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……