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Children with special needs – children like the man born blind
in this story; children suffering from Cooley’s Anemia; Down’s
Syndrome children; children with Cerebral Palsy or other central nervous
system deficiencies; children with Muscular Dystrophy; children who are
ravaged by any one of virtually hundreds of birth defects and diseases:
children with special needs are a challenge for us to take part
in the “works of God” that are displayed in each one.
We must learn the
discipline of silence until a compassionate Christian response is possible
in our part.
There is perhaps no event more devastating to a family than a child
born with a birth defect. There
is no more severe test of a family’s resiliency than the discovery that
a child is slowly dying of an incurable disease. Each child and every family is unique, bringing his own life story
into the tragedy which each must confront. What is offered here are some broad outlines, a few insights taken
from experience and an expression of concern for these children and their
families.
The initial response of parents and the broader community to a
child with birth defects is guilt and embarrassment. Unthinkingly, we ask the question which the disciples asked of
Jesus: who sinned – this
man or his parents? We
immediately seek to place the blame somewhere. We feel that this is too terrible a tragedy for someone not to be
responsible. But to this question and to all questions like it, must be
given Jesus’ answer – no one sinned, neither the child nor its
parents. No one is
“responsible.” No mortal
can or should take the blame for a child suffering from one of many
possible defects.
Most of us have, at one time or another, been exposed to someone
who suffers from some physical or mental handicap: someone confined to a wheelchair, a child who is mentally retarded,
or a person who is deaf or mute. Our
initial reaction to this situation is usually a mixture of embarrassment,
pity and anxiety – feelings which clash with one another and bind us up,
feelings which are nearly always expressed in an inability to reach out to
that person and his family. Instead,
we indulge in stereotyped remarks and even make unkind, patronizing
comments. The fact that these
comments arise out of anxieties generated in ourselves is no consolation
to their vulnerable recipient. One
of the most difficult things for anyone is to deal with conflicting
feelings in oneself. We must learn the discipline of silence until a
compassionate, Christian response is possible on our part.
The ways in which parents of children with special needs deal with
the tremendous stresses placed upon them vary, depending upon their
maturity, the depth of their commitment to their marriage, the presence of
other children in the family and their needs, their financial situation
and finally, and perhaps more importantly from the perspective of the
Church, the social support which can be called upon from the extended
family and the community at large.
Children with special needs place a permanent stamp on their
families. The emotional and
physical demands which are inevitable in raising such children often lead
to fatigue and a sense of inadequacy as a parent. A crisis of parenthood occurs.
This crisis can be dealt with in two ways – either positively or
negatively – depending upon the parents themselves and the quality of
support they receive from family, friends and the Church:
1.
Families who have successfully dealt with these problems often
express their belief in the value of the experience in setting the
family’s priorities in order.
The superficial social life which so many of us indulge in out of
habit and the
materialistic values endemic to our culture are quickly put in
their proper perspective. There
is not doubt that a discerning parish priest and the Church community can
play a large role in aiding the development of this essentially Christian
awareness. The family that
weathers these storms can, in fact, be stronger than before.
2.
The opposite is also possible: the trauma of day-to-day care of a child with special needs can
accentuate previously present family problems. The parents’ rejection and/or resentment of the child can become
over-whelming, literally tearing the family apart. Parents can become bitter and blame one another for not shouldering
enough of the burden. One
parent can focus all of his attention on the child, forgetting the needs
of the spouse and other children. The
additional financial burden, if it is not allayed by community resources,
can be a disruptive factor. The
entire family structure may collapse, leading to divorce, abandonment of
the child with special needs and severe emotional damage to the other
children.
People even brought
little children to him, for him to touch them; but when the disciples saw
this, they turned them away. But
Jesus called the children to him and said, “Let the little children come
to me and do not stop them; for it is to such as these that the kingdom of
God belongs.”
~
Luke 18:15-16
The positive role that the Church can play was made clear to me
years ago.
While applying for a job at a state mental hospital in
New England, I was interviewed by a young social worker of Greek Orthodox
background who suffered from a central nervous system motor disability.
Moving around the room in a motorized wheelchair, her speech
slurred but understandable, she spoke movingly of her childhood in a Greek
Orthodox community. One of
the things which I retained from our conversation was the fact that
despite her obvious difficulty, the people in her parish never treated her
as someone “different;” there were never any implications that she was
“inferior” or “didn’t belong” with the rest of the children in
the parish. Instead, she told
me both she and her family were provided for through a support system of
caring and compassionate people. She
is living proof that we, as a community, in the name of Christ Jesus, can
make a difference. |
