The Most Terrible Crime: “They should never have been born.”

NOTE: The first part of this post is a composit from several previous posts, which I am reposting in honor of the "stop the R-word campaign. FOLLOWING it, is an entirely new post, somewhat related.

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 "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.
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.

I have a dream:
I HAVE A DREAM that one day people will see my daughter, and see HER, not her diagnosis.

I have a dream that one day my daughter will be able to walk the street without being subjected to stares.

I have a dream that someday “retarded”, “imbecile”, and “moron” will be a simple description of intelligence, and not an insult.

I have a dream that the world will value people for being created in the image of G-d, and not for what they earn.

I have a dream that the government will someday have the foresight to realize that educating special needs children and adults to be independent is less costly than supporting non-independent adults, and act on that knowledge.

I have a dream that adults with Down syndrome will get a reasonable salary for the work that they do.

I have a dream that people will one day realize that my daughter is not just a burden, a “cosmic mistake”, but that she adds to the value of our lives and society.

And the only way to reach this dream is to wake up, and take a stand, as Rosa Parks did one day, and say “I am a person, oh not so different than you.”


T he Most Terrible Crime: “They should never have been born.”
If you will go to this article by Rosa Monckton, you will get a picture about what it is like to be a baby with Down syndrome in Bulgaria. And last year we saw on the news about the same type of thing, if I remember clearly, in Rumania.
Now we all understand that this type of situation is terrible. A live person should be given a chance to live and succeed. But it is caused by the attitude of “They should never have been born.” And this is the same attitude that is prevalent in 90% of American young couples, if you read abortion statistics. So are we really any much better here in the US?
And who says that only the perfect deserve life?
And even those of us who believe that our kids do deserve life… we are SO busy making them “better”. (Don’t get me wrong, I do the same.) I wonder sometimes if it is because we are really working to help them enjoy life, or is some of this big effort is not fuelled by our desire to show the world:
“See “Sammy” run. See what he can do. See that he is human and valuable.”

I admit to sometimes cringing when I see a person with severe intellectual ability. I shouldn’t, but I do. I admit to not being where I would want to be. Can we give value not only to the cute 3 year-old with Down syndrome, but also to a severely-impaired 30 year old? If we can’t, than we are also guilty, on some level, of “They should never have been born.”

“The Energizer”

Ricki was coming up the stairs after music last week VERY slowly. VERY.It was already 8:30 PM, and I guess it had been a long day.The teen who teaches her was getting a bit exasperated. I called down the stairwell “Ricki, supper is ready!” She instantly reacted, charging quickly up all flights as the teacher rolled with laughter.
“Heaven’s sake, how do you think I get her out of bed in the morning?”, I added…..

Yes, if all else fails, a reminder that she won’t have time for breakfast if she doesn’t get moving will usually do the trick. (But reminding her of something nice schueduled for that day is both nicer and healthier.)

Passover is Coming!

In many Orthodox Jewish households, women bemoan the onset of Pesach (Passover) cleaning, in the same tones I imagine Paul Revere using to announce the onset of British invasion.
Really ladies…. This is a pet peeve of mine.
Peasch is Pesach.
OK., it’s work. It is tiring. But…..

Lets not make Passover an annual tragedy. It isn’t.
Don’t teach your offspring to dread the holiday due to having a frazzled mom.

Tragedy is my email friend Eli losing her daughter last week.
And the same day, a friend lost her battle with cancer. Somehow, we her friends all found time to make it to the funeral.

It reminds me of an incident that happened years ago. A friend who had a baby with a disability was in a post-partum mother’s convalescence home and saw a woman crying horrifically because her son’s bris (circumcision) had been postponed at the last minute. She bitterly said, “I know that she has a right to cry, it is an upset for her, but does she REALIZE that it is a passing worry?”
We all cry at times about things that others feel are not that important. Even minor upsets can be stressful when they happen. I understand that.

But Passover comes every year. You know it is coming. So either start early, or, if you can’t, so do the minimum. You don’t have to scrub the entire place spotless. It’s nice, but not necessary, and you know it. Keep in mind that your kids having a happy mom is SO much more important than doing things that don’t have to be done.

Yea, I know that you are tired.
But…
… there are people in the hospital this week
… there are people sitting shiva (mourning)
….there are people who don’t have money to buy food for Passover

So if you and everyone in your family is well, and you have the health to clean, and your husband helps you out a bit here and there…
Try and be a bit grateful and SHUT UP!

Bundles of newspaper

If any of you ever get a wrapped “gift” package from Ricki, don’t get too excited. She is probably sending you a bundle of paper.
Many times Ricki gets in a generous mood, but she doesn’t want to give away her own property, and she usually doesn’t have a lot of cash on hand. Her solution? Make a nice sized package of newspaper! (And I can not even begin to explain the amount of scotch tape that she wastes on these concoctions….) And since her aide and classmates accept her offerings with an indulgent air, Ricki is unconvinced by my protestations that newspapers are unsuitable as a present.
I usually try to stop her mid-wrapping, to save on tape. In addition, I don’t want to let her make a fool of herself. But her friends and the aide don’t mind; I’m the one with the hang-up about her acting “not normal”. And sometimes I wonder if I should just loosen up a BIT and be a smidgen less concerned about her acting this way. If everyone else can gracefully accept that this is part of her disability, maybe I should too. (Although part of me counters, “inappropriate” is just that, and the right actions need to be learned. That is surely true. I guess what I have to strive for is to teach without getting upset over the existing reality.)

PS Regarding yesterday’s post: So far, 24 hours later, there were no takers. Is everyone waiting for next week? Or till after Pesach? Or was this a really bad idea? Feedback please!

WEEKEND REFLEXTIONS No. 1: a writing exercise

I saw a nice idea on another blog, and would like to do it here, with some improvements. The poster gave a list of ten words, and people tried to write a paragraph containing all 10 words. However, the words didn’t fit me; I would prefer words that a religious person could easily include in a short story. So I decided to do the exercise myself! The purpose is to develop writing skills, increase vocabulary, and---yes—have some fun! So I hope every weekend (Thursday or FRIDAY) to list ten words to be used for posts (which will be linked to from here) for the following week.
Rules:
1. Use all 10 words in a short vignette (or if you’re in a hurry, 5 words in two or 3three sentences). You can use derivatives (incline/inclined/inclination) of words, at least occaisionally.
2. Since many of the readers of this blog are religious, please keep your subject matter pretty “pareve” (clean), but no missionizing as we have all sorts of people here…..
3. If you want, you can add in a bit of explanation, reflection, at the end.
4. Link to here through the Mr. Linkey widget at the bottom of my page. Post the URL of the specific post.

THIS WEEK”S 10 words are:
Foliage – pepper – quill – humorous – spring – truck – artist – drawer – pillow – extrapolate .
If you want to join in the fun this week, go write, and link up below!

Here’s my piece:
Julie stood on the creaky old wooden floor of Mom and Dad’s porch. Well, it used to be their home. Someone was coming around in about half and hour to view the old house. Soon the place would be sold, and another fragile peace of her childhood experience would be lost forever. It was so odd about Dad dying. She really had never expected it; it wasn’t his “style”.
Mason City was a small town, and this street was a quiet one. She had never, she realized, seen a truck on this road. And the only change to the house had been when the coal burning furnace had been replaced with an oil one.
Julie took mom’s old duster, and brushed off the layer of dirt that dusted the railing that ran around the porch. The foliage in the yard was still a bit wane, but spring was definitely on its way. Her artistic eye envisioned the scene before her on a postcard. Maybe even in a framed stand on her desk at work, with a quill and inkwell nearby. Dad would have liked that; he had a good sense of humor, and wasn’t a fellow to mope around. And now? She tried to extrapolate from her vision of him to what he would be like up in heaven. She wondered, wryly, if there was a place in heaven for the wit that Dad had, something he seemed to pull from life the way others pull open a drawer. With that final thought, she fluffed up the pillow on the old swing at the porch’s end, and went inside to add some pepper to her salad.

Notes:
Julie’s “Dad” is a mixture of my Dad and Grandfather; the porch was my grandfather’s.




NEXT WEEK’S TEN WORDS:
Sparkle – spice – consider(ed) – feisty – tune – howl – fell – “hip-hop” - peculiar - incline (or inclination)

Detective Case 390:The Disconnected Phone

Recently there was a very interesting case of “crime” in our home, which I want to share with you today. A few days ago, my son went to answer the ringing telephone, only to discover that the kinky cord leading from the receiver hand-mouth piece and the remainder of the apparatus had been STOLEN.
Mrs.Sherlock Holmes (yours truly) was quickly summoned to the crime scene. After asking for clues, she remembered that Ricki had asked, on her return from school, for her mom’s cell phone. However, the cell phone was in place, intact. Investigation of the premises revealed that the missing cord had been placed under some cushions. In addition, Ricki’s school report was missing. Mrs. Holmes quickly contacted and interrogated the aid, and received verification of advance premeditation on part of the suspected perpetrator:
As reported by the aid:
“Ricki spent math hour today sharpening her pencils, so of course I did not give her a smiley for that hour. The following hour was more or less the same. She revealed that she would not deliver the sheet, thus hopefully avoiding any “consequences”. When I countered that I would call her mother, Ricki insisted that she would disconnect the phone cords.”

CASE SOLVED and closed. Guilty of being smart as can be.

The Photo Album

Do you want to realize how little you really know about your children’s lives? Sit down a bunch of grown siblings, and their parents, and open the photo album (or show some family pictures in a slide show.) I’ve done this with my siblings, and with my older children. The results are amazing……..
….. For example, I remember until today how I slaved every afternoon with a child over their first grade notebooks, helping them find “good” words for each letter of the alphabet, pictures to match, etc. The girl in question, now an adult, had absolutely NO RECOLLECTION of my faithful help.
….. Imagine my horror as I overheard three siblings talking about the teens who accosted them every day on the way home from school for a month. I had been blissfully unaware of any incident like this.
….. Listen to siblings and parents talking about a shared trip. Yes, there will be things that they all remember, but many times you would think that they are talking about completely different excursions.

The lesson here is, of course, to keep our eyes and ears open. Try to imagine how your child is viewing the experiences you are sharing. And pray that you catch any important information.
* * * * *

An added advantage is that you can see your siblings/children differently as you see what was/is important enough to them to note. I always knew that my older brother is more intelligent than me, but I had more of an inkling of HOW big the difference was as he rattled off dates and statistics for all our former family trips…..LOL, as he was gathering statistics I was writing poetry and discovering G-d in the wonder of the natural world.

[Picture: the "Keyhole", Longs Peak. I remember vividly the keyhole. I also remember one snowy ascent of Longs Peak that we had to abort because of snow. But it wasn't aborted before transversing the narrow path -just past the keyhole- with a shear drop off at the side. I wore holes in the fingertips of my gloves from holding the stones litterly for dear life. I am sure my Dad had no inkling how petrified I was, while simultaneously loving the chance to go up Longs again.(I had climbed Longs previously, at a young age. What age? I don't know. Ask my brother.....)]

Try This Tuesday-

SAYING "NO" TO POLLYANNA: (SPEAKING TO NEW PARENTS)
It just so happens that I speak a lot to parents of newborns with Down syndrome. For a while, I understood that certain people where not happy with this, seeing that I often will mention (amongst all the positive things) certain negative things. But I refuse to be a Pollyanna.
Lots of parents, speaking to “fresh” parents, tend to gloss over the rougher points: Toilet training can take what seems like forever, this is a test that doesn’t fix itself after 6 months, others will act differently towards you. They emphasis the “loving nature” of kids with Down syndrome, the blessings and vision it has brought them.
I hate to say it, but most new parents are not taken in by the “Pollyanna” version of Down syndrome. No one seems to be pounding at heaven’s door:
“G-d, PLEASE , ONLY a child with Down syndrome! I want clarity! I want fulfillment! PLEASE!!!!”
And since this is NOT happening, new parents understand that there IS some sort of challenge here, some major difficulties. What they want, and need is two things:
12. An idea of what they can hope for in this child, what the future holds for them
2. An assurance that their lives, and that of the baby’s siblings, are not irrevocably damaged and ruined.
3. They want to know what they can do NOW.

So first when I go to see a new parent, I try and bring a nice gift for the baby:
1. The first item I bring will be something that implies a certain level of attainment: “tzitzes” (a garment worn by Jewish boys only after they are toilet trained), a book, a counting toy, or the like.
2. The second item is a toy “Porcupine” (I have NO idea what this is called in English): a ball of soft flexible plastic quills (common on key chains), which can be used in skin-stimulating therapy.

And of course the MOST important thing is to come with a warm smile (it is NOT a wake, even if they are crying) and a “Mazal Tov” (“Congratulations”): Let them SEE that life stayed good for you.
Often the way I start is by sharing an album of pictures with Ricki. Now this album does only have nice pictures, but the important thing is that very few of the photos are “portraits”. Most are of her DOING things. One could add in photos of other children as well. But the emphasis must be on the doing: reading a book, feeding a pet, dancing, at the computer, listening to a walkman, etc. This activity is often their first exposure to the abilities of children with Down syndrome, and it is not just YOUR word: they can see for themselves what the child is doing. This often leads straight to questions:
“What, she can read?”
“She has her own camera?”
“What, she’s in a regular classroom?”
“Wow! She made that bead necklace at age 5?!”
“At what age did she get glasses?”
“I see she has a hearing aid? Do all kids with Downs have trouble hearing?”
Then from the questions I slide to my major points:
1. The doctor may have told you that the range of intellectual impairment can be “mild to severe”; what he did not tell you is that 95% of children with Down syndrome fall into the mild-to moderate range on IQ testing, which means that your school-aged child with Down syndrome will (in all probability) be toilet trained, learning to read, able to dress himself, sweep the floor, and set the table.
We have today a tremendous amount of information about the learning profile of children with Down syndrome. We not only know their cognitive problems, but we have been able to develop ways to help them learn more effectively. Today almost all children with Down syndrome can speak, although I admit not always completely clearly, and the very large majority can learn to read as well. They have extra difficulty with math, so today we are using special methods to teach math which capitalize on their (relatively good) visual memory, rather than verbal memory techniques.
2. Today there are many options available to our children: special education, inclusion, etc. They do NOT have to make up their mind today what they want to do. There IS however, a lot of bureaucracy involved, and the need to fight for what is legally coming to your child can sometimes be a real pain in the neck. That is one reason why I recommend that they join our parent group: the power of a group is larger than that of individuals. Also, their neighbor and mother and sister-in-law will not have experience with Down syndrome. So when questions arise (like which eye doctor will treat my child as a child, and not as “Down syndrome”), you are going to need contact with other parents. Other parents will also be able to emphasize with you over problems, and not try to “whitewash” them, as others are likely to do. Also they should keep in mind that they do not have to, today, plan out their child’s future: group home? Private apartment? Married? Single? Their child will be, with their aid and guidance, the determinator of his future.
3. Siblings can be a touchy problem. But if you play your cards well, they will grow and mature from the experience. (And here I share benefits that my kids have seen, as well as some common pitfalls –see HERE for pitfalls….)
4. And finally, I try and show the parent a few things they can do with their child TODAY, as well as information on community resources.

I know that this is a long post. Hope it is helpful for someone.

Threats, Punishments, and Rewards

Life with Ricki is never dull, and I really have to be quick on the “draw” to keep up with her. It is amazing at how stupid she takes me to be. (For example, if she is hiding something behind her back, out of view, she generally assumes that I will not notice and react. In actuality, if she wouldn’t be hiding it, but would walk by casually, I would have less of a propriety to notice the offense.) In addition, she knows my weaknesses, and plays them to her advantage, unashamedly.
I have had a tendency, over the years, to threaten a lot and be slow on application of promised punishments. After this was pointed out to me by a play therapist I had hired one year to work with Ricki, I made efforts to improve. Nevertheless, Ricki knows that if she manages to do something behind my back, the consequences will often be less than if caught directly in the act. The simple reason for this is that by the time that the “crime” is discovered, she may be at school, and it is likely to slip my mind before her return. Or, perhaps, on her return she may be carrying an excellent report from her aide, and she is expecting her reward. Such a moment may be a difficult time to punish her for deeds long gone, with the possibility of confusing her entirely.
So immediately before going downstairs today, for her ride to school, I was putting Ricki’s hearing aid in. [She does not particularly like the hearing aid at school. Sometimes her classmates are a bit big on the volume, and the aid amplifies it to the shrieking level the rest of us have to deal with. Ricki has a much simpler solution than covering her ears: she simply yanks her hearing aid out!] Therefore, I promised Ricki that if she wore the aid the whole day (with the exception of the 10 am break), I would let her hear a new cassette tape today. Then as she was slipping out the door, I noticed the second (sugarless) candy she had slipped in her pocket, after I had told her explicitly that she could take one only. I protested, but she dashed out and down the stairs. (Her driver will be glad she went downstairs on time….) My threats of dire consequences floated after her rather ineffectively.
So I am writing on my schedule today to apply “consequences”. If she has a prize “coming to her” due to schoolwork, or wearing of the aid, I think I will try to POSTPONE it by an hour, as punishment for not listening to me this morning. But consequences there will be.

Things Like Out of a Novel

You would not be very blameworthy if you thought that this story is from a novel. My son-in-law seems to have an aptitude to get into the most extra-ordinary situations. As I related in the COMMENTS to a previous post,he was once lynched by a group of Arabs, being saved at the last minute. (He was so upset at the way he was sent without a good guide that he demanded – and received- an exemption from any further duty.)
Well, again he has had the story “of a lifetime” this week. And my subtitle for this post is: “My Son-in-law the Tzaddik” (“righteous one”)
K., my son-in-law is not your typical “religious” Jew. Certainly not the typical type of Chareidi (orthodox) person that my daughter would have been expected to marry if you knew which high school she had attended. But K. is, in my mind, a very good fellow, and the following story shows it.
K. is working now as the director of a “refurbishing” (fixing things, cleaning marble, etc.) at an area where many people pass daily. Usually he works alongside his workers, directing them as he works, not from the ground as most bosses would. But one day last week he was feeling a bit under-the-weather, so he sat and drank a hot glass of tea as his workers tackled their tasks. Suddenly K. noticed a briefcase to the side of the work area. He asked who it belonged to, but got no reply. He opened it to look for identification, and discovered that it was packed to the hilt with money. This, to put it mildly, was NOT what he had expected. He immediately realized that he had in his hands enough cash to pay off a lingering dept from his wedding, and perhaps enough to put a down payment on an apartment. It was a find like you only read about in stories.
Rather than call his wife with the good news, he called his Rabbi. Money usually does not have “identifying” signs, but, his Rabbi said, if someone comes looking and ASKING for the money, the amount and the type of briefcase are yes signs, and you should return it in such a case. A while later he saw a couple going by, a chareidi (Jewish Orthodox) couple, and the wife was crying. K. went over and asked what was wrong. He got no answer, and asked her again. It turned out that they had lost the down payment for an apartment, one they had saved up for, penny by penny, for years. Now they and their children would have no means to buy an apartment after all. So my tzaddik of a son-in-law said good-bye to the money and returned it. In print it looks easy; in life, when you know exactly how you could use it, it is not so casually done……
Of course I told my daughter, “I am sure you didn’t lose out with this. This couple will be blessing you in their hearts, and I am sure that this will be a big advocate for you in front of G-d.”
I know that I appreciate my son-in-law, but now I admire him even more…….

[PS. I originally posted this last night, and later removed it and posted something for Down syndrome day. So if you missed that, you might want to go check it out. (Like if you arrive here via a feed.) (And R., who got confused last time that I did something like this, I was thinking of you. Yes, you DID read this-prehaps--before!) Have a good week everyone!]

Down Syndrome is NOT “What She Is”

This is a bit late, but I anyway want to post something for “down syndrome Awareness Day”, March 21st, (3-21: 3 copies of the 21st chromosome)
The debate over “would I change her if I could” has not left my mind. While this ride through “Holland” has enriched my life in numerous ways, and while I value those with Down syndrome, I am still puzzxled by those who would not change the condition if they could. Many write that “Down syndrome is what she is….”
WHAT was THAT?!!?

My daughter is affected by Down syndrome. Very much so.




But I can NEVER imagine saying that Down syndrome is “what she is”!
Ricki is a pest.
Ricki is funny.
Ricki can be damn right smart when she wants to be.
Ricki is a natural at dancing and movement.
Ricki loves good food.
Ricki enjoys people.
Ricki hates hard work.
Ricki can meet a challenge and tackle it.
Ricki thinks her mom is dumb (judging by how she tries to get away with hiding stuff behind her back.)
Ricki is many many things. But much much more than “Down syndrome”.

(PS. I am not meaning to attack whoever wrote like this. But as a mother of an older daughter, it is so clear to me that my daughter's personality overshadows her Down syndrome.)

Would I Change Her? / Changing Myself

The topic “Would I change the Down syndrome if I could?” is a hot topic this week on blogs of children with DS. Perhaps this has something to do with March? It is almost exactly a year ago that I wrote on this topic, which you can read HERE.(And don't skip the comments! There is a whole added further analysis there....)(And Yes, I would….)
But right now I am wishing I could change myself a bit. (At least it wouldn’t need an open miracle to do so.) Why? Because I really lost it last night with Ricki. It was a busy day for me, and when I finally had a chance to sit down with Ricki and do homework, she didn’t cooperate. Not at all. She took forever to eat supper, and an infinity to put her stuff away. Then, to top it off, she started up with some of her “learned helplessness techniques. And I really had neither the time nor the patience to deal with that. So instead of THINKING how best to handle the situation, in the end I simply sat there yelling at her for being an uncooperative pest.....

The Sad Story of a Soldier

On one of my soldier-son’s visits home, he mentioned how he had been thinking about Gilad Shalit. He had given a lot of thought about how miserable he must be (if he is even alive), and how he may not even know about how many people are campaigning for his return. “Who knows? Maybe he thinks he was forgotten.”
After about five minutes on this topic, I begged my son to change the topic. As a mother it was simply too upseting to let my mind go down that road. I certainly pity his family.
Unfortunately, as I told David, it is not so easy to give into demands. It only encourages more of the same. And I pray that I never haver to view it from more than a theoretical aspect. But one thing I feel very strongly: There should be NO deal whatsoever if Gilad is not alive, not like previous swaps, where we swapped terrorists for bodies. The Arabs have to learn that our soldiers are only valuable to them alive.

Wordless Wednessday

Last week, two days after Purim, Ricki had a “writing sentences” practice hour at school. So I prepared for that class a page with various pictures from our holiday festivities, including one of her in costume. Here is the picture, and she wrote; “I dressed up as ‘Music’. I am beautiful.” How lovely that she sees that!

Disciplining Your Teenager with Special Needs

Disaplining a teen with special needs can be tricky. There are a lot of matters that you have to consider:
1. A teen with special needs is likely to be just as much (or more) a “teen” than a person with special needs. Like all other teens, they crave independence, autonomy, and being themselves. This may be a big jolt for a parent who until now has been treating this child as a person with his mental age. Even a child with normal intelligence, may have needed (and may still need) more help physically than your average teen, and this is a sure producer of friction. For the teen with an intellectual handicap, “I can do it myself” can be downright frightening to a parent who understands the dangers that may be enherit in the child opting to do things “themselves”. Especially if they haven’t studied the topic at hand at all……
2. A teen with special needs knows what he wants, but may lack either the intelligence or impulse control that could help a “normal” teen see that a certain plan of action or type of behavior is entirely non-productive for them, or not safe.
3. The teen , even if he has intellectual disabilities, can probably read you BETTER than a book. Any inconsistencies, any non-enforcement of rules will be duly noted.
4. Despite all of the above, there may be times that we need to give the child a bit more leave-way because he simply is not able to act 100% in accordance to our desires.

A few examples:
1. I once considered myself a good disciplinarian until I realized that I “spoke” clearly, but often was not alert enough (or was too busy) to properly enforce. If I tell Ricki thast she can eat only one soya patty, but she sees that she can often snitch a second (or thirds or fourth) without severe consequences, she has been taught by me to try and get away with snitching.
2. Many parents try and protect their children by giving them fewer exposures to danger: no going to the grocery, no lighting of matches, etc. The problem with this method is when one sunny day the child decides on their own to do the action, without any prior preparation whatsoever…..

Suggestions:
1. In general, unless there are very extenuating circumstances, this teen should follow and keep all the regular household rules. Even when you are busy, take the time to stand there and insist that they pick up the Kleenex they tossed behind the stove. It pays in the long run.
2. Never ever ever threaten a consequence that you are not able and/or willing to follow up on.
3. Actively work to help your child gain any independence skills that they are able to do. If they are attempting to do something you have not taught them, take it as a warning sign that you are not keeping pace with his desires for independence.
4. This next point is a difficult one for me, but I am improving: If you are doing something fun or good with your child, and they are acting atrociously, STOP if at all possible. Especially if this is a recurring theme. For example, Ricki always acts up when trying on clothing. Last time I went shopping with her, she started up, as usual, so I left the store. She learned that day that I will not tolerate certain behavior, even if it means that I will have to return a second day to finish then shopping.
5 For any bad behavior that is recurring, try and step back and see what the child is “gaining”. Any affective intervention will need to take this into account. Help him gain a good objective in a positive way.

A Few of my previous Posts on these themes:

http://beneaththewings.blogspot.com/2009/01/down-syndrome-children-not-letting-them.html

http://beneaththewings.blogspot.com/2008/07/i-hate-shopping-with-ricki.html

RECOMENDATION:
I highly recomend the following book if you have a teen with special needs and a serious behavior problem. It is a practical, in-depth approuch:

http://www.brookespublishing.com/store/books/hieneman-8655/index.htm

The Long Grocery List

There is no such thing as to send Ricky to the nearby grocery store with a list of under three or four items.

“Ricki, would you please pop over and get me a bag of milk (milk comes in bags in Israel) from the grocery?”
“What else?”
“I don’t need anything else.”
“How about a (canned) drink?”
“Ricki, canned drinks are expensive and I just bought you a drink yesterday on our way home from dance class. You don’t need it…. I don’t buy myself a treat every time that I go to the store, you know. So please just get a bag of milk or we won’t have any tomorrow morning.”
“Oh, come on…” She goes over to the fridge and opens it. “Don’t we need yogurt? Grape juice? Maybe garlic?” So I squeeze another item on the list. She is not really satisfied, but suddenly her face lights up. “Hey, I can go to the vegetable store as well!” She reopens the refrigerator door. “We need red peppers…..”
We find two things she can buy at the vegetable store, and she is off, beaming. I just can’t figure out what is so bad about buying only one item……

CONCERTA and the Birds

Ricki was a pest on Saturday morning. A real honest-t-goodness pest. Suddenly I remembered at noon that I had forgotten to give Ricki her daily dose of Concerta (slow-release Ritalin for ADHD). Well, after receiving it, she started acting normal. I am glad we have it….
* * * *
There were two birds trapped in the stairwell this morning. Ricki panicked. She looked like someone from the set of "The Birds" (Hitchcock). I was finally able to shoo them INTO our house (from which they had an easy exit via the living room window). With that Ricki was able to go downstairs. EVERYDAY there has to be SOMETHING!!!! Murphy’s law---here she was in a good mood, ready to go down... and then the birds flew into her line of vision....

“These Kids are SO Loving…..”

People who blurb platitudes like the title of this post should have seen Ricki on Friday morning. I had been very nice to her the entire 40 minutes after she woke up, despite the fact that she had been in a rather belligerent mood. I tried to ignore her scowls as best I could, and redirect her to the tasks at hand (like getting ready for school).
As she was leaving the house, she suddenly decided that she wanted some candy. I refused, but she headed towards the closet, pushing me aside, and searching on her own. I reiterated that she was NOT going to have candy, but since her breakfast had been a bit small, she could have 3 small crackers. She took the crackers, and continued her search for candy. I told her emphatically “NO”, explaining the ANYWAY there is no candy in the house (we sent all nosh off immediately after Purim, to make restraint unneeded…). (We only saved a bit in a closed box, for Shabbat to share with soldier-son David.) Well, she threw a real tantrum. Thankfully I managed to not answer her back (hoping to decrease the volcanic intensity of her eruption), but she continued ranting aloud in the stairwell. After her driver had waited patiently 5 minutes, I phoned his cellular phone and told him to go ahead and leave. It was time for Ricki to learn that her ride will not wait forever. Luckily for me, her present aid lives near us and joins Ricki in the cab. So I would not have to get dressed and accompany Ricki myself. The aide could do so, especially since it was already 8:00 am (when she starts work), and the school is really only about 20 minutes away by foot at the most. I explained that today they will have to go to school by foot, but the aid was a bit concerned that Ricki would be problematic on the way. However, even as we talked, my daughter was calming down, and the aid agreed to accompany her.

I hope that Ricki learned a lesson today.

But she is not ready to be the world’s peace diplomat, “SO loving”……..

“Mommy, You’re Different”

Yesterday Ricki caught two spelling mistakes (in Hebrew) that I had made. I am a terrible speller in English (I LOVE spellcheck!), and I fare considerably worse in Hebrew. So more than once my daughter Ricki (yes, my daughter with Down syndrome), has managed to catch my bloopers. Yesterday, having caught me with TWO mistakes, she turned to me and said: “Mom, You are Different”. Now was that a compliment? I guess she wants me to go for remedial work in spelling. Well, maybe I need it. I have “Americani syndrome”.

Gosh, I Wish She’d Learn Math That Fast…

Remember my post about “Running Away” from Ricki, down the stairs? Yup. A useful tool, if I do say so myself. Problem is, now Ricki’s doing it.
The other day, Ricki asked for some crackers to eat on the way to school. I refused, seeing that she had already had a very satisfactory breakfast. So she simply grabbed the package and ran down the stairs. Being that I was still dressed in my not-so-appropriate nightgown, I demurred following her. I did yell a threat of “consequences”, which were duly carried out on her return.
She certainly picked that strategy up fast! We’ll see if she absorbs the ramifications (consequences happen) as well. I used the “run away” technique only once or twice, but she seems to learn some things quick. Wish she would learn math as quickly….

Purim and Odds and Ends

[Purim is a Jewish Holiday where kids get dressed up in costumes, and adults send gifts of food to each other, and all read the scroll of Ester.]
Purim was nice. At first I was only expecting one son and his family, and maybe a quick pop-in from another sibling or two. But in the end we had four siblings (and their spouses and offspring) around the table. (TableS)
I made no fancy costumes this year. Ricki was satisfied with something very simple, so I left it at that.
Funny thing: A 2 year old granddaughter came to me holding out a 10 cent coin that she had gotten from her uncle. (I never would give a child that age money, but she was OK…) Anyway, she was speaking Yiddish, so I asked her mom what she wanted from me.
“She thinks its chocolate money, and wants you to take off the wrapping.” YIKES!
* * * * * *
Soldier son David was in the army and really missed out. But if that meant more married men being home, I am glad for that. But apparently, the army, like most non-religious Israelis, views Purim as a “kids” holiday. My son Noach also missed out on Purim by skipping over to Los Vegas to work. They may have a lot of shenanigans there, but not Purim. He told me that when people read his ID in America, they read, questioning, “N-ou-ch?” (rhyming with “ouch”). [His name is the Hebrew of Noah, “Noo-ach”]

Try it Tuesday: Teaching Money

Teaching Values of Coins
If you are using some type of concrete representation for numbers, such as numicon (which I recommend HIGHLY), one can teach the fact that each type of coin has a separate VALUE by taping/placing the coin over the representation. [I scanned the numicon, and the money, and put one picture on top of the other, printed, cut, and laminated, and re-cut. This way the money can’t fall off.]
(Shown are numicon shapes for one, two, and five, with the one/two/five coins, respectively, on top.) (Don’t worry if you don’t recognize the coins. They are Israeli.)
I also made several scanned copies of the coins alone, to be used in counting in 2’s and 5’s practice.

Finally, I made a match-the–pair card game where the child has to match up identical sums. I scanned money (against a white background), including both sides of the coins. Afterwards, I printed cards with varying amounts of currency, matching pairs having a different color of frame. (Coloring the back of the card with a dark color of crayon makes them non see-through. Again, take care to keep one half of all pairs one color, and the second half a different color.) Then I cut out the cards, and laminated them, and cut them out again for the final result.

Now “teaching how to manage money and how to make decisions about spending, saving and giving” is still mostly beyond our experience. I did notice that Woodbinehouse’s book Teaching Math to People with Down Syndrome and Other Hands-On Learners
Book 1 has a good game to work on this problem.
It seems to me that a good place to start would be to make a running commentary on my own purchases when I am with her. How much things cost, why I am choosing this and not that (quality versus price), and to gradually, as she absorbs the information (ie, she knows that a bottle of soda juice costs 1.5 to 2 dollars), involve her in the decision making process. Also it would help to often give the child a choice: I am willing to buy you X or Y, so that they can see that you don’t always buy ALL.
Another skill needed is that of returning defective objects, and avoiding being made into a "sucker". I have posted on that HERE.
and (a lesson in "watching out")HERE
A final note: to any of you who may be reading from here in Israel, Mattach has an excellent computer game (see HERE) on money matters, for the special-needs population. It covers everything from recognising coins and bills, paying the correct amount, knowing the amount of chance deserved, and a bit about social aspects of money (what is a wage, etc). You can make its menu only show what you are interested that the child work on. This is not a replacement for one-on one teaching, but Ricki LOVES it, and I find it to be a very good "practice your skills" program.

Happy Purim

Wishing you a VERY happy and SAFE Purim!

The Day Before Purim

Today is the day before Purim. Lots of people think that it is only a kid’s holiday (since children are the ones who typically get dressed up in costume), but it is really a very serious (although lighthearted) holiday. A careful reading of the scroll of Ester reveals a scenario of deceptions, lies, behind-the –scenes deals, and silent heroism. Sounds a bit like the current situation in Israeli politics………..
Only one thing has never ceased to amaze me. How do some people celebrate Purim , and then go to Jerusalem to join the “walled cities’s Purim”, Shushan Purim? How can someone take two days of so much noise??!??

Today there is no school(Hoo-ray! I got to sleep late! "Late" meaning 8 o'clock). So now Ricki is at the grocery store, giving her Dad a break from the morning shopping.

“Willie”

“Willie” wasn’t his real name. His parents are not internet users, and probably wouldn’t want me to post about him. But I will use a completely different name to give him anonymity.
A few days ago I was busy calling several mothers of young adults with Down syndrome, to see if they were still interested in being notified about group meetings in our town, or only special events pertaining to young adults, or even not at all.
When I reached Willie’s mom she paused.
“Did you hear about Willie?”
“No…”
“Willie died about two months ago….”

Now I’ve known Willie’s mom for about eleven years. Willie was a youngster of about eleven at the time. She complained to me how he was not progressing at all in his special-ed school, one specifically for low-functioning children.
As the years passed, his mother put pressure on his school. Eventually he was reevaluated and they finally admitted that in addition to having Down syndrome, he had autism. He was not as severely retarded as they had thought, but they had not been approaching him in the correct way. For years the school had been working with him in the way one works with a child with just DS, not taking into account his additional diagnosis.
Unfortunately many years had been lost, because no one had asked “Why is this not working? What needs to be done differently? What are we overlooking?” The school finally started working with him in a more appropriate way, and some progress was seen.
And I always admired Willie’s mom for her perseverance, her belief in her son, and her ability to see beyond her son’s severe behavior problems to the soul within.

“You know, I miss him. We were very close….”

I have no doubt of that. But I think of all the children with Down syndrome who never get the chance to be what they can be, whether it is due to poverty, ignorance, prejudice, and it makes me sad. In twenty years who will remember Willie? Will anyone besides his mother shed a tear over what could have been?

Firecrakers!

One year my then 11 (?) year old bought a "shatiach" (rug) of small fire crackers. He went to the roof to light ONE. (He KNEW I didn’t allow….) Accidently he set off the whole rug. It sounded like a machine gun going off. We got calls from everyone who knew us in a one block radius, yells from the neighbors, and he was crying as no one was commiserating with him over the valuable loss!

But I guess the enforcing of "NO SELLING" firecrackers is helping--- have heard none so far this year! (Which is good, as Ricki HATES them and goes a bit “ballistic” if she hears them.)

“If I Knew Then What I Know Now” -Down syndrome and Adult Choices

Before Ricki was born, I had experienced exactly 6 exposures to people with intellectual disabilities, four of them to people (or about people) with Down syndrome:

1. One of my mother’s friends had a child with Down syndrome. I saw him from afar maybe once. When we went to their house each year to watch a TV special (we had no TV for many years) he was no where to be seen. My mother told me that he was not expected to live beyond twenty.
2. My neighbors had an older teen with intellectual disability. He was a nice fellow, worked, and coached a children’s baseball team.
3. My nursing school textbook had an article on Down syndrome. It was thoroughly negative, and the accompanying picture of a squalling infant with Down syndrome was no better. None of the lovely pictures you see today.
4. When in nursing school, we saw two institutions for the care of the intellectually impaired, including several children/adults with Down syndrome. One was a terribly atrocious state institution (which was closed shortly afterwards), and one was a state of the art private facility for educating children with intellectual impairment and/or autism.
5. I roomed for about a year as the live-in “emergency help” for a couple where one partner had learning disabilities, and the other mild intellectual impairment. They were a warm and likeable couple, and I got along with them very well.
6. An acquaintance of mine had a baby with Down syndrome who was ill and died. (Although I never really saw this child.)

So in many ways I was lucky. Because even though I had been given several negative exposures to Down syndrome, the long-term exposures I had experienced (2 and5) were positive. Nevertheless, when Ricki was born, many questions filled my mind: What is the life expectancy today for people with Down syndrome? Can she get married? Is it ADVISABLE for her to get married? What can I expect? How do I travel this road?
I called my acquaintance whose baby had died, and asked her if by chance she still had any books on Down syndrome. When she told me that she had never had any, I was floored. Absolutely and totally flabbergasted. I immediately wrote my mother with a plea: send me some English materials on Down syndrome!
And as I read more and more materials, and gathered information, I started mapping out Ricki’s life for her. I still was querying myself on whether it was expedient for her to marry or not, when I came across two books that radically changed my viewpoint. Both today are out of print, but if you can buy them used, or obtain them at your local library (on loan from another branch?), they are both worthwhile, informative, and entertaining reads.
The first is Retarded Isn’t Stupid, Mom by Sandra Z. Kaufman (Paul Brookes Publishing -1999). In this book, the author describes her daughter’s fight for independence, and the results. Her daughter is a spunky character, similar to what I was seeing in Ricki. It suddenly hit me that at age 22 Ricki was not going to necessarily acquiesce to me running her life. As a matter of fact, it was (is) very highly unlikely.
A second good look at life of a young adult (older teen) is Adventures in the Mainstream by Grg Palmer.(Woodbine House -2005 – ISBN 1-890627-305) First, this book is interesting just by itself. In addition, in its pages you see how even a high functioning teen like the author’s son, Ned , have their own quirks that the parent really is not able to control. And how this child can be helped to succeed and prosper.

So what message do I have to say, “If I knew then what I know now”?
Don’t worry so much about your child’s future. For sure worry enough to give him an excellent education, and to push him to learn independence skills. But don’t fret about it. Because it is your child’s future, not your choices. The big decisions should ultimately be his own

“Mommy, That’s Absurd!”

One of my tasks as Ricki’s (unofficial) special education supervisor, is to prepare tests for her studies. This week she was to have a test, and I made a pre-test study page as well. As she was answering the questions on the sheet, she suddenly stopped.
“MAH ZEH?!?” (What in the blazes IS this??!!??) She read aloud one of the “wrong” answers of a multiple choice question. “Mommy, this is ridiculous! How absurd!”
And she continued, rather incensed, to grill me on why I had written something so stupid on the worksheet, implying rather horrendous and sinister results if said practice was repeated.
I think I better rephrase that one…….

My Son, the Soldier-Trainee

My son finished his basic training today. He asked me not to come to the ceremony, as he felt that it was that important to warrant me losing out a half-day or more of work. But he did mention that he had heard a whisper that he was being considered as "best trainee" from his group of forty. So I urged his older brother to put in an appearance, so that he would have who to "show off to" if he did win the award. So I guess that he was a bit disappointed when his name was not called as the"Mitztaen" (best) in his group of forty. That is, of course, until he was given the award for the best in his entire plugah (army group) of 120 trainees. His older brother was even generous enough to come back by bus, and leave David his motorcycle to come home with tomorrow. I am pleased that David has someone to tell him (besides me): "You're great!"
Too bad my Dad is not alive to see this, not my father in-law. I think that they both would have been proud to see David today.

Ricki’s Driver (the “Mentsch”)

Ricki’s driver to school is a “mentsch” (someone who acts nicely, properly).
I have related in the past (here) how Ricki often goes down late for her ride.
Yesterday morning Ricki was late again. The driver was honking downstairs, and Ricki slowly and painfully made it down the stairs, having managed the day before yesterday to re-twist her almost-healed sprained ankle. But while I could have blamed her tardiness on the ankle, I was honest enough to go down and apologize to the driver, as her lateness this morning was due more to the fact that I had overslept than any actions on Ricki’s part. In fact, we had managed to get her ready and downstairs in record time. (I am planning to fill out the forms for Guinness tomorrow….)
The driver gave a non-chalant wave of his hands. “You think I was born yesterday? It’s O.K.!”

A mentsch.
One of those people that makes my life a bit easier.Yes, amoungst all the stupid officials, the people who love to make your life difficult, there ARE those who fit on the good side.
The holiday of Purim is coming next week. Guess who will get a nice “shaloch manos” (gift of food)? It is certainly coming to him.

Bed Wetting

OK. I will be honest and admit that I have been lying. Not actively, but passively. I haven’t mentioned up to now that Ricki is a bed wetter. Not always, of course, but often enough.
First, bed wetting is nothing new to me. I remember when I was a young mother reading doctors reports that bed wetting is caused by overly –exacting mothers, et al, and saying to myself: “Mah Pitom!” (*&%^*$&^$&#^$). Years later the “learned scholars” came up with the same cause that I had know all along: people who are deep, heavy sleepers have a tendency to be bed wetters.
While some of my children were bed wetters, and some were not, it was obvious that the deep sleepers were the ones who went “swimming” at night. I‘ve had teens who were so deeply asleep that it took five minutes of tapping on a window near their head to awaken them to unlock the door they had inadvertently left the key in (preventing it’s being unlocked from the outside). (That’s a DIFFERENT post maybe, someday…..) If it takes an atomic blast to awaken you, it is not surprising if “Mother Nature” doesn’t succeed either…..
Of course, we went the same route as most other parents in this quandary: beepers, buzzers, and waking the kid up, etc., and eventually all were cured. Except Ricki.
Ricki not only inherited the “deep sleep” gene, but it must be a gene on the 21st chromosome, because I swear that she must have three of them! In addition, she hates buzzers, and, and removes them if we place any in her bed or clothing. She has NOT been interested.
Obviously, some of this comes from her not really being too interested or concerned about the problem. It is noticeable that when I was with her at my parent’s house a year and a half ago, on a visit, she got through the entire month with out accident. (She does get medication that helps prevent bedwetting, but it is by no means fool-proof.)
Anyway, lately I have noticed that Ricki has been on occasion, getting up to the toilet when half asleep. This is the first sign of concern on her part. This is a very hopeful sign, so I am thinking of “stoking the fire” by offering (now that she has shown SOME concern) some type of incentive. Wish us luck!

Try it Tuesday

Woodbinehouse publisher’s book Teaching Reading to Children with Down Syndrome (see HERE)has a very interesting story at the beginning. The author relates that one of the reasons she started to teach reading to children with Down syndrome was to give the gift of “another language” to a non-verbal child. And it is, indeed, a great gift.
Many non-verbal special-needs children are very smart, relatively speaking. Their lack of speech is not necessarily a sign of “deeper” intellectual impairment. There are many things that can impair the speech process, and not all are related to intelligence.
Reading is beneficial to the non-verbal child in many ways.
1. Reading may actively help speech. With the written word, the sounds are “there” in front of his eyes. Unlike the spoken word, which passes in a flash, the written word can be examined, thought about, and tried as the word is still in view. (This is one reason that reading will help verbal children improve their pronunciation of opening/closing sounds.)
2. Learning to read also improves memory, which is also good for speech.
3. Learning to read will help a child who remains non-verbal to have more options in alternative communication.

So for many resasons, reading is a good idea. At Downs ed, they start work with reading at a young age, as soon as the child knows:
How to play a 4-card lotto game
Recognizes about 50 spoken words. He need not say them. If he can point to the correct item/picture when asked “Where is…?”, he knows the word.

Another point about non-verbal children:
DO find some method of communication for them, be it signing, communication boards, or what ever. Besides allowing communication (lowering everyone's frustrations), it is the best way to teach the child that COMMUNICATION works, helps, and is worth working for. It may be the push the child needs to actively work to learn to speak.

Dieting on Remote Doesn’t Work

I was doing OK on my diet. Slipping up here and there, but basically doing fine, and slowly losing. Well, this week I won’t lose. No, I didn’t dig into so much terrible stuff. But I did loose the sense of “watching”. That is enough, on its own, to ruin things.
I suddenly realized that even though I am (mostly) eating the proper things, I am consuming too many portions. Not from malicious intent, but just from not paying attention. I’ve been busy with too many other things, and slowly, stealthily, the evil inclination showed up with an extra serving here, a nibble of candy there, and suddenly my eating was already not in control.
“Well, as long as the candle burns, it is possible to fix shoes!” (A saying implying that as long as a person is alive, he can rectify himself.)

Updates

Ricki finally returned to school this morning, although she is still limping a bit. She sort of wanted to stay home (a first for her), but I reminded her that her friends will be talking about Purim plans, and she better go if she doesn’t want to get left out.
And my son, David, headed back early to his base. He has a bad cold, and has to see the doctor at the regional area base. I hope they don’t have him crawling through the mud as part of his basic training, or he will likely get pneumonia. I told him that if the doctor declares him fit today, and he still feels bad tomorrow, he should check with the doctor again. A cold leading into an infection can look rather passé one day, and be a full-blown fever the next….....
On Saturday morning David and I were talking about all the instructions that he, as a new soldier, gets as he leaves the base. (Like not to hitch-hike.) I was trying to impress to his younger brother that not only is hitch-hiking dangerous, but also the picking up of hitch-hikers! David mentioned that he was sure that they were going to try and call him up in a silent call-up over Shabbat, as part of his training : “I could see the glint in her eyes as she reminded us of the possibility…..”
At that point I told him that there HAD been a LLLOOONNNGGG ringing of the phone at 1:00 am, but that of course we could not know what it was, as we do not pick the phone up over Friday evening till Saturday sundown. I guess there is more than one advantage to being a Shabbas observer…..