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!!!

Lag B'Omer- Special Exposure

[I wish that this photo could be better, but that's the way it worked out! Hopefully I'll have something better next week.....]

Well, yesterday was Lag B'Omer. Years ago, I used to walk around the neighborhood, breathing in smoke (which I hate). Now I have it easy.

The synagogue downstairs always makes a bonfire. So I close ALL my windows, except that on the (closed) porch off my kitchen, and Ricki watches from there. She can sing at the top of her lungs for the whole hour that they celebrate downstairs, and it disturbs no one. (Because downstairs they play music, sing, and dance, and they are LOUDER than she is....)
Here you can see Ricki's back at the right of the photo. She was having a GREAT time!
PS The fire is seen from three floors above, and they arrange it very safely, in a metal conainer on stilts (so kids can't reach it), and then they arrange a barrier all around. Whenever I see the lag b'omer bonfires, I am reminded of the fires of the auto-de-fe from the inquisition.....and the strength of spirit that outlasted them!

Small Country.....

Israel is a small country. Very small. From my area (purple dot) to Jerusalem (red dot), the drive is only an hour plus if the traffic is good. To Safed in the north is about 4 hours (roads are less good, etc....). Much of the country is easily reachable by missiles from the Palestinian territories. That's the bad part. Maybe one of the reasons the Israeli army is so good is because we really don't have much of anywhare to run to....
The good thing about our size? Our soldier sons can show up at home unexpectedly, and often. Just tonight my son called and asked if his younger brother was home.
-"He's asleep...."
-"Well... Maybe you can help me..."
What he wanted was for me to look up tomarrow's bus schuedule for the line that runs near his base to this direction.He didn't say he was coming home, so I assumed that he has an orthodontist appointment or the like. But if he is in the city, and has a few moments, he will probably hope over for a quick lunch, or to pick something up
Now THAT'S what I call an advantage!

DisAbility

American culture is full of stories of people (and animals) who overcome disabilities, such as Dumbo, Forrest Gump, Hellen Keller, Seabiscuit, and more. I even admit to liking some of them. I unashamedly bawl every time I see Mrs. Jumbo locked up for defending her son, and I enjoyed the movie “Seabiscuit” very much. But what disturbs me is that we are feeding ourselves a message: only those who overcome incredible odds are worthy of our admiration.
OK, we need things to spur us on, to achieve things in our lives. And stories like “National Velvet” (anyone here old enough to remember that?) play to that need.
But I think that the real heroes are those who need to deal, day by day, with the inability to be like everyone else, who are not “poster” children for the NDSS(National Down Syndrome Society), who are regular kids with disabilities. I see how Ricki struggles day-by-day to deal with the stares she get in buses, on the street, 24/7. I see her friends at drama class who sometimes live lonely lives as they are not yet independent, and whose disabilities may well lead to them never being married. And I see parents, who may be dealing not only with a disabled child, but perhaps are additionally challenged with problems other “normal” families face, and am amazed that they just put one foot in front of the other sometimes. And I think that we need to inscribe on our minds that we are in life to run our race, to do our best, and being first place is not necessarily the objective.

Just remember: Winning is Nice, but it REALLY is the race that matters.

"Stand Behind"

Apparently there was an article in the national religious press (note to non-Israeli readers: this is a section of the Israeli society) lately about women from that community who have made abortions of a fetus with disabilities. These women believe in G-d, they believe that man is created in His image, and that life is sacred. But if such a community can have an abortion rate comparable to that in America, than I have a LOT of problems understanding that.
Women who have never had a baby with a disability are likely to look upon the mythical "might have" child with Down syndrome much as one looks at a monster. And I place a lot of the blame for that at the feet of the medical community. The attitudes of doctors that Down syndrome is something that must be eradicated, that these monsters must be found and destroyed, has been trumpeted into our ears for over 20 years . I THINK THAT MANY ARE ABORTING BECAUSE OFTHE IMAGE THE MEDICAL COMMUNITY HAS GIVEN US -- That children with DS are some type of monster that must be done away with.
I also used to pray to G-d: -If You have to give me a child with a disability, let it be physical. I could never handle having a child with "retardation".
Surprise, surprise, I had a child with DS, and my life continued, my kids are getting married, etc.

Every woman I have spoken to who knew prenatally that her baby had Down syndrome, said that the person they feared giving birth to was SO much worse than the actual child.
* * * * *
Imagine that you gave birth to a "perfect baby" and then went home. Three months later, you discover that he has diabetes. Or cancer. Or, when a teen they develop a mild bipolar disease. Would it even CROSS YOUR MIND to give the child you love, YOUR CHILD up for adoption? Would you KILL him?
[I mean, after all, he will eat up your time now. His siblings may be ignored. It will hurt the shidduch (marriage-match) chances of the siblings. Treatment will cost money.]

But of course no one asks the Rav (Rabbi)if they should give up their diabetic child for adoption, nor would they kill him. He is their child, and they love him.
But if a child with Down syndrome you would YES abort -you are saying that one can kill this neshamah (soul) not because of any of the reasons above (money, siblings, etc.), but because you find it unconvenient to deal with these problems, and since this child has slanted eyes/an extra chromosome, you have been forwarned and can take "action", before you love him. So in effect, you are killing him because it is inconvenient.
* * * * * *
When I hear that a Rabbi will “stand behind” couples who discover that there child has a problem, I never DREAMPT he meant abortion! To me to stand behind these parents would be to make their lives easier, and their children accepted in the community.
Rahter than encouraging abortion let this Rav give support to BOTH the PARENTS AND the CHILD.
-promote inclusive education
-promote jobs for the disabled
- no toleration of the “R” word as an insult
-finance respite and sib groups for siblings
-encourage rather than block group homes in your community
-encourage high school students and adults to spend time with teens and adults with disabilities
-aid parents in pressuring the educational system, health funds, and government to give these families the support needed

I imagine a community where each high school student volunteers to work one afternoon every other week with a special needs baby or his siblings. A community where teens with special needs are taken window shopping , to a movie, for a hair-do session by their able-bodied peers. The grocery man has the patience (as do the other shoppers) to wait a minute while the 10 year old with Down syndrome tells the grocer the items to ring up. And maybe the 40 year old business man can spend one hour a week teaching and playing chess with the 30 year old man with Down syndrome who lives next door. And the accountant that lives across the street helps him once a month with his budget.
To me, THAT is called “standing behind” the parents!!!

“YOU KNOW.....”

Friday morning Ricki was in a rather downcast (and slightly prickly) mood. The good news is that I was not half-glued to my computer, and had obtained a bit more than the minimum hours of slumber, both as a result of my new resolutions.(No, I’m not telling you how much sleep. I plead the fifth.....)
So at one point, as she was trying her “best” to irk me, I draped my arm over her shoulders and said: “You know, Ricki, you could try to be a bit more pleasant, and I think it would be so much pleasant for all of us....”
It worked. She listened. And she was pretty good the rest of the time before exiting the house to go to school. She even accepted that she would get only one diet candy, and not two, fairly quietly.
Oh, a bit of love and understanding goes SO FAR. I have to use it more often....

Priorities - and THE PLAN

For a long time now, I’ve known that there are things I have to change in my life. The way I eat, my lack of exercise... and more. I want to be less on the computer and more with my family. I want to accomplish much more than what I am doing day-to-day.
But knowing that I have to change, and changing, are two very different ball games.

Then on Sunday, it suddenly hit me: I have to be as serious about changing myself as I am about educating Ricki. What do I mean by that?

To effectively bring about change from an entrenched habit one needs to do the following, whether we are talking about our children or ourselves:
1) Analyze the situation. What is promoting you to continue behavior that you know is harming you? (Whether that harm is physical, emotional, or social....) What are you gaining from it? What factors make change harder?
2) See if there are any “factors that make change harder” that can be removed. (For example, if I want to lose weight, I need to see that I get more sleep, so that I won’t be craving the energy spurt that sugar gives me.)
3) Plan and set what positive steps you are going to take to reach your goal. (For example, plan a daily menu in advance, or count calories rather than just guessing that you were “OK”/ “not OK”, weekly weighing, etc.)
4) Monitor how well you are complying with the plan. Adjust if needed. (If not working, go back to #1 and analyze why the plan is not working.... analyze why....)

Because it the end, even a wordy blogger has to admit: Words and wishes only go so far. Actions are the ultimate measure of who we are and what we value.

The Barbie Brides

Ricki, like most young girls (and I guess a lot of older ones as well!) has a definite fixation on being a bride. The wish to dress up as a bride on Purim, or at drama class, are only two examples. Another is her dolls.
Ricki used to line her dolls up to teach them (playing teacher being one of Ricki’s favorite games....). But no more. (Nowadays she instructs her imaginary friends in science and Bible.) Ricki has discovered “Barbie” (or her look-alike at least).
I recently bought Ricki a barbie-style doll, complete with pink gown. And barely a week after that, a friend of mine gave her another one, complete with a luscious blue evening dress, and 4 other outfits. For the first several hours, Ricki kept switching their outfits. But now she has settled on the two evening gowns, with an addition of a white Kleenex on their heads as veils. Ricki arranges the dolls on our sofa, announces that the groom is coming to veil them (Jewish custom), and then covers their faces demurely with the Kleenex.
She has the whole procedure down pat. She DEFINITELY wants to be a bride.

Wordless Wednesday - A Welcome Visitor

This is a "Golden Oldie" picture from 2 years ago, but I think you'll enjoy it anyway!!

A Taste of Real Life

Monday afternoon I gave Ricki a taste of what real life is like. As we were the week before last (see HERE), we were running late in arriving at her drama class, and again we were in a taxi. And, exactly as two weeks ago, Ricki was pushing and shoving. On the way she was pretty good, but as we reached our destination she insisted that I get out and let her go ahead, and only afterwards pay the driver. I refused, as wasting the driver’s time is not ethical, and Ricki fumed and pushed and shoved as I paid him.
After dispensing with the payment, I exited the cab, and Ricki shot across the street, not in a safe manner. And I decided that enough was enough. I quickly caught up with Ricki, joining her in the elevator. (This alone caused protests, as she wants to feel “independent”, and go in the elevator on her own.) As we entered the club area, I strode boldly to the costume area, grabbed the wedding dress, and gave it to the director. “Hide it QUICK!” I hissed. And she did. There was no dress for Ricki this week.
If she is going to be downright obnoxious, she will learn that in real life it just isn’t tolerated.

Try This Tuesday-Learning Address, Phone

(PS, if you reached this post by someone's side-bar, know that I have a previous post today as well.....)

One of the most important skills your child needs to learn is to be able to say his name,address and phone number. And eventually, you want to be able to have him write it.
First, there is the need for a lot of ROUTE pracctice, starting with name, than address. Puppets can make this more fun.
We found learning the telephone number easier by doing it slowly, starting with the first three digits, and each week (or few days), adding on an additional number. One of Rick's older brothwers took this task on out of the blue several years ago.

Last time I went to visit the local government offices, and had to fill out papers, I realized that someday Ricki would to. I took extra copies of the more common forms, and had her fill some out (so far with help).
At this time I started adding a place to write Ricki's phone no., address, etc. to many extra things of hers, most specifically to school workbooks. (I did both on the cover AND the title page, getting double practice with each one. I have posted a picture of the cover/title page of her science booklet abouve, adding in RED the English translation. I found at first that writing the phone number was difficult for her, so I did a bit of extra support there:


Eventually I was able to phase out the rectangles, but I still need to put a line to separate the two-digit area code from the rest, and a line of highlighter on the are she expected to write on helps her keep her writting smaller.

Bad Banking.....

As I wrote last Friday, we really need to be “depositors” in our children’s “self-esteem” account, especially when the general public manages to make so many bad withdrawals.
Well, Mrs. “Thinks-she-is-good-enough-as-a-parent-to-blog” (ie, me), really blew it this morning.
One of the best pleasures a parent can have is to wake their school-age child on the day of a class trip. All the everyday growls of “Get up already or you’ll miss your ride...” disappear, as for once the eager-eyed child bounces up from his bed eagerly. But that didn’t happen today.
Ricki woke up in a contrary mood, as if just to spite me. She took several minutes just to get started on her get-up routine, and was definitely running late. She managed to tear (irreparably) a school blouse. (Second blouse this week... I will have to buy two more school uniform blouses 5-6 weeks before the end of the school year and the end of her attendance at this school. Another $10+ down the drain...) In addition she insisted on wearing (inappropriate) jewelry to school ( I HOPE and WISH the teacher would confiscate it ....). She dawdled enough that I really thought she just might really miss her ride. Then as she left the house, I saw that she was wearing her good special-occasion shoes. She KNOWS that it is not correct to do so, but, as with the jewelry, she is eager to get some “ohhs” and “awwws” from her classmates. And it was too late at that point, to make her change them.
And what was the reaction of Mrs. “Thinks-she-is-good-enough-as-a-parent-to-blog” to all this? I spent the hour yelling at Ricki that she was wrong, that she was lazy, that she wasn’t listening, etc. It certainly wasn’t good “banking practice”, and I better change quick if I don’t want to overdraw......

AAUGH!!!

I am hereby pronouncing a Charlie Brown AAUGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

AAUGH!!!!!!!!!!!!!!!!!!!!!!!
Ricki’s hearing aid is missing again! It disappeared in school yesterday. (Or the aide put it in her purse and forgot to tell me.....)
The search is on........

PS UPDATE
The hearing aid was found, thank G-d at school (or in the purse of the aide). Why I couldn't have been called and informed of this (as I requested be done if it were found), to prevent me stewing about it all day (sorry, I am not on the spiritual level to blandly take in stride without worry the loss of about three thousand dollars), I don't know. Peeves me off a bit. Now comes my test to see if I can "dan b'kav zechus" (Torah obligation to judge others in a positive manner).

Bird Flue, Swine Flue, and Down syndrome... and Faith

When we first started to hear about the swine flue, Ricki’s brothers started laughing at the fact that I was concerned at all. “Remember the ‘bird flue’? Another great way to sell newspapers......”.
“Excuse me,” I countered, do you realize that in these few days we have already gone WAY beyond where we were with the bird flue?” And that is true. The only good news is that it seems from the US statistics, that perhaps, especially with good treatment, the death rate may be low. But the statistics from Mexico of high rate of fatalities in the other-wise healthy population is worrisome....
But what I worry the most about is Ricki. How will this virus affect children and adults with Down syndrome? We have no idea. If this virus turns out to be hardest on those with poor immune systems, then they will surely be at bigger risk.
And I remember one tidbit from the bird flue scare (which I blogged about HERE and HERE):a little known pronouncement by those in charge (in the US) that in case of a real crises situation, any lack of medication would demand that medicines and medical services be given first to those who are otherwise healthy, excluding the infirm, and those with other preexisting “conditions”, including the mentally impaired and disabled. Israel currently has a meager amount of Tamiflu, enough to cover a bare 17% of the population. Such statistics do not bode well for the elderly or the infirm..... or anyone else not deemed as “contributors” to society.
Despite the irritating thoughts that all of this can lead to (“Why work to plan Ricki’s IEP if she (or we) may not survive?”, “Will I have to cancel my plans for the summer?”, etc.), I decided not to let my mental processes run amok. We have to limit what we worry about to things we can effectively work on, and control. We always seem to want to run our lives, and then something like this pops up to remind us that WE are not the ones in charge. And at that point, we are obligated to hand the reins back to G-d. Our job is to do the best we can with what life throws us. Nowhere is it stated that we get extra “brownie points” for unproductive worry.

Blogging Against Disablism - (updated and expanded version)

The Shopping Trip- Part 2

THE PROBLEM
After having Falafel for lunch, Ricki and I passed a clock store, and since I needed a watch, we entered. Ricki quickly convinced me to purchase her a timepiece. And then, as almost any teen, but with perhaps a bit less finesse, she started begging me to purchase other items for her, all the while handling them. The seller was thankfully calm, but I kept telling Ricki to return the objects that I had no intention of spending money on. And Ricki DID put the objects back, although slowly and with great reluctance. Like a lot of other 14 year old girls that I have known....
We had to wait in the store a few minutes while the owner put a battery in a watch I was purchasing. Meanwhile a man entered the store. I was in the middle of telling Ricki to put a pair of toy binoculars away. He saw her shrug once or twice, and he walked over, exclaiming “How much are these binoculars?” He then GRABBED them from Ricki’s hands, despite her fierce protestations, looked through them for a moment, then put them on the counter, and walked out.
To tell you the truth, I can take the word “retard”, when not used as a slur. I can even usually take the second glances. But the thing that shows me how far we have to go, are the people who act like Ricki does not even exist. And those who act as if she is incapable of learning. I was so shocked by this man’s behavior that I didn’t even react until he had left. Did he really feel that he would teach her manners by grabbing the binoculars? Probably not-he evidently thought that I was incapable as a mother, and Ricki was not smart enough to learn. Or did he even think at ALL? Did his actions not proclaim as loudly as any scream, that Ricki was not a person in his eyes, she was only “Down syndrome”.
And even platitudes like “These children are so loving...” drive me up the wall. Such statements are simply reducing a child with Down syndrome to an entity called “Down syndrome”, not Ricki, Jane, or Avigail. It is true that some times we may need to make a statement about Down syndrome. I can see myself saying that “statistics show us that about 50% of the people with Down syndrome are born with heart defects”. I tell parents that “researchers have seen that in general, children with Down syndrome are visual rather than auditory learners”. But they are NOT “children like these”. They are not “Down syndrome”. They are individuals.















THE CONSEQUENCE
The PROBLEM (with a BIG capital “P”) is that Ricki has adopted their attitude. When she was younger her aid and I worked hard and carefully to give her a good sense of self, Down syndrome, and of its effect on her life. Using stories about people with disabilities, including someone else with Down syndrome, we talked about disability, meeting challenges, and self pride. And we succeeded.... for a while. But about a year and a half ago a group of much younger girls at her school started making fun of her, and calling her names. They were reprimanded, but Ricki, being smart, picked up their message. And Down syndrome became something that she did not want to be. And that, in my mind, is a tragedy.
[I am not talking here about availing oneself of a cure, should one exist. Treating her Down syndrome would not change her intrinsic being or personality, but would simply make her life easier and open opportunities that are currently, for her, sealed with padlock, nuts, and bolts.]
If Ricki is to attain a life of contentment, it can only be achieved if she feels that she is a worthwhile, contributing being on the planet. To internalize that consensus, she needs to receive targeted, appropriate, and true praise for the many things she does. She needs, as much as the “negroes” in the 60’s needed the mindset that “Black is Beautiful”, a feeling that Down syndrome is not a disgrace or that she is an entity to be pitied.
The problem is that as much as I am putting good hard cash into her “self esteem” bank account, she is being robbed and swindled by the man on the street. And, unfortunately, there is no police.......


Blogging Against Disablism Day