A Sad Story- And Sadder Yet if We Do Nothing About It

One of the big news items this week in Israel is the rape of a 12 year old girl with Down syndrome. She was waiting outside a building for her father, and was drug forcibly and violated. Luckily the perpetrator was apparently caught. But of course that is not enough.
I have written about the need for awareness of the problem before (HERE).
ALL of our children need abuse-prevention education, and special-needs kids need it even more. Again, a few points:
- Usually the offender is not some weird-looking stranger, but someone that the child knows- a cousin, a brother’s friend, a family acquaintance, etc.
- Children need to be educated about :
1. their ability to say “NO!” (Ask the child which blouse they want the red or blue, and try to give them the one they didn’t ask for).
2. private areas (their own drawer), respect for privacy (knock on their door before entering), and private body areas (covered by a swimsuit)
3. good secrets and bad secrets, and to always tell Mom secrets, even if an adult says not to.
4. who it is appropriate to get gifts from
5. who to tell if someone touches them, tries to hurt them
6. what to do if someone tries to take them, tough them

A good start is Rav Horowitz’s lecture (see HERE).
- a one-time talk is not enough. Especially with special-needs children, repeats are needed. After this incident I AGAIN talked to Ricki. And I told her that there had been an incident. And this time I really think that she took it seriously.
- for special;-needs children/teens acting, puppets, and practicing reaction is imperative.

PLEASE DON’T WAIT. Educate your children TODAY!

A Stay-at-Home-Day

This morning Ricki’s aid called in to say that her child was sick and she would not be coming to school. That means no school for Ricki. Never mind that she had a final in geography today, a vaccination (which I hope she can still get tomorrow), and other various things. Never mind that I had other plans for the morning than being a baby-sitter for Ricki. I DID tell her to look for alternate care of her child for tomorrow, in case the child would still be under the weather.
So later today I will have to call the geography teacher to ask if I can give her the exam (and if not, what?), and phone a classmate to see if there are any announcements. It could be that today is the last (unofficially) day of formal studies. Tomorrow they will probably start rehearsals for the play/graduation ceremony that should be about three weeks from now.
Earlier, Ricki was being a real pest, but now she seems to have calmed down and is listening to music. Maybe her belligerence was due to the change in schedule, but I suspect her change in mood has more to do with her CONCERTA (ADHD med) kicking in. Until it begins to work she can be a rather ornery creature. That is no excuse, of course (and I reprove her), but it is also a rather consistent state of affairs in the early morning

“Mommy, You’re Different”

Yesterday Ricki caught two spelling mistakes (in Hebrew) that I had made. I am a terrible speller in English (I LOVE spellcheck!), and I fare considerably worse in Hebrew. So more than once my daughter Ricki (yes, my daughter with Down syndrome), has managed to catch my bloopers. Yesterday, having caught me with TWO mistakes, she turned to me and said: “Mom, You are Different”. Now was that a compliment? I guess she wants me to go for remedial work in spelling. Well, maybe I need it. I have “Americani syndrome”.

“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.

“I Have a Dream”: Parenting a Child with Down Syndrome

When watching a few clips yesterday about the inauguration, I saw, among other things, a clip from the “I have a Dream” speech of Martin L. King. It really gave me a sense of the great changes that have been wrought during the years I have resided on this planet.
But as a parent of a child with Down syndrome, I also have a dream:

I HAVE A DREAM that one day people will see my daughter, and see HER, not her diagnosis.

I have a dream that one day my daughter will be able to walk the street without being subjected to stares.

I have a dream that someday “retarded”, “imbecile”, and “moron” will be a simple description of intelligence, and not an insult.

I have a dream that the world will value people for being created in the image of G-d, and not for what they earn.

I have a dream that the government will someday have the foresight to realize that educating special needs children and adults to be independent is less costly than supporting non-independent adults, and act on that knowledge.

I have a dream that adults with Down syndrome will get a reasonable salary for the work that they do.

I have a dream that people will one day realize that my daughter is not just a burden, a “cosmic mistake”, but that she adds to the value of our lives and society.

And the only way to reach this dream is to wake up, and take a stand, as Rosa Parks did one day, and say “I am a person, oh not so different than you.”

The Journey and the Shabbas Candles

Yesterday’s post generated a comment which mentioned shabbas (Shabbat, Sabbath) candles, and I was suddenly reminded of events from 14 years ago, at the time of Ricki’s birth. And these events are a tiny picture of the journey each mother goes in coming to term with the diagnosis of Down syndrome in their child.
I did not know before giving birth to Ricki that she had Down syndrome. Sure, my mother-in-law had been warning me for years that I was at risk due to age, which I knew myself, but most of the women in my community have kids over age 35, and very few have babies with Down syndrome. And I didn’t do an amniocentesis, because I wouldn’t abort anyway. (So why take the even small risk of miscarriage?). So the first appraisement of our new situation was is the delivery room.
In the delivery room, the doctor told us that they would need to do genetic testing, as there was a possibility of Down syndrome. The illusion that it was only a “Possibility” lasted all of one hour. When I reached the regular maternity ward, I saw the pediatrician, and asked when they would be testing for the “Possibility” of Down syndrome. He answered: “I wish it was only a possibility. There is no real doubt that she has it; she has all the standard indicators of Down syndrome.” As a nurse, I realized that he would never have made such a statement if he was in doubt, and I acknowledged the fact of her diagnosis. But acknowledging and coming to term with it are two very different paths. The first involves the intelligence; the second is an emotional journey.
I gave birth on a Thursday morning, barely after the dawn. On thurday morning, on arrival to the maternity ward, a bed was found for me despite the floor being over-full. At least I had the privacy of drapes around the bed. But I am not a very out-wardly emotional person. And my crying was more internal than out.
I was in the hospital for the Sabbath. Our hospital, serving mostly an orthodox Jewish community, has a large maternity ward. In order to prevent fire hazards, all women who wish to light shabbas candles on Friday afternoon do so in the dining room, on a special tray set up there. When I went to light, I lit… and started praying as I do every week, for each of my offspring. Suddenly I could no longer restrain my tears. What do I pray for her? Obviously her heart condition (minor, only PDA) was a priority. But for my other children I pray for success in studies, that they eventually find a good spouse, have healthy kids…
At that time I had very little knowledge of the vast potential of children with Down syndrome. But I knew that her needs were great. From where do I start? What to ask for? I was in tears, and only the hands over my eyes (and luckily, everyone else’s hands over their eyes) gave me scant-very scant and insubstantial- privacy.
A week flew by, and the following Friday afternoon, I “prepared” myself. I was not going to break down crying in from of my kids. I didn’t want them to view Ricki’s birth as a tragedy. So I made sure that I was really 100% ready when I lit candles (no need to straighten my older daughter’s hair, put the tablecloth on the table, etc.). I was ready and able to flee to my room after lighting the candles, to cry there in the privacy of my pillow.
I lit the candles, and ran. On reaching my room I suddenly realized that there was no need. Over the preceding week, hope had entered. I had heard much more about Down syndrome. My daughter who the week before had lain listlessly like (excuse me for saying so, but that is how I had observed and felt)—like a piece of meat--- she had shown my already her vigorous spirit. She fought to turn her head side to side. I was not about to collapse in tears. Yes, there was still pain, there was still doubts and uncertainties… but the journey towards seeing Ricki as an individual human being, and one with potential, had begun.

PS Happy Chanukah!

Eugenics-Terrorists-Nazis- and Hyperbole

In general, some people bandy about certain terms with a lot of impudence. Terms like “Nazi”, Eugenics”, Terrorists”, are rather loaded (and loathed) terms. These words carry a history with them. This history leads to an emotional reaction on part of the listeners. Thus, these words have a strong power to influence people. Let’s look at a few:

Nazi- This word has been so over-used, that it maybe even doesn’t have such an emotional effect already. It always makes me cringe when people use this term blatantly for anything other than mass-murder of human beings in cold blood. Whether it is Arabs talking about the Israeli army, or settlers talking about evacuation of the settlements, to call these troops “Nazi” is wrong. Nazis were something much much worse than that.

Terrorists- This is a word that is out of fashion. The London press often has trouble calling muslim “militants”, “Gunmen”, and “freedom fighters” what they are: terrorists. Anyone who purposefully tries to kill non-combatants for political reasons is a terrorist.

Eugenics- Why people who are advocating killing all fetuses with Down syndrome object to the term “eugenics”, I don’t know. If they believe that it is permissible to murder fetuses that are not perfect, whether for societal, monetary, or discriminatory reasons, then that is the definition of “eugenics”! If they believe it to be correct, they should be proud to say they are promoters of “eugenics”. However, I feel that to accuse a private woman who chooses to abort, due to her unwillingness to deal with a special needs child as a person practicing “eugenics” is unfair. Nor would I call those advocating killing of fetuses, and doctors who persist in applying bleaker-than-reality pressure on mothers to abort, as” Nazis”. I would yes accuse them of discrimination, and point out that the road of eugenics IS a slippery and dangerous one.

Other stereotypes are well supported with the choice of words that we use. We need to consider carefully, and seriously, the situations before us. The human psyche is very complex, and generalizations are USUALLY not called for.

“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 ……..

“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!

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.)

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.