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?