Wednesday, February 28, 2007
Tuesday, February 27, 2007
Greeting and Blessing,
This is in reply to your letter of Aug. 9, in which you ask for my views on "the care and education of Jewish retarded children," outlining some of the problems connected therewith and prevailing policies, etc.
I must first of all, make one essential observation, namely, that while the above heading places all the retarded in one group, it would be a gross fallacy to come up with any rules to be applied to all of them as a group. For if any child requires an individual evaluation and approach in order to achieve the utmost in his or her development, how much more so in the case of the handicapped.
Since the above is so obvious, I assume that you have in mind the most general guidelines, with a wide range of flexibility allowing for the necessary individual approach in each case. All the more so, since, sad to say, our present society is poorly equipped in terms of manpower and financial resources to afford an adequate personal approach to each handicapped boy and girl. Even more regrettable is the fact that little attention (at any rate, little in relation to the importance of the problem) is given to this situation, and consequently little is done to mobilize more adequate resources to deal with the problem.
Now, with regard to general guidelines, I would suggest the following:
1. The social worker, or teacher, and anyone dealing with retarded individuals should start from the basic premise that the retardation is in each case only a temporary handicap, and that in due course it could certainly be improved, and even improved substantially. This approach should be taken regardless of the pronouncements or prognosis of specialists in the field. The reason for this approach is, first of all, that it is a precondition for greater success in dealing with the retarded.
Besides, considering the enormous strides that have been made in medical science, human knowledge, methodology and know-how, there is no doubt that in this area, too, there will be far-reaching developments. Thus, the very confidence that such progress is in the realm of possibility, will inspire greater enthusiasm in this work, and hopefully will also stimulate more intensive research.
2. Just as the said approach is important from the viewpoint of and for the worker and educator, so it is important that the trainees themselves should be encouraged - both by word and the manner of their training - to feel confident that they are not, G-d forbid, "cases," much less unfortunate or hopeless cases, that their difficulty is considered, as above, only temporary, and that with a concerted effort of instructor and trainee the desired improvement could be speeded and enhanced.
3. Needless to say, care should be taken not to exaggerate expectations through far-fetched promises, for false hopes inevitably result in deep disenchantment, loss of credibility and other undesirable effects. However, a way can surely be found to avoid raising false hopes, yet giving guarded encouragement.
4. Part of the above approach which, as far as I know has not been used before, is to involve some of the trainees in some form of leadership, such as captains of teams, group leaders, and the like, without arousing the jealousy of the others. The latter could be avoided by making such selections on the basis of seniority, special achievement, exemplary conduct, etc.
5. With regard to the efforts which have been made in recent years to create "group homes" for retarded individuals, which, as you say, has been a source of controversy - it is to be expected that, as in most things in our imperfect world, there are pros and cons. However, I believe that the approach should be the same as in the case of all pupils or students who spend part of their time in group environments - school, dormitory, summer camp, etc., and part of their time in the midst of their families, whether every day, or on weekends, etc. Only by individual approach and evaluation can it be determined which individual fits into which category.
6. There is surely no need to emphasize at length that, as in all cases involving Jews, their specific Jewish needs must be taken into account. This is particularly true in the case of retarded Jewish children, yet all too often disregarded. There is unfortunately a prevalent misconception that since you are dealing with retarded children, having more limited capabilities, they should not be "burdened" with Jewish education on top of their general education, so as not to overtax them. In my opinion this is a fallacious and detrimental attitude, especially in light of what has been said above about the need to avoid impressing the child with his handicap.
Be it remembered that a child coming from a Jewish home probably has brothers and sisters, or cousins and friends, who receive a Jewish education and are exposed to Jewish observances. Even in the American society, where observant Jews are not in the majority, there is always some measure of Jewish experience, or Jewish angle, in the child's background. Now therefore, if the retarded child sees or feels that he has been singled out and removed from that experience, or when he will eventually find out that he Jewish, yet deprived of his Jewish identity and heritage - it is very likely to cause irreparable damage to him.
On the other hand, if the child is involved in Jewish education and activities - and not in some general and peripheral way, but in a regular and tangible way, such as in the actual performance of Mitzvos, customs and traditions, it would give him a sense of belonging and attachment, and a firm anchorage to hold on to, whether consciously or subconsciously. Eventually even a subconscious feeling of inner security would pass into the conscious state, especially if the teacher will endeavor to cultivate and fortify this feeling.
I am, of course, aware of the arguments that may be put forth in regard to this idea, namely, that it would require additional funding, qualified personnel, etc., not readily available at present. To be sure, these are arguments that have a basis in fact as things now stand.
However, the real problem is not so much the lack of resources as the prevailing attitude that considers the Jewish angle as of secondary importance, or less; consequently the effort to remedy the situation is commensurate, resulting in a self-fulfilling prophecy. The truth of the matter is that if the importance of it would be seen in its true light - that it is an essential factor in the development of the retarded Jewish child, in addition to our elementary obligation to all Jewish children without exception, the results would be quite different.
Perhaps all the aforesaid is not what you had in mind in soliciting views on "group homes." Nevertheless, I was impelled to dwell on the subject at some length, not only because it had to be said, but also because it may serve as a basis for solving the controversy surrounding the creation of "group homes" for those children who are presently placed in an environment often quite distant from the individual's home and community, to paraphrase your statement.
Monday, February 26, 2007
Between 5 pm yesterday and 12:30pm today we have accumulated 130 hits! I would like to take this opportunity to thank all of our dear friends and family for continuously checking up on us - it warms our hearts and we thank you.
Between then and now we have some wonderful developments.
Before I tell you about them I would like to suggest that these developments are so monumental because he's so young and he's just beginning to learn. Soon however, his steps will seem smaller simply because that's the way life goes.
Anyways last night Mendele's mommy tugged gently at Mendele's arms extending them forward, away from his body - this is one of the standard exercises we do several times a day. this time Mendele responded by flexing his muscles and sitting up, lifting his body off of the bed. We were so excited we made him do this four or five times consecutively. But after that the hard work of supporting his head tired him and he couldn't do it anymore.
Later Mendele's Tatty placed the red ring they always play with on Mendele's chest and lo and behold Mendele started playing with it on his own! He even got a good grip on once or twice.
This morning Mendele was read to from the "tales of Tzaddikim" stories. He was quite taken by the pictures and enjoyed the story immensely.
Again thank you all for caring so much- it means a lot to us.
Sunday, February 25, 2007
This Shabbos Mendele went with his parents to his aunt and uncle's house. There he made many instant friends. Although he spent most of the day sleeping - it was Shabbos after all - he spent the rest of the day eating!
Since Mendele came home his doctor - Dr. Rosen - has been watching his weight carefully. Mendele was born at an even seven pounds and over his stay at the hospital (he took a while to recover from a complicated birth) he gained twelve ounces. However when we brought him in to get weighed two weeks later he had lost a couple ounces of weight!
The doctor put us on a rigorous feeding schedule and before long Mendele was back to 7.12. by the next week he was up to 7.14, this past Tuesday he made it to eight pounds!
While Dr. Rosen knows that Mendele is gaining he is still concerned, because the rate at which he is gaining is very slow - oprx. half an ounce a day.
We got worried too (which is the suggested path when the doctor is worried). So we called our family's lactation specialist and she calmed our young hearts saying (and I'll break it down for you)
a. Formula fed babies grow at a rate of 1 ounce per day. Breast-fed babies grow at a rate of 1/2 an ounce per day. This means that Mendele's growth rate is normal B"H!
b. There s nothing you can do to make your milk stronger. By the same token, even if a mother lived on potato chips and coke, as long as there is milk the baby would still get the nutrients it needs. The healthy eating that doctors suggest is meant to keep the mommy healthier!
So after some stuff has been said and done - Mendele is good and healthy - boruch Hashem!!
Thursday, February 22, 2007
I refer to you all as such for dear friends you truly are to us. Without you we would have been lost.
We are both from very large families. Despite the rule that every family has its ‘package’ our families were spared, by the grace of G-D, from any children with special needs. Thus, when our Mendele was diagnosed with Downs Syndrome we were lost, hurt, even offended that G-d hadn’t made our child perfect.
It took us some three weeks to let the secret out. We didn’t want our family and friends to see our disgrace but we knew how hurt they would be if they were told our secret by anyone else. Carefully, quietly and hoping no one would notice we whispered to our brothers and sisters that we had been blessed with a special child.
Well, whispering didn’t work. Our hopes of secrecy were shattered. Within days the entire community knew. We etched frozen smiles on our faces for inwardly we were in turmoil…
Suddenly, there you were, dear friends, fellow parents of special children, to guide and comfort us and help us cross over the bridge into our child’s the special world. You were there to help us see that our Mendele is perfect; exactly the way G-D wants him to be.
One wonderful new friend, an extraordinary mother of a special child told us that people often become condescending towards these children, as though they are, sadly, inferior. When they do she always tells them the following mashal as taught by Rabbi Nachman of Breslau:
Once upon a time there was a great king who lived in a palace. This king had a very close friend and advisor whom he kept close to him always.
One day the adviser said to the king, "Your Royal Highness, I have terrible news. I have just received word that this year's grain has a strange poison in it and anyone who eats from it will become... crazy!"
"What should we do?" asked the king. "Without the grain we can't survive, but if we eat those grains, even for our survival we will all become crazy!"
The king was distressed but the adviser had already made a plan.
"Your Majesty," he said, "Let the entire kingdom eat from the new grain. After all, going mad is better than starving to death. However, you and I shall put away some of last years grain and use only that for our sustenance until next years crop is harvested."
The king sat quietly and considered this advice. He slowly shook his head and to the dismay of his adviser said, "This plan will not do. If everyone in the kingdom is crazy besides us, everyone else will think that we are the crazy ones. No, we must commit ourselves to share the fate of the people."
"Then perhaps," ventured the adviser, "Perhaps we should also eat the new wheat but we should make a special mark on ourselves to remind us that we are not normal."
And so it was, before the king and his adviser ate from the grain they changed the way they looked so that they might never forget that they and all the people around them are not quite as they should be.
The lesson, this dear mother explained to us, is that our world is full of terrible attributes such as hate, jealousy and anger. However, these special children, those blessed with DS, have no concept of hate, jealousy or anger. All of these crazy, destructive attributes are only granted to us "normal" people.
You see, our children have not eaten from the "new grain". In fact, if you look carefully you can see that we do look different than them!!
a. Mendele's Tatty taught him to grasp things with his hands. This is done by placing something graspable inside his hand and curling his fingers around it. When Mendele was able enough to pull the object out of his Tatty's loose grip we moved on to the next hand and did the same thing again.
Then Mendele's Tatty put a ring (2" r.) into one hand and then brought the other hand to the ring and Mendele grasped it. He laid there tugging with both hands until finally the right hand pulled the ring from the left hand's grip.
b. After incessant cooing by Mendele's Mommy, Mendele responded with an Ooooh!!!!! That's great news!!
Enjoy the pics.
Note: The average child on his own, will start gurgling, grabbing on to things and moving on his own. Children with DS need to be taught to do these things. (B"H Mendele is a real fighter and already began doing many things on his own)
Because children with DS have low muscle tone we have to constantly stimulate Mendele, to help strengthen his muscles. Nursing is the best the speech therapy.
Talking to the baby is also vital for his learning to react and talk back. So, a typical diaper change is like this: "Mendele, now Mommy is unbuttoning your stretchie. Now I'm taking your left foot out, now your right foot. These 3 snaps are opening your undershirt. Now Mommy is opening your diaper. Oh, @*#@! Mommy is closing you diaper now!!" etc. You can imagine why we keep water bottles all over the house;)
Moving his hands and feet, getting him to grasp onto things with his hands, making sounds like "Oooooh, Oooooh" for Mendel to copy, and showing him colorful pictures are a few of the things that keeps his Mommy and Tatty busy all day.
Even though Mendele loves to sleep, and we certainly enjoy peace and quiet of that time too, we've been advised that the more we keep him awake and stimulated, the greater his achievements will be.
Mendele was lying on his stomach on a baby blanket on the floor. The next thing I knew, his head and hands were off the blanket! Had I not put him back, he would have inched his way off the entire blanket!
Mendele loves to lift his head and look around. When he spots something, he opens his big blue eyes and gazes at it for long periods of time.
Wednesday, February 21, 2007
(and every other shlucha that would like to read this)
Mazel tov, mazel tov. I obviously don't have any direct horaos from the Rebbe, (my daughter is only 3.5) but I'd love to share some chizuk. I can clearly remember the shock and sadness that of course my husband and I felt, but also all my siblings, parents and in-laws. So I know how you feel, but I also wish I can share with you the reality of a child with DS to ease your heart.
For as long as I can remember, I feared having a child with DS and always thought it was the worst thing that can happen to a family. with each child that was born, i breathed a sigh of relief when I saw their "typical faces".
Imagine my reaction when number 9 popped out and stared at me with her "exotic features!" (Til today, I call her my exotic beauty....and beautiful she is!)
All those fears came gushing at me, but strangely I was overcome with intense overprotectiveness and terrible sadness for the difficulties I thought she would encounter.
My logic reminded me of all the facts (fiction?) I knew and overwhelmed me. But, something else entirely was transpiring. My baby girl was shining, and speaking to me, neshoma to neshoma, "Mommy, don't worry, everything will be ok."
I was so overcome with emotion that the only time I felt calm was when I was in the presence of my baby. I found myself in the nursery just standing over her bascinet.
When I was able to bring her home, 1 week later, I felt like I was bringing a Torah into my home. She shone, and lit up her surroundings. I don't say that lightly, because remember I already had 8 other "lights" in my house. So how bright she had to be to actually show up in a very well lit home.
Surrounded by family and friends we moved through the first few weeks from ignorance, fear, unknown, to a world of love, clarity, possibility and blessing. I devoured all the information I could gather, set in motion early intervention therapies, showed her off wherever I could and felt an amazing sense of pride that I was blessed with this child.
Not all of it was explicable, but I just felt that she was a tremendous brocha to my family and community. I slowly was able to relinquish all the preconcieved notions that I had of people with Down Syndrome and allow my beautiful daughter to define herself.
Early on someone gave me a few back issues of a magazine call "down syndrome amongst us" and I highly recommend it to you and your family, I also saw a letter that the Rebbe wrote in the 1970's to a doctor about the Jewish approach to the mentally challenged, and it is an amazing letter! I used the directives to decide what kind of therapists should work with my daughter, and in general it guided our approach that we will not set limitations on her. I will try to locate the letter. (if someone else has it please post.) In a haora in sefer hasichos the Rebbe writes that "Special Children is not just a euphimism but actually is because of "special kochos"...which I am sure you feel when you are in the presence of your new family addition.
My daughter Brocha, truly has been a brocha, besides being absolutely adorable, she is also in good health, attends our preschool, is the center of attention at our chabad house, a favorite amongst her siblings,grandparents, aunts, uncles, and cousins and has settled into being a typical mischievous 3 year old. She has better behaviors then any of my kids ever had (with therapists teaching her how to eat with utensils, to always clean up after herself, throw her clothes in the hamper, dress herself....where were these therapists when my older kids were growing up?)
So I really can only conclude with wishing you Mazel tov, mazel tov! You are in for the trip of a lifetime. A trip none of us volunteer for, but I for one thank Hashem everyday for sending me my Brocha, I don't quite know what I would do without her! She has singlehandedly changed my life for the better, walked me into a world I never knew existed and what a bright, and light world it is.
(I think this lettter was writen by a Mrs. Kraznijansky- If you know, please fill it in.)
Tuesday, February 20, 2007
In the meantime, here in Cleveland Mendele's grandparents and cousins are having a great time getting to know him. He's been behaving pretty well for us too and we even got a half a smile from him!
Monday, February 19, 2007
Hearing something shocking about someone always seems worse than it is until you hear it from its source. And then it's usually calming to know that what you heard is not as bad as people make it sound.
If you would meet Mendel in person will see that he is a normal baby like any other. He needs to be fed, changed and loved.
The hardest part for friends and family is not knowing how to respond to such news. B"H we are coping. We don't walk around all day feeling sad or bad. We have a healthy baby who is KA"H very cute and lovable.
Down Syndrome today is almost like having a bad cold that needs constant tending to, tea and herbs and tissues etc. it just takes a bit more work.
All the people we've spoken to have told us that thier children with Downs are a joy to thier family and only brings smiles to those around them. Mendele has so far been just that!
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans - the coliseum, the Michelangelo David and the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands and the stewardess comes in and says, "Welcome to Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved.
are proud to present to you, Mendele Friedman...
a favorite among the cousinesses
who "sleeps and lets sleep" ka"h....
and who otherwise is a delightfull child, boruch Hashem!