The honest truth...

Dear Mrs. Sander,
In January, my husband and I became parents, through Hamaspik agency, to our seven-year-old daughter. She has Down syndrome. Boruch Hashem she is high functioning to a degree that she often amazes me with the many 'Regular Ed' things she says.

When she first joined us she was in a public school program. We were able, only with the help of Hashem, to place her in the only Jewish school for children with developmental disabilities. However, my husband is upset by a few things and wants to start a class for her that is 'heimish'. He wants the primary language spoken to be 'Yiddish' and that there should be more of an emphasis on Yiddishkeit. Somebody told my husband that he sees these children as the simple Yidden of eons ago.

I read in one of the issues of your magazine, which I had taken out of our Yiddishe library, that you started a yeshiva for your son. Is there any information or pointers that you could share with us? Right now we are still at the "if" stage. We need to first find a place to have the class/school. My husband only is interested in taking therapies and perhaps transportation from the school district. So the school needs to basically be on an existing school site. Also, we are concerned with the fundraising. We know parents cannot be expected to pay the $30,000 my daughter's school is asking. We do not like being placed in a situation where we are getting a scholarship and therefore are beholden to the school. We figure tuition should be around $10,000 - $15,000, which is still a lot. However, that means money must still be raised. My husband is great at the back office, paper work type of jobs, but is not a fundraiser. Do you have any suggestions for this as well?

I am also a little bit concerned about her future. One lady at Hamaspik told me the adults usually end up repackaging food. One young lady can read and helps sort books at a school library. Somehow I feel my daughter can do more. Someone told me not to worry about it as the world will be different in 15 years. What are your thoughts on the matter?    

Leah J.      

Dear Leah:
Thank you for writing and telling us about your wonderful new daughter.

I am humbled by your inquiry about our yeshiva program. I wish I can tell you without any reservations "Go for it!", but that would be unfair and even dishonest of me.                            

Yeshiva Bonim Lamokom was born out of blood, sweat and tears. Would we have known ahead of time what it entailed, would we have embarked upon it anyways? Most likely. For us, it was an emergency! However, if your daughter is in an existing Yiddishe special ed program, you should really think very hard whether you are ready to go through what it takes in order to 'improve' upon what is already available.

It is also important to be realistic. You write that you would like your daughter to be in a more heimish place where Yiddish is the main language spoken. In my personal opinion, that is not reason enough to open a new educational program. I can understand your strong desire to want to carry over your chinuch from at home, but with all due respect, we know that our children will most likely not grow up to be Roshei Yeshiva and/or Mechanechesim (?spelling?). Those positions in the heimish world would definitely warrant that they speak a perfect, flowing Yiddish. There are those who like to use the expression, 'Our kids will most likely not grow up to be rocket scientists'. Yet, if we are lucky, and they do, then they certainly need to speak English well!! In all seriousness, contrary to what I was told when Moishey was a toddler, children with Down syndrome DO pick up well on languages, and it is NOT necessary to restrict your daughter and her educational/therapeutic providers to only one language as a means of communication. Therefore, it is totally appropriate for your daughter to speak English for most of the day and still speak a perfect Yiddish when at home. This way you have the best of both worlds.

Finances are a major drawback to running a special ed school. Our annual budget is astronomical! The parents are paying a hefty tuition (which is partially reimbursed by Carter Funding, a tuition reimbursement program) and there is still a gaping hole at the end of every month. We try to fundraise, but it is tougher than tough.  My husband is growing white hairs at an alarming rate.

Of course, the rewards of the yeshiva are priceless B'H! Moishey is a budding Talmud chacham who loves to learn and enjoys attending yeshiva every single day. To witness a day at Yeshiva Bonim Lamokom is to elevate one's soul tenfold.

My message to you is that you should weigh very closely your true need versus expectations that might not even be attainable. If a child is in an educational setting that is totally inappropriate and the child is not making any strides academically, socially, religiously, etc., then it is time for the parents to act. But, if your child is in a good program, but you would just like for it to be more 'heimish' with Yiddish as the first language, well…..keep reconsidering. It is a daunting project to open and run a special ed program.

As for your concern about your daughter's future: Please don't let anybody tell you that you are looking at such bleak prospects as strictly assembly line work. This is a new era for the Down syndrome population. Our children's capabilities are becoming more and more known as we believe in them more and more and push them to reach their potential. In our yeshiva we have introduced a vocational program for the older boys. Each, according to his ability, goes out every week to various places of employment to do what he is best at doing. Moishey is great at paperwork. At home he goes through a case of Staples copy paper in no time. He loves to write, type and print, make booklets, collate, staple, etc. Therefore, his vocational skills take him to the agency which provides therapy for the students at our yeshiva. There, at the offices of the providing agency, Moishey is given a desk and he scans, files, staples, collates, etc. the paperwork that the agency generates. Moishey is in heaven doing it and the agency is 'zich mechaya' with his diligence and efficiency. We certainly see a very intelligent, productive future for Moishey. He also loves anything and everything having to do with newspapers (especially reading them). Perhaps one day he will run a newsstand? Perhaps he will work in an office?! Don't be nervous or scared; we feel the possibilities are endless. We are also hoping to marry him off IY"H; we feel that Moishey has very many qualities to make him a kind, and loving marriage partner. We understand, of course, that such a union would require some supervision on our part (and on the part of the mechutanim) but we feel it will be in Moishey's happiest interest (in fact, we already have a couple of shidduchim lined up for him!!).

Hatzlacha in raising your daughter and may the Ribono Shel Olam send you 'siyata dishmaya' in all your undertakings on her behalf.

Sarah Sander

This article first appeared in issue #13 of Down Syndrome Amongst Us

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