A Really Cheeky Kid…./ My Sweet daughter / The ADHD mode

Three viginets of Ricki
On Friday night we had some of the family over, and my husband decided to “dress up” his recitation of Kiddush (blessing over wine) with a bit of chazonut (trills in singing). Half of the siblings where rolling their eyes over the extremely long recitation, and Ricki was making a “what in the world are you doing ?” movement with her hand. (Sorry, it’s an Israeli gesture, palm up, a bit hard to describe.)
The next morning, it happened that Ricki had to make her own Kiddush. Suddenly in the middle, she smiled, looked askance at her Dad, and started adding in some trills. She had such an impish grin on her face. A cheeky kid, this one.

This morning my daughter woke up “wet”. I was still asleep, and my husband panicked.(He didn’t realize that Ricki is fully capable of handling the situation herself.) He started yelling at me to get up. That’s when I overheard Ricki: “SHHH Dad, Mommy’s sleeping…….”

So a half hour later I awoke. I went to the kitchen to light the stove with Ricki. She was in full I-need-my-Ritalin mode: not willing to listen, pushing stuff around, and purposefully trying to to anger me. As she left for school (having received her meds, but they had not taken effect yet) she left her eyeglasses on the table, despite my reminder to wear them. Finally a warning of “No computer today if you go to school without the eyeglasses” got her to trudge back up the stairs to retrieve them.

In short: just as varied, just as unpredictable as any of my teens….

For anyone following the statistics debate from England

Finally, a definitive well-thought-out analysis (plus opinion) from Down's ed:
http://blogs.downsed.org/frank/2008/11/informed-choice.html

Sad News

We were so sorry to hear the bad news about the Holtzberg couple killed at Beit Chabad in India. Outr new son-in-law was a guest of their two years ago on Passover. In five years they have undoubtably fed thousands of guests. May their families be consoled.

I Never Thought…

How many times when I went to visit mourners have I heard the line: “I never thought he was going to die.” Or perhaps, its twin sister statement: “He wasn’t the type of person to die.” Many many times. And that is how I feel about my father.
Now who are we kidding? Do we think that any one of us will escape death? Intellectually perhaps not, but emotionally, contemplating death is something we would rather ignore and/or postpone. So much that by now I have probably lost half of my readers….
But when it comes to parents, I think there is something else in play. Our sages tell us that we should honor and fear our parents (which is a commandment of the Torah), not only as a mitzvah (commandment), but because if we do not honor them, if we can not be grateful for the life our parents gave us, we are unlikely to be grateful to G-d. In a way, our parents are our image of G-d. Indeed, usually a young child will “worship” his parents: they can do no wrong. As a father said to his friend: If you want to feel what worship is, have a son.
Now eventually we grow up, and unfortunately learn that our parents are human, and hopefully some where along the way, get a more sophisticated view of the Omnipresent. But somehow it seems that some of that uniqueness of our parents and their love for us, leads to our difficulty in accepting the reality that they are not here forever.
* * * * * * * * *
I would like to add a word of advice to anyone who has parents who live far from them. I know of many cases where sons and daughters visit their parent when the parent is on their deathbed. Now there is nothing bad about that. But don’t wait for that. And if you have money to only visit rarely, go when your parents are well enough to enjoy your visit.
My Dad battled cancer three times over the last several years. When he got sick the third time, I resolved to go see him, despite the cost, as soon as I could. And even though he appeared to get better after a while, I went a year and a half ago to visit. I decided that I wanted to see him while we could enjoy each other’s company. We did a bit of walking together. He showed me a few of his favorite movies. We looked at family picture albums together. I am forever grateful that I did so. It was good for him, and healing for me.

If I had waited for him to get “really sick”, I would not have seen him at all.



My father with Ricki a year and a half ago.

My Dad

Almost a year ago, on my dad’s birthday, I posted about my father, Anything But Typical [There you will find interesting stories of how we were raised. This post is more about personality.]. I didn't dream last year that he, even with his cancer, would be dead less than a year later. And he was definitely not typical.
First of all, my Dad was a person of integrity. And he expected no less of us his children, and of his students. For many years he was a teacher (professor) of Organic Chemistry (at Western Illinois University). He must have been an impressive teacher, because any college student from WIU who heard that I was the “faculty brat” daughter of Professor Shelton was likely to look at me in awe. I know that some of his students were pre-med, and my Dad explained to me once why he would flunk any student caught cheating on a chemistry exam: “I don’t want a doctor in twenty years who cheated in school.” And honesty and integrity were the bread-and-butter we grew up on. Once (in my hippie-ish days) I bought some posters in a store, but was lacking 10cents. I told the seller I would bring the money in next time I came, and since it was a buy of a few items, he agreed. Well, the next day I arrived with the money, and the owner called me “honest Abe”. He had never expected me to pay the small debt. I was amazed at his amazement. To me it was self-understood that you pay what you owe, and you do what you promise.
My Dad attracted attention, with his tall stature, and straight bearing. But he didn’t run after the limelight. He was not the “look at me” type of person. He was quiet and thoughtful generally, not the loud, attention-seeking person. He also had a sense of humor. Again, not the raucous guffaws, but a more refined chuckle over the ironies in life or the nature of man.
Most notable about my father, however, was that he encouraged us to excel only by radiating his confidence in us. Once I received a “D” on a midterm in physics, a fact I had concealed from him, knowing that he would be disappointed. The night before the final I “hit the books”, and while studying, he happened to enter the room. He looked over my shoulder, saw the mark, but said nothing. No “how disappointed”. No recriminations. (I Aced the test, thus getting a B for the course.) However, we understood implicitly that he expected of us to do our best. Also he never played the “comparison game”. My elder brother is much more intelligent then I am. I was never given the feeling that I must get straight A’s like he did, or that I was a less valuable human being.
Now all of the above does not mean that my father and I saw eye-to-eye. He was an affirmed atheist, while I definitely am not. And his ethical integrity led him to positions that I do not agree with. But he was not the “believe like me” type of personality. He accepted my many differences from what his dreams for me probably were with composure and equanimity.

And how do I best remember him? Standing in front of the fireplace of our childhood home, a glass of dry wine in hand, and Bruegel’s “hunters in the snow” behind him.
So, as you see, he was anything but typical.

Prayers and Hope

All our hope and prayers for the captives in India, including the Chabad Rav and his wife.

I will Not be posting for a few days

I just received the news that my dear father died yesterday in the states. And while I will not be able to go to the funneral (and regular hilchot avelut do not apply l'gierim -certain non-standard mourning practices apply in my case), I will be offline for a few days.
He was an outstanding person, and I will write about him after this week.

“You’ve Come a Long Way Baby” (With Apologies)

The apologies are two:
1. For using the line from such a sexist advertisement
2. For using the term “baby” in connection with Ricki

However, Ricki has come a long way. As recently as two years ago, going to the supermarket with her was akin to taking a course in Kamikaze piloting: Not for the faint of heart. She would be likely to do any/all of the following:
-beg (begbegbegbegbegbegbegbegbeg) for me to buy her a drink, a candy, or the like.(Even if she just had one. [And this would be done in a tone of voice indicating that she had just arrived from Biafra, and people would look at me with dagger looks, wondering why I was torturing that poor kid with Down syndrome. More than once people have offered to pay for the drink.] And not only did she beg, but even if I would refuse, she would go and open the drink herself.
-sit on the floor
-open packages of toys/food, those spreading the contents around.
-every few moments come to me with a request to buy “this” , an item taken off a shelf who knows where from…..

Anyway, after a few such excursions, I started seriously doing behavior work with her.

Yesterday we went to the supermarket, the first time in a LONG time.
-She begged for drink , but less, and (barely) refrained from opening any bottles
-She did not ask for a lot of stuff, and didn’t take things off the shelves
-no sitting on the floor
- she almost opened a package of marshmallows, but refrained in the end

All in all, she was quite good.
PROGRESS

(Of course, she grapped candy when she was on her own in the small local store a week ago, but lets not dwell on that right now….)

That Little Smidgen of Independence-Part Two

[Note:Please read yesterday’s post That Little Smidgen of Independence-Part One if you haven’t yet, before continuing.]
I think that yesterday’s idea leads one to a very important point for those of us connected in any way to the “disability” world. We all want that little smidgen of independence, control over our selves and our lives…. Yet the “I AM” of a person with disabilities (especially if it is a person with intellectual disability) is something so routinely ignored and obliterated that people are genuinely surprised when the person dares raise his voice in protest.
Now what I am writing next is more for parents and companions of those with intellectual disabilities, but I suppose anyone (ANYONE) can take the same ideas and apply them to parenting themselves.
A parent can not let a two-year old cross the street on their own. But somehow, either we will teach them to do it before they reach a certain age, or they will try on their own. And if they do not try on their own, there is something vitally wrong, no sense of self.
When I started nursing school several (SEVERAL) years ago, we had one student who only lasted a week. She wasn’t stupid. But she was emotionally handicapped so severely that she could not function in a dorming-in situation. She was so dependent on her mother’s advice (do I wear the green dress or the blue?) as to be completely incapacitated. Her self of “I AM” was buried lower than the titanic.
I always tell parents of pre-teens with cognitive disabilities that they must be pro-active in teaching their offspring. Because if you don’t teach them potentially dangerous things like crossing the street, riding the bus, and lighting the stove (which is VERY scary for parents to do…)… then the day will come when their child will try it on their own, without prior instruction, and that is OOOH so much MORE dangerous. I have mentioned this more than once on this blog.
But I want to take it a step further. That initiative of the child to try something should not be viewed as an enemy, an evil monster that we have to preempt. (Even though, for the child’s safety, we do need to aim to teach before they try and tackle lighting the stove and the like on their own.) But the urge to try something new should not be squashed. Not by parents, and not by staff. A person should not be rebuked for showing initiative. Even if he scared the wits out of you. You can explain that an activity is potentially dangerous, and that he needs to learn the correct way to do it, but don’t yell at him for trying, if YOU didn’t take the time to teach him!
In fact, we need to do the opposite: to encourage initiative and learning. [One can teach a child that they are more likely to succeed in new tasks if they gather information first, but it will only work if you cooperate when they want to try something new. And this doesn’t mean that you have to teach them how to do something you suspect is way above their ability. A child who wants to learn to fly an airplane needs to be informed that in order to succeed in this he needs FIRST to learn many other things…..] We actually need to praise them for trying things, asking questions, and saying what they think and want. Often, we as well need to stretch our pre-conceived notions of what is “possible” and what is not.
Along the same line one can appraise the manner in which we do present things that do need taking care of. A young adult does not need to clean up the discs and food wrappers he threw under the computer because I said so. He needs to do it because if he doesn’t, discs will get broken, and cockroaches will come. And since he is a part of a family, he needs to do his share in preventing damage just like anyone else. [Which reminds me of a friend who toilet-trained a capable older child in a day or two by simply explaining that she did not have the finances to buy both Pampers and pretzels, and he should pick which to buy.] The more you can show a child (including the “normal” ones) that what you are asking is really something he needs, the more cooperation you will get.
Of course, the biggest benefit of all this is that you will strengthen the “I AM” of the person you are dealing with. And while it will mean that he will therefore disagree with you at times, you are strengthening their will to succeed, their ambition to learn, and empowering them with tools that help prevent abuse. In my opinion, that’s a very good trade-off.
[Note: If you are reading this as a link from "Try This Tuesday", please forgive me. But attitudes may need to be tried as well...]

That Little Smidgen of Independence-Part One

I was at a workshop yesterday with Ricki, and the topic was puppets. I have used puppets in the past, most recently taking one to the hospital when Ricki had her eye surgery.
Puppets are great, and if you are a parent, and have no puppets, you are missing some big artillery guns in your “tame those wild monsters (kids)” arsenal. Kids will accept almost any statement from a puppet rather than you. Somehow “Pick up this mess; this room looks like a pigsty.” is funny coming from the mouth of Muppet…… while if you say it, you are a domineering bossy pest. It seems, somehow, that kids don’t like to hear our well-meaning helpful suggestions (ie., Mommy’s domineering rules).
And if you think the kids are the only ones who want to show that smidgen of independence from authority, think again. Isn’t it true that if your spouse tells you that the back storage room looks like it got side swapped by hurricane Katrina, it will probably raise your hackles, even though you have been telling yourself the same thing for the last month? (Got to do it someday….) And if, G-d forbid, your mother-in-law would state the same to you over the phone, chances are that as you hang up you will reach for a chocoholic fix. (I know you don’t have chocolate in the house. You’re dieting. I’m talking about the little piece hidden in the corner of the freezer just for emergencies like this….)
It all boils down to the fact that no one likes being told what to do. We would much rather face our short-comings on our own time and space, than have someone else point them out to us. We would like to feel in charge of our own lives and destiny. [Perhaps this is one reason people who do not believe in G-d are more apt to turn to Him in time of crises. When faced with something that interferes with our sense that “I AM in control”, we try to regain control by striking a deal with the Almighty.]

Odds and Ends

just a bit of odds and ends:
1. I am still waiting for the hearing aid to “somehow” revive itself…..
2. We finally were given the final schedule of classes for Ricki’s class till the end of the school year. It is atrocious. I have no idea how in the world I will make a workable schedule of this. The old schedule was much better. I wish somehow that they would have checked with me before finalizing it, but hey, I’m just a mom. They have no idea of how impossible it is, but since it is interconnected with other classes, it is too late now. But don’t worry. Somehow I will make a reasonable schedule out of it. (I have to choose what classes she stays in for, and which out….)

Assassination of Kennedy- Children Learning about Terror

I am taking up Batya’s prodding to blog about where we were when President Kennedy was murdered....I wasn’t sure that I could do a whole blog on this, but it grew as I typed..
I was in 6th grade the day which President Kennedy was killed.(OK, now you know how old I am!) I had viewed him as an impeccable person, not knowing the scandals that later arose around him, and viewing everything with a child’s (you are “right” or “wrong”) mind. It was rainy outside, and when our two teachers came in to tell us "Something upsetting", I thought a tornado was on the way. The shock of the announcement was tremendous. WE watched TV there in class and saw all the announcements. It was one of my first contacts with the reality that there are evil people in the world. (Also, somewhere about that same time, I came across some old magazines covering the Eichmann trial (in the office of our local airport), where I first became aware of the types of things perpetrated during the holocaust, which needless to say, left me in shock.)
The question is, how can we help our children handle this type of occurrence? (And in Israel, we are not talking about 6th graders, but much younger children.) I always suspect that if a kid is noticing the tension of the adults around, and is grasping at least some of the information, he needs to be told. Then he can be told that it is rare, and not likely to happen to his family. And I always add: “We don’t choose when we die. We can only choose how to live.”

Seeing Someone Over the Threshold

You know, as a childbirth educator, I get to meet a lot of young couples. And on the whole they appear confident. Of course they have fears. The birth. Will the baby be OK? The responsibility. But underneath it all is the feeling that things will be OK. Which is probably good for our psyches. To live in constant fear is only good for ulcers and the like. But, as we all know, there are no guarantees. Not in childbirth, and not in life. When we send our children off to school in the morning, we assume that they will return by evening, and hopefully in one piece. And we hope.
Our love for our children starts well before birth, and will continue to the day we die. We wish that we could protect them, shield them, stop all hurt and pain. But as fierce as our love is, it isn’t powerful enough to make us G-d.
And sometimes parents end up watching as their child walks over that threshold into a different existence. And there is little that the rest of us can do to help, as the parents bitterly face the fact that all the love in the world can not protect their offspring.
But that love is there. It doesn’t go lost. It affects the parents, and those around them. And please never ever tell a parent that something was for the “best”, or that this little infant is something they can “forget”. For that love is the biggest piece of their connection to the child that they have left. Yes. Love makes us vulnerable. But without love, what is life worth?

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………