Monday, December 31, 2007


I always felt (and still do) that Ricki’s siblings handle having a special-needs sister rather well. It is true that one of them has been tormenting her lately, but I suspect that it has much more to do with his age (15) than anything else. I’ve had 15 year old boys with younger sisters in the house before, and I know the scenario by heart. I suspect that families where teenagers don’t kick each other under the table (on occasion) only exist in fairy tales.
[As an aside, I love for my children to read, but wonder sometimes how any parent is expected to be able to measure up to the standards portrayed in our children’s books: always loving, calm, original, and baking cookies. It’s a hard act to compete with. I wonder sometimes if little kids think they got short-changed. (Why little? Once they get older, they have probably seen parents a lot worse than theirs….) That should balance the scales a bit….]
Anyway, today I was talking today to the daughter of a friend, who also has a sister with Down syndrome. (That’s how her mom and I met.) She’s about eleven, and is witty, funny, and refreshing to hear. She hates when her sister sings (loudly) the same song 10 times. But she is fiercely proud of her at the same time. It really is a special situation, that if not abused, leads children to grow up more mature, more giving, more appreciative of what a blessing normalcy is.


Now we all believe that we need to give our kids more independence and choice. However, I draw the line at:
-Doing homework with a pen. The answers can’t be erased. Today I had to re-write 4 pages of worksheet that were filled out (without trying to THINK) in pen.
-Cutting your own hair. (Yes, she did today. Her older sister gave a loud yelp on seeing it, but thank G-d it wasn’t too bad.)
-Trying to cook something new with no instructions or recipe. (Try frying noodle bits with no water of oil.)
As you can see, on top of homework procrastination, regular arguments, etc, we have had quite a day. Well tomorrow is a new day!

Saturday, December 29, 2007

A Little Lamb

I was studying Exodus chapter 12 with Ricki today. We were reading about the Korban Pesach (Passover sacrifice), and how the killing of a one-year old lamb was involved.
At First, I was afraid that she would feel terribly sorry for the lamb, but her only reaction was “yuch” any time I mentioned slaughter or smearing blood on the door lintels. But when I mentioned that this baby animal was the baby of a sheep, or a goat, she blurted out: “But his mother will miss him!!”
Yes, Ricki understands that. And she is “retarded”. So what can we say about the idiots who still advice new parents of children with Down syndrome to give them up for adoption?
And my eyes teared as I realized that this teen, who will probably never have a child of her own (or if she does, the child will be taken from her)…she at least can appreciate how a mother must feel.

Friday, December 28, 2007

This evening I went to talk to the mother of a “new baby” with Down syndrome. The baby was real cute, and quite alert. At 6 weeks of age, she was already making excellent eye contact with her mother as well.
As I looked at her, I thought: She’s looking at a different world than the one Ricki was born in. She probably won’t have to fight for an inclusive school placement. She will get several hours of “aide” each week, paid for by the city. Her mom won’t be told “She can’t go to that kindergarden, she needs room to be wild in!”
I am proud to have been a part of that change. It is very gratifying to know that you have had a positive affect on your community, and on individuals. For is that really not the measure of who we are?
But perhaps most important, I think, is to check where we stand in relation to those closest to us. It is around our family that we are perhaps least likely to be charitable. And family members are the people who are most likely to come in “rubbing” contact with all aspects of our personality. Perhaps we should try looking at ourselves through our family’s eyes, a “looking glass” into the measure of our souls.

Thursday, December 27, 2007


I saw some advertisements today, and I really wondered: “Who are they speaking to?”
While youths may be carefree and careless with spending, the people with the money are adults. So why are 70% of the advertisements hinting at least (if not blatantly saying): Use our product and be attractive, young, and sexy! Apparently because that is what sells.
However, take your average 40 year old father. It seems to me that his day-to-day world will be more concerned about many other things than this appearance thing. Get a group of 32 year old women together, and they are more than likely to be talking about housework, kids, and the newest movie that they saw.
In addition, the fact is that the real power people in this world are the politicians (most who are at least 40 I suspect), executives, professionals… many of whom are married and settled down.
The point I want to get to is that somewhere along the line, society has bought into this “be young and sexy” quest, far afield from any journey towards kindness, to develop meaningful relationships with our spouse, to be responsible adults. Precisely because these advertisements work, it says a lot about what our priorities are.
And then in the end, where does this bombardment of nearly nude (photo retouched) women leave your normal not-such-a-model-figured woman? I suspect very displeased with herself. From where are women expected to get the strength to battle this “You are worthless” message?
And for heavens’ sake why in the world do they imply that you have to be ultra thin, and then even put a model on the chocolate ads. I promise you that “the brown temptation” won’t help you get any younger!

Wednesday, December 26, 2007


Well, I’ve got a new computer. And I hope to implement a new policy as well—less time on the computer and more time sleeping. As a reading addict, I find the computer a lovely source of reading material—but at a cost. The time spent leaves me with too little sleep, which makes dieting all but impossible.
So it all comes down to that old question: What are my priorities? What am I spending my time on? I don’t want in five years to look back and see that I have wasted my time (excessively) on things that are not really important. It bears reminding ourselves at times, that our sojourn here is limited.
Anyway, if I want to implement that policy, I will have to be firm with myself. So bye for now; it’s late!

Sunday, December 23, 2007

"Big Baby" !?????

Last night I had a conversation with someone that really floored me. Completely.
I had mentioned that I have been very busy lately.
"With your 'big baby'?" she queried.
It took me a minute to realize that she meant Ricki. I swiftly informed her that not only is Ricki not a baby, but she is a teenager in the full sense of the word. I spoke softly, yet firmly and passionately. (I tend to give over my views passionately....)
What really surprised me the most is that this woman herself has an older teen with Down syndrome. She should know better.
I feel sorry for her daughter.
I had a nice sequel to my last post written up already,but my computer died tonight (or became SERIOUSLY disabled), so I will try and remember it as best as I can. (The benefit of my son having a computer is the existence of back-up access. I just wish that half the English letters on his keyboard weren't rubbed out, and that his space bar worked better.....)

Anyway,I want to take the last post a bit further. How often do we "peg" ourselves? How many times have I denied myself the chance to try something because I was too embarrassed, "too fat"? Have we ever, as parents, felt that we knew our child better than the teachers, but were scared to speak out, not giving ourselves the strength to stand up?
Have you ever wanted to try something, only to talk yourself out of it, doubting your ability? Have you ever felt self-confident enough to do something slightly "different"?
Instead,I suspect that we often tie ourselves into a box, tie it shut, and knot it for good measure. Also, even if we identify ourselves in certain ways (in my case, Orthodox Mom, mother of a special needs child, avid reader), I think that we have to take a good look sometimes to see if there are other aspects of our lives and personalities that we are overlooking.
So give yourself a bigger pat on the back, an occasional shove to try something new. Try to "peg" yourself a bit more imaginatively. Spread your wings a bit....

Friday, December 21, 2007

"Well, He sure had You Pegged "

I want to share a story from last summer. I was visiting my parents, who live near Rocky Mountain National Park. We (Ricki, and I, along with my mother who is an excellent hiker) had spent a large part of the previous two weeks hiking. I enjoy hiking, and my mom had the patience to take things slowly. This allowed me to attempt hikes that probably most people my weight (which at that time was about 150 kilos!) would not try. (Besides, having hiked a lot with my family as a child, I KNEW what I was missing if I didn't make the effort and go.) Among other hikes, we trekked up to Bierstadt Lake, a hike that involves a respectable gain in altitude. I was very gratified that I had put in the effort.
During the same week I noticed in the park's newsletter about a historical site that I felt would be informative for Ricki, and I also wanted her to see the not too-far-from-there continental divide. My mother kindly agreed to drive us there.
Arriving at the site's entrance, we set out on the level and (for us) laughably easy half-mile walk to the site's main structures. Mid-way there, we met a ranger driving a golf cart (used for the disabled to reach the site) back to the entrance. Taking one look at me, (or rather, as my sizable girth) he suggested that we could use the cart if needed.
"Oh no", laughed my mom, "We really don't need it."
"Well," he countered, if it gets too hard for you to return, you can have them call me…"
"I don't really think it will be necessary", I interrupted, adding: "We climbed to Bierstadt this week…."
He beat a hasty retreat, and my mom quipped "Well, he sure had you pegged' didn't he…"
Yes, he did

The sad think is that we all tend to peg each other. Fat people get pegged. Those with intellectual disabilities get pegged. Orthodox Jews get pegged. _________ ( fill in any group) gets pegged.
This classification of people by external signs helps us get along in the world. It helps us know what to expect from others and how to react to them. The problem is that it limits our abilities to truly envision what others can do, and to encounter them as individuals.

Wednesday, December 19, 2007


When Ricki was born, our expectations weren't that high. Only after reading a few good books did I realize that there was a huge untapped potential there. I am sure that none of us thought that Ricki would study 7th grade science.
Well, this year Ricki has learned about transformations of matter into various states (solid, liquid, gas), chemical reactions, atoms, and Chernobyl (albeit on a very basic level). I am pleased to inform my Dad (who is a chemist) that his granddaughter aced her midterm exam in chemistry.
Tomorrow she will start studying nutrition and the digestive system. This is undoubtedly more applicable to her life. Nevertheless, I am pleased that she has an inkling of knowledge in chemistry as well.

Monday, December 17, 2007

An Open Letter to All Doctors and Therapists

Here is my promised post on doctor's appointments.

I would be rich if Doctors/therapists/dentists/ plumbers/ computer technicians would pay ME when they are over 30 minutes late. Innumerable times I have taken expensive taxis to reach an appointment on time, by therapists/doctors who would charge me if I didn't come, only to sit (fuming) for more than an hour before being received.
Sometimes I have postponed a necessary doctor's appointment by several weeks, in order to get the first appointment of the day. (Which I wanted in order that my then-unmedicated daughter with ADHD not be "bouncing off the walls" by the time we get into our appointment an hour late, as this doctors' appointments usually go.) Imagine my frustration when the doctor arrives 50 minutes late and meanwhile Ricki (my daughter) is poking all the babies in the room, and their mothers are growling at me.
So professionals, I ask you:
Why do you think, in your efforts to be "totally booked" ( and not heaven forbid, lose one minute of earning time), that it is permissible for you to steal my LIFE (30 minutes of it)?

Sunday, December 16, 2007

"And you have to carry it with You"

I was talking to a dear friend the other day. We were discussing the common problem of people trying to "fix" your problems with a glib line.
I mentioned that the fact that "It could be worse" is not a helpful thing to tell people, even though it is generally true. This is a line that we can tell ourselves, but not others. When we say "It could be worse" to ourselves, that is exactly the message we are transmitting. When someone ELSE says it, the unspoken message is: therefore you should not feel bad nor complain.
I have written elsewhere that this is like taking a large stone and throwing it on someone's foot. Knowing that the leg does not require amputation as a result does not remove the pain from the injury to the foot. The pain exists, and you are allowed to acknowledge it.
Precisely then my wise friend added in:
"Then you have to go on with life, and carry it with you."
Yes, precisely. Carry it with you. Don't let it tie you down like a ball and chain….Instead, let your spirit soar, and squeeze that pain (even while accepting its existence), to a size that you can fly with. If not today, so tomorrow, or the day after….


I have a new granddaughter.
So since my daughter in law is in the hospital, my son and his first daughter were here on Saturday. Usually when they are occasionally here for the weekend, Mom (daughter in law) takes care of this child. But since they were here without Mom, more of the responsibility fell on me. I was very grateful for this; I had a better-than-usual chance to see my granddaughter up close.
I discovered that this granddaughter is very smart, talkative, and self-confident. At first I almost felt that she was a genius, but I quickly attributed that to having forgotten what normal two year olds are like. (It's been 13 years since Ricki's older brother was two). The ease in which new words are gathered, the inquisitiveness about everything, was a pleasure to behold.
I mentioned to my son that since his daughter is speaking so well, he can already start using two-word phrases. Instead of simply naming objects, he should label them and add an adjective.
"a yellow flower"
"a big ball"

He replied that he can't be bothered; she'll pick these concepts up in playschool. I was floored. To witness such a blasé attitude…a child that doesn't need an overdose of teaching (and teaching… and teaching…) Oh, what a luxury a normal child is!

Friday, December 14, 2007

Things that I Appreciate

-Entertainment advertisements that list the price of tickets to the play/ exhibit
-Doctors and dentists who respect you enough to receive you (more or less) at the time of your set appointment. (More on this some post soon)
-Receptionists who notice that your child with special needs is in "meltdown" and pass you to the front of the line (which occurred, of course, because it is already 90 minutes since you arrived on time for your appointment).
- Caterers who remember that 65% of the population is on a diet, and provide diet drinks as well as regular.
-Store owners who do NOT put candy, breakable toys, or breakable china at toddler height.
- People who when your toddler or special needs teen is having a "meltdown" pass by without a comment. (The worst are those who say "Oh, isn't he SUCH a SWEETIE!", offering a candy as well.) (If I ever commit murder, you'll know why…..)
-Manufacturers who make containers that actually open the way they are supposed to. (It tears along the dotted line; the ring doesn't break on touch, etc.)
-Automated phone information services that have an option to speak to a real live person, so you can ask that one question that they forgot to program in (usually the price).
- Any minor electrical appliance that lasts over a year.
-Clothing manufactures who realize that not every teen is a model, and thus use some elastic in their skirt waistbands.
-Toys that don't need ten minutes to unwrap, and which wait at least two weeks after being given to the grandchildren before it self-destructs.
- Buttons that don't fall off clothing within one month of purchase.
-Waiting-for-service phone music which is not half-advertisement. And the best is the one that tells you which number in line you are (every minute or so), in order that you can gauge if the wait is worth it or not.

Thursday, December 13, 2007

Things that I Like

-A smile from a grandchild
-A bird that flies in my windows and eats crumbs from the floor
-A hot cup of coffee on a rainy winter morning
-The pristine white of a fresh snowfall
-Listening to Jazzy music as I wash the floors
-The aroma of baking bread on a Friday afternoon
-A hiking path in autumn's foliage
-A good novel to curl up with
-Sitting near the window in the early morning, and watching the world come alive
-Seeing my married sons carrying their offspring with a confidence I never knew they had
-The fresh smell of the rainfall
-Hiking in the mountains
-A chat with a friend

Tuesday, December 11, 2007


I was at a conference today. As I surveyed the coffee table, I said, disgruntled, "What, no artificial sweetener?" A young adult with Down syndrome next to me said "Oh, yes there is!" and pointed to the container. She did not look particularly high functioning, but she had an air of confidence and self-assurance. Later that day, I heard the head of staff of her group home speak. He spoke about empowering the young adults that he works for. He spoke about teaching them to be self-advocates, having a say in what they want and how they live.
His talk was a breath of fresh air I have been waiting to witness, a sign that my daughter may have hopes not to be buried in a "sweatshop" (opps, workshop…) at age 21. It seems from comments that I overheard today, that several parents are beginning to wake up. Parents are coming to the realization that things need not stay the way it has been up until today.

Monday, December 10, 2007

Sign on the Door

Our neighbors recently returned home from a vacation, and their family put up a "welcome home" sign. Ricki asked me what it was (which pleased me, as she showed inquisitiveness to be asking). So I explained, and thought no more about it.
A day later, coming home from a late-night meeting, I found a sign on the door. It was a bit hard to decipher, but the message was clear: I had been missed, and Ricki cared enough to say so.

Saturday, December 8, 2007

Running After a Cure

I am supposed to give a review soon to an audience about "advances in Down syndrome", and I am scared to tell about one study. It shows an improvement in MICE that MAY someday lead to a medication to aid in Down syndrome. What am I afraid off? Parents who will run off and use the drug before it is tested.
Sometimes I am amazed by the way people can run after the elusive "Miracle Cure" for their "special needs" children, or for their diet. People will spend huge sums of money for untried and certainly unproven "cures".
First, there is the issue that if something hasn't been tested yet, how can you be certain that there are no side effects for your child, perhaps even very serious ones. I remember falling for a diet "cure" years ago, an "all-natural" one. Since I was breastfeeding, I hesitantly inquired about the existence of medications/caffeine in the product, and was assured that there were none. Within a few days I realized that one quickly acquired a "tolerance" for the product, needing to up the dosage. I got scared and dropped the idea. Years later I learned that the product was pure caffeine (and a very expensive caffeine, at well!!). Years ago people tried using growth hormone on children with Down syndrome. The result was a higher incidence in cancer in these children.
Secondly, I personally think that if I, junior local scientist, discovered the cure-all for Down syndrome, autism, or overweight, I would RUN to the drug companies, set up double-blind testing, and rake in the resulting fortune. The fact that a product is an "exclusively patented, specially processed" secret is significant evidence that it would never hold up under close scrutiny. The same goes for "treatments". About a year ago I heard of two parents from our community who fell for a quack "Doctor", who supposedly cured "floppy muscles", but one had to commit themselves to a ten-session treatment program at sky-high prices. Again, if his treatment worked, he could prove it, and then rake in the money much more easily, simply by training others.
When confronted with my arguments, parents say:"Why not give it a try?" My first answer is the "side effects" problem (see above). The second point is that one could use that money to do things which will make the quality of your life that much better:
Try taking a cab back from that late afternoon therapy, or hire a teen "mother's helper" for a few hours a week. Or send the siblings to a nice camp in the summer. But please think twice, evaluate things carefully, before falling for a new "amazing" way to empty your pocketbook.

Friday, December 7, 2007

The Family Gathering

Tonight we had a family gathering at our house. It was nice, and everyone who we hoped would arrive actually managed to do so, in spite of the rain. One son said upon entering: "Oh Mom! I see you made cornbread. Gee, its been a while since I had your cornbread…" He made my evening.
But the real point here is that home-cooked food (and the scents they produce) are a big portion of the things we remember from our childhood. I remember that once I happened to come across some "spick and span" floor cleaning powder. This was the same brand which my mother used when I was a child. As I poured it into a bucket of water, the pine smell which arose immediately triggered memories of "home" from thirty years before. That is the power of smell.
And when we consider food, it is obvious that the memories created are even stronger, due to the taste, and also because of the emotional bonds created though food. Thus it behooves us to take the time, at least occasionally, to made special holiday food with our children (when applicable), to help reinforce that sense of "home", and connection with family.

Thursday, December 6, 2007

A GPS for Life?

A well-known teacher and speaker concerning people with intellectual disabilities and sexuality, Dave Hinsburger, has a very interesting blog, "Chewing the Fat". (This statement is not a wholesale endorsement of his world view.) Yesterday he wrote about how handy his new GPS system is, and wouldn't it be nice to have a "GPS" for life. If only G-d would tell us what to do, wouldn't it be easy?
My religious belief is that we DO have this GPS. G-d has clearly told us what he expects, in the Torah (Bible). He instructs us to be honest, to be kind, to help the downtrodden. He has told us to share a bit of our money and goodness with others. We are expected to try and rise a bit above the petty and mundane, and become better people.
The question is, are we willing to listen to our "GPS"? We may be loathe to leave the freeway we are on, with its well-paved asphalt.. Thus, when G-d tells us to turn off onto a bumpier side road, we often don't listen, and even if we do, we are likely to complain. However, we ought to be aware that even freeways can lead you to the wrong destination.
I am very tempted to add here that having a special-needs child is a bit like taking that side road that G-d led us down. Then those of us with special-needs children could all bask in the glory of listening to the "GPS". But I want us ALL to take it further:
-the diet when the overeating freeway is packed (literally!)
-to make peace with someone you have argued with
-to try and see something from an opponent's point of view… at least to understand him!
-to try for patience when your children do something so obnoxious that you could cry

These are just examples. Think if you can: If G-d gave me a GPS where would it lead me to?

Wednesday, December 5, 2007

small odds and ends

When I returned from vacation this last summer, I immediately noticed that my computer was working at a crawl. I accused the teens of downloading something with a virus while I was absent, but of course the charges were hotly denied. Well, yesterday I discovered that they had installed some type of car-racing game that uses tons of mega-bite memory, and I promptly uninstalled it. PRESTO! Computer stopped limping along, and is running. GRIN

Finale of the FM story:
Immediately after the weekend I called our hearing aid supplier to request that he order a new "boot" for the FM, and ask (gulp!) how much it would cost. It "only" costs about $50 (much less than the entire FM, which is priced in the range of about $2000). The nice surprise was that the supplier sent two FM sets to the store by mistake, and the extra had not been returned. So we were able to replace the "boot" immediately.

Tuesday, December 4, 2007

Cruel Mom

If I get ONE more "What do you expect from that poor retarded kid" look today, I think I'll get nauseous. Ricki had extensive dental work done this morning, and woke up from the general anesthetic rather quickly. Once she awoke, she had to stay there until she had drunk a glass or two of water, and gone to the bathroom. Now Ricki without her Concerta tends to be a rather ornery person, and this morning was no exception. That's OK; I was expecting it. But expecting bad behavior and understanding it has nothing to do with allowing and condoning it. So when Ricki threw glasses of water on the floor, I made her pick up the glass, and the second time I also tried to have her help a bit to clean up. People were looking at me with that "How can you be so cruel" look, and of course one worker gave her FIVE prizes so that she should drink. (Thus she effectively rewarded Ricki for misbehaving.) I even tried to give her the concerta as we left, but the cafeteria in the hospital had no yogurts (which is what she usually uses to swallow her pills), only cakes and soft drinks. The only positive things were that no one called her Sweetie" as she was acting up (I would have had a fit…), and that she fell asleep on the bus home. Arriving at the home front, I stuffed her concerta down her, even though it was almost noon. So she'll be up to 11pm. Anyway there is a party in school tomorrow.


My son traveled yesterday evening abroad. It was awkward saying "goodbye", as how can you pack a whole year's worth of love and concern in a phrase or two?
We are lucky to live n a time when someone traveling usually does not mean "goodbye" forever. Once, not so long ago, if a child traveled abroad to study, to marry, one expected to never see them again. Today not only will we see them again (in all probability), but we are even able to communicate instantaneously with them by phone and/or email.
I myself am a bit bad about connections. My married sons say that I don't call enough, and their in-laws have probably given up on me. So maybe I need (and perhaps some of you as well) a reminder of how important family bonds are.
Family, ideally, should not only be those who care about you, but also those who care enough to lovingly call "foul" if you are really off-track. They are the ones who will laugh when you remind them about the time you left the sugar out of the cake, and who remember what type of wine you like to drink on Purim. They even know how old you REALLY are (but wouldn't tell).

Monday, December 3, 2007

Anything but Typical

You know, my Dad is a great guy. A tall, strapping WW2 vet waiting for discharge from the army, he met my mom when someone played a practical joke. Someone was supposed to set my mom up with a date- someone short, as her height is petite. And this person set her up with the tallest soldier he could find… my Dad. But he looked beyond my Mom's diminutive stature and saw her tall sense of spirit and goodness.
My parents raised us with a deep sense of justice. When our school put on the play "The Merchant of Venice", my parents (who are NOT Jewish), sat me down and explained, in advance, the anti-Semitism in the play. I am sure none of my classmates received that lesson.
When we visited Florida, our parents had us sit in the "colored" soda fountain as a protest to segregation. [I felt sorry for the poor waitress who seemed flustered by what she thought (at least at first) was a mistake.] The message was clear: stand up for what you believe!
We had a neighbor who was a mentally-impaired young man, living with his family. As a girl (I think about 10 years old?), I spent a period where I played in his back yard daily with him. My mom warned me (I think at the urging of the young man's mom) that even though he was disabled, he had feelings and drives like all other young men, and I should be aware and take care. But she did it in a way that did not scare me, nor did she in any way pressure me to stop playing there.
And all of this was in the early 60's. It was definitely not your typical Midwestern town upbringing. Not surprising, as my parents are anything but typical.
Happy birthday Dad!

Saturday, December 1, 2007

the teen and the FM

Well, barely 2 days after getting a FM addition to Ricki's hearing aid, Ricki has managed to break it. The aid was a bit dislodged, and was squeaking in her ear. As she took it out, she tugged on the "boot" of the FM and broke it. At least this part is not the super-duper expensive piece, but I am sure is also not cheap.
When we purchased the FM, the speech therapist said that Ricki shouldn't handle it, and I was quiet, even though I knew that she WOULD. I mean, can you really expect a child with a squeak in her ear to go "tell Mommy"? A teenager?
Actually it was my fault that it broke. I should have TAUGHT her how to take off the aid without tugging on the boot. But then, I didn't realize how fragile that "boot" part was. You would think that for over $1500 they could have used a more durable plastic. I mean, it IS used by kids……

Thursday, November 29, 2007

The Power of Music

Remember the Movie "The Sound of Music?" Frankly, I think that a better name would be The Power of Music". Music is a very powerful medium.
A few years ago I was going through a difficult period, and I took the time to make a power-point presentation set to a stirring tune about Hanukkah. Today I heard the song again. I actually had tears in my eyes as the tune raised up the same emotions I had been feeling previously. All dictators control the radio in their country. I am sure that news control is only part of it. Music is a strong tool for them to use.
This is why, even though I enjoy nearly all genres of music, I draw the line when my son plays "rap". (First of all, I have told him that as far as I am concerned it is not music at all….) But the whole tempo and background is a complete antithesis to me, no matter what the words say. Then this week he started listening to opera of all things! Go try and figure out a teenager!

Wednesday, November 28, 2007

Dealing with Uncertainty

Ricki's aide is quitting- the city hall has been late in paying her. I understand that, although it leaves me a bit in the lurch. I am scrambling to find a temporary replacement for next week. The last thing I would want would be for Ricki to miss the Hanukkah party, along with the play she will be in.
The old aid was very good with behavior, so I was thinking of adding private to keep her on. Especially since I am afraid that the city hall will send me an aide who is not so good. However, she only does about 10% of the adaptation of materials for Ricki (I would pay her to do more, but she doesn't want….), and I can't see paying $250 more monthly as long as I am doing the adaptations. I need that $250 to pay for afternoon activities.
So how does all of this apply to each of us? Because I am operating out of my "comfort" range, living with a bit of uncertainty. It would be "easy" to offer the aide more, and drop the "life skills" in the afternoon. Then at least I would know that her school situation is "workable". However, that would throw more of a burden on me. So I will have to live with uncertainty, for the good of the long run. Sometimes a bit of discomfort and tension is a small payoff for long-term benefit.
I might add that the same goes for diets. One has to live with the limitation of the diet for that long-term benefit.

Tuesday, November 27, 2007


Here's an additional entry for Webster's:
tem·po·rary in·san·ity \ tem-pə-rer-ē in-śan-ə- \ n a state in which an otherwise normal (??) parent enters into a shouting match with their 13 year old daughter at 7:15 AM. This same parent can quote quite proficiently how to work on behavior problems, and knows very well that yelling will not work.

Luckily, as I was going full blast, my 15 year old said "Mom, I'm sure they can hear you downstairs…" I stopped, and with 20 seconds of reflection, decided on a new course of action: walk away and ignore the behavior. Within 3 minutes the problem was resolved, and for the remaining time until school, Ricki was fine. So why in the world did I yell to start with? Temporary insanity……… Have a nice day!
Today (Monday) was an easy day. Ricki was quite cooperative, did her homework, and practiced her piano. I don't take any credit—it was a pure windfall. But I DO take credit for making sure that the natural good consequences would be pointed out to her, and to add that good word of praise.
Which leaves me wondering… Why am I not more forthcoming with praise? Why am I acutely aware of the good only when it benefits me?
It would seem that if I would pause more often, realizing that praise is food for the soul, and probably one of the best educational tools I have, I would use it more. It’s a matter of taking the long view.

Sunday, November 25, 2007

Flashbacks and short circuits

Yesterday there was a mild earthquake here. I didn't feel it, being sound asleep at that early morning hour. But both my husband and one of my sons and did feel it. When they mentioned it this morning, my mind played a trick on me: it flashed me back to a piece of music from long ago; with the lyrics "I feel the earth move under my feet". (Carole King) Now that song has NOTHING to do with earthquakes, but my mind clicks over to there on hearing the words "earth shake". But I knew that the song was irrelevant to the topic being discussed, and I didn't mention it.
But for my daughter Ricki, time and time again her brain clicks open to a certain file, based on a phrase, a word….and out spills the song or information that is there. This information may be totally wrong, and often is even inappropriate. She will be singing away a song, unaware that it is not applicable to the situation, or even that no one wanted to hear this song. She seems content that she "knows" the answer, even if it isn't, really. I usually know what is going on: after all, I help her study and archive a lot of information. However, others (especially strangers), do not. In these cases I feel that it is not enough to point out the mistake. Later, in private, the point needs to be made about THINKING about "Is this appropriate?" as well. I think that this point will need to be made many many times before it sinks in; so I need to start now.

Friday, November 23, 2007


Frustration is watching your daughter use all of her ample mental abilities to try and get out of doing homework. If Ricki would work half as hard at doing her homework as she does to get out of doing it, she would finish much much faster. Slowly and surely I have learned several techniques to "derail" her avoidance games, and she is slowly learning that both good and bad behavior have their consequences.
Even more frustrating is my own behavior. How many times will I under-sleep, overeat, waste too much time on the computer, or yell at my kids, before I learn that this type of behavior does not pay in the long run. It is very comfortable and easy not to have someone bossing me around The problem is that besides being convenient, it could be fatal.
I suspect that many women need to be better "mothers" to themselves. We need to take the time to love and encourage the hard-working person within. We need the honesty to draw lines at self-defeating behavior.

Wednesday, November 21, 2007

Teen Math

I have a new phrase to add to Webster's dictionary:

teen math /tēn math/ n A branch of mathematics pertaining to household chores, where the whole is inexplicably less than the sum total of its components.
Example: When a mother washes all the dishes before leaving home, and on her return discovers the sink half-full of dishes. Yet, unexplainably, all various and sundry teens claim that they washed all of their own dishes. Thus the sum total , which should be all of the dishes, is inexplicably more than the whole (amount of dishes washed).

But they (the teens) made supper, and one drove me to the doctor's appointment with Ricki, so the pluses far outweighed the minuses. As a result, in spite of "teen math", the teens got a passing grade…….

We Plan and They Plan

I remember, that when Ricki was born, I investigated what the chances were of her ever getting married. I talked it over with friends, many of whom had a rather negative attitude. However, I always used to say "Well, I'm not ruling the possibility out…."
Today I am amazed at how presumptuous I was (and sometimes still am). I laugh at the idea that my sassy "little" 13 year old will actually listen to me at age 21 or 22 about this matter. I feel that my job is NOT to decide this for her, but to see that she gains the skills needed for whatever she chooses later in life.
However, this does not mean that I can't broach the subject. In fact I did just that a few days back. Ricki had made several comments about having kids, and I felt that some reality "enrichment" was called for. I would hate for her to suffer the trauma of having a child taken from her by social services, as the culmination to her dreams of having a child.
So I sat her down and explained that she will probably marry someone with a disability (if she can even find anyone suitable, and if she is able to live fairly independently). I also informed her that most men with Down syndrome do not become fathers.
At that point I stopped. How much can she take at one sitting?
-You will have to work hard to gain the skills needed for marriage.
-You may have a hard time finding someone suitable.
-You may not have kids.

How can I tell her that even if she does have a child, social services will take the child? Well, I guess I can wait a few years for that one.

Monday, November 19, 2007


One of the problems that can occur when parenting a child with special needs is the daily necessity to ascertain what happened (or didn't happen) in the" educational setting". Luckily, my daughter's aide is very responsible about this, writing a tally of the day's events, homework assignments, and the like. To expedite this process, I provide a daily sheet with the class schedule. This works fine until the non-waterproof ink meets up with the rain.
Today Ricki returned from school, hand clutching a torn and crumpled paper that had obviously lost its war against the rain. The only redeeming feature was that the aide had used non-running ink (unlike my printer). On the negative side (besides the holes, ruined inkjet product, and fragile paper) was the fact that not only was I trying to recompose a document in a foreign language, but the aide has a tendency to write almost in shorthand. After letting the paper dry, I managed to piece it together and slowly decipher the messages.
Maybe I should volunteer my services to the national museum….?

Sunday, November 18, 2007

The Sunday Morning Rush

This morning as I emerged from the depths of a too-short-sleep, I was gratified to see that Ricki was already awake. She even started getting dressed with no prompting from me, and I was gratified that the morning had started out so well. However, as the clock neared 7:30, we were barely on schedule. Then, determined to have her way in EVERYTHING (like most teens), she managed to put us on the late end of our schedule. Finally, after an argument over the propriety of taking a play phone to school (an argument I won, I confess, by tossing it back into the house and locking the door), we set off for school. I decided that we would take the bus. The bus only takes us half-way there, but the few minutes it can save can be crucial in getting to school on time or not.
Just as the bus arrived, Ricki's best friend tapped me on the shoulder. "Ricki's mom, do you want me to take Ricki to school today; I'm also going by bus."
This was a surprise. This friend does not even live near us, but she had slept over at her grandmother's house last night, who does live nearby. I agreed with no qualms. Ricki won't give her friends the same flack she gives me, and even if she would, I know that this friend is a natural for making clear to Ricki what is acceptable, and what isn't. But what pleased me the most is not the time and energy saved, but the fact that Ricki has such a good friend. This makes the tremendous efforts involved in her inclusion so much more worth it.
(But I still need to consider if we should get up a bit earlier each morning, to give me a bit more leave way in the morning rush…..)

A "Good Week"

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

Friday, November 16, 2007

Expensive Vegetable Soup

I decided a few months ago, that since Ricki's behavior had substantially improved, I could stop her "play therapy". Some of the money saved, I planned to apply go to have someone teach her "life skills" two afternoons a week. I felt that this is extra important, considering that she is integrated in a regular class, and is not getting very much formal teaching in this area. This week we inaugurated the twice-a-week life-skills studies, with a private tutor. Each session of 90 minutes is costing me $12.
Well, Ricki was in a very contrary mood today (a replica of that "past" behavior that I had thought was behind us). She managed to dawdle, not cooperate, and be generally obnoxious, and succeeded in taking 2 and-a-quarter hours to make a pot of vegetable soup. (Initially I was surprised at her behavior, as she loves to cook. Later I realized that she is just re-testing the waters, trying to earn slack, perhaps due to two hard tests at school in close proximity.) The 2 and –a-quarter hours might be reasonable for someone studying cooking, and tackling a sizable mound of vegetables to peel. However, that session will cost me $18. Rather expensive soup, I must say! But definitely worth it.
PS. And it tasted great, too!

Wednesday, November 14, 2007

Nightime Magic

Today was one of those days that I felt like wringing Ricki's neck. She has a test tomorrow (Geography), and she simply did avoidance-tricks all afternoon to avoid reviewing the material. Now its not that I think that knowing the name of the type of climate in each area of Europe is that important (as a long-term goal) for her. Nor to know the meaning of "Berlin Wall". But since she basically DOES know the information, and a brief touch-up of the material would greatly enhance her getting a passing grade, it was quite frustrating that she refused to study. (She didn't refuse by words, only by action....)

Now add to that the method she choose to avoid studying: eating. (and eating and eating.) It quickly degenerated to a battle of wills between the two of us, and at half-time, she was ahead. Eventually, I was able to induce her to study by point-blank refusing to turn the computer on for her, until she would finish her tasks. So she grudgingly obliged, but it was a bittersweet moment for me.

So what's the "nighttime magic"? I suspect every parent has experienced it. After a really tough day with your child, step into his room when he is sleeping. Suddenly, all the stubbornness, contrariness, and anger has been erased from their features, the false facade has crumbled away, and you see the pure child he can be at times. It's a reminder of all that potential within, if you can only reign in your own temperament and ego, and approach the child with sensitivity and calm firmness. Magic!

Now if someone can develop some magic to obtain "sensitivity and calm firmness", let me know!


Today a good friend stopped over to visit. (She's a REAL good friend, and even brought a book with her. That's a REAL good friend as I view it.) (I just hope that she realizes that she does not have to "buy" my friendship. I love her for who she is: a giving personality, and a "survivor" of a less-than-easy life.)
Anyway, I showed her some photographs of a recent trip to Colorado, to the Rocky Mountains. She "oohed and awed", as I fully had expected her to. We discussed how amazing the scenery of G-d's world is, how inspiring it is, and how it brought me to belief in G-d.
However, what amazes me more, is that these better-than-a-postcard views do not effect too many other people as it has me. My parents and brothers enjoy the mountains, are enthralled by the views, but it does not lead them to a belief in a Creator.
This in turn reminds me how, after the birth of my oldest son, I was querying the doctor about HOW can he be witness to the intricacy of the birth process, and of the newborn, and not believe that our existence is more than a puzzling genetic accident.
I am grateful for having had the opportunity to experience the enthralling views of the mountains. I am even more pleased with where these experiences had led me to. I pray that I can aptly share this journey with my children.

Yesterday on the bus... living fat.

Yesterday I was on the bus, and as I boarded, I automatically checked first to see if the one slightly-wider-than-most-seat was available. It wasn't, being occupied, ironically, by a waif-like wisp of a teenager. Of course. The single seats were taken as well. I like them, because even though they are a bit of a tight fit, I can relax when seated there, knowing that I am not infringing on anyone else's space. So I choose to stand, not feeling comfortable to squeeze in next to someone else. Luckily, a single seat soon was vacated, and I scooted over to sit down.

A few moments later, a woman who looks even larger than me entered, and sat down in a double seat. I even did a reality check: "Is she REALLY that much more overweight than me? Maybe I am underestimating my size?" (After all, I nearly ever look into a full-length mirror....) However, I decided that even so, she was definitely more overweight than myself. Then I wondered: Does she also feel frustrated by her weight? Is she afraid of infringing on others? Does she feel guilty for filling two seats? Is she feeling exasperated that others label her solely on the basis of her physical dimensions? (Which I was doing up to that point, I must confess.)

Amazingly, a thiny-minny teen soon filled the half-spot next to her. Was the overweight lady pleased to have someone next to her? And why do I care so much about whatever is going on in her mind?