Friday, February 27, 2009

“Retarded Policemen”: Selling a Stereotype of Down Syndrome

Josh Perry, the actor who does the series of short films “retarded policeman” (posted on You Tube), has really gone too far. I never liked his series, and after seeing about two, decided that I could definitely forgo them. They are crass, and frankly only funny to people who enjoy crass/obscene things. However, someone posted #15 on an Autism/Asperger discussion board, and everyone responded very favorably. (I noticed this as it was listed on Google’s “Down syndrome” alert list.) Well, I at least, beg to differ.
I feel that the whole “retarded policeman” series is demeaning. I feel that Mr. Perry is using his own Down syndrome to sell the “permissibility” of things we would not condone in others. Somehow, he seems to feel that if a person with Down syndrome makes fun of retardation, of disability, and reinforces stereotypes, then that is somehow OK. He is essentially selling his own acting ability by reinforcing all the terrible stereotypes we would like to get away from.
If he did NOT have Down syndrome, wouldn’t we be up at arms about his portrayal of the intellectually impaired, and of disabilities? If the answer is yes, than he also has no excuse to sell this perverse view of Down syndrome. I think a bit more self-respect in our community is in order.

Thursday, February 26, 2009

Down Syndrome: The Not-Always Easy Track

It happens so often. Someone sees that your child has Down syndrome (or any other disability), and you can see (or you imagine you see) them wondering how you manage. They may look at you with pity.
So how does the special-needs parent react? We smile and say how we love our child (and we DO), and how well he is doing, how talented he is in some ways (and He IS). But even on those off days when we feel that we fell into a bottomless pit, we still put on the "it's nothing" act, and somewhere inside we wish people could accept our child AS IS, without being almost perfect, without him having to measure up to everyone else. And we wish that we could sometimes admit that this is not always an easy track to run on. But we worry that if we admit such a thing, it only strengthens those who say that their lives are not worth living, and so we shut up and smile and something inside cracks a little bit.
That is why parent groups are so great. Because there we can let the “Gosh, DS hurts” sometimes show. But occasionally , or even not so occasionally, even at parent groups, the parents of older children drown new parents in this positive tone that has not even the slightest tint of “it can some times be hard”. I guess they are trying to help the new parents see the tremendous possibilities that their tiny babies have. But what happens is that new parents are afraid to admit that they really didn’t WANT a kid with Down syndrome to start with, and that sometimes they are frustrated “out-of-their-minds”. So let’s sometimes be honest. Down syndrome can be a real pain at times. Now that does not mean that my child is not the light of my life. She is. And she has every right in the world to exist, blossom, and achieve.
And new parents, hear: Shoot for the stars. But know that if you feel like G-d kicked you in the shin, its Ok to be at that place occasionally. Just don’t stay there.

Wednesday, February 25, 2009

Special exposure Wednesday

These pictures are old- already a year and a half hass passed since I visited my parents in Colorado. But the scenery is as stunning as ever.
And this is a close-up of what Ricki's tee shirt read.
P.S. 2 other posts from today are below this one.


I read now on the news about the shooting in New Orleans. What shocks me is not the shooting (I bet the two shooters were aiming at each other...), but this:

"They had an ambulance out here picking the guy up off the street and people didn't stop vying for throws," Beals said.

Trinkets are still important to someone who has witnessed a shooting? This is were TV violence and violent computer games have brought us. A person dying or wounded is passe.......

Update on Ricki:

Yesterday I was a “meanie”, and kept Ricki up until she was latterly falling asleep at the table at 9:30 pm. She had been begging me to go to sleep since 8:30, and I kept her going that extra hour….and yes, as a result, she slept all night. GRIN. And so did I.
I am glad that her foot hurts less. As of last night she still could not walk on it at all, but I could see when handling the foot (to wrap/unwrap the elastic bandage around it) that it was less painful.
However, in addition to the mild sprain, she seems to have caught the flue and was throwing up for part of the day. While it made her feel worse, it has the positive side that at least she is “missing school” concurrently, and not twice.

Tuesday, February 24, 2009

The Frazzled Bleary-eyed Monster

Ricki pulled her ankle yesterday. She has been complaining a lot, but there is no discoloration and little swelling. However, she over-reacts to pain in general, and today is no exception. She will not bear weight on her ankle, which I understand, but she is overdoing things… Almost no one slept here last night as she cried half the night. (She had two long stretches of sleep. One was early in the evening,whicj the rest of us missed, and the second was 3:30 - 9:30 am, which the rest of us got, except for one frazzled bleary-eyed monster mom who had to crawl out between the covers at 7:00 to call the aide and driver to cancel school for Ricki.
All I can say is Kol HaCavod (You are GREAT) to all you moms of medically fragile kids and tiny nursing babies. I had forgotten what it is like to drag oneself out from beneath the blankets on a cold winter’s night at 2:30m or 3:00AM. I’m glad I don’t have to do it every day night !

Monday, February 23, 2009

Shaloch Manos

The day of Purim is a bare two weeks away. For those of you unfamiliar with Purim, it is SORT of like Halloween. SORT OF. Kids dress up, but rather than asking for treats from neighbors, everyone SENDS food to friends and neighbors. Also one gives charity, and hears the reading of the scroll of Ester.
Just as American holidays have become commercialized, so have ours. The stores are full to overflowing with costume accessories, and lavish (and expensive) baskets of edibles to be sent as mishloach manot (also called Shalach manos, the gifts of food). And of course the stores are pushing all sorts of noshari (candies, sweets) to be purchased for the occasion.
And as usual, I am refusing to be drawn into this “beat the Jones’s” mindset. There is no reason to become exorbitant, except to your child’s teachers (who, being an underpaid lot, deserve it) or a fiancée. I also refuse to send candy. I send what I would like to receive. Salad.
In amongst all the cookies, cake, chocolate, and canned pineapple, people I send to receive a small container of salad. Real food for real people. For those who celebrate Purim, try it. People will call you up and thank you. And if you’re sending to the teacher, you can throw in a bag of croutons. Or even better,almonds. Or, if you have to go sweet, halvah.
Of course, even if you send real food, you have the choice to “beat the Jones’s” as well. I have a friend who makes stuffed cabbage every year. (She’s from Hungarian background….) I can’t even begin to think about the amount of work that it entails. Keep it simple. Is showing off to your neighbors that you can make the fanciest and most original “gift” worth your health? (PS I am not accusing my friend of "showing off". She is such a giving person, she probably looks forward to this opportunity to lavish on others....)
Leave being fancy to your teenage daughters……..

Sunday, February 22, 2009

“Try , Try, and in the End You Succeed!” (Shoe-Tying)

Two years ago Ricki’s aide spent the better part of an hour each week working with Ricki on learning to tie shoelaces. Now, the aide had warned me, at the outset, that she had never “studied” how to teach tying shoelaces (something I found strange for a special-education degree holder), but since I also haven’t, I said “you are just as good as me……” Eventually after about half a year with only partial progress, I told the aide to move on to other pursuits, realizing rather belatedly that her talents could be used better in a different venure. It would seem that the generalized use of Velcro and elastic shoes has weakened the bow-tying ability of even “normal” people. This aide knew only the “special-ed bow” (two loops tied to a knot) rather than the regular method (reef knot). And Ricki was insisting on learning the “real” way (the way she sees me tying).

As an aside, a looks-to-me-to-be-good explanation of tying shoes can be found HERE, fifth post down (not the fourth post’s “Ian knot”). [IF I could have given the aide a Hebrew translation of this, perhaps the aide would have faired better, but I considered it “Too hard” to translate.]

And even though I had tucked away the above directions on teaching shoe tying (having seen the original post years ago, and having put it aside for “when I need it”), it was not a pressing issue for me, so I let it go. She doesn’t need really to tie her shoes (there being plenty of Velcro and elastic-laces shoes on the market). I WAS worried that someday Ricki’s nieces would ask her to tie a bow in their dress belt, but not worried enough, it would seem, to make it a priority high enough on my to-do list to actually get done…..
Then yesterday, I was studying the laws of Shabbas (Sabbath) with Ricki, and I wanted to explain to her that shoe tying bows are permitted; knots are not. So I got out an old shoe-lacing toy I had, to show here the difference. She suddenly grabbed the board, and tried to tie the laces. She was being very insistent; I could see that this matters to her. Vey quickly, I realized that her problem was two-fold:
1. She often forgot the first half-knot that the bow has to be placed on
2. She was faltering in the very last step, pulling the loops through. She would let go of the loops while trying to manipulate them. She only needed to be shown how she could push the loop with a finger and only then grab it.
So I reminded Ricki (as she made one attempt after another), to do the first step, and I begged her to let me show her the last step. For ten minutes I begged. Literally ten minutes. And she was continuously trying again and again. [I also realized as I watched her that any previous teaching I had done was not effective as I am left handed, and had never “flipped over” to the other side to show her.]
Finally she gave up on being the “I know everything” lady, and watched a demonstration, twice. She tried, and almost succeeded. I showed her where to push, and she tried again, and succeeded. And she repeated this several times.
“See, Ricki?! Try, try, and in the end you succeed!!
Now this is high on my list of priorities. It is so important to her, that I don’t want her to forget this. I hope to practice often, and plan on davka (“davka” being a Hebrew word meaning “on purpose”, but with “umphhy” emphasis) buying her some tie shoes this year.

Friday, February 20, 2009

25 Things About Me

My brother tagged me on facebook, so I officially am giving up (this once) to my I-don’t-care-if-you-tagged-me policy.
1. I studied cello for about a year or two in grade school and was terrible at it…..
2. I was my Dad’s scuba diving partner for several years and loved it.
3. But Barracudas in the water scared the living daylights out of me. My Dad used to laugh at my always turning around to see if one was following us….
4. I have large feet. Got the “crazy big foot gene” from both sides. Maybe I should file for disability…..(finding shoes to fit is atrocious….. My current solution is a specialty store in Jaffa)
5. I used to have a big collie-German shepard dog, called “Circe”. (Today I would NEVER use such a name.) I used to hope that some prince charming would notice me with the dog, but it didn’t work.
6. Careers considered:
Doctor (too long training)
Oceanographer (not too appropriate for the religious girl I was trying to become)
7 I eventually became a registered nurse.
8 I finished high school in 3 years. Hated it and got out when I could. Result is that I never learned to type, and therefore I “type” today using the “Columbus method” (find a key and land on it.)
9. Had almost no friends in grade school.
10. Used to write a lot of poetry, first piece published in 7th grade statewide English competition.
11. Climbed long’s Peak when pretty young (don’t remember exactly when, but was in grade school).
12. Took Ballet for several years (Mom allowed so I would learn to not fall over my feet). I used to “dance” to records in our living room, imagining I was a professional dancer. I still like dance.
13. One winter day (age 10??) I wore rubber boots without the shoes, and got frostbite on my toes.
14. I have 4 married children, and several unmarried.
15. I love almost any music other than rap (and that’s not music, anyway….)
16. I am a perfectionist. Terribly so. I keep bumping into reality…..
17. I learned Spanish for several years. I forgot it, word for word, as I learned Hebrew. So it seems that I have a 2-language mind. (Unlike my husband, who knows several languages.)
18. I can sew, but who has time?
19. My first husband was an American Ethiopian-Yeminite Jew. (very black). I never did like the stares. (Today he would not be stared at, there being many Ethiopians in Israel. THEN it was before the big influx of Ethiopians, and blacks were few and far between.) One Aunt asked me how I could marry a Jew, the other asked how could I marry a black.
20. As you might guess from 19, I am a convert to Judaism. In high school I used to walk around with a Hebrew bible. I think my Mom assumed it was a passing phase. I guess she had bad luck. I asked her once about it, and she said, “When a baby bird falls from the nest, he doesn’t fall that far.”
21. I hate cigarette smoke. But REALLY.
22. I never , but never, forward chain letters.
23.I love turtleneck sweaters (in the winter)
24. I seem to like the color purple. My favorite salads are chrain (horseradish with beets), and purple cabbage salad.
25. When I was in early grade school, we had no TV, and when we did get one, our viewing was limited to 2 hours weekly. (I highly recommend the practice.)

Thursday, February 19, 2009

Tuesday Travels

On Tuesday I went with Ricki to her swimming class. When we reached the bus stop, Ricki discovered that she had left her purse at home. I had an extra ticket prepared for such an eventuality, so I told Ricki I would pay for her. She was very upset, wanting to independently punch the card herself. But on this point I stood firm: If you forget your card, you forfeit the fun of punching it. On the way home she cautioned me before entering the bus: “Be sure not to sit by me.” Well, it seems that by little Miss Independent teenager I am rather a persona non gratis.
I just wonder if the people who overhear such statements have that figured out that this is due to her independent streak, or if they think I am a bug to my daughter, a terrible mom….LOL!

PS. Then, to top it off….. The next day, after I was “not wanted” for the bus ride to the eye doctor, on the way home her mood changed. On entering the bus she went way to the backof the bus, to the very last row. I found an excellent single seat next to the (exit) back door. The bus started filling up, and suddenly I heard Ricki calling me to sit by her. Envisioning how hard it would be once the bus became packed to get my girth to the exit from the back of the bus, and remembering all the times she had not wanted me to sit with her (even when no other seats were available), I told Ricki that I was staying put. Now people who overheard that SURELY thought me to be a callous mom: “She refuses to sit with her own child!”
Later I told Ricki that the reason I didn’t sit with her was not because I didn’t want to, but that it would have been hard later to exit. I don’t want her to think that I REALLY don’t want to join her.

Wednesday, February 18, 2009

Pom-Poms –(un)Wordless Wednesday

The other day I was in the toy store, and I found a diamond. A cheap 2 dollar diamond: a pair of pom-poms. By this I mean the cheerleaders’ type of big pom-pom.

Now why are they diamonds? Because they are the PERFECT gift for Ricki, who loves to dance. And if I want to keep her busy, they are the best way available. Her dancing (read exercise) has increased 50% this week as a result.
It gave me so much pleasure to be able to give her something that she would enjoy as much as she enjoys these pom-poms.

Tuesday, February 17, 2009

Stupidity Versus Challenge

Today Ricki is not going to school. No, it wasn’t cancelled, and she is not sick. Today eighth grade classes are taking a national exam on Mishnah Pirke Avot. I see no reason to “Thank” Ricki’s school for including her by bringing down their scholastic level on the national exams. So I am keeping her home today.
Now I’ve heard people in America calling for special students to be included in national exams, in order to push schools to promote more access to the curriculum for them. To me, it seems that such a plan is a great way for the inclusion movement to stab itself in the back. What school will gratefully accept the challenge of including a special needs child if that student will pull down their scholastic rating? If YOU were a principal, would you risk needed funding for your school by including a child with Down syndrome in your classrooms AND national exams pool?
I think much more sensible would be to rate children’s degree of disability, and give exams that provided extra credit (and only good credit) to schools that succeed in bringing the general curriculum to the special needs population. And those special exams should not just be on history and the like, but on vocabulary level, writing skills, and math. Lets push our schools to excellence, not punish them for taking in our special needs students.
* * * * * * *
And just a view of the start of this morning:
Knowing that I could sleep in late this morning, I stayed awake until some atrocious hour typing up an article that I had promised someone. So this morning at 8:45 I open my eyes to Ricki patiently standing by my bed. She was fully dressed, having taken her morning shower as well.
“Mom? Aren’t you going to get up? It’s ten o’clock already?”
“Yes, Ricki, I’m getting up. Look again at the clock. It’s not ten, but quarter to nine.” (Mental note to myself: We need to do some review work on telling time.)
I get up, and meanwhile, on her own, Ricki notices that the trash is full, and takes it down to empty it. While I sit down to quickly type up this blog, Ricki cooks for herself two slices of French toast (I hid the loaf so she shouldn’t make more than that, and I lit the stove as well because the pilot light doesn’t work). Now she’s started a fight with her imaginary friend. I hear her scolding her in a very authoritarian tone of voice. Guess I’ll have to quit here, give her something a bit more productive to do, and start my day.

Monday, February 16, 2009

Late for Her Ride (Again)

This morning Ricki was late for her taxi-ride for school. The driver probably was scowling, wondering why I don’t ever seem to have Ricki ready on time. If I was him, I would rightfully, emphatically be put-out at my lack of consideration.
In actuality, I DO have Ricki ready on time, every single morning. The problem is that RICKI isn’t ready. Every day it is something else. This morning she decided to hang hair elastic bands from her eyeglasses, deciding that this looked “cool”. I disagreed.
Yesterday, she took three minutes to usher her imaginary friends out the door as the taxi was waiting. The day before, she decided, five minutes before the driver came, to take a book to school. She took ten minutes to do so, and any interruptions and protestations on my part only lengthened the process.
Last week she had to hug me ten times before embarking down the stairs. And rushing her just doesn’t work. She is NOT interested.
I am trying to get her to head out at least five minutes before the driver is expected, but even with that, she sometimes finds ways to be late.

What are you saying? That I should send her down ten minutes in advance? So then she wanders around downstairs, sees something interesting on the corner, and disappears completely!

Sunday, February 15, 2009

The Runaway…

On Friday, Ricki had misbehaved in her last class. Knowing that the aide would write about it on her communication sheet, Ricki decided to leave the incriminating evidence behind. Rather than ride in her city-paid taxi home, she took to the pavement. She simply ran away. The aide called me, a bit frantic. I assured her that Ricki knew the way home quite well and that if she didn’t arrive home within a half hour I would send two of my sons out on bikes to round her up. She arrived home in 20 minutes. On her entry, I yelled at her “Why did you run away from the aid?!?” So a few minutes later, she ducked out the door, schlepping (dragging) her school bag behind her. About 40 minutes later, she reappeared.
“Hi! I’m home!”
She had gone BACK to the school, to see if she could still come back in the taxi. She couldn’t, and she had to trek home again by foot. At least she got some exercise! She certainly went to a lot of trouble to try and “correct” her misbehavior record. What she didn’t take into consideration was that the aid would tell me all of her misdeeds by way of a phone call……

Friday, February 13, 2009

When Beliefs Clash - A Parent’s View of Down syndrome and Marriage

[Note to any readers arriving from CTF: This was posted on the 13, for the 14th. I do not blog on Saturdays.]
I believe that Ricki has a right to love in her life, and the right to marry. I sometimes question whether her rather prickly personality will ever mellow enough to enable her to sustain a marriage, but I have hopes. Now if I were a libertarian, modern-age promoter of “free-living”, I would have no problems here. But I am not only a non-libertarian, but diametrically opposed to that type of life style. As an orthodox Jew, I believe in the unacceptability of any physical relationships outside of marriage. And I hope that Ricki will accept these values, which is the way I am educating her.
Now these two beliefs are not truly exclusive of each other. Ricki is of the educational level that by Jewish law she should be on a level to allow her to affirm her choice, and be party to marriage. I once heard a halachic decision (one according to Jewish law) by a very prominent Rabbi stating that if a person knows the amount of change coming to him, there is no problem with marriage. (And I don’t think he meant hard calculations, either.)
But we are not, in considering Ricki, dwelling on a theoretical question, but real lives of real people. Real marriages involve people who can be hurt. I have no illusions that Ricki will be able to manage completely on her own if married. Marriage can cause stress at times. She will need support if she hopes to live a happily married life. And the Rabbi I mentioned above said that the community must give the support needed for couples like this. My qualms are that I doubt that the needed support will actually be given. “Should be given”, and “Is given” are often poles apart.
First, the government here has decided that if a person is smart enough to get married, than they don’t need the financial support granted to person with intellectual disability. So if you want to get married, like most young people who get married, you need a job. But you need a job that you can SUPPORT yourself with. That’s the rub. How likely is Ricki to find a job which she will be able to fully support herself? [Looking around at what passes in Israel as “jobs for the intellectually impaired”, I have my doubts.]
In addition, with all the myriad problems facing the world and our community today, I suspect that enabling a couple with intellectual disabilities to get married will be low on the list of priorities.
There is also the problem as I mentioned in an earlier post, of procreation. I will not willingly subject Ricki to a situation where a child would be taken from her. Although I hope to teach her some aspects of child rearing, using Brookes Publishing’s book The Health and Wellness Program, I suspect that she will never be on the level (even if the social services would allow her to keep a child) to be 100% independent as a parent.
Generally, orthodoxy frowns on birth control. However, none of this problem is insurmountable. If Ricki is of the level to get married, and birth control is needed for that couple to manage, I doubt that she would have any trouble getting rabbinical permission for it. (And if she marries someone with Down syndrome, they are not likely to have children anyway.) But it is a factor that needs to be considered and dealt with.

My solution? My ideal dream?
I would like that the government, in addition to providing in-the-community housing, to make a few small rural communities. Each community would have several small cottages, or duplexes, for couples to live in. Work opportunities would be part of the package. In addition, some houses would belong to “normal” couples willing to live there as support resources, as their job. They would arrange some recreational facilities, continuing education opportunities, give marriage counseling, and be available for emergencies.
But why should the government or anyone else pay for that? Isn’t it easier to keep them celibate? And cheaper? Who cares that they are missing out on what most of us take for granted?

Spring Weather, Ricki’s “Gift”, and a Collect Phone Call

This evening I am giving you a brief glimpse into my world. Today was a warm and sunny day. And while I know we desperately need rain, I confess having lounged in my living room chair at noon today for an hour, just soaking up the warmth. Perhaps the main reason for this was my “gift” from Ricki: her cold.
Yes, definitely a “gift”, given with full intention. What else would you call it when a 14 year old, who has known to cover her mouth when coughing since age four refused to do so for the last several days?
* * * *
Today at two pm, I received a collect phone call. The caller did not give their name, but I took it anyway. My mind flashed immediately to my soldier son who has been on training maneuvers and out of phone access all week. I knew he would be arriving for the weekend either today or tomorrow; maybe he was calling collect to tell me when he would be arriving. Grr…. The collect call was a wrong number….. Don’t tell my husband, he will never understand why I wasted money to pick up a collect call when the caller didn’t give their name. But any mother will understand……

Thursday, February 12, 2009

Down syndrome: High Expectations

Mothering By the Seat of my Pants wrote the following comment:
"So many parents say Ds really isn't that big of deal, that our kids can do the same thing as everyone else--it just takes longer, etc. I want to believe that, but the truth is, when I look around, I see a lot people with Ds for whom this does not seem to be the case. Trying to be optimistic and realistic can be hard sometimes."
I think that what Chris has written here will ring true for any of us who have special needs children, especially with Down syndrome. I'd like to add a few comments.

Many times we, as parents, are faced with a public that doubts the ability of our children to do anything beyond the most basic level, if even that. We ourselves may have once viewed "those kids" in the same way. As our children grow, they surprise us, and those around us, with their abilities, accomplishments, perseverance, and sense of humor. We are often led to really think that our children can “do anything”. Indeed, we need to have confidence in our offspring’s ability to absorb new knowledge, and to learn to act on it.
Yet, and although I hate to say it, there are limits, in a practical world. Perhaps if we bombard our child 22 hours a day with enrichment opportunities, and push them to their fullest, they can accomplish more. But at what price?
I am NOT saying to not push and expect. However, let us ask ourselves a few questions:
1. Am I wrecking my relationships with other family members because I am involved in this child all of my waking hours?
2. Am I giving my child the message that he is only worthwhile if he is a star, an exceptional child?
3. Does my child have fun and friends in his life?

If you can answer all the above suitably, than you are OK. If not, you need to ask yourself if you can learn to love your child even though he is not perfect.

The fine line between “high expectations” and unrealistic ones is a very fine one. To find that line requires honesty. But it is essential to do so.
By all means, expect your child to achieve. But prepare your heart for the possibility that someday he will not learn certain things. Your job is to give your child the opportunities he needs to be independent, and happy in life. Your job is to help him learn. The results are not in your hands, but (at least in my belief) in G-d’s.

Wednesday, February 11, 2009

Parents, Offspring, and Voting

No, I am not going to tell you who I voted for. (None of your &&*^&$^$&^$&^ business.....)[Note for non-Israelis- Israeli elections were today]. I'm not going to even tell you who my sons voted for. But I do want to talk about young adults and their parents.
When I was a fresh voter in my first American election, I voted mostly for one party, and my parents at least half for the other. My parents were up-to-date on the contestants, their views, and their personalities. They often voted for the party they didn't belong to, if they felt that the people and issues involved warrented it.
I was a young leftist, and almost always voted democratic. And I would quiz my parents whom they were voting for. I don't know if they realized it at the time, but their answers were important to me. Even if I didn't agree with them, their opinions were noted with consideration.
I don't know if the same holds true for my sons. I asked my 2 youngest voters who they were chosing, and I receieved answers that surprised me. They pointed out certain concerns, and why they choose something that I would not suspect them of choosing.
I would not try to convince them other wise...because I doubt that arguing politics works, and it just causes fights. But I am glad that their choices were something I could swallow rather easily.

Tuesday, February 10, 2009

The “Closet” Behind the Bed

Ricki has an extra “closet” in her room: the space between her bed and the wall. Now she is not the only culprit. Most of my kids, at one time or another, thought that they could get away with discarding stuff behind the bed rather than getting up to throw it in the waste basket. Usually a few “clean-it-up-yourself” sessions would rectify 90% of the problem.
With Ricki, I have a difficulty, however. She discards books, tissues, pens, catsup bottles, etc. in such quantities as to make “clean-it-up-yourself” a bit unpractical. So usually I roll up my sleeves and corner Ricki at least to help me. Yesterday I decided that “enough was enough”, and I plan to do “after-the-bed” patrol much more frequently, and force her to do it herself.
* * * *

Ricki has a sense of humor. This morning she held a cold glass in her hand, and urged me to put it to my cheek, eager to see my reaction. This involves finding humor in a situation, foreseeing reactions, plan and effect. Not bad.

Monday, February 9, 2009

Down Syndrome and MASCOTS

Several bloggers such as “Welcome to Illinois”,
“ Girl in a Party Hat”,
and Mothering By the Seat of my Pants (love that title…LOL) have posted comments on situations where teens with Down syndrome were given their “moment to shine”. In these cases the child with Down syndrome is voted prom queen, given ten minutes on the basketball court, and the like. And their (the posters) feelings were very mixed. I understand that.
First, let us face reality. The basketball team is NOT going to put him on their regular lineup, unless he is VERY able. Basketball involves more than shooting hoops-- defense strategy, offensive plays.... and if he is not able to do that, and do it as well as the other boys on the team, you can't expect him to be on the regular lineup. IF he really can’t do it well.
Just because we want our children to be included does not mean that other people who have worked hard to achieve a goal, need to sacrifice their right to success because a person with Down syndrome wants to be like everyone else. Because he is NOT like everyone else. I hate to say that. But it is the terrible truth. He may have the same hopes and ambitions. But hopes and ambition is not what counts on the team. A clumsy teen without Down syndrome, full of love for basketball, would not be included on the team either, on sole basis of his desire to be so. In a case like this, if the team has the opportunity to put him on, in a way that the child with Down syndrome will be happy with it, why not? (Although I would argue that surely an opportunity could arise more than once every nine years…..)
In a case where the opportunity is given “gratis”, as a gift, it may be a bittersweet moment for the parents. I can live with that. Even when my daughter participated very well in class productions, it was bittersweet. It was still oh so very obvious to me how far she was behind her classmates. But she enjoys the productions. Should I deny her of it because she is not perfect, or doesn’t have a “part” well beyond her capabilities? I think not.
But when the schoolgirls at the production “cheered” her on (in a way not done for other performers), [Note: this was done by girls NOT in HER class. They, I think, would never act so patronizingly….] I asked them to stop.
I think that we have to carefully see and evaluate (as parents, when it affects our child) each case. For example, in searching for a school program for Ricki in high school, I investigated a program in a city about an hour’s drive away. In the end, I decided to not pursue this option. Why? The actual program was not much better than that in my city. It is true that the special-ed students have much more contact with “normal” classes than our local special-ed class. But it is, I heard, a rather “mascot-y” type of contact. And that is not worth traveling two hours daily. I do hope to convince our local high schools to work on establishing a contact between their students and the special-education classes.

* * * * * *
Perhaps the biggest qualm I have about “mascot” programs is that it allows the “normal” students to feel that they have given the student with Down syndrome what is “due” him. Sometimes I suspect that this blocks the attempt to stop and make a clear evaluation of what contribution the child or teen with Down syndrome REALLY CAN DO, without needing charity handouts. With a little bit of extra teaching, coaching, practice…. I suspect that there are many things our “special education” students can do on the regular terms of society. And I would like that evaluation to be done more often.

Sunday, February 8, 2009

The Obituary - What Constitutes our Remembrances?

My family recently sent me a copy of the obituary they had written up about my father, to send to places he had worked and the like. It detailed his service in the army in World War ІІ, his years of teaching, and hiking. But while it detailed very much what he did, it barely touched what he WAS. And perhaps that is correct, considering who it is intended for. Former students from Western Illinois University are probably looking at the obituary and thinking, yes, OK, I remember him, and it ends at that.
But I loved my Dad for his honesty, for his tickling games when we were kids, for our shared view from the top of Longs Peak.
For this reason, when I called my sister-in-law last week, sitting shiva for her father, I didn’t ask medical details. I said: “Tell me something good about Abe.”
-“It was all good.”
-“Even so, tell me something.”

And that opening let her speak about all the things she loved about her Dad. Which, I believe is the benefit of the mourning period. A noting of the loss, acknowledgement of the pain, a marking of a life well-lived.

In my many years of shiva (comforting the mourners) visits, I have seen people do very much the opposite. It may sometimes be convenient for people to “catch-up” with each other, if they haven’t seen each other for a while. But sometimes I remember terrible visits to mourners where I wanted to scream at other “consolers” for their insensitivity. The worst case was when I saw 2 neighbors discussing school supplies in front of a woman who had suddenly lost her husband a few days before. A mourning visit is not a place to satisfy one’s curiosity. How the person died, details of the illness…these are much less important than what he was, and the talk should center on the later.

Friday, February 6, 2009

Teaching Embroidery- Who Says That’s an “A”?

If you ask why I want to teach Ricki embroidery, I will explain that my mother is an excellent embroiderer. Her house is full of varying types of needlework, and not just your typical pieces. Some, for example, are based on Japanese pictures. I also used to embroider (back when I had the time) and I hope that soon I will be able to continue this pastime. When I was a newlywed I embroidered an entire tablecloth for the seder night, full of verses from the Hagada , pictures of grape bunches, and the like. [Unfortunately one year it become wet, and in the midst of the holiday I put it aside. By the week’s end it had mildew that ruined it. To replace it may well be my first embroidery project once I resume stiching.] So embroidery is in the family. But I have much better reasons to encourage Ricki to learn to stich. First, basic embroidery stich on pre-printed canvas webbing is really not very difficult, and it is an activity that is done at all ages. It is a pastime, that once learned, can suit Ricki all her life. It is not considered childish. Secondly, if she becomes reasonably proficient, it can be a potential side employment for her to sew canvases for sale. So I have good reasons to attempt to have Ricki learn simple embroidery, if she shows an aptitude for it, and if she enjoys it.

* * *
This week, because my husband was in mourning, people were coming to see him, so the living room had to be kept free. So I called up Ricki’s volunteer embroidery teacher and asked her not to come that week. So a few days later, I sat with her to give her a chance to practice her stitching.
So Ricki did her normal ploy of turning her back and not letting me help her. Now I don’t mind this when she is reasonably good at something. But when she is studying something new, this technique is one that can brew only failure, frustration, and despair.
I pleaded with her to do “together with me” only 5 stitches.

So I sat Ricki down and told her the story from the Talmud of a man who came from Persia to the sages, asking to be converted to Judaism. The man approached one sage, who started the conversion process by attempting to teach his student the Hebrew alphabet.
He wrote an aleph (letter A) on the paper, and said “See, this is an aleph.”
“Who says that this is an ‘aleph’?” queried the man.
The sage, rather surprised, decided to ignore the comment, and proceeded with the letter “beis” (B). However, the Persian persisted in his stubbornness: “Who says that is a ‘beis’?” The Rabbi drove him from his house, upset at the student’s lack of (needed) respect for his instructor.
The Persian went to a different scholar, and the process was repeated.
“Who says that’s an ‘aleph’ ? Who says that’s a ‘beis’ ?”
The second sage grasped the man’s earlobe, and gave it a tug.
Ai!! Ouch! My ear!!”
“Who says that this is an ear?”
“Everyone knows that it's an ear!”
“And ‘everyone’ knows that THIS is an ‘aleph’ !”

As I explained to Ricki, after the story, “everyone” knows certain things. But if you don’t happen to know it, if you have never studied it, you need to go to someone who can teach you. You don’t learn new things if you pretend to know things that you haven’t had a chance to learn yet.
Later she sat down and agreed to do some stitching with me. And she picked it up very quickly so far. But I think that the “Who says it’s an aleph?” story will be used again by me. It is a perfect example of the person who did not want to accept teaching.

Thursday, February 5, 2009

A Gift of Self

An acquaintance of mine is a sort of a “dabbler-in-all” of several professions. She has dabbled in the alternative medicine field, she runs exercise classes, and sells some items from her home. She has a small stature, but has an opinionated, fiery personality. She’s also the type of lady who when she shows up somewhere, is “in and out” as soon as she can. She is a busy -busy lady……
But I know her best for her first “profession”: teaching knitting, and doing arts and crafts work. So this last summer, I approached her about the possibility of working with Ricki this fall, teaching her embroidery and sewing skills. She agreed on a very reasonable price.
Than the financial crises hit, and I had to tell her that I could not hire her after all. Ricki’s swimming classes are expensive, and her favorite highlight of the week- drama and exercise clubs- are priorities. I just can’t afford more right now.
Suddenly a few weeks ago, she asked me if Ricki is free on Wednesday afternoons. Simply put, she had decided to teach Ricki anyway.

Now doesn’t it make your day to know that there ARE people like that out there? It sure made mine.

Wednesday, February 4, 2009

Special exposure Wednesday- Down syndrome reading

As Ricki's reading improves, so does her amount of real reading. She used to usually browse pictures when "reading". Nowadays she's likely to be reading the text.
One company here has started publishing books for teens with intellectual disabilities. I have only bought one (the other two being romance novels, and while I hope that Ricki finds love in her life, I don't expect her to meet her love on the street!) (Here we do "arranged" meetings, which works very well....).
I hope this publishing of special books continues. (This is extra important in Israel, bacause literary Hebrew is almost a different language from spoken Hebrew, and books for adults are a mile away from those for 3rd or 4th graders...) I know that in the US, Woodbine was once considering publishing such things. I am amazed that we beat them to it. Usually Israel is WAY behind the US in this type of thing.
By the way, studies have shown that reading/memory/reading are all linked, each reinforcing and affecting the others. So it is worth working on reading, even in our visually orientated entertainment society.

Tuesday, February 3, 2009


Yes, I am talking about myself. I am terribly stupid. I stayed up last night, exhausted from not enough sleep, watching some stuyiot (stupidities) online.
A loss of valuable time, a loss of sleep. And that will make dieting harder.
To top things off, I awoke late, and had to rush Ricki (poor thing, wasn’t HER fault) to get her off to school on time.
I thought I had a normal IQ. Wonder where it is hiding???????

Monday, February 2, 2009

A Different Type of “Salad Day”

Often Ricki is in the kitchen, but usually it’s just to fry an egg or heat up some soya patty in the microwave. Sometimes I have her help me make soup or salad, peeling and cutting up the vegetables. Up until now, however, her cutting of vegetables has tended to be rather big.
So the last time I did a salad with Ricki, I decided to tackle the “too big pieces” problem. I suddenly realized that the problem was that she was, in essence, (rightfully) scared of the knife. I wanted to show her how she could cut slowly, near her fingers in a way that would be safe, and she was insisting on doing it “herself” without help. Finally I managed to convince her to watch a demonstration or two, and from then on her cutting size decreased by about 30%, making a significant difference.
But the hardest part was convincing her that it is OK to watch and learn, that it is no crime to not know something at the outset.

Back to Push-ups

My son David saw yesterday that he was not needed here any more for help regarding my husband’s shiva (mourning), so he returned early to his base. He didn’t want to miss out on training, even if it means doing pushups here and there…..

Sunday, February 1, 2009


If you have a young child with special needs, don’t assume that your other children will be “fair” to the kids with special needs. They won’t. Especially not when they are teenagers.
You know how teenage boys love to torture sibling kid sisters? Well I don’t know what excuse Ricki’s brother (not telling you which one….) has, but he was being a real pest at the shabbas meals. Simply put, he was pestering Ricki no end, and was being entertained (as only male teens are….), by her reactions. He was not really listening to my protests (he kept changing tactics, doing the same type of things, but in new, creative ways. He only stopped when his two bothers told him that he was really going TOO far in tormenting her. But it was enlightening to hear Ricki giving him a “piece of her mind”. She was lecturing him in the same words, same tones, as any junior high student would use. But when she called him “mongol”, I told her off. I told her that ANY words meant as an insult, even if it is only “Gingi” (“redhead”), I don’t allow.
But this shows that somewhere she has heard the word, and hears it as an insult. I don’t know if she realizes that it is used as another name for Down syndrome. She also says sometimes, “YOU have Down syndrome”, meaning it as an insult.
So I sat her down this evening, as I have several times already, and told her that yes, she has Down syndrome, and yes she is different than others, just as EVERYBODY is different in SOMETHNG. I told her that Down syndrome is how G-d chose to make her, and that it is not bad, just different. She knows she has Down syndrome (as much as she denies it at times); I just hope that she can see it in a positive light. But that will mostly depend on factors well beyond my control.