You state simply and perfectly truths that should be obvious to every God-fearing person. Thank you for sharing your heart with us.

My daughter also has Down syndrome, and we had to fight long and hard for inclusion in the frum school system. But once she was accepted, she studied very well, using adapted materials through the eighth grade.

Robin, you have written a beautiful article that expresses the feelings and thoughts of many of us who are parents of children with Down's.

The only thing that I would caution people is to realize that inclusion in community and family life does not have to come by way of mainstreaming a child in a class that they may be nowhere near on the level for but can also be very successful when one's child is in a special-ed school and getting much-needed intensive therapy and developing close relationships with girls who are "on her level".

We adopted a wonderful adorable sweet girl who has Down's and most people don't even realize that she has anything different about her because she looks and behaves so normally -- many times people have been shocked at various simchas to hear that the little girl at the next table has Down's and they really had no idea as she looks and acts as "normal" as every other child there and behaves much better than a lot of otherwise "normal" children.

It may sound funny, but I see that her being in a "special school" allowed her to develop relationships and self-esteem that she would not have gotten had she been "included" in the local Bais Ya'akov after kindergarten. She was in regular ganim and mishulav ganim through gan chova [kindergarten] and then at the age when the academics became the focus of school she went to a school where her classmates were all basically on her level and she could do well academically in comparison with everyone else.

As Robin says, every child is an individual and must have parents who are willing to stand up for what their child needs.

I think this e-mail is great. As a once substitute teacher, the one about the child with disabilities is a gem of a title. Too bad society doesn't see it that way.

What a moving and beautiful story! Thank you.

You have wonderfully encapsulated what should be the attitude of everyone regarding children with Down's Syndrome! My sibling is 44 years old - and is definitely a person first and, by the way, has Down's Syndrome. My mother didn't give him a choice - he was raised the same way that his five siblings were - to be a mentch, have a goal in life and be a good Jew.

Thank you for a wonderful article and much, much nachas from your lovely Julia. Kol Tuv.

Robin,
I appreciated your article and the important points you raised.
You wrote "Furthermore, there should be no fear regarding marrying off children from a family who has a member with Down syndrome."
As the mother of a special child myself, with a syndrome other than Down, I wish to stress that this comment bothers me every time I hear it.
There are MANY genetic conditions (BTW not all genetic conditions are hereditary), such as heart conditions, diabetes, asthma, impaired hearing or vision, all of which can be serious and life threatening, and NO ONE ever asks about those when checking out a shidduch!
Whether or not someone has a parent or sibling with a genetic condition, Down or other, they are entitled to a shidduch., without having to hide their sibling.
Especially in our time and age, with all the scientific advance, when all the genetic testing can be done before marriage to prevent dangerous "gene mixes", such comments have no place!
Aside for being far more common, Down syndrome should be no different than others in this respect.

I posted here nearly two years ago (4/3/06) about the exclusion of my daughter from chareidi schools.
Baruch HaShem, for the last year and a half my 13 year old daughter (who has DS) has been in a regular Beis Yaacov school, sixth/seventh grade. She is about half of the time in the regular classroom (and her classmates accept her wonderfully), and half of the time getting private instruction in the hardest subjects, and preparation in advance for her in-time.

I would like to point out that if someone comes crying to the Rav about the terrible tradgedy that has occurred, and how he hasn't got the ability to raise a special child, the Rav will often tell them to give the child up. People who want their children ussually don't ask shailahs. (Did anyone ever ask wether to keep his "normal" newborn?) Parents in the first few days are so unprepared, so uninformed, that they approuch the Rav in hysteria. If people would encourage new parents to talk to more vetern parents, to wait and try things a bit, the rate of giving away children with special needs would drop signifcantly.
And again, my daughter is not a "motek", a"oh these kids are all so cute"... she is an individual, with her own personality.And she is a TEEN, not a large "baby".

When we came back to my gyn. (for the next pregnancy) after receiving our son's diagnosis at age 1.3, we told him, by way of explaining the difficult pregnancy I had had, that our son has William's Syndrome. When he asked us what that means, my husband replies: "It means that he has a very loving personality and a special charm that gets people immediately attracted to him." Then he also added that it means he has difficulty with A,B&C, etc...

I love the title of this article - and the article itself, of course. Let's not forget that our kids are first and foremost kids. Then, just like other kids may have social issues or difficulty with math - our kids also have other "issues" and "problems" - but these by no means DEFINE them. Good job.

Deena

My son is a very vibrant, social and intelligent child. He also has a motoric development disorder called DCD or Dyspraxia. Because of this condition, he can't read, can't write, can't do math eventhough he has an IQ of 120. He can't even do his shoelaces or brush his teeth in a decent way. Frustrating, both for him and for us.
Our community has a school for Down Syndrome and other mental conditions, but my son can not go there because of his IQ level. There is another special school here, for kids with ADHD, Dyslexia and other learning difficulties. My son can not go there because of his motoric limitations.
We can not move to Israel or the US and look for a school there, because of financial reasons.
I am at the end of my energy and am seriously considering sending my son to a special non-Jewish school eventhough we are charedi. I this school, he would be able to learn to read and write because of the specialy trained teachers and therapists.
But this option is also a non-option because it would mean the end of a large part of my son's Jewish education.
H"m gave me only one child, my son, and I realy don't know what He wants from me. I'm frustrated that my son has no place in the Jewish schools and is forced to go to a non-Jewish school if we want him to learn to read and write. (Forget about reading or writing Hebrew).
I have zero help from my community. Most of my friends can not conceive taking a non-Jewish school in option. They can also not conceive what it is to have a child with an IQ of 120, who can't read or write.
The only help I have is from non-Jewish therapists. They all tell me to send him to the special non-Jewish school.
With moments, I manage to accept everything H"m gives me and appreciate all He has done for us. Unfortunately, there are many other moments I don't know if I'll have energy to get trough this. I feel very frustrated.
How much I like to read uplifting stories like the one above, reality isn't so rosy.
It's not possible I'm the only one in a frustrating situation like this.

and well written. i really appreciated reading your article. as a mom of a 16 year-old with, among other things, aspergers, who had to push to get him into mainstream frameworks, and eventually moved home for lack of appropriate schooling - kol hakavod to parents who are able to push to get what their child needs, and to the community school and other frameworks who accept the child for who they are. there is so much for both sides to learn from each other when children are well integrated in whatever manner possible within their community. and it is very sad for children who are not integrated, or are pushed out of frameworks, especially those who are forced to attend schools which do not have the same value system as the family. children need to be raised within the values of the family if they are to have a strong sense of identity. and jewish kids with special needs especially need this sense of identity reinforced. may we all find appropriate frameworks so that both we and our children can feel truly supported.

I would like to add to my previous comments- in response to the person who asked if it were right to "guilt" someone into raising a child with a special need... No, it is not, and I did not get that from this article. All people are not meant to be all things, including parents, period, much less parents of a child with a difference. Perhaps because my children came to me by adoption, I have a healthy respect for a person who says, "This is beyond me. I am not able to parent this child, so I will give this child to someone who can and wants to, and perhaps is the person H"m really intends to be the parent of this child." Further...I ask you to consider... H"m may use more than one way to get a child to its intended parents and family, including adoption. If you have felt that you could not raise such a child, whether in your home or, with care and attention, not in your home, or even if you have given up -or would give up-such a child, you might want to consider why it is that you would feel "guilty" about it. Perhaps you have merely recognized your own inability to parent such a child, which may turn out to be the best thing for that child. As for the argument that having or keeping such a child is somehow "unfair" to "normal" siblings because they might have to take care of him/her someday, that could happen with any member of a family at any time. How is it unfair to expect that members of a family care for and give to each other-each in his/her own way- because that is what a family is and does, not as an unbearable burden, but as a simple matter that this is the path H"m has chosen for us, and it is up to us to make the best of it, or not?

That is not the point of this article, however. The point is that the attitude of the Jewish community and the Jewish schools toward children who are different needs to change. It is our duty, as Jews, as families, as people, to revere all of our children, all of our people, ALL given to us by H"m, and make sure that they all have respect and dignity and whatever it is that they need to become the best they can be, as Jews, as people, as members of our community, at whatever level or place in which they can participate. Is that not what we try to do for our children whom we think of as not having "special needs?" Do we not try to give support to our families in raising "non-special" children, through our schools and various other programs? Do our children with "special needs" deserve less? Of course not- but we often not only give them less, we "blame" their parents for having them to "inconvenience" us. We often don't even look at the real benefit and , yes, love and joy and fulfillment, that all of the members of a family, including siblings, and a community can derive-if they are able to recognize it- from being around and caring for such a child, even into adulthood.

Dear Anonymous,
You said, "your openmindedness should include allowing others the option to recognize that sometimes there are circumstances that just do not enable..."
1. Please read the article again. She does explicitly recognise that, but encourages exploring it more fully before making the decision.
2. If there are extenuating circumstances, as I have personally witnessed in two cases, abandoning the child in the hospital is not the only,nor the best, alternative. One can take steps to make sure that the child will go to an appropriate home, whether for foster care or adoption.

Please don't be so quick to condemn the author.

It's important that parents, doctors, and teachers focus on the individual more than the disability. With so many different disabilities, syndromes, and disorders, many of them appear overlapping, like say, how Asperger syndrome, a form of autism can be perceived as OCD due to the repetitive/obsessive behaviors exhibited...Furthermore, what's in the best interest of the individual is key, as opposed to arbitrarily placing him/her in a "special needs" program. Many individuals with cognitive disabilities can do fairly well in a mainstream setting. Indeed, it is important to remember the uniqueness of an individual more than a diagnostic label. Even a child who happens to have either autism or a certain mental illness can result in their adult counterparts appreciating the simplicity of the childhood age.

Our wonderful grandaughter, Rachel is now 12 years old. Unfortunately, we have seen teachers and administrators who are not at ease dealing with special needs children They pass their feelings to the children in the class and rather than inclusion, it is often exclusion. Let's hope articles like yours will educate more and more people. Rachel is a blessing and we are thrilled with every accomplishment she makes. Planning a Bat Mitzah next year.

I have a 20 yr old son who has Asperger's Syndrome. Very bright but lacks some social skills. But he is still a loving son, even though it is hard for him to show it. He goes out of his way to not let ANYONE know he has Asperger's for fear of ostracism; he doesn't even want me to talk to him about it. I also have a 12 yr old son who is seriously autistic. Even though here is the US, children with
disabilities must be mainstreamed into the school system, where I was living at the time they did mainstream (AZ) but not much to my satisfaction. When my son was 7, mothers of children in the classroom were invited to a pancake breakfast in the classroom. How it broke my heart as my son and I were sitting at a desk placed for us, away from the other children and only once did someone come over and ask how we were doing. We were not included in that morning's activities, although in that school this was considered mainstreaming.
There is still a considerable stigma in this country whether you have Down's, Autism, ADHD or even if you have Bipolar Disorder or Epilepsy.
My husband and I are both Bipolar, we didn't ask to be born with this, we function well, only because of the advances in science that make it easier for us through medical advances. Nevertheless, when my husband recently went to pick up his prescription at the very busy pharmacy their wasn't much privacy at the counter and another pharmacy customer overheard the name of the medication from the clerk when he was picking
it up and some man behind him asked him if he was picking up his "nut" pills and the man and another customer were having an exchange between themselves about that medication. Needless to say, we have changed pharmacies. People who do not have a disability do not understand the magnitude of having a disability and having to deal with it, day by day. As stated above, would someone tell a diabetic that they could "deal" with it or "you can skip a few doses"? My mother (may she rest in peace) passed away at 61 because of complications of diabetes. The same with others with disabilites. Their disabilities should be taken seriously and not stigmatized.
May the family in this article spend many happy, wonderful years together with their amazing little girl.

I enjoyed and learned from the article and just as much from all who contributed their comments, from all viewpoints. They were all valid. The ability to comment on these important articles adds so much value to the original letter.
A dank, ale!

Your story is so inspirational, and it hits so close to home. I was born and raised Jewish in the rural Ms. in the 1960's where it was difficult to practice at best. I also had an unknown disability, but was forced through school, etc (of course dropped out of college many times) as I had no real tools. My parents and Rabbi, though well-meaninged, decided to ignore the disability (it really didn't matter; they did not have a FDA-approved treatment for it until 2005 of which I received). Though I knew something was (very) different, I marked it down as being Jewish in a homogenous society and nothing else. Not until I was in my late 30's did the medical community, (in Washington, D.C.) discover the real problem. I have since worked on it, am 53 (went back to college, finished 3 years several years ago) and own my own business. I still have the disability, but I focus more on my abilities now. I believe Julia will make her way to, given that she has such monumental support of her parents and the Jewish community. I applaud you all, and, once again, a story comes along that reconfirms being proud of my heritage.
Good luck, Julia!
www.londonstimes.us (Rick)

I grew up many years ago, before they had special classes for people with learning disabitites. I also have a daughter who is 34 and has learning disablites and a medical problem. You must never give up hope and abandon them.
They depend on you for help and advise.
Ask others for their support if you do not know what to do Help is always around the corner.

I want to thank you for writing this. It is too hard for me to explain why without crying.

and love and kisses from England too. I have a very special Son I called Joe. He too is 9 and since he was born I knew he was different, I also knew he was VERY intelligent... what I couldn't understand was why everyone else felt he had to conform and be labelled before he could become fully accepted into my local community and especially within the education system. My Son is so special I beleive he is going to make a difference to the world when he's finsihed studying. I also beleive had the UK education system been able to accept as they were told years ago that he had a learning disability then he would still be in mainstream school and been able to control his behavioural and emotional frustrations but because of the 'text book approach' to learning and the masses of paperwork everyone seems to want to create writting about how they did their bit and he didn't fit in a box or some one 'tried' and 'did their best' ..... hello? the end result in my humble opinion is that God gave us children to be able to teach the next generation how to feel loved, appreciated and valued in an all-inclusive society... if we as parents can not find partners in the health and education 'systems' and/or help from within our communities... what hope is there for the next generation and what are we teaching them? I am so grateful to read your story Robin because now... I don't feel so excluded and alone, because I know that there is someone else out there who understands, is prepared to talk about it and try to make a difference for the next generation. I was lucky that I'd been able to work with the Infant School that taught my Joe... they were and always will be like family to me, because that's how they treated us... with understanding and love. I wish you and Julia every future success and applaud you as a Mother. Thank YOU for sharing your story. shalom Shells x

I think every Jewish child is precious. I dont live in a community yet but I can understand the arthors comments that there are some communities who do not believe in educating downs children. They could easily have an assistant working with the child to help them fulfill tasks in class.Why not. Every child deserves to be educated to reach their potential. Whowould have the heart to disagree???

1. I would encourage most families to raise their special child themselves, but sometimes it just doesnt work. Your openmindedness should include allowing others the option to recognize that sometimes there are circumstances that just do not enable. 2. Having worked in a special school, I have seen parents technically or emotionally unfit, with the special child suffering terribly and/or siblings -- or even the parents themselves.
3. Give Rabbis more credit for possibly having information or insights for their advice to parents. 4. Depending on the area, often the Social services etc do not always solve all technical and financial problems -- I have gotten plenty of reports from parents who are not finding solutions....
5. Furthermore, many mainstream day schools do not have the budget to accomodate the special needs -- &/or find that the functioning of the class is SEVERELY disrupted.
5.With all my endorsement of warm hearted acceptance, I would also want to recommend understanding the complexity and delicacy of each personal decision. Don't oversimplify.

I am a cousin of Robin -and Julia- and, while I don't see them and the rest of the family often enough, I am very proud of Julia's accomplishments and those of her family in educating and sensitizing the Jewish community. Look around - there goes you, me, all of us, our next child, or one that we already have, or a cousin, or Uncle, or a sister or brother. It is not easy to raise any child, more so a child who is "different" in some way; but the Jewish education systems and community don't need to make it harder, as still happens far too often.

It is wonderful to read of a child being included in a day school as this child is. Unfortunately, this is not always the case. Many, many children are not able to attend day schools because their learning differences are more than the schools are able or willing to handle. Moreover, if the child requires specialized services, some schools charge significant additional fees. As children approach high school age, their options, at least in my community, drop off even more sharply. Not only are tuitions extraordinarily high, but accommodations are exceedingly limited. Presumably, the author, while writing about Down Syndrome, would agree that it is the Torah way to include all Jews with differences, be they Down Syndrome, Asperger Syndrome, Autism, Dyslexia, Dyscalcula, Central Auditory Processing Disorder, Nonverbal Learning Disorder, ADHD, or any of the multitude of other differences that seem to bar our children from the doors of "our" community. There is a great deal that needs to be done to "fix" our schools and our institutions to make them more inclusive for all members of our community.

There is a girl in my class who has Downs. She is so special. The lessons she teaches those who have the privlidge to meet her are so inspiring. I think people should open their eyes to the greatness of these special souls. thank you for writing an article helping the world relize what these people have to offer.

This was a a very good informative article. Every child is special and a divine gift from above. We should also keep in mind that not all disabilities are readily visible and that all g-d's children, at least initialy deserve the benefit of the doubt and to treated with honour and dignity. My wife may have been diagnosed with a disabilty but that does not make her any less of a woman with the same hopes and dreams as the rest of us. we pray that we shall be blessed with a child aand truly beleive that g-d only gives us challenges that g-d knows we can live up to. Sometimes you must simply have faith in yourself and in a higher power. We are all g-d's children this article serves as a reminder for those who have tendency to forget.

To anononymous:
Are you the only person who thinks this way? No. There are plenty of societies worldwide who practice infanticide to rid themselves of "unwanted" children based on disability, deformity or something as simple as gender. Do families of children with developmental or physical disabilities have to reallocate resources to meet the needs of the child? Yes. I will also tell you that all 50 states have mechanisms and agencies to serve these families with everything from educational supports to social services. Does it have to be depeleting or devastating or a "burden" to the other family members or siblings? NO. The mechanism of being a family is uniting together in support. The child's siblings will take their cues from their parents, family and community. As you know, all children are born without prejudices and sterotypes. They learn what they experience. They do not have a burden. They have a brother or a sister -- a whole person to whom g-d saw fit to bestow a soul. So why should this new sibling not be worthy of the love of the most esssential people in their lives: those who most closely share their flesh and blood? Why should the brothers and sisters be deprived of the love of their sibling as well? We also have the privilege of living in interconnected Jewish communities from which we should draw support, not condemnation. To experience anything different would violate the most basic tennants of Torah. From a secular science perspective, research shows that children who are raised with "special needs" siblings develop more resilliency than their agemates. Resilliency is a skill which allows one to cope with obstacles or difficulties throughout life, making these children BETTER able to handle its challenges. It is up to the parents to ensure that all children in the family feel loved and supported, and allocate time with each of them. Is the decision up to the family? Yes. Should they feel shamed or guilted into surrendering their child out of fear? Never.

As we are all Made by G-d, of H-s Holy Essence, people appearing "different" are Formed whole of G-d.
Each human being has a unique Destiny and contribution. Born with cerebral palsy 1940 I accomplished by our Hashem's Grace, Strength and Harmony all that earlier society thought I could not do---colleges [3, graduated Swarthmore, and 3 art schools], career [worldwide, art, poetry, music, top executive], travel [world], marriage [many years], parenthood [my child studies pre-law]. All by Hashem's Will, parents [Rest in Peace] diligent in the extreme, my Rabbi, Jews and non-Jews, and fundamentally the Torah itself, from my childhood, Strengthen me and Guided me. Certainly I had to overcome, or ignore society's stigmas and stereotypes, and assuredly we are to preserve everyone's right to equality, but even more fundamentally we are to each thank our Hashem of Blessedness for what H- H-mself endowed us at birth and develop individually to our capacities, whatever they may be. We are not to be evaluated by our capabilities but simply to be embraced for our humanity, as G-d Love each of us.

Steven Sles

Maybe I"m the bad guy here but I don't think parents should feel guilted into taking care of a child with special needs, especially if there are other children. How much of the family resources can the child take? What about the other children. When these children grow up what happens to them when the parents grow old or pass away? The other children have to take them in? Is that fair to them? Am I the only one who thinks this way?

Julia is a gift from G-d, and has been blessed with a mother (and father, I'm sure) who sounds like she doing a fantastic job. At the Reform congregation here, there is a child with Down's who is fully included in all activities, too, - her mom makes sure of it.

What is for sure, is that Julia's parents are very special people. Professor Reuven Feuerstein, who lives in Ierushalaim, runs a program around the world that helps families to learn how to teach and raise kids with special neshamot. As you said, helping each other is the only jewish way

This is a wonderful article. In response to some ppl.'s well-intended ccomments that not all children can learn and progress optimally in an inclusion class, I'd like to say this: You are right, HOWEVER: why can't they be in a special class, perhaps, if necessary, but PART of a REGULAR school? I am thrilled with the rising of so many special programs to fit the needs of our special children, but I am deeply saddened that most of these programs are held in separate schools. This is bringing us back to the middle ages, I feel. Let our special children have the opportunity to learn, if not academically, then socially, from their "typically developing peers," during lunch, gym, recess, etc. and whenever else deemed appropriate for each individual child. I wonder who will learn/ gain more from whom-- the children in the "special" program, or in the "regular?"
That is my input. That having been said, I am looking for a program for children with physical disabilities, who have high functioning cognitive abilities, that is held WITHIN a regular yeshiva, in the NY area. Anyone have any information?
Thanks.

I am so glad that inclusion is working for Julia. It sounds like her parents are acting as terrific advocates for her, and she is thriving. As a social worker, however, it worries me that other parents will read this article and assume that inclusion is the best choice for their child as well, and will accept only that for their child. For some children inclusion in a standard Jewish classroom is absolutely the right choice, and parents should fight for their child's rights to receive a Jewish education in the least restrictive environment possible. But parents also need to think about whether their child might need more help than they can receive in an inclusive environment, whether they might be more able to meet their potential and thrive as a member of the Jewish community in a different kind of education environment. While inclusion worked for Julia, parents need to make sure they are considering what is best for their individual child, as opposed to assuming that inclusion in a typical Jewish school is the best choice.

I really appreciated your article "Person First Disability Later". I praise the mother who wrote it, and thank her for sharing her experiences. My step son, whom I raise has ADHD and other special emotional needs. Our 5 year old daughter, was diagnosed with Diabetes at age 3. I have much support in the Jewish Community, but rejection as well. These Children are already "different", and I believe a Jewish Heart should be a welcoming heart.

Reading your article brings tears of joy to my eyes. To read that Julia BH is doing well in an inclusion class is amazing and a big blessing that gives up hope for the future. As, we have a
2 1/2 year old daughter with "Downs". BH she is such a cute little girl who we love more and more every day, who want to learn and grow!! We are hoping to find an inclusion program-class for her in a jewish setting as we see that she learns alot form her sibblings and cousins. Again reading your article gives up hope for the future!! Keep up all the good work and love.

Down Syndrome is not the only misunderstood disease. Many people are emotionally and mentally challenged. This puts, once discovered by others, a stigma on a person that is being convicted by the community in general as a freak. Somebody you don't want get involved with. I fit that category.
I have bi-polar disorder. It is a Chemical Imbalance, over which I have no say. People tell me that if I just change my behavior and thought before I spoke or acted, it will eventually go away. This is like telling a diabetic to think positive thoughts, that their diabetes would go away.
So I know the emotional pain you and many others in similar situations go through and have to cope with misunderstandings.
But we need to speak up and not be silent. Whether it be out of intimidation, misunderstanding, embarrassment or fear, we need to let others know, that all of us are worthwile and have a spark of the divine in us.
Some of us have just been called to meet a different kind of challenge.

As a religious school teacher, I worked with many students of differing abilities. Some of my students were gifted, brilliant and talented. Some were, at best, mediocre. Others were autistic, Down's, learning disabled, or physically challenged. Yet all of them responded to individual teaching and tutoring, and each and every one of them grew up to be wonderful Jewish human beings. Those who were the most challenged often seemed to most appreciate Jewish learning. The biggest factor always seemed to be, not innate abilities, but the committment of the family. Those students whose families valued Jewish learning did well, whether "normal" or challenged. Those whose families did not value Jewish learning did not do as well, even if they were extremely gifted. That which is reinforced at home grows. Bless you for reinforcing your daughter's Torah studies!

As the mother of a young son with down syndrome, I commend you for addressing the issue of inclusion in Day Schools and Jewish educational programs. We are so lucky that our local day school preschool welcomed our son with open arms; he loves being there, and is a full and active participant. Robin, I am interested in hearing what steps you are taking to help Julia succeed as she progresses through elementary school. If you could email me theellenbogens@juno.com, I'd appreciate it! Thank you again for this beautifully written piece.
Debbie

We Jews talk a lot about treating each other respectfully within our communities. My two "normal" Jewish children were treated as outsiders and not deserving of inclusion because their parents were poor. They were so routinely excluded and ignored by Rabbis, teachers, fellow students and their parents, that I foresaw their disconnection with the Jewish community as adults. With our Torah teachings as our guide, we talk a good talk, but our leadership is sorely lacking in walking the walk. Arrogance, back-stabbing and gossip, lashon hara, and excusionary behavior is sadly becoming our collective inheritance, often beginning and blessed by our rabbis and synagogue leadership. Look within and see if community members are being treated well, and if not, don't tsk tsk; speak up and do something about it.

Ms. Meltzer's article on the experience of raising her daughter was not only articulate and profound but addressed an issue that I believe to be at the heart of the crumbling foundations of a health care system in this country. Unfortunately, we have built our medical "house" squarely upon pathology. We have forgotten the Torah obligates us to maintain excellent health. Our doctors focus entirely upon what is wrong with us, allowing the diagnosis to define the patient. In truth, we are defined by our essence, our soul, and no diagnosis will ever begin to define all of who we are and our inherent extraordinary potential. What a timely article as we approach Pesach and what a great reminder that we should all release ourselves from the bondage of whatever medical diagnoses we have ever been branded with and bask in the light of our basic health, the gift of Torah, and the beautiful essence of the Jewish soul.

Unfortunately, I can only agree with the author's comments. Why unfortunately? Because in my community (in Israel) the chareidi schools refused to accept my daughter with Down syndrome into an inclusion setting, and we had to look for different options. (This even though government evaluations showed that she was capable of being included.) (She is currently included in a non-chareidi school in third grade.) My non-religious mother-in-law asks: "I don't understand. Everywhere in America and England there is inclusion. Here, you say that these children have special souls. You say that they deserve to live as much as a non-handicapped child...... and then your community turns their back on her?!!!?"

Do you have an answer for her? I don't.

Also, the point of the child being an individual is VERY important. If I go somewhere with my daughter, people tend to see "Down syndrome" and not the individual. People assume that she can do much less than she is capable of. People also are amazed that I try to insist that she behave, even interfering and offering to buy her presents (as a reward for acting atrociously?!????)

Written with much pain and discouragment.

Robin, I am so happy to hear how Julia is doing and what progress you've made. Hats off to you. I definitely agree with your title Person First, Disability Later. I'd like to add one more thing to your title- since a person with Down Syndrome is exactly that- a person first, we need to be very careful not to speak about that person in their presence as though they are not there, as many people tend to do when around people with disabilities. Instead of talking about the person (which is very rude and insulting) talk to the person- You won't regret it! Another comment I'd like to make is that a mainstream academic environment is not always the best solution for our children. For many of our children it is in the child's best interests to be in a self contained classroom. But I absolutely agree with you that our children are entitely to a Jewish education- however each particular child receives it according to their abilities. I also think social integration is very important. Thank You! Chag Kasher V'Sameach. I'm sure Julia will enhance your Seder like nobody else can!

Thank you for your article. I am inspired by your love and dedication.

My many-years-younger-brother has autism, which makes his personality harder to find than most; thanks for reminding me to keep looking. God bless!

i have been active in the disabilities file for over 40 years and have a26 year old genetically disabled son. I have been making the same statements this article makes as have many other people with disabled children. If I can help anyone with diabaility issues pleas feelfree to give them my email address.
Thank you, Dani Feierstein, drfeier@cox.net

I have worked with children most of my life and among them, I have received exceptional amounts of illumination from the "disabled " ones. They have oftne conveyed a balance to the day to day world of raising our children to be "smart" and "socially mature". While these are important steps in maturation, I feel that they don't tell all of the story of humankind in the past or the future. You did what you did, how you did it because this is your child and you love her. This is the greatest gift these children have to offer us in the "normal" world. I know they have always spoken to me of a different reality. It is only incumbent upon humanity to develop its sensitivity toward another way of being.

Wishing Julia and her family a sweet Pesach.
Otto M Berk, LCSW

Robin, your article about Julia is beautiful. It's good to hear how well she is doing. Good luck with spreading awareness of this issue about which i have heard very little.

Your article was an inspiration to me. I have a grand-daughter with a learning disability. My impulse is to focus on the thibngs she can't do and feel sorry for her.

This article is a powerful argument showing why all Bnei Yisrael must be fully included in communal life. Robin has demonstrated that we must see past the label and outward appearances, dan lechaf zchut, and give everyone a fair chance to be the best Jew they can.

Robin Meltzer- and Julia and her sister- are cousins of mine, part of our extended family. Robin spoke with me soon after Julia was born, in part because my own family looked a bit different from most observant Jewish families in that I am not married and both of my daughters are of Korean heritage; and I had dealt with all kinds of good and bad and neutral (the best kind) of reactions to "us." I remember telling her something like "grow a spine of steel. Demand what is right for your child and don't let anybody stop you" and listening to her plea of "Don't they understand: this is our baby! We have loved her from the very first moment we knew of her conception!" I told her of the people-Jews- who didn't even think my children were "my own" because they came by adoption; and telling them, "Of course they are my own! Hashem gave them to me! How much more my own could they be?!?" (This is after both are now married, which brought me two wonderful sons and their terrific families, and four beautiful grandchildren- so far!)
Hashem gave Julia to my cousin and us, too, to be part of our family, part of our people Israel. How can any Jew, especially one who considers himself to be Torah-true not understand that? I would add my plea to hers. All of our children who "different" are still the same as the rest of us in the only way that matters- they are Jewish, and they need and deserve to be fully included in the Jewish community and to be able to learn and observe Torah to their fullest ability- and we are obligated to help them and their families achieve that!



P.S. If you don't know Julia and her family, you are really missing out- she's an amazing little girl, born into a unique and amazing family!

...the person with Down Syndrome, or soeone more intellectually "gifted"? It depends. I know many adults with Down who have meaningful friendships, a place in society, warm family life, a job, a sense of contributing to the world, and even romance. I know many so-called "gifted" people who have none of the above, but a higher IQ.
Life is not just about being smart.

We know Robin and Julia and their family and have shared some of the ups and downs. What Robin didn't include in the article and has been very important in Julia's life is that her family always expected her to behave like the lovely young lady she has become. She was given ample love and was also taught wonderful midos. Mazel tov on a well written article, and more importantly on the raising of two lovely daughters.

Best of everything and love to you, your daughter, and the rest of your family. Your story is so beautifully written, it is a picture drawn with words!

B"H I have a Master's degree in working with childfen with 'disabilities'. I was their advocate in mainstreaming matters. I got so much nachas from working with my students! Enjoy every day with Julia!

Excellent!
I would like to commend Robin Meltzer.
She and other parents like her ARE our future educators.

As a mother of 3,B"H, of whom one has special needs, I have learned that it is equally important to advocate for the siblings that are well. In our efforts to help our special needs children, we can tend to over-look the needs of our other children. They struggle with alot of guilt, need for attention and just regular "kid stuff" that may seem less important, in the shadow of their sibling's health problems. Even if they're doing well in school and seem happy socially, it's important to take time to spend with them and make them feel special too.

WHILE IT IS TRUE THAT WE WOULD NOT CHOOSE TO HAVE A DOWNS CHILD, IN A CERTAIN SENCE THIS CHILD CAN BE A GREAT BLESSING TO A FAMILY. I REMEMBER HEARING MANY YEARS AGO THAT SOME PARENTS WERE ADVISED (SADLY) TO LEAVE THE CHILD IN THE HOSPITAL. I HAD ASSUMED THAT THIS WAS NO LONGER THE CASE. THE FEW DOWNS KIDS THAT I KNOW SEEM HAPPY AND WELL ADJUSTED. MY SHUL ACTUALLY HAS AN OLDER DOWNS MAN WHO TAKES PART EACH FRIDAY NIGHT IN LEADING THE SERVICES. I AM QUITE SURE THAT HE BELIEVES HIMSELF TO BE ONE OF THE MOST POPULAR GUYS IN OUR SHUL AND FOR GOOD REASON. HE IS. KEEP UP YOUR LOVE.

Downs children are special. They are capable of giving such joy and love that it absolutely "blows my mind" that in this day and age that people still misunderstand and fear what I feel is a miracle.

If treated as real live human beings, which they most certainly are, they can flourish and grow. Most importantly, they give us a peek in what the world to come might be like. They are the only human beings who can show unconditional love and accept it too.

May the Almighty continue to pour out blessings on Julia and her parents. Julia is special in the most postiive meaning of the word.

Thank You for this article. In 1974 we became Foster parents to Bob, "both of his natural birth parents hold advanced Phd degrees, and a Down's Child was beneath them", (their words). After two years of Fostering, we were given the opportunity to Adopt. Our own Family was mixed opionated at our undertaking. Thru the years, training took longer and worked best with a definate fixed routine. Today, Bob is still home (a 7-9 years old in most ways) but able to read Torah, do word find puzzles, play simple computer games and is a great help in the yard and home. Yes, at time very trying but a wonderful package of love and trust. Ha Shem has blessed us greatly. Thank You again.