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19 Adar 5761 - March 14, 2001 | Mordecai Plaut, director Published Weekly
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Home and Family
UPSIDE on DOWN'S

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!]

 

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