki had requested that they come for shabbos (Saturday). M. told her that she would talk it over with Ricki’s brother. At the end of the 5 minute conversation, Ricki reminded her to ask her husband, and the next day called to hear the results!
It is obvious that Ricki wants more independence, and I guess I will have to teach her about putting the squishable fruit on top, and about answering machines. If she wants that independence, it’s a sign that we have to go for it!

The “Club”

One day about a week or two ago, I was out with Ricki, and we stopped to look at some books. I decided to purchase on book, and asked the storekeeper for the price. He noticed Ricki’s hearing aid, and asked if she had a cochlear implant. I said “No, it’s a regular hearing aid.”, and he looked disappointed. It turns out that he had a child slated to get a cochlear implant in the near future.
One of the nice things about having a child with a disability is the “club”. Parents have a tendency to give each other that “knowing nod” when they pass in the street, along with a smile. A few words, a smile, exchanged while in line at the dentist or physiotherapist. Sometimes even a discount at a store. The best is the way they treat your child…..like a person. Today I have to send Ricki with her brother to pick up her new eyeglasses. I can confidently send them alone, not only because my son knows how to manage, but because the store owner himself has a young adult son with Down syndrome. He knows just how to get her to cooperate, and never treats her condescendingly.

I Hate Shopping (With Ricki)

Yesterday I had to do some shopping with Ricki. In the morning we had to buy school supplies, and in the afternoon clothing. Normally I wouldn’t buy clothing at this point of the summer, but I received a letter from Ricki’s overnight camp, and they expect us to send 10 days worth of clothing, plus some reserve. Well, we are no where near that amount of clothing, so I went to buy some.
I don’t know why, but Ricki is inevitably TERRIBLE when we go shopping, especially for clothing. In the morning she was ALMOST “passable” on behavior (kept trying to play with the cash register in the bookstore, took a bit of stuff before asking, sat on the floor only once). In the afternoon she was pretty bad. She kept sitting on the floor, running away, etc. At least this time I was VERY firm with consequences (walked out of two storse, didn’t buy her a drink).
This morning we have a bit more of shopping to do. Ricki woke up and asked if we were going shopping. I answered affirmatively, and stressed that I expect her to act like a big girl. Before we go I plan to spell out clearly my expectations, and the positive/negative consequences of proper decorum or lack thereof. Wish me luck! (I will try and post an update).
* * * * *
Later in the day:
Ricki was better today. Mind you, that did not stop her from moaning as if in transition phase of labor a desperate “I’M HUNGRY……” when passing the popcorn stand and creating a real scene. [The popcorn man, on hearing my repeated refusals to buy her any snacks, immediately offered to give her some. He actually took a bag and started filling it… ( I said “Mister, do YOU give your kids EVERYTHING they ask for?????”). He really only desisted because I walked away, and Ricki followed. Some people just don’t get it.]

Dr. Jekyll and Mr. Hyde

Sometimes I feel that Ricki is like Dr. Jekyll and Mr. Hyde—or like the little girl from Mother Goose with the “curl in the middle of her forehead”. Because when she is good… she is very good… and when she is bad… she is horrid.

Yesterday at swimming she was good most of the time. However, near the end of the lesson she spat at the teacher (who, thank G-d, gave Ricki a piece of her mind). Then she acted the same way to a teen there. Of course there were “consequences”, and she was contrite, but I was very adamant that I was not forgiving her as this is an activity that has often been repeated. Next week we have to skip the lesson for technical/religious reasons. But she doesn’t know that, and she will be informed next week that swimming was cancelled because last week she spit.
Then, later in the day, I had no choice but to take her with me to a meeting in Jerusalem. I bought her a new book to read there, to keep her occupied. However, the meeting took MUCH longer than I had anticipated. And Ricki sat there quietly for two and a half hours!!!!! So she was “very, very good”.

Man Plans…Mom Plans

Before this summer vacation, I had SO many plans of things I would do with Ricki. I knew I couldn’t plan too much… after all, about half of the school break was slotted for day/overnight camps. But in the other four weeks, we would cook, sew, fold laundry together, study a bit, and have tons of fun. But I’m a week and a half into one of those free periods, and have little to show… we’ve done almost nothing. Part of this is because we have been doing some shopping for the upcoming wedding. But after a lot of thought, I have to admit that the main culprit is the computer. I LOVE reading and the computer provides such interesting stuff!
But long term, what will I get from most of what I read on the net? Not that much. So I’ve decided that I have to really limit how much I read and spend time on the computer, and spend more time with the family. Problem is, I’ve made that resolution before, but only have done partial changes.
So if you read this blog, I love comments…and appreciate knowing that the blog is read. But probably will not be able to regularly reciprocate and read the blogs of others, except a few. I just can’t. Family and real people MUST come first.

The Good, the Bad, and a Decision to Have Compassion

Yesterday evening I went with Ricki to the fabric store. We bought cloth to sew her a dress for her sister’s wedding (in three months). We bought cloth for something very similar to what she wore for the last family wedding 4 years ago: A black top, a pink skirt (last time was red), flared, with black lace over the skirt. [ See the picture to the right, which shows the dress she wore four years ago.] As the lady showed us various samples, Ricki was very emphatic about what she liked… and didn’t like. The saleslady was impressed, and I was pleased. (I was extra pleased because it just so happened that she agreed to what I also wanted, though the choice was hers. I did limit the choice to things I felt were reasonable.) Sounds like such a big girl, no?
So then, why in the middle of the night did she make in her pants? Sometimes she can be so adult, and sometimes so small!
I was awakened to my husband’s growl that Ricki had been in the bath for an hour, and that if I wanted to save the water level of the Kinneret (Sea of Galilee), I better check what was going on. I demanded entrance to the washroom, only to discover Ricki getting dressed. However, the tub was completely blocked up from fecal matter. I decided at that point that she needed some compassion. She had made a terrific mess, but… she had also tried so hard not to wake anyone up. She had managed to exit that filthy tub 95% clean. For the next half hour, I unstopped (with a real plumber’s metal coil) the tub, and flushed out the drain pipes with a strong flow of fresh water. (Sorry about the Kinneret, but I didn’t want any gunk to stay in the pipes under the bathroom floor, to add an “aroma” to the house.) Then I scoured the tub. All this took about 35 minutes. Then I had Ricki rewash herself, get dressed, and go to bed. (She was more than willing to get up, stay up, and read a book, but I did growl at that point: “Ricki, it is the MIDDLE of the night…..”)

I suspect that her intestines can not take the summer fruits…. Or that she ate several tomatoes. (Tomatoes, being first cousins of catsup, are her favorite “fruit”.) So now she wants to sign off fruits…. But then she’ll go back to tons of bread. Seems I can’t win for losing….

PS. It would be real tempting to post just the first half, about the cloth store, and leave out the second part, which might be SO discouraging to new parents. But I want this blog to be a true picture of what life with a teen with Down syndrome can be like. And, having spoken to many parents with teens, the consensus is that even though they are usually very good at managing their toileting needs, “accidents” do happen. It could be that part of this is due to the fact that their bowl may not be 100% OK.

“YES? NO??” and the Case for Education

Now I am going back to over a week ago, when I was away at a Down syndrome conference. I felt the vibration of my silent cell-phone and quickly fetched it from my briefcase. “Hello?” Ricki’s evening babysitter was on the line.
-We think that maybe Ricki get her period.
-What do you mean, “think”? (Oh no! Just when I’m away she has to get it the first time!)
-Well, her dress had some mud, and the teen who took her to the park said that she had a stomach ache, so maybe…..

Well, I’m not even going to tell you if she had gotten one or not. That’s an invasion of her privacy, and none of your business. However, the question of “Yes or No?” was not answered for several hours, as Ricki was very discreet about changing her clothes, bathing, etc. But the fact that I had prepared her in advance, and that she knew what the word meant, calmed me considerably when I realized that she might have to face this with just the neighbor’s help, since I was several hours away. (Plus she had no sisters around to fill in for me.)

So imagine my horror when a mother announced to the group of women at the conference how she had prevented her daughter from speaking inappropriately by not teaching her… and that she had had the luck that her daughter was at home when that first menstruation had arrived.
I had felt the need to protest. Education is a must. And so is education in modesty. And that education does not begin at age 11 or 12.
Modesty in dress/ talk,
private/public places,
private/public actions, etc
must be taught slowly for several years. THEN you have a chance that it will be ingrained enough to be effective when the need for it arrives.

Three Short Pieces for Friday and Saturday

“Cheer of Down syndrome" campaign
Ricki can occasionally be open and talkative when meeting new people on the bus (buses here are social, see my post “Buses in Israel from Tuesday). Other times she may stick out her tongue! (Actually, she no longer sticks out her tongue--we've been working on that!)
I guess the difference is the "Vibes" she sees. The problem is, little kids, not realizing WHY she looks different, have a tendency to stare. Then she stares back, scowls, and growls, and scares them completely. So much for our "spreading the Cheer of Down syndrome" campaign!

She also likes to coo at babies on the bus. Some mothers handle this very well, and others don’t (especially if two minutes ago she scowled at their toddler!).

In Defense of Chareidi Education
In the latest group of psychometric exams in Israel, the ultra –Orthodox (chareidi) students taking an ultra-orthodox course to prepare them properly did better than the national average. This was despite learning English from scratch.
These figures are a support for the ultra-Orthodox approach of teaching mainly religious subjects through high school, along with the 3 R’s and a bit of science,. It has been shown that those students who do want to continue on to learn a profession are able to make up the lost material very quickly, because they have learned to STUDY in yeshiva.
While there are, in my mind, things that can be improved in our school system, these figures should be a relief for grandparents who are afraid that their chareidi grandchildren will not have the ability to study and learn a profession later in life. And the advantages of chareidi education: a very low rate of drug use, no violence, no teen pregnancies, and respect for elders---- are implicit and attainable.

Calling All Researchers!-The Catsup Connection
Anyone want to do an interesting piece of research on Down syndrome? If you do, so try and discover the link between the 21st chromosome and catsup. I’m not kidding. I am positive that there must be a connection.
I have spoken to several parents, and have yet to hear of a child with DS who doesn’t love catsup. In fact, it is high and noticed very often on the list of “favorite foods”. Ricki doesn’t particularly like sweets—but put catsup on a food and she’ll eat about anything.
Now, I can hear you countering: “But ALL my kids like catsup.” Yes, I know. But they also like peanut butter, white cream cheese, tuna and salmon spread. Ricki (and many other children with Down syndrome) want ONLY catsup on their bread. Believe me, I keep trying to indoctrinate her taste buds with low-fat cream cheese….. but it’s:
“Catsup, catsup, we scream for catsup!.”

The Hearing Aid: 8 days

I don’t know if any of you noticed in yesterday’s post, but Ricki’s hearing aid had been out of use for about 10 days. For a few days we had not been using it because the school aid complained that Ricki was taking it off a lot, and we were afraid it would get lost. So I also choose that she would not wear it during my vacation. Since she would be staying at several places throughout the day, the risk of it getting misplaced was just too great. So I carefully placed it by the telephone, in its case, sure that on my return, I would immediately make a star chart with prizes for wearing it regularly.
Then, Sunday morning, an hour before my trip, I noticed that it was missing.

My heart sank. This tiny piece of electronics costs about $3,000. And while she CAN get by without it short term, she needs it long term: to hear better and more clearly in school, for language improvement, and to save my sanity (since without the aid she puts her tapes at TOP volume). [Try listening to some idiotic children’s tape at top volume ten times in a row, and see if you are not a candidate for the “funny farm”.] However, $3,000 is about a tenth of our yearly income. The original aid was paid in part by the health department, but I quickly checked and learned that they do not pay for replacements every year. The good news was that unless Ricki tossed it out the window (not impossible, but improbable), it was somewhere in the house. Each phone call home during the conference started with my query: “Did you find the hearing aid?” Answers were negative.
On my arrival home, I unpacked, and the next day started the “Clean the house thoroughly and FIND that aide!” campaign. On Thursday I promised 100 shekel (about $30) to charity if I would find it. No luck. Friday I had no time to look. Then Sunday, I promised a double amount (pointing out to my husband that this was only 2% of the cost of a new one). But this time I said “Omar Rebbi Binyamin” ( a special prayer for finding lost objects), and I found it [“EUREKA!!!!!”] behind some books on one of my 50-some bookshelves.

The aid had been missing for a total of eight days. I was thinking about starting the process to get a new one, afraid that Ricki had chucked the old one out the window. (Once, about 6 years ago, when definitely old enough to know better, she had cast a piece of silver outside to the sidewalk below. I am sure the finder was amazed that someone had thrown it out….) We see that monetary loss can cause a lot of action and concern..The question is, as I even one tenth as worried about my weight? My health? My Midot (personality)? I wish I could answer positively…..

Discouraged

Yesterday evening I was so discouraged that I didn’t even feel like writing. Ricki had done marvelously at swimming lessons, despite our having missed the previous two sessions. Then in the last five minutes she “ burnt the cake”. She acted atrociously (sticking her tongue out and spitting, and throwing stuff into the water) and we had to remove her from the pool basically by force, to enable for the next student to go in. Then she misbehaved on the bus home, and at home. Also, before the swimming lesson she purposely wet her hearing aid (luckily the $3,300 aid survived), because she felt like not wearing it. (I had made her a “project” to wear the aid and get used to it again after it had been lost for 10 days….) She also managed to break her last pair of eyeglasses (at least just the leg). I realize that this may all be because she suddenly finds herself in a less structured day (even though I do give her some structure), but that fact does not excuse it.
. It will not help her get along with others as an adult
.
Then this morning, she took 3 pita breads (equivalent to 12 slices of bread), thinking that this would be her breakfast. I mean, REALLY! Obviously, her meal was quartered, obver her protests. Again, she overeats when there is little to do, but even THAT should have a limit.
In short, as we enter her first non-day camp week of vacation, I find myself setting limits every moment. I try to be positive, using positive reinforcements, praise, etc., but it is hard when SO many negative behaviors are occurring. I find that Ricki is getting way too much negative attention, if not from me, than from other family members. And I really put her down verbally at one point yesterday evening, which does not help neither her nor my discouragement.

So I guess she needs a bit more structure, filling her days with fun activities, and also some crafts (to express some of that anger) as well. But to fit this in with my need to catch up on housework, etc., is rather challenging. I feel like I need to be superman. But its hard to be wonder woman when you only had four hours of sleep (this time NOT my fault; I am shutting up to protect the guilty party, but it isn’t Ricki).

“Try this Tuesday” #1

My regular post for today is below this one. This post is part of a "share-ideas" posts by several blogers. People who are not parents of special-needs kids, can skip (although much of this info is usefull for ANY parent with small kids....)


For learning letter names, as opposed to sounds, we baked bread dough in letter shapes. It was a fun activity, and we talked casually about the names.
* * * * *
When toilet training Ricki years ago, we covered the sofa, armchairs, and the like with clear nylon tablecloth. Made it less tense…..
* * * * *
Kids learn to climb up on the sofa before they learn to climb down. During that interrum, they tend to take flying leaps off the sofa, and if you have non-carpeted floors, it can be scarey! (Especially here in Israel, where the floors are STONE!)
So we went to a carpet store, and bought a scrap piece which was longer than the sofa, and about 2 feet wide. Then we took it to an upholsterer, who sewed around the edges. We slipped one long side just under the sofa legs, and we had head protection!

for more ideas, click this button, and there click the Try This Tuesday blog for today. There will be an idea there, and more at the bottom of the page:

Buses in Israel

Last night as I went to sleep, I suddenly realized that those of you who do not live in Israel may not really understand my last post. People in America do not interact very much with each other of buses. For people not to have commented when I corrected Ricki would be expected.
Oh, but in Israel, it’s not like that. Riding buses in Israel is an experience.
First of all, Israel is a small country. And people care about each other. Remember when that lady was killed in the US (in the early 60’s) and cried out for help for half an hour, and no one called for help? That would NEVER happen here.
First of all, when you get on a local bus, you are very likely to meet up with a neighbor, friend, daughter’s former teacher, etc. And even on a non-local bus….occasionally you meet that old neighbor that moved away, your neighbor’s sister, etc. And of course, these “meetings” on buses are often not just acknowledged with a cursorily nod. People will gladly exchange places with you so you can spend your ten minute (or more) bus ride “catching up” with what is new in your friend’s life.
And even if you don’t know anyone on the bus.… well, people here have no qualms about expressing themselves. If you would go on a bus with a baby in a sweater in the summer (maybe you just came from an air-conditioned building), people would tell you “Lady, can’t you see that your baby is hot? For G-d’s sake take the sweater off!” New young mothers hate this off course, but it IS because people care.
And if you think that you can have a private conversation with your daughter in a foreign language (not Hebrew), think again! Whether it’s French, Spanish, English, German, or Portuguese, you are likely to get a tap on your back. “Excuse me” someone will comment in that language, “Where do you hail from?...... Oh, from __________? Maybe you know my Aunt So- and So who lives there?” Now “there” may be a huge metropolis, and you have a better chance of winning the lottery than knowing her Aunt Tessie from wherever…… although, amazingly sometimes you actually do!
And, in Israel, people actually DO stand up for the elderly and the infirm, and for pregnant women. It’s because it’s a mitzvah (good deed), and besides, someway, somehow he is probably related to someone you know……. and gosh, wouldn’t YOU give your neighbor’s 2nd cousin’s granddad a seat?!?

One Step Forward, One Step Back? Maybe Two Forward….

Gee, a lot of little interesting things have happened lately. At least it will give me what to write about!
Today, coming home after dance class, I went to the supermarket to get (cheaper) diet ice cream sticks. (An essential in the hot, humid summers we have here…..) Unfortunately they were all out…..
BUT Ricki acted very good in the store. One step forward.
One step back:
But then, when we got on the bus to go home, she went to the back and was either given, or she asked for, someone’s almost-finished bag of potato chips. I of course did NOT put up with this. In no uncertain terms, Ricki was told that “We do not accept gifts from strangers”. So she quickly acquiesced.

Two forward?:
The nice thing was that for once, no one piped up that she is cute and sweet. That I should let her have it, etc. One reason may be because the lady who gave her the bag was way to far away to protest. But I saw a few faint smiles as I told Ricki that she is not a charity taker, and I think people understood. Also, I spoke without raising my voice, which of course is good in any case

The Most Important Lesson- Re: “Special” Children

(see first today's earlier post)
It is extremely important that we convey a message of love to our children with special needs. For them, the need is even greater. Why?
1. We tend to push them to learn new things; they may interpret failure to learn something as an inhibiter to our love.
2. People on the street stare at them, not always kindly. This may make them feel unlovable.
3. People may gush and say platitudes, or demean the ability of our child. Almost all kids with special needs will eventually come to realize that this is also a demeaning of their worth.
So our children are very vulnerable. What can we do to show them our love?
1. Explain to them what their disability is, and what its effect are. This is an ongoing process of several years in some cases. Be sure to not sound negative about the condition, as it is a part and parcel of their existence. If their disability is visible, explain that they will have to learn to deal with staring. (You can help them learn to deal with this.)

(When Ricki was small, I made a book about children with disabilities, and the “aids” that each person needs. The hard of hearing person needs a hearing aid; the person with CP needs leg braces, etc. On of the disabilities was Down syndrome, with the picture of a friend’s child, not of Ricki. I said that this girl, who had trouble learning, used a computer (in the meantime) to write. Later on I told her that she also has Down syndrome, and what that meant to her life at that time. (On later occasions I have updated that “what it means to you now” part of the conversation. Once when she was talking about getting married, I shared with her the knowledge that Down syndrome will make finding a spouse harder. –See “We Plan and They Plan", November 21st’s blog)

The main point here is to show that the disability is something they deal with, but not them. And that it does not affect your love for them.

2. Yes, you can push your child to learn things. But it has to be fun, and with love. Try to make the study connected to things that he enjoys.
Its OK to sometimes say:
- “I see you’re tired. We’ll try again tomorrow.”
- “I see you didn’t learn this yet. Don’t worry, you tried, and that’s enough.”
- “I really see that you are trying hard. But that’s enough for today.”
(With Ricki we had a phrase: “We try a bit, and try each day, and in the end we will succeed.”)
Above all, study time is not a time for anger. And if he isn’t trying? See the next point.

3. When the child misbehaves, doesn’t try, etc. etc, consider using POSITIVE BEHAVIORAL SUPPORT., not punishments. For those unfamiliar with PBS, I recommend highly the book: Parenting with Positive Behavior Support, published by Brookes
(see: http://www.brookespublishing.com/store/books/hieneman-8655/index.htm )

4. Insist that others speak to your child, not through you, and that they address him by his name, or otherwise appropriately (and not, “sweetie”)

The Most Important Lesson

There are SO many things that we have to teach our children. But the first is that we love them. And this lesson is one that must be taught again and again, until the child feels it through his bones and then more.
And if you ask me: “What, Isn’t fear of G-d more important?”
Well, if a child doesn’t know that you love him, he has no way of imagining that G-d does. After all, if his OWN parents don’t love him, than he can only feel unworthy of ANY love. Who will love him if his parent’s can’t? And I will add that the best way to get a child who is “off the way” to return is to accept him and love him.
Now, I am sure that ALL of my readers know that they love their children. But do they know it? Did you ever look in a mirror when yelling at your kids? Do you know how awful that looks?
I will be honest enough to admit that I yell at my kids. I am not proud of it, but I am not pretending here to be perfect.
But I also:
1. Listen… even when my 20 year old admits that he no longer wants to live the type of life I would like him to. I may mention that fact in passing, but I will be sure that he knows that I love him despite this. And that I admire other aspects of his personality. And that he must stay in contact with me, I will not compromise on that.
2. Can give a warm caress, a tussle of the hair, even a hug, even though in general I am not the demonstrative type. This applies also (in private) to those teenage sons who blush at a quick hug.
3. Can be flexible. Rethink that request; give up my plans for the evening in order to watch a movie my teen brought home; trust him with something I was hesitant about.
4. Am civil. Even when denying something, do it nicely. He may still scream at you “I hate you!”, but he will see by the HOW if you hate or not.

And while you can say “I love you” it helps. But actions, and words, speak louder than words.

Gee, They Grow!!

My sixteen year old son recently bought himself a new suit. Then he got a haircut. I don’t know why this made such a difference, but suddenly he looked much older, and more mature. He suddenly appeared a bit like his older brothers. He doesn’t look like Rickis slightly older brother, but like a young man! Gee, He’s growing!

Mommy Does Do Something

I think that I finally have an answer to those family members who say I do nothing but sit on the computer / study with Ricki or prepare materials / volunteer for Down syndrome organizations.
I should have taken a video on my arrival home after four days at the Down syndrome conference. Despite my son having “done the dishes and the laundry” at least once, the house was a wreck. The bathroom needed disinfecting; the sink was full to overflowing with dishes. In addition, the table in the living room was piled high with assorted toys and games, crayons and scissors. And there were about 4 loads of dirty laundry waiting for my attention. (This is despite the fact that I had washed all of the family’s clothing down to the last sock before my departure.)
Thus, it stands to reason, that normally, in addition to preparing study materials for Ricki, I :
-Do all the things we hired people to do while I was at the conference.
-Do the things we forwent when I was gone (taking Ricki to private dance/ swimming classes)
-Do what family members did instead of me during my absence
-Do what usually gets done, and wasn’t done during my vacation.

Case rested.

Good versus bad

This is an approximate version. I am not sure I remember it word for word......

At the conference the other day, someone said something about children with Down syndrome having only a "good inclination", and not a "bad" one. (This is a sister statement to the "They are all so cute and loving.".)
Later that evening, a friend grinned at me (she also has an older child). "Does Ricki only have a good inclination?" (wink)
- "Yeah", I said, "she broke her glasses on purpose yesterday because of her good inclination...."

New parents , I have news for you. They are not always sweet. Kids with down syndrome, just like anyone else in the family, can be ornery, difficult, angry, not sweet, etc. THEY ARE PEOPLE.

Up late!

I will be posting sporadically if all all for the next few days.Its a way-too late hour to be posting, so I will leave you with this tiny tidbit:

When Ricki was small, she liked saying "No" to everything (pity she never grow out of that...LOL), and the word for "RED". We taped her saying "not red" when we prompted her "say 'red'". Till today an emphatic "not red" brings smiles and laughs to all in the family.

* * * * *
I take great pride that my 16 year old runs the washing machine like a pro! Having a busy mom is educational for “ siblings”…..

The Wedding Preparations

Ricki’s older sister recently got engaged. This is very extra special to me, as she is my only biological daughter who will, G-d willing, bear and raise her own children. [ While I don’t see Ricki marrying being impossible, I know that if she would ever have children, the social services would take them, and THAT would break her heart. So I can’t see Ricki RAISING her own children.] So this engaged daughter is the only one to whom I will ever be able to “pass on” my “job” of childrearing to.
Now mind you, she is very different from me. But now that she is engaged, both she and I are seeing more and more of the similarities that we share. And she, meantime, is running around , exhausting herself, arranging an “event” of a wedding (not exactly my style, but in many ways quite excellent)…

And I am beginning to teach Ricki wedding dances!

200!! ?? !

I am amazed, to discover that I have already written 200 blogs! And to my family, an apology that this blog is so Ricki- orientated. That is partly because she is what changes in my day. Also most of my non-family readers themselves have children with a disability.
Another reason is to protect the privacy of those quilty of wraking havoc in my world.

I hope you all enjoy the blog.

“I Want to Go in Myself”

Ricki had a dental appointment yesterday afternoon—a check-up. She acted up (a bit) on the way there, and on the way home. But at the dentist’s she was fine—even better than fine. She decided that she wanted to go into the examination room alone (“I’m a big girl already.”). I consented, with a thought of “let’s see if she actually GOES in alone”. I was also very pleased that the dentist understood, and readily agreed. (Of course, she gave me a verbal report afterwards.)
What is most amazing is that Ricki agreed to have the dentist swap her teeth with fluoride. Wanting to be big has a BIG effect and power. (Of course, that didn’t stop her from begging me for a drink all the way home, despite the dentist’s orders to the contrary.)

What an Evening!

I had a real hectic evening today. First of all, someone left the door of the deep freeze open this morning, just a pinch. But in the terrible heat wave we’ve been having, EVERYTHING in the deep freeze defrosted. So I have spent the evening cooking fish and chickens so that I can later refreeze them. And of course, just yesterday I had one of the boys jump over to the discount store and buy me a sizeable amount of (slightly less) expensive diet artics (ice cream bars). They are probably ruined beyond repair, but I will check after they are refrozen.
Ricki who has been clean for several years recently has started making a mess in her pants most afternoons. It is probably a behavior problem, and I have started a positive behavior plan for this, but tonight she not only made a mess, but made a mess of that!
The neighbors left their 12 year old babysitting, and he fell asleep. Then their toddler awoke and started screaming in the window. We had to force an entry, to calm the toddler.
Ricki also managed to tie some twenty NEW hair elastics onto her hose, and I had to pry them off one by one.

I was SUPPOSED to finish folding the laundry this evening, and to study a bit with Ricki. She wanted to study, being bored (at least when she wasn’t making a commotion), but the chickens had to take precedence.

An “Artic” (Popsicle) Refused

Yesterday evening, as a treat on our way home after dance, I purchased pizza for Ricki. This way she had an immediate supper, and I didn’t have to make it. (Of course, that didn’t stop her from making a fried egg for herself 4 hours later, when I wasn’t paying attention. (I would have told her to consider having a fruit instead….)
We sat down in the pizza store (I ordered salad plus a bit of pizza), and enjoyed “eating out” (which we do on the average of once a year or so.)
When we had finished I went to pay, and Ricki gravitated to the “artic” (popsicle) cooler. The owner chatted a bit with me, wishing me luck with Ricki, asking if we are locals, and the like. At this point Ricki swiftly pulled an artic out and begged for it. I said “No”, and she put it back. (Look at the progress we have made over the last several months!)
Then the owner piped up: I’ll give it to her as a treat!”
I swiftly vetoed the idea, both because of calories, and the “no gifts from strangers rule”. The fellow was really nice, and I faltered for a half-moment. But rules are rules. I explained to him why not, and thanked him for the nice thought. He proved that he was nice by not continuing to offer the artic after the explanation.

Ricki and the Lion in the Living Room- chapter 2

A few days later, Ricki’s two brothers (they are not orthodox) showed up to visit, bringing with them their small “pug” dog. As far as Ricki was concerned (at least at first), it could have been a lion in the living room. The most she would do was talk to the dog, or throw him a toy, from a safe DISTANCE.
Then another relative brought, the next day, a black kitten. As He entered, Ricki froze.

NO, she did not want to pet the cat.
NO, she did not want to feed the cat.
Period.
Enough said.
Her mind is made up.

Ricki and the Lion in the Living room- chapter 1

Perhaps it all started a few weeks ago, when Ricki and I were returning from a doctor’s appointment. There was a black cat near the bus stop. As far as Ricki was concerned, it could have been a tiger. She was scared. Period. A woman sitting there said what a shame that she doesn’t have an animal to take care of.
Now that may be true, but in general, orthodox families (at least in Israel) don’t keep pets. (When you have 6 or more kids, who needs an animal to keep you company?) By the time we had left the bus stop, Ricki had calmed down enough to wave at the cat from AFAR.

Sleeps in Your Bed?

Today I happened to see on an internet site (concerned with DS), posting by several mothers who let their young, and not-so-young children with DS sleep with them at night. In general I do not think that this is a good idea, and here is why:
I have a friend who started like so many of these moms with their kids in her bed, and now at 20+ her daughter is still there! It got a "bit" crowded in the meantime, but if you think that little kids with DS can be stubborn, wait till you have a teen! At the age you would kick any "normal" child out of the bed, the kid with DS should go too.
Besides the inconvenience that an older child can pose if you are married , I suspect that at a certain point it is good for the child's normal perception of "self" to see themselves as grownup enough to sleep on their own. Also they should know that they are not going to take Daddy’s place, whether Daddy works at night or not.

Tools to help the child move:
-relaxing music in the room
-give them a flashlight (t6hey have control over it) to chase all the monsters away with....

French Toast

Ricki has matter-of-factly made breakfast for herself two days in a row. Yesterday she made French toast, and today a fried egg. I am happy that I have taught her, slowly, the skills needed to do this, including lighting the stove. I knew very clearly that if I did not teach her, she would surely do it one day on her own, WITHOUT the taught skills. Its definitely safer being taught FIRST.

My Brother the Inquisitor

I am sure that this last afternoon, Ricki viewed her brother as something akin to an integrator. I was taking an afternoon nap, and he suddenly noticed that she was not at home. He called out her name, and she came in the front door.
Now how well does your average 16 year-old get along with a 13 year old sister? They LOVE to pick on them. And the fact that she has Down syndrome makes no difference. So he starts interrogating her. “Where were you? WHERE?”
And what is your average kid (if there is such a thing) with Down syndrome do when questioned in a threatening voice? Ricki shrugged, “I dunno…”
At this point I intervened, calmly ascertaining that Ricki had only exited the front door as part of a make-believe game. I diplomatically abstained from telling her brother off. I figured he had already realized that yelling was a mistake, and I didn’t have anything to gain by mentioning it.

Gifts

Ricki showed me some loose small change that she has, and told me that she already has a lot of money. Considering that the money is mostly 10 agorot pieces (each worth about 3 cents), she has saved up a remarkable sum.
-“What do you want to do with it”, I quizzed her.
-“Buy gifts.”
-“So what would you buy?”
-“For you, something big. A puzzle….. No, a newspaper. “ (And she named a magazine I often buy. “For Moshe,” (her nephew) “I want to buy a book.” And for her nieces plastic baby dishes, and a pacifier for her youngest niece.

She was very excited about the idea. Maybe I’ll even help her carry the plan out. It is so nice to see her thinking about someone else. And best is that she had thought of appropriate things for each of us.

“Terrorist”???????

MSNBC has an article on the Terrorist” who went on rampage in Jerusalem. May I ask why the word “Terrorist” is in quotation marks?

The “Opposite” Vacation

Most moms really don’t like school break, at least after a few weeks of vacation has passed. They enjoy doing things with their children that there is no time for during the year… but the noise, the “Mommy, I’m bored..” gets a bit nerve wracking after a while. And the mess… constantly you have to remind your teens that the place for trash is in the garbage can, and not everywhere else. So most Moms breathe a big relaxing sigh of relief when school restarts in September.
But by me it’s the opposite. The entire scholastic year I have spent preparing and adapting materials for Ricki’s studies, often to un-G-dly (G-d would not approve how I am wrecking my health) hours of the night
Now that summer is here, I will cut down on studies, and those I do with Ricki can be done with materials I have, not stuff that needs to be adapted from the regular curriculum. (YAY!!) I hope to spend a bit of time each day with Ricki reviewing reading and math, and most of the remaining time use for crafts, sports, and fun. I want to make cooking and other independent learning skills a priority. But my biggest priority is to make this all fun, for Ricki at least. It means that I will be busy, but, frankly, less than during the year, and without pressure.
Probably by the middle of the summer, when Ricki will be finished with her morning day-camp, I will be singing a different tune…. and yet, it is hard to envision the school year being less stressful. But I will probably also look forward to it, joining with Ricki in her pleasure of being in the eldest class of the school.

Food Addiction

For people who are overweight, food can be an addictive drug in every sense of the word “addictive”. Let’s look point by point:
1. One who is addicted to overeating (whether it is cakes, chocolate, or whatever) will overeat even though they are fully cognitive of the fact that this extra food is unhealthy for them.
2. In addition, they will overeat despite the fact that the food makes problems for them in the interpersonal sphere of their lives (family, jobs, etc.)
3. They have physical withdrawal symptoms if they stop overeating. And I am not talking about “empty tummy” rumbles, but headaches, weakness, etc.
4. They will lie to others (and themselves) regarding the amount that they eat. This may not be verbal, but a habit of overeating AFTER returning from a wedding (THERE they did not TOUCH the buffet…)
5. The overeating satisfies some emotional need, is a calming tool, etc. Or it gives the sleep-deprived a spurt of energy.


I saw this all so clearly today. I am now finally in the less pressured time of summer vacation (yes, less pressured. More on that tomorrow, hopefully….)

A perfect time to get back on my diet
. I dealt pretty well with the splitting headache that cropped up this morning. Today number5 threw me. I was upset with someone….I tried relaxation techniques, to no avail. Finally I had a small piece of cake. The tension went. The headache lessened. Now I am only left with the quilt, and the determination to try and find an alternative. I’ve already started to get more sleep (sleep deprivation being my major overeating trigger). For tension I will need other tools. Perhaps music?

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.

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.

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!

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.

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!

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.

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:

“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.

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.

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.

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.)

Not AWOL

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!

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 ( http://www.davehingsburger.blogspot.com/ ) (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)!

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).

PS

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………

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.]

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?!?!?!!!

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.

Instructions

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.

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……

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.

PURPLE HAIR

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…….

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.

??!!??????!!!

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.

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.