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.......