Sunday, March 30, 2008

The Cold

All winter, it seems, I have been taking antihistamines, but this morning and yesterday I felt I didn’t need. Then, with a bang, I got the worse cold of the winter. I am beginning to suspect that I may have inherited my Dad’s hay fever… (DRAT!)
Isn’t it amazing that I have taken a three-day break in Pesach cleaning, and felt great, but now that I was all set for a full morning’s worth of cleaning tomorrow, I feel rotten as can be?

I am beginning to suspect that I am coming down with Pesach-itus…

(Actually, it probably has much more to do with the late hour I went to sleep last night…..)

Free Will

Ricky’s “point chart” worked very well the first week; less so the second. Now we are starting the third week, so I sat her down and re-explained the points, showed her the jewelry, and started anew. She was pretty good, but certainly not 100%. But that doesn’t upset me, because, after all, she IS a teen. I can’t expect her to be a robot that listens all the time.
Yet, when she flat-out refused to do homework, I drew the line, and decided that withdrawal of a prize was not enough, and initiated “consequences”. When she finally got her to agree to do homework, I started with something specially fun. All in all it was a pretty good day.

Thursday, March 27, 2008

That Extra Chromosome!

Tonight I made a phone call to ask about the wellbeing of a hospitalized child, with Down syndrome, of an aquaitance. Ricki overheard a bit, and asked who I had called. I explained. In addition, I told her how people who have Down syndrome often have, in addition to “a more difficult time learning things”, various health problems, because of “that extra chromosome”. (This is the second time I have mentioned chromosomes to her, but I am sure she hasn’t understood them yet.) I mentioned her own heart operation, although assuring her that now she is healthy.
But in the end, I had to tell her that this friend of mine is hoping for a miracle. Her child is very ill, and may very well not “make it”. I told her the blunt news that she is lucky, because not all kids with Down syndrome survive, even though she, thankfully, did.
In the end I tied the discussion up with the idea that things in life are not always what we want. Good people also suffer at times.
What exactly Ricki gets of all this I don’t know. But these are topics she will need to deal with in her life, and I have to initiate her towards a consideration of the topic.

Pesach Cleaning is Fun!

Yes, Pesach cleaning (spring cleaning) can be fun! Here are some hints how:
1. Put on a nice disc/tape when you work. I enjoy snazzy music; the beat energizes me!
2. Drop the expectation of non-helpers helping. You can try and corral them in… but try and drop the anger if they don’t.
3. Appreciate the oder and cleanliness as you expose it. It is FUN to see a drawer that you haven’t cleaned for a few years, free of dust. Take a picture is necessary.
4. If you are tired, yet have no time for a nap, sit down and do deep relaxation for 10-15 minutes. That should perk you up as well as a two hour nap.

Now there are other things you can do as well, but since I don’t practice them (like going to sleep on time…), I won’t preach them! Good night!

Wednesday, March 26, 2008

Kings, and the Sdei Chemed: A Study in Contrasts

Let me tell you a story about the Sdei Chemed, Rabbi Chaim Hezekiah Medini. This Rabbi, who later in life was the chief Rabbi in Hebron, was accused of adultery with an Arab cleaning lady in his youth. The charge was false, having been prompted by someone jealous of the young scholar. Eventually the woman came and confessed her lie, but the sdei chemed did not jump at the chance to clear his name. He was worried that his fellow student, the one who had paid the lady to lie, would be shamed in public.
Compare this to the mighty of England. Anyone familiar with history understands that “affairs” abounded at court. Even in our own day, not only was Dianna unfaithful, her husband, the heir apparent to the throne, admitted to adultery.
My only question is: How can a nation admire and idolize such people?

Monday, March 24, 2008

Purim and the Day Before

Purim was a very nice day. Ricki behaved very well, and some of the family was here as well.
The morning before was a different matter. I took Ricki with me to the grocery store, and her behavior was appalling. She kept trying to take “goodies”. In the end I decided that it was time to teach her a lesson, and I left the store mid-purchase with her. (Later I returned without her to finish the shopping.) The store owner tells me that when Ricki comes alone to the store she is fine (when I send her with a list), and that she only tries to grab things when I am with her (and she thinks she can get away with it). (The problem being that I feel that I must pay for any item that she opens, and she will likely consume half before I can stop her.) Now that we left the store this once, I plan to not take her the next few times (informing her of course), and then using some point system for the next time we go.

Sunday, March 23, 2008

I was going to post something different tonight, but fter replying to a post from two days ago, I don't have the time to do more. So go to "comments" on "I wouldn't change her if I could" for today's "post".

Thursday, March 20, 2008

Joy at Celebrations

The other day I was at a friend’s family celebration. One of her guests kept mentioning to the hostess different negative news facts. There is no lack of bad news. And we are certainly sorry about terrorist attacks and tragedies. However, I feel that to keep mentioning a recent tragedy did nothing to enhance my friend’s enjoyment of her celebration.
Let me give a few other examples.
1) The widow who told me after marrying off a child that she was exhausted after the wedding. At the wedding EVERYONE felt the need to “console” her. She was exhausted trying to find the balance between “happy” and “sad”, not wanting to risk being “inappropriate”.
2) Hard is the lot of a young adult who lets their sibling wed before they are engaged. Not only do they have to deal with their own possibly mixed emotions, but they know with a surety that on the wedding night 99% of the guests will approach them , including those who do not know them personally, to tell them “soon by you”.

When I celebrated my wedding (years and years ago), two tragedies could have been mentioned to me on that day. There had been a terrorist bomb explosion in the market of Jerusalem, and the child of a good friend had died. These friends had returned to Israel to finish the week of mourning.
I am grateful that no one felt the need to cause me sadness on my wedding night by informing of me of these facts immediately. I was given the names of the injured (from the bombing) to pray for, as is often done. But I was given the names without the extra information that these “sick” people were from a bomb incident. Then the next morning I was informed about my friend’s loss, with the added information that their week of mourning was almost over, so I should hurry if I wanted to visit them.
In short, as we are told in Koheles (Ecclesiastes):
A time to weep and a time to laugh
A time to wail and a time to dance
A time to be quiet and a time to speak.

Happy Purim everyone!
(This will probaly be my last blog this week, due to the Purim holiday.)

Tuesday, March 18, 2008

“I Wouldn’t Change Her if I Could”

When can one see one of the most extreme examples of “disability pride”? Ask on a message board for parents of children with Down syndrome if they would change their kids to “normal” if they were suddenly offered a magical cure. You’d be amazed at how many answer “NO”. The reasons given are usually “That’s who she is”, “She’s our special angel”, “I’m used to her like this”, and the like.

Here I am tempted to write a swear word. It is hard for me to believe this....
First, if these parents had a child with any physical disability, like diabetes or club foot, would you believe that they wouldn’t go running to the doctor for a cure? Why? Because illness infringes on living a normal life.
I hate to say it, but so does Down syndrome. I would grab at a cure. Not for my sake, not from shame, G-d forbid. For RICKI’S sake. So that she can get married and have kids that won’t be taken away by family services. So that she can understand nuances she doesn’t catch today, that warn her of danger. So that her chances of having a decent job will be improved.
As for those who say “I’m used to her like this”, I have a simple reply. My teens changed too. They became something I wasn’t used to. I never stopped loving them, though, as a result.

(PS Added note written later: It is worthwhile top read the comments. There is a whole added analysis of the matter there.)

Monday, March 17, 2008


I was interviewed by the press here the day before yesterday. No kidding; I really was. No, I have not gotten started with Israeli politics. I am accused of child abuse.
No, I did not spank Ricki in the parking area of the supper market. What I did was to allow plastic surgery on Ricki at age 1 year. This, the English press calls child abuse. And the attitude towards plastic surgery on several boards for DS tends to be very negative. The slant is that parents only do the surgery for their own advantage, from embarrassment, thus teaching their child self-hatred.
Well, I would like to tell a bit about the other side of the story.
I knew very well that the surgery would not make her look "normal". It only makes her look like she is less affected. So why do it at all?
First of all, it was highly recommended to us by Feurstein center, one of the big centers for treatment of children with Down syndrome in Israel. (They recommend it for the reasons given below.)
I knew already by that time that we wanted to go the route of inclusion, and I understood three important things:1- as much as I would like people to react to HER, they will react to her looks. It is a fact of life.2- I wanted her teachers to have higher expectations3- I did not want other children to react as negatively to her as they would without her having the surgery.We have been very pleased with the results. I have NO DOUBTS that this has eased the process of her inclusion.It had NOTHING to do with our not accepting her.It had NOTHING to do with our (G-d forbid) not loving her.We paid a mint in order to ensure a top-notch surgeon. It was totally for our own child's eventual welfare.

We purposely did it when she was young, at an age, true, where she can not give consent, yet also an age where she will not remember the surgery. Thus the argument that it will lower her self esteem would not apply here. If she needs a “touch-up” at age 20 plus, I would only do it if she asked us to do it. Would anyone accuse a parent who did plastic surgery on a “normal” child, for removal of a feature that causes them to be stared at, of child abuse? Or perhaps you would assume that they love their child and had good reason?!!!???? No, I suspect not
. And PS... she still gets looked at and judged by her looks... and I explain to her that it is part of having DS., that she will have to learn to deal with other people's stupidities

Sunday, March 16, 2008

The Chocolate Holiday

Well, Purim is coming, and the question is: Can I change?

Purim is a holiday when we distribute charity, and send portions of food to friends and neighbors. Surely this was originally the sending of FOOD. Most people today send candies, cake, and other delicacies. As you can imagine, the retailers advertise in such a way as to lead you to believe that if you do not send something “creative”, “original” or satisfactorily expensive, you are a bit remiss. Some of us fall for this, some don’t.
I personally like to send homemade coleslaw or another salad for Purim. The cakes and cookies just get shuffled from one house to another. I try and send what I would want to receive. Something healthy and which can actually be used later that day in the festive meal which commemorates the miracles of Ester and Mordichai.
Purim is also a day when it is easy to send a nice gift to someone whose work and efforts you appreciate. To this end, I have decided to send to the girls of Ricki’s school class a candy “tree” of chocolates and candy. (For them, I feel I do have to be “creative”.) The question is, can I keep my lips off the ingredients? And on Purim, can I also abstain?

I think that the first step to this end is to convince myself that I CAN accomplish this.

A Turn for the Better?

I received a small brochure from a friend on Friday. At first I suspected that it was, in the spirit of the upcoming “Purim” holiday, a satirical parody about inclusion (or lack thereof). However, on pursuing it, I discovered that it was in fact a booklet written to promote inclusion, connected with an agency that used to put obstacles in OUR way a few years ago, when we were pursuing inclusion for Ricki. This agency still, in my opinion, does not give the amount of support needed for inclusion. However, it does seem that it has made a switch in their basic operating mode: that today they do feel that inclusion is feasible, possible, and even positive for children in their pre-grade school years. This alone is a significant step forward.
This was a very interesting discovery for me. For years I have demonized the director of this agency, her name meaning the antithesis of inclusion to me.
Gee, I guess people CAN change, can’t they?

Thursday, March 13, 2008

End of Season Sales

Although I always felt in high school an anathema for the “shopping” culture, I have thoroughly enjoyed the last few days of end-of-the-season clothing shopping. I bought several things for Ricki on my own, things I was sure will fit her in two years if not in one. Today I took her to try on a few things that I saw in a slightly more exclusive store (not-bargin-basement style). It was nice to be able to get a few nicely cut offits at a normal price, and best of all, Ricki behaved pretty well today. So far the is earning most of her points on her chart. She is highly motivated, and is able to curtail her shenanigans whenever I remind her that she is working towards a prize..

6 Things About Ricki

I am always vexed that people view my daughter solely as a being with Down S, rather than as a person and INDIVIDUAL in her own right. Therefore, I would like to list 6 non-DS things about her:
1) She likes to change hairdos. She has 4 favorites, and each morning chooses what it will be today.
2) She is a big catsup eater.
3) Her favorite color, as with many many girls, is red.
4)She likes to cover her whole head while sleeping.
5)She wants to someday be a teacher. (I don’t know what I will do with this….)
6)Ricki likes to tell jokes

Wednesday, March 12, 2008

Progress Report

So here's what I did today:
1. I decided the things that most need working on:
a. to basically accept my authority, ie listening to direct orders. (Not that she can't try and bargain a bit, but to obey if given as an order)
b. to sit down and work a reasonable amount on studies
2.Review what she benefits from not cooperating: getting out of work, gaining things I forbid, negative attention.
3. Decided on a wanted prize not in use already for school
4. Bought prizes (Jewelry)
5.made up a chart page for the remainder of this week. Broke desired behavior down (listen in AM, listen on way to/from extra curricular activities, listen in afternoon, listen in PM, Did homework.)
6. let her choose the necklace she wants to work for this week.
7 explained it/ started it.

Result: Was MUCH better today. I also remembered to praise her when she listened, and bought her a sudden surprise prize for good behavior (I clearly specified what I was pleased with) on way home from her swimming class.

Tuesday, March 11, 2008


First, I made the mistake of shopping with Rickie after her concerta wore off. I should have known better.
On our way home from her exercise class, we passed a favorite store of children’s clothing who were having an end-of-season clearance sale. I peeped in, and the prices were indeed very low. Ricki had asked me to buy her a bottled drink, so I told her that if she behaved well in the store, I would buy her the drink that she wanted, when we were finished.
At one point she stepped out of the store for a minute (not dangerous here). A few minutes later she was back with a drink. She had gone next door, said she was thirsty, and a stranger had bought her a drink. (Actually paid for one that she had opened.) AAUUGGHH!!!!!!!!! (Besides the point that that she “got around” my plan, there is the bit about letting a stranger pay…)
Well, I am firmly resolved that this will not be condoned. For a long time things are going to be refused because she went behind my back. She will rue the act.
But I am still exasperated. And I still feel like a mom who can’t control her child. She is getting more and more out of control. As soon as I start working on one area, three others pop up. Which makes me feel like a failure. I am so scared that this will become a habit (in actuality, it has…). I should have done better behavior modification on this before. I am embarrassed, frustrated, and upset. But I am also determined. I will not let this pass by. And I pledge to start seriously on a concrete, preemptive plan. If I don’t post something concrete by Monday, you can question me.

Monday, March 10, 2008

Sleep and Flashlight

As I have mentioned previously, Ricki has been afraid to go to sleep at night, unless I am on the computer in the room. (It is interesting to note that on Friday evening, when I never use the computer, she has no problems.) In order to get some control of the situation, I decided to let her have a flashlight to use at bedtime. I had been told by people with experience, that the feeling of control that the flashlight gives the child (since he can choose to light it or not) helps them overcome their fear.
Well, we tried it, and it has worked pretty well! Actually very well. She was asleep in minutes!
Now I have to close this computer to get ME to sleep!

Sunday, March 9, 2008

A Wonderful Kindergarten Teacher

Several years ago, a friend of mine asked that her daughter with Down syndrome be included in a local day school. She was one of the first in our city to be "included". My friend asked the play school teacher what she would do if other parents protested. The teacher said, "Don't worry, that's my job."
At the end of the year, my friend asked "By the way, did anyone protest?" The teacher smiled. "One day a father came to our school to pick up his daughter. He noticed 'Leah’ and asked
-Isn't this child from the (special ed) class next door?'
-No, I replied, she is from our class.
He went home, and related this to his wife. She called up immediately and apologized, saying that of course they had nothing against 'Leah', and he hadn't meant to imply...”

“That”, said the teacher, was the only ‘protest’ we had the whole year.”

The teacher who is the hero of this story was also Ricki’s teacher one year. She died young, a few years ago, and I went to “console” the mourners. They related that any time a “special-needs” child she had agreed to accept would have a toileting “accident”, she would “handle” the cleanup, and not her assistant. (Normally the assistant handles things like this.) Her reason:” I agreed to accept the child; the aid didn’t have any say in it!”

Some “simple” people are special. She certainly was.

Friday, March 7, 2008

He Killed an Old Lady

My daughter has a friend who has a friend who killed an old lady last week. He was in the territories, part of an army operation to flush out a known terrorist, when suddenly a woman ran from the house. He thought that she was about to shoot, and instinctively shot before he realized that it was an old lady. He doesn’t feel guilty. The guilt he places at Hamas’s door. But he is not proud of any “heroic” deed. In fact, he is upset that he was the cause, even inadvertently, of shedding the blood of a civilian.
But Hamas, in sending motors to civilian houses in sderot, ones not hiding terrorists, have no such qualms. They are proud of killing, and the pledge is that they will continue. Continue to TARGET kids, moms….. and tonight, high school students in Jerusalem.

Thursday, March 6, 2008

“She Has to Know”

Today I got onto the bus with Ricki . She went ahead of me while I paid, as always, and sat down. Suddenly I saw a woman give Ricki a bag with some snack food in it. I stepped over quickly to intervene. I told Ricki that she must return the bag; I do not allow her to accept it. She wanted to keep it, but I insisted. The lady started protesting, but I told her that Ricki needs to know that she can not accept gifts from strangers. Finally, Ricki saw that I would not relent, so she threw the bag back to the lady, strewing the pieces over the floor unintentionally. I commented to Ricki that it was too bad that she had thrown the bag. The lady said “Well its YOUR fault, Lady!” I faced her and said calmly, “Look, I appreciate your effort to be nice, but for her education she has to know that she can’t accept gifts from everyone.” At that point we got off the bus (luckily it was a short ride.)
I am glad that I handled the situation calmly. I wish I wouldn’t have to have handled it.

Wednesday, March 5, 2008


Today I was in a car, and gazed out the window, hoping to see something interesting. What I saw was someone walking two poodles. The poodles were carefully groomed, with their hair trimmed in typical “poodle” style. They looked very aristocratic. It was interesting that one poodle was off-white, and the second one was coal-black. But what struck me was that they were not being walked by a fashionable lady in high heels. They were obviously the possession of a heavy set fellow, who was patiently waiting for them as they scampered around.. If you had asked me what sort of dog fits him, I would NEVER have thought of a poodle! Aren’t people interesting?

Tuesday, March 4, 2008

Everyday Concerns Versus the Bigger Issues

Actually, I think it is very interesting, usual, and human that most of us find the day-to-day events of our lives to be more "impacting" on our feelings and quality of life than the "news".
I remember when the first gulf war broke out by Saddam Hussein’s invasion of Kuwait. There was talk in Israel about gas masks, scuds…in short, everyone was tense. And I? I was in the hospital after the birth of a child, and quite frankly was rather oblivious to the commotion and panic around me.
I live in Israel, and there is a war going on an hour and a half away from us. But yesterday I was personally more bound up, thought-wise, by personal happenings in my life. This doesn't mean that we can ignore the bigger issues. Because if we do, they will eventually affect us and reach our doorstep as well. (This is besides our moral obligation to care for others, do justice, etc.)
However, our own everyday concerns take precedence in our lives, usually. We need to make time for both, each in its own season.

Monday, March 3, 2008

Eyes / Ears/ Pesach

Ricki has had a bit of trouble getting used to her hearing aid after a week and a half lapse of use. However, this morning when she said “I can’t hear you…” for the seventh time, I suggested that she needed to have her hearing aid. She heartily agreed! GRIN
I have had pinkeye for the last several days. Yesterday it finally started getting better. I dread the possibility that my other eye has “caught” this and could flare up any time. Besides the discomfort, just the lack of ability to use the swollen eye is very disabling. The lack of depth perception that a second eye gives one was enough to impede any efforts on my part to carry on “as usual”. I just couldn’t zip around as quickly or energetically as I wanted to.
Pesach (Passover):
If I was behind in my Pesach cleaning before, now I REALLY am! I am not moaning, but laughing! I am looking at this as a happy challenge-race.
Meanwhile, I did clean and order our closed storage room. Amazing how much space there is in there, once the junk got taken off the floor….