The True Believer- Placing Limits on Ourselves

A few years ago, when on a bus in Jerusalem, I was approached by a Christian missionary. I was rather surprised, since my outer appearance, being that of an ultra-orthodox (Jewish) believer should, I think, have given her pause. But it didn’t. Well, I didn’t mince my negative response. My belief in G-d and Judaism did not come to me by chance; I became a believer as part of a long and thought-out search for the Creator and truth. The lady who approached me was young, and so I tacked her up in my mind as a young enthusiast who did not have the astuteness of an adult (to realize that I am a rather poor candidate for conversion).
People mean well. Those of us who have a firm and fierce belief in G-d, often find ourselves wishing that we could share that belief with the rest of mankind. Just as the ex-drunkard wants to tell the man sleeping in the gutter that AA is a better path, just as the liberal democrat may have trouble conceiving that anyone could logically arrive at the decision to vote for McCain…. We are, the “true believers”, people with a message to share. The question of course, is if we really should approach people who have not asked or expressed any interest in our doing so. I would say “no”. In fact, I suspect that approaching people who have not expressed any interest, is giving that person the message that we think he is stupid, or without values, and is in itself one of the best ways to make them want to avoid becoming "religious".
Now, in case you are wondering what brought this post on, it was an incident on the bus on Tuesday. I was returning from swimming class with Ricki, when a non-religious woman started screaming at a religious woman to mind her own business, and that each person has the right to believe as she sees fit. To tell you the truth, I was crinching with embarresment. Now I don’t know what the religious lady said, whether it was an exhortation to dress more modestly (not that the appearance of the non-religious woman was that improper), or if she approached her about a matter of faith. [And since I was not privy to the initial exchange, I held back and did not offer my 2 cents.] And then, this incident reminded me of the many times at a retreat, an orthodox woman** will ask a non-religious speaker how is it (considering their experiences, etc) that they have not come to believe in God. I always groan when this happens. This is often embarrassing for the speaker (sometimes), takes the audience off-topic, and gives the speaker the feeling that he is only being viewed as “non-religious”. In the same category I place bloggers who comment on a blog of someone who does not believe, “You don’t know what you are missing.”
While it is true that some people do things by rote, and arrive at their beliefs solely by an emotional process, this is surely not true of everyone. And let’s take a look. Have you EVER seen a person so addressed stop and say: “Oh, Gee, I never thought of that before. You are so right!” Never. Not once have I seen this occur. Do we actually suppose that by exhorting or attacking someone in public, that we will cause them to love us and our way?!!???
If we really believe that our way is right, that it is a self-evident truth, we need not push it on anyone. Not on kids who have fallen off the path, and not on any non-religious people we meet. We have to assume that they have reasons for their choices in life. We only have to act like “menchen” (good, ethical people), in a way that causes others to sit up and notice: “Hey, He is a great person. I want to be like that.” Because not only is this the proper way to behave, but if anything will change our friends, this is it.

** There is always one “bird” like this at every retreat…….

Correction/Addition to Monday’s “I Was Surprised” post

Today I got up the nerve to jokingly comment to the music (student) teacher how surprised I had been that SHE was surprised with Ricki knowing about flutes, violins, etc, seeing that this IS kindergarten material…..She replied, “No. That’s not what I meant. I was surprised that she knew the names of some instruments that even my little brother doesn’t know, like castanets.” Well, that is better.

Rub-ADub- Dub….

Background information on hearing aids: (written in a previous post, July 24th)
This tiny piece of electronics costs about $3,000. And while Ricki 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.

And so I offer a quick ditty
(and it “ain’t” pretty) (the cadence is all off….)

Rub-adub-dub
Rub-adub-dub,
Hearing aid in the wash-tub,
Placed in a pocket,
Oh, Vay!! Not-it!
Got scrubbed squeky-clean.
But it doesn’t squek,
Doesn’t squak,
It doesn’t amplify any talk…..
Just a bit of a whir….
(Oh how I will it to stir!)

I’ll place it in the sun
(Wishfully thinking)
But my hopes are rapidly sinking….

$3,000 down the drain
(That’s quite a strain.)
Wish I had a chance to sort
The laundry again.
* * * * *
Well, once previously I got a good drying out to resurrect the aid, but that was a ½ second dip in soup. This was a full cycle of washer/dryer. Hmmm. Wish me luck!

Ricki and The Ferrocious Animals…..

Ricki has long had a love-hate relationship with animals. As I posted yesterday, Ricki at age 4 was VERY hesitant about even approaching a large cardboard box with 2 chicks inside. Not long after that, hoping that caring for animals would help Ricki develop some responsibilities, and some empathy, I endured a whole winter of gerbils in a cage in her room. (I write “endured” due to the smell………) But she was too scared to do anything really helpful, and I discovered quite quickly that this gerbil bit.
By age nine she was willing (at times) to come near smaller animals, but was much more hesitant about the larger ones.
Since then, she has always had a rather ambivalent relationship with anything alive on four legs. She enjoys watching from afar, but generally is terrified if they come too close.

[This may partly be due to a HUGE dog that, trying to be friendly, knocked her down (at age 4) on our way home from speech therapy.]

One of her older brothers (who is renting his own room) bought a dog about half a year ago. The next time he babysat for Ricki, he took her over to his flat. “Gosh, You would have thought I’d purchased a lion.”, was his wry comment on Ricki’s reaction. Half a year later, she was looking forward to seeing the dog on her visit to her brother… at least from a slight distance, though. Yet, despite all that, she got up the courage two years ago to try horseback riding when we visited my parents. Which all goes to show you, that Ricki is just as complex, just as unpredictable, as all the rest of us.

NOT Wordless Wdnesday-Regular post below

An Oldie, Not Moldy

This is Ricki at age almost 4 (ten years ago!), trying to get up enough corage to feed some chicks. Five minutes before, she had been on the sofa, a bit terrified. (continuation tomorow)

Musings of a Nurse

Sometimes it is very frustrating to be knowledgeable.
As a former nurse, and a today-parent, I have often found myself during Ricki’s hospitalizations, on the “other side of the fence”. I have found myself waiting ten minutes for a staff member to come and do something (like take an IV out) that I could do in a moment. I have been told condescending things by staff who don’t realize that I am just as knowledgeable as they are. So if I inform them that I am a bonafide nurse, they will usually treat me with a bit more respect.

It’s a bigger problem when you are NOT of the same profession, but you STILL know more. I have probably read more books and articles on Down syndrome than anyone else (or almost anyone else) in Israel. And I try and keep up with the latest news and practices. So imagine my frustration when an educator tells me I am not being “realistic”, about something that is known and accepted in England or the US at the major Down syndrome centers. So I tried telling them my credentials:
-Registered nurse
-Writer of two published articles on Down syndrome in an international magazine

It didn’t help too much, at first. I became the crazy mom who doesn’t realize that her daughter is retarded.

So now I state right off at the start that I KNOW she has serious problems, is not on the class level, etc.
That helps some….

But you know, some people (rarely- rarely- rarely) DO get it. One lady official who I have had fights with over the years, who years ago was pleading with me to have pity on my daughter and put her in special education, is today willing to help me see that Ricki gets the treatments she is entitled to in the school. Gee, I guess not only kids with Down syndrome can learn, so can administrators…..

icad reports that a man in Arizona got life imprison rather than the death sentence for cruelly killing a three-year old with a developmental disability. How much do you want to bet that if the child was normal, with parents who missed her, that this evil creature would have recieved the death penalty? Another example of our blood being only pink, not red......

Try This Tuesday-Speech Game

I am posting today over at 5 Minutes for Special Needs. Have a good day!

“I Was Really Surprised”(and so, Unfortunately, was I)

Some special-education-teacher students from our local teacher’s school are studying music therapy. So, I agreed to let Ricki be one of their “trial students” as they learn. Last week was her student teacher’s first session with Ricki. Ricki, as I had warned her, spent most of the time testing the waters, if the “teacher” would set limits or not. I gather that the “teacher” did, as this week she reported that Ricki had been a very active participant in the session. She added: “I was really surprised! She is AMAZING! She correctly identified the violin, piano, trumpet, flute, and drums on the picture I showed her. She knew the instrument names! And when I played a recording of the instruments, she was able to tell me which instrument made the sound!”
Well, I don’t know who was more surprised: her, or me! [I was shocked on realizing that she- - a future special-ed teacher - - didn’t expect a 14-year old teen with Down syndrome to recognize and distinguish between, a flute, trumpet, violin, drums, and piano!]
And PS. The “trumpet” was a saxophone. I labeled it correctly and told Ricki the correct name.

…..And then education authorities wonder why I would be so “stupid” as to choose inclusion over “special ed ……..

“OYY! The Medication!!!!!”

One of the “fun” aspects about having a child with ADHD (in Ricki’s case, in addition to her Down syndrome) is the need to give them their medicine before they go to school.
Ricki has what I call the Dafkanik (Hebrew for “on purpose”) form of ADHD. She is not hyper-active (although she is definitely not the typical laid-back type of kid with DS). Rather, she is “dafkah”: eager to start up with anyone and everyone. Without her medication, at home, Ricki can sometimes be “OK”. CAN. Usually she will start pushing, and trying to aggravate me, if I forget to give her the Concerta (a long-term release form of Ritalin) – and that behavior will prompt me to remember her meds. If I forget to give her the Concerta on a school morning…. well, that’s asking for trouble. In the school’s noisy, boisterous atmosphere, Ricki without Concerta tends to be a terror. She can push others over, scribble on other students’ notebooks, and the like. I have warned her aid that if Ricki looks aggressive, she should phone me and check if Ricki received her medication.
The good thing is that since our mornings fit in a fairly regular routine, I usually remember to give her the medicine. And if I am expecting a hectic or unusual start to the day, I will often post myself a reminder. The “rub” are those days that are a bit different. And this morning was one of them. Ricki had gotten up early. I helped her here and there with finding a skirt to wear, made her an egg for breakfast, and seeing that she was fine, sat down at the computer for a few moments of work. Suddenly I realized that Ricki had to be downstairs in 10 minutes for her ride to school. I finished brushing her hair (she wanted pig tails, and needs help with that), and as she was giving me a “goodbye” hug (yes, we are still having 3-minute hugs), she suddenly gave a “war whoop”. “OYY!! THE MEDS!!!”, I remembered. She quickly received them and was out the door. If I had remembered just a few minutes later, it would have been
“OYYYYYYYYYYYYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!”

“Oh, But These Kids are SO Loving!!”

If kids with Down syndrome are so loving, why does Ricki
-stick her tongue out at her brother
-purposely wipe her dirty hand on my skirt to make me mad (don't say I am "reading into it"- I saw the EVIL glint in her eyes)
-come home from school to write diatribes on whoever she is angry with

I laugh at this stereotype---because that is what it is, a stereotype
(although, in all fairness, she does have ADHD too….)
But lots of kids with Down syndrome get angry--- and I suspect the smarter ones… as they SEE what people are thinking of them, and it makes them MAD!

342/365

Since I started writing this blog, the earth has hurtled through space at about 18 miles a second (no, I’m not trying to take credit), and returned to the same place in the vastness of space. In the 365 days since November 14, 2007, I have made 342 posts, which is pretty good considering that I do not write on Shabbas.
Writing a blog has made me much more observant. When I initiated this venture, I was afraid that I would run out of ideas very quickly. And while some evenings I worried that I would be blogless the next day (“the what-in-the-world-am-I-going-to-write-about-syndrome”), it happened less frequently than I expected it to. I became more attuned to the smaller nuances in life around me. And of course there were the many times I noticed something, or something happened, and the little blog-master in my cranium snickered in glee: “OK, that’s good for a blog!”
But of course the topic is only part of it. Finding the time to write was often a problem, one that surely affected the potential quality of many posts. It is downright difficult to be articulate, clear, and interesting if you are writing on the run. [My “bad inclination” surely used the blog as an easy way to get me to avoid doing things that may well have been more important.] But then life is all an act of juggling wants, duties, and time limitations, isn’t it?
As a final note, I want to thank those who take the time to comment. It is the best encouragement a blogger can have! (And if you like what you read, please pass on my link!)

TDTTKYUAN

Are you plagued by TDTTKYUAN ? TDTTKYUAN- those darn things that keep you up at night- are of two types: those that apply before hitting the mattress, and those after your head is on the pillow.
Usually, but not always, the first breed of TDTTKYUAN is easier to deal with. Work schedules, school reports, preparing whatever for the morrow can usually be scheduled for easier hours if one has the foresight and the true will to do so. Sick kids are one kind of TDTTKYUAN that can be very trying, but often the other spouse can hit-pitch for you if one is reaching the point of utter exhaustion. My particular TDTTKYUAN is either reading (preventable), or preparing work for Ricki’s school day (which would be easier if teachers would let me know earlier their plans).
More insidious are those TDTTKYUAN that fall into the second category, the after-your-head-hits-the-pillow form. For younger moms, these are often caused by pregnancy-related issues: when will I give birth/will it hurt/what do I do with the toddler/etc. For Jewish moms, Pesach (Passover) cleaning is a frequent culprit (so today I did this, so tomorrow I will tackle XYZ, and when in the world will I get to scrubbing the fridge?). Decisions about schooling, medical matters, housing, can also be poured into this same soup.
The advantage of this type of TDTTKYUAN, is that it is often very easily dealt with. How? Try this 2-step way:
1. Promise yourself that tomorrow, in clear daylight, you will explore your options and try and come to a calculated decision.
2. Make a concerted effort to think about something else. (Here a discman with earphones and a nice soothing collection of music is a real boon.)
Another type of after-your-head-hits-the-pillow TDTTKYUAN are minor aches and pains. And it was one of these that plagued me last night. After dealing with the adaptation of Ricki’s geography material for today, I dove into bed, with only the bare minimum of sleep time left before the arrival of the new day. That’s when I noticed that my right arm hurt. Lately it has often been “protesting” when I reach up for things, but last night my elbow ached. Immediately my mind went into high gear: Is this the start of arthritis? Is this what I’ve always heard from older people about joints hurting in anticipation of the rain? And am I really “that” old????? After ten minutes, I turned to my other side (onto that arm), and bravo, the pain went. And I fell asleep. But I am left with the questions…….

To Catch the Moment

When I started this blog I anticipated writing some (see description of blog at right) about overweight and diets, and wrote about my weight (in my profile) “(and determined to change that!)”. Well, I have written almost zilch on the topic, and it seems that my determination was rather weak. My husband thinks I should just give up and resign myself that that is how I will stay. Well, I disagree. I am not willing to give up hope in this area.
For the last several days I have not been feeling 100%, having come down with the flue, and as a result have been eating very little in order to avoid flue symptoms. Suddenly I was easily able to overcome my urge to overeat. HOW? Because I had a priority that overrode the urge to eat. I think that the key must be to find that key that daily I can use to say and believe and remember: “it’s not worth it”. (Plus again, to reduce temptations and things that trigger them.)
The good thing is that as a result of my flue, I am sure my stomach has shrunk this last week (I was eating very little). So I decided that now is the time to catch the moment. To take this as an opportunity to try again. And why not try? I have nothing to lose by trying (besides- grin- a hefty number of kilos).

Oy, See What Anger does?

Anger caused me to loose a great picture to share with you. It could have been posted as a post-halloween picture... or in a psycodelic artwork museum. I could have posted it under “joke of the week”.
But no, yours truly lost her temper. And yelled. And went to rectify the damage. And gave stern warnings that said actions should not be repeated....

“WHY?”, you ask.
Oh. Yes.
Ricki got into my makeup.
My very limited supply.
And came showing me her purple eye-shadow neck and black mascara nose. And green-tinged cheeks.

I knew I shouldn’t have taken her to the make-up appointment I had on the day of the wedding last week.........

Language, Disabilities, and Convenience

In Dave Hingsburger’s blog yesterday, he writes:
“One of the theatre staff walked by and made reference to all the 'wheelchairs' waiting for the elevator. Now I'd been quiet about the elevator status, after all these things do happen. But, I was extremely pissed about being referred to as a 'wheelchair'. I am not my chair. It's the person in the chair that bought the ticket and will see the movie.”

A reader commented:
I want to point out another possible interpretation to being referred to as "wheelchairs," like the situation you described. Could it be that the word "person" is omitted not because a wheelchair-user is being objectified, but rather the opposite, that the humanness is so obvious that it doesn't need to be mentioned? Couldn't it be similar to saying "Look at all those cowboy hats!" or having a route designated for "motorcycles only."
Or I think of a situation in which I was insensitive. I was looking for someone I had never met in a crowded lobby, and when we met (I was late), he asked if I had trouble finding him. I replied, "No, I was told to look for the wheelchair, and here you are" (or something like that). Obviously I wasn't denying his humanity, but humanity was something he shared with 100 other people in the room. The wheelchair was what made him easy to recognize. Now, looking back, I see it may have been really rude. And I certainly don't mean to condone it. But at the same time, I wonder if the hurt derived from such statements may sometimes be due to false assumptions about those who said them or the attitudes behind them. I don't know. But it's bothering me, so I decided to share...

(Back to Me)
In Dave’s case, I believe that he was right: the omission of “people in” before “wheelchair” was indeed demeaning. But sometimes we are oversensitive, when a label is used as the easiest way to say something, without any demeaning intention. (But, for example, the commenter should have been told to look for the PERSON in the wheelchair”, or “he’s using a wheelchair.”)
My ex husband, who was dark-skinned, was a rarity in Israel, in the days before the Ethiopian immigration. When I had to ask someone to call him over from the men’s side of a wedding celebration (here men and women celebrate in separate spaces), it was much easier to call “a spade a spade”, and say would he please call to the lobby the religious guy who happens to be black. It has, to me, no more insulting connotations, than saying “the guy in the purple shirt” (which in white-shirted religious circles would be even more on an oddity than a black man).
So by the same token, if I would be at a play and another mother would ask me who my daughter is, I would reply “in the pink dress” if she was the only one with pink. Or even “the one in the pink furthest to the right”. But if they are ALL in pink, I would have no qualms saying “the girl with Down syndrome on the right”, because it IS a characteristic, and a very identifiable one, at that! (But I wouldn’t say “the Down syndrome on the right.”) It IS part of what she is, like dark-blond hair and short stature.

The New S’dom (Sodom)

Well, we have a new S’dom (Sodom); its name is Australia. Australia wants professionals to come help them out. But is you are a doctor, a midwife…. Don’t go: because if you have a child with Down syndrome, they will eventually kick you out. Even if that child was born in Australia while you were serving them.

3 Minute Goodbye

I’m really not sure what to make of this last development. All of a sudden, Ricki has started making her good-morning good-bye as she leaves for school into a three-minute drawn-out affair. Instead of a wave, goodbye, and maybe a quick hug, she wants long, repeated hugs. (Which, if the driver is honking downstairs, can be a bit exasperating….) She doesn’t seem any less willing to go to school, but this all puzzles me. I could think of all sorts of explanations, but have decided to not read into it, give her the hugs, and wake her up three minutes earlier…

The Useful (and the Tyrant)

I am a compulsive list-maker, and always have been. It’s probably in my genes. (If so, I hope that they are NOT on the 21st chromosome, or Ricky may be in REAL trouble…)
I have lists of almost everything: a list to check over when writing a supermarket shopping list, a list of craft supplies and their location in the closet, a list of weekly cleaning jobs, and the super-duper “Peasach (Passover) lists”*, which have a folder all of their own.
And then, there are the lists connected to Ricki:
-list of therapists (past and present)
-list of schoolwork I have to adapt
-list of things I want to study/do with her
-lists of skills needed to learn to reach independence
These lists are very useful. And tyrannical. Especially the last two. There are so many things that I want/need to do with Ricki, that it is neigh –impossible. The task seems overwhelming, hanging over my head like a sword of Damocles. At one point I saw that I would need to come to terms with the feelings that I MUST finish the things on the list. Because I can’t. (I often remark to friends, that any imaginative person has a problem. One can think up great ideas faster than they can be executed, which means that you’ll always be running in the red.)
So one day I decided that rather than being “to do” lists, these lists of Ricki would be “Good ideas when You have some time.” And that helps, especially with the list of “things I want to study/do with Ricki”. I am still struggling with not getting spooked out by the “independence skills” list. She is growing up fast, and time is going through the hour glass steadily and fast.

* what to buy/clean /etc. before Passover

Maturity and Tolerance… and the Wedding

One blogger’s sentence a few days ago caught my eye: “I was relieved that my husband is planning to vote the same as myself. I don’t think I could bear it otherwise…”
To say I was startled would be an understatement. In my mind, such a statement shows a lot of immaturity.

Our family is a bit of a rainbow: we have folks of different stripes and views. We span the spectrum from ultra-Orthodox observance to not-much-observance-at-all. My daughter who just got married is somewhere on that spectrum. When a non-religious friend of mine asked if she could bring her daughter to the wedding, to see what an “orthodox wedding” looks like, I laughed. “Well, you are more than welcome to bring her, but the wedding isn’t exactly going to be a standard orthodox wedding.”

So now I want to tell you what I enjoyed the most about the wedding. It was the way that the diverse members of the family all got along. One could see their maturity from the many accommodations that my daughter made in her plans, in order for her super-religious brothers to be able to participate… to the way that these brothers made an all-out effort to make the wedding a lively celebration, despite their differences. The differences are there. Half of the family would not eat of the food from the caterer. But the message we all shared was, “I may disagree with you, but gosh oh golly we love you.”
Teens are usually “true believers”: “there is one truth, and if you disagree with me, you are terrible.” I had, several years ago, teens who disagreed VERY vocally with each other. But they grew up. Both the very religious, and the not-religious, learned that you can have your principles, disagree with someone….. without demonizing him. You can get along, and enjoy the good things that the other person is doing.
As we were driving home after the wedding, my non-religious son said: you know what I liked best about the wedding? The older (orthodox) brothers. They were great.” And I couldn’t agree more.

The Morning After / Special Exposure Wednesday

It’s “the morning after” elections, and for us, the morning after the wedding. (Comments on the election in a moment.) Yesterday before leaving for the wedding, I snapped a picture of Ricki in her finery.
The wedding was very lively, and well-planned by my daughter and her groom. Even though it was in a very out-of-the-way place, I was warmed by the number of friends who made the effort to attend.
* * * * *
Although I had my doubts about Obama, specifically due to my doubt that he will be a supporter of Israel, I must say that America can say “We’ve come a long way, baby.”
I remember when we visited Florida as a child, seeing at gas stations three bathrooms:
Men
Women
Colored
(And I remember my parents having us all sit at the "colored" soda counter in the department store.)
The fact that America has elected a non-white president highlights the changes that have come over America in the intervening years (although not ALL of these changes have been for the better.)(When I read that he "is the president of the 'hip-hop' generation", I was NOT enthusiastic.) But America has come a long way.

A Wedding Wish

What does a mother want on the day of her daughter’s wedding? I suppose losing about 50 kilo before the evening would be nice…. But, seriously…

I desire that they should be happy together… really happy…
I pray that they should be a radiantly happy couple fifty years from now….
I hope that they should have long and healthy lives together,
I wish for them children , as soon as they want them,
Children who are smart, cute, healthy, and pleasant,.
Children who will walk in the ways of their people….
I desire for them a marriage of purity, love, and fidelity,
And a life with enough income to not feel strapped….
(and of course we won’t complain if they get better then that!)
And I wish for them good relations with relatives, friends, and neighbors.


Is anything else really important?

So why in G-d’s name does the whole day get caught up with make-up, hairdressers,
Bridal dresses, the wig?
OK, she needs it. But if something is amiss, a bit wrong, the fish salty, the seasoning off…..
I’ll hope I remember, that this is the icing.

The marriage’s the cake!

Appreciation

Ricki is learning the social subtleties of life. And appreciation.
Ricki received a few days ago a small birthday gift from one of her classmates. And for once, she felt the need to reciprocate. She went to her drawer, searched for something, and choose a very nice trinket she had been given by me as a prize. I noted that it was something fitting for an eighth grader. She then took a sheet of colored paper, wrote a letter (hope the friend will manage to decipher it….), and packed it all away to her school bag for tomorrow.

Affinity

I think that most of us who have special-needs children feel an affinity to others in the “same”, or similar boats. You can see another parent with a special needs child half-way across the room, catch their eye, look at your kid, back at theirs, and smile. They will always, almost always give a smile (though sometimes a wistful one) in return. But why should that be? Obviously because we feel in some way as a community that is a bit set off from others.
Why do I say “set off from others? I will give an example. If I would do that same eye movement to my orthodox Jewish neighbor, she wouldn’t know what I wanted. (Since the whole neighborhood is orthodox.) But if in Denver airport I would see such a person (as I happened to on my why back to Israel 2 years ago), not only would she share the smile, but she would offer me part of her kosher lunch as well! (Because, being part of the “club” she knows that there is nothing worth eating that can be bought Kosher in the airport….)
So why should we special-needs “folks” feel so set off from others? I think there are several reasons:
-The negative attitudes that many “outsiders” have of kids with special needs.
- The stressful schedules, and dependence on schedules of others. (I remember running one Purim (a holiday) morning to have my daughter do part of an IQ test, because I needed it, and the only other available date was months away….) People who have not shared that schuedule are sometimes hard-pressed to understand.
- the needing to fight for what you should be getting anyway…


But I think that the biggest factor is the maturity that having a disabled child brings. The realization that the small things in life are small. The perspective. And the ability to view even small progress, and imperfect progress, as progress.

I once went to speak to a mother who had a new baby with Down syndrome. Her neighbors were not very educated, and most had never even heard of Down syndrome. This new mom was scared that she would lose all her friends. I told her: “I don’t know about your old friends, but you will be entering a community where each and every one of the women is really REAL.” (And, by the way, she didn’t loose her old friends, either….)
But, we should not let one of our communties isolate the other ones in our lives. I still feel part of the orthodox community, the “appreciate nature” community, the … well, any of the labels I apply to myself.

[This is Ricki, learning courtesy of Grandma (who is in back), to be part of the "appriciate nature" community.]
And if one of our communities tries to oust us because of our special-needs child, then we have to either re-evaluate how much we want to be in it, or do some educating………

Dr. Jekyll and Mr. Hyde #2 (or Parenting Tip #309)

(Dr. Jekyll #1 is here)

Yesterday was a Dr. Jekyll/ Mr. Hyde day for Ricki. And she was a lot of Mr. Hyde. Home from school due to having been ill the day before (and so I was afraid she might still be ill…), yet feeling good, she had time on her hands.
Ricki was intent on playing her tape at loud volumes, irrespective of what others requested. Whatever struck her fancy, she demanded incessantly, cursing me if I did not comply. Finally, tired and fed up, I went at three in the afternoon to take an hour’s nap. Ricki, who was in the middle of badgering me to open the computer for her (which I had told her would only be done AFTER homework), suddenly stopped mid-sentence.
She turned around (apparently realizing that there was NO hope of getting computer time), and stomped off to the living room. From my bed I could hear her taking out her wrath on her imaginary friends. “You are NOT going to get computer. You have to do your homework!” “No, I do not allow!.” After a few minutes of this, she stopped, turned on her favorite song disc, and started singing. At 4 pm she was an adorable and willing homework student.

I think I should take naps more often…

But of course the real point is, that if your child knows that you will not change your mind, and that you will not continue to discuss the situation, it is much easier for him to change direction and calm down. [I know I have a tendency to continue to argue when I should just shut up…] It may take a few weeks before a child sees that you mean what you say, but it works!

The “Chinah”

Ricki’s sister is getting married soon, and since her chasan (groom) is of Moroccan-Jewish descent, we attended a “chinah” (pronounced “chee-na”) celebration last night, as per their custom. Not really being experienced in this (like not at all….), I tried to resurrect from my deteriorating middle-aged memory cells whatever I had heard of this in the past. All I came up with was something about dipping hands in various liquids, and the hands remaining stained for days afterwards. I immediately visualized Ricki taking “painted” hands and wiping them on one of her best dresses. So I cornered my neighbor, an important Sephardic Rabbi’s wife, in an effort to get highly needed information: “Does it wash out of clothing????” Her reply: “Gosh I don’t know. Our group of Sephardim doesn’t have this minchag (practice).” So just to play it safe, I dressed Ricki in her least-best good dress (the one she is about to outgrow).
In addition, to add to the interest of the evening, the important women on the groom’s side happen to be in the year of mourning for a relative who died just over a month ago, and they said that they are not allowed to even touch the concoction or its bowl. So my married step-daughter (“Y”) was chosen to do the honors of mixing the chinah, and applying it, albeit having no experience in it. The knowledgeable women would instruct us as we proceeded. [It was probably the first time in history that a fair-skinned, blond, blue-eyed lady had even done this procedure…but Y was a good sport.][O.K., O.K., that’s a stereotype, but ricki’s step-sister does NOT look very Moroccan.]
Most of the evening was spent eating and dancing, with Ricki having a great time playing the drums. (See a picture from yesterday’s post.) Y mixed the chinah early in the evening, and it was not a liquid, but a think paste. I asked what it was concocted of, and they answered “Herbs from India, mixed with perfumes.” Into the paste two gold-white candles were inserted, as well as a few candies.

The actual chinah part of the celebration was short. The bride and groom both came in, dressed in special traditional clothing, Family members picked up trays of fried pastries, and waved them in the air. (I have few doubts about what exacerbated Ricki’s intestinal upset the next day. No doubt she managed to sneak one of those pastries when I wasn’t paying attention….) At this point, gifts where given to the bride and groom from both sets of parents. Then Y, dipping her fingers in the chinah-paste, drew a round circle on the bride’s right palm, as well as the groom’s.

This was covered with a lacy white cover, to prevent it being wiped off.

Then a circle of chinah was placed on the hand of other participants (including myself), but it wasn’t covered, and we tried to keep it on for about a half-hour, which is the time it takes to stain the underlying skin. (And as regards Ricki, I simply warned Y just not to “do” Ricki’s palm.) And the women “warbled” in a high voice “Le le le le le le le”, something I have never even attempted to do. But I was in a sporting mood, had noticed that it was not really that complicated, so I even attempted, satisfactorily, a “warble” myself. (This tickled our bride’s sense of humor.)
So now you know what “chinah” is!

PS. I asked Koby’s relatives the origins of “chinah” celebrations. They only knew it as a sort of “good-luck” ceremony. I concluded that the origns are NOT very Jewish. A quick check at Wikopedia confirmed my suspicions: (under Moslem wedding customs):

“ An old tradition, now rarely observed, involves the women at the ceremony symbolically mourning the loss of the bride by doing the "wedding wail". The bride's dress is an ornate Caftan, and the bride's hands and feet are decorated in intricate lace-like patterns painted using a henna dye.”

Special Exposure Wednesday and Fourteen

This is, I am afraid, just a picture to wet your appetite! Last night we celebrated my older daughter’s “chee-nah”, which I will be posting about tomorrow. Here is a picture of Ricki having fun with a “durbuka” (goblet drum) she found there.

Fourteen is:
• The number of days in a fortnight.
• In traditional British units of weight, the number of pounds in a stone.
• A number 'encoded' in a lot of the music of Johann Sebastian Bach. Bach may have considered this number a sort of signature, since given A = 1, B = 2, C = 3, etc., then B + A + C + H = 14.
• The number of lines in a sonnet
• Also Ricki’s age!! (Today is her birthday by the Jewish calendar.)
She is “celebrating” by having an upset stomach (result of junk she ate last night at her sister’s “chinah” celebration--- hopefully more on that tomorrow.)

Try This Tuesday- Answer Mailbox

This idea originally comes from the NUMICON Math system, but I have found it very useful for many topics. Also, I made my own mailbox and didn't need to buy one.
First of all, you need to make a folding page as a mailbox, with a slit that you can put mail through. Make it look as much as your mailbox as possible.

I highly recommend laminating the sheet.
(To help the "box" stand upright, I put a small container on the inside bottom, which will be "my" side when in use.)


Then prepare questions and answers. This can be arithmetic problems / a picture-written word / any written question and answer. Cut them out (laminate??), and give him the answers (or the question). You take the second half of the cards.

Play:
You slip a card through the mail slot, saying something like:
“Mail for Ricki.”
“A letter for Ricki.”
“Special express telegram coming for Ricki.!!”

The child is then supposed to return the letter to you along with his answer. If the answer is wrong, say “Mistaken address!” and push it back through.

Ricki LOVES this game and has lots of fun while learning.

Points about Coming to Terms with a Diagnosis of Down Syndrome

I want to share with you something I wrote out for someone:
1. Acceptance of the Diagnosis Does Not Mean that You Have to be Pollyanna
I initially received the diagnosis of Ricki’s Down syndrome very well (maybe because I had a relative who for years had been telling me that if I kept on having kids eventually I'd have a Down….). However, I did wonder how long it would take until that thought “I had a baby with Down syndrome” would not be my first thought on arising in the morning. Eventually, after about three weeks, it happened. I was starting to accept it as part of our lives.
When Ricki was about two months old, I went to a friend's baby’s circumcision celebration.. (This in itself was perhaps a mistake. I was straining not to be jealous.) Someone commented about how "well" I was handling Ricki’s diagnosis. I turned to a friend who had lost a child to cancer, and said, "You know I prayed very hard for a girl this pregnancy. Sometimes I feel like SCREAMMING ‘G-d, this is not the type of girl I pleaded for.’" She told me that to be "accepting" is not saying, “Hey G-d, thanks so much for giving me this kid with DS. It is gulping and accepting it, and going on…."

2. Acceptance of the Diagnosis is Likely to Come Piecemeal, in Stages
Later, when Ricki was about 6 months old, and I was overwhelmed with therapies, Passover cleaning, etc., I was standing one day with her at the bus stop. I said "G-d, I just can't take this any more…" I paused. In a moment of self-reflection, I thought: "Ah, Rickismom, you want things to be easier? Who said it is to be easy???" And then and there I said to myself, “I am the mommy. I am deciding that therapy can wait three weeks till after Passover.” At this point in time, I was not only reaccepting the challenge, but empowering myself with the knowledge that I am the one who knows what is best for my family, including both myself and Ricki.

3 X’s

Ricki came home today with 3 X’s on her behavior chart. Three X’s in and of themselves, being only about a fifth of her points, might not be so bad. A lot depends on what she DID to get the three X’s…..
Now, usually when that happens, Ricki tries to “doctor” the page up by ripping out the offending area, or making the whole sheet get “lost”. (Pretty smart, if you ask me. Why lose out on computer time -the “consequences”- if I can just maybe convince Mom that I was well-behaved.)
Today she had done none of these, and was complaining that she didn’t feel so good. But when I asked her where her behavior sheet was, she said, “I don’t want you to see it; you’ll be angry.” ** Now THAT statement had me worried. Had she assaulted someone? Their possessions? I went to check the sheet.
It turns out that Ricki came home with a temperature of 38.5 C, and the three X’s had been because she hadn’t done her work during the last two periods. The aid even though she hadn’t realized that Ricki was sick, had noted that she seemed a bit under the weather….
So I sat Ricki down. “Ricki, I will only be angry when you misbehave. When you are sick, and can’t work, that is not called misbehaving.”

She had actually been very well behaved today… was trying SO hard to be good and not just managing….Perhaps her temperature knocked all her ADHD belligerence out of her, poor thing…….

** I just want to add that when she said “You’ll be mad”, she was saying “You won’t let me watch Computer”, or at worse, I would yell at her. Nothing worse.)

Fashion

Ricki is very concerned about being like everyone else in her class. If her father jokingly suggests doing something “not accepted” or standard for her peer group, she will make a “Who in the world gave you an idea like THAT?” look.
So this morning Ricki was looking at her new “good” pair of shoes (for Shabbas wear), and I overheard her saying “Miriam will see them and say ‘WOW, how smart!’” In fact, I would count her friends potential disapproval, the biggest factor in Ricki’s efforts to be clean and neat
. She is also very excited about the new dress she is getting for her sister’s wedding. Now, at an earlier age, she had a tendency (a VERY pronounced one), to react to wearing a full skirt by twirling and sitting on the floor. For that reason, I have avoided buying her full skirts for a few years. But now that she will be getting one for the wedding, I am trying to stress that “teens” (as opposed to LITTLE girls) DON’T sit on the floor. Hope I am not headed towards a disaster.

The Terrible Speller (or, Murder of the English Tongue)

My mom, seeing the first half of this title, will be sure, erroneously, that this post is about me. I am a terrible speller. The only D I ever received as a final grade was in spelling. But I was lucky; someone invented “spell-check”, and has made my life easier.
But this post is not about me. It is about the daily slaughter of the English tongue which I am witness to.
First, there are the people (including my own offspring) who use English words, thinking that they are new Hebrew terms. And they will invariably mispronounce it. (Rolling the “R” being the least problem here.)
Do you recognize “absurrrdit” as “absurd”? And “Food Professor” is not a new college instructor, but a food processor.

The next absurdity is the misspellings. And they pop up all over. In package instructions, advertisements, etc. You would think that people would spend a bit of change for an English proofreader……
So it should come as no surprise that coming home from a shoe store in the city center today, my adult daughter and I came over a grocery store with its name written in bold letters over the door:
“Ceaper Buing”


PS: “Disability Blog Carnival”#48 is posted over at Terri’s blog.

Ornery / Accepting

Yesterday afternoon I went with Ricki to buy her shoes for her sister’s wedding. She was in a rather ornery mood, as she often is when we shop. Usually she’ll do something a bit load, a bit strange, and little kids will stare at her. This makes her angry, she yells at the little toddlers who are watching her, and this collects an even bigger audience. She is getting better at all this, but very slowly…
We settled for a pair of shoes for the wedding, and then I decided to buy her school shoes for the winter as well. We were looking at blue shoes (there were brown and blue)- the color that would match her uniform. But since the first pair wasn’t pink, she didn’t like them, even though they were gorgeous and a perfect fit. So, a bit reluctantly, I let her try on another pair. She liked these. Now normally, I would let her have her choice, but this second pair had a strange type of closure that would not hold on to her foot very well. So I asked Ricki to reconsider. She wasn’t sure at all. Then I said: “Ricki, the choice is yours, but look and see how this shoe closes funny. Think about taking the other pair.” I was sure she wouldn’t agree, but amazingly she did. And in the end she was really very happy with them, putting them in place by her bed for the morning.

Not-Wordless (regular posts below) and Special-exposure Wednesday

This is ricki, not at halloween, but at Purim, dressed up as a bride, of course. She wants to be a bride. She wants to be a bride in real life some day. If she wants to get there, she will have to work on interpersonal relationships (ie., being nice to others.....)(Not like she was Monday evening.....)

Down Syndrome ABC

Please don’t look at this with a fine-toothed comb. I promised, so I did, but I don’t have the time to really polish it up….

Down Syndrome ABC

A is for attitude, achievements, and aims
(need good samples of each to really make gains.)
B is for Barriers, Bridges, and Books
(a blog just as good and fine as it looks.)
C is challenge, not a bad word
(Learning to deal with the real world.)
D is for Down syndrome, and any disability,
(Don’t stare as if she has horrendous disease!)
E is education, that’s what we want
(Not “babysitting” , but studies we hunt.)
F is ferocious, I warn you well
(a mother can advocate just really swell.)
G is generous, gracious (and fair)
(let us get money due us straight and square!)
H is happiness, home, and hope,
(do not doubt our ability to smile and cope.)
I is inclusion, “just” education
Slowly spreads round the world, nation to nation.
J is justice, which we pursue,
…wish the other side could step in my shoes.
K is for kindness
And L is for laughter,
M for memory, mnemonics, teaching that matters.
N is for Numicon, a math tool so fine
Teaching and having fun all at one time.
O is opportunities, we pray for more,
P, possibilities, (jobs we adore).
Q is quality in services, in life
R is rights, rights, and rights!
S is sorrow, we all feel at times
(just don’t dwell there; quick visits are fine)
T is triumph for each small gain,
U is united- reaching goals we attain.
V is vision, variety, vast,
Breaking the stereotypes of the past.
W, “Welcome to Holland”, for new moms, ideal
(X-actlly our feelings, that “piece” is so “real”)
Y is like “why”, a question without answer,
Z is for Zenith, and for Zooms, and zoos
(some normal things for the kid to do…)

What a Mistake....

Monday night and Tuesday was a holiday here in Israel. On Monday I forgot to give Ricki her Concerta (ADHD medication).What a mistake...
She went to synagogue with my daughter -in-law on Monday evening, and was TERRIBLY behaved. Atrocious.Pushed and shoved others, wouldn't share with others.
The worst thing is those there will think that she is always like that....

ABC's-1

I have two sets of readers (in general), the special-needs group and the Jewish-Israeli group. This is basically for the Jewish crowd. There are so many nuances, and Hebrew words here, I am not sure I could make it understandable to the special-needs crowd without a thesis! Without promising, I hope to make an ABC’s (just for fun) for my special-needs readers. (Although that will be much harder… here I could use English, Hebrew, or Yiddish words, giving me a lot of flexibility…)

Succoth ABC’s
A is for autumn, finally here,
B is for “booths” we erect every year.
C is for citron, a citrus in yellow,
D for decorations, both flashy and mellow.
E is for Esrog (Ethrog), Citron’s Israeli brother
F, families in Sukkah: Dad, kids, and Mother
G is for board games, played in the sukkah
H is hoshanas around the bimah.
I is for Isaac, the third spiritual guest,
J is for Jewish holidays-this is the best!
K is Kohelles, or Ecclesiastics,
L is for Lulav, tall, erect, long,
M is mizmorim, voices raised in song.
N is night-stars, seen through the schach,
O for ornaments, only those that are kosher.
P is for planning meals and trips,
Q is for queries about your lulav’s tip.
R is rambunctious grandsons finally a-slumber,
S for SUKKOS, seven days in their number.
T is for Torah we’ll celebrate with Simcha tomorrow,
U for ushpezim we will part from in sorrow.
V is for velvet Torah-covers on Simchas Torah
W for willows, to tie in fives, as a prayer,
Begging and Yelling , and pleading for rain.
Z, Zei Gezunt, a blessing for health,
And with that I am finished! That was enough!

Foreign Language Students (and Immigrants) Take Note(s)

Terri of Barriers, Bridges, and Books asks the question: “What have you learned or become that you might not have without and encounter with disability?”
If I would answer honestly, you might end up having a post the size of an abbreviated “War and Peace”…I could elaborate on learning acceptance, patience, learning to use the computer, etc etc., etc………
A funny answer, yet a true one, is that my mastery of Hebrew (I live in Israel) has increased ten fold. I joke with my new immigrant friends: “If you want to learn Hebrew really well, have a special needs child….
But I am not kidding here. I raised several children in the sunny country of the prophets before Ricki, and my Hebrew had reached a level that I could make “do” with. But I could “manage” because English is virtually the third language here, and how many serious discussions did I have in Hebrew anyway? “Put your shoes away.”, “I want two bottles of wine.” Just doesn’t need too big of an ability. But unlike my husband, who is a wiz at languages, I progressed slowly at best.
Fast forward to Ricki, age one and a half. Speech therapy. Years of speech therapy, therapy Mom sat in on and heard..
When Ricki turned seven, I hired a special once-a-week teacher for her. This teacher had aims that Ricki would know more than a basic pigeon Hebrew. She wanted her to learn literary words. Ricki did (and does). And so did Mom.
Then I had to fight half the country to get Ricki into inclusion, and then from a poor school to a more positive one. I had to advocate in Hebrew. In addition, I adapt most of Ricki’s work, which means that I have to read Hebrew texts and simplify them, all in good, properly spelled Hebrew. (And we are speaking her of a woman who could not write without “spell-check”, being that I am a terrible speller.) Words like “industrial revolution”, “capillaries”, “bluish” (as opposed to blue), and “miners” entered my wither-to raisin-dry (shrunken) vocabulary.
So if you want to learn a new language….take note, and at speech therapy…. take notes.

"If Only"

We had a lot of fun over Shabbas (Saturday). In addition to having my married children over, as well as most of their unmarried siblings, we went in the afternoon to visit my step-daughter and her family as well. There were so many things to notice:
-One of my (soon-to-be-married) daughter’s nieces looked exactly like my daughter did at that age. (Which is not too surprising, as she and her brother share a lot of features.)
-two grandkids born 3 days apart, are so different in abilities. One is laid –back and easy going, and so is not as advanced as his powerhouse cousin
-One of my black-haired sons and his black-haired wife has a GORGEOUS cute curly-haired blond baby girl. And every time I said this, I hoped the daughter in law who has a baby girl about the same age wasn’t listening.. ( I praised HER daughter for being such a calm baby.)

These things we all noticed.

I also noticed my step-daughter’s oldest child, a girl barely half a year older than Ricki.
So capable. So helpful.
My G-d, my life would be so different if Ricki was “normal”. Ricki could have been like that.

But for once I locked the pain away, and shut up. I didn’t share these thoughts with anyone. Besides, what good will an “if only” do? I don’t see any practical benefit.
But there are a lot of good things we would- the whole family- have missed out on if Ricki had been born “normal”:
-the ability to accept others as they are
-the knowledge that life doesn’t always give you things on a silver platter
-gratitude when things are normal—not taking that for granted

Guess you can’t have your cake and eat it too…..

YESH!!

“Yesh” –usually said “YESH!!!!!”- is a Hebrew slang that defies description. The nearest I can think of is “Wow, Right On, Whoopee”, or the like.
The first day of the Sukkos (Succoth) holiday we had very few family members with us, just my unmarried sons in the evening. In contrast, this Saturday two married sons were to show up. However, as the remaining siblings heard that their two brothers were coming, the third married son and the unmarried kids (plus one fiancée) decided not to miss out on the opportunity to spend the weekend together. So, although I could start cooking for the first day of the holiday just a day in advance, yesterday I was already deep into preparations….
Ricki usually asks me on Friday “who” is coming for Shabbas (Saturday), hoping that maybe one of the married couples (ie., someone with a BABY) are coming.When she heard that ALL THREE are coming, she let out a resounding “YESH!!!!!!!!!!!!!!!!!!!!”






[Picture of the decorations in our smaller, more rain-proof sukkah (has a movable roof-cover.) (Picture was taken before the holiday)]

The Truth

Tuesday afternoon, Ricki wanted to avoid study-play with me, so she conveniently went up to the roof patio to play games in the sukkah (Succoth-booth). Her ploy worked, as I really wanted to read, anyway. Studies could wait.
Late that night the long-predicted rain fell. And sukkot (plural of sukkah) are not exactly waterproof. (Actually, our downstairs one does have an emergency rain cover. But not the one on the roof.).
So early on Wednesday morning, Ricki went up to the roof, and came down with the games. “Mom the games were in the rain, They’re wet.”
-“Who on earth would leave toys in the sukkah when rain was expected.?!!?” (As if I didn’t know! Actually, in all fairness, I’m not sure anyone shared the weather report with her…)
-“I did.”

The truth.
Not “I dunno.”
Not her brother.
Acknowledgement of blame.
I think it’s the first time she’s done it. Five minutes later I called her into the room., and praised her, for telling the truth.

Not "wordless" Wednesday- regular post is below!

Special exposure Wednesday




These pictures are again, from our trip to Colorado a year and a half ago. I really have to get out and take some pictures here. (I have some, but they always include people who don't want to be posted on the net....)

An open letter to Mr. “End Down Syndrome”

I have a feeling that you have no realistic view of how independent and “thinking” a regular person with Down syndrome is. Again, my daughter was classified several years ago as having a low range of “mild” retardation, the norm for many children with Down syndrome. But she has had a good education. She is all of 14 years old.
So let me describe just a few minutes of this morning with her.
Ricki got up, bathed, and dressed (with clothes she had set out the evening before), entirely on her own. I pointed out that her vest was a bit crooked, and she changed it. [I made a mental notation that I should spend five minutes teaching her to check her appearance in the mirror after dressing, so that she can catch these mistakes herself.] She went to the kitchen, and seeing that her father had made some rice, took some, added milk, and heated it up in the microwave.
As I entered the area, she said “Mom, you should have some rice! It has calcium!”
-“No thanks, I’ll have my calcium with my coffee with milk.” She looked a bit puzzled. “Ricki, the calcium is in the milk, not the rice.”
“Oh, I see.”
A few minutes later she came to see what I was doing at the computer. She pretended to stick her finger in my coffee, and I remembered that I had not as yet given Ricki her daily dose of Concerta, which helps control Ricki’s ADHD. I smiled to myself, thinking how most of Ricki's problems are related to her ADHD, and not her low I.Q. [I wondered if you, Mr. EDS, would also advocate killing babies with ADHD if it could be detected. If so, maybe life would have been “easier” for their parents, but we would have missed out on a lot of the “doers” of the world.]
Next Ricki saw her new pink dress in the laundry basket. “Oh Mom, is it ready?!!?”
-“Ricki, you are not changing clothes. Today is cooler, save this dress for a warmer day.”
“OK, OK, MOM!! (teenage exasperation…)
I sent her to clean up a bit in the kitchen. Afterwards, she took out a book to read, albeit to an “imaginary friend” (much like a younger child). [Later, on going outside, or when her real friends show up, the imaginary friends disappear.]

Now please tell me.. Where is the “monstrosity” here? The “suffering”?
And to prevent a birth like hers, you would run the VERY risky path of telling parents who they can have a “choice” with, and who you have decided is not worth living?
Who gives you the right to say that my daughter’s life is not worth living?

Beneath the Wings… Beneath the Schach

As always, my holiday treat is to curl up with a book after the meal, and that is exactly what I did. It was an “adventure novel”, but one in which the characters each face their own set of problems, some worse, and some not-so-bad, although no easy thing either. The thing is, that the characters in the novel all open their eyes to their flaws and faulty thinking, the single people get married, and all is well in G-d’s world.
At one point a wife is puzzling over why she has so many tests .And of course it all works out in the end.
Oh, I wish it was like that in real life! (Now I am not talking about Ricki’s Down syndrome. I have long ago accepted that as a part of our lives.) I have enough challenges in my life that if I cared to share them, it could strike someone as a rather fantastic novel. (But these things involve others, so I have no right to “go public” with it.) Unlike the movies, and unlike novels, real life does not wrap up nicely after a short while. People struggle with various burdens that may or may not go away.
So G-d gives us a reminder: The Succoth-booth, topped with its flimsy schach (a covering of leaves, reeds). We are beneath the schach, under G-d’s watchfull eyes. He has His reasons for our tribulations; reasons we may not understand…….but He is with us. We are beneath the wings of His presence.

Gifts

I went out for a few moments yesterday evening to buy some gifts for my grandchildren, for the holiday. I usually buy books, nice laminated ones, an item my sons may not be able to afford. And even though most of these grandchildren speak Yiddish, I insist on buying Hebrew books. I want to push them to be fully bi-lingual, for two reasons. First, I myself do not know Yiddish, and two, being literate in the country’s language is a “must” as far as I am concerned.
One son didn’t like my intended choice of book… he wanted a Yiddish book with a cassette attached, probably the better to keep his daughter occupied. Well, thankfully I didn’t see any, so I got a classic “concepts” book instead. (Not the one he vetoed a different one.) I suspect that I will always view any and all gift purchases for educational value. That has been ingrained by years of buying books and toys for Ricki.(I have virtually amassed a toy/book store at home for her.) And since this book is laminated, and I hope it will last for all of his family, as it grows, so I think that my thinking is not so far off. Thus in the end, I got what I thought was best, not necessarily what the child wanted.
How about you? Do you buy practical or what the child desires?
I wish I had something better to write today, more interesting…. But I will have to stop here, as the day is short and the work is long….
PS. Above is a picture of our Succoth-booth. It is the least decorated we have had in years, partially because of a prediction of rain, and probably a sign as well of my 16 year old’s addiction to computer. His heart was simply not into creating a fancy succah. A pity. Hopefully today I will get him to spruce it up a bit.

The Easy Way

PS. This picture has nothing to do with this post. It is a picture of wild geraniums I took last year in the Rocky Mountains, and which showed up on my desktop this morning. I simply decided to share it with you. (Smile.)

Every morning as I enter the kitchen, I quickly mix up a cup of coffee and put it in the microwave to warm up. As it does, I tackle the few cups and dishes that pop up between 1:00 am and 6:30. My husband is a “night person”, and a few cups found scattered around from the previous evening add to the pile. Usually the time it takes me to wash the glasses and the time of the microwave to warm my coffee pretty well match.
This morning, as I entered the kitchen I was faced with the “problem” (such should be our problems!.....) of NO MICROWAVE. It had been unplugged and removed from the enclosed porch next to the kitchen, as part of the preliminary work of making a Succoth-booth there.
[We usually make two Succoth-booths: one on the roof, and one next to the kitchen. The one on the roof is the large, major one, and the one by the kitchen is for people who don’t want to climb up a floor just to drink a cup of coffee, as well as for extra sleeping space.]
Anyway, so I had to warm the water for my daily coffee “fix” with an electric kettle. That meant getting it out, and plugging it in. Oh, so much bother!
Isn’t it amazing how quickly we can get used to certain conveniences?
I remember how several years ago, when my in-laws came to visit, they stayed in a place not too near and not too far from us. They graciously provided us with money for taxis to and from their hotel in the city. When they left, I realized with shock as I boarded a bus to go into town, how quickly I had come to expect the luxury of a taxi. The taxi was three times as fast and 10 times the price. But I had become used to it, and it took a few times of riding the bus to return to the state that I felt it was “normal” to use the slower mode of transportation.
So why should it surprise us so deeply when our children opt for the “easy way” out? Why do half-done dishes, shoes tossed in the direction of a closet (rather than put inside), or a half- sentence of speech when we were hoping for a greater linguistic attainment, surprise us?
Our job is to teach the pleasure of a job well done, the merit of doing something in the proper way, and the happiness of a well-deserved compliment.

I don't know about anyone else.
Do you ever get sick of these photo montages of kids with Down syndrome?
They are almost always of babies and young children (rarely with adults or teens--)and often terribly long. An overkill. Which is why I liked the "R word-respect" blurb; it had adults, and also was short and to the point),

I mean, I suppose new parents need this, but I do not believe in deifying kids with Down syndrome. They are PEOPLE (and sometimes ornery ones, at that!).....

I suspect that those who worship them as "little angels" don't always see their individuality. If you say "Children like these are always loving....", you are not treating them as PEOPLE.

Busy, Busy….

I wish I had more time to get things done before the Sukkos holiday. Ricki is home from school today, and is “helping” (to keep me busy, for sure!). So far she has examined the new scenter in the bath (spilling half of it, making the bath VERY vanilla-y!).
But I AM waiting for the holiday. I imagine (after a meal, doing the dishes, etc,) curling up with a good book, and having time with the grandchildren. Sukkos is my favorite holiday. We eat outdoors in a booth (unless it rains…); we have time with the family and to enjoy the fall weather.
And mommy has a week off from preparing school stuff for Ricki. GREAT!!!

Motzai Yom Kippur Reflections

Yom Kippur is over, and the Sukkos festival is a few short days (5, to be exact) ahead. I wish my married kids would let me know which days of the holiday they plan to come for. (One has, two haven’t.). I usually cook fancier for the festivals than for Shabbas (ie., I make desert…), and I like to prepare what I know the arriving guests like. So it would help to know in advance.
Guess its time to make some phone calls…..anyway, I have to call my daughters –in-law and asked how they fasted.
Meanwhile, everyone I talked to had an easy fast. Perhaps because it was cooler than usual.

Meantime, it is already 4 hours since the end of the fast. Everyone has eaten; I have to go wash the dishes. Outside I hear a few hammer blows as the younger fathers of the neighborhood start working on their Sukkoth-booths. The air has a crisp fall edge to it. The skies are clear except for a few small clouds. Happy sounds come from nearby homes: everyone is glad and relieved that the fast is finished; we are looking ahead to Sukkos.
This year the prayers for substance had a stronger ring. The illusion that “I am safe, I have money in the bank” has been seen to be an effervescent dream-wish. There never is a guarantee of prosperity; this year it was easier to feel it. There is so much we need to pray for, and like a beggar with so few good deeds, and not nearly enough “hard cash” of true repentance, I came knocking at G-d’s door with a whole list of requests. But the essence of the Jew, and perhaps much of mankind, is to believe in the kindness and mercy of the Creator. So amazingly, after the fast, everyone is positive, confident, and hopeful that he was sealed for a “good year”.

About as I Expected…

Remember my September 19 post on the Anti- down-syndrome site? I had written them a comment, similar to my post, and they didn’t post my reply (moderation in effect).

I was actually very civil in my post.

. But since the didn’t make any more posts of their own, I fiqured that maybe.. maybe… maybe they hadn’t been to the blog and hadn’t seen my reply. But I suspected that it was not so. Well, they have posted again their hateful message, and my reply to the last post was not approved. And I am blocked from posting a reply..
About as I expected…..the *&%*#& cowards!

PS. Yom Kippur passed quietly; Ricki fasted about 90% (took a few lugs of water….). Not bad!

Rerun

I am supper-busy with the uppcoming fast/holidays/DD wedding, that I decided today to do a rerun. Probably few of you have read my posts from last November, so I picked out a good one to "rerun". Hope you enjoy!

"A GOOD WEEK"
On Saturday night, we make the "havdallah" ceremony, and with a whiff of fragrant spices we usher in a new week. "Have a good week!" we wish each other, as one son dashes out to his pizza delivery job, and my husband heads to the kitchen to do the pile of dishes that has built up over Shabbas (Saturday). I call a mildly protesting Ricki to come do some homework, and study for Monday's science test. Later in the evening I will turn on the computer, wondering (as I always do on Saturday night) if the globe managed to stay relatively sane over Shabbas.
Maybe this half-expectation that it is nigh-miraculous if there were no calamities over the last 25 hours (whether natural or man-made) is a post- 9/11 state of thinking. I know that for me this feeling that the world is a bit fragile has intensified since then.
However, is you know any history, than you know that man's cruelty to man has not increased over time, but rather the ability of a small group to wreck damage far out of proportion to their number. Man, since Cain and Abel, has used violence towards others as a tool. (Anyone who thinks that we have more of this today, should pursue Barbara Tuchman's book, A Distant Mirror, on the fourteenth century.)
Today, we have so many movements to stop violence. We teach non-bullying in schools, have peace rallies, etc., yet it is questionable how much any of this is helping. Perhaps it seems that we have an overly violent world because (as I mentioned above), even small miniscule minorities can terrorize large groups of people. But I think that even those of us who think of ourselves as "decent" people, are often only "decent" if it is convenient.
For example, in the very interesting book Choosing Naia, the opinion of certain therapists is that Down syndrome is a preventable disability (i.e., one can abort), and is a drain on the economy. I recently talked to a mother who was told by her daughter's therapists basically the same line, and that her daughter anyway won't "amount to much". Is it any wonder that she stopped taking her child to therapy? (Which of course is not a good way for her daughter to "amount to anything" either.)
The bottom line is, how much are we willing to go beyond our comfort zone, to help others ? To finance programs? Two months after today's headlines about the treatment of the mentally disabled in Serbia, how many of us will have done even one little thing about it? Or about guaranteeing the rights of the mentally challenged in our area? Or will we just shake our head at how dreadful it is, as we go back to our regular pursuits without a second thought?

The Bookstore’s New Employee

I am a reading addict, with no plans to entirely rid myself of the habit. So I am sure that it comes as no surprise to you that the gift I always request for holidays is not white desert wine, a new outfit, or even chocolate: only BOOKS. So near to any holiday -near enough that I think I can hold off reading till the holiday arrives—you’ll find me in the bookstore one unexpected, busy morning.
So with Yom Kippur coming up, and after that a frenzied few days till the Sukkos holidays, I decided to visit the bookstore while I still had a reasonable chance of fitting it in.
The bookstore I frequent is one of my favorite places, and not just because of the books. The proprietor told me once that he has a copy of the Hebrew translation of Babies with Down Syndrome, and I understood that in some way the topic was close to his heart… the child of a relative, or the like. It showed in his behavior.
He has always been great with Ricki, ignoring any misbehavior on her part, and speaking to her without any condescending tones. Recently he even gave me a children’s encyclopedia at cost price when I said it would help Ricki in school.
So today I was pleasantly pleased to see his new worker: a young woman with mental disability was at the desk, patiently applying his store’s sticker to the inside cover of new books. (He has such a turnover that this is probably at least a half-time job.) She put one of the newly-stickered books on my pile of intended purchases, so I moved them. She quickly said “I was only putting it there for a minute.” I realized that maybe she thought I didn’t want her touching my books, so I said “I don’t want to interfere in your work space..”
Such a simple idea for a job. Apparently the flux of people around her helps make the job a bit less boring, but it IS a job that was done by the proprietor until now. I hope I can someday find something good for Ricki(better than sticking stickers); I hope her rough-edged personality will smooth off by then, to help make it possible….

story cards-try this Tuesday

To help kids tell a story:
make some cards with photos/ pictures / signs for:

people your child knows
places they go
activities they do there
transportation
feeling faces (happy/sad/ surprised/ hot/ ill/ cold
weather
days of week

Then, after going somewhere, pick out cards which match what you did, and use them as prompts to help them tell the "story" of what they did

Housework vs. Spirituality

We are barely three days away from the holiest day of the Jewish year, Yom Kippur (the Day of Atonement). It is a day of fasting, and trying to correct our failings. This week is part of that process… the days leading up to the fast day are to be marked with introspection, asking forgiveness and making amends .
And here is Rickismom, completely absorbed in planning what I will cook for the upcoming Sukkot holidays, so I can send my son shopping at the supermarket tomorrow. In addition I am busy with laundry, preparing Ricki’s study materials, and wondering how on earth will I manage to sew a dress for Ricki for the holidays, especially since my bathroom porch is still in upheaval from the repairs, and is begging for me to “make order”. And tapping away at the side of my brain are a few valid atonement thoughts: “Less time reading blogs would have meant not getting so backlogged with work.”
“You know you have to work harder in your relationship with ‘X’….”
And so, the question often arises: How spiritually inclined can I be when I am caught up in the quicksand of everyday stuff?

Actually, it is not a contradiction. We all admire the humanitarian do-gooders of the world. But I suspect that we forget that doing “good” is usually a nitty-gritty series of tasks like preparing supper, and clothing those who need it. Is it any less of a good deed because it is for my family?

And, besides, if we want to reform ourselves, that honest voice pecking at the side of our brains as we wash the dishes is usually not too far off….

PS on Politics

The behavior of the politicians- the name calling, lying, insinuations-- just has we wondering how they ever dreampt up that these people are supposed to be our leaders!?!?!!

Ricki’s Shopping Expedition

Ricki occasionally gets a bit of loose change from me as spending money, or as a “prize”. She has always saved it away, and recently her brother and I counted the 10-agorot (2-cent) coins, and the few larger pieces. She had over$10 (ie., 40 shekels) in all.
So, with my encouragement, she went on her own to the little trinkets store next door. Twenty minutes later she came back with a small cheap computer game. I fetched from my closet some matching batteries, and discovered that the item did not work. I sent her back, explaining an important lesson: If you buy something and it doesn’t work, you return it. You are not going to be anybody’s sucker (intentional or not). The store happily exchanged it for a different item. It turned out that this item was broken. (I know the store owners, who are people that appreciate Ricki very much. The shoddy stuff was not given to her on purpose, it was bad luck. In fact, she has made small purchases there often. This was simply the first time she had gone with the sum of over a dollar.) I sent her back, but the store was closed for the weekend.
So on the next open day, I sent Ricki back, but with her 16 year-old brother as an “advisor”. I want her to have as much independence as possible, but I don’t want to drive the store owners crazy, either.
As I looked at this, I realized that teaching someone to shop is complicated:
- how to choose what to buy
- handling money
- returning objects
- realizing what has (needs) batteries, and calculating that into the purchase
- good deal/ bad deal… and calculating comparative/reasonable costs

Gee, I get “fuzzy mind” “I don’t want to deal with this” just thinking of the amount of stuff she will need to learn. I suspect that she may always be a bit dependent on the reasonableness of store owners… a dependency I would like to avoid. I’m not really sure yet how we will get there.

Hanging up the Laundry

As I mention in my last post, Ricki hangs laundry. Mind you, as with many other tasks that she attempts, its not 100% yet.
- First, any underwear in the basket I hide and hang later on my own, so that I can hang it on an “inside” line, not the outermost one in full public view. I’ll teach her that once she has basic “hanging” down pat.
-Perhaps in an effort to avoid dropping laundry, she tends to over-pin it… too many pins for each item.
-Her biggest problem so far is that she has a tendency to remove hung laundry before it is dry, excited at the prospect of taking the laundry down.
And tonight, I discovered why we suddenly have so few clothes pins: as she removed the still-damp floor mop rags she had hung barely an hour before, I saw her toss the pin downstairs……….

I think some intensive teaching is in order. I just hope she’s in the mood to listen…..

Adjusting to a “Down Syndrome” Diagnosis

Over at “Welcome to Illinois” there is an excellent post about not putting too much emphasis on the diagnosis. I would like to add what I think is a very pertinent point.
Many times when our children with Down syndrome are young, we have moments of despair, worry, and wondering how much Down syndrome will affect our child. At times, when we see the difference between the child and his “normal” peers, it can lead to “low-feelings”. This is NORMAL. The important thing is to try not to stay immersed in negative “mud” for too long.

(Now, if you, reader, are a “Oh I just Love Down syndrome” and “Iwould never change my child in the least, I am sorry, but I was NOT there as a new parent. I loved my daughter, and choose to ignore the “risks”, but I was not jumping up and down with joy over the diagnosis….)

But my real point is this. As your child grows, he becomes so much more than a “child with Down syndrome”. The child’s personality, actions, and thoughts become so much more important. I won’t say that sometimes I don’t get exasperated with Ricki (as I do with my other children as well…). I won’t say that the occasional fleeting thought of “Gee, I wish to G-d that she didn’t have DS” doesn’t flash through my mind. It does.

But I am much more aware of:
- her playing “teacher” and reading to her “students” a book
- her hanging the laundry
- her insistence on doing a piece of too-hard homework because the teacher said it was homework
- her laughing at a joke
- her insistence that her brother not DARE to bring his dog to our home (she’s scared)
- her pleasure to discover a gift of jewelry

These things OH SO MUCH make her seem to be what she IS: a teenage girl!

Can I Change?

The Jewish New Year has come and gone. Many people have made resolutions for the upcoming year. I haven’t yet, and I’m not so sure why not. Is it because I’ve been too busy to think? Or perhaps because honest appraisal of my life will lead to realizations that I must make changes in areas I prefer NOT to change? Or is it because I am already questioning my ability to make any meaningful changes at this point in my life?

I suspect that it is a bit of them all…..

One change I AM making. I am cutting out a LOT of the blogs that I follow. I enjoy them. But I do not have the time to read several blogs daily. So if you see that I stopped following your blog, please DON’T be insulted. If you ever have anything really interesting, or something you would like my comment on, just tag the link on to a comment here, and (without promising) I will try and check it out.