Time Capsule

Several months ago, I asked everyone to comment on what they would put in a time capsule.
Unfortunately, only one person gave in an idea.
So here are mine:
1. A call-in grocery store catalogue ( so they can see that we balance “junk” and “health” foods… it seems that we buy either these or those).
2. A vial of mountain air (there probably won’t be any clean air around by then….)
3. Some recollections of the space program. I suspect that 50 years from now, we will be much more involved in oceanography, which surely has greater and more available resources for man.
4. A picture of a graveyard. (The governments will probably not allow regular burials by then, either.)
5. A picture of a person with Down syndrome. Either we will have a cure, or the government will not allow parents to continue pregnancies with this diagnosis. (Sort of like China’s one-child policy.) So people with Down syndrome will probably be very far and few between.

Gee, this list is depressing.
Again, anyone else have any better ideas?

Two Sides of a Judaica (Judaic Arts/Objects) Fair – Where as Parents do We Draw the Line?

Recently, there was a Judaic arts display in our town. The newspaper announcements of the fair made it look interesting, and I was thinking of maybe even buying some nice artwork of some type. The location and timing made attendance for me easiest as part of my way home with Ricki from her drama class on that Monday. I was a bit worried if Ricki would behave well enough to allow me to enjoy the display, but I figured that otherwise I wouldn’t end up going at all.
As we entered the hall where the fair was, Ricki made a beeline for the concessions stand in the lobby. I drug her away (after refusing a free sweet for Ricki from a saleslady), emphasizing that this trip was going to be a well-behaved one.
Entering the actual display area, we encountered a row of exquisite Torah-scroll encasings (Sephardic design). This display being light-years beyond my spending range, we just “Ohhed” and “awed”, and I attempted to move on. Ricki was however partaking from the candy bowl set out on the table, and was availing herself of the expensive color-print display booklet obviously meant for distribution to synagogue trustees who might have at their disposal the large sums needed to buy the merchandise being sold in this area. I made her put the booklet back, limited her to one candy, and we headed towards the next area.
However, Ricki already realized what this “fair” had to offer. She always went a step ahead of me, collecting brochures, business cards, and candy from each desk. And her mother, between looking at articles of Judaica (and a lot of irrelevant stuff that had no place in such a display, but that eager sellers were hawking), played “policewoman”. Small advertisements and business cards I let her keep, and candies I limited to one a booth. (The candy was hidden away after we returned home to be doled out SLOWLY.)
However, I was very much torn in two directions. On one side, I wanted and had hoped dreamed that Ricki would behave like a well-behaved young lady. And while I should have realized that this was really not going to happen, what bothered me the most was my internal debate: Should I have left her at home, knowing that she would not act 100% (although all in all, she was pretty good).... or perhaps I should relax a bit? The business people there seemed in general to be quite content to allow Ricki access to their brochures. Yet they didn’t speak “down” to her, nor did they try to prevent me from limiting her impulses for more expensive booklets or additional candy.(Only in one place did I have to demand that Ricki not be given a free $10 gift.)
The qualms and indecision I was dealing with was best seen at a booth selling vitamins. (Yes, at a Judaica fair!!???!) There they had a display decorated with several helium balloons, and when I arrived, several steps behind Ricki (here in Israel it is not as dangerous to be a few steps behind as it would be in the states....), they were giving one balloon to Ricki. I am not sure whose idea it was, but the teenage girls manning the booth were very obviously glad to bring a bit of happiness to her life.
So the query is this:
-Do I insist that she not receive the balloon, because she should neither be asking nor receiving gifts from strangers?
-Or do I realize that lots of people enjoy giving Ricki a good time, and since these were girls, the gift was of minimal value, and Ricki could do with some fun in her life... maybe I should just allow her to accept the gift graciously? Is it really that serious a crime for someone to give a special child, who has so many difficulties in her life, a special treat? Yet if I DO that, am I not condoning her non-normative behavior? [And if she ASKED for the balloon (rather than it being offered), I am only enabling her to continue to ask for handouts....?]

In the end I decided that I would let Ricki keep the balloon. I did mention that “big girls” don’t ask for gifts. But the fine line of knowing what should be done to teach normative behavior, and how much to accept non-normative behavior is a VERY TRICKY one.....

Note : This post is in lie of tomarrow morning's post; Tomarrow is the festival of Shavuot, and I will not be posting. Happy Shavuot!

Jobs

Recently I was talking with one of my sons. He had a few ideas of some business prospects. Suddenly I had an inspiration.
“You know, five or six years from now, when you’re thinking about some project, maybe you can think of a job Ricki could do for you in seven years time? You realize, that you could get tax breaks for hiring her...”
And he was receptive to the idea. And later I broached the topic with Ricki’s sister, and she also was pretty positive......
Maybe. Just Maybe.....

"How..."

Two days ago I gave Ricki the homework task of writing some sentences. Her writing tends to be hard to follow, as she is very imaginative, so when writing she goes off on wild tangents. For example, when writing she may use a word that sparks her to write about somethind else entirely! Add to that spelling errors, bad handwriting, and poor punctuation..... well, you get the idea.....
Anyway, as she was writing she suddenly piped up: "How do you spell _______?"
GRIN. She IS trying!

10,000 steps a day?

Ibought a pedometer, and signed up for the Treppenwitz 10K Challenge. I bought a pedometer and had high hopes. But I haven't managed so far, except one day, to meet the 10,000 step mark. I discovered, as others are talking about 6-8000 steps in an hour of walking, that I log maybe 3600 in the same amount of time. And my house is so crowed that a lot of my steps at home are small/sideways, and don't get counted.
And today was the worst. I didn't have time to get out... just didn't. I still hope to pick up and do more walking, but I will be happy with 7-80000 as well. And somedays will be less. But if in general I walk more, it will be worth the embarresment of being near the end of the competition.....

Try this Tuesday- Family council

This is an idea that took some time to develop, and its importance only grew on Ricki’s siblings now that she is reaching her mid-teens. First, please read THIS so I don’t have to repeat it all.
The idea is to have family members (or family/advocate friends) meet at least once yearsly to consider the following questions, and attempt to decide on interventions to be attempted. As the child enters the teen/adult years, their desires must be taken into consideration.A large part of this idea is to try and get enough people involved that it does not all fall on one person.
Now I want to share with you the actual list. It was compiled carefully, to try and be applicable to all different ages:

Status Checklist
QUESTIONS:
1. Are there any medical conditions that need attention?
-Vaccines
-Hearing test
-Thyroid test
-Heart
-Orthopedic
-Dental
-Eyes
-Psychological
-Gynecological (for adults)
-other

2. Does _________ get all the treatments/therapies that they need?

3. Is ________ in a school/work situation that:
-is good for them? (and not just “baby-sitter)
--a place that encourages _______ to progress?
-A place that maximizes _______ independence as determined by their abilities and their desires?

4. Which work/school/residential situation will __________ be in a year (or more) from now?

Place of residence:
-Is _______ happy there?-Is this place beneficial to them?-What does_______ do in their free time?

6. Are there any concerns involving transportation? Is the situation safe?

7. Does_______ have friends? Company? Community? Both “special” and “normal”?

8. Is _____ happy and in a friendly relationship with others in his/her life?
-family?
-people in their residence?
-people at school/work?
-people in community?

9. Diet/Food:
Enough? Too much? Tasty? Healthy? Safe? Does he/she have a say about food choices?

10. Does _____ have an opportunity/ desire to exercise or engage in enjoyable sport activities?

11. Are there any skills _______needs/wants to learn right now? (reading? traveling skills, hand craft, etc) How can we help _____ achieve this?

12. Is anyone hurting (physically/verbally/sexually) or threatening ____________?

13. Is _______ financial future secure? Do they need help with banking/taxes/ money management? Do they have any legal needs?

14. What are ________ dreams? Are they possible to achieve? Can we help with this?

15. How can we help ________ gain/retain a positive self-image?

16.Are _________’s spiritual needs/wants attended to?

17. Who else can we try and recruit to be a member of this support community?

The new School

Ricki went with me this morning to register at her school for next year.And, actually I was impressed. Why? Because Ricki interupted our conversation, and the principal quickly and firmly let her know that she was out of line. IE., She won't let little Miss Ricki get away with murder.

Business as Usual

Well, our city hall has messed up again. I arrived (swollen eye and all) for the placement committee meeting, only to be told by the secretary that the meeting would not be held. Why? Because I had not applied for Ricki to attend the desired school, which I had to do first.
Now a few months ago I was told to contact the school, and I did, but I was told that I should no contact them, but send the papers to Mrs. X, which I did.
OK, so someone messed up, and it wasn’t clear. But why couldn’t I have been asked by phone why I had not applied to the school, and that the needed papers were missing from Ricki’s file?

Business as usual: parent’s time just is not a commodity to be thought about or to try and save.....

Holistic Approach

As my eye started swelling on Friday, it soon became apparent that the turbulence in my ocular function was quickly affecting much of the rest of me. If I left my eye open, it teared, and the tearing quickly caused skin irritation. Closing the affected eye meant loss of depth perception, and a definitely compromised visual range. This meant that I had to be extremely careful to avoid knocking my head on the consistently-open-won’t-stay –shut kitchen cabnit door, and other various sundried dangers. My general stamina was lower, and as the swelling reached its peak, my ear lobe itched from the skin stretching.
Now I am no big proponent of “natural” medicines. I believe in treatments that have proved their ilk in double-blind studies. But the holistic approach, the knowledge that all the functions of the body are inter-related is valid.
And I am sure that this is true in the non-physical world as well. The way we treat others, smile, listen, react, will affect them, and their reaction in return affect our own psyche. Minute changes in another’s body language, not consciously noticed by us, but perceived on some level, can affect our mood.
So now as I go to wake Ricki up for her morning rush for school, I think I will try and add in an extra smile, and lower and change any negative reactions to more positive actions. Maybe it will help her school day.....

Teary eyes and swollen face...

I have a BAD eye infection (even the doctor gasped....), although it is hopefully getting better (but too slowly for my taste). The worst thing is that I REALLY don’t feel like dieting/ exercising, although I will try not to let this be an “excuse”.
Also, I would like to feel 100% for the “vaadat haSamah” (placement committee) tomorrow, but it looks like I will have to go feeling less than 100%.

Placement Committee

I have received an “invitation” to attend the meeting of the “Vaadat haSamah” (placement committee) next week, to establish Ricki’s school placement for next year. This will be the first time I am attending this meeting NOT aiming for integration, and not potentially at loggerheads with the committee. So I should be calm, serene, etc. But I am not. After years and years of having to fight tooth and nail for anything and everything connected with Ricki’s education, I am stuck. The mere words or thought of the placement committee sends my body into “fight or flight” mode......

Canine Units-Saving Lives

This is about the army unit my son is in, "Oketz" (literal translation: "sting") They talk a lot about the women soldiers, but believe me, most are men! Anyway, it is really great the way these dogs save lives!(Click the X on the advert at the bottom to read translation of the Hebrew parts.)

And perhaps more interesting is the following, which is NOT the Israeli army, but it gives you an idea what these dogs can do (its not just sniffing explosives....)

Sorry, No Hugs

Today was a first. Ricki went to school today without a hug. She was angry, and finally left the house sticking her tongue out at me.
The morning had started out very good. Yesterday evening Ricki had, for the first time in recent history, gone to bed and fallen asleep on time. So she woke up energetic and calm. She requested pancakes for breakfast and I gladly obliged, cooking them as she got dressed. We even had time to sew on three missing buttons to her school uniform.
However, as she was about to leave, I saw that she had (in addition to the hair clip on her head) three additional hair clips in her hand. I understood that she was intending to put them on as additions to her “hairdo”, and she would end up looking VERY “weird”. I wouldn’t mind her CHANGING them at school, but not to start off the day with 4 hair clips scattered on her scalp. I insisted that she return them to me, and after a bit of bickering between us, she returned two of the three. However, the third one was the clip she had tried, over my protests, to add to her hair earlier, after getting dressed. I explained why she could not wear it, offered to help her switch the present one, just not to wear two. She bitterly disagreed. She wanted her present one, and this extra one stuck on the side. I told her that Mommy does NOT ALLOW, and that my answer was final. She said OK., handed me the clip, and prepared to leave. She then asked to put the clip away. I said OK and handed it to her. At that point she went out the door, and turned for her “goodbye hug”.
Now when Ricki leaves for school, I tend to be lenient about things, simply because I need to get her out and going. But NO WAY was I going to go through the lovey-duvey goodbye hug after her disobeying AND lying to me, and I told her so. She kept insisting on the hug, the driver downstairs was honking impatiently, and I simply told my husband:
:I don’t care if she walks to school. I don’t care if she MISSES school, but she is not going to get a hug if she won’t accept my authority.”
So in the end she finally stuck out her tongue, and went off to school.

It’s a bad way to start off the day.... but a beginning to the lesson that “if you want respect, if you want favors, you have to listen to authority “.
But I miss the hug. I love this kid. But I love her enough to try and make her future a good one. And for that she needs to know that there are rules.

Wordless Wednesday

Again, another picture from our trip two years ago to Ricki's Grandparents in Colorado.
(regular post for today above)

The Changing Face of Intervention

I was in the supermarket yesterday evening with Ricki. She was pretty good, EXCEPT for picking up a (unwrapped) bread and nibbling on it. (She ate without washing her hands, not in a civilized manner, and in copious amounts..) Needless to say, when we arrived home she received “consequences” of withdrawals of various privileges.
But that’s not what I wanted to post about. I’ve noticed lately that people are LESS “accepting” of Ricki’s bad behavior. Ricki was pushing a lady in line, just a bit, and I pointed this out to her. And the woman gave her a quiet piece of her mind as well.
And while they will still often be people who “secretly” motion to me “It’s alright” if I remind Ricki not too push when she is in a line, I am seeing more people support my need to give her an education.
Are people changing? I suspect not. I am theorizing that Ricki has simply moved beyond the “cute kid” stage, so people have less tolerance for bad behavior. GOOD!

Retribution

Retribution for sins incurred (ie., “consequences” when “caught”) was what Ricki received the other day.
She loves to eat soya patties. (I ALMOST regret teaching her how to use the microwave....) I have nothing against soya. But double, triple portions are something different.
[From an earlier post: “ I once considered myself a good disciplinarian until I realized that I “spoke” clearly, but often was not alert enough (or was too busy) to properly enforce. If I tell Ricki that she can eat only one soya patty, but she sees that she can often snitch a second (or thirds or fourth) without severe consequences, she has been taught by me to try and get away with snitching.”]
Ricki has a tendency (although perhaps that is too mind a word, maybe “penchant” would be better...) to take more than one soya, hoping that I won’t notice. Well, the other evening she asked for a soya patty, and I expressly told her “one and only one”. A moment later her brother (oh, the “nastiness” of teenage brothers who squeal on you...) caught her with TWO patties, each with one bite eaten from it.
Usually I would confiscate one, and let her have the one I allowed. But in this case I had told her VERY CLEARLY that she was to have only one. I decided that the penalty for not listening must, to be effective, restrict her MORE than my original “one-patty” allowance. So we confiscated BOTH.
No Soya.
Nothing. Nada. Sum devar.

Maybe if I do this from now on, she will think twice before taking doubles.....

Ricki Doesn’t Have Down syndrome?

Well, it seems that I will have to give up Ricki’s “disability” payments. I mean we ALL “know” that kids with Down syndrome are loving, angelic , laid back... right? Well, if that is so, than my Ricki must not have Down syndrome. She proved it today.
My supposedly “angelic” girl cheated today at cards. Twice. Her older brother and I were playing, and I caught her cheating. I warned her that if she was caught cheating again, we would stop the game immediately. However, even though she was winning, a few minutes later, my son caught her claiming to not had a card he had given her just 2 hands before. We folded the game up, and she learned hopefully, that I mean what I say, and that cheating doesn’t pay.

But she couldn’t have Down syndrome (LOL), could she....????

Homework Laughs

Thursday evening Ricki and I were doing homework together.
Thursday evening I was attempting to do homework with Ricki. I had been out of the house all afternoon (attending the graduation of my step daughter from nursing school), so the homework had been pushed off by a few hours.
Ricki was not cooperating. Her Concerta had worn off already, and she was being a pest uncooperative.
Suddenly, she got into a funny mood, and started making jokes. She started purposely telling me the wrong answers to questions, but always with a word similar to the one needed. For example, “Beit Merkachet” (pharmacy) was answered in place of “Beit HaMikdash” (the TEMPLE sanctuary). I joined in the laughter. About three of four more itms like that, and she “got it out “of her system. She then was a bit better about doing homework.
It makes me think. Next time she is struggling with some studies, maybe we should take an exercise/ laugh break.....

Miss Mailman

One of Ricki’s biggest pleasures is that often, as she arrives home from school at 1:10, she is the first one to reach the mail (which arrives around noontime).
Strutting in with the self importance of the task at hand, she will start distributing the letters. Meanwhile, I am in panic.
Several of the family members are living out of the house, and their mail has to be saved. And anything not marked with a name, Ricki has a tendency to adopt as her own, meaning that I can miss important items.
But worst of all are the various things marked with my husband’s name. Almost all of these items are really for me, and my fear of missing a bill (let alone a friend’s wedding invitation) is considerable.
The problem is that anything she has to deliver to someone she can stash away in her drawers, planning to do it “later”, or she can put it somewhere where it is likely to get misplaced, blown in the wind, etc. In addition, she can take some items and simply chuck them out. (Like letters from the Down syndrome society, charity appeals, etc.)
As I write this, I am thinking of a solution. First, I have to sit down with her, and agree on the set places for each person’s mail. Secondly, I think that I should type up a letter or two for her to receive. Maybe if she gets some REAL mail, she will be less possessive about everybody else’s.

Scheming Mommy.....

Now what I am going to tell you is NOT one of my good educational techniques. It is closer to what one of the Smothers brothers used to say: “The devil made me do it....” But it was something SO hard to resist.
Ricki was in a slightly ornery mood the other day, and we were studying Jewish law, one of the points being that one should chew their food with one’s mouth closed. Ricki was just eating supper at that time, and announced: “I am eating with my mouth OPEN!!!!”
I turned to her, and commented, “You know if you want to get married, no groom will want you unless you can eat with your mouth closed....”
She PROMTLY shut her mouth, “Yeah, I can eat with my mouth closed.....”
TOLD YOU she wants to be a bride!!!