On Doctors , Appointments, and Being on Time

Several months ago, I wrote a piece about the need for doctors and therapists not to over schedule…IE to receive their clients reasonably close to the appointment’s set hour. (See post of December 17th, 2007)
Today I saw the other side.

This afternoon I had an appointment for Ricki at a top eye doctor, for 4:50 pm, for examination and evaluation of cross-eye. On the way there, on the bus, the lady sitting across from us was very personable… and, as it turned out, was going to the same doctor we were! This was a G-d-send for me, as I had never been to this doctor before, and she had. As we exited the bus, I said how happy I was that she was with me, as her knowing the way would help me reach the 4:50 appointment on time. She laughed, and said that her appointment was for 3:45.
We arrived to a packed waiting room. When the doctor next exited his private sanctum, he queried: “Is Mrs. X here yet?” The lady from the bus waved, announcing her presence. He then commented: “OK, everyone, you can set your watches, it is now 3:45!” Everyone looked very puzzled. Only two in the room understood: the lady in question, and me. Apparently hers had been the first appointment, and he had lost valuable time.
Actually, I do not condone the behavior of either. Theoretically, he should have told her in private. And she certainly should have been on time. (I of course do not know—she may have had a very pressing reason for her lateness. But she hadn’t seemed perturbed, which is why I suspect that she had not made any effort to arrive promptly.)
I’ll say this, though. The doctor’s office ran smooth as butter. We were in to see him within 30 minutes of arrival. He examined her, put in eye drops, and his secretary recommended that we take a walk for half an hour in the mall downstairs. (What went on in the mall is a tale of woe, but it will have to wait…)
And the final note: Ricki will need surgery for her crossed eyes.

An Interesting Shabbas

[Introductory note: Shabbas (Saturday) is NOT a boring day. Although one can not watch TV or computer, knit, sew, or drive anywhere….It is far from boring. Exactly because it is a day that you can not use to catch up on housework or finish the report for your boss, it is a day that one can connect with family. I also read a lot. However, for my son Yitzchak, Ricki’s brother who is still at home (him being 2 years her senior), shabbas has been a bit boring lately. He does not enjoy reading (I have yet to figure out how the “reading genes” in our family didn’t kick in here…..). Yitzchak’s two older brothers (ages 18 and 20) are currently rooming together in a rented apartment. This has sort of left Yitzchak in a lurch, as he used to always do things with them on Saturday: walking, playing games, talking… With this introduction, you will understand my post much better.]
My oldest son, Yaacov, was here with his family for shabbas. He and his wife have a large family of four children: three boys (ages 7-3) and a daughter (age one and a half).
The daughter is finally walking, and so very different from her brothers. A female. Her mom said that she thought that much of the “girl” things that girls do are taught by culture. She expected her daughter, surrounded with boisterous siblings, to enjoy cars and ball. Yet she sees that her daughter has a much more gentle nature than her brothers. She strokes a doll that she picks up. She preens in front of a mirror. She is simply different.
I got out some speech cards for working on pragmatics, and played with Ricki and her oldest nephew. They enjoyed the funny pictures, and had a lot of fun. Ricki also had the pleasure of taking her niece out for a walk. A real treat for her.
Meanwhile, my second grandson was zooming around our house on a kick scooter. Our house is long and thin, an ideal set-up for accelerating vehicles.
I remember sometimes being bored at my grandparent’s house as a child. There really wasn’t much to do besides listen to adult conversation. But this grandmother, loaded with toys purchased over the years to use with Ricki, has a home that is far from boring. Yet my three-year-old grandson, living in an apartment with no windows facing the street, was more enthralled by the view of the street from our front window.
And my son Yitzchak had the best shabbas that he has had in a long time. His oldest nephew is one smart little kid, and Yitzchak enjoyed playing games with him. He also enjoyed holding his niece!

Color Me Bleary-Eyed

One of the occupational hazards of not getting enough sleep during the week is that you oversleep on Shabbas (Saturday), and then on Saturday night it is SO easy to stay up terribly late. I confess to being a chronic offender.
So this morning (it’s still vacation here) I was less than thrilled when my neighbor’s phone rang… and rang… and rang…. For four long stretches between 7:00 am to 7:20. But I was tired enough to fall asleep again until 8:15, which is about the time I had planned to get up. Ricki, notably, is very good about not waking me if she sees that I am asleep.

Final Comment on Camp

The summation of Ricki’s camp experience was that she had a blast. She had a real, well-deserved vacation. And while there were a few points that upset me, that I thought could have been done differently, I have decided that the benefit to Ricki far outweighed any bad points.

The “Secrets” Corner

On of the better school-book publishers in Israel has put out some new workbooks for the “intellectually impaired”, for “high school” age. They looked interesting, and since I am always looking for things to use with Ricki, I ordered them. There were 5 booklets, three on social studies, and two about language skills. The day before yesterday the order finally arrived, so I spent that afternoon reading them and evaluating their usefulness. [Reading in Hebrew still takes me time, so it was an all-afternoon project.]
The three on social studies are basically on:
-taking responsibility, being part of a community
-rules, laws, legislature
-occupations… why people work, duties, and rights
The two on language were on various language skills, gathering information, emotions, and making choices.
In general, they are well done, and my money was well-spent. The language skills which are targeted are ones she has learned already, which shows, again, the low expectations here for special ed. “High school” level special ed is about what was Ricki’s sixth-grade level. But these booklets will be a good review, and they appear to be fun to work with. But one thing really bothered me.
In one language book, there is a collection of seven poems on emotions. (One of these Ricki studied in fourth grade.) One of the selections is a poem on “secrets in my heart”, i.e., things we feel but are afraid or embarrassed to say. On the bottom of one page is a colored corner that can be folded up. There are instructions to “write a secret of yours in the corner, and if you fold the flap up, it will remain a secret”.

REALLY??
GIMME A BREAK!

First, the allotted space is WAY too small for most students with intellectual disabilities to write in. Secondly, who is guaranteeing that this secret won’t be revealed? That the teacher, grading the booklet, won’t peak? Nor the parents? And not the classmates, sisters, and brothers? What about the right of people to keep their secrets?
So I fired off an angry email yesterday to the publisher. And I suggested that much better than asking students to reveal their secrets would be to promote a class discussion on “good” and “bad” secrets, and why it is important to reveal “bad” ones.
For such a good company to make this “corner” mistake is simply disappointing. I am afraid that it is symptomatic of the basic warped view of the intellectually-impaired that is so prevalent in this country.

The Old Lady on the Stairs

Yesterday I was at the “health fund” building. [Side-note: In Israel there is basically mandatory health care - socialized medicine- through various health funds. You join one fund, and through them you get doctors, nurses, and reimbursement for various medical procedures. This has its good side-- if you belong to a fund and give birth to a special-needs child, they have to accept him—but sometimes to get top-notch care you have to go private.]
So as I wrote above, I was in the health-fund building. I had gone to their office to receive reimbursement for a medical-supplies expenditure. On the way down the stairs, I noted two people in front of me. One was an elderly lady, navigating the stairs rather slowly, purse in hand. Behind her was a middle-aged woman. The middle-aged woman took a few steps forward, and grasped the arm of the older woman. “Here, let me help you.”
- “No thanks” responded the elderly woman.
- “At least let me take your bag for you.” Insisted the younger woman.

[I would note here that there was a working elevator that could have been used by anyone so desiring….]
Watching this lady who had forcibly invaded the body space of her neighbor on the stairs reminded me vividly about Dave Hingsburger’s numerous posts about hating it when people touched him, his chair, etc. (I doubt that I would have given this too much thought a year ago.) So I piped up:
-“Madam, I think that you should allow her to descend on her own, since that’s what she prefers.”
The old lady looked back at me, in surprise, and smiled. I almost winked back. Instead, I just smiled.
* * * * * * *
Ricki returns from camp late this evening. Tonight there is a “farewell party”, which I will have to waste my time on. But I will probably write about all this only on Sunday, as I have a different post lined up for tomorrow. (And saturday is my day of rest...)

On Worry and Death… and LIFE

My son D has decided he will not try and get any deferments from the army. And, actually, this is understandable… after all, he is NOT studying. So sometime this winter he should be drafted. But of course, just the idea makes me worry. (While I suspect he will be used as a driver, and not as a “warrior”, any job in the armed forces carries an element of risk.)

When I teach birthing classes, sometimes I have to talk about scary subjects: cesareans, forceps, fetal distress. The pregnant women tend to look rather apprehensive at these junctures. I warn them about this in our first session:
“I’d rather have you look green here, than have you sit here calmly and later, in birth panic if an emergency arises and you have no information to draw on.” Then I continue: “You know, you already are concerned about that baby. That’s part of being a mother. And you will worry about him until the day you die. You’ll have to send him on class trips, despite your fears…because you want him to participate. You will have to let them grow, be independent…despite your anxiety. That is part of this journey that you are embarking on.”

In actuality, we lie daily to our psyche: Even though we are often apprehensive about our offspring, we assume, barring special circumstances, that we are safe. We imagine living forever. In actuality there are no assurances. There are a lot of ways to die in this world. When my kids get scared about something (like bombs on buses, will Iran throw a bomb on Israel, etc.) I always say something like this:
“We don’t know how and when we will die. We can only choose how to live.”

Of course, worry does have it’s good side: fastening seatbelts, starting a diet. But other than that, we have to redirect our thoughts, and work on living the best we can.
(Now I’ll get off my soap box.)

Try this Tuesday

I just wanted to add the following footnote to Trish's idea.
A digital camera is my best friend!(Besides word check spelling.)
Any activity that Ricki does, any outing, any family gathering, gets photographed. Than I can instantly use those pics for :
--Reading (make a booklet, story)
--a writing -sentences prompt
--speech work

I actually once wrote an article on this in Down synrome News and Update (Down's ED) (this article is best for the learning-to-read stage), which can be viewed online here:
http://www.down-syndrome.org/practice/238/

THIS ARTICLE HAS LOTS OF IDEAS

“Kol Tuv”

Yesterday, it seems, Ricki finally got homesick. She called up (via her volunteer’s cell phone) to say that she missed me. But she agreed that she was also having a great time. But, after all, she OUGHT to miss me after 6 days!
And if you ask what I have been doing with her gone, I will answer “Wasting way too much time.” But one thing I did do was re-view a video on speech problems in children with Down syndrome. In the section on pragmatics, they mentioned that we all use set “scripts” when doing certain things, like closing a phone conversation. And these can be learned. My “script” for finishing phone conversations is “Kol Tuv” (“Be well”).
Now if I hadn’t heard that video yesterday, I’m not sure I would have noticed Ricki’s sign off: “Kol Tuv”. That’s my girl!

Raining Paint, Fisher Price, and Silver Dishes

One of my daughters-in-law was complaining to me the other day. It seems that an upstairs neighbor’s child had spilled paint from their open porch to hers, below. This is of course an occupational hazard of living in multi-storied child-friendly buildings. Naturally, she went to complain. Eventually the upstairs mom sent her son down to clean up.
Now when my kids were small, I put a plastic mesh over our front window-bars, just to prevent this type of thing. After all, we are on the third floor, and even a small item thrown out to the sidewalk below could be lethal (literally!) if it would hit someone. In addition, a three floors drop usually does not bode well for the toy, either, unless it is raggedy Ann. Even a sturdy Fisher-Price “record player” expired after being tossed down the three floors height of the stairwell. (That incident was followed by our putting up mesh on the stairway rail as well.)
Of course, mesh is only partially effective. I remember the irate countenance of my downstairs neighbor as she protested the spilling of an entire bottle of wine on her newly-cleaned window tressim (blinds). I went to investigate (this was years ago), and found the four-year-old culprit in the act. (Where, where, oh WHERE do they get these ideas from????). Said culprit being too young to wipe up properly, I had to go down and do the cleansing.
Since we removed the mesh in the living room, only one item has been tossed out. One day, inexplicitly, when she was about ten, Ricki tossed out a silver dish (which we had received from Ricki’s married siblings). At least it didn’t hit anyone. The thing is, we didn’t notice its disappearance at once, and when we did, half of the 2-part dish was gone The half that some lucky finder found was useful in its own right, but the part left is not. So I added this to my list of “things to tell the investigator” if they ever want to lower Ricki’s percentage of “Disability payment” to less than the present amount. What else could I do?

Language and Discrimination

The “Tropic Thunder” debate rages on. I hope that this will be my final post on this.

I was in nursing school when the word "mongoloid" was still used freely for Down's syndrome, and it was used as a slur as well. Eventually they used other phrases. But ANY word which is used for the mentally disabled, whether it is "Mongoloid", "Moron", "imbecile", or "retard", or (now) "full retard" WILL eventually be used to hurt and slander people. Because people feel that the intellectually challenged* are worth less. They cost money. The intellectually disabled* community is discriminated against to the point that most fetuses with Down syndrome are aborted.
Boycotting "Tropic Thunder" will not change that. As long as people hate, there will be improper use of language, taunts, and slurs.
Telling people to not see the movie will not help. Those who are insensitive would not listen anyway. I think that a NEGATIVE approach will not get us very far.
I think that our main thrust has to be at PROMOTING rights and respect for the disabled. We have to support the closure of large institutions where the "clients" are treated as numbers, not people. (If an institution is so big that they don’t have a say in what they eat for breakfast, they have lost their rights to be an INDIDUAL.) We have to encourage and support places that hire the intellectually disabled. We have to protest when someone calls a teen with Down syndrome a nick-name fit for a three year old. We have to encourage our child’s right to make certain choices.
However, I do feel the Ben Stiller owes a debt to the disabled community for three things:
1. marketing specially the sub movie "simple Jack"
2& 3. Two disturbing scenes involving Mcconaughey, where he is obviously unhappy with his intellectually impaired* son. This was too similar to the way the “regular”world views parents of children with Down syndrome. It is definitely reinforcing a stereotype that is as false as can be.

For these three things, I personally would tell Mr. Stiller, that the only way he can hope to make recompense would be by paying for public service announcements favoring those with intellectual disabilities*.

I would like to see (much more than protests) many more videos like the one I put on my blog on Wednesday.
And, in the meantime, we must train our children to have self respect, and to know how to react as safely as possible in the face of discrimination and abuse.

* Can’t we find a SHORTER euphemism than “Intellectually impaired/disabled/challenged”???

[Note: Please see added comments.]

Was it Worth It?

You know, when I registered Ricki for camp, I didn’t realize what I was getting myself into. I understand that I would have to go to city hall to get them to pay for the camp (as “respite” care). I understood that I would need to label and pack her things. My only qualms were:
1. She would miss 10 days wherein we could work on life skills.
2. I was (and am) afraid that she might be treated in a babyish, condescending way by the volunteers, or that they would condone behavior that I don’t.

As it happens, getting ready for camp involved a lot more work than I had imagined. She really didn’t have enough clothing for 10 days, so we bought more. Then those clothes had to be altered to fit, and labeled. So in all, we have lost much more than 10 days of working on life skills. It was a lot of work. And when she returns I dread the amount of laundry I will have to do. (Right now, I’m puzzled every time that I venture out to the laundry room and see that there is not enough laundry to make a machine-load. Ricki generates a LOT of laundry, especially as she is careful to change clothing –usually- when they get smudged up.)
So was it worth it? I think so. Ricki is apparently having a BLAST. She is not calling home in homesickness, either. Friday afternoon when I called, I asked what she was doing. She answered, after a giggle, “Getting a fancy hairdo….” She’s gaining independence, and at the same time getting a real vacation before the tough new school year starts in two weeks. And I suspect she just might get a lot of REAL life skills right there in camp!

The Collector's Paradise

My husband has discovered the perfect gift for our 16 year-old son: paper money. Now, before you envision Ricki’s brother as filling a piggybank, let me explain. We are talking about bills from all over the world, including some older ones. There’s one from eastern Europe commemorating a solar eclipse, a bill from the Weimar Republic (nearly a hundred years old, etc. Out comes the encyclopedia, the atlas, as he gains a bit of knowledge. Then he puts them away in a display book (one bill per page).
In the picture shown here is a picture from Iraq, and above it, the bill from the Weimar republic.
Another one of my sons collected phone cards for years. [Here in Israel, public phones are operated with a card, not cash. (Saves the phone from being damaged by thieves.) ] These cards come out in a tremendous variety of designs, and are very interesting to collect. They even produce them in a variety of languages, as befits such a widely-varied-populace.
In addition, Israel is a stamp collector’s paradise. People immigrated to Israel from all over the world, and receive letters from “back home”. This means that often, without too much effort, one can get stamps from all over the place. For example, in our 6-apartment-sized building, letters arrive from the USA, England, Brazil, and Mexico on a regular basis, as well as occasionally from other assorted locations. In addition, Israel has a nice collection of stamps itself. And, incidentally, several years ago there were 3 stamps printed for “holidays” which were drawn by a young man with Down syndrome.

Tropic Thunder- Finally, an Opinion

I have not until now directly addressed "Tropic Thunder", because I do believe that we must be careful with the word "ban" (living in a country that once banned the book Perfidy, it is easy to imagine "bans" being overdone as well.) However, I did have a LOT of problems with the language, and how they apparently never even DREAMED (Dreamworks....) that the intellectually disabled have a voice.
Anyway, me frequent commenter, and fellow blogger, FAB, has written a blog/letter that expresses a view which I share. Please "copy and paste in browser" and go have a look.

http://fab-searchformeaning.blogspot.com/2008/08/stealing-page-from-mr-hingsburger.html

(But don't miss my first blog for today, below.)

Ricki in Camp- and the Home Front

Well, according to Ricki’s volunteer, she is having a good time (and behaving herself as well). Yesterday I talked to the volunteer twice, but missed Ricki both times. She didn’t even call to say “good night”, which surprised me. This morning I called and chatted with Ricki for a few moments. She sounded ecstatic (they were going to sing and dance, her favorite pastime. When she answered the phone she said in a real teenager-y voice (real suave) “Hello Mom! What’s up?”
The most amazing thing about Ricki being absent is that my day has become totally flexible. Very few things remain in the category of “Must be done by ___o’clock”. It’s a vacation within a vacation (school break). I can work several hours straight on a project, papers strewn about, and there is no need to stop in the middle, or to prevent Ricki from scattering things. Anyone who knows me knows that I can really get immersed in things, to the point that I reply to someone without really hearing them. Now I don’t even have Ricki around to make me surface from under the “waters” for some air!
The one who is enjoying Ricki’s camp the most is her brother two years her senior. He is the one who often has to help around the house in the wake of her shenanigans….and he doesn’t mind not having to share the computer with her either. (Sharing with me is bad enough!)
And of course I do miss her a bit. But not too badly. That’s because I’m imagining her relishing being a bit more independent.

Hi Ho, Hi Ho, It’s Off to Camp She Goes

Yesterday afternoon I saw Ricki off to camp. She could have been singing (to the tune of Snow White) “Hi Ho, Hi Ho, it’s off to camp I go…”, she was so excited. The entire summer she has been looking forward to this camp, which entails 9 whole days away from home. It’s her first time at an overnight camp. She has been away from the house overnight on occasion, although it was always by a married sibling. We purposely sent her, so that she would/could tolerate overnights out of the house if the need would ever arise. It is also the longest I will be separated from her since she was born. The longest I have ever been away from her was for 4 days of my vacations.
Despite Ricki’s exuberance at going, I had qualms if she would actually hold up when actually at camp. So far she is doing OK. Of course, she had access to her volunteer’s cell phone for a quick “Good Night”, but apparently she did OK last night. (Gee, WE had to "rough it out" in camp without an umbilical cord of a cellphone......)
And here it is quiet, calm…. We’ll see who gets “ homesick” for the other first, she or I.

PS. On the topic of Snow White: Greg Palmer, in his book Adventures in the Mainstream makes a very interesting evaluation of Snow White and the seven dwarves. (I know that sounds weird, but see below, and you’ll se that it is not so strange.) His book is published by Woodbine House, but is already out of print, unfortunately. This book is very worth getting on an inter-library loan, even if you don’t have a child with special needs. It is a very fascinating look at two years in the life of his son, who has Down syndrome. I promise you, it’s interesting.
On Mr. Palmer’s web site ( http://www.gregpalmer.com/ ) I found that he has noted this about the alternate version (of Snow White) that he has authored:

“SNOW WHITE was written in response to extreme dissatisfaction with the Disney version, which reinforces the idea with young people that what you look like is very important - it is, after all, why the Dwarfs save Snow White, why they don’t bury her, why she eventually defeats the Queen; because she is indeed the fairest in the land. And then, after the Dwarfs have taken such care of her, she rides off with the first handsome prince who comes along, even though she has never exchanged a single spoken word with him. There is also the Dopey problem; the Disney character being an obvious developmentally disabled adult who is continually abused physically and verbally by his "loving" brothers. My Snow White makes an intelligent decision about who she loves, and why (it’s the Grumpy equivalent) and the youngest Dwarf is named Peg. She is a developmentally disabled adult as well, but is treated by her siblings with love and respect.”

PS on the "Stop the R-word" Campaign

While not everyone may agree on a boycott of "tropic thunder" (I wouldn't want to see it anyway....), I think that anyone can agree on the need to stop using the word "retard" outside of its medical usage. The following clip, from Arc of Virginia and the Arc of Northern Virginia, plus Blueberry Shoes Productions is very nice. Enjoy!

Choices- the Fried Egg

While Ricki can fry her own egg, sometimes, like the rest of us, she enjoys being catered to. The other day I saw that someone was in the kitchen, and asked them to make Ricki an egg for breakfast. Ricki yelled out from the living room:” I want a scrambled egg.” The person frying the egg said: “I’ll cook you a sunny-side up egg.”
“NO”. Ricki replied, “It will (drip and) mess up my blouse.”

Well, this family member made her a sunny-side up egg, and was puzzled when Ricki got angry and refused to eat the egg. I stepped in, and broke the yolk, mixed it with the white, and cooked it a speck more. This satisfied Ricki. Then I turned to the disconcerted family member.

Didn’t you hear her?
Can’t she chose the type of egg she wants?

I am very glad that Ricki did not accept the abjuration of her rights quietly.

Tropic Thunder

Until now, I have stayed off this topic, not having seen (and not planning to see) the trash that hollywood calls movies today. But I saw the following blog, which I think is well worth reading.:

http://aut.zone38.net/2008/08/06/stumble-in-the-jungle/

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?