Theresa Schneider awaited the birth of her twin
granddaughters, like any grandmother would, with a mix of both
excitement and worry. When one of the girls, Emily, was born and
diagnosed with cerebral palsy, it was, she says, "overwhelming at
the very beginning."
Fast forward six years, and Theresa is a model of what a
tremendous resource grandparents can be for their adult children
raising a child with special needs. "It amazes me to see all of the
support and opportunities that are out there for children with
special needs," she says. But those early days of diagnosis can be
extremely hard, not only for the new parents of a child with a
disability, but also for the entire extended family.
Barbara Brennan, grandmother to Sam, who has
neuro-developmental delays, remembers those early days and the
realization that there would be "broken dreams and dreams that
could not be realized" for her grandson, as well as for her
The resounding refrain among special grandparents is their
concern for their adult children. "I worry about the marriage,
about money, about their home, about their future," says Elaine
Fisher, grandmother to 10-year-old Adam, who has autism.
Caring for a child with special needs 24 hours a day
without support is daunting, and grandparents see the stress it
puts on their adult offspring. It is difficult to watch your
children struggle as they go through a tough time emotionally or
physically, these grandparents say. But grandparents suffer this
two-fold while observing both their adult children and their
Grandparents often struggle to find their place with their
adult children-where they fit in and how they can help. This is
especially true of special grandparents. "I didn't know where to
help," says Fisher. "Financially, relief, respite?"
Judy Graf, whose granddaughter Sophia has cerebral palsy,
found the best thing for her son and daughter-in-law was to be
their support system. "We followed their lead and just made
ourselves available," she says. Schneider, who struggled to figure
out where she should step in, found the best way was to not be
afraid to simply ask what specific thing she could do and
Offering new parents advice is something most grandparents
are guilty of; special grandparents are no exception. "Early on, we
bumped heads," Fisher says. "I was trying to give advice, articles
I had read, information on treatments people had told me about."
But she quickly learned this was not the best approach.
Graf says her best advice to other grandparents is to
stand behind the parents' decisions and direction. "I try to be
supportive of their ideas (for their child)," she says. "You
will not be there to see those ideas through on a day-to-day basis.
You are not walking in their shoes."
Both Graf and Schneider say it is helpful to be part of their
granddaughter's everyday realities, to attend therapy and medical
appointments. Therapists generally welcome the presence of extended
family. "Grandparent involvement is a huge support to the child and
parent involved. I work with children who can only make it to their
appointments because of their grandparents," says Bridget
Kleiderer, physical therapist from Capable Kids in Northbrook. With
two parents working, or smaller siblings at home, it is often
difficult to coordinate a heavy therapy schedule for a child, and
grandparent help is crucial.
Some grandparents find it helpful to have a network of friends
who understand what they are going through. Fisher found a support
group of other grandparents when her grandson was diagnosed with
autism. They were able to understand the day-to-day struggles, and
also the joy she felt, better than anyone else. Graf did not have a
network of friends or people who understood but instead found her
strength by working as a volunteer at the Ronald McDonald house.
She now works with new parents and is able to give them hope and
support by relating her own experiences.
The role of a grandparent of a child with special needs is
a different path than they thought they would take. But
grandparents love their grandchildren, and these grandparents are
Fisher talks about Adam, who has autism, and knows that
all of the time she has spent in his life has been worth it. "I
know there is such a love when I see him. Connection," she
Along with love of their grandchildren, these grandparents
marvel at how amazingly strong and competent their adult children
have become in facing their struggles.
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