WITH THE EARLY YEARS – CHILDREN WITH SPECIAL NEEDS
OF A SOCIAL WORKER
loss of the idealized perfect child can impart a depth of feelings
upon families that is often unknown to others. The shattering
of a dream, of hopes needing to be redefined, a complicated pregnancy
or delivery, genetic mishap or tragic accident which escorts parents
into a netherworld of confusion, denial, self-sacrifice, exhaustion,
notwithstanding feats of courage. How individuals embrace these
feelings can set the tone for the future both on a personal and
ultimately, a societal level. Optimally, one outcome may be acceptance;
of oneself; of others and acceptance of fortune.
within the grieving process, there are transitions individuals,
parents and other caregivers may experience:
All Your Fault – Any extremely stressful situation increases
tension in the marital and familial relationship. This is
common. Many parents tend to affix blame on the partner alluding
to the fact that it is in the genes, social make-up or has
to do with why “the sky is blue.” People sometimes feel better
if the unknown can be explained, and they often struggle to
Be Or Not To Be… - Some parents cope by sacrificing themselves,
siblings, extended family members and/or friends, for the
sake of the member most in need. Perhaps, this cannot always
be avoided by caring parents. However, it seems that often
in these circumstances and emotional expressions that guilt
and a myriad of deep feelings are at play.
Till You Drop – There is always a quick fix, in our society,
is there not? Some parents will resort to doctor shopping.
However, a distinction can be drawn. It seems that to visit
many doctors in seeking a “magic cure,” harboring unrealistic
goals might qualify. Parents seeking wisdom, skill and an
understanding benevolence would seem rather, to be informed
consumers of specialized medical care.
– More transitions unfold. Many efforts on behalf of children
with special needs have yielded a wave of growth for our societies
as we witness inclusion within the community, whether it be
in school, housing, or the warm smile of a stranger as opposed
to that often encountered “blank stare.” If we apply this
to the family, we see an adjustment where each member’s needs
are addressed in the context of equality.
Healing Process – It makes me think of the childhood game,
“Pin the Tail on the Donkey.” When the blindfold is removed,
everything becomes clear. But it is not that easy, as parents
find inner resources to call upon, attempt to gain some control,
establish a more meaningful and supportive relationship with
their child, attempt to deal with the world they have been
thrust into, while maintaining a modicum of their lifestyle.
It helps to relate to others in similar circumstances as isolation,
although common, is often stultifying. It is also important
to practice what I refer to as “advised conscious awareness,”
or to soul search, learn from others, and work through feelings.
That energy may be channeled into other constructive outlets:
The birthing of a true advocate, perhaps.
does one cope with the engendering of anger, sadness, grief, or
pain and yet still abound with love? It is a journey of the mind,
body and spirit. Time does eventually heal. Reaching out to
others, whether it be to friends, family and/or agencies can help.
Support services are available for parents and children to do
just what the term states; offer a bolstering, an anchor, when
needed. A social worker is the appropriate professional to help
negotiate this complicated mire. Whether it be counseling, accessing
entitlement programs, equipment needs, or just a knowing heart,
a social worker can help you pull it all together.
parents work through the strong feelings brought about by an unexpected
stroke of fate, I would like to leave you with a quote from William
Wordsworth… “though nothing can bring back the hour of splendor
in the grass, of glory in the flower, we will grieve not, rather
find strength in what remains behind…” It is your courage and
no one can take it away.
Graziano, CSW is a social worker with the Long Term Home Health
Care Program at St. Mary’s Hospital for Children. You can contact
her at St. Mary’s Hospital for Children, Long Term Home Health
Care Program, 29-01 216th Street, Bayside, New York