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Q: What role does support play in a special needs family?
A: Support is the very foundation that holds a family together.
Parents of children with disabilities need different levels of support at
different times in their child’s life. Some may need more in the early years
only, while others may need it consistently. Parenting a child with special
needs can feel very isolating, so reaching out for support is both healthy
and necessary. Having both a personal and professional circle of support is
critical to a family’s well being.
Q: How can parents of children with special needs build a support
network? Who needs to be in the system?
A: Building a solid support network takes work and creativity.
Calling Parent to Parent (770-451-5484) is a good place to start. Parent to
Parent was founded on the idea that one of the most meaningful sources of
support is another parent who has “been there” – someone who can listen and
really understand the other parent’s fears and concerns. We provide
one-to-one emotional support and information to parents and family members
who live with disability. This support is not only to parents of newly
diagnosed children, but throughout the life span of their child, when
parents need peer support as they confront the issues of transition,
inclusion, supported work and supported living.
Also, networking with other parents at support group meetings, schools,
churches and conferences is a great way to add to a family’s circle of
support. Family members, friends, teachers, therapists, doctors and the
child’s friends are other possibilities. I know of one family who even
created their own “support group” and has regular meetings with everyone on
their team.
Q: Speaking as a parent, what are the rewards of raising a child with
disabilities?
A: One reward is how this experience has caused me to examine the
priorities in my life. Issues that were once important are not any longer,
while others move to the top of the list. Having an immaculate house was
replaced with more one-on-one time with my boys.
Also, raising children with special needs gave me a greater sense of
gratitude for the small, everyday events that others may take for granted,
such as my son getting invited to a birthday party, or hearing “I love you,
Mom” for the first time. These little milestones were a cause for
celebration in our family.
Q: Having a child with one or more disabilities can strain a family’s
resolve, adding stress to the parents’ relationships with the siblings and
in their marriage. What advice can you offer parents to strengthen their
families and avoid some of the relationship pitfalls that come with the
territory?
A: Finding the right sense of balance is crucial to keeping families
together. Parents need regular time alone as a couple in order to keep their
marriage intact. This is time apart from the children doing something
enjoyable, not discussing problems! This is where having a trusted friend or
babysitter is important to a family. The typical sibling also needs special
time with one or both parents in order to understand his role in the family
is more than a “helper” to his sibling with a disability. This attention can
go a long way in helping a child cope with the unique stressors within the
family. Also, each parent needs to find his or her own personal time alone.
This could mean pursuing a hobby or a personal or professional goal. A
healthy activity that you enjoy will give you the emotional reserves to be
able to deal with the hardships and keep everything in better perspective.
Q: What advice do you have for parents who are helping their special
needs child transition to adulthood?
A: If possible, do the research on options early. Even with a younger
child, parents can begin to develop a vision for how their child’s life
could look in the future. Where could he be living – in a group home, the
family home or on his own? What are the child’s strengths and how can these
be translated into employment? For example, a young adult who loves being
outdoors might be able to work for a parks and recreation department. Also,
find out what adult services, such as job coaching or supported living are
available in your area. Call or visit these agencies so that when a
transition plan is written, all of the child’s options will have been
investigated. Invest the time and be the most active member of your child’s
transition team.
Rita has two sons with autism. Reprinted with permission from
Atlanta Parent Magazine.
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There is an
energy in us which makes things happen when the paths of other persons touch
ours.
from the Monks of Weston Priory
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