The entire family is responsible for granting children with
special needs the critical experience of growing up in a warm and supportive
environment that accepts them as a full member of the family. However, often
times the family has limited expectations for special needs children and thinks
of them as a permanent burden. This attitude threatens to prevent these
children from ever fully rehabilitating. JDC developed the Shemesh (the Hebrew
word for sun) program in order to provide families with the tools needed to
encourage their children to reach their full potential. Shemesh helps break the
cycle of disappointment and provides families with a new ray of hope for their
special needs children (age birth to six). It spreads the strengths and
experiences gained by other families with similar challenges through
mentorship, training and community programs.
Location: Merkaz Meyda, 1 Dibolt St. Ashkelon
(a shelter building)
Shemesh is a program to empower the parents of children with
special needs. It uses more experienced parents as mentors for new SN families
It takes place in three locations: Rosh Ha’ayin, Baka
El-Gabiyeh and Ashkelon
Emphases:
Abuse and neglect among SN children is two to four times
higher due to communications issues.
Integration in the schools, army, etc is critical, prevent
loneliness
Strengthen the families, who often suffer greatly with an SN
child. An SN child completely changes the family dynamic and balance. The
parents see their child every day; the professionals don’t have that level of
commitment, intuition.
It took 10 years to set up Shemesh. The “kesher” NGO runs
the program. The idea is also to have parents on the steering committee and
professional committee. The parents have experience, knowledge.
MICHAL [amazing] is the Shemesh National Coordinator. Mother
of 4 children, including a set of twins, one – Tomer – with special needs who
was born without a functioning kidney. He fought and survived, at the age of 7
had a transplant but until then didn’t develop properly, lost brain and
physical capacity, diminished speech and vision.
At the age of 12 Tomer developed lymphoma, pains and other
side-effects to the anti-rejection medicine for the kidney. He did dialysis for
two years, it was awful, we didn’t see the horizon. All this time he didn’t
grow or develop. In 2007 he underwent another kidney transplant, this one
caught well, he started to grow. We moved him to special education, he finished
12th grade and wanted to go to the army. Now he’s doing national service in the
police. He lives in a special needs apartment, he lives on his own and I'm
letting him flourish. I was very depressed when he left at first.
I studied social work. I didn’t want to work as a social
worker, I had an MA in organizational management. When the twins were 3.5 I
quit my job as a personnel manager because I wanted a sense of purpose in
social action. Then I did an MA in social work. I set up a special needs center
in Kochav-Yair. I saw an email from the Joint that they were looking for a
coordinator for Shemesh, with one line that grabbed my attention, that
preference would be given to parents of children with special needs. Within two
weeks I was being interviewed and knew I wanted the job. I'm very happy.
The stories are the focus of the program. We want to
transmit a positive message to the parents. It doesn’t matter what religion,
culture, location – the grappling with this reality is shared.
MAZAL from the Ashkelon Municipality Welfare Department. We
built this on the success of the accessible community program, we opened an
information center, course for ten activists with special needs.
16 parents are participating. The group was set up quickly –
we were surprised how much eagerness there was for this: blind, retardation,
deaf.
[Better Together will also build a special needs track
emphasizing youth at risk and their parents:
develop services
community forum
training professionals, workshops
Within these we want to develop a special needs track. In
Rosh Ha’Ain there is a Better Together and Shemesh]
YAEL is the Shemesh coordinator in Ashkelon.
She was the accessible community coordinator for two years; JDC provides the
Hosen program for the community, and in the last two years I’ve seen the work
of the Joint. I'm a single mother and adopted a child from Russia with special needs four
years ago.
The current workshop is amazing.
ETTI (in orange): I didn’t think twice. I immediately said
yes. There's so little knowledge. I had a girl with Downs Syndrome 30 years
ago. I was in complete shock, I didn’t know what to do. They said it was a
mongloid. It was my third baby, I had two healthy daughters and now this storm.
I ran away from the hospital to my normal life. I couldn’t listen, people
thought they could help but I didn’t want to talk to them. I wanted a normal
family. I cried for several weeks, I decided to give her up for adoption. There
was a social worker who said to me, ok, let’s go see her so you can say goodbye
in the hospital. I thought, she’ll be ugly, scary. Ok, fine, let’s say goodbye
and that way I can cut off. I was scared when I went in. The nurse took her
diaper off and I saw that they hadn’t been treating her well, she had a wound
near her diaper. I was angry, my daughter wasn’t being treated right, where’s
my commitment as her mother, I should take her home. Her name is Vered.
The first year wasn’t easy. I didn’t want any contact with
other parents. I thought I was different. But slowly I met other parents, we
set up a support group, we would meet once a week, things changed. Vered became
the focus of the family. We would run from one treatment to the next, the whole
family was recruited to this effort. It harmed the other girls (she had another
daughter after Vered) – we invested so much in her and neglected somewhat the
others. We didn’t really understand how to do this, we made lots of mistakes. I
just wanted what was best.
Vered lived with us
until she was 27 at home. Now she lives in a hostel, she's very happy. She
comes every Shabbat for dinner, all the family gathers together. She has given
so much to this family, taught her sisters so much. Thanks to her we’ve
developed as a family, we’re a caring, emotional, understanding family thanks
to her. The home is open, tolerant, we’re a good family.
ESTHER is the mother of Noa, aged 22 with shituk mochin. Got
a phonecall from Yael four months ago about the program.
Michal: there was a woman on a panel in a Shemesh discussion
with two special needs kids, who said that she prays that if God takes her that
he’ll also take the kids immediately because they won't succeed in living
without her.
Shemesh stages:
Identify and connect to parents of special needs kids, with
a little free time. Empower them in the escorts group. 21 meetings, once a week
for 5 months every Wednesday evening. It trains them to
escort new special needs famil
ies.
The emphasis is that the escorts don’t give advice or solutions, rather to
respect each family and the stage it’s in, to listen and to understand. The
course has a syllabus: active listening, reacting to situations,
judgementalism, identity, siblings, family functioning and much more.
During the course, they’re assigned to the families. Each
has 3 families.
Yael is a hotline for assistance.
Yael is also trained at the same time
The families go through a process. There’s lasting impact
The program is for three years, the course is for a year.
The Welfare Department has 1000 households identified as special needs (out of
40,000 total households in the city).
