Thursday, July 31, 2008

I Hate Shopping (With Ricki)

Yesterday I had to do some shopping with Ricki. In the morning we had to buy school supplies, and in the afternoon clothing. Normally I wouldn’t buy clothing at this point of the summer, but I received a letter from Ricki’s overnight camp, and they expect us to send 10 days worth of clothing, plus some reserve. Well, we are no where near that amount of clothing, so I went to buy some.
I don’t know why, but Ricki is inevitably TERRIBLE when we go shopping, especially for clothing. In the morning she was ALMOST “passable” on behavior (kept trying to play with the cash register in the bookstore, took a bit of stuff before asking, sat on the floor only once). In the afternoon she was pretty bad. She kept sitting on the floor, running away, etc. At least this time I was VERY firm with consequences (walked out of two storse, didn’t buy her a drink).
This morning we have a bit more of shopping to do. Ricki woke up and asked if we were going shopping. I answered affirmatively, and stressed that I expect her to act like a big girl. Before we go I plan to spell out clearly my expectations, and the positive/negative consequences of proper decorum or lack thereof. Wish me luck! (I will try and post an update).
* * * * *
Later in the day:
Ricki was better today. Mind you, that did not stop her from moaning as if in transition phase of labor a desperate “I’M HUNGRY……” when passing the popcorn stand and creating a real scene. [The popcorn man, on hearing my repeated refusals to buy her any snacks, immediately offered to give her some. He actually took a bag and started filling it… ( I said “Mister, do YOU give your kids EVERYTHING they ask for?????”). He really only desisted because I walked away, and Ricki followed. Some people just don’t get it.]

Wednesday, July 30, 2008

Dr. Jekyll and Mr. Hyde

Sometimes I feel that Ricki is like Dr. Jekyll and Mr. Hyde—or like the little girl from Mother Goose with the “curl in the middle of her forehead”. Because when she is good… she is very good… and when she is bad… she is horrid.

Yesterday at swimming she was good most of the time. However, near the end of the lesson she spat at the teacher (who, thank G-d, gave Ricki a piece of her mind). Then she acted the same way to a teen there. Of course there were “consequences”, and she was contrite, but I was very adamant that I was not forgiving her as this is an activity that has often been repeated. Next week we have to skip the lesson for technical/religious reasons. But she doesn’t know that, and she will be informed next week that swimming was cancelled because last week she spit.
Then, later in the day, I had no choice but to take her with me to a meeting in Jerusalem. I bought her a new book to read there, to keep her occupied. However, the meeting took MUCH longer than I had anticipated. And Ricki sat there quietly for two and a half hours!!!!! So she was “very, very good”.

Tuesday, July 29, 2008

Man Plans…Mom Plans

Before this summer vacation, I had SO many plans of things I would do with Ricki. I knew I couldn’t plan too much… after all, about half of the school break was slotted for day/overnight camps. But in the other four weeks, we would cook, sew, fold laundry together, study a bit, and have tons of fun. But I’m a week and a half into one of those free periods, and have little to show… we’ve done almost nothing. Part of this is because we have been doing some shopping for the upcoming wedding. But after a lot of thought, I have to admit that the main culprit is the computer. I LOVE reading and the computer provides such interesting stuff!
But long term, what will I get from most of what I read on the net? Not that much. So I’ve decided that I have to really limit how much I read and spend time on the computer, and spend more time with the family. Problem is, I’ve made that resolution before, but only have done partial changes.
So if you read this blog, I love comments…and appreciate knowing that the blog is read. But probably will not be able to regularly reciprocate and read the blogs of others, except a few. I just can’t. Family and real people MUST come first.

Monday, July 28, 2008

The Good, the Bad, and a Decision to Have Compassion

Yesterday evening I went with Ricki to the fabric store. We bought cloth to sew her a dress for her sister’s wedding (in three months). We bought cloth for something very similar to what she wore for the last family wedding 4 years ago: A black top, a pink skirt (last time was red), flared, with black lace over the skirt. [ See the picture to the right, which shows the dress she wore four years ago.] As the lady showed us various samples, Ricki was very emphatic about what she liked… and didn’t like. The saleslady was impressed, and I was pleased. (I was extra pleased because it just so happened that she agreed to what I also wanted, though the choice was hers. I did limit the choice to things I felt were reasonable.) Sounds like such a big girl, no?
So then, why in the middle of the night did she make in her pants? Sometimes she can be so adult, and sometimes so small!
I was awakened to my husband’s growl that Ricki had been in the bath for an hour, and that if I wanted to save the water level of the Kinneret (Sea of Galilee), I better check what was going on. I demanded entrance to the washroom, only to discover Ricki getting dressed. However, the tub was completely blocked up from fecal matter. I decided at that point that she needed some compassion. She had made a terrific mess, but… she had also tried so hard not to wake anyone up. She had managed to exit that filthy tub 95% clean. For the next half hour, I unstopped (with a real plumber’s metal coil) the tub, and flushed out the drain pipes with a strong flow of fresh water. (Sorry about the Kinneret, but I didn’t want any gunk to stay in the pipes under the bathroom floor, to add an “aroma” to the house.) Then I scoured the tub. All this took about 35 minutes. Then I had Ricki rewash herself, get dressed, and go to bed. (She was more than willing to get up, stay up, and read a book, but I did growl at that point: “Ricki, it is the MIDDLE of the night…..”)

I suspect that her intestines can not take the summer fruits…. Or that she ate several tomatoes. (Tomatoes, being first cousins of catsup, are her favorite “fruit”.) So now she wants to sign off fruits…. But then she’ll go back to tons of bread. Seems I can’t win for losing….

PS. It would be real tempting to post just the first half, about the cloth store, and leave out the second part, which might be SO discouraging to new parents. But I want this blog to be a true picture of what life with a teen with Down syndrome can be like. And, having spoken to many parents with teens, the consensus is that even though they are usually very good at managing their toileting needs, “accidents” do happen. It could be that part of this is due to the fact that their bowl may not be 100% OK.

Sunday, July 27, 2008

“YES? NO??” and the Case for Education

Now I am going back to over a week ago, when I was away at a Down syndrome conference. I felt the vibration of my silent cell-phone and quickly fetched it from my briefcase. “Hello?” Ricki’s evening babysitter was on the line.
-We think that maybe Ricki get her period.
-What do you mean, “think”? (Oh no! Just when I’m away she has to get it the first time!)
-Well, her dress had some mud, and the teen who took her to the park said that she had a stomach ache, so maybe…..

Well, I’m not even going to tell you if she had gotten one or not. That’s an invasion of her privacy, and none of your business. However, the question of “Yes or No?” was not answered for several hours, as Ricki was very discreet about changing her clothes, bathing, etc. But the fact that I had prepared her in advance, and that she knew what the word meant, calmed me considerably when I realized that she might have to face this with just the neighbor’s help, since I was several hours away. (Plus she had no sisters around to fill in for me.)

So imagine my horror when a mother announced to the group of women at the conference how she had prevented her daughter from speaking inappropriately by not teaching her… and that she had had the luck that her daughter was at home when that first menstruation had arrived.
I had felt the need to protest. Education is a must. And so is education in modesty. And that education does not begin at age 11 or 12.
Modesty in dress/ talk,
private/public places,
private/public actions, etc
must be taught slowly for several years. THEN you have a chance that it will be ingrained enough to be effective when the need for it arrives.

Friday, July 25, 2008

Three Short Pieces for Friday and Saturday

“Cheer of Down syndrome" campaign
Ricki can occasionally be open and talkative when meeting new people on the bus (buses here are social, see my post “Buses in Israel from Tuesday). Other times she may stick out her tongue! (Actually, she no longer sticks out her tongue--we've been working on that!)
I guess the difference is the "Vibes" she sees. The problem is, little kids, not realizing WHY she looks different, have a tendency to stare. Then she stares back, scowls, and growls, and scares them completely. So much for our "spreading the Cheer of Down syndrome" campaign!

She also likes to coo at babies on the bus. Some mothers handle this very well, and others don’t (especially if two minutes ago she scowled at their toddler!).

In Defense of Chareidi Education
In the latest group of psychometric exams in Israel, the ultra –Orthodox (chareidi) students taking an ultra-orthodox course to prepare them properly did better than the national average. This was despite learning English from scratch.
These figures are a support for the ultra-Orthodox approach of teaching mainly religious subjects through high school, along with the 3 R’s and a bit of science,. It has been shown that those students who do want to continue on to learn a profession are able to make up the lost material very quickly, because they have learned to STUDY in yeshiva.
While there are, in my mind, things that can be improved in our school system, these figures should be a relief for grandparents who are afraid that their chareidi grandchildren will not have the ability to study and learn a profession later in life. And the advantages of chareidi education: a very low rate of drug use, no violence, no teen pregnancies, and respect for elders---- are implicit and attainable.

Calling All Researchers!-The Catsup Connection
Anyone want to do an interesting piece of research on Down syndrome? If you do, so try and discover the link between the 21st chromosome and catsup. I’m not kidding. I am positive that there must be a connection.
I have spoken to several parents, and have yet to hear of a child with DS who doesn’t love catsup. In fact, it is high and noticed very often on the list of “favorite foods”. Ricki doesn’t particularly like sweets—but put catsup on a food and she’ll eat about anything.
Now, I can hear you countering: “But ALL my kids like catsup.” Yes, I know. But they also like peanut butter, white cream cheese, tuna and salmon spread. Ricki (and many other children with Down syndrome) want ONLY catsup on their bread. Believe me, I keep trying to indoctrinate her taste buds with low-fat cream cheese….. but it’s:
“Catsup, catsup, we scream for catsup!.”

Thursday, July 24, 2008

The Hearing Aid: 8 days

I don’t know if any of you noticed in yesterday’s post, but Ricki’s hearing aid had been out of use for about 10 days. For a few days we had not been using it because the school aid complained that Ricki was taking it off a lot, and we were afraid it would get lost. So I also choose that she would not wear it during my vacation. Since she would be staying at several places throughout the day, the risk of it getting misplaced was just too great. So I carefully placed it by the telephone, in its case, sure that on my return, I would immediately make a star chart with prizes for wearing it regularly.
Then, Sunday morning, an hour before my trip, I noticed that it was missing.

My heart sank. This tiny piece of electronics costs about $3,000. And while she CAN get by without it short term, she needs it long term: to hear better and more clearly in school, for language improvement, and to save my sanity (since without the aid she puts her tapes at TOP volume). [Try listening to some idiotic children’s tape at top volume ten times in a row, and see if you are not a candidate for the “funny farm”.] However, $3,000 is about a tenth of our yearly income. The original aid was paid in part by the health department, but I quickly checked and learned that they do not pay for replacements every year. The good news was that unless Ricki tossed it out the window (not impossible, but improbable), it was somewhere in the house. Each phone call home during the conference started with my query: “Did you find the hearing aid?” Answers were negative.
On my arrival home, I unpacked, and the next day started the “Clean the house thoroughly and FIND that aide!” campaign. On Thursday I promised 100 shekel (about $30) to charity if I would find it. No luck. Friday I had no time to look. Then Sunday, I promised a double amount (pointing out to my husband that this was only 2% of the cost of a new one). But this time I said “Omar Rebbi Binyamin” ( a special prayer for finding lost objects), and I found it [“EUREKA!!!!!”] behind some books on one of my 50-some bookshelves.

The aid had been missing for a total of eight days. I was thinking about starting the process to get a new one, afraid that Ricki had chucked the old one out the window. (Once, about 6 years ago, when definitely old enough to know better, she had cast a piece of silver outside to the sidewalk below. I am sure the finder was amazed that someone had thrown it out….) We see that monetary loss can cause a lot of action and concern..The question is, as I even one tenth as worried about my weight? My health? My Midot (personality)? I wish I could answer positively…..

Wednesday, July 23, 2008


Yesterday evening I was so discouraged that I didn’t even feel like writing. Ricki had done marvelously at swimming lessons, despite our having missed the previous two sessions. Then in the last five minutes she “ burnt the cake”. She acted atrociously (sticking her tongue out and spitting, and throwing stuff into the water) and we had to remove her from the pool basically by force, to enable for the next student to go in. Then she misbehaved on the bus home, and at home. Also, before the swimming lesson she purposely wet her hearing aid (luckily the $3,300 aid survived), because she felt like not wearing it. (I had made her a “project” to wear the aid and get used to it again after it had been lost for 10 days….) She also managed to break her last pair of eyeglasses (at least just the leg). I realize that this may all be because she suddenly finds herself in a less structured day (even though I do give her some structure), but that fact does not excuse it.
. It will not help her get along with others as an adult
Then this morning, she took 3 pita breads (equivalent to 12 slices of bread), thinking that this would be her breakfast. I mean, REALLY! Obviously, her meal was quartered, obver her protests. Again, she overeats when there is little to do, but even THAT should have a limit.
In short, as we enter her first non-day camp week of vacation, I find myself setting limits every moment. I try to be positive, using positive reinforcements, praise, etc., but it is hard when SO many negative behaviors are occurring. I find that Ricki is getting way too much negative attention, if not from me, than from other family members. And I really put her down verbally at one point yesterday evening, which does not help neither her nor my discouragement.

So I guess she needs a bit more structure, filling her days with fun activities, and also some crafts (to express some of that anger) as well. But to fit this in with my need to catch up on housework, etc., is rather challenging. I feel like I need to be superman. But its hard to be wonder woman when you only had four hours of sleep (this time NOT my fault; I am shutting up to protect the guilty party, but it isn’t Ricki).

Tuesday, July 22, 2008

“Try this Tuesday” #1

My regular post for today is below this one. This post is part of a "share-ideas" posts by several blogers. People who are not parents of special-needs kids, can skip (although much of this info is usefull for ANY parent with small kids....)

For learning letter names, as opposed to sounds, we baked bread dough in letter shapes. It was a fun activity, and we talked casually about the names.
* * * * *
When toilet training Ricki years ago, we covered the sofa, armchairs, and the like with clear nylon tablecloth. Made it less tense…..
* * * * *
Kids learn to climb up on the sofa before they learn to climb down. During that interrum, they tend to take flying leaps off the sofa, and if you have non-carpeted floors, it can be scarey! (Especially here in Israel, where the floors are STONE!)
So we went to a carpet store, and bought a scrap piece which was longer than the sofa, and about 2 feet wide. Then we took it to an upholsterer, who sewed around the edges. We slipped one long side just under the sofa legs, and we had head protection!

for more ideas, click this button, and there click the Try This Tuesday blog for today. There will be an idea there, and more at the bottom of the page:
Try This Tuesday

Buses in Israel

Last night as I went to sleep, I suddenly realized that those of you who do not live in Israel may not really understand my last post. People in America do not interact very much with each other of buses. For people not to have commented when I corrected Ricki would be expected.
Oh, but in Israel, it’s not like that. Riding buses in Israel is an experience.
First of all, Israel is a small country. And people care about each other. Remember when that lady was killed in the US (in the early 60’s) and cried out for help for half an hour, and no one called for help? That would NEVER happen here.
First of all, when you get on a local bus, you are very likely to meet up with a neighbor, friend, daughter’s former teacher, etc. And even on a non-local bus….occasionally you meet that old neighbor that moved away, your neighbor’s sister, etc. And of course, these “meetings” on buses are often not just acknowledged with a cursorily nod. People will gladly exchange places with you so you can spend your ten minute (or more) bus ride “catching up” with what is new in your friend’s life.
And even if you don’t know anyone on the bus.… well, people here have no qualms about expressing themselves. If you would go on a bus with a baby in a sweater in the summer (maybe you just came from an air-conditioned building), people would tell you “Lady, can’t you see that your baby is hot? For G-d’s sake take the sweater off!” New young mothers hate this off course, but it IS because people care.
And if you think that you can have a private conversation with your daughter in a foreign language (not Hebrew), think again! Whether it’s French, Spanish, English, German, or Portuguese, you are likely to get a tap on your back. “Excuse me” someone will comment in that language, “Where do you hail from?...... Oh, from __________? Maybe you know my Aunt So- and So who lives there?” Now “there” may be a huge metropolis, and you have a better chance of winning the lottery than knowing her Aunt Tessie from wherever…… although, amazingly sometimes you actually do!
And, in Israel, people actually DO stand up for the elderly and the infirm, and for pregnant women. It’s because it’s a mitzvah (good deed), and besides, someway, somehow he is probably related to someone you know……. and gosh, wouldn’t YOU give your neighbor’s 2nd cousin’s granddad a seat?!?

One Step Forward, One Step Back? Maybe Two Forward….

Gee, a lot of little interesting things have happened lately. At least it will give me what to write about!
Today, coming home after dance class, I went to the supermarket to get (cheaper) diet ice cream sticks. (An essential in the hot, humid summers we have here…..) Unfortunately they were all out…..
BUT Ricki acted very good in the store. One step forward.
One step back:
But then, when we got on the bus to go home, she went to the back and was either given, or she asked for, someone’s almost-finished bag of potato chips. I of course did NOT put up with this. In no uncertain terms, Ricki was told that “We do not accept gifts from strangers”. So she quickly acquiesced.

Two forward?:
The nice thing was that for once, no one piped up that she is cute and sweet. That I should let her have it, etc. One reason may be because the lady who gave her the bag was way to far away to protest. But I saw a few faint smiles as I told Ricki that she is not a charity taker, and I think people understood. Also, I spoke without raising my voice, which of course is good in any case

Sunday, July 20, 2008

The Most Important Lesson- Re: “Special” Children

(see first today's earlier post)
It is extremely important that we convey a message of love to our children with special needs. For them, the need is even greater. Why?
1. We tend to push them to learn new things; they may interpret failure to learn something as an inhibiter to our love.
2. People on the street stare at them, not always kindly. This may make them feel unlovable.
3. People may gush and say platitudes, or demean the ability of our child. Almost all kids with special needs will eventually come to realize that this is also a demeaning of their worth.
So our children are very vulnerable. What can we do to show them our love?
1. Explain to them what their disability is, and what its effect are. This is an ongoing process of several years in some cases. Be sure to not sound negative about the condition, as it is a part and parcel of their existence. If their disability is visible, explain that they will have to learn to deal with staring. (You can help them learn to deal with this.)

(When Ricki was small, I made a book about children with disabilities, and the “aids” that each person needs. The hard of hearing person needs a hearing aid; the person with CP needs leg braces, etc. On of the disabilities was Down syndrome, with the picture of a friend’s child, not of Ricki. I said that this girl, who had trouble learning, used a computer (in the meantime) to write. Later on I told her that she also has Down syndrome, and what that meant to her life at that time. (On later occasions I have updated that “what it means to you now” part of the conversation. Once when she was talking about getting married, I shared with her the knowledge that Down syndrome will make finding a spouse harder. –See “We Plan and They Plan", November 21st’s blog)

The main point here is to show that the disability is something they deal with, but not them. And that it does not affect your love for them.

2. Yes, you can push your child to learn things. But it has to be fun, and with love. Try to make the study connected to things that he enjoys.
Its OK to sometimes say:
- “I see you’re tired. We’ll try again tomorrow.”
- “I see you didn’t learn this yet. Don’t worry, you tried, and that’s enough.”
- “I really see that you are trying hard. But that’s enough for today.”
(With Ricki we had a phrase: “We try a bit, and try each day, and in the end we will succeed.”)
Above all, study time is not a time for anger. And if he isn’t trying? See the next point.

3. When the child misbehaves, doesn’t try, etc. etc, consider using POSITIVE BEHAVIORAL SUPPORT., not punishments. For those unfamiliar with PBS, I recommend highly the book: Parenting with Positive Behavior Support, published by Brookes
(see: )

4. Insist that others speak to your child, not through you, and that they address him by his name, or otherwise appropriately (and not, “sweetie”)

The Most Important Lesson

There are SO many things that we have to teach our children. But the first is that we love them. And this lesson is one that must be taught again and again, until the child feels it through his bones and then more.
And if you ask me: “What, Isn’t fear of G-d more important?”
Well, if a child doesn’t know that you love him, he has no way of imagining that G-d does. After all, if his OWN parents don’t love him, than he can only feel unworthy of ANY love. Who will love him if his parent’s can’t? And I will add that the best way to get a child who is “off the way” to return is to accept him and love him.
Now, I am sure that ALL of my readers know that they love their children. But do they know it? Did you ever look in a mirror when yelling at your kids? Do you know how awful that looks?
I will be honest enough to admit that I yell at my kids. I am not proud of it, but I am not pretending here to be perfect.
But I also:
1. Listen… even when my 20 year old admits that he no longer wants to live the type of life I would like him to. I may mention that fact in passing, but I will be sure that he knows that I love him despite this. And that I admire other aspects of his personality. And that he must stay in contact with me, I will not compromise on that.
2. Can give a warm caress, a tussle of the hair, even a hug, even though in general I am not the demonstrative type. This applies also (in private) to those teenage sons who blush at a quick hug.
3. Can be flexible. Rethink that request; give up my plans for the evening in order to watch a movie my teen brought home; trust him with something I was hesitant about.
4. Am civil. Even when denying something, do it nicely. He may still scream at you “I hate you!”, but he will see by the HOW if you hate or not.

And while you can say “I love you” it helps. But actions, and words, speak louder than words.

Saturday, July 19, 2008

Gee, They Grow!!

My sixteen year old son recently bought himself a new suit. Then he got a haircut. I don’t know why this made such a difference, but suddenly he looked much older, and more mature. He suddenly appeared a bit like his older brothers. He doesn’t look like Rickis slightly older brother, but like a young man! Gee, He’s growing!

Friday, July 18, 2008

Mommy Does Do Something

I think that I finally have an answer to those family members who say I do nothing but sit on the computer / study with Ricki or prepare materials / volunteer for Down syndrome organizations.
I should have taken a video on my arrival home after four days at the Down syndrome conference. Despite my son having “done the dishes and the laundry” at least once, the house was a wreck. The bathroom needed disinfecting; the sink was full to overflowing with dishes. In addition, the table in the living room was piled high with assorted toys and games, crayons and scissors. And there were about 4 loads of dirty laundry waiting for my attention. (This is despite the fact that I had washed all of the family’s clothing down to the last sock before my departure.)
Thus, it stands to reason, that normally, in addition to preparing study materials for Ricki, I :
-Do all the things we hired people to do while I was at the conference.
-Do the things we forwent when I was gone (taking Ricki to private dance/ swimming classes)
-Do what family members did instead of me during my absence
-Do what usually gets done, and wasn’t done during my vacation.

Case rested.

Thursday, July 17, 2008

Good versus bad

This is an approximate version. I am not sure I remember it word for word......

At the conference the other day, someone said something about children with Down syndrome having only a "good inclination", and not a "bad" one. (This is a sister statement to the "They are all so cute and loving.".)
Later that evening, a friend grinned at me (she also has an older child). "Does Ricki only have a good inclination?" (wink)
- "Yeah", I said, "she broke her glasses on purpose yesterday because of her good inclination...."

New parents , I have news for you. They are not always sweet. Kids with down syndrome, just like anyone else in the family, can be ornery, difficult, angry, not sweet, etc. THEY ARE PEOPLE.

Sunday, July 13, 2008

Up late!

I will be posting sporadically if all all for the next few days.Its a way-too late hour to be posting, so I will leave you with this tiny tidbit:

When Ricki was small, she liked saying "No" to everything (pity she never grow out of that...LOL), and the word for "RED". We taped her saying "not red" when we prompted her "say 'red'". Till today an emphatic "not red" brings smiles and laughs to all in the family.

* * * * *
I take great pride that my 16 year old runs the washing machine like a pro! Having a busy mom is educational for “ siblings”…..

Thursday, July 10, 2008

The Wedding Preparations

Ricki’s older sister recently got engaged. This is very extra special to me, as she is my only biological daughter who will, G-d willing, bear and raise her own children. [ While I don’t see Ricki marrying being impossible, I know that if she would ever have children, the social services would take them, and THAT would break her heart. So I can’t see Ricki RAISING her own children.] So this engaged daughter is the only one to whom I will ever be able to “pass on” my “job” of childrearing to.
Now mind you, she is very different from me. But now that she is engaged, both she and I are seeing more and more of the similarities that we share. And she, meantime, is running around , exhausting herself, arranging an “event” of a wedding (not exactly my style, but in many ways quite excellent)…

And I am beginning to teach Ricki wedding dances!

200!! ?? !

I am amazed, to discover that I have already written 200 blogs! And to my family, an apology that this blog is so Ricki- orientated. That is partly because she is what changes in my day. Also most of my non-family readers themselves have children with a disability.
Another reason is to protect the privacy of those quilty of wraking havoc in my world.

I hope you all enjoy the blog.

“I Want to Go in Myself”

Ricki had a dental appointment yesterday afternoon—a check-up. She acted up (a bit) on the way there, and on the way home. But at the dentist’s she was fine—even better than fine. She decided that she wanted to go into the examination room alone (“I’m a big girl already.”). I consented, with a thought of “let’s see if she actually GOES in alone”. I was also very pleased that the dentist understood, and readily agreed. (Of course, she gave me a verbal report afterwards.)
What is most amazing is that Ricki agreed to have the dentist swap her teeth with fluoride. Wanting to be big has a BIG effect and power. (Of course, that didn’t stop her from begging me for a drink all the way home, despite the dentist’s orders to the contrary.)

Tuesday, July 8, 2008

What an Evening!

I had a real hectic evening today. First of all, someone left the door of the deep freeze open this morning, just a pinch. But in the terrible heat wave we’ve been having, EVERYTHING in the deep freeze defrosted. So I have spent the evening cooking fish and chickens so that I can later refreeze them. And of course, just yesterday I had one of the boys jump over to the discount store and buy me a sizeable amount of (slightly less) expensive diet artics (ice cream bars). They are probably ruined beyond repair, but I will check after they are refrozen.
Ricki who has been clean for several years recently has started making a mess in her pants most afternoons. It is probably a behavior problem, and I have started a positive behavior plan for this, but tonight she not only made a mess, but made a mess of that!
The neighbors left their 12 year old babysitting, and he fell asleep. Then their toddler awoke and started screaming in the window. We had to force an entry, to calm the toddler.
Ricki also managed to tie some twenty NEW hair elastics onto her hose, and I had to pry them off one by one.

I was SUPPOSED to finish folding the laundry this evening, and to study a bit with Ricki. She wanted to study, being bored (at least when she wasn’t making a commotion), but the chickens had to take precedence.

An “Artic” (Popsicle) Refused

Yesterday evening, as a treat on our way home after dance, I purchased pizza for Ricki. This way she had an immediate supper, and I didn’t have to make it. (Of course, that didn’t stop her from making a fried egg for herself 4 hours later, when I wasn’t paying attention. (I would have told her to consider having a fruit instead….)
We sat down in the pizza store (I ordered salad plus a bit of pizza), and enjoyed “eating out” (which we do on the average of once a year or so.)
When we had finished I went to pay, and Ricki gravitated to the “artic” (popsicle) cooler. The owner chatted a bit with me, wishing me luck with Ricki, asking if we are locals, and the like. At this point Ricki swiftly pulled an artic out and begged for it. I said “No”, and she put it back. (Look at the progress we have made over the last several months!)
Then the owner piped up: I’ll give it to her as a treat!”
I swiftly vetoed the idea, both because of calories, and the “no gifts from strangers rule”. The fellow was really nice, and I faltered for a half-moment. But rules are rules. I explained to him why not, and thanked him for the nice thought. He proved that he was nice by not continuing to offer the artic after the explanation.

Monday, July 7, 2008

Ricki and the Lion in the Living Room- chapter 2

A few days later, Ricki’s two brothers (they are not orthodox) showed up to visit, bringing with them their small “pug” dog. As far as Ricki was concerned (at least at first), it could have been a lion in the living room. The most she would do was talk to the dog, or throw him a toy, from a safe DISTANCE.
Then another relative brought, the next day, a black kitten. As He entered, Ricki froze.

NO, she did not want to pet the cat.
NO, she did not want to feed the cat.
Enough said.
Her mind is made up.

Ricki and the Lion in the Living room- chapter 1

Perhaps it all started a few weeks ago, when Ricki and I were returning from a doctor’s appointment. There was a black cat near the bus stop. As far as Ricki was concerned, it could have been a tiger. She was scared. Period. A woman sitting there said what a shame that she doesn’t have an animal to take care of.
Now that may be true, but in general, orthodox families (at least in Israel) don’t keep pets. (When you have 6 or more kids, who needs an animal to keep you company?) By the time we had left the bus stop, Ricki had calmed down enough to wave at the cat from AFAR.

Sunday, July 6, 2008

Sleeps in Your Bed?

Today I happened to see on an internet site (concerned with DS), posting by several mothers who let their young, and not-so-young children with DS sleep with them at night. In general I do not think that this is a good idea, and here is why:
I have a friend who started like so many of these moms with their kids in her bed, and now at 20+ her daughter is still there! It got a "bit" crowded in the meantime, but if you think that little kids with DS can be stubborn, wait till you have a teen! At the age you would kick any "normal" child out of the bed, the kid with DS should go too.
Besides the inconvenience that an older child can pose if you are married , I suspect that at a certain point it is good for the child's normal perception of "self" to see themselves as grownup enough to sleep on their own. Also they should know that they are not going to take Daddy’s place, whether Daddy works at night or not.

Tools to help the child move:
-relaxing music in the room
-give them a flashlight (t6hey have control over it) to chase all the monsters away with....

Friday, July 4, 2008

French Toast

Ricki has matter-of-factly made breakfast for herself two days in a row. Yesterday she made French toast, and today a fried egg. I am happy that I have taught her, slowly, the skills needed to do this, including lighting the stove. I knew very clearly that if I did not teach her, she would surely do it one day on her own, WITHOUT the taught skills. Its definitely safer being taught FIRST.

My Brother the Inquisitor

I am sure that this last afternoon, Ricki viewed her brother as something akin to an integrator. I was taking an afternoon nap, and he suddenly noticed that she was not at home. He called out her name, and she came in the front door.
Now how well does your average 16 year-old get along with a 13 year old sister? They LOVE to pick on them. And the fact that she has Down syndrome makes no difference. So he starts interrogating her. “Where were you? WHERE?”
And what is your average kid (if there is such a thing) with Down syndrome do when questioned in a threatening voice? Ricki shrugged, “I dunno…”
At this point I intervened, calmly ascertaining that Ricki had only exited the front door as part of a make-believe game. I diplomatically abstained from telling her brother off. I figured he had already realized that yelling was a mistake, and I didn’t have anything to gain by mentioning it.

Thursday, July 3, 2008


Ricki showed me some loose small change that she has, and told me that she already has a lot of money. Considering that the money is mostly 10 agorot pieces (each worth about 3 cents), she has saved up a remarkable sum.
-“What do you want to do with it”, I quizzed her.
-“Buy gifts.”
-“So what would you buy?”
-“For you, something big. A puzzle….. No, a newspaper. “ (And she named a magazine I often buy. “For Moshe,” (her nephew) “I want to buy a book.” And for her nieces plastic baby dishes, and a pacifier for her youngest niece.

She was very excited about the idea. Maybe I’ll even help her carry the plan out. It is so nice to see her thinking about someone else. And best is that she had thought of appropriate things for each of us.


MSNBC has an article on the Terrorist” who went on rampage in Jerusalem. May I ask why the word “Terrorist” is in quotation marks?

Wednesday, July 2, 2008

The “Opposite” Vacation

Most moms really don’t like school break, at least after a few weeks of vacation has passed. They enjoy doing things with their children that there is no time for during the year… but the noise, the “Mommy, I’m bored..” gets a bit nerve wracking after a while. And the mess… constantly you have to remind your teens that the place for trash is in the garbage can, and not everywhere else. So most Moms breathe a big relaxing sigh of relief when school restarts in September.
But by me it’s the opposite. The entire scholastic year I have spent preparing and adapting materials for Ricki’s studies, often to un-G-dly (G-d would not approve how I am wrecking my health) hours of the night
Now that summer is here, I will cut down on studies, and those I do with Ricki can be done with materials I have, not stuff that needs to be adapted from the regular curriculum. (YAY!!) I hope to spend a bit of time each day with Ricki reviewing reading and math, and most of the remaining time use for crafts, sports, and fun. I want to make cooking and other independent learning skills a priority. But my biggest priority is to make this all fun, for Ricki at least. It means that I will be busy, but, frankly, less than during the year, and without pressure.
Probably by the middle of the summer, when Ricki will be finished with her morning day-camp, I will be singing a different tune…. and yet, it is hard to envision the school year being less stressful. But I will probably also look forward to it, joining with Ricki in her pleasure of being in the eldest class of the school.

Tuesday, July 1, 2008

Food Addiction

For people who are overweight, food can be an addictive drug in every sense of the word “addictive”. Let’s look point by point:
1. One who is addicted to overeating (whether it is cakes, chocolate, or whatever) will overeat even though they are fully cognitive of the fact that this extra food is unhealthy for them.
2. In addition, they will overeat despite the fact that the food makes problems for them in the interpersonal sphere of their lives (family, jobs, etc.)
3. They have physical withdrawal symptoms if they stop overeating. And I am not talking about “empty tummy” rumbles, but headaches, weakness, etc.
4. They will lie to others (and themselves) regarding the amount that they eat. This may not be verbal, but a habit of overeating AFTER returning from a wedding (THERE they did not TOUCH the buffet…)
5. The overeating satisfies some emotional need, is a calming tool, etc. Or it gives the sleep-deprived a spurt of energy.

I saw this all so clearly today. I am now finally in the less pressured time of summer vacation (yes, less pressured. More on that tomorrow, hopefully….)

A perfect time to get back on my diet
. I dealt pretty well with the splitting headache that cropped up this morning. Today number5 threw me. I was upset with someone….I tried relaxation techniques, to no avail. Finally I had a small piece of cake. The tension went. The headache lessened. Now I am only left with the quilt, and the determination to try and find an alternative. I’ve already started to get more sleep (sleep deprivation being my major overeating trigger). For tension I will need other tools. Perhaps music?