The Sneaky Snack: Part One

Tuesday morning, just before Ricki had to go downstairs to catch her ride to school, she remembered that she wanted something to eat. She had a sandwich packed to eat at 9am, but suddenly she was asking: “What in the world will I eat for BREAKFAST?”
I told Ricki, that she would have her sandwich for breakfast. And I suggested a fruit in the meantime. But she didn’t want. Then, suddenly her face lit up. “I know! I’ll go to the grocery to buy a sweet.”
Me: “Oh no you are not! One, you don’t need sweets, and two, your driver is arriving any minute and there is NO TIME to go to the grocery store!”
So Ricki went downstairs. However, as she went out the door, she said “Don’t watch me from the window, OK?”

HUGH?!? Why not? Immediately I became suspicious. I stood at the window, but one step inward, hoping that Ricki wouldn’t see me from below. I saw her exit the building, scan the window for my presence, and turn in the direction of the grocery store which is a short block away. Immediately I called her, and ran downstairs to insure that she would stay put until her ride came. As a funny aside, I realized that her intellectual impairment, for once, was an advantage for me: She was not smart enough to camouflage her errant acts effectively.

Finally.... (Special Exposure Wednesday)

Finally, a picture of Ricki with her youngest nephew!

“But We HAVE That Disc!”

During Chanukah, I took Ricki one day to a musical-type of production. As we were leaving, Ricki saw that they were selling cassette tapes and discs from previous performances. And since this group is one of the better ones, we had all but one of the plays in our sound collection at home.
Go tell Ricki that! The discs had different pictures on them from the tapes of the same play, and thus Ricki could “see” that they were selling items we don’t own.
“Yes, Ricki, we don’t have the tape, but we DO have the disc!”
“Ricki, we DO have this tape; you just never saw the outer cover....”

At least there was ONE that I could purchase, and that mollified her a bit....

The Little Things- Making Things Right

I am knitting a sweater for my new grandson, and since I knit rather slowly, it was not ready, as I had hoped, for his circumcision at 8 days old. Last night I realized that if I don’t finish it soon, the growing baby will outgrow the sweater before it is made, or soon after. So I decided to work on the sweater for several hours, and to try to nearly finish it.
However, when I picked it up, I suddenly noticed that about 6 rows down I had made a mistake, one that really ruined the lovely design. A small mistake, but never-the-less, a definite error.
So I unraveled several rows, reknitted them, and then discovered that I had started the pattern in the wrong place. This time the problem was less unsightly than before, yet visible if looked at. Again I unraveled several rows, and reknit them. So at the end, I reached the same point that I had started at, but with the errors corrected.
Knitting is like that. If you want to have a finished product worth the time invested, you need to pay attention to detail, correct small mistakes as they occur, or as soon as you notice them. Because even small errors can make the finished product unsightly.

And isn’t it the same way in real life? Very rarely do we have major nissiyonot (trials) to deal with. Usually our choices have to do with the little things.....
- Tell your child that you didn’t mean what you said; it came out wrong.
- Make that cup of hot tea in the morning for your husband, as a kindness.
-Skip that second portion of potatoes.
Yes, it is generally these little things, the things we generally don’t notice (and think that others will not praise us for....), that make up the fabric of our lives. And it is stitch by stitch, choice by choice, that determines what OUR finished product will be.... whether it be in the form of our relationships, our diet, or anything else we wish to accomplish!

The Lady’s in a Hurry!

I caught Ricki the other day coming out of the shower, wearing her (soaking wet!) bra. Now I know why her shirt often is drenched after a bath. I had thought that it was her hair, even though the hair only sometimes seemed wet enough to wet her blouse. Now I realize that sometimes she simply put the blouse on over a WET bra.
Putting on a bra is the hardest part of Ricki’s morning routine, and she apparently found a way to speed things up!

The Store Manager

As I mentioned yesterday, Ricki had dental work done on Tuesday. But since the work took just a few minutes, the anesthetic wore off quickly, and we were finished within an hour of our arrival. And since the hospital is near a certain store that I wanted to go to, I decided to stop there, Ricki in tow, on our way home.
The store is a big one, and we spent the better part of an hour there. Ricki kept wandering over to the racks containing workbooks and discs that the store had on sale. She asked me to buy her several things, and I did agree to buy one item, but Ricki accepted my “NO” as well, when I gave it. (OK., she would ask me a second time, just to make sure, but she didn’t make any scenes and gracefully put back several items.)
One of the items I purchased was a utility closet, and after paying, I went to the manager’s desk to arrange delivery of the item (I do not have a car....).
After I asked the cost of delivery, the manager said quietly “Can I ask you something?”
Me: “Yes.....”
Manager: “Who is the girl with you?” Is she your daughter?” (Ricki was a bit away, out of earshot.)
Me: “Yes, she is.”
Manager: “Is this closet for her?”
Me: “No, but it will free an older closet for her.”
Manager: “So I want to suggest that I deliver it free of charge.”
Me: “Well... maybe half-price?”
Manager (pausing)... “Don’t misunderstand me. Not out of pity. But earlier I noticed her and I was really impressed by her behavior. I wanted to offer her a gift, but I didn’t because I didn’t know how she would react.”
Me: “Well, I am VERY glad that you didn’t offer her a gift, as I would have made her refuse it. I am teaching her that she is not allowed to accept gifts from strangers.”
Manager: “I suspected as much. But I would like to give you a discount..”

And he did. And the “half-price” he quoted was, I am sure, well under 50%. Yet I agreed, because the price was enough to cover the actual cost of the delivery.

But dear reader, what struck me the most was the progress Ricki has made. If you go back to my earlier posts, like these, you’ll see that she was far from what the manager saw Tuesday morning. Eureeka!

The Fast

Tuesday, Ricki missed school because she needed to have some baby teeth pulled. The baby teeth were not falling out on their own, and Ricki’s dentist decided that we had no choice but to full three of her baby teeth so that the permanent ones could come in (and come in straight).
Ricki is too scared to undergo dental treatment without general anesthesia (we’ve tried “laughing gas” without success), so she would need to be fasting from midnight the evening before the treatment. This being the case, I asked for an 8 AM appointment, as past experience has taught me that if Ricki realizes that she is supposed to fast, she will immediately develop a terrible thirst, and it is very hard to keep her fast intact.
As Ricki was putting on her coat to go with me to the hospital dental clinic, she asked “Where’s my drink?” I explained that since she was going to get anesthetic, she needed to fast. I told her that drinking and eating before anesthetic is very dangerous.
“Oh. OK.”
Gee, my daughter is growing up! (But I will still ask for an 8:00 am appointment next time. Once is no proof for the next time.....)

Another view of the lovely Colorado landscape!

The Sassy Teen

Well, the other day I think I finally met a young adult with Down syndrome who is as self-assured yet temperamental as Ricki is. I was at a short study day regarding Down syndrome, and on the way home by bus I was joined by a mother and her 20 year-old son. He was bragging about which car he wanted to buy (but when I asked him where he would get the money, he didn't answer). HE WAS DRESSED VERY NEATLY AND LOOKED OH SO CONFIDENT. THE INITIAL IMPRESSION HE MADE WAS IMPRESSIVE. But slowly I noticed things that I did not like so much. His mother paid his fare (at 20 I would expect him to have his own bus card), and he seemed a bit aggressive. He stood in the aisle swinging a stick rather than sitting. Suddenly Ricki started looking SO much more grown up in my eyes.
To make a long story short, maturity doesn’t happen by itself. You need to educate and work on behavior, being consistent. THERE ARE NO SHORT-CUTS!

"Did you Come to Buy?"

The other day I had several errands to run, and it being Chanukah break, Ricki went with me. She was, it seems, a bit bored, and interested that I should get her something.
Managing her in the post office and pharmacy was not all that hard, but our last stop was a small “five and ten” type of store, where I had popped in to buy a vegetable knife.
This store is one that is packed to the ceilings and with crowded isles. One can barely move in it. So ALL sorts of fascinating toys and trinkets were dangling in front of Ricki’s eyes, and she did not hesitate to request their purchase.
I refused, having warned Ricki in advance that we were only buying a knife in this store. She tried again, simultaneously effectively blocking my access to the drawer where the knives were.
Back and forth we discussed/fought. Ricki insisting that I buy her something, and me calmly repeating that I was NOT purchasing her anything here.
After a minute of this (and not more), the owner asked if I had come in to purchase something or not. If there had been another store within a few minutes walk that carried the knives, I would have left, but instead I just answered, “Yes, when my daughter lets me get to the drawer.” SHESH! His store was empty. Am I really the only customer that tells their kids “NO”? Probably not. But when a tiny 3 or 4 year old does this, you can walk around them. When a hefty Ricki is standing her ground, it is a different matter.
In the end, Ricki gave up, I bought the knife, and we let, trinket-less, towards home.

Soya and "Vitamins"

Ricki has a definite problem with food. That is not surprising, as most of us have issues with overeating, and one can hardly expect her to do better than the rest of us. Yet sometimes the utter absurdity of her cravings absolutely floors me.
Her main cravings are for soya patties and bread. Thus, I have demanded that she ask prior permission before cooking soya patties, but she tries to sneak them anyway on the side. The other day I caught her with THREE patties, and needless to say, she got more than a “tsk-tsk”, but an immediate closure of the computer (which she was viewing a disc on).
And the day before that as I sat down to eat my supper at 9 pm, Ricki groanded that she had “not had supper yet”. This despite having eaten a soya patty with THREE slices of bread an hour before……
So, in the meantime, everytime I want to eat more, and don’t, I mention aloud that I want more, but am NOT taking, because I “choose to eat healthy”. Maybe that will help. But maybe not. In the meantime, whatever Ricki wants to eat has “vitamins”, and whatever she doesn’t want is “fattening”.

The “Queen” of the Park

[ Note to Americans: Today was Shabbas in our town. There is no traffic, and the parks are filled with mothers and children. It is much safer than sending a child outside in America. ]
There is a children’s park about a block from our house, which I sometimes let Ricki go to on her own on Saturday, as long as it is an hour when I know that the park will be full of mothers and families. So today, when I went to lay down for a nap, bored Ricki asked me for permission to go. I eyed the bag of sand toys she had packed, and explained to her that sand toys are inappropriate for someone age 15. So she gathered her large several-girls-can-jump-together length of jump rope. It was 1:30 pm.
-Ricki, I want you back here by 2:30. Ask a mother there the time, and when she says 2:15 or 2:30, come home.
She agreed, and went off happily.
Well, 2:30 came and went (as I knew it would. In real terms I expected her back at 3:00). At 3:15 I walked over to the park to see if she was there. (If not, I would have gone to check at her best friend’s house.) I was not really worried, assuming that she would be home soon, yet decided to check out on my own anyway. [I know from experience that Ricki doesn’t go wandering around, only to places that she knows, but she can go to a friend without notifying me. I am trying to keep an eye on what she does without smothering her. And shabbas is the only day that she really has the opportunity to go to a friend on her own. (Sometimes it is hard to know where to draw the line between being a responsible parent and encouraging independence.)]
Well, I found Miss Ricki sitting on a bench, surrounded by a bunch of younger girls, one of whom I overheard saying “XXXX went to get you some juice.”
Yes, Miss Ricki was obviously sitting court, getting waited on hand and foot. Well, I broke that up FAST, telling Ricki that if she wanted juice she could jolly well walk the 5 minutes to our house and get it herself.
Guess who will be going to the park next week as chaperone…….

Ricki and My Vaccine

I took Ricki to be vaccinated against swine flu a good two months ago, as she is considered high-risk. [Individuals with Down syndrome are high-risk even if they have no heart or weight problems, due to their narrow respiratory passages and their impaired immune system.] However, I was not able to get the vaccine until yesterday.
I had set up an early morning appointment, because I was planning mid-morning to take Ricki to a play in honor of Chanukah. A few minutes before leaving the house, Ricki expressed a desire to join me, apparently not wanting to stay home with nothing to do. So I agreed. On reaching the bottom of our stairs, I suddenly realized that it was a bit later than I had thought, and that we would have to walk quite quickly in order to arrive on time. Si I urged Ricki to speed up, and when she didn’t, I walked ahead of her. This had the desired effect within a minute, as Ricki ran to catch up.
Reaching the clinic, they were amazingly organized and received me on time. Then Ricki insisted on holding my hand, so that I shouldn’t be scared.
-“But I’m not scared….”
But Ricki was seemingly reveling in the role of being the “support” figure, so I let her.
Later, as we headed towards home, Ricki suddenly got the “BIG GIRL” bug. Rather than walk with me, she ran ahead some 30 strides, and constantly checked to see that I wasn’t catching up on her. (I confess that at one point I took a short cut just to peeve her, to discover that I was a bit closer………….)
At home I told her that big girls can also walk with their Moms; I had missed her company. And even though she agreed with me, I doubt that it will do any good…..
But I find the contrast of “hurry-to-catch-up”/hand holding/run ahead rather interesting, don’t you?

Ricki’s Friend Meggie

Ricki goes to a weekly “chug” (club) with several other intellectually impaired teens and young adults. (All have Down syndrome except for one, Meggie. Meggie had multiple problems, including a crooked back.)
Last week Meggie. died of swine flue. Most of the girls in the club don’t seem to really understand, but Ricki does. Having lost her grandfather last year (and seeing in our visit in the summer that he was no longer present) seems to have made the reality of death more concrete for her.
Meggie was not a high functioning young adult, but she always had a smile and was very friendly. She used to disturb me when I was trying to get some paperwork done during club hours, with her many comments and questions. Now I miss her.
Please get vaccinated against this flue. Please.

A Laundry Story

Ricki: -“Mom, I put my clothing in the laundry.”
Me to myself: Oh, GREAT ! Not on the floor. But did she put each color in the right basket (darks and lights separate)? “Oh, let me see!”

I SHOULD HAVE KNOWN BETTER.

I arrived in the washroom to discover that Ricki had taken out the half-dry laundry from the dryer, sticking it into a basket, and had put her dirty clothes in the dryer, turning it on.

And she was SO proud of herself.

I deserve that for not teaching her more about laundry earlier.....

Nobody Can Fix Your Life for You

The last week and a half I had been slowly slipping off my diet a bit here and there. And what worried me the most about that was the fear, well-founded, that unchecked this slight deviance would become a major backsliding and going off the diet.
Finally, after a week or so of continued slight over-indulgences, I said “ENOUGH!”, and started again to carefully monitor my intake, and return to my walking (which had also gone down). I decided that it was up to me to to take charge of the situation.
The next day, after not having opened “The Thin Book 2”* for a week, I opened it up. She wrote about taking responsibility for your choices, adding:
“Nobody can fix your life for you.”
Well, isn’t it true! I don’t care what diet group you are in, the ultimate determination of whether you stick to your diet is the choices that you make.

PS What was my reward? Yesterday I saw someone who hadn’t seen me since the summer, and she NOTICED the change. (At long last! Someone noticed!)

The Late-Night Excursion

Friday night, as an exhausting week drew to a close, I was more than tired. As it happened, we had some company for the evening seudah (meal). Nevertheless, since shabbas (the Sabbath) starts early in the winter, after our guests left it was still pretty early. For once, I did not go out walking, but opted for the more prudent choice after such a hectic week: I went to sleep. Ricki was still wide awake, and wanted to go out and play. I warned her that to do so was dangerous, and that I did not allow her out the front door. So she took several books out to read, and I went off to catch up on some sleep.
A few minutes later my husband woke me: “Where’s Ricki?”
He had searched the house, and she was not home. A glance out the window showed us that she was sitting alone outside in the windy weather. Needless to say, she was called home, “caught hell”, and sent to bed. But a telling-off was not all. On Saturday morning and noon I made her eat alone by herself in the kitchen, away from the family. Because I know that wagging a “tisc-tisc” finger at her is not enough. She needs some feel-it-in-your-guts consequences.
And next week I better stay up and go walking.......

A ceramic Chanukkiah (Hanukah Menorah)

This menorah has seven "broken" jugs of oil, and an intact one (far left). And I made it! When I showed it to my son (who I was giving it to, I explained the jugs, and he asked "Where did you get it?"
-My ceramics class....
-YYOOUU made it?!!!!!?

Yup, I did! (Grin)

Happy Chanukkah!

Tonight starts channukah, so I would like to refer you all to the presentation I made last year (see HERE). I hope it's good enough to enjoy for a second time around...

Ricki’s First Independent Bus Ride- part 2

It was all set up for Ricki to be picked up by her music teacher after her regular afternoon activities by the new music teacher (rather than coming home in a group car), to study music, be escorted to the bus, and then ride the bus home alone. But then a wrench got thrown into the plan: the driver who was to take her to the regular afternoon program brought Ricki home by mistake. And there was NO way that I was going to walk her over in the pouring rain (especially since I had a cold). So I cancelled the music lesson. We agreed that if possible, she would do the whole plan on Tuesday.
On Tuesday morning, I told Ricki that she MIGHT have music, and if so, the teacher would pick her up. [A note here: it is possible that I did not make it clear that the teacher would pick her up from the afternoon program. I DID mention it, but since last year her music teacher picked her up from our house, I did not emphasis the change enough to register.]
Well, from the moment that Ricki arrived at her afternoon program, she told the staff that she has to “go to music”. And somehow, some way, she got out of the locked doors and ran away. And took the bus home, alone. She walked in the house almost crowing with happiness: “I rode the bus by myself!!!”
Yes, she certainly did.
I’m proud/angry/exasperated/ all at once, and have to say that I am not surprised one bit.....

Ricki’s First Independent Bus Ride- part 1

For several years now I have let Ricki sit by herself on the bus (ie, separate from me), and for about a year she has been handling (on and off) her own ticket. However, I have never let her ride the bus entirely alone. This is because I always feared that she might not manage alone on the bus is something out of the ordinary happened. However, as Ricki is supposed to start with a new music teacher next week, and it is most convenient to let her ride the bus alone, I decided to take the plunge.
With this in mind, I sat down with Ricki last week and spoke to her about various situations that could arise on the bus.
-What if a boy stole your bus ticket?
-What if you miss your stop?
-What if a boy touches you?
-What if the bus stops for a bomb scare or changes its route?

We spoke about solutions , and I felt that she is reasonably ready.
So we planned that when Ricki starts music, she will be picked up by the teacher, and she will return home alone by bus.
(to be continued)

“All by Myself”???

Ricki’s school teaches their students to sew, and their first project was a simple skirt. Earlier in the year Ricki had brought home a piece of scrap cloth with razor-straight rows of machine stitching on it, and she told me that she had sewn the rows herself. I was impressed. I was expecting, however, that the eventual product would not be so nice. But perhaps rather sloppy work (especially since “sewing” is the only class Ricki complains about not liking).
Well, this week the skirt finally arrived home, and it was beautiful. I realized that even if she received extensive help in making the garment, the goals of work on coordination, fine motor movement, working on a task to completion, and pride in her work were all still completed. I am sure that as she gains experience in sewing, the hands-on help will be less, and she will slowly gain a certain level of proficiency.
Also recently Ricki brought home a craft article (see yesterday’s post HERE), and I was unable to know exactly how much help had been given (although I suspect that it was only guidance, and not hands-on work). This school does not go in for “babysitting” type of projects.
The problem is not limited to special-education students. One also gets children coming home from kindergarten with art projects that leaves the parent wondering “How much of this did my child actually do?” Parents claim that they want the artwork coming home to be the product of their child’s hands, yet the teacher who can send home nice projects is obviously a step ahead publicity–wise than the one who send home only pages of scribbling. The trick is to find projects that the child can do which still look reasonably nice. (And are within one’s budget....) But a quick trip to your local crafts store will show you that today this is not so hard. Yesterday I was in a local craft shop, and the number of easy yet nice-looking projects were plentiful. I bought two stencils of Chanukah-related designs and for my grandchildren, precut wooden dreidels (tops) ready to be painted. I passed on the ready-to-be-painted wooden menorahs (candlesticks), which being of wood I hope are meant only for decoration and not for use. The store also carried pre-cut sponges to stamp-paint menorahs, candles, and dreidels. In addition I already have at home a cookie-cutter in a dreidel shape, in two sizes, one of which I set aside to use to cut play-dough with.
So was it “all by myself”? Still often a puzzle.....

Magic Marker Monday - Kever Rachel

This is an appliquéd picture of the tomb of Rachel, which she made in school. The school takes great pains that the art projects they do should be ones befitting teens, and not childish, which I think is GREAT!

for more of "magic marker monday" go HERE

One of My Proudest Moments....

My eldest daughter is the sibling who has, over the years, seemed to feel most negatively about Ricki. Part of this was undoubtedly due to the fact that she had been the most excited about the idea that she would have a sister (my other children are all male), and the disappointment of Ricki’s diagnosis hit her very hard. She did not take Ricki to functions where one is expected to bring a younger sister, and took, instead, her niece. (And I never made an issue of this.) As a teenager, she swore up and down that when SHE got married, she would do all the pre-natal testing in the world. So when she got pregnant I purposely did not ask her about whether she had done a triple screen, as I preferred not to know the answer.
Then last night, in the delivery ward, they asked my oldest daughter why she hadn’t done a triple screen. She looked the doctor in the eye and said:
“Doctor, I have a fifteen year old sister who has Down syndrome. I love her dearly. I can not imagine for one minute what my life would be like if my mother had chosen not to have her.”
Incredible!

Mazel Tov!

I have several things I wanted to blog about, but they will have to wait. Thank G-d my daughter gave birth last night to a (healthy) baby boy, and since I was up all night I think I will have to go to sleep.....
[All my other grandchildren are from daughters-in law (ie., I was not at the birth), so this is the first grandchild that I was at the birth for. What excitement!]
The funny thing is that Ricki refuses to believe that her sister could actually be a mother!

UPDATE Saturday night, 5th December

It turns out that my soldier son has changed his mind about Gilad Shalit. (See post a few days back.) He says that the released terrorists are not likely, having tasted prison, to return to actively doing terrorists attacks. And the Arabs are ANYWAY going to capture soldiers if they can. But if they can hope for a big swap the MIGHT not lynch the soldier.
This problem is too big for my head. I am uncertain what is really the correct thing to do. There is no 100% good way out of all this. But we ALL agreed that as long as the Arabs do not allow their prisoners to see the red cross or family members, the prisoners we hold should be denied family visits, and let their families put a bit of pressure on the Hamas and Palestinian authority.

The NICE Sweater

This week I bought myself a NICE sweater. Now I havea perfectly good sweater, but I bought this second one because I like it, and I do NOT like my previous one.
So if you ask "So why did you buy it?" , the answer is simple. When I bought it, this sweater was the only one I could find that fit me. Imagine only coosing clothing for its fit, and buying what you don't like.....
Of course, my present choice is also pretty limited, and it was a matter of luck that I liked it. (Except for the buttons, which I can change.
I am waiting for the day that I will have the option of going into almost any store , and search for what I REALLY like!

A (Bad Mood) Conversation With Ricki

Ricki was in a bad mood the other night, due to my insistence that she carry out some responsibilities. This is a conversation we had.
Ricki: I’m sad.
Me : (silence)
R: I’m angry.
Me: That’s OK, you can be angry...
R: Oh common! REALLY! (eye roll)
M: I’m sorry, but I have to educate you.
PAUSE
R: Don’t speak to me.
The phone rings. I answer, speak a few minutes to one of my married sons, and hang up.
R: Who was that?
M: Your brother YL
What did he want?
M: I thought you didn’t want to speak with me.
R: NNUUUUU (Oh, really, come on......)

I had some trouble keeping a straight face there at the end......

Getting Old?????

Yesterday was my birthday, and I am amazed to find myself at 58! When I was a teen, I thought that 30 was "adult", and "40" middle-aged, and "sixty" was pretty old. Well, when I hit 30-40-50.... I kept redefining my definitions.Its not that I think "old" is bad, but I don't FEEL old. In fact, as a result of my walking and weight loss, I feel younger than ever (almost... I am ignoring here my bad knees). OK. To be honest, I realize that I do not have the stamina I had at 18. But I have a lot more than I had at 45!
[Actually, a good question for discussion would be: “What is feeling ‘old’?” Our “love-youth society have perhaps led us to believe that growing old is not a positive thing, while in many ways it may be!] And in a way, I DO feel "old", in that I feel I have a vision and maturity and wisdom that most young adults have yet to gather.
But at almost-60 I am not willing to consider myself "old", rather "middle-aged" (even though some voice from within is whispering in my ear that I have undoubtedly passed the midpoint of my life span.......). I wonder what I will feel like at seventy????
And I look at the older people in my life who are WAY fitter than I am, and realize that the only real problem is not years, but how you feel!

The New Dishwasher/ The Eye Infection

No, I didn’t buy a dishwasher. And I don’t plan to. But on Friday night, Ricki INSISTED on collecting and washing the dirty dishes and she did a VERY good job at it! (I think I can “blame” this on her new school)If you think I can laize around now, Ricki told me Saturday morning that "You can do the dishes...."
* * * * *
Sunday morning I was called to pick up Ricki from school because her “terrible eye infection is dangerous to the other students.” I apologized, saying that I hadn’t noticed any infection, and would come right away. To make a long story short, she had a substiturte teacher, and Ricki told her that her eye hurt, and from a distance it “looked red”. Well, after Ricki had gathered all her stuff to come home, I asked her to let me see her eye, to determine how fast I needed to get her to a doctor.
Well, the eye wasn’t red, not outside, and not inside. I left her at school and breathed a thanks to G-d that the substitute is not her regular teacher......

Emotional Insanity

I am sure that “emotional insanity” is not in the dictionary. But it exists, and unfortunately it seems that our government (Israeli) has fallen prey to it.
I would love to see Gilad Shalit released. I can not even imagine in my darkest dreams the nightmare that his family is enduring and has endured over the last three years. I doubt that there is a Jew in the country who does not feel, emotionally, that it is time for him to return home. And that emotional wish has led us to an insanity.
It takes no big brain to see what the swapping of a thousand terrorists, many with blood on their hands, will result in:
-encouraging further kidnappings
-encouraging more murders (even if you’re caught, you get set free eventually)
- a hero’s welcome and venerating of the released murderers, furthering the cult of worship of the Jihad....
- strengthening of the extremists among the Arabs, for “winning” again

I am sorry, but the price is just too high.
It is a shame that at the time of the kidnapping, some sanctions were not placed on the area to pressure for Gilad Shalit’s return. It is a sorry world that if we would place sanctions on the Arabs now, the world would see us only as the villain. Perhaps we should, for once, ignore the “nice” Western world that doesn’t care a damn about Shalit, and pressure the Arabs through sanctions anyway. I don’t know. But I do know that 1000 for 1 is emotional insanity.

UPDATE Saturday night, 5th December
It turns out that my soldier son has changed his mind. He says that the released terrorists are not likely, having tasted prison, to return to actively doing terrorists attacks. And the Arabs are ANYWAY going to capture soldiers if they can. But if they can hope for a big swap the MIGHT not lynch the soldier.
This problem is too big for my head. I am uncertain what is really the correct thing to do. There is no 100% good way out of all this. But we ALL agreed that as long as the Arabs do not allow their prisoners to see the red cross or family members, the prisoners we hold should be denied family visits, and let their families put a bit of pressure on the Hamas and Palestinian authority.

“I’ll Make Sure MY Riki is Not Like That.....”

How many times have I heard about a problem other parents have with older children (and young adults) with Down, and so self-confidently thought to myself “I won’t let Ricki fall into that rut. I’ll make sure to teach her in such a way that she won’t do this.”
I guess I thought I was so much smarter than these other parents, and that my access to good educational practices would ensure that I succeed where they didn’t.
Well, I was in for a rude surprise. Ricki sometimes dresses with her door open, and often sticks stubbornly to a wrong and stupid idea. Both of these are things that I once thought would NEVER happen in our home. I AM working on these things, but the realization that I can not wish away bad behavior, but it takes real hard work (and a good plan) is a difficult pill to swallow. Sometimes the realization that her mind just ISN’T working properly, and that her impaired ability to reason sensibly has consequences is a blow. At THAT time, one has to work on accepting and loving your child despite their limitations. (Although that does NOT mean abandoning your educational efforts of behavior plans, etc.)

Miss Little “Thinks-she’s-Independent”

With all that I love Ricki, and am so proud of her achievements, there are those moments and times that her behavior and attitude are downright frustrating. And it is this lack of predictability that is in many ways the most disabling part of her condition.
Ricki is generally “clean” (toilet-wise), and those rare occasions that she wets herself are invariably at home, not in public. (This shows that she cares, and makes a bigger effort outside.) Any clean-up she does herself, and usually I am not aware of any problem until I find the extra laundry waiting for me in the middle of the day. She has a harder time with bedwetting (we are a family of DEEP sleepers), partly due to her refusal to limit (or even cut down on) her drink intake in the evening. But she really takes care of all the cleanup and bathing on her own.
Last night I tried to reason with her not to have a full glass of fluid immediately before bedtime, but she refused. I made the mistake of trying to grab the drink from her, and we had a real fight. [Just as with ANY teen, you will find it VERY difficult to force them to do anything. You have to reason with them, give consequences, etc.]
Well, this morning Ricki was DIRTY when she awoke. Maybe she did it on purpose, because she was angry, I don’t know. But she did NOT have time to do the cleanup all by herself, or she would miss her ride to school, so I helped her. [And yes, I fell for the trap of giving her lots of negative attention, when I should have shut up. I have never claimed infallibility.....]
So what was her reaction to all this? When going down to meet the ride, I urged her to hurry, or she would miss it.
“Go upstairs, and I’ll go down.” Miss Little “Thinks-she’s-Independent” pride would not leave her alone. I guess she needed to prove to herself that she is “big” after all. Not surprising for a teen.....

The Value of Time (2)

My son’s comments really got me to thinking. I wonder if G-d is not looking down at me and saying to himself, “Oh, what a waste of time......” about so many activities(see last night’s post) in my life. Up to this year I was extremely busy preparing study materials for Ricki, and now I do that much less. So I should be wallowing in time, but I am not. I spend a lot of time online, as well as a good hour daily out walking, on the average. The walking is for my health and is not a waste of time. Much of my computer time was.
So I have been making a concerted effort to spend less time watching all those interesting (yet SO unimportant) videos on the news and posted by friends. I limit the time I spend online. I try to catch up with the news by radio as I do housework. Yes, I miss certain things. But choices on how one spends their time is imperative. Today I “wasted” an hour talking with a friend. But THAT is important. And I believe that my blog is too, since I am blogging from a much different perspective than most parents of children with Down syndrome (as there are very few blogs written by parents of older children). But somewhere one has to limit themselves when it comes to pastimes, whether it be reading, movies, computer time, or anything else. It all needs to be BALANCED. But of course, it is easier said than done.

The Real Soldier and the War Games- The Value of Time

Two of my sons are hooked on a computer/internet war game. Their brother, D., who is between them in age, is an Israeli soldier.
D. came home on leave today, and discovered his two siblings on the computer. He leaned over, and whispered in my ear “I also think it’s stupid and a waste of time......” With that he took his books and went upstairs to study for his matriculation tests, which he is slowly taking in preparation for college.
Yes, the army has taught him that life is not a game. He knows how to relax, and have fun, like everyone else. But he is able, much more than his siblings, to weigh the value of his time.

Cherishing a Life

Picture: Ricki and my faher two years ago.

My Dad died a year ago today. On one hand, I feel very keenly the length of this year. Perhaps it feels long because I had not seen my father for the year and a half preceding his death. And besides, there is that part of me that almost denies that he is gone. But all in all, I do not feel sadness over his passing, but rather a cherishing of the time and life that we shared on planet earth.
My father introduced me to the wonders of G-d’s world (though HE would never have included G-d in this). We shared walks around the local lake in the autumn, multihued leaves spread all around us, and the same walk along with my Collie in the foot-high snow. We shared the trek to the summit of Long’s Peak, from where we could see the face of the land extending all around. Our many summers in the Rockies gave me memories of stands of birch, majestic waterfalls, and boulders set along the trail. For a few years I was my Dad’s “diving partner”. We Scuba dived in the Florida Keys, experiencing the largely unviewed beauty of the coral reefs, and the delicate exquisite beauty of a sea shell.
* * * * * *
On my recent visit to Colorado, I saw an ad for hot springs in Colorado, and was a bit sorry that I would miss the opportunity to visit such a spring. I remember how the family visited such a pool more than once in my childhood, and I had thoroughly enjoyed the experience. However, today I would never visit a mixed-sex bathing pool, so visiting the hot springs was out of the question. So imagine my surprise when my city sponsored a chance to visit a hot springs in Israel (I didn’t know we had any, thinking that the mud baths of the Dead Sea were the closet thing here......). So a few days ago I relaxed in the warm waters of a thermal spring, remembering the wide range of opportunities that my father gave me, and thanking G-d for this wondrous world.

A Walking Story

Today rain was predicted for the afternoon, so I got out nice and early to beat the rain drops and get in most of my 10,000 steps before it became cold/wet/slippery. And it just so happened that I was a bit tired of all my regular routes, so I struck out towards the outskirts of our suburb, even though doing this would put me into an area that I normally avoid, due to the high traffic on that street and the resulting car fumes.
So as I was walking along at a good clip, who do I see coming in my direction but my friend who made a Bar mitzvah last week who had exclaimed “WHAT? A diet!” ?
She gave me a HUGE grin, said “Hey, you’re WALKING! Good for You!”
If she doubted me before, I am sure she doesn’t now!

The “Nosh” Escapade

“Nosh” is Hebrew-Israeli slang for “goodies”, candy, cookies, and the like. We generally don’t have any in the house. Occasionally we buy a bit for shabbas, but not as a rule. There is only one event that invariably calls for purchasing of snack foods: a school trip.
Now I don’t remember taking hordes of snack foods on school trips as a child, but Israeli kids do. And while I am loathe to support such nonsense, I allow my kids to take some unhealthy snacks on school trips, but I try and limit it to a reasonable amount.
So when Ricki came bouncing through the door yesterday afternoon with the announcement that she has a school trip today, I reluctantly gave her permission to go to the grocery store to buy some empty calories.
-“A LOT of sweets! ________ (a classmate) said so!”
-"Ricki , I allow you to purchase 2 SMALL snacks. No more.”
The only problem was that this conversation was held only minutes before I left the house for the entire evening. She would go to the mini market on her own......

I returned at 11:00 PM yesterday evening to discover a $20 purchase (76 shekels) of some six Family-size bags of Bamba (a puffed snack), and eight large bars of luxury chocolate. And Ricki was (thank G-d) already asleep. I’m afraid that one very disappointed child will be setting out on that trip today.......

The “Phone War” Escalates

Round two of the “phone war”: Tonight, at 10:45 PM, as I was trying to get Ricki into bed, I saw her grab my phone book (from which she always copies her friends phone numbers), and the portable phone.
-Ricki, you are NOT making any phone calls!
-Just a short call to Ruchi.
-Ruchi is ASLEEP! And YOU should ALSO be so!! Go brush your teeth.
[Ricki starts looking the number up.]
-Give me that phone book, and go brush your teeth!
[Ricki ignores me. As I try to get the phone from her, she dodges around to the other side of the table, and keeps staying opposite to me as I move.
Now at this point I should have calmly thought of a consequence, or gone to call help, calmly, but I didn’t.]
[I turn off the electricity. This has a dual purpose. Ricki can not use the phone, and also sees I mean business. It also brings her exasperated older brother ,(i.e., the cavalry backup troops) who now has torn himself away from the temporarily darkened computer screen. I had called him earlier, but he didn’t hear me.]
Ricki’s brother: “WHY IN THE WORLD DID YOU DO THAT?”
-“Ricki is dodging me, standing on the other side of the table. Grab the phone from her!”
[He grabs the phone and hisses at his sibling, “If you don’t listen to Mommy, you will hear about it from me!”
15 minutes later she was sound asleep. [Partly due to her brother’s intervention, and even more due to my (once I could reach Ricki) putting the phone book WELL out of her reach.]
I think I should have handled it better.... Just not sure exactly how yet......

The Phone Conversation

It was Saturday evening, and I had several things that I wanted Ricki to do. But SHE was on the phone. She had also hogged the phone for about an hour on Friday; talking on the phone has become a favored pastime of Ricki’s. But this call was different. She wasn’t talking to her friend, but rather to her friend’s MOTHER. And it was an extended conversation at that. Now Ricki knows the mothers of two of her classmates, but not this mother. But somehow either Ricki had “hit it off” with this woman, or the lady was simply curious about Ricki. It perplexed me a bit.
However, Ricki was holding her side of the conversation very well, telling this woman who was absent on Friday from school, what Ricki wanted of her daughter, etc. But I anyway drew a line after about ten minutes. After all, Ricki DID have things that needed doing. As most teen girls do......

The Wheeler-Dealer

Wednesday evening I had to take Ricki to get her H1N1 flue vaccination, and afterwards I scurried over with her to our local dental x-rays outlet. Ricki’s dentist asked for the x-rays, and the two locations are very close to each other. Not wanting to make the trip twice, I hurried over as soon as we had completed out 20-minute post-vaccine wait at the health care clinic.
When we arrived, I discovered to my great pleasure that not only had we beat the “arrive by 6:30 PM at the latest” deadline, but the place had no other customers. (I don’t begrudge them their business, but I was glad not to have to wait....)
The fact that there were no other customers meant that the staff there had more time to deal with Ricki, who was looking rather warily at this “I’ve- never-done-this-before” contraption. In the end, Ricki agreed to make the test, but only after wresting from me a promise for popcorn and a soft drink. [She could out-bid a “shuk” seller (open-air market dealer) as well as the best of them....] And she deserved the snacks, because she really kept pretty still as the camera circled around her head for a panoramic film. She only moved a bit once and the film is a BIT fuzzy- but I hope that it is clear enough for what the dentist needs to check: if (and where) there are teeth that have not yet erupted.

Update

UPDATE: It appears that the new drug (IF proven safe, and IF it works) would be more beneficial for the young, helping them cognitively, as well as helping older individuals against the cognitive decline of Alzheimer's. If it will help adults with Down syndrome IMPROVE their learning ability is questionable, and we will have to wait and see if there will be any possitive affects in this area. So I may not have a Miss van Winkle in several years. Instead perhaps the "Last of the Mohicans".....

Breaking News : Rip van Winkle in the Making?

Breaking news is that there may soon ("soon" probably means several years) be a treatment, or partial treatment for Down syndrome, as well as a vaccine for Alzheimer’s, probably sooner. The vaccine is surely good news, if it will remove or reduce the chance of Ricki and others with Down syndrome from getting the disease.
The Treatment for the intellectual disability of Down syndrome is of course much more controversial. As a mother with a teenager with Down syndrome, I always wonder at those who would not accept a cure. Parents state that they fear that treatment might change their child's personality. My reply to this is that my "normal" kids changed too as they hit the teen years; I love them no less. And if being cured would make life SO much easier for my daughter, what type of parent am I if I refuse to treat her for my selfish reasons?!??
[I suspect that many of that 60% who claim that they would not accept a cure will change their mind if a treatment ever becomes a reality.]
The medicines to treat Down syndrome are probably several years away, which for us may be a bit late. I am trying to imagine Ricki as an a adult with a suddenly functioning mind, but with a fraction of her needed education. Such a “Rip van Winkle” state would require very careful and gentle handling, and would be much easier if Ricki's self-esteem would be in a good state to begin with. The possibility simultaneously excites me and scares me to death.

UPDATE: It appears that the new drug (IF proven safe, and IF it works) would be more beneficial for the young, helping them cognitively, as well as helping older individuals against the cognitive decline of Alzheimer's. If it will help adults with Down syndrome IMPROVE their learning ability is questionable, and we will have to wait and see if there will be any possitive affects in this area. So I may not have a Miss van Winkle in several years. Instead perhaps the "Last of the Mohicans".....

I Wish I Had a Picture

“Tzippe”, the sister of the bar-mitzvah celebrant, was dressed in the same dress as all her other sisters: a layered, three tiered grey skirt, and a jet-black top. She leaned back slightly, slidding one foot ever so slightly forward, and clicked the shutter. Quickly she glimpsed at the screen to study the result.
“Oh,it’s good...”, she commented, smiling quickly. She raised the camera for another shot.
A typical 14 year old girl. A typical 14 year old who happens to have Down syndrome. She doesn’t know me, so I explained that I am Ricki’s mother, the Ricki who is the “new girl” in her “group” at an afternoon program.
“You know, Tzippe, Ricki also like photography”
At that, Tzippy smiled. (And so did I!)

(Continuation from the day before Yesterday) And Knowing when Not To (Keep Your Mouth Shut) 2

Overlooking wrongs done to you is one thing when done to promote family cohesiveness. It is another if it leads to encouraging bullying and the like. If someone is consistently wronging you, careless with your possessions, then I am not in favor of “forgive and forget”. When someone recently took possession of a piece of furniture that I had loaned them, using it NOT as I had agreed to, than I DID speak up. Also, it is important to stand up for your children’s rights.
The other day, I was speaking to a family member, and they needed a scrap of paper to write something down. They grabbed a small sheet that Ricki had in front of her, and Ricki protested: “That’s mine!”
“Return it,” I told that family member, “it IS hers. She won’t respect your rights if you don’t respect HERS.”

(Continuation from Yesterday) And Knowing when Not To (Keep Your Mouth Shut)

I was at a Bar-Mitzva. Now for those of you who don’t know, you do two things at a Bar Mitzvah (besides giving a gift): talk and eat! So the friend whose son’s celebration I was attending fully expected me to “dig in” to the plate of food that she was offering me (at 10:30 PM, even!).
-No thanks, I am on a strict diet. No, really.
-WHAT? A diet! After eating all that cake at the retreat two weeks ago?
- WHAT cake?!? I’ll have you know I lost a kilo that week......
-Oh.... I guess you ARE on a diet. (GRIN)
[ But that didn’t stop one older lady from badgering me about “What a shame if the food goes to waste”. REALLY (eye roll). NOT my problem.

[ And actually, I DID keep my mouth shut. I explained myself, but I didn’t EAT]
One of my favorite “excuses” for not eating at someone’s celebration is to claim “Dr.’s orders”. Few argue with that....

Knowing When to Keep Your Mouth SHUT

On meeting friends whose oldest child is engaged, I tell them: “You know how to be a good Mother-in-Law: Shut your mouth and open your purse.” Well, I had to practice what I preached today, through no fault of my married children, nor their spouses. One o my married children had several items on my roof, and hired some Arabs today to take the stuff down. I was out of the house when this happened, and was not able to help oversee things.
Put simply, the hired workers were very careless, breaking several objects, including knocking my (very) precious (to me) digital picture frame to the floor. When I came home, and saw the frame in pieces on the floor, I quickly decided not to tell the young couple. THEY certainly don’t have the money to pay for it, so mentioning it would only cause the spouse of my child aggravation. So I shut up.

My reward was that I took the pieces aside, and discovered that they had come apart, but had not broken. So the frame is now working, and my married couple didn’t have the aggravation that I could have so easily caused.

Sorry there was no post today.

Just to give you an idea of how buy I was,my step-count for today was 17,361 which is the highest I have ever had in the half-year since I joined walker tracker. There should bw a post tomarrow (early Monday)

The Simple “Mentch”....and Inclusion in the Community

I was with Ricki the other day at the dentist, in an out-patient clinic of one of the Tel Aviv hospitals. This hospital, which used to be very easy to reach by bus is now a real “pain in the neck” to reach, involving two bus rides minimum.
When we entered the clinic, I saw one other parent, waiting while her young child was being treated under general anesthetic. She was a fellow “frummie” (orthodox religious Jew), and she flashed us a smile, but I got the feeling that she would have flashed a radiant face to anyone entering. In fact, I suspected that she had definitely grinned when she saw Ricki.
Within minutes, I was sure of it. The friendly lady started trying to have a conversation with my daughter. Ricki responded with a growl and a mumbled “leave me alone”. It didn’t phase this lady. She continued asking Ricki about herself, talking about her child, , what was going on in the clinic, all in an informative yet casual way. She won Ricki over within minutes, and had her hanging on the woman’s every word. She spoke to her in a mature way, not condescending at all.
At one point she asked Ricki if she knew “Miss XYZ”, who is a 25-year old woman with Down syndrome in our community. Ricki doesn’t know this woman, but apparently the woman in the clinic (who was also about 25) does. I don’t know how, but the results were clear: she was not afraid of Ricki, and communicated casually yet clearly to her. This shows so strongly the case for inclusion in schools and the community. When people get to know teens and adults with Down syndrome (because these teens and adults are NOT buried away in a “special” environment 24 hours a day), they learn to react to them as PEOPLE, without fear... with plain common sense. And that carries over to their interactions with others with disabilities.
Now I suspect that this lady is a bit more of a “mentch” ((good person) than most are. I don’t know. But I do know that I would like to see more of people like that!

AAUGH!!!!

I know that it is minor, but I have lost HOURS of time today on various things in my computer that are not working properly. Half of the internet sites I want to see are not displaying (including walker tracker), the "Blogs I am following" list is suddenly empty, and more. GRUMP!

Thanksgiving

I confess that I don’t “celebrate” Thanksgiving, just as I don’t “do” mother’s day. In my mind, mother’s day is a largely retail-market-fueled guilt trip. And the Jewish equivalent (sort of) of thanksgiving is the sukkot holiday, held earlier in the fall.
And, in actuality, we should be showing our appreciation (to G-d and to Mom) much more often than once a year. Have you told your Mom how much you love her as late?
And as for G-d, try this: every day thank G-d at least ONCE for some part of your body that is working properly, without pain. Today I am thanking Him that my knees are getting better, and hurt MUCH less. But the list is endless. Be grateful.... and see how happy that can make you!

PS Mom, no I am not a hypocrite. A nice letter is in my email "to send" file, but for some reason, the server won't send it. I will try again later......
Folks, just know that my Mom is fantastic!(Really!)

Motivation

I won’t lie. There are days that going out on a walk seems like a real trek. My feet feel like lead as I start off most days, and the amount of time it takes for my circulation to catch up varies. And my knees, while better, sometimes still hurt a bit. A twinge, but that twinge lowers my taste for walking considerably. So what motivates me to keep going?
We often think that motivation is a matter of the heart. But I feel and suspect, more and more, that true motivation comes from the mind. When it is CLEAR to you what you are gaining from walking (or dieting), and losing by not doing so, the choice becomes obvious.
The problem is, that people don’t think too hard. My once-overweight son had a t-shirt which said: “I used to think that overeating was bad for me. So I gave up thinking.” HOW TRUE. Or we lie to ourselves (and others) that it is only “one more piece”, or “just tonight”, or “tomorrow I will start”.
If one pauses and thinks, the mind must reach the correct conclusion. But it must be clear enough, sure enough, to overcome the laziness and desire for comfort that we all have. And this is the power of a group or a good diet partner. Hopefully, they help us stop lying to ourselves, and to see without error.

"But They Will Laugh at Me"

[I wouldn’t write about this, for reasons of Ricki’s privacy, but I know that this issue evokes a lot of fears in new mothers. I have purposely timed the post to not coincide with the event.]
Sometimes the shear volume of things Ricki has to learn, that I must be sure that she understands, is overwhelming. Recently Ricki had her period, and this is still somewhere under #5. It is still a new process for her, and it was the first one she would really have to handle at school. So I checked that she had pads in her school bag, and explained when she should change.
“But they (her classmates) will laugh at me!”
HUH????

So I explained that her classmates ALSO get periods, and that she doesn’t see that and know that just shows that these girls were taught to be discreet. I explained to Ricki that she could also be discreet, and that no one needed to know about it.
On her return home that day, Ricki joyously announced: “No one saw and no one knew!” BRAVO!

The Memory Keeper’s Daughter- Movie Review

Last night I had the opportunity to watch the movie “The Memory Keeper’s Daughter”. When my son asked me today if it was “worth watching”, I told him that he might enjoy watching the scenes where Krystal Nausbaum plays the teenaged Phoebe. She does a beautiful job portraying her character, who is, incidentally, a likable, believable teen with Down suyndrome.
But other than that, I found the movie rather boring and unrealistic. The doctor and his dear wife have so many problems, yet somehow ignore the possibilities of going to get help until it is too late. These two characters appear very shallow to me, and the idea that the wife has a romance with someone she has just met does not jive at all with her earlier actions. As the doctor kicks Phoebe’s (fake) gravestone, the implication is that Phoebe’s birth was the cause of all of this couple’s misery. Sorry, I’m not buying that. Their problems are from lack of communication and consideration.....Period.

Small, Slow, Changes

Sometimes I am frustrated that the slow but steady change in my weight is only being seen on the scale, and other small changes I have picked up on. (Like clothing getting looser, increased stamina.)
Then it hit me: Maybe Ricki is frustrated when we don’t notice her baby steps towards change.
The fact that I have so many fewer “terror” stories to write this year than I did a year ago (and especially two years back) makes blog-writing harder, but it shows a big change in Ricki. Tonight, after eating too much, at least she came and checked with me before digging into the soy patties for a third time.
She has so much to learn, so much to acclimate to, the task sometimes seems endless. But what often goes unnoticed are the small tiny footsteps towards maturity and adulthood.

A Tail on My Trail

I had to make a brief visit to the doctor yesterday, about a lab test I wanted him to order. I feel confident going lately, especially as I am losing weight, even though I’m not sure the good Doctor knows that this is true. (Or maybe he is afraid that this is a passing phase. After all, for YEARS I have been TALKING about losing weight.)
Anyway, I was halfway there when I realized that Ricki was trailing me.
I quess that after three days of retreat, she was afraid that I would disappear on her again.
So with no choice (if I wanted to arrive at my appointment on time), I allowed her to tag along.
But I didn’t let her come in the office with me, and I refused to buy her any drinks, etc. on the way back.
I’m just wondering how long this “desertion fear” is going to last......

I've lost Over 20 Kilo!

I've lost another 2 kilos, taking me past the minus 20 mark! YEESSHH!!!!!!!!!!!!!!!!! ("Yesh" is the Israeli slang for "WoW!, Right on! YEAH!!")

“Down syndrome Hugs”

Now, I have never believed this stereotype about people with Down syndrome being all so loving. If they hug people a lot, it is because society has trained them to do so (a rather dangerous training, too, I might add.
But Tuesday evening when I came back from a three-day retreat, Ricki was DEFINITELY the image of the cute, loveable, child. She hugged me, kissed me, and helped me with all sorts of things.
So of course on Wednesday she developed a bad case of the sniffles, a cough, and a temperature. Guess I better not plan to do too much stuff next week..... (Because for SURE I caught whatever it is that she has.....)

Special Exposure- off topic

Sorry, but for once on a wednesday I am not giving you a picture of Ricki, but rather a interesting flower-rock-fungus collection that caught my eye this last summer:

Monster face- Chapter 2

The other day,(see last Thursday's post, 30/10/09)as Ricki and I were returning from the shoe store, Ricki had strode on ahead of me a bit, a bag with her boots in one hand, and a too-big-for-one bag of popcorn in the other. Suddenly I heard a shriek, and looked up to see an elevenish year-year old girl hugging her mother in fright, as Ricki looked on, bewildered. Apparently, Ricki, being in a good mood, had offered the girl some of her popcorn, and this was the youngster’s reaction.
Moments later I caught up with Ricki, and she burst into sobs. “What happened?” she asked.
“Obviously she was scared.” Did you make a face at her?”
“NO!”
I paused. "So maybe a different day, some time in the past, you once made a face at her, and that is why she is scared.....”
But Ricki didn’t buy that explanation, and walked home a bit subdued.

I just hope the mother explained to her daughter (better late than never), that people with Down syndrome are PEOPLE.......

Monster Face –Chapter 1

Ricki has a horrific habit of making faces... a snarling, ogre-like “mask”.... when anyone looks at her. Now if she would do this to adults who stare, or even older children, I would understand. But she will snarl an angry “NU, what do you want?” at even the tinest tots who only HAPPENED to glance in her direction.
Needless to say, her draculan countenance (if she could, I am sure she would add fangs....) does little to endear her to the toddlers in question, and they invariably go crying to their mothers.
I don’t think at this rate that Ricki is going to make a good “self-advocate”.

The Rainfall

(This was written last Thursday evening)
I am sitting at my desk, by the open window. A rain drizzle has started, and a few misty drops come inside, reaching my upturned face as I glance outside. Memories of rains past, fall thundershowers from my childhood surface.
When I was a grade-schooler, we lived in a house that had a large roofed porch in the front of the house. This enabled us to stand on the porch, relishing the smell of fresh air and rain, while remaining comfortably dry, even when there was a real downpour. And until today, I love the smell of the rain, and unless it is really cold, I will leave my windows open (but blinds shut) when the fall showers come, so I can relish the freshness of G-d’s bathing of the world.
Some people dislike the rain. I love it; it energizes me, unless I am cold. And here, each drop is so precious, so needed, even the slightest drizzle leaves me feeling blessed.

The Ducks -Straight out of the Camera

This picture was taken at Biersdtadt Lake, in Rocky Mountain National Park
See more SOOC (straight out of the camera HERE.

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

Walking in the Drizzle

This morning, as I did a bit of aerobic walking in the drizzle, I couldn't help but think of this song:

However, in all seriousness, one DOES have to be careful if you are out walking quickly in the rain. Certain pavements can be very slippery, and someone who falls and breaks a leg won't get much exercise walking.....

The Teen and the Shoe Store Balloon

Wednesday I took Ricki to the shoe store to buy boots. And as soon as we finished, she looked at the balloon display (they give away balloons to young customers), and announced: “I want a balloon.”.
I promptly told her that walking out of this store with an inflated balloon in hand was not an option. She is a teen, and teens take home a prize like a pen (another prize the store offers), or settles for me to buy her a different prize elsewhere.
“But I want a balloon.”
At this point one of the saleswomen asked “What’s so bad about a balloon?” So I explained that it was a matter of knowing her self-worth and honoring her maturity. “What, will she also take a balloon home when she’s thirty?” I queried.
So then, when Ricki again said she wanted a balloon, a second mother there took up the challenge, and said: “You know, you are a big teenager. It isn’t fitting for you to go out with a balloon.”
AH-HA!
Now it was someone else, not Mommy saying that it was inappropriate. Ricki quickly acquiesced, and agreed to a prize bought elsewhere. We paid for the boots, I bought her some popcorn, and Ricki walked home, her honor intact.


For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

Hate Crimes Against Those with Disabilities

Headlines today are that Obama signed into law an addition to the hate crimes law that makes this law also cover differences in sexual orientation. But to me, the big news is what the press is only barely noting: the new addition also includes those crimes done due to a person's mental or pysical disability.YEAH!

Friends, Real Friends

I owe a big thanks to Ricki’s friends from her former school. I was afraid that they would forget her as they went a different way from her, and to a different school, and I am still sure that this will eventually happen. The question being, how long will their connection last.
In the meantime, at least, they have maintained the connection, and the last week and a half was an excellent example. First, they organized and made for Ricki a big birthday party with most of the girls from her former class. All I had to do was let Ricki go.
* * *
This last Sunday, Ricki’s best friend from her former class had a family celebration (bar mitzvah), and had called the week before to invite us. I had told her that regretfully, I had a prior obligation, and could not come. (And Ricki would obviously not be traipsing around alone at 10 PM either....)
Then on sunday afternoon, TZ., another good friend from last year called to ask if Ricki was coming to the bar mitzvah. I explained why not, and TZ interrupted me: “Rickismom, I’ll take her, if that is OK with you.”
It was, and Ricki had a great time.

Real People. Real Friends!

Special Exposure: Ricki on the Trail with Granny

I have often paged through my pictures from the summer, but usually in a "preview" format, unless something caught my eye. I overlooked this one, an excellent picture of Ricki and my mom, hiking.

The Non –Pacifist (A Post Just for Fun)

I wrote here once about how I used to be a pacifist. Well, anyone seeing me last week would never have believed it.
On morning I discovered to my horror, that my counter top was swarming with ants. The weather had been hot, and someone told me that the heat brings them out. So I annihilated the whole lot of critter crawlers. I went out not long after, and on my return, my husband mentioned a further advance wave of ants he saw exiting a hole by the faucet. (He had drowned them out....). As I entered the kitchen to investigate, I saw a whole advancing phalange of ants approaching the counter from the left. With that I unrolled the weapons of mass destruction (bug spray), and let them have it.
Followed by a thorough cleaning, an anti-ant liquid poured down cracks in the kitchen, I waged war with gusto. But I still couldn’t help wishing that they had stayed put in their wall, so I could have left them alone.
I think I’m hopelessly, absolutely, crazy!

That “Knowing Smile” – type Two

For years I’ve known that special smile: the smile shared by those traveling a similar journey. In my case this was always the smile a fellow parent of a child with Down syndrome would flash me when noticing Ricki next to me. Once as I was exiting the dental clinic of a hospital, I noticed a mother sitting with her older son with Down syndrome. I saw her glance at Ricki, and suddenly she looked up at me with a smile. I returned the grin, and went on my way. Not a word was spoken, but the connection , the fellowship, was there.
Suddenly, I have a second type of “knowing smile” in my life: that of fellow walkers. If I am out walking in the early AM, carrying only a bottle of water and a key, it takes no big brains on the part of a fellow pavement-hitting woman to figure out what I am doing in the local park at that hour. So, more often then not, she’ll slip me a smile as she wizzes past. And one morning I even met a friend of mine, who I had no idea was working on her health. BOKER TOV! (“Good morning!”)

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

The Birthday Gift

What I bought Ricki for her birthday says a lot about how I view the proper way to educate a child with intellectual impairment. And when I spoke to Ricki’s school officials about the trailing streamers incident

I mentioned my gift as an example of the attitude I want.
Many people feel that the best way to treat a special-needs child is to “make them happy”. I mean, that SOUNDS good, doesn’t it? I mean, we DO want our children to be happy.
But consider this. If you have a (“normal”) son who is failing math, and tomorrow he has a math test, do you let him go see a football game, or do you have him “hit the books”? Obviously, the second choice. Why? You want him to be happy, no? But you realize that, in the long run of his life, he needs that math to succeed and be happy. So you push him to tackle and learn the tools he needs to be a functional, successful adult.
So even though Ricki had mentioned that she would like a ball (the type little kids play with),I did not even consider buying her that. Instead I spent much more money and purchased for her a cleansing face wash, foot cream, a bowl to soak her feet in, a nice towel ,and a pumice stone. I wrapped it all up nicely, and she really enjoyed getting “a gift that suits high school girls”. Of course, that doesn’t mean that she can’t have fun. .....

TheLetter

Thursday afternoon I saw that Ricki was on the computer. She was typing away a paragraph (she had the text before her). Later I sneaked a look:
The text of the paragraph was typed well, with no mistakes.
Underneath she had added a different piece, a rambling collection of remarks praising herself, and commenting about her imaginary friend. Her she had some misspellings, but I WAS able to read it and understand.

The Little (well, not so little....) Engine That Could

Those of us who are trying to lose weight are likely to measure their journey towards a healthier life by daily or weekly weighing, steps counted, and/or body measurements. I would like to mention a fourth mode of noting progress: endurance.
I have several “walking paths” which I like, all pre-step counted. Most are arranged so that the more strenuous uphill parts are at the start, or middle, allowing me an easier downhill or flat stretch as I possibly become a bit tired. Two of them have a good long uphill stretch, the rest are more gradual. Up until this week, going up either of the uphill stretches meant pausing on the way up.
When I first started walking, these sections were definitely difficult for me. I had to pause two or three times to catch my breath. Gradually, the pauses became smaller and less frequent.
One day this past week, I did BOTH of these paths (merging the paths, which overlap). As I reached the top of the first hill, I was pleased to have made it up without a pause. Several minutes later I was halfway up the next one. It started getting a BIT difficult, so I looked at the pavement (rather than how far I had yet to go....), and chanted inside my brain (like the “little engine that could”) "I--think--I--can, I--think--I--can.".

Suddenly, more quickly than expected, I discovered that I was at the hill’s crest, and mentally marked up one more sign of progress.

The Wrong Number

As I picked up the receiver a mechanical voice emerged: “You have a collect call from ‘Bezek’ (phone company) client by the name of ‘_______’. Do you accept the charges?”. In the pause I heard a male voice, with a definitely Arab accent say what was probably “Achmad”.
Realizing that the fellow had made a mistake, I hung up, effectively refusing the charges, and turned to go back to my task at hand.
It took no more than three steps before an icy fear grasped my heart.

Twice I had read of women receiving phone calls from their husband’s terrorist kidnapers, informing them that their husbands were victims of kidnapping. In one case the husband survived, in the other the man was brutally murdered in cold blood.
The image of my son David, the soldier, flew to me, and the cold fear that he might be the next “Gilad Shalit” swept over me.
Then I suddenly brightened, and reaching for the phone, I dialed my son’s cellular phone. Within moments he answered, and after a casual “HI, how are you?”, I tried to invent a reason for calling at that (busy) time of day.
“Mom, what’s up?”, my perceptive fellow asked.
So I explained his paranoid mom’s fears, adding “You know, that’s just the way Moms are.....”
At least he is safe.
I wish Gilad Shalit was.

Sorry!

UPDATE: Will post, but a bit later.

Skipping today- was too tired yesterday evening to write, and not enough time today!
You might want to read a "golden Oldie" Post:
"A Good Week"

Special Exposure Wednesday: Golden Oldie

This is Ricki when she was almost 5 years old.

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

For more of "special exposure" go HERE

Teen with the Trailing Streamers

Today Ricki came home from school, after a school party, flamboyant red crepe paper streamers tied to her wrists, and a helium balloon as well. I understand that they wanted to girls to have fun. But WHY should she be allowed outside of the school doors (IF you have to give balloons to 15 and 17 year-olds at all....), decked out in a way suitable for a five-year old?
[When Ricki graduated from eighth grade a few months back, they also wore streamers at the song and dance production, but ALL the students took off the streamers before leaving the building. (Admittedly Ricki took hers off only due to verbal arm-twisting on my part....)]
I will have to speak to the teacher about this. We need to promote in Ricki and her classmates the attitude that they have the appearance, responsibilities, and maturity of their fellow teens. They are NOT little girls in a big body, but teens with an intellectual disability. There IS a difference.

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

Suddenly, She’s Telling

For years, Ricki’s answers to “What happened in school today has been “I doknow...” (don’t know). But lately that has changed. The other day I sat down with her, with the class schedule in hand, asking her what went on today in “X” class. And she told me.... subject after subject. So the nexst day I tried again, and AGAIN she told me.
In addition, she has taken over responsibility to prepare her school bag each afternoon with the correct notebooks for the marrow.
The responsibility has been placed on her, and she picked it up, completely. PROGRESS!

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

Balance

Well, my walking the last week has been nothing remarkable (in the 5000 range, and I try to be in the 7000 range at least), so I am going to have to try and make more time for walking. BUT I am not willing to do so (to reach 8500 instead of 7500) at the detriment to so many other things I want to do... so we'll see how it goes. Less computer time would do it, so I can start there I guess.
I think that as much as we love to mark up walking steps, the bottom line means finding a balance of correct eating and exercise that we can LIVE with for the REST OF OUR LIVES. I am not dieting; I am making a lifestyle change.

Fifteen

Fifteen is an important number, Jewishly. There are 15 Psalms of Ascent (120-134). Passover falls on the 15th of the Hebrew month of Nisan, and Sukkot on the fifteenth of Tishrey.
Fifteen is also Ricki’s age as of today; today is her birthday on the Hebrew calander.
HAPPY BIRTHDAY RICKI!
(My G-d, she is growing up FAST!!)

Traffic lights

Today I got out EARLY 5:45-6:45, mostly in order to beat the heat that comes with the sunlight. It was definitely pleasant, enough that I am (slightly) tempted to try and do it daily (at least while our current heat wave lasts). Here in our town there are no cars on Saturday day (except ambulances), and one doesn't even have to deal with traffic lights. So it was a real enjoyable walk.
A note on traffic lights. This summer, when I visited my Mom, I noted with humor her insistence that a certain traffic light always had her stopping. I pointed out that since she was coming from a side street to a main one, and the drive up was long, she would invariably see a red light at some time in her approach.
Well, the traffic light I usually need to use when walking a certain route, is also a side street crossing a major thoroughfare. It is green from my direction only about one fifth of the time. So, theoretically, it should be green one fifth of the times I arrive, NO?? Well, once it was, and twice I have “sprinted” and made it. That leaves about 40 times that it was red.... [Actually, I solve this by walking downhill on the main street, and turning back after a bit. I have the timing pretty well done, and haven’t missed the crossing this way. Thus I can cross at this light without stopping, and breaking my aerobic walk.]
What’s really funny about all this, though, is how easy it is to “determine” that someone is against us. So remember your traffic light next time you think your friend/neighbor/ family member has wronged you, and try and give them the benefit of the doubt.

Barbie’s Ankle Weights/ The Profit World is Made for “Normal” People

Being Convinced that I need to get some muscle- strengthening exercises into my weekly routine (not that I found TIME for it yet...), I trekked over to the nearest sports store to buy some accessories. I bought an rubber resistance-type band and a pair of one-half kilo ankle weights. As an afterthought, I decided to buy some dumbbells. I tried the one kilo pair, but decided that they were too light, and bought 2 two-kilo weights.
On my arrival home, I dumped all the items on the table, and decided that it would be real smart to wear the ankle weights a bit around the house in the evening. But when I tried to wear them, I discovered that they were WAY too small. (Maybe they would fit an anorexic. But not my ankles.) So they are in temporary storage, waiting for the day that I get thin enough to wear them.
The world is quickly becoming a place for only “normal” people. Manufacturers, caring only about profit, aim for the size that most people are. Most firms don’t even made XL size. Left-handed people are also often overlooked. If you are smaller, shorter, taller, or fatter, it’s just too bad. Buy (and pay) for larger shoes, custom made. Sew your clothing.
---And if you don’t have the money, or time, or know-how, that’s just too bad.

I saw on the news today that a 120 lb. model was fired for being “too fat”. Soon we’ll have to be anorexic, just to have the “privilege” of purchasing clothing.....

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

Now You See Them, Now You Don’t

Ricki came home without her eyeglasses Tuesday afternoon. Now this was a real problem, as her spare pair was misplaced somewhere in Colorado in the summer, when visiting grandmother. After grilling Ricki for information, we discovered that because she was “tired”, she put her glasses in her school bag. The problem was that the small pocket of the school bag had an unfastened cover. The glasses fell out either in school, on the way to her ride, in the taxi home, or between the street and our house.
The search was on.....
-called the driver
-called the teacher
--checked downstairs

Today she came back from school, eyeglasses perched on her nose. They were found. Where? I don’t know, but what’s important is that they WERE found.

That’s $150 saved. (WEW!)

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

Special Exposure Wednesday: The Real Trooper (Hiker)

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

The Diet Pottery

This week I did something I have always dreamed of. I joined a ceramics class. I remember vividly how much I enjoyed ceramics in art class as a child, and the fascination I have for pottery has never faded.
But I was always too busy.
Or it cost too much.

But I decided that if I am cutting the “fun” of overeating out of my life, I have to substitute something else “fun”.
I decided that for once I can do something for myself. I expect that within 4-5 years all of the children except for Ricki will be living elsewhere. NOW is the time to invest in avoiding the “empty nest” syndrome.

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

The Grocery Store Bandit

(this photo was done at photofunia)
Those of you familiar with this blog are probably already smiling at my title. And even though I am serious, I don’t blame you.
Sunday, being the day immediately after the week of holidays, Ricki still didn’t have school. So when she got up, I had already been to the grocery store. But she was in a “purchasing” mood. She wrote out a list, and told me that she wanted to go to the store.

Her list: (my comments in parenthesis)
-1 milk
-eggs
-one candy (guess for whom?)
-one small bottle of drink (again, she wanted this for herself)
-3 borekas (a salty pastry, calorie loaded)(THREE! Yikes! Again, she wanted this for herself)
-Soup nuts
-croutons

Well, I obviously vetoed this shopping spree.
The problem is, that she went out the door anyway.
I yelled a consequence as she was going down.
I phoned the store to ask them to refuse to ring the purchase up.

In the end, she ate borekas there, and received a very large consequence during the day.
She kept begging me to cancel the punishment, but I didn’t. Such Chutzpah I am NOT going to tolerate.....

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE