Welcome to the third issue of the “new look” Educator. The last issue
was a special pre-conference edition and I am delighted to tell you that the
ICEVI 50th Anniversary World Conference was, especially
for us parents, a great success - with many presentations and workshops by
parents. We also put some resolutions up and they have been voted through
unanimously. The resolutions are included in this edition and I would like to
draw your particular attention to Resolution 15 - Early Childhood Intervention
and Parent Partnership and to Resolution 18 - ICEVI Organisation.
The theme for this issue is “Early Childhood Intervention” (ECI). The
importance of ECI is that the earlier a child’s needs are addressed the better.
Improved communications and understanding between parents and professionals
mean that the needs of the child will be identified more readily. Here are some
contributions on the subject from a number of different ICEVI regions. A big
thank you to Marilda (
-
Hon. Chairman T.E.A.M. Europe - Email: tulaabaxter@hotmail.com
25,
Marilda Moares Garcia Bruno (Sao Paolo -
When families eagerly await the arrival of the baby they so much want,
they make plans, dream and idealize a particular child. When the child is born different from how it
was imagined, when it has a visual impairment or even multiple disabilities, we
parents feel frustrated and lost. We
become disorganized and need support and help.
We embark on pilgrimages to doctors and specialists in the hope of a
cure, a miracle. When we are referred to
an early intervention program we experience many doubts, anxiety and fears
which are often not expressed explicitly.
In general, only the limitations and difficulties of our children are
evaluated, which further increases our anguish since the focus is put on the
disability and not on what the child can do.
The potentials are rarely shown: how we can communicate, interact, play,
build ties, cope with our difficulties and succeed in being happy together.
Early intervention programs are organized from the perspective of
professionals and organizations, emphasizing stimulation techniques and
developing skills, often to the detriment of relationships and interactions, of
the creation of the self, of an identity, of the different forms of
communication and of the inclusion of the child in its own family and
community.
As
we march on this path, we need to feel that we are welcome and that our
anxiety, desires and
expectations are being heard. We need
support and help so that we can feel competent and capable of participating in
the development and learning process of our children and of deciding their
future with them. We need to meet other
parents with whom we can identify and work together for the rights of all
children, thereby participating in the construction of an inclusive society.
EARLY INTERVENTION, THE
Guila Seidel, President - “Ofek Liyladenu” (
Visually Impaired Children)
We
see Early Intervention as a wide range of activities in many fields: we provide
the parents with information about medical and legal matters, rights and
services. We also offer support by
linking parents with other parents whose visually impaired child has the same
problem and /or is the same age, or lives close by.
We
also initiate support groups and meetings at which the parents are introduced
to other parents, either at our annual conference - or at special events, such
as summer recreation for families. Such an event occurred two weeks ago and
illustrates the energy a family can gain from the healing power of the parents’
group.
The
parents of 4 year old Karen, who recently lost her remaining vision after
medical intervention, were exhausted after spending almost 4 months with her
abroad. Needless to say, their family life was disrupted (the two elder
children remained in
After
5 days Karen’s parents headed home with better ideas, encouraged and
optimistic. We, the “senior” parents in the association, realised with pride
that we had achieved an important goal.
EARLY INTERVENTION – A PARENT’S PERSPECTIVE
Wendy Sainsbury -
parent of a VI child and National Family Support Officer of LOOK UK
Ideally
all parents with visually impaired children should be able to access equal
levels and timely support in regard to early intervention. Sadly this is not
always the case and the experience of parents differs widely.
There
are many reasons for this:-
1) Poor
co-ordination of intervention (at the point of diagnosis) between hospitals,
statutory and voluntary services, leading to parents eventually venting anger,
bitterness and frustration, particularly when accessing the education system.
2) Lack of
parental information as regards Special Education Needs.
3) Parents’
inability (due to emotions/not coping with the situation) to ascertain their
rights.
4) Local
Education Authority (“LEA”) lack of resources.
5) Differing
criteria for engagement with families and children as applied in some LEA’s.
6) Inclination
of teachers to support the LEA rather than the parent and child during the
early stages or when issues of conflict arise.
7) Lack of
expertise and experience in dealing with a child with multiple disabilities and
a visual impairment.
In some
cases, after intervention successfully takes place and the young person enters
the system, there can be an easy seamless transition. Often, however, where
there is no support from an independent organisation (such as LOOK, the
National Federation for Families with Visually Impaired Children) or other
empathetic professionals, intervention can be fraught with problems.