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!