Support
for the Family
By Esther Ilana Rabi
A SUPPORT NETWORK IS A LIFELINE FOR PARENTS AND SIBLINGS OF CHILDREN WITH DISABILITIES
It was like having a black sack pulled down over my head , hearing that my child has a serious disability ,” said Leah M . “ I couldn ’ t hear , see , or think normally , and I still had to work through denial , anger , grief , fear for the baby ’ s future , fear that our family wouldn ’ t be able to handle the strain , and feelings of guilt , confusion , and disappointment . Seeach Sod came to my rescue when I was most desperately in need of help .”
“ Lives are upended when a child is born with special needs ,” says Zippi Sternfeld , team leader of Seeach Sod ’ s social workers . “ Everything is in turmoil — the marriage , the finances , the parents ’ relationship to their other children , the daily routine . The parents
are reeling , emotionally . Mothers lose interest in meeting friends ; their overriding interest becomes dealing with their child . They have to make big decisions , deal with a complex bureaucracy and arrange therapies , without having had a chance to digest what they ’ re facing . We ’ re there for them , so they don ’ t have to go through all that all by themselves .”
Other parents in the same boat can be the greatest help at such a time . That ’ s why Seeach Sod runs support groups for parents . Leah said to me , “ Twenty-two hours after my child ’ s diagnosis , the mother of a child in a wheelchair said to me , ‘ You may not realize it today , but there will come a time in your life when you ’ ll find that having a daughter with a disability is a brachah .’ I thought , No way ! but those words were a gift that lit the first light of hope for me . She assured me that there would be programs , and progress , and help .”
In It Together
Zippi says that the most valuable support groups are for the parents of the youngest children . “ It ’ s the first place they can accept hugs and encouragement . The togetherness that the mothers feel is invaluable , because the fathers often escape the new problem by spending more time at work , which can be hurtful to their wives . We talk about how to get the fathers more involved , and how to help the other kids . Sometimes parents are so involved with the child with the disability that they don ’ t think about how it affects the other children in the family , and how hard it is for them .”
A lot of times , Zippi says , she just has to get the group going with a sentence or two and then the mothers take over , because they have so much to share . Other times , the professionally trained group leader is more active .
“ Denial , for example , is a serious problem ,” Zippi says . “ I remember a boy with complex disabilities and limited communication skills . His mother refused to accept his reality . She was so detached from his needs that she put him into a normal cheder when he was three . We knew he needed help , and that we could offer it , but we never force ourselves on a family .” After months of coming to support group meetings , it was another mother ’ s offhand remark that convinced this boy ’ s mother to give her son the opportunities that Seeach Sod offers .
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