Agents of Change: Community Leaders and their Special Needs Children
Toronto, Canada — They are teachers, principals, administrators and community leaders. They are also mothers, often with large families. Sometimes, they are mothers of special needs children. How does a Chabad Shlucha [f. representative] reconcile the altogether consuming demands that come with being a mother of a special needs child, and those of being a community leader?
All through her pregnancy with twin girls, Chaya Perman successfully juggled her roles as director of Chabad of Caracas, Venuezela’s preschool, editor of the community magazine, Torah class teacher and mother of six. Discovering that one twin Gitti was born with spastic quadriplegic cerebral palsy forced Perman to make a series of difficult choices. Devotion to the community she and her husband built over twenty years had to be weighed against the reality that Venuezela, a third-world country, offered few resources for children with special needs.
Across the world, at Oxford University, Chabad representative Feigy Brackman knew something was wrong with her second-born Mendel. Her community, populated by young single students and academics with one or two children, if any, lacked anyone to act as a sounding board or resource for ideas. After Mendel’s pervasive developmental delays – he cannot walk or talk – were diagnosed, the Brackmans struggled to fit in his care while building a vibrant Jewish presence on campus.
When Chanie Dietsch of Chabad of Fairfax, VA, brought her 2-month-old daughter, Cyrel, to the emergency room, she thought she’d be bringing her home that evening. The infant had a heart attack and, now, seven years later, cannot walk, talk or respond meaningfully to her environment. “People asked how G-d could do this to me, and I couldn’t give them pat answers,” said Dietsch.
Experts estimate developmental, mental or physical disabilities affect seven to ten percent of all children. Chabad’s legions of Jewish women leaders generally have large families, stacking the odds that their families will welcome and struggle with the challenge of raising a differently abled child. Doing so while serving their communities presents a set of challenges not well addressed by general parent support groups.
Over the last five years, Chabad representatives who are mothers of children with special needs have shared their stories, suggestions and strategies at workshops at the annual convention of Chabad women leaders. Next month, Chabad’s Shluchim Office, a resource for Chabad’s international network, will launch a password-protected network just for them.
The Special Shluchos network is to be an offshoot of the general Shluchos network, which has over 2000 members and a daily message volume that regularly shoots into the hundreds. Forty shluchos are already signed up for the service, and the number is expected to grow dramatically once word spreads. Though raising a child is a joint parental effort, the Special Shluchos network is for moms only. “We want mothers to be comfortable and open talking to other mothers,” said network manager Chana Piekarksi. There’s a parallel general network for men, and a “Special” subgroup could be developed for them if the need arose.
Among the ironies of Chabad community leaders raising special children is the reality that their own children often cannot attend the schools they’ve created. In some cases, their special child becomes an agent of change. After Gitti’s birth, Chaya Perman’s preschool began accepting children with special needs, and the welcome spread to the other Jewish preschool in Caracas. Gitti’s presence gave parents confidence to bring their children with special needs out in the open to attend community functions. Rosy results are not always achieved. One shlucha, a mainstay of her community’s Shabbat gatherings, stopped attending synagogue because her child’s cooing and spastic movements disrupted services.
When the therapist who helped Gitti, now 17, walk immigrated to Toronto, Perman agonized. Unwilling to compromise on their daughter’s care or abandon their community, the Permans decided that Chaya would move to Toronto with Gitti while her husband, Rabbi Moshe Perman, continued their activities in Venezuela. Trusted community members continued Chaya’s work at the preschool, magazine and adult education classes. As her other children aged out of the Jewish schools available in Venezuela, they moved to Toronto to continue their education. “We try to make their lives as normal as possible.” Several times during the year, Rabbi Brackman leaves Oxford to bring Mendel to Toronto for weeks of therapy, and Feigy steps in to teach his classes and deliver talks at their Shabbat dinners.
The new email group solidifies what had been an informal support network between shluchos in this situation. Perman invited baby Cyrel and Chanie Dietsch’s sister to her home so they’d have access to therapy not available in Virginia. All three women have spent hours on the phone consoling and advising shluchot newly thrust into the universe of special children.
For several years Chanie Dietsch was consumed heart and mind with her daughter’s care, and her role as community leader took a backseat. Her husband, Rabbi Sholom Dietsch, on the other hand, threw himself into Chabad’s growth and brought out new couples to expand their Chabad center’s reach. As the community in Fairfax learned of Cyrel’s prognosis, they began approaching Chanie for advice on weightier issues than before. “After the hardship we’ve been through, I can really empathize with their situations, and they are ready to listen to what I have to share.” With the new network, Chabad’s leading women will have a forum to share that strength and empathy with each other.
me
what about lubavitch mothers of special needs children who are not shuchos?
Ben Shliach
God Bless them all!
Shluchim Rock!
interested mom
wonderful artical on this topic, its great to open everyones awareness for special nead children.
number 9
i leave this comment for “me” there are so many lubavitch mothers of children with special needs. shluchim, non shluchim, whatever. all i know is we are all the same .and we all need to be here for eachother.i live in crown heights, i am a lubavitch mother and i am the mother of a special needs son. and i support all the mothers out there. one day at a time.
number 9
i also wanted to commend the mothers mentioned in the article they do us proud
...
I wonder if this is what the Rebbe has in mind for Shluchim with handicapped children.
The missiras nefesh is unbelievable, but does the Rebbe want 1/2 a family to be raised on one continent and the other 1/2 on a different continent? What are the added pressures to the children for this decision?
To me
they have the friendship circle and probably support groups specially for the ones in NY.
just wondering
why should only the shluchos who have children w/ special needs be able to go onto the blog being created? what about crown heights mothers that have special children?
y.
If i am not mistaken this may also include Anash and not just Shluchim.
We will have to wait and see…..
es
guitti you look awesome! we are so proud of you!
A Proud daughter
An answer to the comment regarding
“I wonder if this is what the Rebbe has in mind … The missiras nefesh is unbelievable, but does the Rebbe want 1/2 a family to be raised on one continent and the other 1/2 on a different continent?
I being one of the children who were raised in a different continent can only applaud to my parent… they taught me not just by words but by dugme of what a chassid really is what a family really is we were never neglected just the opposite showered with love and taught that a family is one unity we are not one whole healthy body unless all parts of the body are tended with the proper care and devotion!!
To just wondering
It’s different for shluchos because they often don’t have the resources that we have here in CH.There is no reason that we can not have our own blog for Crown Heights parents of special needs kids. Perhaps Tzirel can help set it up.
wow-ed by the mesiras nefesh
just to let you know (i know personally) the permans are the most amazing family!!!! they have both houses, plus are totally open to the rest of the family! to:……-it has nothing to do with 1/2 families on different continents-the other children in the family as well have mesiras nefesh and a normal home on either contintent, so much so that i think the Rebbe is looking down at them and smiling from ear to ear!!! especially etti, one of the older daughters-she is so amazing with her siblings! i just think we should look up to these people who have these special neshomos in thier families and are able to care for them!!! and we should try and help them as much as possible!!!!!
Tzirl
Tzirl will be connected to this blog.
Please contact her at the Friendship Circle office in the JCM. We’ll take it from there. Hang in there everyone, we’re all here for each other. Chazak v’ematz!
Defining Shlichus, amongst Crown Heights
Dont feel left out, crown heights! Notice the emphasis is not the support it is the shluchim circle, so so long that we remember that the shluchim and shluchos are our brothers and sisters, literaly, and they dont use their esteemed positions to put others down, they are entitled to a membership of their own, in which the shluchos circle or group is the emphasis, the topic of interest is merely a *sub* theme amongst many other topics the shluchim network provides.
In fact it would be a good idea to set up the same thing for lubavich mothers in general, not particularly or sololy Crown Heights – But Lubavitch as a whole.
The shluchos, however, are entitled to a network of their own, in addition to their extended family of neshei chabad.
For example, in the shluchos network the support and assistance shared on raising children with special needs, would be in the context of shlichus. one mother would get advice from another on how to manage the shluchus duties while tending to the child, setting up the preschool for other special needs children, etc. – all under a perent network whith many other topics of interest regarding shluchus and the day to day life of shluchus.
The lubavich support network, would be devoted esspecially toward the theme itself, as its mission statement. in this the parents both of shluchos and crown heights would provide the nessecary support aplied directly to the cause.
Hatzlacha to he or she who would be working on this project.