Dear Sarah,
Thank you so much for a most beautiful winter edition, Issue #27. I really enjoyed reading it. Each issue outdoes the previous one.
I especially enjoyed “On the Double…” It made me pause and appreciate all the gifts our daughter, Rivky, was b’H blessed with; no cardiac issues, hospitalizations, trauma, etc. May Hashem continue to bentch Yossi and Levi “on the double”!
Why am I only driven to write when I want to raise an objection? Good question, but that is the unfortunate reality, so here goes…
I was very bothered by the essay written by young Goldie Steinberg, “Special in Every Way”. I found the tone of the article extremely condescending and judgmental of families who make the heartbreaking decision to give their child with Down syndrome away to another family to raise.
Please don’t get me wrong. I whole-heartedly agree with the message of the article. Our Rivky is the sunshine of our home, the light of our days. It would be difficult for me to fargin another family the pleasure and joy of raising her.
However, I strongly feel the tone of the article did not take into consideration the harsh yet absolute reality that we are so very familiar with: Let’s face it: MOST MOTHERS WHO GIVE THEIR DS CHILDREN AWAY DO NOT WANT TO GIVE THEIR CHILDREN AWAY. Well-meaning Rabbonim, stressed husbands, embarrassed mothers-in-law, worried parents, you name it. The pressure comes from all sides FORCING the overwhelmed, emotional kimpeturin into a situation she tries to fight with all her might. Rivers of tears are shed while these agonizing decisions are made and buckets of tears continue to be shed over the painful conclusion.
Why are we pouring salt onto their wounds by printing sentences that are so uncaring and antagonistic? Mrs. Sander, you must have spoken to hundreds, if not thousands of women whose hearts were literally torn out as they took these heart-wrenching steps. Given free will to follow their emotions they would hug their babies tight and never let go. In the few years since I’ve been privileged to join the ranks of “Mommies of children with DS” I myself was in touch with quite a few new mothers who reached out during their first few vulnerable weeks and it is clear to me that on the most part Mother (and siblings) feel very strongly about KEEPING the baby.
Here are some sentences that caused me to cringe as I imagined them being read by mothers and siblings of children who were “given away”: ‘Would you ever want to be disowned by your own family?’ (accusing) ‘They are definitely no less than your house and money which you hold onto tightly.’ (judgmental) ‘He chose you as his mother, and you want to give him away? How could you? How can you ever think of giving him away?’ (laying on the guilt) ‘She can’t just wave her hand good bye to her own flesh and body.’ (ridiculing) ‘A mother should care enough about her children’s feelings. She would never want her mother to give HER away.’ (condescending) ‘It’s only right for you to respect his choices.’ (guilt again)
In addition, I felt this article had sentences that unfairly disqualified the amazing care many foster homes give to the children with Down syndrome they lovingly care for. My daughter has a classmate who lives with her foster family since birth and each time I have the opportunity to observe the beautiful mother-daughter relationship they enjoy I am amazed. I don’t think this mother deserves to read these sentences: “The love from a different parent does not compare to the love of a true parent.” Or, “It doesn’t compare to the love his real mother could show him.”
I am quite sure the hard-working, devoted foster parents of children with DS read the DSAU cover to cover in an effort to gain information and chizuk for their ongoing commitment and dedication to their foster child. I think they deserve an article of recognition from time to time. They didn’t take away the child from his or her parents, but rather stepped in to fill a void and are doing a most commendable job. They certainly don’t deserve these put-downs.
Our opinions, beliefs and life experiences should be promoted in an effort to make new parents see the beauty of the child with DS and to allay the family’s fears and concerns as much as possible. However, they can be done by stressing the positive and highlighting the ‘ups’ instead of using disparaging and critical language. I believe our message will hit its mark among all readers when it comes from a place of caring, sensitivity and understanding.
As a positive example, I would like to bring attention to the article “Hold on to Them’ on the following page. Also, by a young sibling, this letter explains why her family enjoys her sibling without judging those who decide to do otherwise. I appreciate the respectful tone of the essay.
I thank you for giving me the opportunity to express my opinion. I hope it is not coming across in a critical way chas vashalom. Your work is outstanding and it is only because I think so highly of the DSAU publication and because I know how much encouragement, chizuk and information parents throughout the world, including myself, draw from each sentence in each issue that I make the effort to bring this to your attention.
With my greatest respect and wishes for lots of continued hatzlocha,
- S.
P.S. I enjoy your daughter’s company in the teacher’s room where we both teach. No visible scars of ‘sibling with DS’ – plenty of visible growth!
P.P.S. Just wanted to point out how much I love the ‘Up Syndrome’ jokes. The back-cover text from Moishey about the ‘nivel peh’ is outstanding. A great lesson for all ‘normal’ adults who can’t seem to make a joke without putting ‘something’ in. Love it.
Editor’s Response:
Dear R.S.
You know how they say – ‘Out of the mouths of babes…’? When I read Goldie Steinberg’s essay for the first time I felt like I was reading mussar from Hashem, and Goldie, a young child, was the vessel transmitting that neviyeh.
This is a heavy topic; it is fraught with pain and discontent. It is also fraught with deception, arrogance, and lack of true emunah.
If not for us being the only segment of society that gives up these children, you might have gotten me there. But in a world where we feel smug enough to consider ourselves superbly pious in our Avodas Hashem, meticulous in our observation of chumros, scrupulous in being nizhar hamitzvos, assiduous in our tznius and flaming in our emunah and bitachon, we have the nerve to challenge Hashem’s decisions. We are smarter than He is. He made a mistake by giving us this child. He created foster parents who need our children. Blah, blah, blah. To be able to swallow the fact that a child was ripped away from its family because of a grandmother’s/shvigger’s demands, a deceptive new father who ran to his Rebbe and said all types of untruths about these children – and we need to be sensitive?!? Will a married daughter kowtow to her mother when she demands that another child in the family be given away? Since when do grandparents control the destiny of their children’s children? Why doesn’t the family stand up against this lunacy? And if a husband engages in deceit, won’t a wife talk to his Rebbe herself? Why trust him to go on his own and sell the Rebbe a pack of lies about his wife’s incapabilities, his family’s imminent dysfunction and this new baby’s ability to bring them all to their knees? Why are we giving in to all of this and then feeling sorry for the holes in the heart and ‘rivers of tears’ that have been created? This is catastrophic! And it is not becoming any better. After years of encouraging, sweet-talking, publicizing our children so that society can see the truth, babies are still being given away in large numbers.
I spoke to the mother of a baby with Down syndrome. She told me that her close friend also had a baby with Down syndrome and was forced by one of the couple’s parents to give up the baby. Now, when the friend talks to this mother, she tells her, “You are causing me to transgress ‘Lo Sachmod’ (do not covet), each time I talk to you and think of my own baby who was torn away from me.” This mother tells me, “My friend is the most capable, energetic and loving person in the whole world! Her heart is big enough to raise not one child with Down syndrome, but a dozen! And look what has been done to her. Her radiance, passion and love of life have been extinguished. Isn’t it ironic that this decision was made to ‘save her’ and it has actually destroyed her?”
I keep hearing from foster parents who feel incredibly sorry for their children’s biological families, who are missing out on the joy and nachas of raising them.
It seems like those sugary articles are not accomplishing their goal. Perhaps by calling a spade a spade, we will start gaining traction.
P.S. Shortly after writing this response to you, we received a letter from Eretz Yisroel, written in Hebrew by the mother of a child with DS. The letter was forwarded to us by the avreichem who were referenced in the Editor’s Message in Issue #27 of DSAU. I felt it strongly echoed my letter, as well as the following letter from Goldie’s mother. It appears as the last entry in this segment on ‘Confrontation’.
Goldie’s Mother Responds:
As Goldie’s mother I would like to respond to your letter.
We had the “privilege” of having 2 children with Down syndrome stay by us until a permanent home was found for them. We have seen first-hand what “well-meaning advisors” and meddling, embarrassed in-laws can do to a young couple. My daughter has seen first-hand the tears of a mother handing over her baby to me! It was unbearable and children see it for what it is! They heard her anguish, they heard how it broke her and that she was forced to do it AGAINST her will. I heard all the reasons in the book. It won’t be good for their marriage, it will be so hard to raise. But Goldie saw first-hand how heartbroken the mother was; she was not the same person after her baby left home. She was fearful, sad, never wanted to stay home alone, and developed strained relationships with her family. Children see the world without filters. We didn’t help her write the article; it came straight from the heart of a child who was so devastated watching this mother fall apart. This new Mom wanted to keep the baby so badly. She begged and she pleaded, but was told there was no way! I will never forget the feeling of seeing her by my door handing me her baby with tears streaming down her cheeks, kissing him for the last time. I couldn’t bear her pain!
I also have a child with DS and yes, life is never the same. It is hard, but the choice should NEVER be someone else’s. Hashem makes no mistakes! Everyone gets what they are destined for! Giving away a child with DS is like telling Hashem ‘this is not what I signed up for! I can’t deal with this!’
I know there are times when children with DS cannot live at home due to severe illness, etc. But it became the new “trend” to just give them away because there are so many people willing to take them. Nobody would ever think of giving away any other child with any issues. I have yet to understand that decision. There are parents out there that have children with so many severe disabilities and sicknesses and they would NEVER think of giving them away! This article was coming straight from the heart of a child. She sees the truth. It wasn’t meant to be condescending or judgmental. It was pure and real. I hope you could see it for what it was. Maybe it could be an eye opener for the world out there.
Goldie’s Mother
I would like to share some of my thoughts that I’ve been thinking for the past couple of years, hoping it will benefit others.
Everyone agrees that when a baby is born and the parents are told that it has Down syndrome the shock and grief are massive, no doubt. The distress and pain are huge. The question that begs to be answered is – Where do we take things from here?
Plenty of couples manage to pull themselves together after having mourned the loss of their dream of a normal child and are then successful at raising the child with dedication and love just as any other child Hashem would have given them.
On the other hand, though, plenty of newborns with DS are left in the hospital until foster care is arranged. Of course, I am not judging anyone; I am just writing from a place of profound pain and deep wondering…
How?!
How is a Yiddishe Mama, a frum mother who grew up on the wings of emunah, able to abandon her vulnerable newborn and hold back from it the maternal love it deserves just because it has slanted eyes and a slightly longer tongue?
Some go even as far as preventing the new mother from bonding with her baby so that she will not have a hard time giving it away later on.
It is awful to think how a Jewish heart can hold back from a pure little baby the basic needs like a mother’s love, cuddling, milk, etc. for her own selfish interest and all so that the separation should not be too hard for her…Who is matir this?!
No one in their right mind would think of leaving a newborn alone even for a short hospitalization. Someone will stay with it around the clock and care for it, but if it is a baby with DS you just leave it behind and walk away?
Everybody knows nursing staffs are overworked, but they are now supposed to have pity on this little unwanted innocent child and be kind to it on top of all their duties. The nurses, do, for the most part, try their best and sometimes they even get volunteers (mostly secular) who understand the vital importance of human contact for those poor little babies and that’s how there is a situation where a little baby from a frum Torah-observing home is left to the mercy of good people who didn’t grow up on the wings of emunah, creating an even greater chilul Hashem.
Who is taking responsibility for this?
When we, as parents, raise a child with special needs we are making a few statements:
We trust in the Ribono Shel Olam and we know for sure that everything He does is for the good and that He knows exactly what’s good for our family and for our child. We’d never give a baby girl up for adoption “because we wanted a baby boy” or a triplet to a foster home “because it’s just too much”.
We are always ready to encourage others in all sorts of crises: sick child, kid going off the derech, etc. Then, we all know that Hashem does not give someone a nisayon that he cannot withstand. Somehow, when it comes to a sweet little baby with Down syndrome, it is as if chas vesholom Hashem got mixed up? Wrong family? Couple too young to deal with it? Too many kids in the family? Do we really know better than our Maker what’s good for us?
Where is our emunah? Would we consider not raising a child because it might get too hard later on? Has anyone thought ‘maybe I was given this normal baby just in order to give him up for foster care?’ Do we make a cheshbon of ‘how much marrying off this child is going to cost us’ or are we just trusting that Hashem will help, which He always does?
What sin has a child with DS committed that its fate is doomed from the onset? Is it because we already know that he is going to be limited cognitively? So, if we discovered that a child’s cognitive abilities are lower than average, let’s say at age three, shall we just leave him at the clinic where he got the diagnosis? What if a child gets a serious head concussion in an accident? Should we just leave him there on the pavement and forget about him?
What is the difference between this nisayon and the others?
Why doesn’t anyone consider leaving a physically ill child at the hospital but will do everything possible to get him the best care out there even though it most certainly will be on the whole family’s account?
So, how is it that davka the frum ehrliche Yidden are the ones to abandon their kids while the overall population are more accepting?
Myth: “Children with Down syndrome are very hard to raise. They cannot be kept at home.”
Children with DS are very easy-going and lovable. Of course, it takes some effort. I’m not minimizing here; technically there might be more sweat involved in a special needs child’s education than a regular child’s but it’s a fact that these kids are not kept in institutions – they are put in foster homes, often with many other kids there as well, and if a foster mom can do it, why not a biological one?!
“Foster families have it easier as they are not emotionally involved”
Foster families might not be as emotionally involved as the biological parents, but parents that gave up their child are going to be staying very emotionally involved. Giving away your own child is sure to cause you a lot of emotional heart break as opposed to the physical hardships that come along with raising any child. On the other hand, parents raising their own child with special needs, even when it is hard, is also very gratifying and rewarding. I know hundreds of mothers of special needs children. Not one of them is miserable, depressed or wrecked. They all convey a proud sense of accomplishing an important mission!
Raising a special needs child, especially those with DS, is a very rewarding and lovable experience and in no way a depressing or sad story. Of course, seeing one’s child’s disabilities causes heartache but wrapped up as it is in the love these kids generate, it more than compensates for it. That is certainly not the case for parents who gave up their child and stay with the heartbreak only.
Myth: “Society stigmatizes a child with Down syndrome.”
The society that people are so afraid of actually appreciates parents who raise their own child much more than the ones who give them up for foster care.
No one is going to boast about having given up their own child; they are busy hiding it like some somber secret and schlepp around that shadow for the remainder of their lives. Not to mention the sheer stress and worrying about the child in foster care, about maybe having to sit shiva for it or how to answer the simple question of “How many kids do you have?”
And, on the other hand, there are plenty of very proud parents contentedly raising their child with DS.
Myth: “Raising a child with Down syndrome breaks the family.”
I have been looking for a long time for those “broken” families…Are the percentage for kids off-the-derech bigger in families with DS kids? What about all those chusheva families that are raising their children with DS and continue to grow in avodas Hashem? What about all those families that had a second child with DS and chose to raise BOTH?! How many parents had a sibling with DS and still chose to raise their own child with the same syndrome?
Why would Hashem choose to send a child with DS in order to “destroy” the family, chas veshalom?
The exact opposite is true: Raising a child with DS only builds the family! Siblings learn how to be more compassionate and sensitive even if, at times, it is a bit harder for them.
Myth: “Raising a child with special needs comes at the expense of the other children at home.”
Hashem knows this family already has other kids and still He chose to give them one other child with special needs. Truthfully, every consecutive child comes at the expenses of the children born before him. Shall we consider raising only ONE child? We know that children who grow in bigger families get much more out of it than not. If done properly, raising another child, even with special needs, should not cause any loss to the other children at home just as giving one’s regular kids the extra help or tutoring he needs would not be considered as coming “at the expense” of the other kids.
I know that some families might struggle even without a special need child but why should that be a reason for ALL to give up on a child?
Everything needs to be done in moderation and taking every member of the family’s needs into consideration, we can still instill within our family members the pride of being exclusively chosen to have such a special sibling! When my kids discovered there was such a concept as a foster home they couldn’t get over it; “can’t be”, they said, “a mommy would never give away her own child.”
Myth: “Raising a child with special needs is very costly.”
All the governments of developed and industrialized nations help parents and families raise their special needs children. Financial assistance is provided in every aspect of life, making this child ‘cheaper’ to raise than any typical child.
Myth: “Raising a child with special needs might hurt the other kids’ shidduchim.”
This one is ridiculous! For starters, why should one be allowed to give up one child for another one’s shidduch opportunities? If it does affect shidduch possibilities, then giving up the child with DS is only going to emphasize the blemish as in “they have a kid with DS AND gave it up!” Furthermore, Down syndrome is a genetic syndrome known for sure not to be hereditary. Every civilized person knows there is nothing to be afraid of and if someone still is troubled by this fact, one might want to reconsider doing a shidduch with them in the first place…
One more point:
Very often, one or even both parents really want to keep the baby but have to put up with loving grandparents, dedicated family members or even good “friends” and total strangers who only want what’s “good” for the couple and worry about their wellbeing…I do not think anyone has a right to impose their ideas on parents who want to raise their special baby. Parents of a new special needs baby need as much backing and encouragement as they can get and this should be their environment’s role!
Furthermore, special needs children are definitely going to be doing Hashem’s will while no one has any guarantees regarding their “normal” children.
From our own extensive research, most Gedolei HaTorah and Rabbanim will flow along with the parents. If the parents are afraid, anxious or do not have any desire to raise their special needs child they will be given the go-ahead to give it up. In most cases, Rabbanim will not call on their own to order the parents to give up their child. As one Rebbe aptly put it, “When parents come to ask, it’s a sign they are looking for a heter to give it up. No one ever comes asking if they should give away their normal baby…” Some Rabbanim even encourage parents to raise their child, claiming the child naturally belongs at home.
This is why it is so important to empower parents and not discourage them.
From,
A Mother of a DS Child,
In the Name of Many Other Proud Mothers
Who Would Never Dream of Giving Them Up