Readers: this is YOUR Reaction to Patkin's "Journey of a
Soul," Parshas Bo
Reminder: Dov Patkin has an openline support group for
families blessed with Down's Syndrome children. His address:
Kiryat Shomrei Emunim Block 3b, Jerusalem. Tel. 02- 582-
9944, FAX 02-532-5813. Email: hermany@netvision.net.il.
Ruth Palatnik in Bnei Brak is also in contact with a large
circle of Down's families and has an extensive library of
literature on the subject of special children of all kinds.
She welcomes all calls: 03-579-4996.
DEAR EDITOR,
I write as a mother of a child with Down's Syndrome. I found
Dov Patkin's poem profoundly moving and extremely
disturbing.
It is well known that in children with Down's Syndrome,
autism and similar disabilities, the power of their soul and
their ruchniyus is more evident. Are we, then, able
to confidently assert that such a special soul does not feel
enormous pain and bewilderment when it is rejected by its
parents?
I am not in a position to condemn those parents who decide
to give up their child for fostering or adoption, especially
when it is on the advice of their Rebbe. I am just wondering
how the shaala is phrased. Have the parents informed
him about the birth of their challenged child, stressed
their commitment to love and educate him to reach his full
potential, and asked for the Rebbe's brocha for
hatzlocha? Or have they informed him in despair about
their special child, voiced their unwillingness to keep the
child, their concerns about the social stigma, the imagined
negative effect on family and siblings etc. and
begged him to advise them?
From my own experience and from speaking to mothers of
children with DS, the reality is that although an enormous
amount of input is required, especially in the pre- nursery
years, the resultant progress is reflected by the efforts
invested. Parents and siblings derive unimaginable pleasure
and satisfaction when they witness their child achieving
target after target. A new family unity grows around this
child who is a focal point for happiness, humor,
chessed and the development of sensitivity and good
character traits. Once parents have recovered from the
initial shock and overcome possible stereotyped negative
emotions, they can move forward with commitment,
unencumbered by undesirable barriers.
In response to Mira Neufeld's negative reply, I feel that
she must be referring to a small minority of families with
special children. In our North London Shomer Shabbos Kehilla
of 2,500 families, I know of 17 children with DS -- from
newborn to 13 years, and only one family has given the child
up for fostering or adoption! Of course, it is a demanding
and challenging task to bring up a child with DS and one
must pray for Heavenly help and use common sense so that
this special child is welcomed into the family. Parents must
create a positive, united atmosphere in the home so that the
siblings are delighted to be involved with their special
child rather than suffering neglect and emotional trauma. I
believe that in the vast majority of homes, family members
feel that they have benefited in many ways by having a
sibling with DS. It is impossible not to love them -- they
have an extra measure of chein.
As regards shidduchim, we are maaminim and
believe that matches are heavenly forecast before a child is
born. Consequently, the fact that the family includes a
child with DS does not influence shidduchim. It might
appear so but in reality, what was turned down, for whatever
reason, just wasn't meant to be!
[Name and address withheld by request]
* Dear Mrs. Neufeld,
I am taking the liberty to answer your question, or shall I
say, give you a short excerpt of my life.
If I had known two years ago what lay in the future -- I
surely would not have believed it myself.
Dov Patkin asked me for names and places to prove my story
true: I am legally unable to oblige because, although my
heart aches to the point of breaking, I cannot divulge the
anonymity of those people involved. I have signed legal
papers to that effect.
So the best I can do is to tell you a little story.
About two years back, a friend of mine who has a DS child
was over for coffee. We got to talking about our lives, as
women do. I told her that when I was first married, we
didn't have children for a few years. I would help new
mothers with their own broods, do segulos like
drinking crushed rubies -- the whole bit! I would be broken-
hearted each month but continue to pray and wait. No, I
didn't go to a doctor. No matter how many people told me to -
- I wanted children min hashomayim, not any other
way. Not that I am against seeing doctors for women's
problems; in fact, all of my children are caesarian babies.
But this was a personal plea.
Well, it did happen. My husband and I went to yet another
Rov, got another brocha and segula and very
soon I found myself expecting twins.
My friend and I continued talking and I told her that we had
always wanted to adopt a child to show Hashem our gratitude
for giving us our own (is any child really our own?). So she
started to tell me her story of how she got her adopted
Down's child. I hadn't known he was adopted.
She works with social services in Israel and finds homes for
abandoned Jewish children, all kinds, but mostly DS. Of
course, I wanted to know more. Was it intrigue that I was so
spellbound by her story? Was it the nosybody in me? Was it
the beginnings of outrage that kept me entranced? How could
she blatantly talk about well known poskim, rabbonim,
Chassidishe Rebbes? She calmed me down and assured me
that yes, her child had been abandoned by frum people
and that the Rov had encouraged the family to give him up
for the sake of their other children. The question comes to
my mind: if a father has to run to a Rov to ask whether he
should bring home his own child -- what do you think
the Rov will answer?
I was too sick to believe that her adopted child had been
given up. Just because he was Down's? Was this not a child
like any other child, who needs to be loved and protected?
Don't all shomrei mitzvos believe that we are in this
world to mend our faults? That everything that happens to us
is from Heaven? That our children, each and every one of
them, are jewels that have been placed in our care? Each
family has been chosen to raise their children with
responsbility to our Creator. DON'T WE BELIEVE THAT? How can
we judge a person by his exterior or by how rich or poor he
is, or whether all of his children are "normal?"
Some time later she called me and said, "Remember how you
told me that you wanted to adopt a child?" "Yes." "Well,
here's your chance." She proceeded to tell me about a
frum family, respectable and honorable, who "cannot"
take their DS baby home.
"WHY?" I asked. "Is the mother ill? Is there something wrong
with the family?" "Oh, no. Nothing at all wrong. They are
lovely people with other children at home. Their spiritual
leader does not let them bring the baby home." (For the good
of whom, exactly, I ask.) That's all she said.
Well, not really. She also told me more about abandoned DS
children that don't get adopted or put in permanent or at
least temporary foster care. Jewish care -- I'm not saying
religious care, because many of them go to non-religious
homes for lack of religious ones. And for the record, the
social services does try its best to place children from
religious homes with similar families. There are just too
many children. But worse, many religious parents simply
don't care where their children grow up. (Of course this is
not the rule.) I know of a family that pays another
frum family privately to raise their child and keeps
in touch with him. I also know others who couldn't care
less...
The general attitude among the abandoners is: "The child is
retarded anyway, right? He's not obligated in
mitzvos, right? So as long as he is physically taken
care of and our family won't suffer from the strain of this
child, there's no need to worry about his `soul'."
WRONG! R' Shlomo Zalman Auerbach ztzvk'l ruled that
Down's Syndrome children ARE chayov bemitzvos!
So where do all those children go for whom homes are not
found? They are lovingly taken in and given excellent care
by the MONASTERIES. My friend semi-hysterically told me that
if I don't take this baby, she's on her way there too! After
all, the hospital isn't a hotel or a babysitting agency. The
baby has many other physical problems besides being a DS
baby and there is no other place, so that's where they will
send her. The head doctor of the ward later told me that, in
fact, this was true. Although I cannot reveal the name of
this particular monastery, the care is excellent and their
crosses are very large, some wooden, some even gold. The
sisters in charge are dedicated to saving Jewish souls and
raising good Christians. I have personal experience with
this, but that is another story altogether!
When I told my husband the story about this abandoned baby,
he replied, "What's the question?" When we went to a Rov, he
replied, "What's the question?" We would take her home. It
wasn't as simple as that, however. The red tape was endless,
frustrating and at times degrading. You'd think someone was
doing us a favor. I wonder if the monasteries have to go
through so much red tape!
There were many questions, the uppermost one being that this
was the child of a frum family. We were shocked.
Unfortunately, the answers are vague and flimsy which I will
gloss over. When we first came to get the child out of the
hospital, I blocked out these nagging questions of my own
yetzer hora. What if she's a monster and the
children will be afraid of her? What if the workload is too
heavy, with my own large family? After all, she has so many
medical problems. I'll be forever running around for
physiotherapy and doctor appointments. Who am I kidding?
Some days I don't manage at all! The cooking for eight
children: my kids walk to school and back so that mealtimes
are a full house every day. The laundry alone is like I'm
running my own laundromat. The shopping: seems like I'm
always shopping. There's always an appointment for the
dentist or someone has an ear infection. Someone's hitting
someone in cheder and I'm calling to work out a
solution. I don't know!
There are a million things that never get done! Like the
albums. The pictures are in boxes, hundreds of pictures. I
keep saying, "This week I'll sort them and get them neatly
into albums." Well, maybe next week I'll start.
What about my graphics course? I'll have to work out a new
schedule. What about shidduchim? What kind of family
will we have to take with us having a Down's child?
O.K. Enough! Coming back to my senses, I realized: my house
is clean enough. I'm a good cook; the kids are basically
happy types. I have a washer/dryer and the sun here dries
faster than any dryer! Albums shmalbums! My grandmother had
pictures in boxes as long as I can remember and she seemed
happy about us dumping them on the floor. How stupid of me.
Good bye, yetzer hora. Good bye! We wouldn't want the
kind of family that wouldn't want us with a Down's child,
anyway, now would we? Any family who thinks he has a
guarantee on the outcome of his "normal" child's life is
completely not living in reality. Any family that thinks
having a Down's child is a curse -- we wouldn't want them,
either. We have so much to be grateful for!
So my husband and I decided that come what may, we would
help this little sheifala grow up, no matter what.
Editor's Note: While it is certainly true that many
people and families may not be living up to their
responsibilities and capabilities, there are also families
where the situation is, for example, such that they can
hardly manage even with their previous situation, and this
birth may overwhelm them to the point that the other
children may be in serious spiritual danger. The rabbonim
weigh these issues and reach their decision and it is not
always possible for a third party to second guess them
accurately.
[To be continued next week to its happy present-day
conclusion]
* Patkin continues his response to "The Other
Side of the Story"
"...articles crop up in the press of how 'wonderful' it
is to be blessed with a 'special' child. I have asked quite
a few mothers and they all say they are very pained by these
articles..."
The Chazon Ish stood up for such special children,
explaining that it is a great zechus to be the parent
of such a pure soul.
If you wish, I can introduce you to many parents who will
'bore you' with all the accounts of Yiddishe nachas
they experience.
You speak of pain. I feel your pain and only wish you could
be freed from your pain by meeting some of the 100 joyous
families that I have become closely acquainted with. You can
contact them and discover this truth for yourself.
"... the myriad medical problems..."
As far as I know, the children receive very adequate T.L.C.
The fact of the medical problems has only increased the
T.L.C that the child receives. This did not result in the
other children receiving less care.
I am very sorry that you seem to have met the FEW people who
have not been able to provide that love and attention. We
are all at fault in these cases -- for we should have given
help and chizuk to these families.
Despite different problems that they face, I have not found
any parents who felt they could not cope. Certainly it is
not always easy, but with normal children the path can be
just as rough. All the families I know express an attitude
of positivity in their raising the Down's child and the many
benefits that the child adds to family life. Sometimes the
problem with those who opt out is that they lack the will
to cope.
"I object to your poem implying that DS babies given up
for adoption are lost to Shmad. I doubt that any Rebbe or
even religious parent would ever use such a non-
option."
The poem was not addressed to all situations, only to a
particular case. Unfortunately, it does happen, more often
than one would imagine, and the poem aimed to alert us to
this problem and reality. Parents should not act too quickly
and make unwise decisions.
[And finally]
"Only Hashem knows why He sent this additional bonus their
way."
Surely this means that it is the will of Hashem that these
parents CAN cope with the situation and will even grow from
the experience. The point is that if He did sent the child
to those parents, they should at least take it home and give
their every effort to successfully raise the child.
[And two short poems by Dov Patkin]
YOU ARE INVITED
You are invited
to look more deeply
beyond "achievement skills"
You are invited
to look more deeply
beyond a dulled exterior
You'll catch a glimpse of
A beating little heart
A yearning Soul
You are invited to rejoice
to be really alive
You have a chance to grow.
*
ONE THING SHE WILL NEVER DO
With all her disabilities
she will never cry
that we are
her parents...
I hope...
For all her disabilities
She is quite a good
Therapist
["UPSIDE on DOWN'S" will continue for as long as you readers
write in! And we have excellent material on file!]
