The Last Day of Vacation

Years ago the first day of school was my dream. (Keep in mind that most of my offspring are masculine. ..argumentative, principled, opinionated masculine….) The first day of school was the bliss of a cup of coffee drunk in the quiet solitude of the living room, sitting in an armchair and gazing out the window. The job of referee, of peace-keeper, of maid and short-order cook had been shelved for a while.

Today I no longer feel this way. Due to the fact that I am Ricki’s schoolwork adaptor (for 80% of her classes), and much more, the school year ahead will be a busy one. This week alone I will have to talk to new teachers, explaining what (and how) we are doing, arrange her schedule, and much much more.
But that’s not the real reason I am sorry that the vacation ended. I dreamt of doing so many fun things with Ricki this summer. I wanted to bake, cook, do crafts, go to the beach, and much more. However, because I had set her up in several summer programs, and for various other reasons (including classmates who took her out a lot), we had few opportunities to share the activities that I had hoped to do with her. Of course, the bottom line is that she enjoyed the summer, and had a break.

At least one good thing. September is starting, and that means that summer and its heat should be ending soon. Now THAT I’ll celebrate! (Last week the temperature was about 90 degrees Fahrenheit, with about 80% relative humidity……)

Ricki and the too-big book

The other day, when I took Ricki to the eye doctor, I suggested that she take a book from home to read. Of course she didn’t want the one I suggested, but rather a VERY BIG one that wouldn’t fit into her small backpack. I warned her that she would have to carry it.
On the way home, the usual happened… she started shoving the book over to me. I decided that this time she is going to learn a lesson, even if it means the loss of the book. So I returned the book to her. She threw it back to me. I put it on the window of the bus we were on… she returned the book to me. Just then a friend of mine who also has a child with Down syndrome* entered the bus. She quickly sized up the situation. Smiling, I handed her the book.
Suddenly Ricki piped up: “That’s ours!”
-“So than YOU carry it!”
And she did. (We’ll see if it has any carry-over effect to next time.)

*that’s how we met…

The Tale of Woe

As I mentioned on Tuesday, when we were at the eye doctor’s, his secretary had instilled eye drops in Ricki’s eyes. Then she recommended that we walk around “downstairs” for half-an-hour, while they took effect.
Due to the heat wave we have been having, “outside” was not an option (and anyway the sun is not good for dilating eyes). So we went into the nearby (very air conditioned) shopping mall. I stopped to look at some toys that might be nice for my grandkids, and Ricki simply disappeared. So I started searching for her, trying to curb a wave of panic. I went further down the center aisle, peaking in the store windows, and soon reached a “hub”. One quick glance showed me that I had three floors, and four directions in which I could search.

-How long would it take until Ricki realized that she was lost?
-Would she remember what I have taught her about telling salesladies if she gets lost?
-If I search further, will she come out of a store behind me, go back to the place I had stopped? And then perhaps she would try and look for me in the 25-story office building we had come from?

I paused. What was she most likely to go for? Answer: food. I spotted a candy store just ahead… and yes, she was there.
No, I did not buy her candy. (I asked the store owner if he doesn’t get harried parents dealing with toddlers grabbing sweets, and yes he does….)
I purchased her a drink (decided was better to give in on that to start with, and not argue without end…), gave her a piece of my mind, and headed back upstairs. We made it back, amazingly, on time.

Now I am thinking that I have to sit down with her today, and calmly explain my fears, the dangers, and the to-be-expected consequences of any repeats to this “activity”.

A Sad Story- All Israel is Sick Over This

Doesn't she look like too cute of a four-year old to die?
Well, die she did-murdered by her own relatives.By her grandfather, aparently who is her step-father as well (sick people do a lot of sick things....). And aparently the mother knew or suspected, if not more. And her father also didn't want her.
Why? She didn't speak well, she made in her pants, she was hard to handle. She had some "special needs" that no one took the pains to work on. No speach therapy, no treatment. No one wanted her. Just neglect,abuse... and death.
Her parents could have given her up for adoption. They could have asked for foster care. But they didn't care at all. So a cute kid, who probably could have been OK if someone had cared, was abused and murdered.
Torah says that G-d made man in the image of G-d. Gosh, it's awfully hard to see that image sometimes.
What message do we take from this? Those of us who are in the position to advise, give aid and support, to families of kids with disabilities, need to know that we can save lives.We can make lives abuse-free. We have to help parents come to terms with problems, cope with them, and get help. These things do not have to happen.

Cheers for Ricki!!!

Ricki really deserves cheers today! Today we went to get her blood tests done. She needs a blood count done before her eye operation, and we rushed to do it this week, so that we would avoid her losing school time for the blood work. (Here school starts only next week.)
So why does Ricki deserve cheers? (And I mean CHEERS!) A bit of history:
Ricki is no dummy, and her memory is quite good. Especially in things that relate to her…. And she has a super-duper memory regarding things that she does not like. Number one on that list is blood tests. Having been the frequent pin cushion for various needles, Ricki developed over the years a sincere dislike for blood tests. “Sincere dislike” translates into absolute refusal to cooperate, even with distractions, explanations in advance, and promises of prizes. Four years ago we had to hold her down physically by force for an urgent test. The two tests since then were better. Both times she was prepared in advance, promised prizes, and we used distraction as well. Nevertheless, she still needed to have her arm held rather forcibly by a second technician. Even though she had promised to cooperate, the second that she saw the needle, she panicked.
So this morning when I mentioned that she had to go for blood tests, she turned to me and said: “I am a big girl. I can do it…..Will it hurt?” She even said that she would go in alone, similar to when we went to the dentist last time. (See post for July 10th). When we arrived at the lab, she indicated that she yes wanted me to join her. And a second technician held her arm, as a precaution.
Ricki was fantastic. She didn’t fight the test. She was marvelous….she was magnificent. She acted like a grown-up.
Later, we went into a store to buy her a drink. There she figured out which coin to use for the purchase, and the change due us. People there where so surprised. “Oh, you’re fantastic”, they said to me. (You know what I mean, that tone of voice used when passersby want to confer sainthood on you for being the mom of a child with special needs.) And I thought to myself… no, this morning, RICKI deserves that title!

* * * * * * * *
And here is a photo for “Special exposure Wednesday!


Here Ricki is almost ready for Shabbas (Saturday), just needs to brush her hair still. (She thinks it’s brushed; she’ll have to try again. You can see here a bit of the cross-eye. Sometimes it is worse.

Try this Tuesday- Timer and Homework

I have found the timer useful in doing homework. On one side, Ricki wanted, as a teen, more independence. Sitting beside her only led to her turning her back and trying to hide her work. But since she is included, she does need help at times with her homework. So I now explain a task, set the timer for 5 minutes, telling her that she should work alone for 5 minutes. Then I go and do some housework in a different room, and when the timer rings, I come to check her work, give help if needed, etc.. This way I get more done during the day, and she works more independently.
Obviously, positive reinforcement for effort and good work can be added in.

Also, it is important, VERY important, to praise the child’s efforts to work independently. On returning to check the work, avoid critical comments about the results. Any corrections that need to be made should be sandwhiched between positive points. For example:
“Ricki, I can see that you sat for the full five minutes and worked very hard. You wrote in the line. Very nice! By the way, “their” is spelled “ei”. I’ll write that here on this note, and you can copy from there. I see that you crossed your t’s very nicely.”

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.