Dsau magazine issue 18 2015 by Ami Magazine

ISSUE 18 . 2015

1 ISSUE 18 . 2015

! "

ISSUE 18 . 2015

4 Open Forum 5 6

Editor’s Message Mailbag

Did You Know? 9 Family Care 14 Shutting Down the Extra Chromosome in DS Cells

Features 17

In Search Of A Challenge-Free Life 19 The Chessed of Down Syndrome 23 Mothering a Special Child 46 Up Syndrome

Poetic License 26 Life’s Unspoken Bargains 30 Come Touch His Cheek

Down Syndrome Amongst Us

Grandparents' Page

CONTENTS

32 Schwimmer Family

Perspectives 34 Freedom

Exploring Disabilities 36 Living With Leukodystrophy

Sibs' Niche' 40 41 43 43 44

The Garden of Life ‫ הקב“ה‘ס‬Violin Chumy Different My Little Teddy Bear

Please Mail All Correspondence To: Down Syndrome Amongst Us 32 Rutledge Street Brooklyn, NY 11249 Email: downsyndrome@earthlink.net To purchase back issues of DSAU, kindly email: dowsnydrome@earthlink.net Please contact the editor for permission to reprint anything in this issue. Can be purchased individually for $5.00

Design: nettiesander@aol.com

Our website www.dsau.org is under construction. Please visit it at the end of July upon completion

n the spirit of the wandering Jew I embrace my new placement within the AMI magazine reading packet. I am grateful to AMI for the warm welcome and sensitivity they have exercised in accepting Down Syndrome Amongst Us as an insert within their reading packet. This is a great boon for my publication; it translates into grand publicity and coverage and lots of energy.

ISSUE 18 . 2015

I am joining AMI the week of July 4th; the symbolism should not get lost on anybody. We, the families of special needs children in particular, have much to be grateful for to our Malchus Shel Chessed. Just browsing through this magazine one can see the ads of agencies and medical institutions that service our special population, all under the auspices of the United States of America government programs. Since I started publishing Down Syndrome Amongst Us in 1995 I have received countless letters from around the world from family members of individuals with Down syndrome decrying the lack of services in their countries. It is both heart-rending and appalling to note the blatant negligence on the part of some foreign governments in acknowledging the existence and needs of their special citizens. Down Syndrome Amongst Us lauds our land of democracy and benevolence. The feature ‘Exploring Different Disabilities’ which was introduced in Issue #17 caused quite a stir. I received considerable feedback and requests. Unfortunately, I have not been able to meet many of those requests because they were anonymous. I understand and respect people’s need for privacy, but I cannot run a database on special needs. I have been asked to write about varying disabilities, all anonymously, in the hopes that people with matching disabilities will come forward and matches can be found. That was not the purpose of this new column. The function of this column is to spread awareness and education. Simultaneously, if a family feels that they have found a match then it is a reaped benefit of this column, but not the sole purpose. For those readers who are not willing to share their names, stories and pictures, but who are looking for matches, I suggest you contact NORD – National Organization for Rare Disorders. The matches they suggest might not be the heimish Jewish family you are looking for within the pages of DSAU, but it’s the best I can offer. So enjoy your July 4th weekend and whatever it entails for you, be it traveling, sailing, picnicking, grilling, camping, or just chilling, and bask in the warmth of these pages.

Sarah Sander

OPEN FORUM

Readers worldwide have come to know my magazine. It is my public journal of the joys and struggles of raising our son, Moishey, who has Down syndrome. Feedback from readers is my greatest source of support and I value each communicated morsel of correspondence.

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Mailbag Dear Mrs. Sander, I want to tell you how much I agree with what you wrote about advertisers including the special needs population in their ads. These types of advertisements that were featured in your latest DSAU issue were extremely precious. I hope the businesses will get much positive feedback about them and include such ads in other publications. I plan to call and write these advertisers and thank them.

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Leah Hurwitz

because his little brother got payos and his baby sister started walking almost at the same time. These 2 ‘simchos’ caused lots of attention to be showered upon them and he felt somewhat left out. I am embarrassed to admit that I was having a hard time "loving" him at that time, and cringed when people told me how cute he is. Reading Down Syndrome Amongst Us, including all the back issues you sent me, has started to shift something in me. I feel it is a real eye opener and has given me lots of chizuk. Thank you!

R.A. Canada

Editor’s Note: Thank you, Leah. You were true to your word and several advertisers told me about ‘the lady who called/wrote to thank us for advertising in Down Syndrome Amongst Us’. Dear Sarah:

To Mrs. Sander: I just wanted to share how I feel regarding your magazine. It's professional. It's well researched. It's informative. It's heartwarming. It's phenomenal. And it's so real!

Chaya M.C. Dear Sarah, I started reading all the magazines you sent me and cannot put them down! My 7-year-old son with special needs started to act out and turned very difficult

I have written to you many times in the past about our amazing daughter, Devorah, who has Down syndrome. Just to update you: She is in a great Ohel group home in Brooklyn and now travels to Manhattan every day to two different office jobs on the subway by herself!! She even has to change trains. I could not imagine this at first, but after travel training with someone for six months, she really wanted to do it alone. It has worked out fine. Never would we have imagined 30 years ago that she could do this and many other things that she does. I hope reading about accomplishments like this gives strength to new parents of children with Down syndrome.

Andrea Lieberman

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8 Hi Mrs. Sander: I hope you had a good Yom Tov! Mine was very colorful, spent sitting in the emergency room on Chol Hamoed because my oldest son's foot was swollen and infected. We then had to go back 2 more times for more doses of antibiotics via intravenous. He slept most of the Yom Tov so I could actually have enjoyed the "quiet" and the sedarim, but instead I was sick worrying why he was so sleepy (he was becoming sick as soon as Yom Tov started). Anyway, all is well now but I always have this problem after Yom Tov. What do I answer when people ask me how it was? Should I say, "GREAT"? Let’s not kid ourselves; special children thrive on routine and Yom Tov is not very good for them. On Achron Shel Pesach I said "yay!” but my mother told me that I should only think it and not say it! So when someone asks, “How was Yom Tov?” I will say "Ok" or better yet "It’s good to have Yom Tov and it’s good to get back to routine," and let them understand what they want to understand. All the best,

A Letter With a Title and a Poem: Dear Mrs. Sander, Thank you for producing such a fine publication. I hope this poem isn’t offensive to anyone, but I feel that it’s an important point to make. Thank you and hatzlacha,

A.M. 21st Chromosome, Commercialized The ads peppered through the last DSAU edition Featured youngsters with DS – the ultimate in inclusion But to this consumer-mom of a four-yearold with DS Viewing those few pages elicited some distress ‘Cause in a well-intended effort to affirm “normality” An ironic outcome is achieved: contrived equality

R.R. Editor’s Response: Editor’s Response: Dearest R.R. – I hear you loud and clear. I still remember the days of Moishey’s ‘youth’ and those Yomim Tovim have mixed memories etched in my mind. While most special needs children are ‘creatures of habit’ we must remember that sometimes situations that affect us, really cause the same reaction within the typical population. Any parent of a healthy rowdy bunch of kids will breathe a sigh of relief when Yom Tov is over and life falls back into blessed routine. So, while situations certainly are exacerbated with our kids, it’s not always peaches ‘n cream with normal healthy children either!! Chin up

Thank you for writing. I respect your opinion, but totally disagree with it. READERS: What do you think? Let your opinions be known.

Let's Hear From You Write to: downsyndrome@earthlink.net

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9 Down Syndrome Amongst Us

Family Care Imagine giving your child a multivitamin or any medicine and then having to sign a paper noting what you gave, how much you gave, the doctor that prescribed the medicine or gave the OK to the vitamin, when you started and when you will stop the medicine. Next, you get a call from your Liaison giving you the ok to make a purchase behalf of your child, which will cost over $200. The Service Coordinator that was appointed to you calls to check in on you and then the Nurse calls to schedule a visit. Later in the day, you take your child to the doctor. One of the items in your hand is a doctor’s form the doctor fills out stating why the child was brought, what the findings were, and if the child needs to come back. Towards the end of the day, you make sure to sign off on another paper to show you worked with your child on one of the two or three goals listed on that paper. Then you make sure to wake up your child before you go to sleep in order to perform the monthly fire drill. Some of you are reading this with a smile and nodding your head, knowing exactly what the above scenario is all about. Others are trying to figure out what is going on. For those of you not in the know, welcome to the life of a Family Care Provider. In New York, there is a program called Family Care. This program allows a parent of a child with certain special needs to place

their child with a family that they feel could better take care of their child’s needs. The biological parents still retain full custody of the child. The State calls the child a consumer and the person taking care of the child is called a Provider. In the eyes of the State, the Provider is a full time babysitter for the Consumer. Come and meet a Family Care Provider. To protect the privacy of her consumer, we will call her Shira Cohen and her consumer will be Tova.

Good Morning Mrs. Cohen, could you please tell us what you had to do to become a Family Care Provider? There were a lot of steps. I needed to fill out an application form answering many questions including why I wanted to take a child with special needs into my home. I had to ask three friends to references for me. They had to fill out a paper with various yes or no questions. I needed to give them a copy of my paycheck to show I wasn’t asking to be a Family Care Provider because of the money I would receive. My husband and I had to get fingerprinted and give permission for the agency I was using to do a criminal background check on us. I had to get a physical and a TB shot. My doctor had to sign off that she felt I was capable of taking care of a child with

DID YOU KNOW?

By Basya Tobias

OPEN DID YOUFORUM KNOW?

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special needs. We own our house so we did not need to get permission from our landlord to take in a child with special needs. However, we did need a boiler inspection. The agency provided us with many different trainings, including CPR and basic first aid, training on all the paperwork that needed to be filled out each month once Tova came into our home, a medicine training, and I can not remember what else. The State inspector came into our house to measure that there was enough space to place someone into our house. He also checked that we had fire alarms in certain places throughout the house and fire extinguishers. The water in the bathrooms also had to have a device on it that would stop the water from flowing if it became too hot. The agency bought and put in the needed smoke detectors, fire extinguishers, and antiscold devices that were needed. Every two years when I renew my certification to be a Family Care Provider, I basically have to do all of the above over again.

am sure it was a difficult decision to make.

Can the parents have contact with their child in Family Care? Yes, but it is really up to the parents to decide what type of contact they have. Tova’s parents will come three to four times a year to visit with her. I have one friend who sends pictures and the mother calls on the telephone a lot. Someone once mentioned to me that it is the father who calls and comes to visit the child she took in. Another friend, whom I met through the agency, said that the parents of her consumer have absolutely no contact with her child. I’ve even heard of parent’s that change their child’s last name so no one would connect the child to them. I guess it really depends on the person and the situation. One thing I have learned is that we can not judge a biological parent for what they decide to do.

What made you decide to become a Family Care Provider?

How does having Tova affect your family?

I had always wanted to take in a child for foster care. Then one day I saw an advertisement in my local weekly community advertisement booklet that a certain agency was looking for a family to take in a boy with special needs. I called up and it seems they had a few responses. In the end the child went to another family. In the meantime, I got certified. A few months later, I got a call if I was still interested in taking in a child with special needs. I said yes and was told they would give my name and a few other names to a couple that were looking to place their daughter with Down syndrome. A friend called me that they had called her as a reference. I guess they liked what they heard, because they decided to place her with us. Now we have our Tova!

My children were thrilled to pieces. I spoke with them first about it when I saw that advertisement. I wouldn’t have done it if any of my children were against the idea. Tova is 100% part of the family. When we go on trips, she goes with us. She gets dressed up for family chassanahs and takes pictures with the family. My parents and inlaws always remember her birthday and will buy her something special for it. I think my children have become more chessed oriented and sensitive to other people as a result of having Tova around.

Why did the parents place their child in Family Care? I really don’t know. I never asked. I didn’t think it was my business. However, I

What does Tova call you and her parents? Tova calls me mommy because that is what I am to her. She also calls her mother mommy because she is her mother. People ask me if she is confused. I usually answer that it is no different than my daughters calling my mother and mother-in-law Bubby,

What are your school options? There are actually a lot. The basic is public school, which few people send to. Then there is a Bi-Y program within the public school. This means the child with special needs is in a bilingual Yiddish program. I am not sure exactly if the child or family really has to speak Yiddish. However, this is a program through the public school where Jewish children are basically in an all Jewish class with frum teachers. The only drawback is that they are not supposed to daven or learn any yiddishkeit, unless it is done in a way where it is teaching it as a Jewish culture. There are a few classes in this program which recently opened in my area. Then there is a special-education school that is Orthodox where children do daven and learn alef-beis and brachos along with receiving a secular education. However, this place is very expensive. I think most people are on scholarships there or are funded from the public school. I don’t know too much about it.

So where is Tova? Interestingly enough, she is in the school where my daughters go. I once went to PTA and was joking to the principal that I was sending Tova to the school. She saw I was joking and asked me why I was joking. She told me it would be a big zechus for

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them to have Tova. I spoke to my husband and we took her up on her offer. She has definitely gained from being around regular ed. children. It seems that the girls in her class have gained a lot as well. I often have mothers (from Tova’s class and other grades) telling me how their daughters come home talking about Tova. I always feel good when a parent tells me how happy she is that Tova is in the school. Sometimes I will even ask the person to mention it to the administration. As great as they are with it, it can only help that they hear positive feedback from the parent body.

Getting back to Family Care information, I understand there is a lot of paperwork involve. There is a tremendous amount of paperwork. The State views us Providers as a babysitter. Overall, it does not bother me. However, it is something a person has to keep on top of. If a doctor says to come back in three months, you really have to. The State sends inspectors once a year to look at my books and every other year I recertify. During the recertification, two people come and check that all my doctor visits are up to date. The agency had once told over at a yearly training that one of the inspectors said that if a child does not get the annual physical exactly a year later, she would put in a claim of child neglect! Luckily, that person is not around anymore. However, each inspector has their thing they want done their way. The agency usually handles it and then tells me anything I need to know. There are also a few trainings or meetings I need to attend each year. It might not be paperwork, but it is also important and could affect my certification if I do not do it.

I assume you get paid for this? Yes. I get a monthly check that is tax free. For me it works out well, because Tova has her own teacher who teaches her when learning would be best one-on-one for Tova. She also makes sure Tova is in the classroom for anything that woud be appropriate for

DID YOU KNOW?

as well as the mother’s of my friends. Mommy is just a title to me. Tova knows I am the one to go to if she is sad, needs a hug, or anything else. Her biological mother is a very warm person and Tova can feel her love. She spoils her when she visits and gives over her love for Tova when she speaks with her on the telephone. What’s wrong with a person having a lot of people to be loved by? That being said, I think it is really up to the biological parents to decide what they want to be called. I’ve heard about one couple who wanted their child to call them Bubby and Zeidy since they were that age and felt the people taking care of their child were the “Mommy” and “Tatty”.

OPEN FORUM

Is there anything thing else you want to tell over? I am amazed at how things have changed over the years from children with special needs being hidden to their inclusion in regular life. I think the next big step would be to find ways for the children with special needs to become more involved in our community. I think there should be self-contained classrooms in every school so parents/providers do not have to send their child away to a public school or separate special

I would also like to see them working in the schools and local stores. Although computers have taken away many of the jobs a person with special needs would have done, there is still things that they could do. An open-mindedness to the various possibilities would be great. I definitely recommend being a Family Care provider. My first babysitter for Tova had told me that she had never thought she could take care of another person’s child until she took in Tova. Interestingly enough, at one point she wasn’t feeling well. She went to a training at the agency I got Tova from. The nurse at the training was talking about thyroid issues. She went to her doctor and asked him to check her thyroid. It turned out that it was working too slow and that was why she wasn’t feeling well. Taking in Tova to watch ended up helping herself in the end! I know my family has definitely gained in so many ways because of Tova. Thank you very much and hatzlacha!

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ed school. A school is a mini community and these children are apart of our community. A teacher at my daughter’s school once told a concerned parent that heard Tova was going to be going to the school that we teach our children about chessed. Now that it is coming to them, should the chance be pushed away? I’ve seen a school in Far Rockaway that took in children with special needs. There were self-contained classes for some children and others were in the actual classroom. Picture a boy with autism or blind in a classroom with an aide. This is what that school did and they had an amazing name in the community and beyond. You don’t need a “special education degree” to teach special needs children. You only need an open heart and a will to look into how the child could best be mainstreamed. No parent given a child with special needs had a special degree in being a parent of such a child. Hashem gave the parent the child and the parent then becomes informed and makes decisions on what the parent feels is best for the child. Teachers and schools also needs to be flexible and look for what will work for the students under their care.

DID YOU KNOW?

her to be in the classroom for. Right now she is included in half the classroom time, not counting lunch and recess. The check almost covers her tuition and the teacher’s salary. Then there is a check twice a year called vacation pay. I can do whatever I want with the check. I can go on a vacation without Tova and pay someone to watch her. I can take Tova with me on my vacation or I can stay home and not go on a vacation. Then Tova has her own allowance money that she gets every month. This money has to be spent on whatever she wants. She can go to the pizza store or buy toys and books. It’s really up to her. When she was younger, I would usually choose for her the things I thought she would enjoy. Anything over a certain amount needs approval from the agency. Unless we have the approval for her to save money for something, she can not have money over a certain amount lying around. It has to get spent. I also get money twice a year to spend on clothing for her. Usually it will get spent on a Shabbos outfit and one pair of shoes. However, she can then use her monthly allowance to get more clothes or shoes. She’s at a stage where she has pretty much stopped growing, so some of her clothes are already two years old. Because she is in Family Care, she also gets Food Stamps. I had once called up and asked if I could use it for the family or if it needed to be labeled just for her use. The person I spoke to told me the family could use it, so there is that amount as well. She basically gets breakfast and lunch at school. I serve her supper. If I wanted to, I could send her to the after school Respite program. She would get supper there, but as of now, I don’t have the need for it. She has my children to play with.

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14 Down Syndrome Amongst Us

OPEN DID YOUFORUM KNOW?

Shutting Down the Extra Chromosome in Down Syndrome Cells By Ed Yong

Many genetic disorders are caused

by faulty versions of a single gene. In the last decade, scientists have made tremendous strides in correcting these faults through “gene therapy”—using viruses to sneak in working versions of the affected genes. But some disorders pose greater challenges. Down syndrome, for example, happens when people are born with three copies of the 21st chromosome, rather than the usual two. This condition, called trisomy, leads to hundreds of abnormally active genes rather than just one. You cannot address it by correcting a single gene. You’d need a way of shutting down an entire chromosome. But half of us do that already. Women are masters of chromosomal silencing. Women are born with two copies of the X chromosome, while men have just one. This double dose of X-linked genes might cause problems, so women inactivate one copy of X in each cell.

This is the work of a gene called XIST (pronounced “exist”). It produces a large piece of RNA (a molecule closely related to DNA) that coats one of the two X chromosomes and condenses it into a dense, inaccessible bundle. It’s like crunching up a book’s pages to make them unreadable and useless. XIST exists on the X chromosome, so that’s what it silences. But it should be able to shut down other chromosomes too, if we could just insert it into the right place. That’s exactly what Jun Jiang from the University of Massachusetts Medical School has done: she used XIST to shut down chromosome 21. “Most genetic diseases are caused by one gene, and gene therapies correct that gene,” says Jeanne Lawrence, who led the study. “In this case, we show that you can manipulate one gene and correct hundreds.” It’s chromosome therapy, rather than gene therapy. So far, the team have only done this in Down syndrome cells, grown in a laboratory, so the technique is a very long way from any

High-risk, high-reward: Lawrence has spent years studying XIST, and has always thought about applying this work to Down syndrome. After all, she used to provide counselling for parents whose babies are born with disabilities, and she regularly talks to families who are affected by Down’s, some of whom talk at the genetics course she runs. But while using XIST to inactivate chromosome 21 was an obvious strategy, it was also a risky one. For a start, XIST is huge—far larger than any other gene that has been deliberately inserted into a genome before. If the team got it into the right place, would it actually silence chromosome 21 without killing the cell? And if it worked, what would stop it from silencing all three copies rather than just one? “None of these challenges made the project impossible, but collectively they made it pretty improbable,” says Lawrence. “We didn’t know if we’d spend years not getting anything to work.” And yet, after six years of toil, it worked. Jiang used enzymes called zinc finger nucleases, which cut DNA at very specific points, to smuggle the giant XIST gene into a pre-defined spot on the 21st chromosome. She did this in cells from a boy with Down syndrome, which had been reprogrammed into a stem cell-like state. XIST did its thing, “painting” one of the three chromosome21s, and condensing it into a tight bundle. The genes on that copy were almost totally inactivated. In this study, Jiang ensured that XIST only shut down one of the three chromosomes by tweaking its concentration. In the future, the

But does inactivating a copy of chromosome 21 achieve anything useful? Jiang saw some promising signs. For example, after XIST, the Down’s cells grew more quickly, produced larger colonies, and were far better at dividing into neuron-making cells. This supports the idea that people with Down syndrome can’t make enough cells (and neurons, in particular) as they grow up.

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team might target it to sequences found in only one of the three copies.

Benefits: “It’s an extremely exciting development. It’s somewhat surprising that it took so long for someone to apply this to chromosome 21, but the group had to overcome some very significant technical challenges,” says Roger Reeves from Johns Hopkins University. “The next step will be to silence an extra chromosome in an animal, as opposed to a dish of cells.” For example, they could try the technique on mice that have been bred with extra copies of chromosome 21. Even if that worked, it would be very challenging to use the XIST technique in people—you’d need to get the giant gene into the right cells at the right stage. “I doubt that XIST by itself has the potential to become a therapeutic agent in patients,” says Stylianos Antonarakis from the University of Geneva. Lawrence agrees, but she thinks there might be exceptions. For example, many children with Down’s develop myoproliferative disease, where they produce too many blood cells and run a high risk of leukemia. If doctors saw kids with this condition, it might be possible to activate XIST in their blood stem cells, to prevent them from developing cancer. “That’s one of the more likely possible uses,” says Lawrence. The study also has more immediate benefits: “It’s a way of getting at the biology that underlies the different aspects of Down’s,” says Lawrence. The syndrome includes dozens of symptoms across many different organs, including intellectual

DID YOU KNOW?

clinical use. But it’s a promising first step, and other scientists are very excited. “It’s an amazing paper,” says Elizabeth Fisher from University College London, who studies Down syndrome. “The fact that they have silenced the entire chromosome will really help people to dissect what’s going wrong in Down syndrome.”

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OPEN DID YOUFORUM KNOW?

disabilities, heart problems, leukemia and Alzheimer’s at an early age. Matching these up to the hundreds of genes on chromosome 21 has been a herculean task. “There are many studies that point to different genes but it’s still a pretty confused field,” says Lawrence. Her team’s work could help. Scientists could activate XIST in one of two groups of identical cells, and watch what happens to the rest of their genes. They could do this in neurons, heart cells, or any of the other tissues that are affected in Down syndrome. They could also test drugs that are designed to alleviate the syndrome’s symptoms. And, as Antonarakis says, scientists could do this not just for Down syndrome, but for the many other disorders that are caused by unusual number of chromosomes. Jiang’s work also confirms something important about XIST—it evolved to shut down the X chromosome, but it works on all of them. “It must be acting on something that’s found on all chromosomes,” says Lawrence. She thinks it might recognise repetitive bits of DNA that are found throughout our genome, but have no obvious purpose.

“

Indeed, Lawrence suspects that her work on XIST and Down’s might eventually tell us more about how the genome is

organised. XIST is one of several pieces of RNA that are transcribed from the genome, but never used to make proteins. Because of its large size, it’s classified as a “long, noncoding RNA” or lncRNA—a group that includes tens of thousands of members. A minority of these, like XIST, clearly help to control how other genes are used, but there’s a lot of debate about what the rest do, if anything (see Carl Zimmer’s post for more). Lawrence’s team have moved beyond this debate, and are one of the first to actually use a lncRNA to target and silence a set of genes. “That’s one of the aspects that makes it so exciting,” says Mitchell Guttman from the California Institute of Technology, who studies lncRNA and recently showed how XIST finds its way around the X chromosome. “The field will surely build upon this in the future as it continues to dissect the roles of other lncRNAs and learns more about the principles governing their localization and function.” Reprinted with Permission from National Geographic

Reference: Jiang, Jing, Cost, Chiang, Kolpa, Cotton, Carone, Carone, Shivak, Guschin, Pearl, Rebar, Byron, Gregory, Brown, Urnov, Hall & Lawrence. 2013. Translating dosage compensation to trisomy 21. Nature

I am careful not to confuse excellence with perfection. Excellent, I can reach for; perfection is G-d’s business”

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17 Down Syndrome Amongst Us

In Search of a Challenge-Free Life By Sarah Sander were attending our yeshiva’s annual Shabbaton at an upstate hotel, minding our own business and enjoying the nachas that was warming our hearts. Yeshiva Bonim Lamokom Zichron Moshe Dov had been a mere dream many years back, with even the most seasoned special educators doubting its ability to be. Siyata Dishmaya has already led us into the 14th year of our yeshiva B’H. So there we were, basking in the glory of watching the 50 plus talmidim singing Shabbos zemiros, darshening Dvar Torahs, badchening ‘Up Syndromes’ and shining with joy as their Rabbeim dutifully and devotedly tended to each talmid’s every need. A gentleman, a general guest of the hotel, sidled up to my husband and asked whether he can speak privately to him. The middle-aged fellow then proceeded to tell a tale of hair-raising dramatics and pain. Almost two decades ago, his wife gave birth to a baby – a son with Down syndrome. While he, the father, tried to deal with the shock to the best of

his ability, his wife’s reaction was fierce – she wanted to have nothing to do with the new baby and wanted him out of her sight, mind and life! There was no negotiating, reasoning, cajoling, nor persuading her. Her mind was made up and there was no going anywhere else. Arrangements were made and the baby was quickly placed with adoptive parents and the case was closed. The siblings at home were told that the new baby had died and life resumed normally. At least it appeared so. The new father was devastated and his thoughts were never farther than a heartbeat away from his child… his child who was out there somewhere, being taken care of by its new anonymous parents. Any time he made mere mention of the baby,

FEATURES

ISSUE 18 . 2015

his wife flew off the handle and forbade him to broach the topic ever again. After a while, he stopped attempting and just carried the pain with him wherever he went. A couple of years later, they had a baby girl, their youngest child. As she was being raised, the torment did not let up for this father. The years moved slowly and painfully. The older children got married, grandchildren were born, simchos were celebrated, but the weight on his heart never lightened. Shortly after the youngest child got married, this heartbroken man sat down with his wife and laid out an ultimatum for her: he was going to find his son, no matter what! Even if it spelled a divorce in their middle years, he was ready to risk it. He couldn’t continue living this farce as though everything in their lives was just swell. His wife acquiesced and thus started the search for his beloved son. Considering the difficulty of getting any information on adoption cases that were closed, this gentleman encountered tremendous siyata dishmaya in his quest and was finally able to find his son. He visits with him weekly and cherishes their limited time together. This graying father dabbed at his eyes as he watched the Bonim Lamokom boys break out in dance and heaved heavily as he finished his tale of woe. He told my husband the following: What was the gain here? Did my wife think she could outsmart the Ribono Shel Olam? She wanted a hassle-free life so she got rid of the challenge? But look what else she threw away at the same time – her shalom bayis, simchas hachayim, menuchas hanefesh, honesty and trust with her other children, and a whole lot more. There was very little my husband was able to say in response to this harrowing tale. On Motzei Shabbos, the yeshiva had a huge Melava Malka, meticulously planned and arranged by our wonderful principal, administrator, secretary and teaching staff. This was the highlight of the weekend! Festive music, sumptuous food, a carnival to boot, star singers and dancing to the sky were the ingredients to this other-worldly event. And again, I stood and kvelled and dabbed at my

eyes from the nachas tears that threatened to make my kids giggle at ‘Look, Mommy is crying again – she’s so emotional’, when I felt a tap on my shoulder. A soft-spoken woman with sad eyes looked at me and said, “My husband spoke to your husband today. Did he tell you? We also had such a child….” and she looked at the jubilant faces of the boys and young adults on the dance floor and her eyes sank deeper and deeper into her face. She then whispered hoarsely, “I guess we didn’t have the zechiya to have this nachas.” I had nothing to add. I patted her on the shoulder, rubbed her back comfortingly and smiled meekly. The following morning, my older kids, who went to sleep extremely late told us that this poor woman was still pacing the corridors at 4:00 a.m. Hashem’s ways are strange. This husband and wife came to a hotel for a weekend of relaxation, never expecting their old wounds to be opened in such a painful and dramatic way and suddenly make them see the light…albeit about two decades too late.

ISSUE 18 . 2015

19 Down Syndrome Amongst Us

The Chesed Of Down Syndrome By Rabbi Moishe Mendlowitz

go down in our family’s history as the darkest day, turned out quite differently. It has become a day that Hashem awarded us with an abundance of chesed to a degree that is incomprehensible. Five years ago, on ‫ ט“ו כסלו‬on a rainy Thursday night, my wife gave birth to our precious daughter, Raizel. After holding our newborn for a mere few minutes, she told me that something seemed wrong and that the baby appears to have Down syndrome. I, like a faithful husband (who didn’t want to face reality and just climbed into my cocoon of denial) brushed off her observations and told her she was in a hormonal mess and everything was all right…. The obstetrician came into the room and she asked him what he thought. He took a look and said, “Well, I don’t know; you will have to ask the pediatrician”, and he instantly disappeared, not to be seen again (I wonder why….). I decided to wait until my parents came by and see whether they detected anything on their own. My mother walked in, looked at the baby and with a face full of horror turned to me and asked, “IS SHE DOWN’S??”

My world turned black. The emotional pain and turmoil that enveloped me at that moment is impossible to describe. To this very day, even though I have come to see the extreme chesed that Hashem did with us by giving us such a child, whenever I hear of a couple that just had a child with Down syndrome, I still become very emotional and cry along with them. I know and feel the pain they are going through. I was numb with pain and confusion and reeling from the shock of our life’s dreams having become shattered in one split second, without any forewarning. Thousands of questions were churning in my head: What will people say? How will I react to people’s reactions? Why me? Now I will become a rachmonus case? How do I do teshuva on the aveiros that caused this baby to be born to us? How will we manage our home so that it shouldn’t fall apart from this challenge? How will we handle our other children so that this won’t adversely affect them? Should we keep her home? Are we making the right decision by doing so? What does Hashem want from me? What does Hashem want from us?

FEATURES

What initially seemed like it would

ISSUE 18 . 2015

“

There are two ways of meeting difficulties: you alter the difficulties, or you alter yourself to meet them”

And on and on…. non-stop questions and doubtful answers. That Shabbos was the hardest Shabbos I ever had. By Kabulas Shabbos I cried my heart out to Hashem to help me get through this crisis. We went through many ups and downs during the past five years. Upon reflection of what we went through and what I have gained, I see the big chesed that Hashem did for us by giving us our dear daughter.

FEATURES

Instead of the usual “normal” way of thinking that we are having children to get nachas from, or they should make me kvell socially, I now know and live with Eternity in mind. I have children because Hashem told us to have them and whatever He sees fit to give is what I will get, and raising my children is just to do ‫רצון השם‬. I was forced to learn and live this since all my other parental dreams were crushed. Why else did Hashem give me such a daughter? A child that will never be that outstanding student in school… she will never get a shidduch… she will never have children… and the list goes on. So why then did Hashem send down this child with ‘kilo maalos’ to this world? We must conclude that the reason for having children is for entirely different reasons.

First and foremost is the basic emuna, which we call “living emuna”. We all believe that Hashem is guiding every step of our ways and is in charge of everything that happens to us, but do we truly “live” emuna and actually “feel” it every step of our life? I can say I have never felt Hashem’s presence as strongly as I feel him now in everything that goes on around me. They say that “there are no atheists in a fox hole” and that is exactly what I felt. Not that I was an atheist ch’v, but did I get a real chance to “live” emuna every second of the day and learn and practice in real life what we were taught all these years? Hashem basically forced me into a situation where I should have to see and feel that He is guiding us every step of the way. Much like a father guiding his child down the path of life, with the child constantly looking up to his father and asking, “So what do you want me to do now? Guide me because I am lost”. My whole perspective on my tachlis in having and raising children has changed.

Hashem has a plan for every neshuma, a tikkun that everybody has to achieve. We human beings cannot fathom the intricate and complicated cheshbonos that Hashem has for every individual. This includes what every human being has to achieve according to his intelligence, life upbringing and many more factors. This also includes who should be a parent to whom and whatever tachlis each child can live up to - what is expected of them and what they have to achieve. This all seems like nice talk and we all know this in our subconscious mind, but I can say that thankfully I had the z’chiya to live this and practice it and I am very grateful to Hashem for giving me this lesson so I can serve Him better. We went through a rough period when our daughter was experiencing seizures, and we were thrown even deeper into a world of uncertainty. We tried all kinds of medications, visited doctors, yet nothing seemed to work. We were just watching our daughter, who had done so well,

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ISSUE 18 . 2015

22 regressing into a vegetative state. The doctors’ prognoses were grim. I kept on telling Hashem (and myself), “Hashem, this is your child; You gave her to me and I trust You fully in everything You do”. I then had to learn and practice to live one hour at a time since the future is anyways totally out of our control. What a great experience it was to live this way, knowing and feeling that I was totally dependent on Hashem and there was no need for, and no gain from having any plans for the future. This was the total freedom of ‫רבות מחשבות בלב איש‬ ‫ועצת ה‘ היא תקום‬. Chasdei Hashem, after over a year of ups and downs in the struggle with her seizures, Raizel fully recovered. The cherry on top is the light and happiness Raizel has brought into our home. Her radiant and pure smile, her happy and joyful hello, her bear hugs, her love and affection to all, her purity that wins

everybody’s heart, is an added chesed that came along with her when she entered this world. I cannot imagine our home without her; she radiates happiness in our family. I have come to the realization that the day I thought would go down in history as my darkest day turned out to be the day that I was bestowed with immeasurable Chesed Hashem. I am since living with a stronger emunah and trust in Hashem, and even just for the ‫ גשמיותדיגע‬happiness that Raizel brought into our home it has been all worth it. May we always have the clarity to realize all the chesed Hashem does with us, and may we merit to greet Moshiach very soon in Yerushalayim. Amein.

Rabbi Mendlowitz serves as Menahel of Rachmastrivka cheder.

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Down Syndrome Amongst Us

ISSUE 18 . 2015

Mothering a Special Child By Miriam Kornitzer

The

greatest pain of having a child with Down syndrome is the pain of a lost dream.

Like all mothers, I dreamt and imagined the bliss and tears of joy that would greet me at the birth of my first child. And as I labored for endless hours, I worried so much and hoped so hard that my baby would be healthy. And I lost those dreams - I’ll never have those blissful memories of giving birth to my first child. Because the moment I saw him, I knew that I had been disappointed. Like all soon-to-be parents, I viewed my future children as my continuity. I had davened and cried for children that would fill the world with their Torah. I had not received anything bad, it was just not what I had asked and begged for. And if I think about my lost dream, I become so sad. I will never be the same person. Because that’s how it is when you mother a special child. What comforts me most is when I hold my precious baby. When I look into his eyes and feel the love only a mother can experience, I know that there are no mistakes in this world. He is mine - to feed, to worry about, to nuzzle noses with, to take from doctor to doctor, to cry with him as they draw his blood, and to love. And I’ve realized, quite early, that children are not here for us. We are here for our children. And when I know that I have been charged with this child and his unique mission, I feel the strength and the privilege to rise to the occasion.

FEATURES

When I first gave birth, the thought that kept recurring in my mind was “the loss of a dream” and even now, every time I think those words, I begin to cry.

YIDDISHE NACHAS ISSUE 18 . 2015

YIDDISHE NACHAS

ISSUE 18 . 2015

26 Down Syndrome Amongst Us

Life’s Unspoken Bargains

POETIC LICENSE

By Rishe Deitsch we all have basic, unspoken expectations of others we give things to them and we expect things back that is the nature of any relationship we expect things of our spouses of our parents of our children of employees and employers of the people who serve us in stores or restaurants in banks and post offices when it comes to our children, we have unspoken expectations, too we love them unconditionally but have expectations nevertheless for example, Chana expects her daughter Sarale, now just a few months old, to eventually become toilet trained, become independent, be a mentsch someone Chana can be proud of– even lean on some day this is why Chana can so happily care for the totally dependent Sarale now, as a baby–because she assumes it is temporary it’s all unspoken Sarale never signed a contract or shook on it, but it is a strong expectation on Chana’s part and Chana will feel betrayed if Sarale doesn’t fulfill any part of the unspoken bargain even though it is not through any fault of her own! still, Chana will feel as if they had a deal and Sarale–or was it G-d?–broke the deal

and even “can you believe I once saw her act really mean” to the child

27 ISSUE 18 . 2015

so that is why you sometimes see impatience, bitterness, anger and disappointment in the parents of handicapped children and we are quick to condemn those mothers–they are “not nice,” we say, they have “no sympathy”

fact is, those parents are left holding the bag they are left holding up their part of the unspoken deal, while their child has broken his part and they will be left in this position for the rest of their lives unless a miracle happens the handicapped child, now a handicapped adult, through no fault of his own, broke the deal they had when he was born he stayed a baby

they still have to care for him, years after all his friends who kept the bargain are on their own they love their child but they are in pain the handicapped child has his share of pain too but so do the parents think about how angry you become when the waitress who took your order in the restaurant makes a 20 minute private call while you wait for your food she did it because she is desperate or disabled in some way, perhaps temporarily but you are angry and disappointed anyway... the waitress didn’t keep to her part of the unspoken deal between you and now your evening is not going as planned this is the way some parents of a handicapped child feel except it’s not one evening their entire lives are not going as planned and they carry the added burden of feeling guilty for the feelings they have, feelings which are taboo for parents: disappointment, resentment if you are blessed that all your children are on their way to a healthy independence may I suggest you stop imagining how much better you would do than the parents of the handicapped child how much more compassionate you would be don’t give them the poem by Emily Perl Kingsley about winding up in Holland instead of Italy just thank Hashem you are not in their shoes and support them yes, support them or, at the very least, stop condemning them and pray that everyone in your life keeps to their unspoken bargains

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ISSUE 18 . 2015

30 Down Syndrome Amongst Us

Come Touch His Cheek By Gary Shulman, MS. Ed. © This child of mine you stare at so, Please come closer so you will know Just who my child is and what I see when those sweet eyes stare back at me I see no limits to my child’s life Although I know It will be filled with strife,

I’m hoping that doors will open each day I’m praying that kindness will come his way You look frightened? You tremble with fear? Come, come closer touch him my dear Touch his cheek so soft so sweet Be one of those people he needs to meet

Someone who will look and hopefully see The skill, the talent The ability Please come closer You don’t have to speak Come a little closer Just touch his cheek And when you do you will see this sweet, sweet child is no different than you or me

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GRANDPARENTS' PAGE

ISSUE 18 . 2015

32 Down Syndrome Amongst Us

Grandparents’ Page By Schwimmer Family

Gitty

[age 6] had a unique relationship with her maternal grandfather, a man with a giant heart and great vision. Theirs was a deep, mutual, unconditional love. Last Pesach, Gitty’s afikomen request was a trip to Eretz Yisroel, to visit R’ Yaakov Meir Schachter shlita, with whom her zeide shared a close connection. Of course, her wish was granted, and Gitty joined her zeide and parents to the Rebbe for an unforgettable experience. This proved to be the last time her grandfather could travel, and it was poignant and special. Even though walking was hard for him, Zeidy insisted on finding a gold necklace with a charm for Gitty. This involved weaving through the narrow Geula streets searching for the right shop. Today it is a cherished keepsake, worn on Shabbos, with the warmest memories of a zeide who adored Gitty. Another special gift that Gitty will one day treasure iyH, is a magnificent ring that her zeide had custom made just for her. A blue stone was specifically ordered

- to match Gitty’s sparkling blue eyes encircled with diamonds, in a slim ring size, to fit Gitty upon her Bas Mitzvah iyH. Planned with love by a zeide who saw a beautiful girl - inside out. Residents on Bedford Ave. in the vicinity of Wilson and Rodney Street have particularly fond memories of a proud grandfather walking his precious einikel to school daily. Throughout nursery and kindergarten years, each day rain

Gitty was well aware of Zeidy’s adoration. In the week of Parshas Veyeishev Gitty spoke about the sedra at the Shabbos table. “Yaakov hut leeb gehat Yosef de merste… Azoy vee Zeidy hut mich leeb!” Since her grandfather passed away half a year ago, Gitty often speaks of how much she misses him. “Er iz in himmel. Er zayt mich ubber ich ken ihm nisht zayn.” One evening, when Gitty was being

tucked into bed, her sister expressed, “Ich miss Zeidy”. To which Gitty simply responded, “Ich auch; de hust a solution?” By the Seder this Pesach, Gitty insisted on saying, “Tatte layben, Zeide layben, ich vill dir 4 kashes fraygen… Veil er hert mich in himmel!” While pushing Gitty on the swing in the playground, Gitty asked her mom, “Swing mich hoyech biz Zeidy”! Nowadays Gitty speaks lovingly and davens for the day Moshiach will come, so that she could be reunited once again with her beloved Zeidy. ‫לע"נ ר' יונתן בנימין בן ר' משה אליהו זצ"ל‬

“

None of us can see with the eye of love, if we are afraid to see zaza our own, often hidden ourselves, including Somethings Sweet disabilities. None of us can love others openly and generously if we are afraid to love weakness and vulnerability.” -Timothy Shriver, Director of Special Olympics

GRANDPARENTS' PAGE

or shine, Zeidy linked hands with Gitty for the two-block walk from home to Bais Yaakov of Vien school. The message was loud and clear: nothing was ever more important than taking his darling granddaughter Gitty to school!

ISSUE 18 . 2015

34 Down Syndrome Amongst Us

Freedom By Sarah Sander

OPEN FORUM PERSPECTIVES

Oftentimes,

salvation comes with pain. But then the pain subsides and the exhilaration of freedom erases the remnants of suffering. When our children with Down syndrome are born and subsequently diagnosed, we are in pain; no, we are in agony. For some, giving-up mode takes over for a while until acceptance and recovery set in. For others, survival mode kicks in, sometimes in strange ways. Some parents will fight the diagnosis even as it stares them in the face. They vow that their child will never belong among this group of ‘lesser’ human beings and they will do everything within their power to elevate their child to the level of typical people. While raising every single child to reach its ultimate potential is a lofty parental goal, raising a child with Down syndrome to reach others’ potentials is a dangerous goal. It is a form of denial. Parents push and push for years, all the while keeping one eye tightly shut to what they are depriving their children of, patting themselves on their backs for disassociating with ‘those kids’ until one day it all comes crashing down. Their ‘brilliant’ child still has slanty eyes, doesn’t have true friends, has aged out of mainstream school (which was really no inclusion picnic; it consisted of constantly being removed from class and being taught on a one-to-one level so when and where the mainstreaming happened still beats me), and has nowhere to go and nothing

to do. It is a sad reality for many who can no longer turn the clock back and their anger and guilt with themselves forces them to point fingers. Many are advising new parents to give up their babies because ‘these kids’ have no future and they turn into terrible burdens. Such advice is downright dishonest and un’Torah’dig. So what is the solution? Painful, but freeing…. every parent of a child with Down syndrome should look themselves in the mirror, make eye contact with their reflective image and state loudly and clearly, albeit not very politically correct, but acceptable on rare occasion: My child is mentally retarded. End of statement. Deep Breath. Painful but liberating. Reality can now reign. Once that reality becomes the guiding force in our lives, we can then move on to the following resolutions: I will do the best I can so that my child will reach his/her potential with the skills, tools and limitations that he/she has been given by the Ribono Shel Olam, and I will not try to make my child into a scientist, professor, accountant, etc. I will try to provide my child with a life that will ultimately make him/her happy and us as parents too. Like I wrote at the beginning – salvation comes with pain, but the sweetness of loosening those shackles gives new meaning to the concept of freedom.

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An SNT, which is authorized in New York under EPTL 7-1.12, would allow the beneficiaries to qualify for government benefits while receiving distributions from the trust if the following conditions are met: (1) the beneficiary suffers from a severe and chronic or persistent disability; (2) the trust document clearly states that the bequest should be used to supplement, not replace, government benefits; (3) the trust prohibits the trustee from using the assets in a way that may impair or diminish the beneficiary’s entitlement to government benefits or assistance; (4) the beneficiary does not have the power to assign, encumber, direct, distribute or authorize distribution of trust assets; and (5) the distributions are at the sole discretion of the trustee(s) and are not mandatory. Parents often ask whether an SNT should be created or, alternatively, whether an inheritance should be left to other trusted members of the family directly with the intention that those trusted family members would take care of the child with “special needs.” Leaving an inheritance directly to a third party (and not in an SNT) is usually not the best option, as there may be a disagreement as to the true owner of the money, which may create problems. For example, if a parent were to leave money directly to their daughter in order to take care of their disabled son, the daughter’s ex-husband may try to take ownership the money in a divorce settlement, or if the daughter were deep in debt, her creditors may try to collect from that money. On the other hand, using an SNT would create a concrete plan of financial care for the child with “special needs.” The SNT would specify how the funds are to be utilized and who is to receive the funds upon the beneficiary’s death. On the other hand, if a sibling, for instance, holds funds for another sibling, there can be a discrepancy as to the true owner of the money, family problems can be created, and it is unclear whether the holder of the funds can use the money for him/herself, even if only temporarily. However you choose to organize your affairs, what’s most important is that you create a clear, easily accessible system that will light the way for your family and friends. May we all merit living long, healthy and happy lives - amen. The attorneys in the Trusts & Estates Practice Group at Yedid & Zeitoune have over a combined 20 years of legal experience and are ready to assist you with all your estate planning needs. Isaac Yedid, Esq. and Raymond Zeitoune, Esq. Yedid & Zeitoune, PLLC 1172 Coney Island Avenue Brooklyn, New York 11230 Phone: (347) 461-9800 Fax: (718) 421-1695 Email: info@yzlawoffice.com NYC Office - By Appointment Only: 152 Madison Avenue, Suite 1105 New York, New York 10016

OPEN FORUM EXPLORING DISABILITIES

ISSUE 18 . 2015

36 Down Syndrome Amongst Us

Living With Leukodystrophy By Chaya Ruchy Stern

Temmy, age 18, was born 3

years after our marriage and Volvi, 11, was born 10 years after our marriage. Temmy is the second and Volvi is the fifth of six children.

Both children were healthy and appeared completely normal at birth. They were alert newborns. They were beautiful (an odd look can indicate issues). Their APGAR scores were 9 and 10. Temmy, at around 2 months old was not having head control. When I complained to the doctors about it they said, “Oh she is lazy; it’s okay”. Temmy was always at her best when she visited the doctor for well visits and immunizations. She was never sick. She was a very sweet and “good” baby, but did nothing else. She could not roll over, crawl or creep. She did not use her hands to play with toys. She was not curious as babies are. I would see babies her age pulling off their socks and I was thinking, “hey, my baby doesn’t do that.” I remember before Pesach, my sister-in-law complained that she can’t do

anything because her Temmy, 8 months old at the time, (a week older than mine) kept unpacking all the cabinets. “Be happy you can do your Pesach cleaning without a bother,” she chided. I was not happy about it. By nine months of age the doctors finally agreed we had a problem. When Temmy was eleven months old an MRI explained it all. The diagnosis is Leukodystrophy. White matter /myelin in the central nervous system is what makes the messages move around quickly, or rather instantly. In the case of Leukodystrophy the myelin sheath (the coating around the nerves) is both, not enough and the quality is not slick / slippery enough for CNS (central nervous system) messages to move around. This makes serious developmental delay. Myelin gets produced only after the baby is born. It is made by the baby’s brain as it starts to develop. More development, more myelin. More myelin,

By the time Volvi was born, I had had two other children in between. I did not trust babies anymore. They could be cute and all but needed stimulation. I did just that and the two children advanced at an early stage. Volvi was also doing nicely, but always just seemed to miss it. I complained once again. “You know Mrs. Stern, you need to relax and not be so worried. You are burnt out from Temmy” I was told. I definitely was overworked. That was for sure. But that didn’t make Volvi normal or less delayed. I finally got a referral for an MRI at seven months. Once again, it explained it all. The joys were many. A typical milestone reached by a normal baby was displayed to us in slow motion. We got to see each muscle doing its job. Whereas a regular 3-month-old learns to roll over quickly, using many muscles to complete the ‘task’, our children did it slowly enough for us to thank Hashem for all the puzzle pieces and gears that work together. In fact, some tasks were completed only halfway, like scratching the nose, and we were still overjoyed at the effort the child made. The struggles were plenty too, but somehow Hashem gave us the koach (energy) to push on. Yes, it is mysterious and does make you wonder how parents push on like this, hour after hour, month after month, year after year. When different parents called me over the years for ideas, resources, etc. they imagined that I am sort of

Leukodystrophy, Agenesis of the Corpus Callosum and Developmental Delay Leukodystrophy (from the Greek words leukos: white and dystrophia: faulty development, degeneration) has come to mean a genetic metabolic disorder of the white matter. In leukodystrophies, myelin may be absent or decreased, of an abnormal structure, and unstable. Normal myelination may not be attained and what myelin is formed may break down. Some leukodystrophies affect myelin and myelin producing cells directly. The biochemical lesion may involve myelin lipids, myelin proteins, or other compounds. Some of these components are shared between the CNS (central nervous system) and the peripheral nervous system (PNS), so that both CNS and PNS are affected by the abnormality. Other components are unique to the CNS and in these leukodystrophies only the CNS is involved. Some leukodystrophies affect other cells, e.g., astrocytes, and other biochemical pathways resulting in indirect damage to myelin. Leukodystrophies usually present in children and young individuals with spasticity (stiffness and involuntary muscle spasms), ataxia (the loss of full control of bodily movements), cognitive decline and seizures. Agenesis of the Corpus Callosum is a disorder within the family of Leukodystrophy, Agenesis of the corpus callosum (ACC) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. It occurs when the corpus callosum, the band of white matter connecting the two hemispheres in the brain, fails to develop normally, typically during pregnancy. The development of the fibers that would otherwise form the corpus callosum become longitudinally oriented within each hemisphere and form structures called Probst bundles. In addition to agenesis of the corpus callosum, other callosal disorders include hypogenesis (partial formation), dysgenesis (malformation) of the corpus callosum, and hypoplasia (underdevelopment) of the corpus callosum.[1] VPS11 identifies the particular genetic mutation which causes the above-outlined deficiencies and disabilities.

ISSUE 18 . 2015

EXPLORING DISABILITIES

more development. In fact, if we were to take an MRI when the kids were 1-3 months old there would be very little difference from a healthy child’s MRI.

OPEN FORUM EXPLORING DISABILITIES

ISSUE 18 . 2015

a malach (angel). I assured them that I often don’t have the patience, strength, and/or creativity, to continue this heavy job, along with my other responsibilities as a mother. I had to be honest and open. Perhaps this honesty and openness with myself and others gives me the koach. Or rather, denying it would sap me of this precious energy that I have little of. Boruch Hashem, the rest of our children are everything a mother can wish for and more. Ka”h they are well adjusted, smart and kindhearted. When my daughter was in 9th grade camp, it was she who realized a young girl had a toothache. The girl was from out of town and had no insurance coverage and therefore did not want to bother the camp mother. My daughter noticed that the girl was not eating all day! She insisted that the girl get at least temporary relief from the local dentist. Yes, my children are affected. They learned from early on to notice... and to do something about it! They always marvel at a healthy baby’s development and they take nothing for granted. With the first child’s diagnosis (on Tisha b’Av, no less!) we were in a daze. We could not fathom the extent of developmental disability to our gorgeous little girl. Sure, we heard that she will never walk, talk, etc. but we could not imagine that she would stay this way. With the second child’s diagnosis things were very different. It was sad. We could hardly look at each other’s grief. Our beautiful boy and his future so bleak. We tried to be as upbeat as possible, at least for the other children’s sake. With time, Hashem has His way of healing. For years we were looking for an answer as to the reason for this disease. This was frightening, as shidduchim for our healthy kids was becoming an issue. Chaim Jalas

“

Challenges are what make life interesting; overcoming them is what makes life meaningful”

from Bonei Olam was a straight shaliach (messenger) from Hashem. He worked tirelessly (does he ever sleep?) to find a genetic answer and stop this disease from ever happening again. Hashem, in His kindness, answered our tefillos and provided an answer - VPS 11 mutation. This is a recessive genetic disorder; the kind where both parents are carriers of the specific mutation. Their children can be either carriers, non carriers, or affected. Dor Yeshorim tests only for recessive genetic disorders, meaning both parents need to be carriers in order to have an affected child. Dor Yeshorim will test before a shidduch to make sure that there will never be VPS11 again, just like there hasn’t been a Tay Sachs birth in the last 28 years, Bezras Hashem! If you wish to have your family member's disability explored in Down Syndrome Amongst Us, kindly submit your family story, including correct diagnosis, and a picture/s of the child/children. You can submit it via email at: downsyndrome@earthlink.net or mail to: Down Syndrome Amongst Us - 32 Rutledge Street, Brooklyn, New York 11249

ISSUE 18 . 2015

The Garden of Life By Chayala Reich Down Syndrome Amongst Us

The garden of life, Is full of fragrant bloom, Patches of buds, That are to be sprouting soon,

Sibs' Niche'

Nourished with passionate care, They reach high, And at last flourish with flair, Flowers that sway by,

Among identical tulips, He is not the same. His angelic face, And sweet smile, Though on a slower pace, Things take him a while.

Among hundreds of tulips – a lone rose, Among shades of white - a red hue, Among smooth stems – a prickly rod, Among identical blossoms – a different view,

He is a gentle sprout, Soft and sweet, Charming – no doubt, His smile can’t be beat.

The rose – so frail and new, Looks up to the sky, With an open view, Its hope spirals high,

I, as his sister – so proud, Hold his hand, And present him to the crowd, So they can understand.

The rose has been granted, The ability to grow, Among tulips that are planted, A spontaneously blossoming row.

Give him the chance – to grow tall, Give him the chance – to love, Give him the chance – to see all, Our affection – a gift from Above.

There is one flower, Yechezkel is his name,

You are the most beautiful flower ever, Dear Yechezkel, I love you forever!

ISSUE 18 . 2015

‫הקב“ה‘ס‬ Violin

Down Syndrome Amongst Us

By Shoshana Baum

Her head tilted Her fingers, moving swiftly With the bow in her hand Playing her violin The delicate sounds Penetrate my heart I feel uplifted With the tunes I watch her stop, abruptly Pulling and turning Handles and wires Then starting all over again This time I rejoice The smooth voice Healing every wound Cradling my soul Now, when she pauses And starts stretching and stretching, again I break the silence With puzzled eyes And questioning manor I request my desire For her to clear my confusion Why risk losing it all? When turning And stretching For no reason at all?

She explains The tighter the strings The nicer the voice The thinner the wires The richer the tunes Yes it might get torn But when the strings will stretch, To the tightest it can possibly be without tearing Now that will be harmony! As the tunes go higher I allow my wings to fly To the one and only harmonious realm And I take a peek in ‫שמים‬ I spot A gorgeous violin Playing music Right beside the ‫כיסא הכבוד‬ Aghast! I realize ‫'הקב"ה‬s strings, going thinner and thinner Playing the most intricate music Only heard in ‫שמים‬ With amazement I wonder From which materials These strings are fabricated

Suddenly, in my mind Appear the faces of those Who struggled through life's paths Always with a smile Those who made me wonder What gave them the courage To stand alone Against all odds The ones who amazed me With their strength To always thank '‫ה‬ In their hardest moments And I understand The ones who stretch for ‫הקב"ה‬ Are the ones releasing The most gorgeous melodies I open my eyes To reality and speak out loud Yes, ‫הקב"ה‬ Although my life's situation May be intricate and difficult I promise I will stretch and stretch And never tear And with courage and strength I will always sing For you ‫הקב“ה‬, gorgeous melodies ....

Sibs' Niche'

The stars are shining The sky is clear I watch Her hands

CARING FOR QUALITY. CARING FOR QUALITY OF LIFE.

ISSUE 18 . 2015

Chumy By Hindy Oberlander

Down Syndrome Amongst Us

(written at age 12)

Different? By Malky Leitener

Down Syndrome Amongst Us

Hashem created the world With different people No one is alike No one is equal

One person is short Another is tall One’s size is extra large And another’s small

One’s hair might be orange While someone else’s is brown One’s eyes slant up While another’s go down

So when you see someone Who is different than you Why stare? When you’re different too!

Sibs' Niche'

Some people have nothing nice to say about her, yet my list is long When singing the praises of Chumy’s song. Some people say she is unable to do many things But I say she is special, and the daughter of kings. Some people say it’s a challenging nisayon to have such a sister But I say, “Excuse me, you’re mistaken, Mister!” People might say she’s different, but I say she’s the best Because they don’t realize she has one MORE chromosome and not one less!!

ISSUE 18 . 2015

My Little Teddy Bear

Sibs' Niche'

By RR

Down Syndrome Amongst Us

If Hashem would have offered you to me a few years ago, I would have said OH (no!)! Why do I need him? My life is already flowing over the brim! But Hashem did give you to me And I truly love you, as you can see. You give me so much, With your soft touch, Your embrace is so cozy, Even when not all is so rosy, And I hug you my little teddy bear, As we both grin from ear to ear!

“

Although not every choice you make is about directions, all choices will influence where and how you end up.”

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## $ % & !

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â&#x20AC;&#x153;

A wise man makes his own decisions; an ignorant man follows the public opinionâ&#x20AC;?

Would you like a better connection with your child? More honesty and less anger? Less blame and more communication?

Connecting Fathers and Sons Eight session program to promote understanding and acceptance. Eliezer Evan Schwadron, LCSW-R 917-595-6953 eliezerschwadronlcsw@gmail.com

ISSUE 18 . 2015

46 continued from back page

Up Syndrome Deathly Painful It was the day after Pesach and I had the laundered Seder linens drying on a rack in a room right off the Pesach kitchen. My husband and I announced to our children that nobody may enter neither the Pesach kitchen nor that adjoining room because they had already been in contact with chometz . They all complied. Hours later Moishey approached me and with a krechts asked to go take a sefer from the forbidden room. When I told him he couldn’t he looked so dejected that I blurted out, “Moishey, only if it’s pikuach nefesh can you go in there. Is anybody dying?” to which he answered, “No, not dying, but pain, tremendous pain…..” and he pointed at himself.

Tremendously Small... Racheli spilled all of her ponytail rubbers and I made her pick up every one of them. She was really mad. A little later, while waiting for her bus I told her, “Your birthday is next week; you are going to be 7!!!” She said, “Yes, I’ll be a big a grownup!” So I said, “Yes, and grownups help clean up and don’t make a mess and don’t spill anything....” She looked at me and said, “I’m not ready; I’m tiny!”

Clothes Make the Man? My 2-year-old grandson slept over and when he appeared in his pjs, fatigues print and all, Moishey announced, “Yossi looks like the IDF in Gaza.”

Shabbos Goy? Shabbos Yid!! My daughter, son-in-law and granddaughter (Miriam) came to us for Shabbos. Six-year-old Chaya Devoira with DS, ever eager to help, went to the cupboard to get a toy for Miriam. She came back with a battery-operated toy. As it was just before Shabbos, my wife said to her “No, it’s muktze.” Chaya Devoira looked up at her with perfect innocence and said “No, turned it off.”

What a Choir! It was about 3 weeks after Pesach and I was on the phone with Access-A-Ride, trying to find out why Moishey’s pickup was late. I had the phone on speaker as I was preparing breakfast for the family and loud, jazzy, ethnic music filled the air, coming from the telephone receiver. Moishey winked and said, “Is that Access-A-Ride’s sefirah acapella?”

Party Animal As much as he is a chevra-man, Moishey is brutally honest and straightforward. He has a tendency to raid the refrigerator and pantry while everybody is asleep during the night. Therefore, we installed an alarm system which alerts us if Moishey is going toward the kitchen while the family is sleeping. As I was putting the finishing touches on his camp packing he said to me, â&#x20AC;&#x153;Pack up the alarm too, just in case I wanna party in the bunk during the night.â&#x20AC;?

Wishful Thinking

We provide tutors for children with special needs after school hours.

Moishey walked in late from shachris and Help with supplementary learning was smacking his lips. I asked him whether he ate and he admitted to buying himself a nice Aleph Bais, Kriah, Bar-Mitzvah brunch after davening. I myself was hungry and Prep, & More in Yiddish, Hebrew continued washing the dishes, while calling out & E nglish repeatedly, â&#x20AC;&#x153;Moishey, make me jealous; come tell me what you ate! Moishey, please, come make me jealous!â&#x20AC;? Moishey stepped into the #"' ' (& kitchen and said, â&#x20AC;&#x153;You canâ&#x20AC;&#x2122;t be jealous. Only %, ! % , ' " (& one ('#% " ##% " '#% #(" % person was jealous.â&#x20AC;? My eyebrows shot up in question, to which Moishey replied, â&#x20AC;&#x153;Only

+ Korach was jealous.â&#x20AC;?

#) &$ , #(& , ## #!

Live-In Calendar Baruchâ&#x20AC;&#x2122;s parents were leaving to Montreal on a Wednesday for a visit of several days. Pesach Sheini fell on the Sunday that they were going to be away. When they were leaving the house in the wee hours of the morning for their long drive, the following sign on the door, courtesy of Baruch, greeted them:

,#( * & '# ' ")# ) * ' ' #" #% # % " ,#(% & %) & #"' ' (&

Up Syndrome

The Power of Tefilla At Its Best: At my daughter’s Shabbos sheva brochos two days before his Bar Mitzvah, Dovid stood up on a chair and screamed “sheket” then he started to speak (it was actually the only speech that everyone was quiet!) He said: ‫לא היה ליהודים לאכול‬ ‫משה התפלל לה‘ והיה מן‬ ‫לא היה ליהודים לשתות‬ ‫משה התפלל לה‘ והיה שתיה‬ !!! ‫ יהיה אוכל‬- ‘‫רבקה דינה ולייזר תתפלל לה‬ (Translation: The Yehudim did not have food Moshe davened to Hashem and they had Mahn The Yehudim did not have what to drink Moshe davened to Hashem and they had what to drink Rivka Dina and Lazer, daven to Hashem and you will have food) continued on page 46