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compromise

Idit and Avishai Kaminer of Yokneam (Moshava), parents of Gefen, 11, and Almog, 9.
Our daughter Gefen
Gefen, who suffers from communication deficiency, is integrated in a mainstream 6th grade classroom at Pelagim School - with the help of
a teacher's assistant and a special system planned according to her needs. "Gefen is a highly intelligent girl and very talented in art. She
has a very high level of functioning but doesn't always understand the laws that apply to us and the world," say her parents.
"When Gefen was three", they recall, "she aroused the suspicions of the kindergarten teacher and psychologist as to her situation. So she
began receiving treatment, however wasn't diagnosed conclusively until the age of seven. Gefen is a girl who is very aware of herself, her
situation and her uniqueness. She actually delivers lectures to students at Oranim College and other frameworks in which she explains
what it's like to be 'special' from the standpoint of a child. She has abilities that not many of her peers have," say her parents, adding, "nor adults."
After school Gefen can be found in the informal education system of Kibbutz Mizra, together with many of her friends from Yokneam Moshava.
"Our goal," her parents point out, "is to give Gefen the very best
and the most correct response, without compromise. We want to
supply her with all of the tools necessary for enabling her to live a
full and independent life, to the greatest extent possible."
Peer group for parents
Parenting a child with special needs and unusual behaviors is typi-
cally an intensive task, much more demanding than parenting a
normal child. "It's a fulltime job," her parents say, "and your agen-
da has to match the needs of your special child, including numer-
ous treatments. You need to arrange transportation for the treat-
ments, continually search for appropriate solutions and options,
and deal with unusual situations. Here's an example of something
that happened a few days ago: Gefen is officially exempted from
having to wait in line; she isn't able to do that. When in line she
loses her cool, gets wild, and is capable of going off and
disappearing. She carries a special card (that exempts her from
waiting in line) from the National Insurance Institute. Anyhow, we
were in a supermarket with a full shopping cart and saw
extremely long lineups at the checkout. So we went to the ex-
press checkout. Even before out turn came the cashier began
screaming at us, in front of everyone, saying 'You can't stand in
line here', and I'm saying 'Yes we can, wait until we get to you and
I'll show you.' But she wouldn't stop yelling and everyone around us joined in. It's insulting, embarrassing and it hurts. When I got to the
cash register I asked them to call the manager. I showed them Gefen's card, left the shopping cart with all the goods in it, and just left."
Idit brings up this story as one of many examples of the difficulties and challenges of being forced to handle irregular situations. You have
to deal with the stigma, society's attitude, and the need to stand alongside your special needs child and to strengthen and empower him or her.
"Thanks to the Partnership," she tells us, "last year I joined a group of parents with special needs children in the regional council. The group
is accompanied by two social workers. It's a place where we all share our common journey and pain. In our meetings we are genuine with
each other, share our thoughts, remove the masks, feel no guilt, and hide nothing. A lot of complex issues come up. But if I say such things
to a friend of mine who's a mother of 'normal' children, she'd interpret it as weak parenting on my part. She'd think I don't place limits and
that I'm not dealing properly with the situation and so forth. In our parents' group, everyone understands exactly what I'm saying; there's
no criticism."
"Several parents from the group got together and established a community of special needs families," Idit tells us. "With the Partnership's
help we're planning a 'happening' - a fun day to be held near the Lag Ba'Omer holiday. We'll have activities that are appropriate for special
needs children as well as their siblings. This day will enlarge our circle and assist us. Families will be permitted to share, 'get some air', have
an opportunity to get away from the difficulties and just have fun. The event will give people the feeling that they're allowed to get out of
the house once in a while. To live and be part of the world. We don't want this to be a onetime event; we'd like there to be more opportu-
nities to strengthen this special community and make it more significant for its members."
Avishai doesn't participate in the parents' group, but certainly recognizes its importance. "My impression is that it's a place where people
can release a lot of pent-up pressure," he says, "and I think it's worthwhile to have a supportive platform for siblings as well: They have daily
challenges that aren't easy, and they don't always get the appropriate attention. They definitely need support. A family of a special needs
child feels quite alone," Avishai points out, "and it's not easy to receive assistance from the establishment. Sometimes you feel like you're
tilting at windmills. Our desire is to give parents the feeling that they're not alone. That there are others like them. Just as Gefen has her
own peer group, we want to create our own peer group for parents."

Megidon | February 2015 5
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