I once read that when administrators and school psychologists were asked the question, "Whose fault is it if the student is not succeeding?", and given the choices:
parent
student
school
a huge percent (98%?) said "parents and/or student.”
ie., It couldn't be because of the teacher/school!
My daughter Ricki is one of the first students with Down syndrome to be really integrated into a grade school setting in our town, and indeed in Israel. Before that time some kids were “dumped” into regular grade schools (ie, included without adapting the materials, and without enough support), but few where truly included. She was integrated into a certain school from first grade (she was 2 years older). The school refused to accept our offer of free consultation. saying,"we can do it ourselves". They did a very poor job, and every single year at the IEP they had a "Bash the Mommy" session.
One year when they said "this isn't working!" I suggested that NOW maybe they would consider using our (free for them) consultants. They refused, saying that we were cruel parents, unrealistic, and didn't accept the reality of our daughter's retardation.
Finally, after three years of this fiasco, I managed to get her transferred to a different school. They jumped her up to sixth grade (instead of fourth), to her age group. And she did much better that year, despite the higher level of the studies. Things weren't perfect, however.
So, when the IEP came around I braced myself for some "Mommy bashing." After all, it took less than three years to train Pavlov’s dogs, and I dreaded the upcoming session. I felt physically ill in anticipation.
Not once in that IEP meeting did I hear the words “improper placement”, “not fitting”, etc. They admitted some problems, and held at a separate time a staff meeting. I heard that at this meeting the “problems” were laid out. And then the principal said: “OK. What can we do different to change this?” Now THAT is an Educator!
Sunday, September 7, 2008
Continuing the “Bathroom Saga”-But its not all about plumbing!
Thursday afternoon I went with my daughter (D.E.), her fiancée (Yaacov), and his father to buy ceramic tiles for the bath. It had become obvious that the pipes in the bath are completely shot. Even the tub had minute holes, leading to seepage underneath.
Now Yaacov’s father has an Arab acquaintance who deals in ceramics, so we left at 3:00 pm to go buy tiles. For some reason we were delayed in our arrival. The workers at the tiles store were about to break their daily fast (of the month of Ramadan), and we had to wait. Dusk slowly fell. On one building after another, festive lights strung up in the shape of the Moslem crescent were lit. The half-mooned shapes adorning several rooftops were silhouetted against the orange-red, and later, purple sky.
Now all of my sons, and Yaacov are amused with me, because I am a real “scaredy cat” when it comes to going to Arab areas in Israel, and certainly it was not my cup of tea to be sitting there for two hours as darkness fell. (And this, especially after my daughter’s fiancée had told me only an hour earlier the story of how he was nearly killed in an Arab “lynch” five years ago.) Even my adult sons know that if they go to pray at a holy site (with a group) in one of the Arab sections of the country, it pays to tell Mom only after the fact. They distinguish between Arab areas and the Palestinian ones, the former being relatively safe, and the later not.
Our host, in typical Arab hospitality, brought drinks and fresh fruit. (I didn’t partake, not knowing if everything was 100% kosher-even fresh fruit is a problem some years.) This middle-aged man sat joking with Yaacov’s father. Later his younger sister, who looked very friendly, came over to talk with us. However, it quickly became apparent that she knows no Hebrew at all. So Yaacov and his father did all the conversing. I smiled. And Ricki laughed. Every joke elicited laughs from Yaacov, his father, and Ricki. Of course, Ricki does not know Arabic. But she reads social prompts, and laughs on cue.
I reflected on how much the conflict of our peoples hurts us. Wouldn’t it be nice if there could be peace? If I could go unafraid to an Arab village, if there could be true give-and –take without needing to be on guard. This young woman really looked friendly, and probably is .But lack of trust is poisonous.
Finally we went to buy the ceramics. When haggling over the price of the transportation, D.E. forgot where she was, and said, “Oh, we’ll just hire some Arabs to do it cheaper.” The man gave her a look, and I was afraid that our good deal on drains was going to go down the drain. I quickly piped up, “But the untrained workers that you are thinking of are not as reliable as this man’s workers.” I made a counter-offer, and the deal was sealed.
I told Yaacov that he has to be here when they deliver the stuff. I don’t have the experience to know if everything ordered has been delivered or not. And- I still don’t trust Arabs. Even if they serve me tea and grapes.
Now Yaacov’s father has an Arab acquaintance who deals in ceramics, so we left at 3:00 pm to go buy tiles. For some reason we were delayed in our arrival. The workers at the tiles store were about to break their daily fast (of the month of Ramadan), and we had to wait. Dusk slowly fell. On one building after another, festive lights strung up in the shape of the Moslem crescent were lit. The half-mooned shapes adorning several rooftops were silhouetted against the orange-red, and later, purple sky.
Now all of my sons, and Yaacov are amused with me, because I am a real “scaredy cat” when it comes to going to Arab areas in Israel, and certainly it was not my cup of tea to be sitting there for two hours as darkness fell. (And this, especially after my daughter’s fiancée had told me only an hour earlier the story of how he was nearly killed in an Arab “lynch” five years ago.) Even my adult sons know that if they go to pray at a holy site (with a group) in one of the Arab sections of the country, it pays to tell Mom only after the fact. They distinguish between Arab areas and the Palestinian ones, the former being relatively safe, and the later not.
Our host, in typical Arab hospitality, brought drinks and fresh fruit. (I didn’t partake, not knowing if everything was 100% kosher-even fresh fruit is a problem some years.) This middle-aged man sat joking with Yaacov’s father. Later his younger sister, who looked very friendly, came over to talk with us. However, it quickly became apparent that she knows no Hebrew at all. So Yaacov and his father did all the conversing. I smiled. And Ricki laughed. Every joke elicited laughs from Yaacov, his father, and Ricki. Of course, Ricki does not know Arabic. But she reads social prompts, and laughs on cue.
I reflected on how much the conflict of our peoples hurts us. Wouldn’t it be nice if there could be peace? If I could go unafraid to an Arab village, if there could be true give-and –take without needing to be on guard. This young woman really looked friendly, and probably is .But lack of trust is poisonous.
Finally we went to buy the ceramics. When haggling over the price of the transportation, D.E. forgot where she was, and said, “Oh, we’ll just hire some Arabs to do it cheaper.” The man gave her a look, and I was afraid that our good deal on drains was going to go down the drain. I quickly piped up, “But the untrained workers that you are thinking of are not as reliable as this man’s workers.” I made a counter-offer, and the deal was sealed.
I told Yaacov that he has to be here when they deliver the stuff. I don’t have the experience to know if everything ordered has been delivered or not. And- I still don’t trust Arabs. Even if they serve me tea and grapes.
Friday, September 5, 2008
The Start of the “Bathroom Saga”
I suspect that this situation, which I am dubbing “The Bathroom Saga”, will lead to more than one post. I already have more to add in a day or two.
It started with a knock on my door Tuesday evening. My downstairs neighbor hemmed and hawed, and finally pronounced: “We have water dripping from our ceiling..”
So I went and had a look, and the stark facts hit me full force. We have a plumbing problem. So I counted floor tiles from his front door to the spot under the drip, returned upstairs, and calculated where the problem was (again by counting floor tiles). I was instantly struck by the certainty that this is going to be expensive. The leak is directly under our bathtub.
Now let me fill you in a bit about our apartment. The building is not terribly old (34 years?), but is old enough that the old metal pipes just aren’t working anymore. They are disintegrating. The tub is also 34 years old, and the porcelain coating is wearing off in several places.
A lot of places in our house need fixing. Every time I see a sweepstakes with a first prize of “refurbish your house” I rush to enter. I would love to have a new kitchen, a normal dining room table (don’t ask)…you understand, I’m sure. A household of kids can be a bit hard on the furnishings**. [Although -in defense of youth- let me add that twice I’ve had teenage sons do marvelous paint jobs on parts of the house.]
Our bathroom is particularly bad. Places in the wall where past plumbing jobs were done were not refitted with tile (so you see the black concrete beneath). The door to the room has a huge dent in it, where a frustrated teenage son had given a good kick, trying to impress on a sibling that he needed the bath NOW. (I add here to reassure you: He and the sibling both grew up to be non-violent law-abiding citizens.) The shower doesn’t work at all.
So faced with the prospects of major repairs, I called my daughter’s fiancée, who works in related fields. Maybe he is familiar with someone competent that I can trust not to overcharge? His reply: “I’ll do it.”
Now, as much as I enjoy bargains, I need someone competent. But it turns out that he has also done plenty of work in this area as well, and has relatives connected to the business (so he can get parts at cost price). The only catch is he is busy as can be, but he will make the time.
So, on Wednesday he came over to see the leak downstairs, make measurements, and discuss possibilities. When he saw the dilapidated state of our neighbor’s kitchen, he offered to tell him for free how to fix it up. I must admit that my daughter picked a groom with a heart of gold.
And even though a “new bath” was behind a “new kitchen” on my “wish list”, it looks like we will get a refurbished bathroom. Because, if we have to tear out the tub to work underneath it, it doesn’t pay, long tern, to leave things as they are now. It’s almost as if we are being told: “NOW is the time!” [Especially as we will be getting it done at cost price, litterally. Also we are leaving intact anything that is still passable and likely to hold up for the near future. I am not chucking out anything JUST to get "new" if not necessary.]
** There is a Jewish tradition/saying that if a woman has seven sons in a row she is promised heaven: because hell she had already. LOL. I guess I’ll have to do something else to deserve heaven, since my six boys are broken in the middle by Ricki’s older sister. A household of teenage boys is a wild ride, I must admit. But I don’t regret it for a moment.
And a final Note: This downstairs neighbor is the one with the chicken(s). (See post on Elul from September 1st.) When I went to look at the leak on Tuesday night, I noticed that they have only one left. Amazing that one hen can cackle so much!
It started with a knock on my door Tuesday evening. My downstairs neighbor hemmed and hawed, and finally pronounced: “We have water dripping from our ceiling..”
So I went and had a look, and the stark facts hit me full force. We have a plumbing problem. So I counted floor tiles from his front door to the spot under the drip, returned upstairs, and calculated where the problem was (again by counting floor tiles). I was instantly struck by the certainty that this is going to be expensive. The leak is directly under our bathtub.
Now let me fill you in a bit about our apartment. The building is not terribly old (34 years?), but is old enough that the old metal pipes just aren’t working anymore. They are disintegrating. The tub is also 34 years old, and the porcelain coating is wearing off in several places.
A lot of places in our house need fixing. Every time I see a sweepstakes with a first prize of “refurbish your house” I rush to enter. I would love to have a new kitchen, a normal dining room table (don’t ask)…you understand, I’m sure. A household of kids can be a bit hard on the furnishings**. [Although -in defense of youth- let me add that twice I’ve had teenage sons do marvelous paint jobs on parts of the house.]
Our bathroom is particularly bad. Places in the wall where past plumbing jobs were done were not refitted with tile (so you see the black concrete beneath). The door to the room has a huge dent in it, where a frustrated teenage son had given a good kick, trying to impress on a sibling that he needed the bath NOW. (I add here to reassure you: He and the sibling both grew up to be non-violent law-abiding citizens.) The shower doesn’t work at all.
So faced with the prospects of major repairs, I called my daughter’s fiancée, who works in related fields. Maybe he is familiar with someone competent that I can trust not to overcharge? His reply: “I’ll do it.”
Now, as much as I enjoy bargains, I need someone competent. But it turns out that he has also done plenty of work in this area as well, and has relatives connected to the business (so he can get parts at cost price). The only catch is he is busy as can be, but he will make the time.
So, on Wednesday he came over to see the leak downstairs, make measurements, and discuss possibilities. When he saw the dilapidated state of our neighbor’s kitchen, he offered to tell him for free how to fix it up. I must admit that my daughter picked a groom with a heart of gold.
And even though a “new bath” was behind a “new kitchen” on my “wish list”, it looks like we will get a refurbished bathroom. Because, if we have to tear out the tub to work underneath it, it doesn’t pay, long tern, to leave things as they are now. It’s almost as if we are being told: “NOW is the time!” [Especially as we will be getting it done at cost price, litterally. Also we are leaving intact anything that is still passable and likely to hold up for the near future. I am not chucking out anything JUST to get "new" if not necessary.]
** There is a Jewish tradition/saying that if a woman has seven sons in a row she is promised heaven: because hell she had already. LOL. I guess I’ll have to do something else to deserve heaven, since my six boys are broken in the middle by Ricki’s older sister. A household of teenage boys is a wild ride, I must admit. But I don’t regret it for a moment.
And a final Note: This downstairs neighbor is the one with the chicken(s). (See post on Elul from September 1st.) When I went to look at the leak on Tuesday night, I noticed that they have only one left. Amazing that one hen can cackle so much!
Thursday, September 4, 2008
Bureaucracy, Israeli Style-or- How do People Who Work Manage?
I have yet to figure out how people who work full-time manage. I do not work full-time, yet I do not sleep enough. In addition, I am constantly behind in my lists of “things I want to do”. [Although, as I frequently have pointed out to friends and relatives: An intelligent, creative person has a major problem: They can think up good ideas and projects much faster than they can carry said projects out….] I could easily consider myself at least part-time employed, as the adaptations and homework for Ricki easily take (on the average) a few hours each day. [One of the reasons for this is because I am not working in my mother tongue, which slows me down considerably.]
But when one has a steady job, who does all the zillion and one tasks that bureaucracy turns into terrific time drains????
Last week I had to go to the health fund’s office (non-Israelis see the start of this post for elucidation) in order to get a voucher for Ricki’s upcoming eye surgery. Now understand that every office in Israel is open at different hours. Some work 9-1, and then reopen from 4-7, others work straight through from 9-5. Some are agile and workaholics, opening at 8:00, other places and stores open at 9:00 or 10:00. The post office is closed on Tuesday afternoons, the bank on Wednesdays, and optometrists are usually closed on Sunday afternoon. (Sunday being a regular workday here.) Some places are open on Friday morning (Friday being a half-day workday); others are not.
So I decided to be smart. I checked the health-fund’s booklet, and was pleased that it was open at 2:00 on the day I wanted to go. I went, and a sign on the locked entranceway informed me that the hours had been changed. Tough luck and an entire hour was shot just like a slap on the face.
Just try and go shopping for a list of ten things. I had a morning I scheduled for “errands” last week. I prepared the money, the papers, and figured out the best order in which to trek from one store to the next.
I took a bus up a big hill to my first stop (better to work going down the hill than up, my lazy side had decided). The first store was closed; they were on vacation. At my second stop, I purchased everything I had on my list from that store, except for one item that they were temporarily out of. My third stop, was, amazingly an astounding success. At the fourth place they said that they no longer carry the item I was looking for; I should try at store “Y” (no guarantees though), this store of course being located back up the hill near stop number one. So I sweated up (36 degrees centigrade, humidity 65%) the hill, only to be told in said place of business, that she could not and would not order the item in question. Then I went as fast as I could to reach my next-to-the -last stop, the post office, There the line was huge. [Do I stay in line, and finish so late that I will have no time to reach the pharmacy (last destination)? Or should I go to the pharmacy and then have to return another day to the post office?] I opted to stay in line at the post office, to pick up the book I was expecting, and had a receipt for. {Much more enticing to get a book than some medicine….) After standing in line (there being 2 seats for twenty people ) my turn arrived. She pointed at two letters scribbled on the bottom of the receipt. “It’s true that they should have sent the package to our branch, as they always do, but for some reason they sent it to the branch in XXX neighborhood. The sorting office has summer help, so someone new must have botched up.” She gave me a phone number to call, to have the package sent to her branch, or I could take a half-hour bus ride to the other branch. Sum total: I spent one morning dragging myself through the streets in the ferocious heat, and only accomplished about one-half of my errands.
On arriving home, I called the number I had been given of the sorting office. I started to tell my tale, and got hung up on. So the next day, I went across town. But,No….the package was not there, it had been sent back to the sorting area, someone realizing that it was not destined for anyone living in that area. Five days later the package resurfaced, and I thankfully was able to retrieve it.
So, tell me, how do people who work manage?
But when one has a steady job, who does all the zillion and one tasks that bureaucracy turns into terrific time drains????
Last week I had to go to the health fund’s office (non-Israelis see the start of this post for elucidation) in order to get a voucher for Ricki’s upcoming eye surgery. Now understand that every office in Israel is open at different hours. Some work 9-1, and then reopen from 4-7, others work straight through from 9-5. Some are agile and workaholics, opening at 8:00, other places and stores open at 9:00 or 10:00. The post office is closed on Tuesday afternoons, the bank on Wednesdays, and optometrists are usually closed on Sunday afternoon. (Sunday being a regular workday here.) Some places are open on Friday morning (Friday being a half-day workday); others are not.
So I decided to be smart. I checked the health-fund’s booklet, and was pleased that it was open at 2:00 on the day I wanted to go. I went, and a sign on the locked entranceway informed me that the hours had been changed. Tough luck and an entire hour was shot just like a slap on the face.
Just try and go shopping for a list of ten things. I had a morning I scheduled for “errands” last week. I prepared the money, the papers, and figured out the best order in which to trek from one store to the next.
I took a bus up a big hill to my first stop (better to work going down the hill than up, my lazy side had decided). The first store was closed; they were on vacation. At my second stop, I purchased everything I had on my list from that store, except for one item that they were temporarily out of. My third stop, was, amazingly an astounding success. At the fourth place they said that they no longer carry the item I was looking for; I should try at store “Y” (no guarantees though), this store of course being located back up the hill near stop number one. So I sweated up (36 degrees centigrade, humidity 65%) the hill, only to be told in said place of business, that she could not and would not order the item in question. Then I went as fast as I could to reach my next-to-the -last stop, the post office, There the line was huge. [Do I stay in line, and finish so late that I will have no time to reach the pharmacy (last destination)? Or should I go to the pharmacy and then have to return another day to the post office?] I opted to stay in line at the post office, to pick up the book I was expecting, and had a receipt for. {Much more enticing to get a book than some medicine….) After standing in line (there being 2 seats for twenty people ) my turn arrived. She pointed at two letters scribbled on the bottom of the receipt. “It’s true that they should have sent the package to our branch, as they always do, but for some reason they sent it to the branch in XXX neighborhood. The sorting office has summer help, so someone new must have botched up.” She gave me a phone number to call, to have the package sent to her branch, or I could take a half-hour bus ride to the other branch. Sum total: I spent one morning dragging myself through the streets in the ferocious heat, and only accomplished about one-half of my errands.
On arriving home, I called the number I had been given of the sorting office. I started to tell my tale, and got hung up on. So the next day, I went across town. But,No….the package was not there, it had been sent back to the sorting area, someone realizing that it was not destined for anyone living in that area. Five days later the package resurfaced, and I thankfully was able to retrieve it.
So, tell me, how do people who work manage?
Wednesday, September 3, 2008
special exposure Wednsday..but not "wordless". My regular Blog is Beneath This
This picture is one of my favorite shots of Ricki, even though her face is a bit in shadow. I call it "AWE".
And what is so "awesome"? Calypso cascades, Rocky Mountain Park, Colorado (Taken last year when visiting my parents.)
Tuesday, September 2, 2008
Musings on a Wednesday Morning.
A few years ago I was reading Downsed's* Issues and Information booklet on social skills. (Now available on-line,see here ) They had a list with the percentages of teens/adults (with Down syndrome) who could do certain independence skills. I noticed that use of a microwave was only a low 24%, and decided then and there to teach Ricki to use a microwave, at least for warming up food.
It was one of the biggest mistakes I have ever made. It opened a "Pandora's box" for Ricki. Suddenly, warming and eating vast quantities of soy patties had become easy. One just had to make sure that no one caught you taking too many.
And- as happens occasionally- if Ricki would hear someone coming, she had an easy and quick solution: discard the incriminating evidence as soon as possible. We began finding half-eaten soy patties behind the computer, on the sidewalk downstairs, etc. This behavior has since extended to any article she is overeating. So last night she dumped out a glass of milk that I caught her drinking in the middle of the night.Never mind that this meant "no milk for coffee in the morning", a distinct set-back for a coffee addict like myself.
So bright and early this morning I meandered into the local grocery. I didn't even glance at the pastry section: I know this is taboo for me. However,as I was paying, I couldn't help but notice the pastry the woman behind me was holding: a jelly-filled doughnut (sufganiyah).(This is a holiday food for channukah, which will start in about four months.) I did a double-take: "It's not even Rosh HaShanah yet!" I yelped in surprise. They even beat last year by 6 weeks. (See my views regarding this in my blog from February 6th, here.) For Americans, this would be akin to selling Halloween costumes before the fourth of July.
Am I the only one who thinks that commercialism has gone a bit too far?
* Any parents of children with Down syndrome who are NOT familiar with Downsed of England (Sue Buckley's place), should definitely check out their website (here).They have a wealth of up-to-date research-based information. They are currently publishing on-line more and more material from their publications.
It was one of the biggest mistakes I have ever made. It opened a "Pandora's box" for Ricki. Suddenly, warming and eating vast quantities of soy patties had become easy. One just had to make sure that no one caught you taking too many.
And- as happens occasionally- if Ricki would hear someone coming, she had an easy and quick solution: discard the incriminating evidence as soon as possible. We began finding half-eaten soy patties behind the computer, on the sidewalk downstairs, etc. This behavior has since extended to any article she is overeating. So last night she dumped out a glass of milk that I caught her drinking in the middle of the night.Never mind that this meant "no milk for coffee in the morning", a distinct set-back for a coffee addict like myself.
So bright and early this morning I meandered into the local grocery. I didn't even glance at the pastry section: I know this is taboo for me. However,as I was paying, I couldn't help but notice the pastry the woman behind me was holding: a jelly-filled doughnut (sufganiyah).(This is a holiday food for channukah, which will start in about four months.) I did a double-take: "It's not even Rosh HaShanah yet!" I yelped in surprise. They even beat last year by 6 weeks. (See my views regarding this in my blog from February 6th, here.) For Americans, this would be akin to selling Halloween costumes before the fourth of July.
Am I the only one who thinks that commercialism has gone a bit too far?
* Any parents of children with Down syndrome who are NOT familiar with Downsed of England (Sue Buckley's place), should definitely check out their website (here).They have a wealth of up-to-date research-based information. They are currently publishing on-line more and more material from their publications.
Oh, Late Nights…the New School Year has Begun.
The new school year always starts out in a bit of a jumble. First of all, there is no permanent schedule. As every year, I wonder to myself why can’t they start working on the schedule earlier, and have it ready on time? I am sure there must be a good reason, but since I am not a teacher, nor administrator, I have not been let in on the secret.
When we do get the final schedule, I will need to slave several hours over the plan, deciding when she will be in class, and when out. Then I will have to make “communication” sheets for each day of the week, (like that shown below).
[The circles are points for good behavior. Subjects are at the right, pink being "in class", and light green "out" (private tutoring).All the blank area on the back gives the aide room to write what was studied, that Ricki didn't really get the smiley circle she drew for herself for science class, etc.]
But that is OK. What irks me is that the schedule we will receive in about a week, will only be the timetable for a few months, and mid-winter I will have to do it all over again. And meantime, I have to prepare each day a “communication” sheet, which has little to do with the final schedule. And this all adds up to a lot of uncalled-for work.
The second problem of the new school year is that I do not yet know the teachers, nor their phone numbers. Today Ricki has science, but I don’t have the faintest idea what the teacher will be covering in class. This makes preparation of materials impossible.
At least her homeroom teacher, who I did speak to, has agreed, at least in theory, to get her planned topics to me a day in advance. She sounds open to ideas, and should work out OK.
When we do get the final schedule, I will need to slave several hours over the plan, deciding when she will be in class, and when out. Then I will have to make “communication” sheets for each day of the week, (like that shown below).
[The circles are points for good behavior. Subjects are at the right, pink being "in class", and light green "out" (private tutoring).All the blank area on the back gives the aide room to write what was studied, that Ricki didn't really get the smiley circle she drew for herself for science class, etc.]
But that is OK. What irks me is that the schedule we will receive in about a week, will only be the timetable for a few months, and mid-winter I will have to do it all over again. And meantime, I have to prepare each day a “communication” sheet, which has little to do with the final schedule. And this all adds up to a lot of uncalled-for work.
The second problem of the new school year is that I do not yet know the teachers, nor their phone numbers. Today Ricki has science, but I don’t have the faintest idea what the teacher will be covering in class. This makes preparation of materials impossible.
At least her homeroom teacher, who I did speak to, has agreed, at least in theory, to get her planned topics to me a day in advance. She sounds open to ideas, and should work out OK.
Monday, September 1, 2008
Tagged
WARNING: Don't let this post make you miss my real post for today (below).
I was "tagged" by Renee from "Life with my special k's" and given an award. Thanks Renee, its nice to know that someone likes what I write. However, I am going to cheat a bit on the rules, and send this out to less than 7 people. I don't have time to read that many blogs.
Now here are the people whose blogs I think are really worth the time. I DO enjoy other blogs, but these strike me as deserving:
1. Terri at Barriers, Bridges and Books writes eloquently, mostly on disability issues, but I think anyone should be interested. See her posts of August 22 and 23.They are on disability, but are very thought-provoking.
2.Trish at another piece of the puzzle has in general lighter stuff than Terri, but has a lot of good ideas.Generally more relavent for those in the special needs crowd.
3.The Sandman, here, is written by an Israeli anesthesiologist. I just discovered this blog recently, but it makes interesting reading. As a nurse, I never realized how involved anesthesiologists were with their patients and their care.....
4. Carolyn at "Juggling Frogs" ... Pure common sense, from a mom in Massachusetts. Men, (do any men read here????) and any woman wanting a good laugh, go read her July 5th 2007 post (its on her sidebar) "Top 10 acceptable answers to 'Does this outfit Make me look fat?'"
I was "tagged" by Renee from "Life with my special k's" and given an award. Thanks Renee, its nice to know that someone likes what I write. However, I am going to cheat a bit on the rules, and send this out to less than 7 people. I don't have time to read that many blogs.
Now here are the people whose blogs I think are really worth the time. I DO enjoy other blogs, but these strike me as deserving:
1. Terri at Barriers, Bridges and Books writes eloquently, mostly on disability issues, but I think anyone should be interested. See her posts of August 22 and 23.They are on disability, but are very thought-provoking.
2.Trish at another piece of the puzzle has in general lighter stuff than Terri, but has a lot of good ideas.Generally more relavent for those in the special needs crowd.
3.The Sandman, here, is written by an Israeli anesthesiologist. I just discovered this blog recently, but it makes interesting reading. As a nurse, I never realized how involved anesthesiologists were with their patients and their care.....
4. Carolyn at "Juggling Frogs" ... Pure common sense, from a mom in Massachusetts. Men, (do any men read here????) and any woman wanting a good laugh, go read her July 5th 2007 post (its on her sidebar) "Top 10 acceptable answers to 'Does this outfit Make me look fat?'"
Elul, Shofer,Chickens, and Teshuva (Repentance)
Preface:
Well, this month we have an oddity: The Jewish month (in this case, Elul), matches up with the Gregorian calendar. Today is the first of September, and the first day of Elul. [Now many times that is not the case, but September can start, often, in the middle or even 2/3 of the way into Elul.] This situation is a teacher’s paradise: She has an entire month to cover the material on the Jewish New Year and holidays that immediately follow, instead of 10-20 days. Elul itself has a special character, marked by the blowing of a shofer (ram’s horn) each morning in the synagogue. It is a time for doing teshuva , repentance, before the new year starts at the end of the month.
The Blog:
We live in a building which is attached on one side to the building next door, which happens to be a synagogue. Years ago, I loved to hear the shofer blasts each morning wafting upward to my third-floor apartment from the open windows below. Then, about ten years ago they installed air conditioning. Now far be it from me to begrudge them their air-conditioning…. But it does mean that their windows are closed and I no longer hear the cry of the shofer to do teshuva, quickly, before the next month, Tishre, arrives. And, sadly, without the prodding of the shofer, my contemplations on repentance were non-existent. I was too caught up in the everyday morning rush to pause and muse over any attempts at self-improvement.. (ME??? CHANGE???) This was until my neighbors “gave” me a substitute: a bunch of cackling hens.
Now I am willing to swear on the Bible that the following is not made up. My downstairs neighbors have in their apartment mirpeset (enclosed porch) a bunch of hens. [No, this is NOT usual for suburban Israel, nor for chareidi (ultra-orthodox) families. Not at all….] I know that they are hens, not roosters because they did (note past tense) have a rooster (note singular form) until recently. At one point the neighbors made it clear to said tenants that Mr. Rooster was no longer welcome in the building. He had gotten so enthusiastic about “singing his morning praises to G-d” at the unearthly hour of 5 AM …..and not once, but in an uninterrupted flow of crowing ("cock-a-doodle-do"/ “ku-ku-ri-ku”)…that the neighbors protested vehemently. So Mr. Rooster got sent to the slaughterer.
So Mr. Rooster’s wives are left, and I noticed these last few mornings that they really made quite a commotion by themselves. The term “cackling like old mother hens” takes on a much more vivid meaning to me. And I think they (or rather, G-d, through them) have a message for me. And perhaps for you.
I have been blogging for 9 1/2 months already, and have written over 250 posts in that time. I guess I have a lot to say. And, not surprisingly, I think it usually is interesting and has content. I hope my readers agree. And I hope I never “cackle” like a hen, just to have a “blog” to write. I think that my time, and yours, is too valuable. That is my first point.
My second point is as follows. I mostly blog about life from the “special-needs” perspective. Not very many of my posts come from a specific “Israeli” standpoint. And my readership has followed suit. However, over the last few days, having more time during vacation, I started checking out Israeli and Jewish blogs, to see if there were any worth “wasting” my time on. And some are. But I noticed one thing that saddened me very much. (And this is true not only about Jewish bloggers, but I would hope the “family” would have higher standards.) I noticed a lot of condemnations of others, an unwillingness to judge others favorably. A feeling that if someone disagrees with me, by G-d, I’ll stuff it down his throat.
Now we all have ideals, principles, and viewpoints. But I would like to see a bit less cackling out there. From all of us.
Happy Elul, Everyone!
Well, this month we have an oddity: The Jewish month (in this case, Elul), matches up with the Gregorian calendar. Today is the first of September, and the first day of Elul. [Now many times that is not the case, but September can start, often, in the middle or even 2/3 of the way into Elul.] This situation is a teacher’s paradise: She has an entire month to cover the material on the Jewish New Year and holidays that immediately follow, instead of 10-20 days. Elul itself has a special character, marked by the blowing of a shofer (ram’s horn) each morning in the synagogue. It is a time for doing teshuva , repentance, before the new year starts at the end of the month.
The Blog:
We live in a building which is attached on one side to the building next door, which happens to be a synagogue. Years ago, I loved to hear the shofer blasts each morning wafting upward to my third-floor apartment from the open windows below. Then, about ten years ago they installed air conditioning. Now far be it from me to begrudge them their air-conditioning…. But it does mean that their windows are closed and I no longer hear the cry of the shofer to do teshuva, quickly, before the next month, Tishre, arrives. And, sadly, without the prodding of the shofer, my contemplations on repentance were non-existent. I was too caught up in the everyday morning rush to pause and muse over any attempts at self-improvement.. (ME??? CHANGE???) This was until my neighbors “gave” me a substitute: a bunch of cackling hens.
Now I am willing to swear on the Bible that the following is not made up. My downstairs neighbors have in their apartment mirpeset (enclosed porch) a bunch of hens. [No, this is NOT usual for suburban Israel, nor for chareidi (ultra-orthodox) families. Not at all….] I know that they are hens, not roosters because they did (note past tense) have a rooster (note singular form) until recently. At one point the neighbors made it clear to said tenants that Mr. Rooster was no longer welcome in the building. He had gotten so enthusiastic about “singing his morning praises to G-d” at the unearthly hour of 5 AM …..and not once, but in an uninterrupted flow of crowing ("cock-a-doodle-do"/ “ku-ku-ri-ku”)…that the neighbors protested vehemently. So Mr. Rooster got sent to the slaughterer.
So Mr. Rooster’s wives are left, and I noticed these last few mornings that they really made quite a commotion by themselves. The term “cackling like old mother hens” takes on a much more vivid meaning to me. And I think they (or rather, G-d, through them) have a message for me. And perhaps for you.
I have been blogging for 9 1/2 months already, and have written over 250 posts in that time. I guess I have a lot to say. And, not surprisingly, I think it usually is interesting and has content. I hope my readers agree. And I hope I never “cackle” like a hen, just to have a “blog” to write. I think that my time, and yours, is too valuable. That is my first point.
My second point is as follows. I mostly blog about life from the “special-needs” perspective. Not very many of my posts come from a specific “Israeli” standpoint. And my readership has followed suit. However, over the last few days, having more time during vacation, I started checking out Israeli and Jewish blogs, to see if there were any worth “wasting” my time on. And some are. But I noticed one thing that saddened me very much. (And this is true not only about Jewish bloggers, but I would hope the “family” would have higher standards.) I noticed a lot of condemnations of others, an unwillingness to judge others favorably. A feeling that if someone disagrees with me, by G-d, I’ll stuff it down his throat.
Now we all have ideals, principles, and viewpoints. But I would like to see a bit less cackling out there. From all of us.
Happy Elul, Everyone!
Sunday, August 31, 2008
The Last Day of Vacation
Years ago the first day of school was my dream. (Keep in mind that most of my offspring are masculine. ..argumentative, principled, opinionated masculine….) The first day of school was the bliss of a cup of coffee drunk in the quiet solitude of the living room, sitting in an armchair and gazing out the window. The job of referee, of peace-keeper, of maid and short-order cook had been shelved for a while.
Today I no longer feel this way. Due to the fact that I am Ricki’s schoolwork adaptor (for 80% of her classes), and much more, the school year ahead will be a busy one. This week alone I will have to talk to new teachers, explaining what (and how) we are doing, arrange her schedule, and much much more.
But that’s not the real reason I am sorry that the vacation ended. I dreamt of doing so many fun things with Ricki this summer. I wanted to bake, cook, do crafts, go to the beach, and much more. However, because I had set her up in several summer programs, and for various other reasons (including classmates who took her out a lot), we had few opportunities to share the activities that I had hoped to do with her. Of course, the bottom line is that she enjoyed the summer, and had a break.
At least one good thing. September is starting, and that means that summer and its heat should be ending soon. Now THAT I’ll celebrate! (Last week the temperature was about 90 degrees Fahrenheit, with about 80% relative humidity……)
Today I no longer feel this way. Due to the fact that I am Ricki’s schoolwork adaptor (for 80% of her classes), and much more, the school year ahead will be a busy one. This week alone I will have to talk to new teachers, explaining what (and how) we are doing, arrange her schedule, and much much more.
But that’s not the real reason I am sorry that the vacation ended. I dreamt of doing so many fun things with Ricki this summer. I wanted to bake, cook, do crafts, go to the beach, and much more. However, because I had set her up in several summer programs, and for various other reasons (including classmates who took her out a lot), we had few opportunities to share the activities that I had hoped to do with her. Of course, the bottom line is that she enjoyed the summer, and had a break.
At least one good thing. September is starting, and that means that summer and its heat should be ending soon. Now THAT I’ll celebrate! (Last week the temperature was about 90 degrees Fahrenheit, with about 80% relative humidity……)
Friday, August 29, 2008
Ricki and the too-big book
The other day, when I took Ricki to the eye doctor, I suggested that she take a book from home to read. Of course she didn’t want the one I suggested, but rather a VERY BIG one that wouldn’t fit into her small backpack. I warned her that she would have to carry it.
On the way home, the usual happened… she started shoving the book over to me. I decided that this time she is going to learn a lesson, even if it means the loss of the book. So I returned the book to her. She threw it back to me. I put it on the window of the bus we were on… she returned the book to me. Just then a friend of mine who also has a child with Down syndrome* entered the bus. She quickly sized up the situation. Smiling, I handed her the book.
Suddenly Ricki piped up: “That’s ours!”
-“So than YOU carry it!”
And she did. (We’ll see if it has any carry-over effect to next time.)
*that’s how we met…
On the way home, the usual happened… she started shoving the book over to me. I decided that this time she is going to learn a lesson, even if it means the loss of the book. So I returned the book to her. She threw it back to me. I put it on the window of the bus we were on… she returned the book to me. Just then a friend of mine who also has a child with Down syndrome* entered the bus. She quickly sized up the situation. Smiling, I handed her the book.
Suddenly Ricki piped up: “That’s ours!”
-“So than YOU carry it!”
And she did. (We’ll see if it has any carry-over effect to next time.)
*that’s how we met…
Thursday, August 28, 2008
The Tale of Woe
As I mentioned on Tuesday, when we were at the eye doctor’s, his secretary had instilled eye drops in Ricki’s eyes. Then she recommended that we walk around “downstairs” for half-an-hour, while they took effect.
Due to the heat wave we have been having, “outside” was not an option (and anyway the sun is not good for dilating eyes). So we went into the nearby (very air conditioned) shopping mall. I stopped to look at some toys that might be nice for my grandkids, and Ricki simply disappeared. So I started searching for her, trying to curb a wave of panic. I went further down the center aisle, peaking in the store windows, and soon reached a “hub”. One quick glance showed me that I had three floors, and four directions in which I could search.
-How long would it take until Ricki realized that she was lost?
-Would she remember what I have taught her about telling salesladies if she gets lost?
-If I search further, will she come out of a store behind me, go back to the place I had stopped? And then perhaps she would try and look for me in the 25-story office building we had come from?
I paused. What was she most likely to go for? Answer: food. I spotted a candy store just ahead… and yes, she was there.
No, I did not buy her candy. (I asked the store owner if he doesn’t get harried parents dealing with toddlers grabbing sweets, and yes he does….)
I purchased her a drink (decided was better to give in on that to start with, and not argue without end…), gave her a piece of my mind, and headed back upstairs. We made it back, amazingly, on time.
Now I am thinking that I have to sit down with her today, and calmly explain my fears, the dangers, and the to-be-expected consequences of any repeats to this “activity”.
Due to the heat wave we have been having, “outside” was not an option (and anyway the sun is not good for dilating eyes). So we went into the nearby (very air conditioned) shopping mall. I stopped to look at some toys that might be nice for my grandkids, and Ricki simply disappeared. So I started searching for her, trying to curb a wave of panic. I went further down the center aisle, peaking in the store windows, and soon reached a “hub”. One quick glance showed me that I had three floors, and four directions in which I could search.
-How long would it take until Ricki realized that she was lost?
-Would she remember what I have taught her about telling salesladies if she gets lost?
-If I search further, will she come out of a store behind me, go back to the place I had stopped? And then perhaps she would try and look for me in the 25-story office building we had come from?
I paused. What was she most likely to go for? Answer: food. I spotted a candy store just ahead… and yes, she was there.
No, I did not buy her candy. (I asked the store owner if he doesn’t get harried parents dealing with toddlers grabbing sweets, and yes he does….)
I purchased her a drink (decided was better to give in on that to start with, and not argue without end…), gave her a piece of my mind, and headed back upstairs. We made it back, amazingly, on time.
Now I am thinking that I have to sit down with her today, and calmly explain my fears, the dangers, and the to-be-expected consequences of any repeats to this “activity”.
A Sad Story- All Israel is Sick Over This
Doesn't she look like too cute of a four-year old to die?
Well, die she did-murdered by her own relatives.By her grandfather, aparently who is her step-father as well (sick people do a lot of sick things....). And aparently the mother knew or suspected, if not more. And her father also didn't want her.
Why? She didn't speak well, she made in her pants, she was hard to handle. She had some "special needs" that no one took the pains to work on. No speach therapy, no treatment. No one wanted her. Just neglect,abuse... and death.
Her parents could have given her up for adoption. They could have asked for foster care. But they didn't care at all. So a cute kid, who probably could have been OK if someone had cared, was abused and murdered.
Torah says that G-d made man in the image of G-d. Gosh, it's awfully hard to see that image sometimes.
What message do we take from this? Those of us who are in the position to advise, give aid and support, to families of kids with disabilities, need to know that we can save lives.We can make lives abuse-free. We have to help parents come to terms with problems, cope with them, and get help. These things do not have to happen.
Wednesday, August 27, 2008
Cheers for Ricki!!!
Ricki really deserves cheers today! Today we went to get her blood tests done. She needs a blood count done before her eye operation, and we rushed to do it this week, so that we would avoid her losing school time for the blood work. (Here school starts only next week.)
So why does Ricki deserve cheers? (And I mean CHEERS!) A bit of history:
Ricki is no dummy, and her memory is quite good. Especially in things that relate to her…. And she has a super-duper memory regarding things that she does not like. Number one on that list is blood tests. Having been the frequent pin cushion for various needles, Ricki developed over the years a sincere dislike for blood tests. “Sincere dislike” translates into absolute refusal to cooperate, even with distractions, explanations in advance, and promises of prizes. Four years ago we had to hold her down physically by force for an urgent test. The two tests since then were better. Both times she was prepared in advance, promised prizes, and we used distraction as well. Nevertheless, she still needed to have her arm held rather forcibly by a second technician. Even though she had promised to cooperate, the second that she saw the needle, she panicked.
So this morning when I mentioned that she had to go for blood tests, she turned to me and said: “I am a big girl. I can do it…..Will it hurt?” She even said that she would go in alone, similar to when we went to the dentist last time. (See post for July 10th). When we arrived at the lab, she indicated that she yes wanted me to join her. And a second technician held her arm, as a precaution.
Ricki was fantastic. She didn’t fight the test. She was marvelous….she was magnificent. She acted like a grown-up.
Later, we went into a store to buy her a drink. There she figured out which coin to use for the purchase, and the change due us. People there where so surprised. “Oh, you’re fantastic”, they said to me. (You know what I mean, that tone of voice used when passersby want to confer sainthood on you for being the mom of a child with special needs.) And I thought to myself… no, this morning, RICKI deserves that title!
* * * * * * * *
And here is a photo for “Special exposure Wednesday!
Here Ricki is almost ready for Shabbas (Saturday), just needs to brush her hair still. (She thinks it’s brushed; she’ll have to try again. You can see here a bit of the cross-eye. Sometimes it is worse.
So why does Ricki deserve cheers? (And I mean CHEERS!) A bit of history:
Ricki is no dummy, and her memory is quite good. Especially in things that relate to her…. And she has a super-duper memory regarding things that she does not like. Number one on that list is blood tests. Having been the frequent pin cushion for various needles, Ricki developed over the years a sincere dislike for blood tests. “Sincere dislike” translates into absolute refusal to cooperate, even with distractions, explanations in advance, and promises of prizes. Four years ago we had to hold her down physically by force for an urgent test. The two tests since then were better. Both times she was prepared in advance, promised prizes, and we used distraction as well. Nevertheless, she still needed to have her arm held rather forcibly by a second technician. Even though she had promised to cooperate, the second that she saw the needle, she panicked.
So this morning when I mentioned that she had to go for blood tests, she turned to me and said: “I am a big girl. I can do it…..Will it hurt?” She even said that she would go in alone, similar to when we went to the dentist last time. (See post for July 10th). When we arrived at the lab, she indicated that she yes wanted me to join her. And a second technician held her arm, as a precaution.
Ricki was fantastic. She didn’t fight the test. She was marvelous….she was magnificent. She acted like a grown-up.
Later, we went into a store to buy her a drink. There she figured out which coin to use for the purchase, and the change due us. People there where so surprised. “Oh, you’re fantastic”, they said to me. (You know what I mean, that tone of voice used when passersby want to confer sainthood on you for being the mom of a child with special needs.) And I thought to myself… no, this morning, RICKI deserves that title!
* * * * * * * *
And here is a photo for “Special exposure Wednesday!
Here Ricki is almost ready for Shabbas (Saturday), just needs to brush her hair still. (She thinks it’s brushed; she’ll have to try again. You can see here a bit of the cross-eye. Sometimes it is worse.
Tuesday, August 26, 2008
Try this Tuesday- Timer and Homework
I have found the timer useful in doing homework. On one side, Ricki wanted, as a teen, more independence. Sitting beside her only led to her turning her back and trying to hide her work. But since she is included, she does need help at times with her homework. So I now explain a task, set the timer for 5 minutes, telling her that she should work alone for 5 minutes. Then I go and do some housework in a different room, and when the timer rings, I come to check her work, give help if needed, etc.. This way I get more done during the day, and she works more independently.
Obviously, positive reinforcement for effort and good work can be added in.
Also, it is important, VERY important, to praise the child’s efforts to work independently. On returning to check the work, avoid critical comments about the results. Any corrections that need to be made should be sandwhiched between positive points. For example:
“Ricki, I can see that you sat for the full five minutes and worked very hard. You wrote in the line. Very nice! By the way, “their” is spelled “ei”. I’ll write that here on this note, and you can copy from there. I see that you crossed your t’s very nicely.”
On Doctors , Appointments, and Being on Time
Several months ago, I wrote a piece about the need for doctors and therapists not to over schedule…IE to receive their clients reasonably close to the appointment’s set hour. (See post of December 17th, 2007)
Today I saw the other side.
This afternoon I had an appointment for Ricki at a top eye doctor, for 4:50 pm, for examination and evaluation of cross-eye. On the way there, on the bus, the lady sitting across from us was very personable… and, as it turned out, was going to the same doctor we were! This was a G-d-send for me, as I had never been to this doctor before, and she had. As we exited the bus, I said how happy I was that she was with me, as her knowing the way would help me reach the 4:50 appointment on time. She laughed, and said that her appointment was for 3:45.
We arrived to a packed waiting room. When the doctor next exited his private sanctum, he queried: “Is Mrs. X here yet?” The lady from the bus waved, announcing her presence. He then commented: “OK, everyone, you can set your watches, it is now 3:45!” Everyone looked very puzzled. Only two in the room understood: the lady in question, and me. Apparently hers had been the first appointment, and he had lost valuable time.
Actually, I do not condone the behavior of either. Theoretically, he should have told her in private. And she certainly should have been on time. (I of course do not know—she may have had a very pressing reason for her lateness. But she hadn’t seemed perturbed, which is why I suspect that she had not made any effort to arrive promptly.)
I’ll say this, though. The doctor’s office ran smooth as butter. We were in to see him within 30 minutes of arrival. He examined her, put in eye drops, and his secretary recommended that we take a walk for half an hour in the mall downstairs. (What went on in the mall is a tale of woe, but it will have to wait…)
And the final note: Ricki will need surgery for her crossed eyes.
Today I saw the other side.
This afternoon I had an appointment for Ricki at a top eye doctor, for 4:50 pm, for examination and evaluation of cross-eye. On the way there, on the bus, the lady sitting across from us was very personable… and, as it turned out, was going to the same doctor we were! This was a G-d-send for me, as I had never been to this doctor before, and she had. As we exited the bus, I said how happy I was that she was with me, as her knowing the way would help me reach the 4:50 appointment on time. She laughed, and said that her appointment was for 3:45.
We arrived to a packed waiting room. When the doctor next exited his private sanctum, he queried: “Is Mrs. X here yet?” The lady from the bus waved, announcing her presence. He then commented: “OK, everyone, you can set your watches, it is now 3:45!” Everyone looked very puzzled. Only two in the room understood: the lady in question, and me. Apparently hers had been the first appointment, and he had lost valuable time.
Actually, I do not condone the behavior of either. Theoretically, he should have told her in private. And she certainly should have been on time. (I of course do not know—she may have had a very pressing reason for her lateness. But she hadn’t seemed perturbed, which is why I suspect that she had not made any effort to arrive promptly.)
I’ll say this, though. The doctor’s office ran smooth as butter. We were in to see him within 30 minutes of arrival. He examined her, put in eye drops, and his secretary recommended that we take a walk for half an hour in the mall downstairs. (What went on in the mall is a tale of woe, but it will have to wait…)
And the final note: Ricki will need surgery for her crossed eyes.
Monday, August 25, 2008
An Interesting Shabbas
[Introductory note: Shabbas (Saturday) is NOT a boring day. Although one can not watch TV or computer, knit, sew, or drive anywhere….It is far from boring. Exactly because it is a day that you can not use to catch up on housework or finish the report for your boss, it is a day that one can connect with family. I also read a lot. However, for my son Yitzchak, Ricki’s brother who is still at home (him being 2 years her senior), shabbas has been a bit boring lately. He does not enjoy reading (I have yet to figure out how the “reading genes” in our family didn’t kick in here…..). Yitzchak’s two older brothers (ages 18 and 20) are currently rooming together in a rented apartment. This has sort of left Yitzchak in a lurch, as he used to always do things with them on Saturday: walking, playing games, talking… With this introduction, you will understand my post much better.]
My oldest son, Yaacov, was here with his family for shabbas. He and his wife have a large family of four children: three boys (ages 7-3) and a daughter (age one and a half).
The daughter is finally walking, and so very different from her brothers. A female. Her mom said that she thought that much of the “girl” things that girls do are taught by culture. She expected her daughter, surrounded with boisterous siblings, to enjoy cars and ball. Yet she sees that her daughter has a much more gentle nature than her brothers. She strokes a doll that she picks up. She preens in front of a mirror. She is simply different.
I got out some speech cards for working on pragmatics, and played with Ricki and her oldest nephew. They enjoyed the funny pictures, and had a lot of fun. Ricki also had the pleasure of taking her niece out for a walk. A real treat for her.
Meanwhile, my second grandson was zooming around our house on a kick scooter. Our house is long and thin, an ideal set-up for accelerating vehicles.
I remember sometimes being bored at my grandparent’s house as a child. There really wasn’t much to do besides listen to adult conversation. But this grandmother, loaded with toys purchased over the years to use with Ricki, has a home that is far from boring. Yet my three-year-old grandson, living in an apartment with no windows facing the street, was more enthralled by the view of the street from our front window.
And my son Yitzchak had the best shabbas that he has had in a long time. His oldest nephew is one smart little kid, and Yitzchak enjoyed playing games with him. He also enjoyed holding his niece!
My oldest son, Yaacov, was here with his family for shabbas. He and his wife have a large family of four children: three boys (ages 7-3) and a daughter (age one and a half).
The daughter is finally walking, and so very different from her brothers. A female. Her mom said that she thought that much of the “girl” things that girls do are taught by culture. She expected her daughter, surrounded with boisterous siblings, to enjoy cars and ball. Yet she sees that her daughter has a much more gentle nature than her brothers. She strokes a doll that she picks up. She preens in front of a mirror. She is simply different.
I got out some speech cards for working on pragmatics, and played with Ricki and her oldest nephew. They enjoyed the funny pictures, and had a lot of fun. Ricki also had the pleasure of taking her niece out for a walk. A real treat for her.
Meanwhile, my second grandson was zooming around our house on a kick scooter. Our house is long and thin, an ideal set-up for accelerating vehicles.
I remember sometimes being bored at my grandparent’s house as a child. There really wasn’t much to do besides listen to adult conversation. But this grandmother, loaded with toys purchased over the years to use with Ricki, has a home that is far from boring. Yet my three-year-old grandson, living in an apartment with no windows facing the street, was more enthralled by the view of the street from our front window.
And my son Yitzchak had the best shabbas that he has had in a long time. His oldest nephew is one smart little kid, and Yitzchak enjoyed playing games with him. He also enjoyed holding his niece!
Sunday, August 24, 2008
Color Me Bleary-Eyed
One of the occupational hazards of not getting enough sleep during the week is that you oversleep on Shabbas (Saturday), and then on Saturday night it is SO easy to stay up terribly late. I confess to being a chronic offender.
So this morning (it’s still vacation here) I was less than thrilled when my neighbor’s phone rang… and rang… and rang…. For four long stretches between 7:00 am to 7:20. But I was tired enough to fall asleep again until 8:15, which is about the time I had planned to get up. Ricki, notably, is very good about not waking me if she sees that I am asleep.
So this morning (it’s still vacation here) I was less than thrilled when my neighbor’s phone rang… and rang… and rang…. For four long stretches between 7:00 am to 7:20. But I was tired enough to fall asleep again until 8:15, which is about the time I had planned to get up. Ricki, notably, is very good about not waking me if she sees that I am asleep.
Final Comment on Camp
The summation of Ricki’s camp experience was that she had a blast. She had a real, well-deserved vacation. And while there were a few points that upset me, that I thought could have been done differently, I have decided that the benefit to Ricki far outweighed any bad points.
Friday, August 22, 2008
The “Secrets” Corner
On of the better school-book publishers in Israel has put out some new workbooks for the “intellectually impaired”, for “high school” age. They looked interesting, and since I am always looking for things to use with Ricki, I ordered them. There were 5 booklets, three on social studies, and two about language skills. The day before yesterday the order finally arrived, so I spent that afternoon reading them and evaluating their usefulness. [Reading in Hebrew still takes me time, so it was an all-afternoon project.]
The three on social studies are basically on:
-taking responsibility, being part of a community
-rules, laws, legislature
-occupations… why people work, duties, and rights
The two on language were on various language skills, gathering information, emotions, and making choices.
In general, they are well done, and my money was well-spent. The language skills which are targeted are ones she has learned already, which shows, again, the low expectations here for special ed. “High school” level special ed is about what was Ricki’s sixth-grade level. But these booklets will be a good review, and they appear to be fun to work with. But one thing really bothered me.
In one language book, there is a collection of seven poems on emotions. (One of these Ricki studied in fourth grade.) One of the selections is a poem on “secrets in my heart”, i.e., things we feel but are afraid or embarrassed to say. On the bottom of one page is a colored corner that can be folded up. There are instructions to “write a secret of yours in the corner, and if you fold the flap up, it will remain a secret”.
REALLY??
GIMME A BREAK!
First, the allotted space is WAY too small for most students with intellectual disabilities to write in. Secondly, who is guaranteeing that this secret won’t be revealed? That the teacher, grading the booklet, won’t peak? Nor the parents? And not the classmates, sisters, and brothers? What about the right of people to keep their secrets?
So I fired off an angry email yesterday to the publisher. And I suggested that much better than asking students to reveal their secrets would be to promote a class discussion on “good” and “bad” secrets, and why it is important to reveal “bad” ones.
For such a good company to make this “corner” mistake is simply disappointing. I am afraid that it is symptomatic of the basic warped view of the intellectually-impaired that is so prevalent in this country.
The three on social studies are basically on:
-taking responsibility, being part of a community
-rules, laws, legislature
-occupations… why people work, duties, and rights
The two on language were on various language skills, gathering information, emotions, and making choices.
In general, they are well done, and my money was well-spent. The language skills which are targeted are ones she has learned already, which shows, again, the low expectations here for special ed. “High school” level special ed is about what was Ricki’s sixth-grade level. But these booklets will be a good review, and they appear to be fun to work with. But one thing really bothered me.
In one language book, there is a collection of seven poems on emotions. (One of these Ricki studied in fourth grade.) One of the selections is a poem on “secrets in my heart”, i.e., things we feel but are afraid or embarrassed to say. On the bottom of one page is a colored corner that can be folded up. There are instructions to “write a secret of yours in the corner, and if you fold the flap up, it will remain a secret”.
REALLY??
GIMME A BREAK!
First, the allotted space is WAY too small for most students with intellectual disabilities to write in. Secondly, who is guaranteeing that this secret won’t be revealed? That the teacher, grading the booklet, won’t peak? Nor the parents? And not the classmates, sisters, and brothers? What about the right of people to keep their secrets?
So I fired off an angry email yesterday to the publisher. And I suggested that much better than asking students to reveal their secrets would be to promote a class discussion on “good” and “bad” secrets, and why it is important to reveal “bad” ones.
For such a good company to make this “corner” mistake is simply disappointing. I am afraid that it is symptomatic of the basic warped view of the intellectually-impaired that is so prevalent in this country.
Thursday, August 21, 2008
The Old Lady on the Stairs
Yesterday I was at the “health fund” building. [Side-note: In Israel there is basically mandatory health care - socialized medicine- through various health funds. You join one fund, and through them you get doctors, nurses, and reimbursement for various medical procedures. This has its good side-- if you belong to a fund and give birth to a special-needs child, they have to accept him—but sometimes to get top-notch care you have to go private.]
So as I wrote above, I was in the health-fund building. I had gone to their office to receive reimbursement for a medical-supplies expenditure. On the way down the stairs, I noted two people in front of me. One was an elderly lady, navigating the stairs rather slowly, purse in hand. Behind her was a middle-aged woman. The middle-aged woman took a few steps forward, and grasped the arm of the older woman. “Here, let me help you.”
- “No thanks” responded the elderly woman.
- “At least let me take your bag for you.” Insisted the younger woman.
[I would note here that there was a working elevator that could have been used by anyone so desiring….]
Watching this lady who had forcibly invaded the body space of her neighbor on the stairs reminded me vividly about Dave Hingsburger’s numerous posts about hating it when people touched him, his chair, etc. (I doubt that I would have given this too much thought a year ago.) So I piped up:
-“Madam, I think that you should allow her to descend on her own, since that’s what she prefers.”
The old lady looked back at me, in surprise, and smiled. I almost winked back. Instead, I just smiled.
* * * * * * *
Ricki returns from camp late this evening. Tonight there is a “farewell party”, which I will have to waste my time on. But I will probably write about all this only on Sunday, as I have a different post lined up for tomorrow. (And saturday is my day of rest...)
So as I wrote above, I was in the health-fund building. I had gone to their office to receive reimbursement for a medical-supplies expenditure. On the way down the stairs, I noted two people in front of me. One was an elderly lady, navigating the stairs rather slowly, purse in hand. Behind her was a middle-aged woman. The middle-aged woman took a few steps forward, and grasped the arm of the older woman. “Here, let me help you.”
- “No thanks” responded the elderly woman.
- “At least let me take your bag for you.” Insisted the younger woman.
[I would note here that there was a working elevator that could have been used by anyone so desiring….]
Watching this lady who had forcibly invaded the body space of her neighbor on the stairs reminded me vividly about Dave Hingsburger’s numerous posts about hating it when people touched him, his chair, etc. (I doubt that I would have given this too much thought a year ago.) So I piped up:
-“Madam, I think that you should allow her to descend on her own, since that’s what she prefers.”
The old lady looked back at me, in surprise, and smiled. I almost winked back. Instead, I just smiled.
* * * * * * *
Ricki returns from camp late this evening. Tonight there is a “farewell party”, which I will have to waste my time on. But I will probably write about all this only on Sunday, as I have a different post lined up for tomorrow. (And saturday is my day of rest...)
Wednesday, August 20, 2008
On Worry and Death… and LIFE
My son D has decided he will not try and get any deferments from the army. And, actually, this is understandable… after all, he is NOT studying. So sometime this winter he should be drafted. But of course, just the idea makes me worry. (While I suspect he will be used as a driver, and not as a “warrior”, any job in the armed forces carries an element of risk.)
When I teach birthing classes, sometimes I have to talk about scary subjects: cesareans, forceps, fetal distress. The pregnant women tend to look rather apprehensive at these junctures. I warn them about this in our first session:
“I’d rather have you look green here, than have you sit here calmly and later, in birth panic if an emergency arises and you have no information to draw on.” Then I continue: “You know, you already are concerned about that baby. That’s part of being a mother. And you will worry about him until the day you die. You’ll have to send him on class trips, despite your fears…because you want him to participate. You will have to let them grow, be independent…despite your anxiety. That is part of this journey that you are embarking on.”
In actuality, we lie daily to our psyche: Even though we are often apprehensive about our offspring, we assume, barring special circumstances, that we are safe. We imagine living forever. In actuality there are no assurances. There are a lot of ways to die in this world. When my kids get scared about something (like bombs on buses, will Iran throw a bomb on Israel, etc.) I always say something like this:
“We don’t know how and when we will die. We can only choose how to live.”
Of course, worry does have it’s good side: fastening seatbelts, starting a diet. But other than that, we have to redirect our thoughts, and work on living the best we can.
(Now I’ll get off my soap box.)
When I teach birthing classes, sometimes I have to talk about scary subjects: cesareans, forceps, fetal distress. The pregnant women tend to look rather apprehensive at these junctures. I warn them about this in our first session:
“I’d rather have you look green here, than have you sit here calmly and later, in birth panic if an emergency arises and you have no information to draw on.” Then I continue: “You know, you already are concerned about that baby. That’s part of being a mother. And you will worry about him until the day you die. You’ll have to send him on class trips, despite your fears…because you want him to participate. You will have to let them grow, be independent…despite your anxiety. That is part of this journey that you are embarking on.”
In actuality, we lie daily to our psyche: Even though we are often apprehensive about our offspring, we assume, barring special circumstances, that we are safe. We imagine living forever. In actuality there are no assurances. There are a lot of ways to die in this world. When my kids get scared about something (like bombs on buses, will Iran throw a bomb on Israel, etc.) I always say something like this:
“We don’t know how and when we will die. We can only choose how to live.”
Of course, worry does have it’s good side: fastening seatbelts, starting a diet. But other than that, we have to redirect our thoughts, and work on living the best we can.
(Now I’ll get off my soap box.)
Tuesday, August 19, 2008
Try this Tuesday
I just wanted to add the following footnote to Trish's idea.
A digital camera is my best friend!(Besides word check spelling.)
Any activity that Ricki does, any outing, any family gathering, gets photographed. Than I can instantly use those pics for :
--Reading (make a booklet, story)
--a writing -sentences prompt
--speech work
I actually once wrote an article on this in Down synrome News and Update (Down's ED) (this article is best for the learning-to-read stage), which can be viewed online here:
http://www.down-syndrome.org/practice/238/
THIS ARTICLE HAS LOTS OF IDEAS
“Kol Tuv”
Yesterday, it seems, Ricki finally got homesick. She called up (via her volunteer’s cell phone) to say that she missed me. But she agreed that she was also having a great time. But, after all, she OUGHT to miss me after 6 days!
And if you ask what I have been doing with her gone, I will answer “Wasting way too much time.” But one thing I did do was re-view a video on speech problems in children with Down syndrome. In the section on pragmatics, they mentioned that we all use set “scripts” when doing certain things, like closing a phone conversation. And these can be learned. My “script” for finishing phone conversations is “Kol Tuv” (“Be well”).
Now if I hadn’t heard that video yesterday, I’m not sure I would have noticed Ricki’s sign off: “Kol Tuv”. That’s my girl!
And if you ask what I have been doing with her gone, I will answer “Wasting way too much time.” But one thing I did do was re-view a video on speech problems in children with Down syndrome. In the section on pragmatics, they mentioned that we all use set “scripts” when doing certain things, like closing a phone conversation. And these can be learned. My “script” for finishing phone conversations is “Kol Tuv” (“Be well”).
Now if I hadn’t heard that video yesterday, I’m not sure I would have noticed Ricki’s sign off: “Kol Tuv”. That’s my girl!
Monday, August 18, 2008
Raining Paint, Fisher Price, and Silver Dishes
One of my daughters-in-law was complaining to me the other day. It seems that an upstairs neighbor’s child had spilled paint from their open porch to hers, below. This is of course an occupational hazard of living in multi-storied child-friendly buildings. Naturally, she went to complain. Eventually the upstairs mom sent her son down to clean up.
Now when my kids were small, I put a plastic mesh over our front window-bars, just to prevent this type of thing. After all, we are on the third floor, and even a small item thrown out to the sidewalk below could be lethal (literally!) if it would hit someone. In addition, a three floors drop usually does not bode well for the toy, either, unless it is raggedy Ann. Even a sturdy Fisher-Price “record player” expired after being tossed down the three floors height of the stairwell. (That incident was followed by our putting up mesh on the stairway rail as well.)
Of course, mesh is only partially effective. I remember the irate countenance of my downstairs neighbor as she protested the spilling of an entire bottle of wine on her newly-cleaned window tressim (blinds). I went to investigate (this was years ago), and found the four-year-old culprit in the act. (Where, where, oh WHERE do they get these ideas from????). Said culprit being too young to wipe up properly, I had to go down and do the cleansing.
Since we removed the mesh in the living room, only one item has been tossed out. One day, inexplicitly, when she was about ten, Ricki tossed out a silver dish (which we had received from Ricki’s married siblings). At least it didn’t hit anyone. The thing is, we didn’t notice its disappearance at once, and when we did, half of the 2-part dish was gone The half that some lucky finder found was useful in its own right, but the part left is not. So I added this to my list of “things to tell the investigator” if they ever want to lower Ricki’s percentage of “Disability payment” to less than the present amount. What else could I do?
Now when my kids were small, I put a plastic mesh over our front window-bars, just to prevent this type of thing. After all, we are on the third floor, and even a small item thrown out to the sidewalk below could be lethal (literally!) if it would hit someone. In addition, a three floors drop usually does not bode well for the toy, either, unless it is raggedy Ann. Even a sturdy Fisher-Price “record player” expired after being tossed down the three floors height of the stairwell. (That incident was followed by our putting up mesh on the stairway rail as well.)
Of course, mesh is only partially effective. I remember the irate countenance of my downstairs neighbor as she protested the spilling of an entire bottle of wine on her newly-cleaned window tressim (blinds). I went to investigate (this was years ago), and found the four-year-old culprit in the act. (Where, where, oh WHERE do they get these ideas from????). Said culprit being too young to wipe up properly, I had to go down and do the cleansing.
Since we removed the mesh in the living room, only one item has been tossed out. One day, inexplicitly, when she was about ten, Ricki tossed out a silver dish (which we had received from Ricki’s married siblings). At least it didn’t hit anyone. The thing is, we didn’t notice its disappearance at once, and when we did, half of the 2-part dish was gone The half that some lucky finder found was useful in its own right, but the part left is not. So I added this to my list of “things to tell the investigator” if they ever want to lower Ricki’s percentage of “Disability payment” to less than the present amount. What else could I do?
Sunday, August 17, 2008
Language and Discrimination
The “Tropic Thunder” debate rages on. I hope that this will be my final post on this.
I was in nursing school when the word "mongoloid" was still used freely for Down's syndrome, and it was used as a slur as well. Eventually they used other phrases. But ANY word which is used for the mentally disabled, whether it is "Mongoloid", "Moron", "imbecile", or "retard", or (now) "full retard" WILL eventually be used to hurt and slander people. Because people feel that the intellectually challenged* are worth less. They cost money. The intellectually disabled* community is discriminated against to the point that most fetuses with Down syndrome are aborted.
Boycotting "Tropic Thunder" will not change that. As long as people hate, there will be improper use of language, taunts, and slurs.
Telling people to not see the movie will not help. Those who are insensitive would not listen anyway. I think that a NEGATIVE approach will not get us very far.
I think that our main thrust has to be at PROMOTING rights and respect for the disabled. We have to support the closure of large institutions where the "clients" are treated as numbers, not people. (If an institution is so big that they don’t have a say in what they eat for breakfast, they have lost their rights to be an INDIDUAL.) We have to encourage and support places that hire the intellectually disabled. We have to protest when someone calls a teen with Down syndrome a nick-name fit for a three year old. We have to encourage our child’s right to make certain choices.
However, I do feel the Ben Stiller owes a debt to the disabled community for three things:
1. marketing specially the sub movie "simple Jack"
2& 3. Two disturbing scenes involving Mcconaughey, where he is obviously unhappy with his intellectually impaired* son. This was too similar to the way the “regular”world views parents of children with Down syndrome. It is definitely reinforcing a stereotype that is as false as can be.
For these three things, I personally would tell Mr. Stiller, that the only way he can hope to make recompense would be by paying for public service announcements favoring those with intellectual disabilities*.
I would like to see (much more than protests) many more videos like the one I put on my blog on Wednesday.
And, in the meantime, we must train our children to have self respect, and to know how to react as safely as possible in the face of discrimination and abuse.
* Can’t we find a SHORTER euphemism than “Intellectually impaired/disabled/challenged”???
[Note: Please see added comments.]
I was in nursing school when the word "mongoloid" was still used freely for Down's syndrome, and it was used as a slur as well. Eventually they used other phrases. But ANY word which is used for the mentally disabled, whether it is "Mongoloid", "Moron", "imbecile", or "retard", or (now) "full retard" WILL eventually be used to hurt and slander people. Because people feel that the intellectually challenged* are worth less. They cost money. The intellectually disabled* community is discriminated against to the point that most fetuses with Down syndrome are aborted.
Boycotting "Tropic Thunder" will not change that. As long as people hate, there will be improper use of language, taunts, and slurs.
Telling people to not see the movie will not help. Those who are insensitive would not listen anyway. I think that a NEGATIVE approach will not get us very far.
I think that our main thrust has to be at PROMOTING rights and respect for the disabled. We have to support the closure of large institutions where the "clients" are treated as numbers, not people. (If an institution is so big that they don’t have a say in what they eat for breakfast, they have lost their rights to be an INDIDUAL.) We have to encourage and support places that hire the intellectually disabled. We have to protest when someone calls a teen with Down syndrome a nick-name fit for a three year old. We have to encourage our child’s right to make certain choices.
However, I do feel the Ben Stiller owes a debt to the disabled community for three things:
1. marketing specially the sub movie "simple Jack"
2& 3. Two disturbing scenes involving Mcconaughey, where he is obviously unhappy with his intellectually impaired* son. This was too similar to the way the “regular”world views parents of children with Down syndrome. It is definitely reinforcing a stereotype that is as false as can be.
For these three things, I personally would tell Mr. Stiller, that the only way he can hope to make recompense would be by paying for public service announcements favoring those with intellectual disabilities*.
I would like to see (much more than protests) many more videos like the one I put on my blog on Wednesday.
And, in the meantime, we must train our children to have self respect, and to know how to react as safely as possible in the face of discrimination and abuse.
* Can’t we find a SHORTER euphemism than “Intellectually impaired/disabled/challenged”???
[Note: Please see added comments.]
Saturday, August 16, 2008
Was it Worth It?
You know, when I registered Ricki for camp, I didn’t realize what I was getting myself into. I understand that I would have to go to city hall to get them to pay for the camp (as “respite” care). I understood that I would need to label and pack her things. My only qualms were:
1. She would miss 10 days wherein we could work on life skills.
2. I was (and am) afraid that she might be treated in a babyish, condescending way by the volunteers, or that they would condone behavior that I don’t.
As it happens, getting ready for camp involved a lot more work than I had imagined. She really didn’t have enough clothing for 10 days, so we bought more. Then those clothes had to be altered to fit, and labeled. So in all, we have lost much more than 10 days of working on life skills. It was a lot of work. And when she returns I dread the amount of laundry I will have to do. (Right now, I’m puzzled every time that I venture out to the laundry room and see that there is not enough laundry to make a machine-load. Ricki generates a LOT of laundry, especially as she is careful to change clothing –usually- when they get smudged up.)
So was it worth it? I think so. Ricki is apparently having a BLAST. She is not calling home in homesickness, either. Friday afternoon when I called, I asked what she was doing. She answered, after a giggle, “Getting a fancy hairdo….” She’s gaining independence, and at the same time getting a real vacation before the tough new school year starts in two weeks. And I suspect she just might get a lot of REAL life skills right there in camp!
1. She would miss 10 days wherein we could work on life skills.
2. I was (and am) afraid that she might be treated in a babyish, condescending way by the volunteers, or that they would condone behavior that I don’t.
As it happens, getting ready for camp involved a lot more work than I had imagined. She really didn’t have enough clothing for 10 days, so we bought more. Then those clothes had to be altered to fit, and labeled. So in all, we have lost much more than 10 days of working on life skills. It was a lot of work. And when she returns I dread the amount of laundry I will have to do. (Right now, I’m puzzled every time that I venture out to the laundry room and see that there is not enough laundry to make a machine-load. Ricki generates a LOT of laundry, especially as she is careful to change clothing –usually- when they get smudged up.)
So was it worth it? I think so. Ricki is apparently having a BLAST. She is not calling home in homesickness, either. Friday afternoon when I called, I asked what she was doing. She answered, after a giggle, “Getting a fancy hairdo….” She’s gaining independence, and at the same time getting a real vacation before the tough new school year starts in two weeks. And I suspect she just might get a lot of REAL life skills right there in camp!
Friday, August 15, 2008
The Collector's Paradise
My husband has discovered the perfect gift for our 16 year-old son: paper money. Now, before you envision Ricki’s brother as filling a piggybank, let me explain. We are talking about bills from all over the world, including some older ones. There’s one from eastern Europe commemorating a solar eclipse, a bill from the Weimar Republic (nearly a hundred years old, etc. Out comes the encyclopedia, the atlas, as he gains a bit of knowledge. Then he puts them away in a display book (one bill per page).
In the picture shown here is a picture from Iraq, and above it, the bill from the Weimar republic.
Another one of my sons collected phone cards for years. [Here in Israel, public phones are operated with a card, not cash. (Saves the phone from being damaged by thieves.) ] These cards come out in a tremendous variety of designs, and are very interesting to collect. They even produce them in a variety of languages, as befits such a widely-varied-populace.
In addition, Israel is a stamp collector’s paradise. People immigrated to Israel from all over the world, and receive letters from “back home”. This means that often, without too much effort, one can get stamps from all over the place. For example, in our 6-apartment-sized building, letters arrive from the USA, England, Brazil, and Mexico on a regular basis, as well as occasionally from other assorted locations. In addition, Israel has a nice collection of stamps itself. And, incidentally, several years ago there were 3 stamps printed for “holidays” which were drawn by a young man with Down syndrome.
Thursday, August 14, 2008
Tropic Thunder- Finally, an Opinion
I have not until now directly addressed "Tropic Thunder", because I do believe that we must be careful with the word "ban" (living in a country that once banned the book Perfidy, it is easy to imagine "bans" being overdone as well.) However, I did have a LOT of problems with the language, and how they apparently never even DREAMED (Dreamworks....) that the intellectually disabled have a voice.
Anyway, me frequent commenter, and fellow blogger, FAB, has written a blog/letter that expresses a view which I share. Please "copy and paste in browser" and go have a look.
http://fab-searchformeaning.blogspot.com/2008/08/stealing-page-from-mr-hingsburger.html
(But don't miss my first blog for today, below.)
Anyway, me frequent commenter, and fellow blogger, FAB, has written a blog/letter that expresses a view which I share. Please "copy and paste in browser" and go have a look.
http://fab-searchformeaning.blogspot.com/2008/08/stealing-page-from-mr-hingsburger.html
(But don't miss my first blog for today, below.)
Ricki in Camp- and the Home Front
Well, according to Ricki’s volunteer, she is having a good time (and behaving herself as well). Yesterday I talked to the volunteer twice, but missed Ricki both times. She didn’t even call to say “good night”, which surprised me. This morning I called and chatted with Ricki for a few moments. She sounded ecstatic (they were going to sing and dance, her favorite pastime. When she answered the phone she said in a real teenager-y voice (real suave) “Hello Mom! What’s up?”
The most amazing thing about Ricki being absent is that my day has become totally flexible. Very few things remain in the category of “Must be done by ___o’clock”. It’s a vacation within a vacation (school break). I can work several hours straight on a project, papers strewn about, and there is no need to stop in the middle, or to prevent Ricki from scattering things. Anyone who knows me knows that I can really get immersed in things, to the point that I reply to someone without really hearing them. Now I don’t even have Ricki around to make me surface from under the “waters” for some air!
The one who is enjoying Ricki’s camp the most is her brother two years her senior. He is the one who often has to help around the house in the wake of her shenanigans….and he doesn’t mind not having to share the computer with her either. (Sharing with me is bad enough!)
And of course I do miss her a bit. But not too badly. That’s because I’m imagining her relishing being a bit more independent.
The most amazing thing about Ricki being absent is that my day has become totally flexible. Very few things remain in the category of “Must be done by ___o’clock”. It’s a vacation within a vacation (school break). I can work several hours straight on a project, papers strewn about, and there is no need to stop in the middle, or to prevent Ricki from scattering things. Anyone who knows me knows that I can really get immersed in things, to the point that I reply to someone without really hearing them. Now I don’t even have Ricki around to make me surface from under the “waters” for some air!
The one who is enjoying Ricki’s camp the most is her brother two years her senior. He is the one who often has to help around the house in the wake of her shenanigans….and he doesn’t mind not having to share the computer with her either. (Sharing with me is bad enough!)
And of course I do miss her a bit. But not too badly. That’s because I’m imagining her relishing being a bit more independent.
Wednesday, August 13, 2008
Hi Ho, Hi Ho, It’s Off to Camp She Goes
Yesterday afternoon I saw Ricki off to camp. She could have been singing (to the tune of Snow White) “Hi Ho, Hi Ho, it’s off to camp I go…”, she was so excited. The entire summer she has been looking forward to this camp, which entails 9 whole days away from home. It’s her first time at an overnight camp. She has been away from the house overnight on occasion, although it was always by a married sibling. We purposely sent her, so that she would/could tolerate overnights out of the house if the need would ever arise. It is also the longest I will be separated from her since she was born. The longest I have ever been away from her was for 4 days of my vacations.
Despite Ricki’s exuberance at going, I had qualms if she would actually hold up when actually at camp. So far she is doing OK. Of course, she had access to her volunteer’s cell phone for a quick “Good Night”, but apparently she did OK last night. (Gee, WE had to "rough it out" in camp without an umbilical cord of a cellphone......)
And here it is quiet, calm…. We’ll see who gets “ homesick” for the other first, she or I.
PS. On the topic of Snow White: Greg Palmer, in his book Adventures in the Mainstream makes a very interesting evaluation of Snow White and the seven dwarves. (I know that sounds weird, but see below, and you’ll se that it is not so strange.) His book is published by Woodbine House, but is already out of print, unfortunately. This book is very worth getting on an inter-library loan, even if you don’t have a child with special needs. It is a very fascinating look at two years in the life of his son, who has Down syndrome. I promise you, it’s interesting.
On Mr. Palmer’s web site ( http://www.gregpalmer.com/ ) I found that he has noted this about the alternate version (of Snow White) that he has authored:
“SNOW WHITE was written in response to extreme dissatisfaction with the Disney version, which reinforces the idea with young people that what you look like is very important - it is, after all, why the Dwarfs save Snow White, why they don’t bury her, why she eventually defeats the Queen; because she is indeed the fairest in the land. And then, after the Dwarfs have taken such care of her, she rides off with the first handsome prince who comes along, even though she has never exchanged a single spoken word with him. There is also the Dopey problem; the Disney character being an obvious developmentally disabled adult who is continually abused physically and verbally by his "loving" brothers. My Snow White makes an intelligent decision about who she loves, and why (it’s the Grumpy equivalent) and the youngest Dwarf is named Peg. She is a developmentally disabled adult as well, but is treated by her siblings with love and respect.”
Despite Ricki’s exuberance at going, I had qualms if she would actually hold up when actually at camp. So far she is doing OK. Of course, she had access to her volunteer’s cell phone for a quick “Good Night”, but apparently she did OK last night. (Gee, WE had to "rough it out" in camp without an umbilical cord of a cellphone......)
And here it is quiet, calm…. We’ll see who gets “ homesick” for the other first, she or I.
PS. On the topic of Snow White: Greg Palmer, in his book Adventures in the Mainstream makes a very interesting evaluation of Snow White and the seven dwarves. (I know that sounds weird, but see below, and you’ll se that it is not so strange.) His book is published by Woodbine House, but is already out of print, unfortunately. This book is very worth getting on an inter-library loan, even if you don’t have a child with special needs. It is a very fascinating look at two years in the life of his son, who has Down syndrome. I promise you, it’s interesting.
On Mr. Palmer’s web site ( http://www.gregpalmer.com/ ) I found that he has noted this about the alternate version (of Snow White) that he has authored:
“SNOW WHITE was written in response to extreme dissatisfaction with the Disney version, which reinforces the idea with young people that what you look like is very important - it is, after all, why the Dwarfs save Snow White, why they don’t bury her, why she eventually defeats the Queen; because she is indeed the fairest in the land. And then, after the Dwarfs have taken such care of her, she rides off with the first handsome prince who comes along, even though she has never exchanged a single spoken word with him. There is also the Dopey problem; the Disney character being an obvious developmentally disabled adult who is continually abused physically and verbally by his "loving" brothers. My Snow White makes an intelligent decision about who she loves, and why (it’s the Grumpy equivalent) and the youngest Dwarf is named Peg. She is a developmentally disabled adult as well, but is treated by her siblings with love and respect.”
PS on the "Stop the R-word" Campaign
While not everyone may agree on a boycott of "tropic thunder" (I wouldn't want to see it anyway....), I think that anyone can agree on the need to stop using the word "retard" outside of its medical usage. The following clip, from Arc of Virginia and the Arc of Northern Virginia, plus Blueberry Shoes Productions is very nice. Enjoy!
Tuesday, August 12, 2008
Choices- the Fried Egg
While Ricki can fry her own egg, sometimes, like the rest of us, she enjoys being catered to. The other day I saw that someone was in the kitchen, and asked them to make Ricki an egg for breakfast. Ricki yelled out from the living room:” I want a scrambled egg.” The person frying the egg said: “I’ll cook you a sunny-side up egg.”
“NO”. Ricki replied, “It will (drip and) mess up my blouse.”
Well, this family member made her a sunny-side up egg, and was puzzled when Ricki got angry and refused to eat the egg. I stepped in, and broke the yolk, mixed it with the white, and cooked it a speck more. This satisfied Ricki. Then I turned to the disconcerted family member.
Didn’t you hear her?
Can’t she chose the type of egg she wants?
I am very glad that Ricki did not accept the abjuration of her rights quietly.
“NO”. Ricki replied, “It will (drip and) mess up my blouse.”
Well, this family member made her a sunny-side up egg, and was puzzled when Ricki got angry and refused to eat the egg. I stepped in, and broke the yolk, mixed it with the white, and cooked it a speck more. This satisfied Ricki. Then I turned to the disconcerted family member.
Didn’t you hear her?
Can’t she chose the type of egg she wants?
I am very glad that Ricki did not accept the abjuration of her rights quietly.
Monday, August 11, 2008
Tropic Thunder
Until now, I have stayed off this topic, not having seen (and not planning to see) the trash that hollywood calls movies today. But I saw the following blog, which I think is well worth reading.:
http://aut.zone38.net/2008/08/06/stumble-in-the-jungle/
http://aut.zone38.net/2008/08/06/stumble-in-the-jungle/
Yesterday’s Fast
Yesterday’s Fast- #1
Yesterday was a fast day (25 hours no food or drink), from sundown Saturday until 8PM Sunday. Here in Israel, one usually doesn’t feel hungry, but rather thirsty. Anyone with any sense stays in an air-conditioned area most of the day.
(Now any of you who are overweight shouldn’t think that this fasting helps with weight control. One usually has a decent-sized meal before the fast, and a hearty one afterwards, so that stretches the stomach. So anyone who diets with frequent, very small meals, and whose stomach has adjusted to that misses out!)
What is interesting is that once you have a “given”, a firm resolution, that you are fasting, the yetzer hora (evil inclination) sort of disappears. Even if you get hungry, you shrug that off and go get busy with something else. The chocolate in the high cabnit (YOU would never bring it home, someone else did you the “favor”) doesn’t “sing” to you. The kids leftovers go to the trash without qualms of “waste”.
So why is it so different when we diet? OK, if one diets successfully for several days, one can also get the feeling that overeating is not a choice or viable option. And the stomach shrinks, and that helps too. But why is it SO much more difficult not to eat on the first days of a diet, than on a fast day? I think there are a few reasons:
1. The commitment is stronger, the sense that “I can not fail” is greater. If I wouldn’t fast, my 16 year old would think I went crazy, and as for dieting… he probably expects me to not succeed. So when dieting, a failure is less damaging to my self esteem.
2. On a fast day, I expect to have less output. On minor (daytime only) fasts, people pretty much work as usual. On a major fast day, no one expects you to accomplish the usual by the afternoon hours. When dieting, we force ourselves to “carry on”, even if we feel terrible.
So I can think now of a few hints to help start a new diet. One is commitment. Make it strong. Non-negotiable. Maybe promise yourself a prize for the end of “one week on” that is big enough that you won’t consider falling back.
Second would be to try and start a diet during a time when you are busy… yet able to give yourself some slack if needed. Don’t start that new diet just before Pesach (Passover), when you can’t dream of resting… but rather during a time that an afternoon nap can be fitted in if you are “weak and ravenous”.
Yesterday’s Fast- #2
I did not expect Ricki to fast on Tishe B’Av (the fast). I decided years ago that our “fasting” energies/brainwashing/ etc will be saved for Yom Kippur, the most serious fast. And besides, Yom Kippur is NOT in the heat of the summer, which makes it easier.
However, I did make it clear that a big girl like her could jolly well not eat at night (especially after a full pre-fast meal). And she was OK with that. In the morning she had a fried egg, but skipped the bread as it got burnt. And then she noticed that everyone else was fasting. (There being no young children in the house.) So she stopped eating. She stopped drinking. For a girl that LOVES eating, this is a major feat, and shows just how important it is for Ricki to feel like everyone else. It’s important enough for her to forgo food and drink. She finally gave up an hour before the end of the fast, but she deserves a real ovation!
Yesterday was a fast day (25 hours no food or drink), from sundown Saturday until 8PM Sunday. Here in Israel, one usually doesn’t feel hungry, but rather thirsty. Anyone with any sense stays in an air-conditioned area most of the day.
(Now any of you who are overweight shouldn’t think that this fasting helps with weight control. One usually has a decent-sized meal before the fast, and a hearty one afterwards, so that stretches the stomach. So anyone who diets with frequent, very small meals, and whose stomach has adjusted to that misses out!)
What is interesting is that once you have a “given”, a firm resolution, that you are fasting, the yetzer hora (evil inclination) sort of disappears. Even if you get hungry, you shrug that off and go get busy with something else. The chocolate in the high cabnit (YOU would never bring it home, someone else did you the “favor”) doesn’t “sing” to you. The kids leftovers go to the trash without qualms of “waste”.
So why is it so different when we diet? OK, if one diets successfully for several days, one can also get the feeling that overeating is not a choice or viable option. And the stomach shrinks, and that helps too. But why is it SO much more difficult not to eat on the first days of a diet, than on a fast day? I think there are a few reasons:
1. The commitment is stronger, the sense that “I can not fail” is greater. If I wouldn’t fast, my 16 year old would think I went crazy, and as for dieting… he probably expects me to not succeed. So when dieting, a failure is less damaging to my self esteem.
2. On a fast day, I expect to have less output. On minor (daytime only) fasts, people pretty much work as usual. On a major fast day, no one expects you to accomplish the usual by the afternoon hours. When dieting, we force ourselves to “carry on”, even if we feel terrible.
So I can think now of a few hints to help start a new diet. One is commitment. Make it strong. Non-negotiable. Maybe promise yourself a prize for the end of “one week on” that is big enough that you won’t consider falling back.
Second would be to try and start a diet during a time when you are busy… yet able to give yourself some slack if needed. Don’t start that new diet just before Pesach (Passover), when you can’t dream of resting… but rather during a time that an afternoon nap can be fitted in if you are “weak and ravenous”.
Yesterday’s Fast- #2
I did not expect Ricki to fast on Tishe B’Av (the fast). I decided years ago that our “fasting” energies/brainwashing/ etc will be saved for Yom Kippur, the most serious fast. And besides, Yom Kippur is NOT in the heat of the summer, which makes it easier.
However, I did make it clear that a big girl like her could jolly well not eat at night (especially after a full pre-fast meal). And she was OK with that. In the morning she had a fried egg, but skipped the bread as it got burnt. And then she noticed that everyone else was fasting. (There being no young children in the house.) So she stopped eating. She stopped drinking. For a girl that LOVES eating, this is a major feat, and shows just how important it is for Ricki to feel like everyone else. It’s important enough for her to forgo food and drink. She finally gave up an hour before the end of the fast, but she deserves a real ovation!
Sunday, August 10, 2008
Destroying is Easy
Today is the day we mark the destruction of the Temple in Jerusalem. It is a day of mourning and fasting. (If you’re asking why I’m blogging, I wrote this last week….)
You know, it is so easy to destroy things.
-You can ruin a day of school if you yell at your child as he goes out the door.
-You can devastate someone’s self-confidence with a smirk.
-You can demolish (as someone did here recently) a private lesson by interrupting with something not related (in our case, an animal that scared Ricki).
-You can obliterate relationships by not giving people your time (like if you are on the computer too much).
-You can wreck relationships by being over-demanding and critical.
-You can crush people by insisting that they be carbon copies of you.
-You can shatter a child by showing him through actions that you don’t care.
-You can extinguish some of your inner purity by too much self-centeredness.
Building takes longer. But it’s worth it. Each stone in a wall of positive action has reverberations. My mother once said: “Nothing worthwhile is accomplished without work.” How true! I hope I can apply it to my life.
You know, it is so easy to destroy things.
-You can ruin a day of school if you yell at your child as he goes out the door.
-You can devastate someone’s self-confidence with a smirk.
-You can demolish (as someone did here recently) a private lesson by interrupting with something not related (in our case, an animal that scared Ricki).
-You can obliterate relationships by not giving people your time (like if you are on the computer too much).
-You can wreck relationships by being over-demanding and critical.
-You can crush people by insisting that they be carbon copies of you.
-You can shatter a child by showing him through actions that you don’t care.
-You can extinguish some of your inner purity by too much self-centeredness.
Building takes longer. But it’s worth it. Each stone in a wall of positive action has reverberations. My mother once said: “Nothing worthwhile is accomplished without work.” How true! I hope I can apply it to my life.
Saturday, August 9, 2008
PS on the Previous Post
Ricki wasn't rejecting anyone, she just didn't understand it!
The rejection I was talking about is that I have heard about on occasion, of special ed teens/adults with NO contact with special ed kids, saying they want to marry someone "normal" and the like.
Sometimes it is hard for the higher-functioning kids to find their niche. Here in Israel, the authorities discourage high-functioning kids with DS from mixing acedemically with kids with learning disabilities (even if the child with DS is doing better scholastically). And in order for a class/club/ etc. to have enough kids to get funding or manage otherwise financially, the "retarded" group will have a range of abilities. So many times the higher functioning kids lose out socially, feeling "too good" for where they are.
For example, high school inclusion is unheard of here. We were from the ground-breakers for grade school inclusion. In one year, when Ricky will finish eighth grade, I may be forced to put her in special ed, and I know the girls in that class. She is way above their level.
However, at club, Ricki bonded to the girls despite their lower level, as they were having fun together. And going to the club has helped Ricki come to terms with the fact that she yes has something called Down syndrome, and that it is not necessarily a bad thing.
The rejection I was talking about is that I have heard about on occasion, of special ed teens/adults with NO contact with special ed kids, saying they want to marry someone "normal" and the like.
Sometimes it is hard for the higher-functioning kids to find their niche. Here in Israel, the authorities discourage high-functioning kids with DS from mixing acedemically with kids with learning disabilities (even if the child with DS is doing better scholastically). And in order for a class/club/ etc. to have enough kids to get funding or manage otherwise financially, the "retarded" group will have a range of abilities. So many times the higher functioning kids lose out socially, feeling "too good" for where they are.
For example, high school inclusion is unheard of here. We were from the ground-breakers for grade school inclusion. In one year, when Ricky will finish eighth grade, I may be forced to put her in special ed, and I know the girls in that class. She is way above their level.
However, at club, Ricki bonded to the girls despite their lower level, as they were having fun together. And going to the club has helped Ricki come to terms with the fact that she yes has something called Down syndrome, and that it is not necessarily a bad thing.
Friday, August 8, 2008
Teaching Compassion
One of the reasons I have Ricki participate in a special-needs gym club each week, is so that when she will eventually go to a “special” classroom (at a yet-undetermined time, but probably in high school), she shouldn’t say “Hey, I’m ‘normal’ and this is not for me!”. The other reason is so that she should have contact with others with Down syndrome, and see them as PEOPLE. I think that one of the saddest things is an adult with Down syndrome who is prejudiced against others with disabilities.
So now that it is summer vacation, the club has a month’s break and Ricki nearly every evening tries to call at least a few on the teens from the club. Yesterday she called her best friend from the club. This girl has had excellent teachers all her life, and is very adept. But when she spoke to Riki last night, she started stuttering.
Ricki didn’t realize what was going on, and was getting a bit angry. “’What what what’ won’t help me!’ she complained to her friend. So after she got off the phone, I had to explain to her what stuttering is, and that she needs to accept other’s limitation. Will this be a one-time lesson? NO. But- she has to learn it, just as everybody does.
So now that it is summer vacation, the club has a month’s break and Ricki nearly every evening tries to call at least a few on the teens from the club. Yesterday she called her best friend from the club. This girl has had excellent teachers all her life, and is very adept. But when she spoke to Riki last night, she started stuttering.
Ricki didn’t realize what was going on, and was getting a bit angry. “’What what what’ won’t help me!’ she complained to her friend. So after she got off the phone, I had to explain to her what stuttering is, and that she needs to accept other’s limitation. Will this be a one-time lesson? NO. But- she has to learn it, just as everybody does.
Thursday, August 7, 2008
Just Too D#*mn Smart
Yesterday Ricki offered to go to the grocery store. She often does, and the cashier there tells me that she behaves better than when I am with her. So she wrote a list, and was prepared to go.
-“Let me see the list, Ricki.”
She balked. That set my radar on full power, and finally I saw the list. In addition to some things we needed, and some which we didn’t need , Ricki had written:
1 snack
3 borekas (a potato-filled puff pastry)
Well, well… I was not surprised. She LOVES borekas. So I explained that going to the grocery does NOT include buying sweets, and not buying things that she knows I don’t want. She appeared sorry, and wrote a new list, minus the “extras”.
As she exited the house, I spied the pen in her hand. When she wants something, this girl can be SO smart, her IQ must be 80 at least - at those moments. Wish she’d channel that brainpower over to her math skills……..
A few minutes later, I phoned the grocery, and she had YES purchased borekas. Guess who won’t be going to the grocery for a while……..
-“Let me see the list, Ricki.”
She balked. That set my radar on full power, and finally I saw the list. In addition to some things we needed, and some which we didn’t need , Ricki had written:
1 snack
3 borekas (a potato-filled puff pastry)
Well, well… I was not surprised. She LOVES borekas. So I explained that going to the grocery does NOT include buying sweets, and not buying things that she knows I don’t want. She appeared sorry, and wrote a new list, minus the “extras”.
As she exited the house, I spied the pen in her hand. When she wants something, this girl can be SO smart, her IQ must be 80 at least - at those moments. Wish she’d channel that brainpower over to her math skills……..
A few minutes later, I phoned the grocery, and she had YES purchased borekas. Guess who won’t be going to the grocery for a while……..
Wednesday, August 6, 2008
Learning Versus Tests- the Stapler
I remember several years ago reading in the book Teaching Children with Down Syndrome to Read (by Oelwein, Woodbine House) the difference between learning and tests.. She was teaching a child to read, and an observer “caught” on that the child was looking at the picture (ie., he did not yet know the word), and said “He’s cheating!” Ms. Oelwein replied, “I’m teaching.”
[ A side note here. This book has an excellent section on HOW to teach children with Down syndrome. Another book, with an even more extensive section on “how to teach” is Steps to Independence (Brookes Publishing), and I heartily recommend both books.]
Sometimes, as we endeavor to teach our children, we can end up “testing” them before they are ready. If they are learning, props can be consulted when needed.
Which brings us to Ricki. Last night I saw that Ricki was trying to fill a stapler with (what else?)staples. I immediately realized that this was an opportunity to teach her a very useful life skill. I told her that I could see that she was having problems, and that I could show her how to do it. She got a bit defensive (I’ll do it on my own), but was not succeeding with the stapler.
“Ricki, its OK that you don’t know how to do it. I never taught you, and you just need to LEARN how.” Luckily there were two staplers on the table. “I’ll show you with this one, and then YOU can fill the second one.” So I showed her, and then she very successfully did the second stapler. However, as she was filling it, she turned her back so that I shouldn’t see.
“Ricki, there is no reason why you should turn your back. This is not a test. You are learning something NEW, and if I see, I can help be sure you are able to learn this correctly… I am not testing you.”
[ A side note here. This book has an excellent section on HOW to teach children with Down syndrome. Another book, with an even more extensive section on “how to teach” is Steps to Independence (Brookes Publishing), and I heartily recommend both books.]
Sometimes, as we endeavor to teach our children, we can end up “testing” them before they are ready. If they are learning, props can be consulted when needed.
Which brings us to Ricki. Last night I saw that Ricki was trying to fill a stapler with (what else?)staples. I immediately realized that this was an opportunity to teach her a very useful life skill. I told her that I could see that she was having problems, and that I could show her how to do it. She got a bit defensive (I’ll do it on my own), but was not succeeding with the stapler.
“Ricki, its OK that you don’t know how to do it. I never taught you, and you just need to LEARN how.” Luckily there were two staplers on the table. “I’ll show you with this one, and then YOU can fill the second one.” So I showed her, and then she very successfully did the second stapler. However, as she was filling it, she turned her back so that I shouldn’t see.
“Ricki, there is no reason why you should turn your back. This is not a test. You are learning something NEW, and if I see, I can help be sure you are able to learn this correctly… I am not testing you.”
Tuesday, August 5, 2008
Yes, I’ve Seen Her in the Grocery Store
Yesterday I was at a meeting attended by, amongst others, some people I rarely see: those who work in special ed. My attitude towards this group is rather two-sided:
-I admire them for doing a hard job at minimal pay, and understand that they care…
-Yet I am equally frustrated by their (often) lack of knowledge in the new ways of teaching children with Down syndrome, and their attitude of not expecting too much.
After the meeting, one of the younger teachers talked a bit to me. She asked if we use grocery store “X”, and I replied affirmatively.
-“You know, I’ve seen your daughter there. She’s really quite nice.” She said this without a trace of patronizing; it was a pure well-meant compliment.
I answered with a wry laugh: “Yeah, when she wants to be…”
She also laughed, and added, “Yes, just as with all our children….”
Younger staff is slowly coming into the schools. Some have had a bit of exposure to new ideas. In addition, parents are beginning to insist that special ed school staffs see good things being accomplished in other schools around the country. Things are still VERY far from perfect in the schools in our city. But I see a stronger willingness to be open to new ideas. I am glad for that.
-I admire them for doing a hard job at minimal pay, and understand that they care…
-Yet I am equally frustrated by their (often) lack of knowledge in the new ways of teaching children with Down syndrome, and their attitude of not expecting too much.
After the meeting, one of the younger teachers talked a bit to me. She asked if we use grocery store “X”, and I replied affirmatively.
-“You know, I’ve seen your daughter there. She’s really quite nice.” She said this without a trace of patronizing; it was a pure well-meant compliment.
I answered with a wry laugh: “Yeah, when she wants to be…”
She also laughed, and added, “Yes, just as with all our children….”
Younger staff is slowly coming into the schools. Some have had a bit of exposure to new ideas. In addition, parents are beginning to insist that special ed school staffs see good things being accomplished in other schools around the country. Things are still VERY far from perfect in the schools in our city. But I see a stronger willingness to be open to new ideas. I am glad for that.
Monday, August 4, 2008
Pollyanna and PBS
Its so easy to be negative. You see a negative behavior, and the first thought can be: “O.K., How do I punish her so she’ll stop?” But it doesn’t work. Punishment breeds anger, and that doesn’t get you very far. And, in my experience, children with Down syndrome lap up negative attention like a cat coming out of the burning sun.
I happened to watch the movie “Pollyanna” with my son the other day. Funny as it sounds, I had never seen the film. And it gives a clear message: The POWER of positive reinforcement.
PBS is short for Positive Behavior Support. In this system, the focus is not on punishment, but on supporting and encouraging good behavior. Experts on Down syndrome have told me how important it is to center on promoting what we want, and not punishing the bad.
So the first thing that should come to mind when a kid misbehaves should be:
-“What do I want?”
-“How do we get there?”
So when I saw Ricki getting dressed for the umpteenth time in front of the living room window yesterday, it suddenly hit me: Yelling at her that this is a public place is not working. She KNOWS that. For some reason she wants to get dressed there. So now I have to analyze the situation, figure out what is going on, and make a plan. Because negative attention just DOESN’T do it.
I happened to watch the movie “Pollyanna” with my son the other day. Funny as it sounds, I had never seen the film. And it gives a clear message: The POWER of positive reinforcement.
PBS is short for Positive Behavior Support. In this system, the focus is not on punishment, but on supporting and encouraging good behavior. Experts on Down syndrome have told me how important it is to center on promoting what we want, and not punishing the bad.
So the first thing that should come to mind when a kid misbehaves should be:
-“What do I want?”
-“How do we get there?”
So when I saw Ricki getting dressed for the umpteenth time in front of the living room window yesterday, it suddenly hit me: Yelling at her that this is a public place is not working. She KNOWS that. For some reason she wants to get dressed there. So now I have to analyze the situation, figure out what is going on, and make a plan. Because negative attention just DOESN’T do it.
Sunday, August 3, 2008
Home from the Hospital (not us) or After the Wedding
I want to mention a point that I noted (in passing) on someone else’s blog today, as I think that it is an important point for families to know, especially those whose children are sick often.
Often when people have a child in the hospital, they think that at least while sitting there, they can get some knitting done, etc. However, this is often not the case. The illness, and hospitalization cause enough nervous energy to make doing a steady task difficult. Usually parents can accept that without too much problem. However, when the child is finally discharged, they are likely to think that now that they are going home (after “lounging” around in the hospital for X amount of time), they can tackle the world. Finally you can clean up the mess (OK., the looks-like-a hurricane-hit-the-house-disaster-area). Now you can cook decent meals. You can do the laundry.
That's why I tell parents coming home from the hospital not to think "Well, now that I am finally home, I can get something done..." It just doesn't work. You need a few days or weeks just to regroup and unwind. (Besides, you’ll have to field calls of well-wishers as well.) Sometimes your body and spirit need to regroup from the stress and excitement.
P.S. This is also true of post-simcha days (after a wedding, or other celebration). So lets hope we will be “wiped out” from good news, not bad!
Often when people have a child in the hospital, they think that at least while sitting there, they can get some knitting done, etc. However, this is often not the case. The illness, and hospitalization cause enough nervous energy to make doing a steady task difficult. Usually parents can accept that without too much problem. However, when the child is finally discharged, they are likely to think that now that they are going home (after “lounging” around in the hospital for X amount of time), they can tackle the world. Finally you can clean up the mess (OK., the looks-like-a hurricane-hit-the-house-disaster-area). Now you can cook decent meals. You can do the laundry.
That's why I tell parents coming home from the hospital not to think "Well, now that I am finally home, I can get something done..." It just doesn't work. You need a few days or weeks just to regroup and unwind. (Besides, you’ll have to field calls of well-wishers as well.) Sometimes your body and spirit need to regroup from the stress and excitement.
P.S. This is also true of post-simcha days (after a wedding, or other celebration). So lets hope we will be “wiped out” from good news, not bad!
Cloth store and Vegetable Store, and the Phone: Independence!
As I mentioned on Monday, I was with Ricki in the cloth store, buying cloth to make a dress for her sister’s wedding. The saleslady showed us several samples. Her first selection was nice looking, but I was afraid that, being light pink, would not look good on Ricki’s large figure. So I asked for a second set of fabrics. The second set did not suit my fancy, but I did not need to protest. Ricki piped right up; it did not suit her at all. The third idea suited both of us, and that became our purchase. The sales lady was so impressed by her maturity, her independence.
The next day we had to go buy some vegetables. Ricki did virtually all of the work, and the only thing I could find fault with was when she put the tomatoes under heavier items. I often send her to this store with a small list. I suspect that soon she’ll be ready to do the weekly vegetable buy.
Today, on Shabbas (there is no traffic in our town on Shabbas, Saturday), Ricki walked over on her own to a friend’s house, and as I told my husband, “why not?”. Later in the day I refused to let her go a second time, since the friend was not in, and I was afraid that Ricki would make a pest of herself to the friend’s older sister (who had entertained her during the first visit).
Meanwhile, I have received several phone calls over the last few days. Ricki has made various phone calls, often several at one sitting to someone who is out. She gets the answering machine, and apparently doesn’t realize that they are not home. The nicest story came from Ricki’s sister-in-law, M. who told me that Ricki had requested that they come for shabbos (Saturday). M. told her that she would talk it over with Ricki’s brother. At the end of the 5 minute conversation, Ricki reminded her to ask her husband, and the next day called to hear the results!
It is obvious that Ricki wants more independence, and I guess I will have to teach her about putting the squishable fruit on top, and about answering machines. If she wants that independence, it’s a sign that we have to go for it!
The next day we had to go buy some vegetables. Ricki did virtually all of the work, and the only thing I could find fault with was when she put the tomatoes under heavier items. I often send her to this store with a small list. I suspect that soon she’ll be ready to do the weekly vegetable buy.
Today, on Shabbas (there is no traffic in our town on Shabbas, Saturday), Ricki walked over on her own to a friend’s house, and as I told my husband, “why not?”. Later in the day I refused to let her go a second time, since the friend was not in, and I was afraid that Ricki would make a pest of herself to the friend’s older sister (who had entertained her during the first visit).
Meanwhile, I have received several phone calls over the last few days. Ricki has made various phone calls, often several at one sitting to someone who is out. She gets the answering machine, and apparently doesn’t realize that they are not home. The nicest story came from Ricki’s sister-in-law, M. who told me that Ricki had requested that they come for shabbos (Saturday). M. told her that she would talk it over with Ricki’s brother. At the end of the 5 minute conversation, Ricki reminded her to ask her husband, and the next day called to hear the results!
It is obvious that Ricki wants more independence, and I guess I will have to teach her about putting the squishable fruit on top, and about answering machines. If she wants that independence, it’s a sign that we have to go for it!
Friday, August 1, 2008
The “Club”
One day about a week or two ago, I was out with Ricki, and we stopped to look at some books. I decided to purchase on book, and asked the storekeeper for the price. He noticed Ricki’s hearing aid, and asked if she had a cochlear implant. I said “No, it’s a regular hearing aid.”, and he looked disappointed. It turns out that he had a child slated to get a cochlear implant in the near future.
One of the nice things about having a child with a disability is the “club”. Parents have a tendency to give each other that “knowing nod” when they pass in the street, along with a smile. A few words, a smile, exchanged while in line at the dentist or physiotherapist. Sometimes even a discount at a store. The best is the way they treat your child…..like a person. Today I have to send Ricki with her brother to pick up her new eyeglasses. I can confidently send them alone, not only because my son knows how to manage, but because the store owner himself has a young adult son with Down syndrome. He knows just how to get her to cooperate, and never treats her condescendingly.
One of the nice things about having a child with a disability is the “club”. Parents have a tendency to give each other that “knowing nod” when they pass in the street, along with a smile. A few words, a smile, exchanged while in line at the dentist or physiotherapist. Sometimes even a discount at a store. The best is the way they treat your child…..like a person. Today I have to send Ricki with her brother to pick up her new eyeglasses. I can confidently send them alone, not only because my son knows how to manage, but because the store owner himself has a young adult son with Down syndrome. He knows just how to get her to cooperate, and never treats her condescendingly.
Thursday, July 31, 2008
I Hate Shopping (With Ricki)
Yesterday I had to do some shopping with Ricki. In the morning we had to buy school supplies, and in the afternoon clothing. Normally I wouldn’t buy clothing at this point of the summer, but I received a letter from Ricki’s overnight camp, and they expect us to send 10 days worth of clothing, plus some reserve. Well, we are no where near that amount of clothing, so I went to buy some.
I don’t know why, but Ricki is inevitably TERRIBLE when we go shopping, especially for clothing. In the morning she was ALMOST “passable” on behavior (kept trying to play with the cash register in the bookstore, took a bit of stuff before asking, sat on the floor only once). In the afternoon she was pretty bad. She kept sitting on the floor, running away, etc. At least this time I was VERY firm with consequences (walked out of two storse, didn’t buy her a drink).
This morning we have a bit more of shopping to do. Ricki woke up and asked if we were going shopping. I answered affirmatively, and stressed that I expect her to act like a big girl. Before we go I plan to spell out clearly my expectations, and the positive/negative consequences of proper decorum or lack thereof. Wish me luck! (I will try and post an update).
* * * * *
Later in the day:
Ricki was better today. Mind you, that did not stop her from moaning as if in transition phase of labor a desperate “I’M HUNGRY……” when passing the popcorn stand and creating a real scene. [The popcorn man, on hearing my repeated refusals to buy her any snacks, immediately offered to give her some. He actually took a bag and started filling it… ( I said “Mister, do YOU give your kids EVERYTHING they ask for?????”). He really only desisted because I walked away, and Ricki followed. Some people just don’t get it.]
I don’t know why, but Ricki is inevitably TERRIBLE when we go shopping, especially for clothing. In the morning she was ALMOST “passable” on behavior (kept trying to play with the cash register in the bookstore, took a bit of stuff before asking, sat on the floor only once). In the afternoon she was pretty bad. She kept sitting on the floor, running away, etc. At least this time I was VERY firm with consequences (walked out of two storse, didn’t buy her a drink).
This morning we have a bit more of shopping to do. Ricki woke up and asked if we were going shopping. I answered affirmatively, and stressed that I expect her to act like a big girl. Before we go I plan to spell out clearly my expectations, and the positive/negative consequences of proper decorum or lack thereof. Wish me luck! (I will try and post an update).
* * * * *
Later in the day:
Ricki was better today. Mind you, that did not stop her from moaning as if in transition phase of labor a desperate “I’M HUNGRY……” when passing the popcorn stand and creating a real scene. [The popcorn man, on hearing my repeated refusals to buy her any snacks, immediately offered to give her some. He actually took a bag and started filling it… ( I said “Mister, do YOU give your kids EVERYTHING they ask for?????”). He really only desisted because I walked away, and Ricki followed. Some people just don’t get it.]
Wednesday, July 30, 2008
Dr. Jekyll and Mr. Hyde
Sometimes I feel that Ricki is like Dr. Jekyll and Mr. Hyde—or like the little girl from Mother Goose with the “curl in the middle of her forehead”. Because when she is good… she is very good… and when she is bad… she is horrid.
Yesterday at swimming she was good most of the time. However, near the end of the lesson she spat at the teacher (who, thank G-d, gave Ricki a piece of her mind). Then she acted the same way to a teen there. Of course there were “consequences”, and she was contrite, but I was very adamant that I was not forgiving her as this is an activity that has often been repeated. Next week we have to skip the lesson for technical/religious reasons. But she doesn’t know that, and she will be informed next week that swimming was cancelled because last week she spit.
Then, later in the day, I had no choice but to take her with me to a meeting in Jerusalem. I bought her a new book to read there, to keep her occupied. However, the meeting took MUCH longer than I had anticipated. And Ricki sat there quietly for two and a half hours!!!!! So she was “very, very good”.
Yesterday at swimming she was good most of the time. However, near the end of the lesson she spat at the teacher (who, thank G-d, gave Ricki a piece of her mind). Then she acted the same way to a teen there. Of course there were “consequences”, and she was contrite, but I was very adamant that I was not forgiving her as this is an activity that has often been repeated. Next week we have to skip the lesson for technical/religious reasons. But she doesn’t know that, and she will be informed next week that swimming was cancelled because last week she spit.
Then, later in the day, I had no choice but to take her with me to a meeting in Jerusalem. I bought her a new book to read there, to keep her occupied. However, the meeting took MUCH longer than I had anticipated. And Ricki sat there quietly for two and a half hours!!!!! So she was “very, very good”.
Tuesday, July 29, 2008
Man Plans…Mom Plans
Before this summer vacation, I had SO many plans of things I would do with Ricki. I knew I couldn’t plan too much… after all, about half of the school break was slotted for day/overnight camps. But in the other four weeks, we would cook, sew, fold laundry together, study a bit, and have tons of fun. But I’m a week and a half into one of those free periods, and have little to show… we’ve done almost nothing. Part of this is because we have been doing some shopping for the upcoming wedding. But after a lot of thought, I have to admit that the main culprit is the computer. I LOVE reading and the computer provides such interesting stuff!
But long term, what will I get from most of what I read on the net? Not that much. So I’ve decided that I have to really limit how much I read and spend time on the computer, and spend more time with the family. Problem is, I’ve made that resolution before, but only have done partial changes.
So if you read this blog, I love comments…and appreciate knowing that the blog is read. But probably will not be able to regularly reciprocate and read the blogs of others, except a few. I just can’t. Family and real people MUST come first.
But long term, what will I get from most of what I read on the net? Not that much. So I’ve decided that I have to really limit how much I read and spend time on the computer, and spend more time with the family. Problem is, I’ve made that resolution before, but only have done partial changes.
So if you read this blog, I love comments…and appreciate knowing that the blog is read. But probably will not be able to regularly reciprocate and read the blogs of others, except a few. I just can’t. Family and real people MUST come first.
Monday, July 28, 2008
The Good, the Bad, and a Decision to Have Compassion
Yesterday evening I went with Ricki to the fabric store. We bought cloth to sew her a dress for her sister’s wedding (in three months). We bought cloth for something very similar to what she wore for the last family wedding 4 years ago: A black top, a pink skirt (last time was red), flared, with black lace over the skirt. [ See the picture to the right, which shows the dress she wore four years ago.] As the lady showed us various samples, Ricki was very emphatic about what she liked… and didn’t like. The saleslady was impressed, and I was pleased. (I was extra pleased because it just so happened that she agreed to what I also wanted, though the choice was hers. I did limit the choice to things I felt were reasonable.) Sounds like such a big girl, no?
So then, why in the middle of the night did she make in her pants? Sometimes she can be so adult, and sometimes so small!
I was awakened to my husband’s growl that Ricki had been in the bath for an hour, and that if I wanted to save the water level of the Kinneret (Sea of Galilee), I better check what was going on. I demanded entrance to the washroom, only to discover Ricki getting dressed. However, the tub was completely blocked up from fecal matter. I decided at that point that she needed some compassion. She had made a terrific mess, but… she had also tried so hard not to wake anyone up. She had managed to exit that filthy tub 95% clean. For the next half hour, I unstopped (with a real plumber’s metal coil) the tub, and flushed out the drain pipes with a strong flow of fresh water. (Sorry about the Kinneret, but I didn’t want any gunk to stay in the pipes under the bathroom floor, to add an “aroma” to the house.) Then I scoured the tub. All this took about 35 minutes. Then I had Ricki rewash herself, get dressed, and go to bed. (She was more than willing to get up, stay up, and read a book, but I did growl at that point: “Ricki, it is the MIDDLE of the night…..”)
I suspect that her intestines can not take the summer fruits…. Or that she ate several tomatoes. (Tomatoes, being first cousins of catsup, are her favorite “fruit”.) So now she wants to sign off fruits…. But then she’ll go back to tons of bread. Seems I can’t win for losing….
PS. It would be real tempting to post just the first half, about the cloth store, and leave out the second part, which might be SO discouraging to new parents. But I want this blog to be a true picture of what life with a teen with Down syndrome can be like. And, having spoken to many parents with teens, the consensus is that even though they are usually very good at managing their toileting needs, “accidents” do happen. It could be that part of this is due to the fact that their bowl may not be 100% OK.
Sunday, July 27, 2008
“YES? NO??” and the Case for Education
Now I am going back to over a week ago, when I was away at a Down syndrome conference. I felt the vibration of my silent cell-phone and quickly fetched it from my briefcase. “Hello?” Ricki’s evening babysitter was on the line.
-We think that maybe Ricki get her period.
-What do you mean, “think”? (Oh no! Just when I’m away she has to get it the first time!)
-Well, her dress had some mud, and the teen who took her to the park said that she had a stomach ache, so maybe…..
Well, I’m not even going to tell you if she had gotten one or not. That’s an invasion of her privacy, and none of your business. However, the question of “Yes or No?” was not answered for several hours, as Ricki was very discreet about changing her clothes, bathing, etc. But the fact that I had prepared her in advance, and that she knew what the word meant, calmed me considerably when I realized that she might have to face this with just the neighbor’s help, since I was several hours away. (Plus she had no sisters around to fill in for me.)
So imagine my horror when a mother announced to the group of women at the conference how she had prevented her daughter from speaking inappropriately by not teaching her… and that she had had the luck that her daughter was at home when that first menstruation had arrived.
I had felt the need to protest. Education is a must. And so is education in modesty. And that education does not begin at age 11 or 12.
Modesty in dress/ talk,
private/public places,
private/public actions, etc
must be taught slowly for several years. THEN you have a chance that it will be ingrained enough to be effective when the need for it arrives.
-We think that maybe Ricki get her period.
-What do you mean, “think”? (Oh no! Just when I’m away she has to get it the first time!)
-Well, her dress had some mud, and the teen who took her to the park said that she had a stomach ache, so maybe…..
Well, I’m not even going to tell you if she had gotten one or not. That’s an invasion of her privacy, and none of your business. However, the question of “Yes or No?” was not answered for several hours, as Ricki was very discreet about changing her clothes, bathing, etc. But the fact that I had prepared her in advance, and that she knew what the word meant, calmed me considerably when I realized that she might have to face this with just the neighbor’s help, since I was several hours away. (Plus she had no sisters around to fill in for me.)
So imagine my horror when a mother announced to the group of women at the conference how she had prevented her daughter from speaking inappropriately by not teaching her… and that she had had the luck that her daughter was at home when that first menstruation had arrived.
I had felt the need to protest. Education is a must. And so is education in modesty. And that education does not begin at age 11 or 12.
Modesty in dress/ talk,
private/public places,
private/public actions, etc
must be taught slowly for several years. THEN you have a chance that it will be ingrained enough to be effective when the need for it arrives.
Friday, July 25, 2008
Three Short Pieces for Friday and Saturday
“Cheer of Down syndrome" campaign
Ricki can occasionally be open and talkative when meeting new people on the bus (buses here are social, see my post “Buses in Israel from Tuesday). Other times she may stick out her tongue! (Actually, she no longer sticks out her tongue--we've been working on that!)
I guess the difference is the "Vibes" she sees. The problem is, little kids, not realizing WHY she looks different, have a tendency to stare. Then she stares back, scowls, and growls, and scares them completely. So much for our "spreading the Cheer of Down syndrome" campaign!
She also likes to coo at babies on the bus. Some mothers handle this very well, and others don’t (especially if two minutes ago she scowled at their toddler!).
In Defense of Chareidi Education
In the latest group of psychometric exams in Israel, the ultra –Orthodox (chareidi) students taking an ultra-orthodox course to prepare them properly did better than the national average. This was despite learning English from scratch.
These figures are a support for the ultra-Orthodox approach of teaching mainly religious subjects through high school, along with the 3 R’s and a bit of science,. It has been shown that those students who do want to continue on to learn a profession are able to make up the lost material very quickly, because they have learned to STUDY in yeshiva.
While there are, in my mind, things that can be improved in our school system, these figures should be a relief for grandparents who are afraid that their chareidi grandchildren will not have the ability to study and learn a profession later in life. And the advantages of chareidi education: a very low rate of drug use, no violence, no teen pregnancies, and respect for elders---- are implicit and attainable.
Calling All Researchers!-The Catsup Connection
Anyone want to do an interesting piece of research on Down syndrome? If you do, so try and discover the link between the 21st chromosome and catsup. I’m not kidding. I am positive that there must be a connection.
I have spoken to several parents, and have yet to hear of a child with DS who doesn’t love catsup. In fact, it is high and noticed very often on the list of “favorite foods”. Ricki doesn’t particularly like sweets—but put catsup on a food and she’ll eat about anything.
Now, I can hear you countering: “But ALL my kids like catsup.” Yes, I know. But they also like peanut butter, white cream cheese, tuna and salmon spread. Ricki (and many other children with Down syndrome) want ONLY catsup on their bread. Believe me, I keep trying to indoctrinate her taste buds with low-fat cream cheese….. but it’s:
“Catsup, catsup, we scream for catsup!.”
Ricki can occasionally be open and talkative when meeting new people on the bus (buses here are social, see my post “Buses in Israel from Tuesday). Other times she may stick out her tongue! (Actually, she no longer sticks out her tongue--we've been working on that!)
I guess the difference is the "Vibes" she sees. The problem is, little kids, not realizing WHY she looks different, have a tendency to stare. Then she stares back, scowls, and growls, and scares them completely. So much for our "spreading the Cheer of Down syndrome" campaign!
She also likes to coo at babies on the bus. Some mothers handle this very well, and others don’t (especially if two minutes ago she scowled at their toddler!).
In Defense of Chareidi Education
In the latest group of psychometric exams in Israel, the ultra –Orthodox (chareidi) students taking an ultra-orthodox course to prepare them properly did better than the national average. This was despite learning English from scratch.
These figures are a support for the ultra-Orthodox approach of teaching mainly religious subjects through high school, along with the 3 R’s and a bit of science,. It has been shown that those students who do want to continue on to learn a profession are able to make up the lost material very quickly, because they have learned to STUDY in yeshiva.
While there are, in my mind, things that can be improved in our school system, these figures should be a relief for grandparents who are afraid that their chareidi grandchildren will not have the ability to study and learn a profession later in life. And the advantages of chareidi education: a very low rate of drug use, no violence, no teen pregnancies, and respect for elders---- are implicit and attainable.
Calling All Researchers!-The Catsup Connection
Anyone want to do an interesting piece of research on Down syndrome? If you do, so try and discover the link between the 21st chromosome and catsup. I’m not kidding. I am positive that there must be a connection.
I have spoken to several parents, and have yet to hear of a child with DS who doesn’t love catsup. In fact, it is high and noticed very often on the list of “favorite foods”. Ricki doesn’t particularly like sweets—but put catsup on a food and she’ll eat about anything.
Now, I can hear you countering: “But ALL my kids like catsup.” Yes, I know. But they also like peanut butter, white cream cheese, tuna and salmon spread. Ricki (and many other children with Down syndrome) want ONLY catsup on their bread. Believe me, I keep trying to indoctrinate her taste buds with low-fat cream cheese….. but it’s:
“Catsup, catsup, we scream for catsup!.”
Thursday, July 24, 2008
The Hearing Aid: 8 days
I don’t know if any of you noticed in yesterday’s post, but Ricki’s hearing aid had been out of use for about 10 days. For a few days we had not been using it because the school aid complained that Ricki was taking it off a lot, and we were afraid it would get lost. So I also choose that she would not wear it during my vacation. Since she would be staying at several places throughout the day, the risk of it getting misplaced was just too great. So I carefully placed it by the telephone, in its case, sure that on my return, I would immediately make a star chart with prizes for wearing it regularly.
Then, Sunday morning, an hour before my trip, I noticed that it was missing.
My heart sank. This tiny piece of electronics costs about $3,000. And while she CAN get by without it short term, she needs it long term: to hear better and more clearly in school, for language improvement, and to save my sanity (since without the aid she puts her tapes at TOP volume). [Try listening to some idiotic children’s tape at top volume ten times in a row, and see if you are not a candidate for the “funny farm”.] However, $3,000 is about a tenth of our yearly income. The original aid was paid in part by the health department, but I quickly checked and learned that they do not pay for replacements every year. The good news was that unless Ricki tossed it out the window (not impossible, but improbable), it was somewhere in the house. Each phone call home during the conference started with my query: “Did you find the hearing aid?” Answers were negative.
On my arrival home, I unpacked, and the next day started the “Clean the house thoroughly and FIND that aide!” campaign. On Thursday I promised 100 shekel (about $30) to charity if I would find it. No luck. Friday I had no time to look. Then Sunday, I promised a double amount (pointing out to my husband that this was only 2% of the cost of a new one). But this time I said “Omar Rebbi Binyamin” ( a special prayer for finding lost objects), and I found it [“EUREKA!!!!!”] behind some books on one of my 50-some bookshelves.
The aid had been missing for a total of eight days. I was thinking about starting the process to get a new one, afraid that Ricki had chucked the old one out the window. (Once, about 6 years ago, when definitely old enough to know better, she had cast a piece of silver outside to the sidewalk below. I am sure the finder was amazed that someone had thrown it out….) We see that monetary loss can cause a lot of action and concern..The question is, as I even one tenth as worried about my weight? My health? My Midot (personality)? I wish I could answer positively…..
Then, Sunday morning, an hour before my trip, I noticed that it was missing.
My heart sank. This tiny piece of electronics costs about $3,000. And while she CAN get by without it short term, she needs it long term: to hear better and more clearly in school, for language improvement, and to save my sanity (since without the aid she puts her tapes at TOP volume). [Try listening to some idiotic children’s tape at top volume ten times in a row, and see if you are not a candidate for the “funny farm”.] However, $3,000 is about a tenth of our yearly income. The original aid was paid in part by the health department, but I quickly checked and learned that they do not pay for replacements every year. The good news was that unless Ricki tossed it out the window (not impossible, but improbable), it was somewhere in the house. Each phone call home during the conference started with my query: “Did you find the hearing aid?” Answers were negative.
On my arrival home, I unpacked, and the next day started the “Clean the house thoroughly and FIND that aide!” campaign. On Thursday I promised 100 shekel (about $30) to charity if I would find it. No luck. Friday I had no time to look. Then Sunday, I promised a double amount (pointing out to my husband that this was only 2% of the cost of a new one). But this time I said “Omar Rebbi Binyamin” ( a special prayer for finding lost objects), and I found it [“EUREKA!!!!!”] behind some books on one of my 50-some bookshelves.
The aid had been missing for a total of eight days. I was thinking about starting the process to get a new one, afraid that Ricki had chucked the old one out the window. (Once, about 6 years ago, when definitely old enough to know better, she had cast a piece of silver outside to the sidewalk below. I am sure the finder was amazed that someone had thrown it out….) We see that monetary loss can cause a lot of action and concern..The question is, as I even one tenth as worried about my weight? My health? My Midot (personality)? I wish I could answer positively…..
Wednesday, July 23, 2008
Discouraged
Yesterday evening I was so discouraged that I didn’t even feel like writing. Ricki had done marvelously at swimming lessons, despite our having missed the previous two sessions. Then in the last five minutes she “ burnt the cake”. She acted atrociously (sticking her tongue out and spitting, and throwing stuff into the water) and we had to remove her from the pool basically by force, to enable for the next student to go in. Then she misbehaved on the bus home, and at home. Also, before the swimming lesson she purposely wet her hearing aid (luckily the $3,300 aid survived), because she felt like not wearing it. (I had made her a “project” to wear the aid and get used to it again after it had been lost for 10 days….) She also managed to break her last pair of eyeglasses (at least just the leg). I realize that this may all be because she suddenly finds herself in a less structured day (even though I do give her some structure), but that fact does not excuse it.
. It will not help her get along with others as an adult
.
Then this morning, she took 3 pita breads (equivalent to 12 slices of bread), thinking that this would be her breakfast. I mean, REALLY! Obviously, her meal was quartered, obver her protests. Again, she overeats when there is little to do, but even THAT should have a limit.
In short, as we enter her first non-day camp week of vacation, I find myself setting limits every moment. I try to be positive, using positive reinforcements, praise, etc., but it is hard when SO many negative behaviors are occurring. I find that Ricki is getting way too much negative attention, if not from me, than from other family members. And I really put her down verbally at one point yesterday evening, which does not help neither her nor my discouragement.
So I guess she needs a bit more structure, filling her days with fun activities, and also some crafts (to express some of that anger) as well. But to fit this in with my need to catch up on housework, etc., is rather challenging. I feel like I need to be superman. But its hard to be wonder woman when you only had four hours of sleep (this time NOT my fault; I am shutting up to protect the guilty party, but it isn’t Ricki).
. It will not help her get along with others as an adult
.
Then this morning, she took 3 pita breads (equivalent to 12 slices of bread), thinking that this would be her breakfast. I mean, REALLY! Obviously, her meal was quartered, obver her protests. Again, she overeats when there is little to do, but even THAT should have a limit.
In short, as we enter her first non-day camp week of vacation, I find myself setting limits every moment. I try to be positive, using positive reinforcements, praise, etc., but it is hard when SO many negative behaviors are occurring. I find that Ricki is getting way too much negative attention, if not from me, than from other family members. And I really put her down verbally at one point yesterday evening, which does not help neither her nor my discouragement.
So I guess she needs a bit more structure, filling her days with fun activities, and also some crafts (to express some of that anger) as well. But to fit this in with my need to catch up on housework, etc., is rather challenging. I feel like I need to be superman. But its hard to be wonder woman when you only had four hours of sleep (this time NOT my fault; I am shutting up to protect the guilty party, but it isn’t Ricki).
Tuesday, July 22, 2008
“Try this Tuesday” #1
My regular post for today is below this one. This post is part of a "share-ideas" posts by several blogers. People who are not parents of special-needs kids, can skip (although much of this info is usefull for ANY parent with small kids....)
For learning letter names, as opposed to sounds, we baked bread dough in letter shapes. It was a fun activity, and we talked casually about the names.
* * * * *
When toilet training Ricki years ago, we covered the sofa, armchairs, and the like with clear nylon tablecloth. Made it less tense…..
* * * * *
Kids learn to climb up on the sofa before they learn to climb down. During that interrum, they tend to take flying leaps off the sofa, and if you have non-carpeted floors, it can be scarey! (Especially here in Israel, where the floors are STONE!)
So we went to a carpet store, and bought a scrap piece which was longer than the sofa, and about 2 feet wide. Then we took it to an upholsterer, who sewed around the edges. We slipped one long side just under the sofa legs, and we had head protection!
for more ideas, click this button, and there click the Try This Tuesday blog for today. There will be an idea there, and more at the bottom of the page:
For learning letter names, as opposed to sounds, we baked bread dough in letter shapes. It was a fun activity, and we talked casually about the names.
* * * * *
When toilet training Ricki years ago, we covered the sofa, armchairs, and the like with clear nylon tablecloth. Made it less tense…..
* * * * *
Kids learn to climb up on the sofa before they learn to climb down. During that interrum, they tend to take flying leaps off the sofa, and if you have non-carpeted floors, it can be scarey! (Especially here in Israel, where the floors are STONE!)
So we went to a carpet store, and bought a scrap piece which was longer than the sofa, and about 2 feet wide. Then we took it to an upholsterer, who sewed around the edges. We slipped one long side just under the sofa legs, and we had head protection!
for more ideas, click this button, and there click the Try This Tuesday blog for today. There will be an idea there, and more at the bottom of the page:
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