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By Diary of Forty-Three Years of Prayer

Dear Sarah Sander:
It is now five months (Oct. `99) since my brother Yechiel Yosef was born. Yossi was
diagnosed with Down syndrome, along with many other complications at birth.
`Boruch Hashem` Yossi recovered and is now at home with us.
The reason why I am writing to you is to ask for advice. I`ll give you a little
history and background about myself. I am eighteen years old and the third of a
large family KA"H. Yossi was born on `Shavuous`, which was three weeks before his
due date. At the time responsibilities fell heavily on me, being the oldest at home.
On `Motzei Shavuous` my father sat down with us and told us all of the doctor`s
suspicions. The situation was very critical then and Yossi was in ICU for two
months. By now Yossi has only a feeding tube left (`only`, in relation to all he went
through).
In the beginning it was hard for all of us, especially my mother, but with a joint
effort we all came to terms with it and we can`t imagine how it was before Yossi
was born. Although he is still young and new to us he is adorable and loved.
I got hold of your magazine from a friend and I think it is amazing. However, it
left me thinking that maybe we`re not doing enough for Yossi at this stage of his
development. Although there is Side by Side here in London, it is only for the
children of schooling age and not preschool or babies. I feel that although Yossi is
kept busy with all the toys and brightly colored objects, he is not getting stimulated
enough. It seems from DSAU that there is so much to be done at Yossi`s age yet I
don`t know what. My mother is busy with the other children KA"H and therefore
regards Yossi as an easy baby and is happy when he is content. When feeding him
with the tube, my mother stimulates him and talks to him, yet I don`t think it is
enough.
There aren`t any programs here as I saw advertised in DSAU, and I would like to
start something for babies with Down syndrome. There were at least four children
born with DS since `Pesach` in my neighborhood and I just feel the necessity for
some kind of program here. It is for this reason that I`m writing to you. Please,
could you advise me with your experience as to what would be appropriate in this
case?
I will also take this opportunity to thank you for your amazing work which has
helped countless people all around the world and the `Ribono Shel Olam` should give
you strength to continue it, thus benefiting `Klal Yisroel`.
Thank you,
Chani Rothschild
London, England

EDITOR`S REPLY:
Dear Chani:
Thank you so much for your heartwarming letter. Letters from teenagers have a
special place in my heart.
First, `mazel tov` upon the birth of your brother. I can only tell you that great
things await you and your family, `B`ezras Hashem Yisboruch`. Our family life with
Moishey is so wonderful that I wouldn`t have it any other way, given the choice.
The beginning is tough on everybody. There aren`t many close family members who
smiled upon hearing the diagnosis of Down syndrome of a newborn baby. However,
as the emotional crisis passes, and sometimes there are medical crises too, things fall
into place so beautifully and life takes on a much richer, deeper meaning.
You express a valid concern about your brother`s care and progress. However, there
is no need to worry. In a large family, siblings are the best therapists, teachers, and
stimulators. Even here, in the USA, where infant stimulation programs are so
popular, it is only speculation and assumption that babies who receive various
therapies from shortly after birth, will do better eventually.
You are so sweet and ambitious; however, it is not easy to set up a program for
babies. Therapists charge between $75.00 and $100.00 per hour. If the English
government has not yet decided that this is what babies with developmental delays
require, how in the world are you going to fund something like this? At least, we
American citizens don`t have to pay for these services. Our `malchus shel chessed`
(government of benevolence) picks up the tab.
Perhaps you should speak to some of the parents who do have older children and
those children are already attending Side By Side, and ask precisely those parents
what they did with the babies when they were infants. These parents will be your
best guides.
Do remember that babies with Down syndrome are babies first. Their disability is
secondary. We have to treat them as babies and give them the space and freedom
that normal babies deserve. I sometimes felt that my Moishey was over-stimulated
and driven crazy by his rigid therapeutic schedule. His naps were disturbed, his
meals were disturbed, our bonding time was disturbed - all in the name of
stimulation. I think nothing would have happened if he had had less of that
professional stuff and more of the mushy Mommy stuff. It probably would have
done me more good too and relieved some of my stress not to have to deal with so
many therapists and sessions.
Just you and your siblings, continue to love and hug and kiss and play with and
sing to Yechiel Yosef. Do what you possibly can, but don`t beat yourself up about
things that are beyond your control.
`Kol tov` and `hatzlacha rabah`!
Sarah Sander

Dearest Surika:
I have a good friend who has a baby sister with Down syndrome. My friend read
some of the articles in Down Syndrome Amongst Us and was strengthened to
continue with her family`s ongoing challenge.
However, while she was leafing through the pages of your last issue a certain
advertisement left her speechless. This was the display of Down syndrome dolls that
are available for sale. My friend really wondered what the purpose of these dolls
was. She also pointed out that the tongues of the dolls in the ad were protruding
from their mouths. It bothered her immensely. She said, "Is this what these children
are all about?" Obviously, there is something more precious and pure about them.
Therefore, my friend asked me to write to you. Perhaps there is a reason for this,
which is unbeknownst to us.
Thanking you in advance -
Your cousin,
Fraidy Weiss

Editor`s Response:
Dear Fraidy:
Thank you so much for writing! I especially appreciate letters, comments and
questions from teenagers. You, our youth, are our future, and it is important for you
to be educated.
You pose an interesting question. I will first give you my opinion about this and I
will then add the comment that Ms. Helga Parks, the importer of these dolls, wrote
in response to your letter.
I am a very realistic person and I see things the way they are. There are some people
out there who prefer to view the world by being selective - they will see what they
want to see, and when they don`t want to see or acknowledge something they will
behave like an ostrich - they will stick their heads into the ground so that they don`t
see what they don`t want to. Unfortunately for those people, whatever they wish to
blind themselves to, has not gone away. That `something` is still there; just they are
not there.
Children with Down syndrome exist. They have certain facial characteristics that
come along with the syndrome. To deny that would be to deny that they have Down
syndrome at all. However, to acknowledge it does not mean that one is poking fun
at them or demeaning them in any way. One is just facing reality.
I, personally have purchased two of those dolls as gifts for children with Down
syndrome. The child in Europe who received it adores the doll and plays with it all
the time. Does she know that this is a `Down syndrome doll`? Most probably not.
She would have loved any doll. However, if she plays among `normal` children and
they are exposed to this doll, it might open some interesting channels of
conversation that can lead to educating young children.
Here is the comment that Ms. Parks wrote via e-mail: As far as my dolls go, I have
had a very positive response from the internet for the holidays and received several
e-mails thanking me for distributing the dolls. This shows me that there are many
families out there who understand that these dolls are created without presenting an
insult to the Down syndrome population - as your reader pointed out. By working
with several medical professionals here in the area, it is always pointed out to me
over and over that many parents (of normal children) are in denial and do not want
to be reminded of anything with Down syndrome features for a child. That is their
choice, which I respect. What counts are the several hundred parents whose children
were ecstatic about the dolls.
To quote Ms. Parks as a finishing punchline, "Not every doll must look like a
Barbie."

Dear Mrs. Sander:
Several years ago, while browsing in Eichler`s Book Store in Flatbush, I came upon
your extraordinary magazine, Down Syndrome Amongst Us (the third edition).
Needless to say, I wanted to read more. Some time later, I was able to purchase your
most recent issues #7 and #8, but I still wanted to get all the back issues. Luckily, in
issue #8, you advertised that the back issues can be purchased by mail and that is
exactly what I did.
This past Erev Shabbos, Issues #1, #2, #4, #5 and #6 arrived! I know that probably
all the accolades possible have already been used to compliment you and your
wonderful magazine, but I would like to just add mine. Your warmth, sense of
humor, vast experiences and knowledge, all with a great sense of humility (Ed. Note:
Even when I publish this letter? Am I still humble?) add up to a marvelous `mussar
shmooze` with every article written. You have literally become everybody`s friend
and confidante. I addressed you as Mrs. Sander in the salutation, but I feel so
comfortable calling you "Sarah".
I have worked in the field of special education in the NYC system for more than
twenty-two years and have seen the growth of services for special needs children
that are available. Your approach to the subject of children with Down syndrome
helps families with these youngsters deal with their responsibilities with a healthy,
positive outlook. It also helps those who do not have children with special needs be
more accepting of them in their communities (especially the frum community). We
are all helped to rise to a higher `madreiga` through all your efforts.
On a more practical note, I was very interested in your opinion regarding
inclusion/integration of special needs children in the mainstream. Although the trend
today appears to be in that direction, I wholeheartedly agree with you that, WITH
EXCEPTIONS OF COURSE, children with special needs feel more comfortable and
are happier when they are with children with similar abilities and interests. I fully
understand the fact that building good social skills comes from appropriate role
models, but who says that "normal" children are always the proper role models. They
can be cruel, callous and very hurtful. Also, one wouldn`t consider placing a person
who can only do simple math into a college calculus class, so why do we insist on
placing children with lower mental capacities together with children with average
and/or above average cognitive skills. It, oftentimes, just lowers their self-esteem
even more than they were before these experiences.
On another note, several readers suggest that you expand your magazine interests to
include other areas of exceptionality such as autism, attention deficit/hyperactivity
disorder, etc. I feel that the needs of an autistic child and the way one affects his
family are very different than that of a child with Down syndrome. Although the
chizuk you give can help anyone in any difficult situation, a separate publication
geared toward children with autism within the frum community is also long
overdue. With the inception of a school like "Shema Koleinu", possibly such a
publication might be a reality quite soon. As far as AD/HD, diagnosis of this
disorder is nowhere as exact as that of Down syndrome or autism and the use of the
term may very well be overused at times. A whole other approach to this problem
seems appropriate. That, again, is not to say that there aren`t similar behaviors
exhibited by children with Down syndrome, autism and/or AD/HD.
Sarah, your own children are so fortunate to have you as their mother! And Klal
Yisroel is lucky to have you as our dear friend. Keep up your magnificent work.

Sincerely,
Reyna Hisiger

This article has not yet appeared in a printed issue of DSAU

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