"By Now, You are Beyond Caring What Others Think, Aren't You?"

I was talking to a friend about our family news. Some was about some of my sons, who are not "religious", as is standard in our neighborhood.
"But you are beyond caring what others will think, aren't you?"
And, I had to admit, that I pretty much am, at least as regards my sons and my husband. But when my own short-failings come into view (ie., about my overweight), it is a different matter.
Take the other day. It was about noon and I was out running errands. I was hot, and made my way over to a small drinks vender, intending to buy as diet coke. Then I noticed that they had diet (39 calorie) ice cream bars. I bought it. But as I unwrapped it, I planned to hold the paper wrapping in my hand until I finished. Thus, MAYBE, passersby would notice that it was dietetic. Imagine if you see someone extremely overweight eating an ice cream bar, Most people would assume that they just don't care, are not trying, are irresponsible, etc. I don't want to be judged like that.
Then I grinned and threw the paper in the trash.
"You swollen-head egotist" I berated myself, "Do you really think that ANYONE passing by gives a HOOT about what you are eating, and thinks about it?!??? You are so self-conceited; you are lucky that THAT isn't as visible as the fat!"

The Missed Swimming Lesson

Thursday Ricki was supposed to have a swimming lesson. I went to her afternoon activity center to take her to the pool which is only a few minutes away from there. As we were walking, Ricki suddenly complained of a headache. I felt her forehead; she didn't have a temperature. I asked her if maybe she didn't want to go to her lesson. Her reply was to look at me with a hand motion "Are you crazy….?".
Now this type of situation is always troublesome. Is she coming down with something, or is she complaining very vocally, as she often does, over a very minor discomfort?
We arrived at the pool, and Ricki got dressed in her swimsuit. The teacher was running about fifteen minutes late, and Ricki actually waited patiently.
Finally it was her turn to enter the pool, but within moments she exited, complaining that she didn't feel well. So we came home by taxi, and after getting medicine (as she was already getting a temperature) and a glass of warm tea, it was off to bed with her.

PS By saturday evening she was fine!

"Nita" makes Her Own Breakfast

Sometimes Ricki is a real study in contrasts. "Intelligent", "spunky", "exasperating", and "how-in-the-world-could-she-do-something-so-stupid" are all wrapped up in the package called "Ricki" . Let me give you some examples.
Last Thursday I was with Ricki at the optometrist, and when the lady attending to us asked Ricki her name, she answered "Nita". Now I knew that the name comes from a film she once saw, but the lady obediently wrote down "Nita". I looked askance at Ricki, and told the lady to write "Ricki", afraid that they would not identify the eyeglasses as ours at their arrival. "Nita" protested hotly. And as we arrived to the corner by our house, I saw Ricki VERY discretely wave a "hello" to her imaginary friends, who were apparently waiting with baited breath for her arrival.
But the next morning, Ricki got dressed on her own, defrosted a pita bread in the microwave, prepared that with catsup and put it in the sandwhich toaster. And even more remarkable is that on hearing her get out a package of soy hot dogs, I called out "Ricki, I don't allow." And even though I wasn't in the room, she actually PUT THE SOY BACK!! (Eureka!!!!!)
So how can Ricki be so two-sided? Well, most of us are. And it is definitely one of the facets of Down syndrome.

Fighting the Down syndrome "Stuck-in-the-Mud" Bug

Teens and adults with Down syndrome tend (like many of us) to like doing things a certain way. And, in actuality, it is understandable. Once they have learned and accomplished a task, why in heaven's name should they exert themselves to do it in a different manner? The answer is, of course, that being "locked" in a certain behavior can often be incapacitating.
So, to those readers who have younger children with Down syndrome, try to introduce variations occasionally into the way things are done. Breakfast menus can occasionally be a bit different. The child can get dressed in a different room, outfits that are usually worn together can be "mixed and matched", etc.
One of the most important items to introduce flexibility in is the house one sleeps at. In an emergency situation at whose house would your child sleep? If at all feasible, try and have him sleep there once in a while, as a vacation. Ricki has been very reluctant for me to not be on the computer (in her room) as she goes to sleep. So the malfunction of my computer (and subsequent composing of posts on my son's hardware) has been an excellent opportunity to alter the situation for her. And I hope to do this on a more regular basis (although through choice, not necessity…).
So try and institute some variations in your child's life. It may save you a lot of problems later on.

Variety is the Spice of Life

This week I added some variety to my life in a simple way. I have several regular walking routes that I use, all (except the shortest) with one steep incline and no traffic lights. One morning as I headed out for an approximate 45 minute walk, I suddenly decided to do it backwards. This meant, however, that my steep incline would be somewhere else in the walk, and not as steep, so I elected to change the route a bit, even though it made the uphill stretch a grueling all-the-way-up-the-hill-by-way-of-steps climb. Amazingly, both my lungs AND knees held out, and the change was enjoyable. A routine task become much more pleasing, simply due to the alteration of direction.
So think about how you can transform a bit of your routine with a small amendment or change , and enjoy a bit of difference in your life!

Taking Charge

Ricki has had a problem with bedwetting, probably more due to our family's penchant for being deep sleepers than her Down syndrome. We have tried (courtesy of a pricey doctor) various methods to finish this matter, with varying rates of success. (No, we can not use a buzzer as the noise scares her and she flatly refuses to wear it.)
Last time we were at the doctor I told him, "DON'T speak to me. Speak to Ricki. Let's make this HER problem." And at home, I have religiously been making HER mark off (daily) a sunny sun or rainy cloud on the "follow up" records. Suddenly she seems to care more.
This reminds me of how I was able to get my sleepyhead son up for yeshiva (high school) years ago. I made it HIS responsibility. I purchased him an alarm clock that could wake the dead, and informed him that I was not going to awaken him. The next morning he jumped out of bed like magic. (And if he hadn't, one time being late would have done the trick as well.)
I am applying this principle in several areas of Ricki's life. She is receiving "natural consequences" to throwing things on the floor, etc. It used to be that evry time we went to her exercise class, she would throw away her hair band (used to make a pony tail), and we would travel home with her in a rather unkempt state as a result. If I asked her where the band was she would reply "I dunno." This week I called her bluff and told her that I would sit and wait until she found the band. Suddenly she "remembered" where she had thrown it, and fetched it out from behind several large pillows.
SHORT TERM this method can take a few more minutes (until they see that you are serious). Long term it saves you time, money, heartache, and energy.

"Keep on Keeping On"

"Keep on Keeping On" is one of the regular phrases used by people in alcoholic anonymous. Now I usually do not get too excited by the rote repetition of phrases, or with people telling me what I should think. But Tuesday I saw that motto mentioned in Jeane Eddy Westin's TheThin Book 2, and it suddenly made so much sense. I was planning to weigh myself later in the day, knowing full well that my indulgences (again!) over Shabbas would probably do the whole week's loss in. But this phrase reminded me that one week's weight was not that important in and of itself. Much more of a concern is that this behavior is becoming repetitive….
So I decided instead to center on "Keep on Keeping On"… including a concrete plan to prevent the same behavior next week. (Number one being to NOT make pumpkin pie for desert…..).
And, by the way, this is true of SO many things. Years ago a wise young lady (my mom) told me that many times people can go through a hard time, a bout of depression, a period of bleakness. "The important thing is to keep on doing what needs to be done, to take one day at a time." Ie., to keep on going on.
So whatever your trials are, whatever you are struggling with… just keep on keeping on. Hopefully, eventually, the path will become a bit easier, or you will grow to walk the trail of your trial with head held high and confident.
(PS As it turned out, I even lost a smidgen of weight, although it was much less than what could have been.)

The Wedding Quiz

As mentioned in yesterday's blog, Ricki and I were at a wedding Sunday evening. What I didn't mention were the interesting conversations we had as we walked there and back. \going she asked me who the groom was. I replied that I really didn't know. After a moments hesitation she suggested that maybe the girl was marrying her father. I explained that she could hardly do that because girls don't marry their fathers, and her father was already married to her mother. (This mistake was obviously do to her confusion with the word husband vs. father. I doubt when saying the sentence that she actually had the girl's father in mind.) Then we got into a discussion about "wedding halls", what a hall needs to be like, and why.
On our return trip Ricki asked me if the new couple would be living somewhere else, what the bride's new last name would be, and more.
These are all topics that Ricki has discussed with me earlier, and which she covered in classes in school in the early grades. But it seems that she was a bit unsure about them. What pleases me TREMENDOUSLY is that, not being sure, she ASKED!

Ricki and the Bride (a VERY Visible Ricki)

[Image: Ricki trying to edge in to dance with the bride at a different wedding....]
Our downstairs neighbor’s daughter was married last night, and both Ricki and I were invited to the wedding. The bride had for years been Ricki’s steady babysitter, and she requested specifically that I bring Ricki. I wondered if she realized how problematic that can be.
Ricki loves a kallah (bride). What younger girl doesn’t? But in years past, that love translated into Ricki wanting to dance ALL the time with the bride. Quickly enough I was able to teach her that everyone dances with the bride ONCE, and the remainder of the time will let others dance with the bride. OK, that she learned. But she did not yet learn (or agree to implement) that one also need not dance in the inner circle, next to the bride, at all times.....
The dancing around the bride often involves 2 or 3 circles of dancers. The inner-most circle, usually of the kallah’s friends, often involves very fast-paced, intricate dancing. The outer circle is usually a bit more slow-paced. And since Ricki (despite several attempts by me to teach her) does NOT know even the basic dance steps, her presence in the inner circle only hinders and frustrates the brides friends, who want to “fly” on their feet.
So true to form, last night Ricki pushed in and got a dance with the bride almost as soon as she entered the hall. Then she started dancing in the inner circle. Sometimes she managed OK with the fast pace, but often when anyone cut in to the circle next to Ricki, she simply shoved them away. (ie., SHE has the right to be next to the bride, but very few others.) Several times I had to go pull Ricki out from the swirling masses in order to threaten her with immediate departure.
But at one point, something interesting happened. The bride had left the women’s side of the hall for a few minutes, but the dancing continued. Suddenly Ricki found herself INSIDE the innermost circle (as if she were the bride). Circled by spinning rings of dancers, she started doing the “dancing” she loves best: with few foot moves but intricate hand motions. It always looks very impressive, and within moments several women had approached me with “Is that your daughter?” While I did not relish the idea of Ricki getting so much attention, she was having a ball, and so was everyone else. Nevertheless, after a few minutes I gestured to Ricki to get out of the center and dance with the others.
And do you want to know how much Ricki enjoyed herself? Enough that as she finally sat down for a few moments to eat, the music started up again, and without a backwards glance, Ricki scooted out to the dance floor to mix with the twirling teenage friends of the bride.

Just Like Everyone Else (Almost)

This week the next edition of the “Disability Blog Carnival is to be posted, and the topic is “Holidays”. I sat and wondered to myself “What in the world is there to write about Ricki and holidays (chagim in Hebrew)? Ricki celebrates chagim with the rest of the family, just like everyone else. Well, almost.
I remember the first year that Ricki was in a play group, and I was eagerly anticipating the fun that she would have on Purim*, usually the most-loved-by-children- of all holidays. I had lovingly sewn for her a costume of a “tut” (strawberry), and we were well prepared for the upcoming celebrations. That is, until Ricki came down with a severe case of pneumonia. Thus a few days before Purim, I was going to visit Ricki in the hospital (my husband was there with her). As I watched the carnival atmosphere, grade school students prancing to school in their costumes, tears filled my eyes as I wondered why my daughter who had so much to contend with in life had to miss out on the festival of Purim. [In retrospect, if she HAD to miss Purim one year, I was glad it was then, when she was too young, probably, to really realize what she was missing. And to the credit of the Ezer MiTzion organization, Ricki and her older sister (see HERE),(who was watching Ricki for a few hours on Purim afternoon, so that her father could go hear the reading of the book of Ester), received a visit replete with singing and sweets.]**

[Ricki dressed as a "moon" one purim, "moon" being one of the global words that she knew at that time....]


But by and large, Ricki celebrates the holidays with us, doing (and enjoying) all. She goes to synagogue (for a short while) on Rosh HaShana, with a special prayer book I make for her. She fasts (or almost does) on Yom Kippur. She prepares decorations for the sukkah, and eats matzoth on Passover. However, it DOES take preparation.


Here are some ideas to help you prepare your child with an intellectual disability for the holidays:


-matching lotto cards (picture /picture or word/picture) to introduce concepts and vocabulary
- homemade books about the upcoming holiday, so they know what to expect, pertinent laws, etc. [See HERE for an article I wrote about teaching materials. It contains instructions on how to make homemade books.] Any holiday involving the use of candles should have the topic of fires and fire safety discussed as well.
- a calendar of the day(s) of the holiday (and days leading up to it), ideally with pictures of events, so the child can see when things are to occur
- for slightly older children, a time line (similar to the calendar) (with picture cards to match) of days ( or even parts of days), so he can match the pictures to the time, to teach the sequence of events.

[Picture credits: Seder night "Iturei Halacha"/Burning chometz a Hebrew book "___and Molly (I think) Prepare for Peasch" / Search for chometz from drawings of Yoni Greshtein. Please do NOT copy. They are here purely for educational example, not for use. I allowed myself to use these images for Ricki's use, as I PURCHASED the books. If you want to use the images, you should do the same.]


These items take time to make, but are good for use over a few years (laminate them!). [ I get out every year for a quick review books I made for Ricki a few years ago explaining detailed laws of Passover, for example.]

*Purim- a Jewish holiday in early spring, celebrating the deliverance of the Jews from annihilation in the time of Ester (see Biblical Book of Ester). The holiday is celebrated with gifts of food to friend, relatives, and neighbors, gift of alms to the poor, and the reading of the Book of Ester. Children generally dress up on this holiday in costumes (as well as at school parties in the days preceding it).

** [Her older sister, though, unfortunately witnessed that day the arrival to the hospital of a victim (“moderately” hurt) from a suicide bombing. The sight was not pretty, and it was not a very auspicious end to her Purim, to say the least.]

Sometimes I Get “Fed Up”

Yesterday morning, when I sat down to write the late-afternoon post, I noticed SEVERAL items thrown in back of the computer.

Papers, a soup bowl, a pair of underpants.....

Now, I had moved the computer and cleaned there THOROUGHLY just 2 days ago in anticipation of a computer technician’s visit. And always (when I see the stuff) I make Ricki clean up whatever she throws on the floor, whether it is behind the computer, next to the stove, or wherever.
Obviously I left the discarded items there and made her pick them up on her return from school. But sometimes I just get so “fed up” and exasperated with the innumerable times I need to intervene with Ricki. The fact that she needs behavior training on SO many areas... it just makes me tired sometimes. (But only occasionally.)

Sneaky Snack #3 – Caught Red-Handed

Well, I see that Friday seems to be the day that Ricki loses control (see HERE for last week’s incident), because again today Ricki went to the grocery without permission. Not only without permission, but expressly against my orders.
I first suspected the impending larceny when Ricki said “I am insulted that you watch me from the window.” Now this is a girl, who for all of her contrariness and drive for independence, still loves to wave goodbye to me as she gets into the school’s cab. So her statement made me VERY suspicious. I warned her very clearly that she was NOT to go to the grocery.
To Ricki’s bad luck, I was planning on going “walking” and getting a few thousand steps in before starting my pre-shabbas (Sabbath) preparations, and I arrived downstairs moments after she had gone down. And she was nowhere in sight.
So I promptly went to the grocery and caught Ricki red-handed with a bag of three (3!!!) borekas (borekas is the Hebrew equivalent of the Yiddish knish, a potato pastry... and a calorie bomb....), several pieces of marmalade, and a small chocolate bar. I promptly confiscated it, and as Ricki rejectedly left the store, I whispered to the cashier to charge it, and I would return later to collect it, not wanting Ricki to know that I had brought the bag home. (Her brothers will get the “windfall”.)
Obviously my word was not enough to stop her, so she will need to get a punishment this afternoon, both for going without permission, AND for not listening to me. Never a dull moment with this kid.......

The Little Boy with Down Syndrome

Well, Ricki’s last pair of glasses broke, so after her swimming class yesterday evening we went running to the optometrist to order a new pair of eyeglasses. As we were waiting, my attention was drawn to a cute 5 year old boy with Down syndrome. (And his 2 sisters were eying Ricki constantly. After a while, I mentioned to Ricki, “You see that little boy? He also has Down syndrome.”
-“No he doesn’t.”
-“Ricki, look. Can’t you see?”

And I could see that she did. So she started a conversation with him, and with his sisters. For once I felt that she was comfortable with the reality that she has Down syndrome.

The “Pigtails”

This morning Ricki brushed her hair (more or less), and then came to me with several elastic bands. Please comb my hair into “pigtails”, she pleaded.
-But Ricki, you know that most girls consider “pigtails” babyish....
-But that’s what I want. Only “pigtails”

I suddenly understood:
-Who in your class wears pigtails?
-Ruchama (her best friend)

Figures. Just like any other teenager.....

RICKI's a photographer- Special Exposure Wednesday!

This is a picture Ricki took!

Living With the “I’m Hungry” Genie (ie, Getting Back on Track)

The only “Genie” associated with weight loss, dieting, and food choices is the “I’m Hungry” genie, the one who somehow “magically” helps you regain what you have lost. There are no easy sudden miracle genies to help us loose. And why is that? Because in dieting, you are fighting against the body’s natural tendency to insure adequate calorie intake. So if you want to lose weight, you have to learn to live, sometimes, with that inner voice that is ‘warning’ you that your fat reserves are being depleted.
So, almost invariably we hit periods where we slip a bit in our exercise/dieting routines, and if that is ignored, one can slip back very quickly to the atrocious eating habits one had before starting one’s diet. (I had a period like this on and off for the last month.) So , since the initial damage is usually not too bad, it is easy to ignore the slip, and continue the downward spiral. One may often be MENTALLY aware that they are making bad choices, but suddenly the motivation and “stick-with-it that one had a month or two (or three) earlier seems like a wispy, effervesant smoke just beyond our grasp.

So how can we deal with this?

1. Discover and admit to the slip early. This is done by instituting a self monitoring system, whether it is daily logging of foods eaten, calories, or a weekly weighing.

2. Check if you are slipping in any of the things that contribute to the problem (See HERE to learn about problem evaluation. If you haven’t taken the time to make a good evaluation, now is the time.) I, for example discovered that I was not sleeping enough, not drinking water, and not doing aerobic exercise. So it is no wonder that I had trouble dealing with the genie.....

Correction of the contributing factors, and reinstating monitoring will often do the trick. If it doesn’t , one may need to reevaluate and reexamine the problem’s evaluation. Also consider giving yourself prizes for compliance.
Hopefully, all of these measures taken together can give you the ability to climb put of the overeating hole, and tone down the “I’m hungry” Genie, to a point where he is manageable.

The Family Gathering

A large segment of our family from overseas has been visiting Israel, and we have held several family (or part-family) get-togethers over the last week and a half. At the first family meeting, Ricki spent much of the evening clutching the hand of her grandmother, which I am sure was not appreciated after a while.
Saturday night the biggest party was planned, so I outfitted Ricki with her digital camera and several batteries. She was not the only person there with a camera, so she felt right at home. She spent the evening drifting around the room, clicking hrt shutter shutter, and trying to have people pose for her.
The end Result?
Most ot of her shots were pretty good, and she was kept busy enough that she (almost) didn’t look at the food.

RESOLUTIONS

Since many people use early January as a time to make new resolutions, I would like to make a few comments.
Resolutions once a year generally just don’t work. And the year that I lost the most weight was a year that I did NOT make a weight-loss pledge. It was the year that I decided to take care of myself. Losing weight was a natural result of an overall effort to listen to my body and to take care of myself.

RESOLUTION GUIDELINES:
1. Pick one SMALL thing to work on. Small changes can bring results if you actually DO them. And one small change added to another (and another) over time, can be a very effective tool.

2. Pick a goal that is an action. Rather than “lose 30 kilos” (the result of action), choose a goal like:
-measure portions at lunch
-take an early morning walk on Wednesday and Friday
-drink 8 cups of water daily
-keep a food diary

3. Implement a monitoring system. No resolution will work if you do not have a monitoring system to remind you to keep the change going.

4. Decide on prizes, and mark them in your calendar, which you will buy (or give) yourself during the year if you consistently keep your resolution. It can be a material item or an activity. You can give yourself big prizes on occasion, or even small daily ones (any day that you do a half-hour of aerobic walking you reward yourself at 12:30 noon with a half-hour of reading time, for example.....).

GOOD LUCK!

My resolution is to be in bed by 1 o’clock AM every night.

The "Hamster" ?!??

Several years ago I was an active member on the “UNO MAS” (Down syndrome) website. At one time there was a person who posted there about her roommate who had Down syndrome, and she nicknamed her “Hamster”. This nickname did NOT go over well with the group at Uno Mas, who felt, correctly, that to constantly call ones roommate by a rodent’s name was degrading and insulting.

Fast Forward to.... yesterday morning:
I confess that as Ricki left the house yesterday morning, to catch her ride to school, the word “Hamster” came to my mind. You see, “Hamster” in Hebrew is “O-ger”, a word implying “hoarding”.
The hamster stuffs his pockety cheeks with food and takes it with him as he scurries home. And that is EXACTLY the image that came to mind as I saw Ricki gathering FOUR bags to take to school. Friday is a short day, and her black school bag could easily handle the items she would need for the morning. If you want to stretch things, the black school bag and a small plastic bag for her mid-AM snack would be ample.
Now often I have to contend with this type of scenario. I have frequently gone through her bags with her, explaining that there is no reason to take her entire photo collection to school, other assorted unnecessary items, etc...
But as I gazed with chagrin, I saw Ricki gather 3 large shoulder bags, and a rectangular artwork-case as she prepared to exit. I don’t even know what they all contained. This was the largest collection of items that I had witnessed to date. If I had stopped her to examine the contents, or to try and reason with her, she would have missed her ride. (At least she would not be on the street like that, only at her school.)
And I confess that at that moment, my convenience overrode my natural inclination to not let Ricki out the door looking ridiculous. So that is why “hamster” came to mind......

An Independent bus Ride OR The The Sneaky Snack: Part Two

Tuesday evening, Ricki came home from music class, this being the first PLANNED “bus ride alone”.

The music teacher called (a bit late) to say that Ricki was on her way, having seen her get on the correct bus, and mentioning to the driver where Ricki needed to get off. (ie, not THAT independent a ride, this first time....).I quickly sent my son to meet her at the bus stop. But fifteen minutes later he called me from his cell phone to state that she had NOT arrived.
So where in the world was she?!?
Did she come on an earlier bus, arriving minutes before my son did? If so, where was she?
Did she get off the stop before/after? Again, if so, she should be home already!
A few minutes later, she showed up downstairs, and we all breathed a sigh of relief.

Then I noticed the roll.
“Ricki, where did you get the roll?”
“I dunno....”
“Where did you get the roll?!?”
“in the grocery......”

So the roll (and chocolate and marmalade....) were confiscated, and Ricki got a rousing “telling-off”.
I hope that this is the end of this episode of a “sneaky snack”, and that grocery store visits don’t become a habit......