A Belligerent Ricki and the Soya Patties

Ricki came home at three o’clock and asked me to type the access code to the computer. I refused, stating that computer use would be only in the evening, after various other activities. (First comes homework, some studying with me, some fun activities, and a bit of sport.)
Within five minutes a bored Ricki was heading to the refrigerator. “I’m STARVING...” said the teen, only two hours most after having lunch at school. She quickly grabbed TWO soya patties.
“Ricki, I don’t allow. If you are still hungry, take a fruit....” She refused to put the patties back, and frankly, I didn’t have the strength to take them from her. “Ricki, if you don’t put them back, there will be NO computer this evening.” I gave her the option of waiting until I counted to three, but it didn’t go.
All evening she was complaining about being bored. I didn’t open the computer. I hope she learns the lesson. Mommy means what she says.

Good Peer Pressure

Here in Israel, kids in school have a “mini meal” at about nine-thirty or ten AM. Traditionally, this is bread, which IF a child didn’t eat breakfast in the morning, makes sense.
For the last several years, Ricki has not eaten this meal, because she DOES eat breakfast at home, and anyway with her Concerta medication kicking in full force, she isn’t hungry.
Now she is in a new school, and is interested in having her 10 o’clock snack. The first day I packed her some a pear, but she returned it untouched. Wednesday, she asked to take cookies (I limited the amount), and she ate them. Since Ricki is rather overweight, I was not too pleased with this turn of affairs.
Then on Thursday, Ricki prepared for herself a cucumber and red pepper, and a few grapes. “I want to take like Ruti does.” (Ruti is her friend.) For once, hooray for peer pressure!

PS No, in the end she didn't eat it!

Excuses???

(Was written on Tuesday evening).
I wanted to go "walking" this evening, when Ricki had some free time, but didn't manage to. I was too busy. All (but ALL) of Ricki's new clothing need alterations, due to her excess weight. I have to buy for her width and then shorten skirts, and shorten the sleeves. (Shortening the sleeves on ONE blouse easily takes me 1 1/2 hours....)
And if I go out NOW at midnight, there is too big a chance she will stir, see that I am gone, and pop out of bed.....
So I'm left with the 7000+ steps I already logged today, and possibly the chance to go to bed at a half-way reasonable hour.....

Only Healthy Living

Yesterday my son-in-law's younger brother died. At age 26! APPARENTLY healthy until 14 days ago, he collapsed suddenly after three months of super-strict dieting. His death was compounded by swine flu, and the main cause of death was simply full systemic collapse.
I see so clearly that the best chance we have of sticking around in this world for a reasonable amount of time is simply HEALTHY living. Not dieting per se, but consistently exercising, eating correctly, and sleeping normally (I still am behind here, but am working on it....).
NO shortcuts. Just living healthy each and every day.
8 hours sleep.
Eating sensibly.
Not being a "computer 'potato'"
Walking and walking.
Laughing and smiling.

Loving our family as long as we are around....

Clothing Shopping—Improved!

On Sunday I went with Ricki to buy some vests for school, and again on Monday to look for some clothing for the upcoming holidays.
I am happy and proud to report that Ricki really behaved VERY well. Both times.
In one store we saw a mother with her older daughter (with Down syndrome), and Ricki apparently remembered her from camp a year ago. Ricki tried to start a conversation with the young lady, but she didn’t seem so interested. Her Mother, however, did talk a bit with Ricki. Then the mother commented to me. I saw you together with her on the bus a few years ago. What a difference in behavior!”

Yes, behavior limits and modification WORKS.
Yes, it takes planning.
Yes, it is work.
But its one of the most rewarding things I have done.

First day of School / an HONEST Chance

Yesterday was the first day of school. The driver didn't show up, but at least Ricki got up (and awake!) on time. She was very pleased, however to have an old friend (from her exercise club) in her class. I told this girl's mother(who also is going from inclusion to special ed), that we MUST give the teachers the benefit of the doubt. (After all, they ARE working a hard job for peanuts....). Let them get to know the girls and their abilities. Let us establish OURSELVES as normal moms, not professional fault finders. In another month or so, if we think anything is reaslly necessary to change, THAN we can broach it. But lets give the teachers an honest chance first.

"Nachum TaKum", or my Roly-poly Gal

Well, school starts today at 8:00AM. Ricki's bus comes at 7:25. So she has to get up at 6:30 at the Latest!
So last night I put her in bed at 10:30.
She got up for a drink.
She got up to read her imaginary friend "Gili" a story.
Then she decided that she needed a bath.

I tried yelling. Begging. Ignoring. Not talking. EVERYTHING.

She is still a bit on Colorasdo time. She hates to go to bed alone (we are working on that.... sleeping arrangements in Colorado threw us back a bit there; she had to sleep with me, there being no room elsewhere...). She is probably excited about school as well.

Don't ask me HOW she will function sanely today.....

School starts on Monday... in Caravans

We have received notice that Ricki is to start school.... her first year in a separte "special ed" program. All the talk about a new and better building has not yet come to fruition, though. They are studying in the same old "caravanim" (portable temporary classrooms), simply in a MORE distant location, more far from any "regular" students. I am trying not to jump to bad conclusions.

August 29th- Thank YOU

I first started with reader-counters a year ago.
Some 15,700 hits ago.
I am averaging something like 55 readers a day.

I am gratified, and thankful.

THANK YOU, DEAR READERS, FOR STICKING WITH ME!

For Special-Needs Parents: the Best Seat on the Plane

When I am flying on an international flight, with a 777, I always try and get the seats in the VERY last row. It has several advantages:
1. The other rows have three seats; this row has two. You can seat your child by the window, next to you, and with no one else in the row.
2. It is near the bathrooms, water, etc. And the service cart is almost never blocking your way.
3. There is about half a seat of extra space next to these two seats. This makes it easty for you to get up to stretch without bothering others.

The DISADVANTAGE is that you will be one of the last persons off the plane. Don't use if you have close connections.....

Odds and Ends on Walking and Dieting...and Coming Home

Well, I am finally home after three weeks in the US. I loved my stay; nevertheless it is good to be home.
It was great to get out last night and do some walking after spending two days in transit. I even didn't have the chance to walk as much as I had hoped in the airports, as one flight was delayed, so they had to ferry Ricki and I with a service car in Philidelphia in order to reach the next flight. (We were the last ones to board.)(Our luggage did NOT make that connection; we should finally get them today.)
I am also enjoying the luxury of having all my pots and pans and a full kosher kitchen (as opposed to the bare minimum I had in America). The wonderful taste of REAL vegetable soup ( a BIG pot full, which can contain several types of vegetables and herbs) as opposed to a packaged soup. The fun of chomping on lettuce (we use special kosher bug-free lettuce, which I didn't find in Colorado....), and the wealth of cheap fruit.
...Oh, and the lovely sea-level air, which one or two deep breathes will fill your lungs with enough oxygen that you are not panting for more. Suddenly I can walk QUICKLY, without pausing to catch my breath.
And luckily, I missed, it seems, the worst of August's heat. It is coolish at night (well, at least not hot), and I was able to do my aerobic walking without getting too overheated. I may even have to start walking more hills, as my regular "pretty flat" circuit is suddenly too easy.
What I will miss is my mother and brothers, the tremendously beautiful mountains (the pictures I post only give you an idea....).... and, oh yes, and the not-as -humid weather.
When I was in the US, my son noted that the best part of any trip is coming home. It certainly SHOULD be that way. That doesn't mean that we don't need vacation, nor that I didn't enjoy myself. But as Ecclesiasticies says, "there is a time....." (for both).

The Digital Picture Frame

My brothers and I purchased for my mother as a parting gift a digital picture frame. We knew in advance that we wanted to do this, so I prepared the SD card for it while I was still in Israel, and simply added while here more pictures. I maintain that this is one of the greatest gifts you can give a grandmother (and great-grandmother). This way she has pictures of all her offspring, in one compact space.
We set up the frame while she was out on the porch, and waited to see how long it would take her to notice it. (In all fairness, we have all stolen her desk for computer work, so its no coincidence that she didn't notice the frame right away.) After she found it, my mother, older brother, and I enjoyed watching the photos for a long time.
Family is special......

Calypso Cascades

Friday was our next-to-the-last chance to hike before our return home this week. We hiked up to "Calypso Cascades", a round trip hike of 3.6 miles (5.8 kilometers). This hike has a nice increase in altitude (about 800 feet, which is approx.240 meters). Here is a picture of the trail: However, this trail has an advantage that it is a gradual incline part of the way, and only the end is really steep. And all along that gradual incline are small waterfalls. So the scenery makes the effort definately worthwhile. Ricki took the hike fairly well (despite occaisional insistings that she was NOT going further), and even smiled for the camera on occaision. (Those pics will be for a later post.....but here's a video of the falls)(It's much more impressive in real life....)

The Missing Sunglasses

Friday morning my mother, Ricki, and I were all up early. We wanted to set out towards the calypso cascades trailhead early, as the parking area there is small. (If we would get there once the parking area is full, it would mewan parking much further away and adding that extra distance to the hike.)
Suddenly Ricki came into the kitchen with a pair of sunglasses, and I told her: "Those aren't yours. Put them back."
Fast forward seven hours. My brother's step-son pooks his head into the porch. "Have you seen my sunglasses?"

Uh-Oh.

A massive search of the house was started. Ricki usually tells me where she has put articles like this, but this time she was not cooperating, or so it seemed. I looked all through our studff, but couldn't find it.
Finally a half-hour later the glasses were found where all the sunglasses in my mom's house are stored. When I told Ricki to put the glasses back, she lazily handed them to my mom, who assumed that they were from her stash, so she put them away there.
While Ricki was lazy in giving them to my mother, I am hasppy that she hadn't stashed them away somewhere in her own belongings. Ultimately, she HAD returned them, much to my relief.

Ricki the Felon?/ Thank G-d we Found Her

You are simply not going to believe this post. I was going to post about our hike on Friday to Calypso Cascades, but that will have to wait, because we had a REAL surprise on Saturday.
I like to read on Saturdays, and Ricki (when not home) tends to be a little (O.K., a lot....) bored. So I have made an effort to play with her a fair amount. So on Saturday afternoon, I promised Ricki that at 4 o'clock we go for a walk. She usually doesn't want to go walking with me, but if bored enough, I figured she just might want to. She said "Let's go now."
- "No, Ricki, it's too hot right now. Soon. At four." I suggested that she go down to our room and rest a bit.
About half an hour later, I went downstairs and saw that she wasn't there. A quick search of the house, garage, and yard yielded no Ricki nor no clues as to her where-abouts.
If Ricki was in Bnei Brak, I would not worry so much. But here in the US, in an area she is unfamiliar with, and with no friends living nearby, the situation was definitely one of "Pikuach Nefesh" (danger to life). I had visions of her getting lost, abducted, etc, and knew that even if a good person would find her, Ricki did not know my mother's name or address, and indeed she could not communicate in English at all. I quickly called my older brother and we set out to search by car.
We did a quick look around the area, driving the way I always walk with Ricki , and asked a few neighbors, with no results. We checked in at my mother's house to see if Ricki had shown up, but she hadn't. I went to get my passport so that we could go to the police. As we left the second time, the neighbor across the way said " I've called almost everyone in this area, and so-and-so said she saw a teen with a suitcase walking up the road towards the hill."
So we took off and found her two blocks away, along with a man who was trying to talk with her. (She doesn't know English.) The man saw her taking mail from the roadside mailboxes, and went to stop her. (Apparently teen vandals of the mail here has happened more than once, since the mailboxes are at street side, and not on the houses. Taking mail just happens to be a felony....) It also seems that he was as yet unaware that Ricki had Down syndrome, AND he had already called the police. I walked home with Ricki asking my brother to speak with the man. [Ricki at first was surprised to see me, said that she was just taking a walk, and had taken the suitcase with her because she "wanted to".]
In the end, it seems that she had emptied all the mailboxes on the way, tearing a few of the letters as well. Eventually the policeman, the scowling witness (who calmed down when he realized that this was not your ordinary teen vandal) and my brother managed to get the mail returned to the proper boxes, and the policeman came to take our name and phone number. Ricki only really started realizing how serious things were when the officer appeared. She made hearty promises not to repeat either mail removal or trips outside on her own.
"Well", I quipped to my mother a few hours later, "at least I have what to write on my blog". Never a dull moment......(except perhaps, for Ricki).

"Sores" / Cub Lake

Ricki enjoyed our hike on Wednesday much more that the previous hikes. It was the longest we have done so far (4.6 miles / 7.2 kilometers ). We climbed to cub lake and back; most of the trail is gradual incline or level, just the last bit before the lake in a hefty incline (total elevation gained about 540 feet).
One thing that bothered her were a few minuscule "sores". Ricki has a big tendency to always point out to me any "injuries" that she has. Most I can not see with the naked eye, or just barely. She always requests a band aid, but I refuse unless there is blood emanating from within. Instead I put "cream" when we get home.
In the car on the way back to my mother's house, we all related what we enjoyed. My mom liked the sky, mountains, and Rocks. I liked the lake. Ricki liked the ground squirrels and the ducks (they are in abundance at the lake....). At our arrival home we found a deer in the yard.

Postscript to "You Must Have Trouble...."

First, please go back and read this Post.
Last time I was in the US with Ricki, 2 years ago, I really did have a fair amount of trouble with her in stores. This time I haven't really. The difference is very evident, and is considerable. It gives me such encouragement, as it is suddenly so evident to me just how much we have accomplished in this area in the last two years.
"He who sows in tears reaps with JOY!"

Finally, Pictures....

As youan see, we are in lovely country. (I can not fiqure out how my Mom can live here and not believe in G-d.) The hiking has been difficult for both Ricki and I, but the lovely vistas push us on.

This is Ricki and her Grandmother on the trail.

A Real Conversation

Sunday I had the pleasure of overhearing a REAL conversation Ricki had on the phone. She often tends to talk "short-hand"... not in a truely understandable way. But Sunday morning, she was speaking to her father, and was relaying item after item clearly, correctly, and with her hand on her hip, as one would expect from any teen....
Its at moments like this that I see how much she's grown.

"What?"

Usually when Ricki asks me a question, and my answer is not understood by her, she will say "WHAT?" again... and again... and again. If I am not paying attention, I may misunderstand, and assume that she didn't hear me (especially if she is not wearing her hearing aid). Today I was surprised by her. She asked what was for supper, and I answered "goulash". She looked puzzled, asked "Whast?", and then added: "I didn't understand what you said."
EUREEKA!

Ricki and Shabbas (the Sabbath)

For those of you who don't know, practicing Orthodox Jews do not watch TV on the Sabbath (if at all). We do not have TV at home, but here at my mother's house, where Ricki has no friends and little to do in her free time, she has been watching some TV cartoons. (Makes me very glad we don't have one at home....)
Anyway, on the Sabbath I like to read, and here in Colorado I tend to do the same. And Ricki has been rather bored as a result. But she has been a REAL tropper and didn't try to turn the TV on, waiting patiently until the Sabbath was over. A real accomplishment!

Laughs and Laughter

(This post is being posted from America, so don't ask why I am up at 10 PM on Shabbat. It is One thirty Friday afternoon here.)

Ricki has been a rather serious creature of late. Here at my Mother's house we (including "I") laugh a lot more than I do at home. I don't know why, but probably because my older brother (who is also visiting my mom) keeps making facetious remarks.
The first few days, every time someone laughed, Ricki "took up her arms". She got angry, snarled, etc. We realized very quickly that since she didn't understand us (speaking as we were in English), she assumed that any laughter was a crack at her expense. My mother's first reaction to this is "Boy is she self centered." And perhaps she is.
But as the days passed, Ricki got a bit less touchy. I don't know if that is due to her gaining confidence in us, or getting used to the fact that we laugh around here. More relatives are arriving on Sunday, and it will be interesting to see how that affects the status guo.

Every Stone and Mosquito

Ricki has been a grudging participant up to now in our hikes. I suspect that Ricki considers every stone in the pathway and every mosquito that has bit her as personally being "out to get" her. She oinly sees the difficulty of the climb, and doesn't see (or desire to see) the health benefits. She DOES enjoy the grand views, but she has already declared that she is ready to "go home" and "no climbing tomarrow".

Accepting Help

Yesterday Ricki and I did an easy climb to Alberta Falls (only about 200 feet increase in elevation). On the return path, we decided to tackle a downhill trail leading from the Alberta Falls trail down 2.8 miles to Sprague Lake. I figured that this way I could get in my 10,000 steps without trekking uphill any more than I had done already.
We quickly discovered that the trail was not a well-kept one, and was full of stones. This made the going hard for Ricki, but all in all she handled it like a trooper. However, after a while came her complaints of being thirsty. My mom had a pack with a bottle of water, but my pack had been loaned to my visiting son. Instead I had prepared 2 bags of drink, and a snack for Ricki, in her bag. Suddenly we realized that somehow she had left her bag and drink at home.
To make a long story short, by the time we reached Sprague Lake, we were thirsty, hungry (breakfast had been very small, and many hours before), and tired. THEN we discovered that the shuttle bus to the parking lot does not stop at sprague lake (nor where its access road meets the main road), and we were faced with about another mile hike to the car.
At that point my mom flagged down a car with a couple, and they were quite willing to give us a lift to the parking lot. We thanked them, and they said "pass it on".
I don't know about you, but I prefer to give than to take (in general). But sometimes wisdom is knowing when you DO need help, and to accept it gracefully. Whether you are carrying several packages, a new mom with a tiny baby, a stranger in a new place.... sometimes you need help, and the smart thing is to accept it. That way, you can return to being a "giver" sooner.

Allowing Yourself

As I pointed out in yesterday's post, I attempted (and suceeded!) in doing a very strenuous hike (for me) on Monday. Above scenic Bear Lake there are three other lakes, Nymph, Dream, and Emerald. When I had last visited my mother, two years ago, I only climbed to the first two beyond Bear Lake. On Monday I stretched myself a bit (OK., a lot...) and trecked up to Emerald as well.
It felt good to meet the challenge, and the view was stunning. (Sorry, the pictures will have to wait till I get home.)
What I noticed is that I was the fattest lady on the trail. There were a few overweight people besides me, but only a few.

Whch brings me to my point today. If you are overweight (or whatever), can you allow yourself to do things that are not done? How many times do we deny ourselves the chance to do something because we are "too heavy", "too old", , a parent, an adult, a---- whatever. If something looks like fun, is moral, legal, and affordable.... don't deny yourself the pleasure just because it "isn't done".

Acceptance of Yourself

I'm in the Rocky Mountains (one of those special places that G-d created) enjoying the time to relax- AND exercise! Many of the hikes here involve a good increase in altitude (yesterday I hiked 6 kilometers -3.6 miles- , with a 185 meter -605 feet- rise in altitude! But the lovely scenery makes the effort worthwhile.
Ricki also finds the climbing a bit hard, aqnd complains bitterly at times (spits at rocks that get in her way), but all and all is doing OK.
What I want to write about this morning is acceptance of who and what we are. On one of our first hikes, as I was still struggling with the higher altitude (the air is actually thinner here than on the mediteranean coast....), I simultaneously found my knee not cooperating very well when we needed to take very high steps up or down. So my mother (who is , thank G-d, in excellent shape) offered me her cane (which she had taken along for balance on the steep declines). At first I was embarressed to accept it. I mean, I am younger than her! It was hard to admit how bad my physical condition is. But in the end I acquiessed.
And yesterday, as I very SLOWLY made my way up the inclines, all the other hikers passed us by. And I needed the cane here and there going down. And I admit that my wish to loose weight is not only for health reasons, but because I would enjoy not sticking out like a sore thumb. Many people who zipped past us comented on how great it was that we were out on the trail. I know it was meant as a compliment and encouragement, but I sometimes felt that they probably muttered under their breaths in wondermeant that I even attempted the climb.
So I had to deal with being different, even tho' that difference is the result of my own past bad choices. Ricki has to put up with being different every day, every time she ventures out the front door.
So is it any wonder that she gets growly sometimes about it? For once I think I am really feeling what emotional battles she is up against. And fighting that battle of self-worth is probably daunting for many of us. And instilling self-worth in any child who is "different" in any way is surely not easy. The only thing that I think can help is pointing out the good things that our child does, his successes, and our love for them. But I think we must have to pour in HUGE amounts of that in order to contradict the onslaught from outside. I question very highly if I do enough.

Mommy the (Almost) Perfectionist

A few weeks ago I cast some plaster-of-Paris animal figurines for Ricki to paint with water colors. The statuettes came out very nicely, but the water colors didn’t. Ricki painted them all sorts of absurd colors, and ended up with eight animal sculptures, all of them painted a muddy black-grey. And Mommy wasn’t very happy.
I had imagined eight figures at least slightly reminiscent of the animals they represented, and these were not. They didn’t sit very well with either my esthetic side.... but it was more than that. Now most people would say that she had fun, and what do I want from her? So I at least kept my disappointment to myself. But it rankled me, because I was sure that she was capable of much better work.
So I recast TWO additional sets of the molds, and this week I had her paint one set... along with me. I painted the second set. I showed her how if one uses the light colors first, the other colors stay cleaner. I showed her which colors I used. Now she did not agree with me one hundred percent, and enjoyed painting the lion’s mane blue. [Here I had to fight that little perfectionist monster in my soul, and realize that creativity and fun are also important.] But the end results were MUCH nicer, and I felt quite vindicated at my assumption that she was capable of enjoying the work, yet turning out a more colorful and “normal” job.

The End of the Concerta-Less Day

Remember that day that I forgot to give Ricki her concerta? Well, I forgot to tell you something that occurred that same evening. Ricki was trying to get me to turn on the computer for her, and I was stalling, hoping to get some better behavior from her. Suddenly she disappeared into the kitchen, and I hear the water running. She was washing the dishes, this being her personal “peace-pipe” when she wants to get on my good side. I was busy, and not paying too much attention.
Suddenly Ricki was at my side, with a worried expression.
“The suds are all over the counter.”
I flew to the kitchen in a flash, and discovered the sink high with water, the strainer cover of the drain clogged with food debris. But that was not the worst of it. This sink is a bit loose, and not adequately attached to the closet around it. So I had a flood of water in the cabnit under the sink, which of course had poured onto the floor as well.
I deserve a “Good Mommy Prize” for not yelling. She MEANT well.

Kosher Food and Ricki

Since Ricki and I are both observant orthodox Jews, we eat only Kosher food. She is used to the fact that in our town, just about everything available in the local store is kosher.
However, such is not the case in America. Before our previous trip, I had drilled into Ricki that she could only eat what I agreed to. And all in all, she managed that pretty well last time.
In the intervening two years, she has become much more well-behaved in stores, but more beligerant in her relations to others. I was afraid that her teen side would interfere with her agreeing to only eat under my approval. However, on our arrival, she was given something by her grandmother (who knew which certification to look for). And Ricki right away came and asked me if it was kosher. EUREKA!

Good Morning!

To any readers who wonder what happened to me today, I am posting now at about 6 am (after 8 hours sleep) from the Rocky Mountains (in Colorado, USA). Posting may be a bit erratic/different times over the next three weeks.
Ricky and I are visiting my mother. The flights were tough on Ricki, but she behaved OK. During my previous trip with her two years ago, Ricki did not sleep, being entranced my the Micky Mouse cartoons on the in-flight entertainment, and when I tried to sleep, she elbowed me in the ribs. This trip,not wanting to arrive UTERLY exhausted --as opposed to moderately so - - I had warned Ricki in in advance that the "computer" would be turned off in the middle of the flight, and this helped tremendously. She slept for about 5-6 hours, and I got in about three. (It's not much, but a heck of a lot better than none!)
However, by the time we reached Philidelphia she was not in a good mood. She was being a bit nasty to others (kicking their bags). It was early in Phili and the time in Israel was already noon, but I could not give Ricki her regular dose of Concerta as it was too early for the time in Colorado, our eventual destination. And finding a KOSHER jello-yogurt consistancy food to give it with was also problamatic. (Before the trip I had searched high and low for an under-100cc jar of applesauce to take with us for this purpose, but didn't find anywhere! (And in Philidelphia half the stores were closed in the duty free, due to the early hour. We even had to wait onboard the plane at our arrival for an additional twenty minutes while they set up a customs/border control to accomidate us.) (I was a bit surprised at this. I mean, they knew at least twelve hours in advance that we were on our way....) But finally I decided that even if it was a bit early for mountain time, she needed the Concerta, and luckily I found a kosher yogurt for her.
On our arrival we went to stock up on kosher food, and set out for the mountains. There we barely staggered through unpacking, shoers, and supper before falling asleep. (In the end, I went to sleep at 8, and of course awoke at 4AM today. But Ricki is still asleep....which is good. Today we can start hiking.....

My Parents and the Plaster Figurines

Whenever I see any figurines of plaster of Paris, my mind transports me back some fifty plus years to the time when my older brother had braces.
We lived at that time in Macomb, Illinois, where my father taught chemistry at Western Illinois University. And every2-3 weeks (and later, less frequently) my brother was driven by my mom all the way to St. Louis, to have work done on his braces. Occasionally I went along for the ride, and I remember two things vividly: the mighty Mississippi river (and the long bridge spanning it), and the closet chock-full of plaster of Paris figurines at the orthodontist’s office. He used them as prizes. These little white statuettes were fascinating to me. I would have loved to have a collection of them of my own.
Now you may ask, why in Macomb, then a town of twelve thousand, was there no orthodontist? Actually there was. But when my parents started investigating the possibility of sending my brother to the orthodontist, they realized that the one located in Macomb refused to accept blacks as customers. And my parents went to all the expense and considerable inconvenience to go instead to St. Louis. Now THAT is called integrity and sincerity!!

...and the other side (sort of a continuation from yesterday)

Often I write my posts in the evening, and post them in the morning. When I don’t have time I will usually write early in the morning. Yesterday it was only after 10 AM that I got started, having been up late on Sunday evening. Ricki had just gotten up, having also gone to bed in the middle of the night, and was getting bathed and dressed (on her own). A bit later she came carrying a bag of flour. “Is this flour?” she asked.
Immediately visions of her previous escapades of Ricki trying to make a cake on her own floated from my memory cells.
“Uhh, Ricki, no cakes today!”
“I want to make pancakes...”
(after a pause to pull myself out of what I was doing...) “OK, let me sift the flour for you.”

So I quickly helped her make the batter, she lit the fire, and fried the pancakes herself very nicely. [Better 5 minutes away from the task at hand (on the computer) than letting my teen wreck havoc in the kitchen alone.]

Concerta, ADHD, and Down syndrome....

[Preface: Ricki has, in addition to Down syndrome, ADHD. She exhibits it not so much through hyperactivity, but rather through belligerent, goading behavior. This is NOT typical behavior of children with Down syndrome.]

“Hey, Mom” queried my oldest daughter, “Did you forget to give Ricki her Concerta* today?”
“I sure did!” I ruefully admitted, “And by the time I remembered it was too late to give her, or she’ll be up half the night!”
[I should have given it to her. In the end she WAS up half the night, as she couldn’t sleep because I was neither at the computer nor in bed. When I finally went to sleep, she popped out of bed and poked her head into the room to see that I was actually going to sleep. As I said earlier, I know I have a problem.]
During the school year I rarely, if ever, forget to give Ricki her medications. It is part of our normal routine. But when that routine gets tampered with (like during vacation), sometimes I can forget... for a while.
Generally within an hour she will start acting belligerently enough to remind me that she needs her Concerta. However, there are those days that she acts OK (at least until it is too late to give her the medicine). There have even been days that I wonder: maybe I can take her off the stuff? And then there are days like yesterday. NOT that she was that bad. It was just like she was a muted jazz piece waiting to erupt into a strong bass rhythm.
In the late morning (already too late to give her the dose), we went shopping. At first she acted up a bit but I laid down the law: “Either you behave or you go HOME! (And if you want to go to seminary-high school – after our return from America, you will need new blouses or you won’t be able to attend....” She was, all in all, VERY good in the stores. It was one of those moments of “Maybe we can do without the Ritalin, she’s getting older already....”
But by the time we returned home, she was tired and bored. And all her crankiness stood out. It was nothing terrible, just a constant grabbing of anything I was working with, a constant aggressive pushing and shoving.... enough that her sister picked it up on the spot.

*Concerta is a type of Ritalin that works for 12 hours. It has the advantage that it covers both school AND homework time, and the “let down” as it finishes is very smooth and gradual.

[note: a nice sequel coming up to this tomarrow...]

Abusive Talk

( Note: the first bit is a bit hard to read, being couched in vague terms, but this is to protect someone’s identity.)
I have a son/daughter who used to be very self-righteous. This person would become very incensed at any indication from me that they had acted improperly.
One day, I spoke to this person about washing their dishes, which they had been requested to do, and which had consistently not been done. They seemed to have intended to wash them, but inevitably the cutlery and plates would sit in the sink until I took care of them. This person insisited that they had, in general, washed their dishes and yelled at me for saying that they had not done so.
This scenario repeated itself several times. Eventually (and rather quickly I might add) I gave up, and simply always did the dishes. It was easier than being yelled at. (Eventually I did work on it through other means, but it took a while.)

The point here is that it is very easy to cow someone with speech. If this capitulation of mine, as a parent, was so quick, imagine the poisonous effect of abusive speech on a child. Parents may find it very easy and (temporarily effective) to browbeat their children into obedience. For me, the experience of being bullied through speech was a real eye-opener as to the quickness that the victim will capitulate, and the negative feelings generated in the receiver. If you are a parent that yells, look in the mirror once when yelling like that. It should give you pause. Love is DEFINITELY not being communicated.
In Israel, at least, now is the summer break, and even the boys are home from school. Let’s be extra-careful about the ways we use speech, and the ultimate message we are delivering to our offspring.

“We Eat Scotch Tape for Lunch” and GIFTS

“We eat scotch tape for lunch” I remarked to the quizzled local school-supplies store lady. She had been a bit curious as to way I was buying scotch tape AGAIN. I buy rolls and rolls of it. I should buy stock in the company already....
The truth is, Ricki overindulges in her scotch tape usage as consistently as the sun rising and setting. One of Ricki’s favorite pastimes (as I have written about before, HERE) is to wrap “gifts” of paper (she MAY throw in a drawing or two), which she precedes to top off with rolls and rolls of tape around and around the package. No indiscrete, well-hidden tape closure for her....
Finally the other day I was annoyed enough with the lack of scotch tape (when I needed it), that I sat Ricki down for a talk. Not that I haven’t conferred with her about this in the past. I have. But once or twice is rarely enough for her (how many times to repeat something before it sinks in can vary widely....), so I reverberated my request: No “gifts” of paper for friends. (No. Lo. Neytt. Nada....) And, amazingly, she hasn’t done it for a few days. But on Monday, when I went to the bookstore with Ricki in tow, she suddenly appeared with a bag in her hand. “Here, I picked out 4 gifts for me”, she said, showing me the four wrapped books within. I could see that they were not professionally wrapped, that the storeowner had “wrapped” them knowing that they were necessarily being purchased. In the end, after unwrapping them all, we discarded three and kept one.
But what I can see from all this is that Ricki wants to receive gifts. I buy her many things, even calling them “gifts”, but usually they are NOT wrapped. Maybe if Ricki gets more gifts (wrapped ones) , she will feel less of a need to wrap up her imaginary ones? I’ll try it and we’ll see. (Not more gifts, just more WRAPPED ones...)

Seven Things That I Love.

MUSE over at Meander has tagged me to write about "seven things I love".

1. I love to see my children with their children, and their nephews and nieces. I see the love and concern, the gentleness, the strength of good education... and I know that I have done my job well.
2. I love pea soup after a fast. Lots of liquid, protein, and easy on the tummy.
3. I love Jerusalem. I love driving up the long corridor from the Tel Aviv area, and seeing the golden-tinged buildings of stone on the horizon. (Besides, it is less humid than where I live....)
4. I love comments on my blog. Makes me feel like someone is reading.....
5. I like the Rocky mountains. And hiking in them. The effort is well worth the reward. My awe over the vistas of the Rockies is what led me to believe that there MUST be a G-d. And since all this comes with my Mother’s smile, it can’t be beat!
6. When coming in from the heat (the day before yesterday my DD told me that the humidity was 90%!!), a big glass of diet coke with lemon, and a fan. (Who has an air conditioner? I think I am the last soul in this town without one....)
7. A good book with a cup of Aroma (mild) coffee .......

Three of the seven list drinks. Guess it’s the fast! Hope all of you who are fasting, have an easy and meaningful one!
I am tagging also:(forgive me! Only if you want!)
Nad-ned
the Jewish side (babysitter)
FAB
DownsyndromeNewMamma

Tishe B'Av

To those fasting: have an easy fast!

The Barbie-veil

Ricki occasionally "plays" with a Barbie-type doll, usually dressing her as a bride.

But on a recent shabbat (Saturday) she had a problem: She wanted to make a long train for the doll, but since we don't sew/use tape /glue on shabbat, she had a problem. In the end Ricki came up with a pretty ingenious solution, connecting napkins to each other, and to the doll, with rubber bands!
(Picture taken Saturday night)

“I Did it Already”

There are advantages to having a child who is “intellectually impaired”. For example, they have a MUCH harder time “pulling the wool over your eyes” then your “normal” child does.
Yesterday I had several errands to run, and wanted to get an early start. Ricki was still sleeping (“Oh, its summer and the living’s easy.....”), so I left her a note of things to do when she woke up. [She was not alone, but I didn’t want to burden the others with seeing to it that Ricki made her bed, etc.] I attached that note to her daily schedule, so that she could see that after helping around the house a bit, she would be able to watch computer.
On my return, I was greeted by an enthusiastic Ricki, waiting for me to type in the code on the computer, so that she could watch some discs.
-Uh, Ricki, you first have to clean your drawers out and sweep the floors!
- I did that already!

I looked at the dust balls under the table, and the talc dust on the bathroom floor, and realized that I had a definite advantage here. [And eventually she did the work, and got to see the computer.]

Ricki and Her Siblings (part of this post is a repeat)

There is a fundamental difference between Ricki’s siblings and myself. On a certain level, I agreed to this challenge (continued pregnancies after age 35, did not give her up for adoption, etc.). Ricki’s siblings did not. Having a special-needs sibling was thrust on them, without their asking.
Perhaps that is one of the reasons that they cut her a bit less slack than I do. Or perhaps it is due to the normal “sibling” relationships: a sibling is perhaps one’s best friend, yet he is simultaneously a competitor for your parent’s time, energy, and money.
In any case, Ricki’s siblings are simultaneously proud of her, and her achievements, and exasperated beyond end with her idiosyncrasies and misbehaviors. For example, Ricki’s sister joined her sister-in-law and me to attend Ricki’s graduation event, an hours-long event that surely tried her patience. But she is equally quick to notice any misbehavior or shenanigans on her sister’s part. (Which is OK by me.)
Here are my
RULES FOR SIBLINGS
1. Be open about the existence of the disability. Don’t make it into a tragedy, but definitely don’t hide it or pretend that it doesn’t exist. Kids are aware of their parents moods, and besides, wouldn’t you like to have them hear about the disability from you (with your upbeat attitude), and not from the neighbors?
2. Allow the sibling (at any age) to:
-be upset with the diagnosis
-complain about you being busy
-complain about their sibling’s bad behavior
AND LISTEN!!!!
3. Try and find time to do stuff together, fun things- both with and without the special-needs child
4 .Remember that you are the caregiver. You chose to have or keep this child. Siblings can help, as they need to help in any household, but they are not our slaves, nor are they the main caregiver. They have their own lives. And if they don’t want to do a certain activity with their sibling (like take them to the park) because of embarrassment, drop it. Have them help with regular household things. I have had kids who wanted/ didn’t want to take Ricki along with them to various places, and I respected their feelings. I believe that the NON FORCING was the best way for them to come and accept their obligations and opportunities (to help their sibling) with love.
5. If you buy lots of stuff (needed stuff, even) for the sibling, occasionally buy for the sibling something for HIM. I think I wrote about the following incident once, but I can’t find the previous post (and Ricki’s sibling is breathing down my neck, wants the computer already….). So I will, it seems to be needed, repeat: Once Ricki’s brother that is only two years older than her (and has borne probably the most flack from her diagnosis), came to me and said: “You know, I saw the most stupendous toy that you should buy for Ricki. It is really very educational.” Thank- G-d I saw what he really wanted, and said, “No, I don’t think it is good for Ricki. But I think that I want to buy it for YOU.” His big grin showed me that I had been right on target.

“When Are You Going to Sleep?”

Ricki has a problem. And it is fast becoming one for me as well. She does not like to go to sleep unless she is sure that I am at home, and will stay there as well.
Now often I am on the computer (which is in her room) around her bedtime, which suits her fine. And amazingly, on shabbas (Friday evening-Saturday), when she knows that I will not be using the computer, yet I AM home, she does fine. But if I go out in the evening, 95% of the time I will find her wide awake on my return, even if the hour is late.
In an effort to break this bad habit, I have tried lately to do my computer work earlier, and work around the house when she is to fall asleep. But so far that has only led to incessant questioning:
When are you going to sleep?
What are you going to do now?
When will you go to sleep?

Time will tell if the new earlier computing time will help. Although obviously the big problem is her lack of calm if I go out. I think I need to again invest in a flashlight for her to keep in bed to frighten off the dark spirits......

The WALK in Jerusalem

Wednesday, afternoon, when I wanted to go from the house of son number 3 to my oldest son’s house, the choice was obviously clear to me. After sitting most of the day, I was ready to get some “steps” in, by walking the distance, an easy choice as the walk is only about a 30 minute one, and most of it is downhill
Suddenly, in the middle of the walk, I received a frantic phone call from my oldest. He had apparently called his brother to see when I would be arriving at their house, and had been informed that I was on the way already- by foot.
“How in the world can you do such a thing?” he sputtered. “Such a long walk, and in this HEAT!?! I don’t want you to arrive here exhausted.”
I smiled. 30 minutes is not a long walk for me today, and as for the heat? Well, as I told my son “Right now it is cooler in Jerusalem (and far less humid) than at home at even 5 am.” So I walked, and I loved the stroll down the streets of the holy city.

A “Real” Grandmother

Ricki at the “Kotel” (wailing wall) at night.(You can barely make out a few of the massive stones in the upper left corner.)


On Wednesday, I spent most of the day in Jerusalem, along with Ricki, visiting (some of) my grandchildren, including my newest almost-one-month old granddaughter. I hadn’t paid her mother a visit since the birth (see what a bad MIL I am?), nor seen the newborn. On Wednesday I finally had the chance to do so. And since I was in the city, I went to visit my oldest son and his family as well. To top off the day, Ricki and I went in the evening to pray at the “Kotel” (the wailing wall),which is the last remaining retaining wall of the Temple Mount build by king Herod. I haven’t been to the Kotel for a while, and it was very appropriate to go on Wednesday as it was the first day of the Hebrew month of AV [the month in which the Temple was burnt, and the month we mourn its destruction].
As usual, I disd the normal “grandma” things: brought gifts, ohhed and awed over school notebooks, etc. but at one point I noticed that my oldest grandson looked VERY bored.
An idea was born. And I asked his mother if she would mind if I took him to the Kotel with me. She didn’t mind, so M.L. joined Ricki and I on our excursion to the holy site. Mind you, the high point of his trip was the bus ride, since we were on an extra-long “accordion” buses. But that’s beside the point. The real point is I saw a need, and I helped take care of it. Like a real Savta (grandma).

Brothers at War

I have always stressed to my children the importance of peace within the family... not to get into minor feuds that can develop into the years-long-cold-war that I have witnessed in many families. To that end I have encouraged them to overlook each other’s differences in religious observance, personality quirks, etc. “Your siblings are your greatest asset!” I would intone, “When you REALLY need help, it is usually siblings who will help, not friends.”
And I have been pretty successful in this endeavor. ( for an example, see HERE.) Until now.
“I am going to get you! I will crush you!” Yit. said to N. over the phone.

But that didn’t disturb me.
It was only a game.

Just as my older sons enjoyed competitive “monopoly” games years ago, Yit. And N. were playing a game. But they were busy “killing” each other. With the amazing technology available today, you can not only play “war games” on computer, you can play against other, real people the same war games on-line. [I am NOT recommending this, and it is NOT normal(Chareidi) Orthodox Jewish behavior.] And they had purposely pitted them selves against each other. [And no, they didn’t want outside help. When Yit. Complained to N. that his “friend” (cyber teammate) was “killing” Yit. Too often, N. went and eliminated his teammate.] And N. was really ahead, much to Yit.’s frustration. What made the whole situation interesting was that concurrently with the computer screen, they were talking on the phone. Which made it really like a game of monopoly--- there was the verbal interactions between them.
[So if you try to get me early Monday mourning on the phone, and can’t get through, that’s why. Not only teenage daughters can tie up the phone....]

So the technology is mind-boggling.
And the fights between brothers? As old as man.

(But I still don’t like these computer games. Not a Jewish outlook to have fun “killing”.)

"Tomarow I’ll Get it Right...”

I went to a sale which was advertised as having things for speech therapists, but almost everything was for working at kindergarten level. However, I did suddenly notice a floor puzzle, shaped as a globe. “What a perfect way to reinforce all the geography Ricki has learned” was my reaction, and a sale was made.
I realized that it might be a bit difficult for Ricki the first time or two, and resolved to help her the first time.
However, after making supper, I saw Ricki sprawled out on the floor, working on the globe-picture. She was having difficulty, and had started putting the pieces back in the box. I explained that she was capable of doing the puzzle, and just maybe needed help the first time or two.
“Tomorrow I will get it right!” she declared, in an enthusiastic, confident voice.


And she did. I ran a few errands the next morning, and on my return, Ricki proudly showed me the finished puzzle, and she has done it twice more since then.....

Another Shopping Story

Sunday afternoon I had some shopping and errands to do....and with no one else at home, I had to take Ricki along. Half-way along she asked me to buy her a drink, and I told her “We’ll see. And only if you really behave.” (She had a bottle of water. The only reason I considered is that we are low on empty bottles....) In the previous store I had already gotten a bit upset with Ricki, as she had asked the sales lady for a gift of her pen, which the stupid idiotic lady gave her above my murmured protestations. But I had quickly decided to let it go rather than make an all-out scene in the store, as Ricki had at least ASKED.
In the next store, a photo shop, she took some papers that were not hers, and I made her return them. About five minutes after we left the store, I realized that she had put a permanent marker pen from the store in her bag. Back we went. The pen was returned, and Ricki muttered an apology that surely she did not mean at all.
I informed Ricki that she had lost her chance for a bottled drink. So, much as I suspected, she started screaming “I’m thirsty!” (And of course all the people walking by wondered why this mean mother was denying basic necessities to her daughter.) That tactic didn’t work, so she started pushing me, twisting my arm, etc. That also didn’t work very well for Ricki; I continued walking home.
So she was told at home exactly what she did wrong, and what her consequences are.

She will learn that it doesn’t pay.
She will learn.
(Although she pushed me only for a minute or so, not “all the way to the bus stop” as last time. I can see that there WAS improvement.)

I just wish, for once, that she would learn a bit faster.

“Mommy, You Just GOTTA Come See This!”

I’ve mentioned before that there is a nice lady who comes once a week to do crafts with Ricki. This last week they made paper flowers to insert into a decorated jar (who is trying to pass himself off as a vase).
The final touch was a muddy-looking paint which, as the teacher explained to Ricki, would turn gold colored as it dried. The teacher reiterated her plea not to touch the glitter, and Ricki amazingly did not touch it, and soon became involved in other pursuits.
Suddenly I heard an exclamation from Ricki.

“Mommy, you just HAVE to come see this!”
As I entered the living room, Ricki was beaming. “Look, it DID turn a gold color!”
And it had. But what impressed me was her lovely sentences.

“Baal Tashchit” – Wasting (and the “Waster”)

We have a lovely commandment in the Bible : “Baal Tashchit” (don’t waste, don’t ruin things). To put it mildly, this mitzvah (commandment) is not Ricki’s forte. Whenever Ricki realizes that someone is going to catch her doing something forbidden (like drinking soft drinks during the week, eating 2 soya patties instead of one), her present way of coping is to toss the incriminating evidence down the drain or out of the window. Never mind that someone else could use it, or even she, at an appropriate time....
But Friday she really outdid herself. I was out of the house doing some walking, and my husband was resting. As I came home I found the sidewalk littered with about 10 pieces of soya (10 non-meat cutlets), eat with a bite in it.
After climbing the stairs (and roaring at Ricki), the truth emerged.
Tami
Shevi
Ruti
Sarah
Gitty
(etc.)
(all of whom are “imaginary friends” of Ricki) were wholly responsible, it had nothing to do with HER. Not only did I not “buy” that line, but when I said that they were all getting kicked out by me, Ricki laughed, knowing that they are not for real.....
Believe me, the punishment she received was real, and not imaginary......

Tracking my steps!

I have been logging my daily steps on "walker tracker" (see button on side bar).(Encouraging comments welcome!) At the same time I have been participating in Treppenwalk there. Funny what pride can do for you. I went out and walked on Friday evening and early Shabbas morning only due to pride. Anyway, I may not make 10,000 a day, but it is a H_ll of a lot better than what I used to do! (And a top that didn't really fit well 6 weeks ago now does! (I discovered this when searching for something cool enough to go out in the scorching sun with!)

I Wish

I wish my day had an hour or two more than everyone elses. I mean, I just am not getting done all that needs doing.
I want to write
...read
...sew
...teach Ricki
...cook with Ricki
...do exercise walks
....fold the laundry the day it exits the dryer
...keep my house spotless

.... and a zillion other things.
Its hard to pick and choose, because I want to do everything.

BUT at least I feel more energetic as I exercise more and eat less.
But I could still do with a few more hours.....

“You Must have trouble with Her in Stores”

I went to Ricki’s doctor yesterday to pick up her prescription for Concerta. I mentioned casually that I am traveling to America for three weeks.
-“With Ricki?”
-“Yes, of course. I couldn’t dump her on my daughter in laws!” (For a day or two, maybe. Not for three weeks...)
-“But how will you manage?!?!” (Keep in mind here that he WAS being fair. Ricki does all sorts of manipulative behaviors half the time that we go there, trying to wield out some balloons from the doctor....)
-“Well, I managed last time, two years ago!”
-“But you must have trouble with her in stores...”
-“Well, I did last time, but two years have passed, and I have been working on her behavior.” (I’m not sure he believes me on that.....) So I proceeded to tell him a story from my last shopping excursion with Ricki. [Which I am tempted to “save” for tomorrow, but heck, I’ll tell you now anyway...]
I was in the grocery supermarket with Ricki, and we were reaching the end of the buy. I had agreed already to her request to buy a cassette tape, so when she came to me with the request to buy a ready-made pudding desert with whipped cream topping, I said “No”.
So she promptly tried to stick the perishable pudding onto the shelf of pickles by which I was standing, rather than track back to the refrigerator.
-“Ricki, put it back in the FRIDGE.”
So she takes the desert, turns around, and asks the man next to us if he would put it back.
-“Ricki, YOU are putting it back, not the man.” (Simultaneously wiggling my finger “NO” to the man, who looked like he was going to comply. A bystander offered to return it for Ricki, and I almost yelled at him, but just hissed “Mister, this is for her education!” So Ricki started walking in the direction of the fridge, and reached on the way a sweet young couple who had obviously heard the earlier exchange, because the wife smiled at me as she refused Ricki’s pleading that she return the container to the fridge. After that Ricki finally put it back.
“So you see, Dr. S_____”, I concluded, “she did NOT beg me for the desert, she knew that my ‘No’ is a ‘no’. And she put it back fairly quickly.* She is making progress, because I am working on her behavior.”
-“As it should be...”

*[I did NOT add that she did not fall on the floor, open packages of food, etc, etc - things that we used to have to deal with in the past—to maintain the illusion that I am a better mother than I am....(Cheshire grin....)]

Cool Easy Drink

Last Shabbos (Sat.)the kids were drinking a bottled lower-sugar drink, called "Lemon-Nanna" (mint). I had a smidgen of a taste--and liked it.
Ican make that! And I did.
Take one good bunch of mint (I use the specially grown "buggless" variety), wash it and rinse. Put in a saucepan with enough water to barely cover the mint.Bring to a hard boil, cover, turn down the heat and simmer for 20 minutes. Let cool. Then remove the mint leaves (squeezing them to get the juice out). Squeeze several lemons (5-6?) and add the juice to the mint-water. Re3frigerate this concentrate.
To make a liter and a half of drink. Fill a bottle nearly full with water. Using a funnel add:
1 teasoon sugar (for the whole bottle)
2 teasoons liquid sweetner
a bit of the concentrate.

Refrigerate!
Even in the frigerator, this goes off rather quickly. Better to do this recipe in thirds (or fourths) unless you have a REAL crowd around.

“This is Ricki’s ‘increased responsibility..... ?!??!?”

One of my readers happens to come to my English books “library”. Today she arrived to exchange books, as Ricki was entering the salon with a heaoing plate of pasta---her SECOND helping.
I told her to put the food back into the pot. She balked at that, but when I threatened “No computer”, she acquiesced.
“Oh, this is the new increased responsibility Ricki’s been showing?!?” quizzed my friend.
And we both laughed.
But if course, these things are always gradual, with ups and downs.....
The important thing is to notice the changes.

She’s Growing Up....Or She’s Bored

Ricki seems to be growing up. At least a little bit. Over the last two weeks I’ve noticed her doing a lot more around the house, on her own. Several times she has taken down the trash, swept the floor, and put the vegetable buy away. So it would seem that she is learning to take on more responsibility.
Either that, or with school out (and Mommy busy...), she is simply so bored that even chores look inviting!
PS. She decided she would rather go grocery shopping rather than watch computer! And, she behaved very well 95% of the time, and only mild problems the other 5%. I guess she IS growing up!

The Libstick-Blush

A few weeks ago I was busy working on something. I was definitely involved, and wasn’t paying attention to Ricki. At one point I remember thinking “She looks a wreck", but plugging on with whatever I was doing.
Suddenly I took a GOOD look at her, and realized that she had lipstick on, and some type of blush all over her face. A lot. I immediately thought she had shot my whole supply of makeup (I use rarely), but a quick check showed that this was not the case. I quickly located the tubes of gloss in her drawers, and set them aside. And of course I told Miss “Prom Queen” to wash the mess off.
“Where did you get this from?!?”
“Dunno”
A quick invertory of the neighbors got me no closer to revealing the origins of the two tubes, which are still languishing by my telephone. This incident was near the end of her stealing spree, so I am assuming that she swiped it off a shelf when I wasn’t looking. And now I don’t know to whom to make restitutions. GRUMBLE. I don’t like owing someone money. I don’t like this at all.....

Being an Example vs. Lip-service

Over the last several days I have seen a definite change in Ricki, and other family members have also noticed it. Previously, Ricki has been able to proclaim “politically correct” statements about food serving sizes, eating healthy, etc., but only VERY rarely has she acted on them. Lately that has been changing. It is not 100% (as if any of us practice what we preach 100% of the time.....), but she has made significant changes over the last few days. While she did over –eat bread at one meal on Shabbas (sabath), she had normal servings for the remainder of the meals. And she made herself a very healthy supper the other evening.
And the reason is not hard to figure out. It all relates to what I wrote Friday morning about the shoe saleswoman. I have been exercising and eating healthily, consistently for a while now. I often mention that I WANT to eat something, but am forgoing it because it is not healthy. In other words, I am SHOWING THROUGH MY ACTIONS that I really believe all that talk about eating healthy, and choosing to be pro-active in this.
I think it is sinking in. GOOD!

The Adoptive Parents vs “Sainthood”

The other day as I was commenting (educating/defending/advocating) on another blog, something caught my eye. Something I have wanted to comment on for a LONG time. But I wanted to let my ideas percolate a bit... but now I think I am ready to serve you the “coffee”.

Just to give you an idea about what I am going to be talking about, these are comments written on an article about a wonderful couple who have several children with Down syndrome:
•About this guy with special needs children:
Are these his biological children?
If yes, that means he and his wife knew that something was wrong with their genetic codes after the first kid. Yet, they still decided to have more kids.
Or perhaps him and his wife adopted special needs kids.
That I can really admire.
Whoops, I missed the key paragraph saying all but one of the kids is adopted.

And to give you another example... Years ago I was at a program given at a local university, about using music with young children with Down syndrome. Each parent there introduced themselves. As one father mentioned that his child was adopted, all the natural mothers oo-ed and awed “Kol HaCvod!” (“Oh, you are to be admired!”). [On the spot I got up and told all the other Mothers: “Why are you ooing and awing? I don’t want to diminish what he is doing, but why are you reacting as if he is so much greater than you?!? Did you not choose to keep your child? Not to abort or give away? Do you not have to deal with this child, without the veneration of society? Why are you selling your own worth short?”
I suspect that the “natural” moms reacted that way because as a society, we have been trained to react so. But why is this? Which brings us back to the first example.
I have seen several examples recently of the same type of reaction. The adoptive parent is a hero, a saint, a person to be admired. The natural parent is blamed for not aborting/preventing the birth. [I remember vividly the doctor who asked me after Ricki’s birth “Why at your age did you not do an amnio?!?” My response: “I do not believe in murdering people who are not perfect.”]
But why are the two responses so opposed? Are both sets of caretakers not going through the same grill of treatment schedules, doctor’s visits, etc?
The answer is easy: MONEY. One parent is costing society money, by bringing this less-than-perfect child into the world. The other is taking care of a child that would cost society money to institutionalize otherwise. So it seems that SAINTHOOD is dependent on how much money you save society. Because society does not worship G-d, but the almighty dollar. And I am afraid that we may see much more of a backlash in the years ahead, as society will begin to demand that births of the “imperfect” be prevented.
And this is a big challenge to our culture. Because where does that end? I have read recently of people criticizing someone who gave charity to a beggar on the street, because the beggar could change and not ask others for money. The giver of alms was yelled at “You are encouraging him!” At the same time, we are surrounded more and more by expectations that when you get old, it is best to pull the plug, commit suicide, or otherwise spare society the expenses of your continued existence. [We spend years building up everyone’s self esteem, and then yank it out from under them after 60 or 70...]
So the question is.... how will society decide when the dollar takes precedence over the sanctity of human life? Who will we decide is expendable? I’m not sure I want to be around in twenty years to hear the answers.

“One Day You are Going to Thank Me”

The other day I went into an orthopedic store to buy a new item, and walked out with a new pair of shoes. And they were not cheap. How did the lady there sell me the footwear? Simple. She was really convinced that having these shoes was to my advantage, and set out to show me why.
“One day you are going to thank me”, she quipped, putting the shes on my feet. She listed the benefits of the shoe, and noticed my not-so-convinced face. “What don’t you like about them? She querried.
“I feel that they are too low in the back, like as if I am falling backwards.”
“Oh, that’s no problem...” . She quickly whipped out half-inserts and fitted them into the shoes. “Now try them.”
And she looked, checked the width, etc, until she was sure that they were comfortable for me. And yes, they WERE comfortable. Very much so. And worth the price.
* * * *
So when we try to convince our children of something, we have to first REALLY believe in it ourselves. And then set out to show them that this is good for THEM. With THEIR conditions, temperament, and values.

Why Do I Bother?

Wednesday morning Ricki had a scheduled activity from 10 AM to 2 o’clock, so I took the opportunity of that impending free time to schedule a long-overdue house visit to a “fresh” mom... a mother with a new baby with Down syndrome in our city. I set up with her to arrive at 10:30, and I did go, and give her a bit of information, useful phone numbers, ideas for coping. (I am the second one to see her. At the hospital we send in a younger mother, mostly to say “Its alright to cry, but you should know that not EVERYTHING is black....”) But, that is not what this post is about.
This post is about what happened before 10:30.
I had plenty of things to do on Wednesday. Today, thursday, is a fast day for observant Jews, so I was not expecting to run errands or do heavy cleaning work today, because it is too hot here in July to run around in the sun and still fast. (I don’t mind the not eating part. It’s the lack of WATER.) And the day after the fast, Friday, is the day I get ready for Shabbas (the Sabbath)... and we have guests coming. (GRIN) So if I realistically wanted to get certain things done, Wednesday was the day. And, thank G-d, I did manage to do most of the stuff, on Wednesday evening.
What happened to those precious start-of-the-day-high-energy-hours from 8 to 10 AM?
I spent them replying to a well-intentioned, yet poorly worded article on Down syndrome in the Jewish blog-sphere. Correcting misconceptions. Protesting insensitive language. (It took so long because just as I was finishing, I inadvertently erased it, and had to start over....)
WHY DO I BOTHER? Wouldn’t it be better to let it go, and run do the dishes? My husband is sure that this is the case.
I bother because my daughter Ricki has to live in the world that is influenced by misconceptions and poor language. To my daughter it is living day-to-day with people who stare at you (do any of you have an idea what that is like, to be stared at everywhere you go?). It is living with a society where people erroneously think that you can not do anything at all. [Like the idiots who reach over to "help" when she is pouring a drink (which she can do quite well, thank you, since age two when we spent two weeks and about 12 liters of milk learning the task), the people in offices who ask me what is her name, rather than asking her, etc ad nauseum)]. And even living in a society that thinks that you are a burden, a mistake, a financial drain. Even the “Oh these kids are so sweet” remarks drive her crazy. She is not “these kids” She is Ricki. And I love her. So that’s why I bother.

Age, Feet, and Walking

Already for several days my feet have felt like lead when walking.
Years ago, just before I was pregnant with Ricki, and again about 5 years ago, I was trying to lose weight (I did, too, but gained it back...), and in an effort to do so, tried to walk at least 30 minutes a night, 3-4 times a week. I had several different “paths” that I used: sidewalks that were in good condition, gradual inclines, and no traffic lights were the points I evaluated in choosing these paths. And till today I know just how far I could get on each in 30 minutes. (Of course, if I walked consistently, I was able to stretch the path a bit further and still accomplish it in 30 minutes....)
Lately I have mostly been using a different path. Yes, it has one traffic light, but otherwise it is really an ideal path, and one that can easily accommodate additions if I want to walk for a longer period.
It used to be that sometimes my feet felt heavy at the start, but would soon recuperate and feel fine. This was the case when I started walking again regularly a month ago, as well.
But this week I upped the amount I am walking, and my feet feel like lead. I feel that I can’t walk fast. And today I took one of those old 30-minute paths, and it took 40 minutes. My knee is a bit “squeaky” as well. (Hope it holds out. 5 years ago it would sometimes “crash” for 2-3 days, very effectively limiting my walking to the minimum for the interim.) Now I DID see that my feet feel more like lead on the uphill parts, but still I know that this is not my “usual” self.
And immediately that inner voice squawks: “You’re getting older! Thought G-d didn’t notice, huh? Thought you’d never waddle slowly down the street, didn’t you?” And if that wasn’t enough, the evil inclination pipes in: “HUH! You should have lost all that weight ages ago! Now it’s too late! Soon your knee will give, you won’t be able to exercise, and you will NEVER walk fast again! And even though you are not stopping, your walking isn’t aerobic, because you are not going fast enough to huff and puff even a bit....”

Well, Mr. Yaitzer Hara (evil inclination), listen here. I don’t know HOW bad my system is. But if I shed even 40 kilo, you can BET I will fly along fast, at least faster than I am now, lugging all that weight along! Imagine if a young man would carry around (ALL day!) 40 kilo of potatoes, how slow he would go! So shut up, and tell Mr. Yaitzer TOV (good inclination), that I want him over here PRONTO.

So Mr. Good Inclination showed me that I had logged a good 4000 steps in 45 minutes, not much less than my normal 40 minutes.
But I wish my feet didn’t feel like lead. I’m still hoping I can blame it on the infernal humidity.....

Sarah Palin, Trig, and the Press

Lets face it. Our press is anything besides impartial. And they are again on a Sarah Palin frenzy.

I personally doubt that Palin has what is needed to be president, and to get my vote she would need to get more experience... which means NOT resigning middle-of-term. Also, a president has to be able to handle stress, including the press. In addition, I doubt she will ever get renominated. Political parties generally don't like losers.

Now with all that said and done, I think that the press is being horrid. Obama's children are off-limits (as they SHOULD be). Why are Sarah's not? And what is this drivel about Palin (who went out on a limb and actually said the people with retardation are valuable citizens)promoting lead in kindergarden lunches? Take a sentence that almost any mother of a special needs kid will make, and twist it, make fun of it. Try your best to bring up Trig's Down syndrome.

In my eyes, having a child with Down syndrome will not get you my vote, unearned. But it is enough to get her mocked at time and time again.There may be other reasons.. in fact, I am sure of it. But make no mistake, a lot of the hatred she is treated with is because she was willing to have, and be proud of, Trigg.

An Ideal Time for a Change

Several things are occuring in my life, which are making it an ideal time to try to make a change in the way I live, exercise, and eat.
I have known for years that one of my main stimulents to overeating is lack of sleep. But it is easy to talk about going to bed on time, and quite another thing to do it when there are things that need to be done, and NOW! Preparing materials for Ricki's studies was one of these major "must do now" things.
But now that Ricki is going into a special education placement, that big burden is off me.
In addition, my computer being on the blink has showed me just how well I canb survive without reading all the news updatews, videos, etc. A pity on the time. The radio news is much less time-consuming.
So I am hoping to get a good 6 hours (or 6 1/2)nightly, and add to that an hour to 2 hours each afternoon at the height of the summer heat. (For those of you who live in the north, realize that the tropical countries have siesta because it is DIFFICULT to do ANYTHING in the burning midday sun!)
In addition I have been exercising (though not enough), but am working to get that act together. I went walking yesterday morning at 6AM and found it quite do-able and not too hot. (Almost too hot but not.....)
My son wants me to do a by-pass surgery, and I agree that if I am not going to loose weight, the long-term risks of the surgery are less than the mortality rate without. But I look at that 2% mortality within one month and pause. After all, I had a child with Down syndrome when the likelyhood of such was about 3%. Those miniscule (and 2% is not that miniscule) risks DO happen. But I am willing to talk to a doctor and consider it.
But I still think I would rather loose without bariatric surgery. The rub is, if I will do it. I can. The question is if I am as committed, over a long time, as I need to be.

Ricki, the Family, and Hiking: Good for the Body, Good for the Soul

Two years ago I spent a month, along with Ricki, visiting my parents. This summer we again plan to spend nearly three weeks with my mother in Colorado. During my last visit my Mother and Ricki and I spent a lot of our time hiking, and I had hoped that we will all be up for a repeat.
However, whenever Ricki goes walking with me, she usually does a fair amount of complaining, so I was getting scared that she might not acquiess to much hiking. And when I mentioned to my son how I hoped his older brother, who will be joining me for a week in Colorado, will also enjoy hiking. (If for some reason my mom is too busy with other family members coming at the same time, I assumed my son would drive us over to the trails.)
"Who says Noach (the older brother) will want to go hiking?"
I looked at the younger brother rather puzzled...... NOT ENJOY HIKING?!??? Can there be such a thing?

Later I pulled out a scrap book Ricki and I had made of our previous trip. I wanted to review with her important rules:
-only eat what Mommy gives you (KOSHER food)
-no wandering off; stick with Mommy
-no bothering others

(I also added in a new one: the in-flight tele gets turned off at some point and we all go to sleep. Last time she was so enthralled with the telly she wouldn't let me sleep, and I don't want a repeat...)

So in the middle I querried her: Hey, when we go to visit Granny, you want to go walking in the mountains again?"

"YES!!"

Thats my girl. Anyone who doesn't like hiking in our family better get his geneology checked. How can one not like hiking? Its nourishment for the body and the soul.....

The Heat and Walking

(This post was originally written for Friday morning, but after reading about Rivca I could not bear to post something so unimporetant.....)

Well, the weather (I was talking about Friday) will hopefully be cooler. The last few days it has been about 30 degrees (centigrade), with humidity at about 58%! My son in San Jose has had about the same weather, but Estes park, while humid as well, was a lovely 22 degrees yesterday.
I have been attempting over the last month plus to do more walking, but quick walking in this heat was really beyond me. (Bringing Ricki's stuff home in a taxi yesterday, I asked the driver if he doesn't get more business when hot, and he said that yes he does....) So I do hope it cools down! But in the Meantime, here is a lite/serious look at waling in the heat:

1. First, move to a cool mountain town like Estes Park or Jerusalem. Baring that, a dry Arad will do.
2. Walk early in the morning or late at night (where safe to do so).
3. Put on talc before setting out to prevent chaffing.
4. Take a bottle of ice water with you.
5. Wear pure cotton, not synthetics.

So Happy walking everyone!

PS. So here's trying to take our lives a bit into our hands!

The Schedule

Today we started the day as I hope to do most of the days: with an early wakeup and a written schedule.
After the regular start-of-the-day items (medicines, prayers, breakfast, and the like) I listed several items, some of them "work" items, and some fun. They were, on purposed, interspaced, with a fun activity following chores, helping around the house (and on future occaisions, any planned study periods.
Today's first "fun" activity was to bake a cake for Shabbas (the sabbath). Ricki went to work cleaning up and sweeping her room with gusto. She did a much better job than she has ever done. She cleaned thoroughly behind her bed (aka the "trash")and the computer desk. She even managed very well to manuver the trash into the hand-held dust collecter, whilding the broom in one hand, and the collector in the other.
Making the cake was a bit harder for her, but the licking of the batter stuck within the bowl at the end was enough compensation.

Our Lives - We Need a "20-year Plan"

Well, a few hours after Google decided that I follow no blogs, it changed its mind, and my blog list reappeared. I almost wish it hadn't. Half of the blogs I follow mentioned "Bad news" at Rivka's. I went over to Rivca's blog with trepidation.
Rivca has bone cancer. In her words:

"Diagnosed with DCIS (stage ZERO breast cancer) at age 39. Three surgeries and 2 years later... I became a statistical anomaly: breast cancer mysteriously metastasized to my bones, liver and lungs.
Diagnosis: Cancer is a "chronic illness." You can live with it.
Translation: I hope to be on chemotherapy for a LONG time!"

And Rivca has (had?)a 20-year plan.: What she wants to do in the next 20 years. Her doctor, on hearing "20 years" was a bit sceptical, but... Rivca in her blog, is pretty upbeat, and seems to enjoy life, as we all should.
Well, her cancer has spread to the brain. She suddenly realized that giving herself 20 years was a REAL long shot. I can't imagine that that realization was very easy.
* * *
Now contrast that with what my poor son-in-law (the one who keeps getting into situations that most people only read about)witnessed on Wednesday. He saw (yes, unfortunately really saw the whole thing)a woman commit suicide by jumping 12 floors. [My husband, who used to work in chevra kaddisha, once told me that if teenage girls knew what they looked like after a jump, they would never do it....]
This lady , who apparently was newly divorced, decided that life wasn't worth living. May we never be in a situation that ending one's life looks tempting...I don't want to judge this lady negatively. And yet....
* * *
While there ARE miracles, and Rivca could get her 20 years, it is not likely.I hate to say it, but extreemely unlikely. I think that in such a situation one could (a little bit) hope for a miracle, but certainly not expect it. One would need to trim the list "20-year list" down and do the most important things in the first several years.
But we need to be upbeat enough to not be too caught up in our future. None of us really knows how long we have. We need to plan goals, live with an umph, as Rivca does.

And, I tell myself, wishing for a 20 year plan won't by itself make it happen. If I want to live 20 more years, I have to exercise, curb my appetite, and take my life, as much as I can... into my own hands.

And most important, we need to make our lives LIVES. An existance worth living. Where others count. Where we contribute to the world.

The Ah-HAH Moment ("I think She's Got it!")

Today Ihad to go to Ricki's school to remove from her private study area all the wonderful study aids I had put in there three years ago(and replenished, frequently since). She has been bringing some things home over the last week or so, but still we had a lot of stuff to pick up. As we were leaving the house (Ricki was coming to help), Ricki suddenly said "Wait a momment", disappeared to her room, and dashed back with her change purse.
"I have to pay for the borekas..."

The aide had told me about a week ago, that the owner of the small grocery next to the school had mentioned to her that Ricki had stolen 3 borekas (pastry) from him. I had lectured her about it, and mentioned that when we went to get her stuff from the room, we would go to the store and she would have to pay.

I had not forgotten, and thank G-d, neither had she.
But what impressed me most was her willingness to make that restitution.
I don't know if her thievery is finished, but it certainly seems that we are making headway!



I think (I HOPE!) she's got it!

Just Lovely

My computer is on the blink. I am using a son's computer to post and check email. Now this is harder than it sounds, as my computer interface is in English; his is in Hebrew. Also, all my passwords etc for various sits are written in a (now-unaccessible) file on my computer.
Now to top it all off, blogger has decider suddenly that I am not "following" any blogs. I was following a decent number, and MOST are anyway on my "favories" tab. But not on my son's.
Yes, computers are here to make our life easier.....

My Son the Soldier and the UN bluff

My basically non-combatant son drove a woman soldier and her dog to work at a check point near Shechem. Exactly when they arrived, a truck was marked as possibly being explosive by the dogs, and the soldiers on duty asked my son to help distance bystanders. The Arab bystanders wanted to pass through the checkpoint, but since there was a possible danger to their lives, my son didn't let. The people waiting in the heat (it was VERY hot yesterday)where non too happy, but a rule is a rule.
In the middle of all this three UN trucks pull up, and demand to be allowed through.
"Sorry. Its dangerous. No one goes through."
(UN soldier) "I am going to aqrrest and incarerate you!"
"Fat chance."

The UN soldiers pulled back a bit, the commander spoke on his cell phone to someone... and abruptly turnedaround and left.

The only sore point in this story is that the combatant soldiers asked my son to help them, which he obviously did readily. However he was without a weapon, and was dealing with angry Arab drivers with basically no other backup. That makes me a BIT nervous.( Nervous should be read with a yiddish accent: Noi-voss )I still question why when he goes into Arab areas he is not issued a gun. A combatant soldier will accompany him, but it does mean that his safety is really dependent on someone else. (Although that is probably often true in the army, even when you do have a weapon.

Graduation

As Ricki's class graduated last night from eighth grade, I was filled with gratitude ... and sorrow that this very profitable set-up for Ricki is coming to an end. I wrote a "bleesing" for her class's commencement. These are my thoughts:

You are standing today at the finish of eight years of work, tests, and studies. And not just math, geography, and grammer, but also the "kodesh" studies: Bible, prophets, Jewish Law. And the ultimate goal is that we should know how to live our lives as modest G-d fearing Jewish women.

Three years ago, one of the classes at this school obtained a special priveledge (as did, to a lesser extent, the other parralel classes)- the opportunity to emulate the Divine attributes, by helping one who is weaker, seeing the spark of divinity hidden in each soul, and giving of one's time, yet demanding proper behavior without excuses.
And I KNOW, it was not always easy.
But you rose to the challenge with all your heart. You did the "non-standard". You took the diamond from the dust and placed it in the crown of "girls of XXX school".
I am eaqually sure that you gained from this experience. Surely you learned that while each person has his drawbacks, he also has his good side, his talents, and his sucesses.
Every person was created in the image of G-d.
It is oh so very easy for us to label others and judge them, but we can see here that each and every person is unique, and is MUCH more than his "label" tells us about him. And here I am not speaking only of those with intellectual disabilities, but of each and every human being, even if it is the aunt we don't exactly get along with, the brother we consider "too modern", ... or even ourselves. We sometimes even catch ourselves viewing our abilities through the prisim of judgments to us by others.
Yes, we ourselves were created in the image of G-d!This means that our spritual horizons are nearly limitless. What an astounding opportunity! Yet this places upon us expectations to rise to that opportunity.
So, dear students, as you graduate, take with you this view of yourself and others, that you are all created with a divine spark within, and take with you the attibutes of kindness that you have practiced here. And may these guide you towards the future.

(After this I add a paragraph thanking the school, etc.)