Dr. MJ Bazos MD,
Child With Special Needs
What about children with special needs?
Every parent wants and expects to
have a "normal" child. Like everything else in life things don’t always
turn out the way we had envisioned. Between 5 and 20% of children will have a
special need, which may range from a physical
disability through a specific medical condition or illness, to developmental
delay or mental disorder.
disability may be visible or invisible. It may be apparent at birth or emerge as
the child grows older. Or it may come later as a result of an injury or illness.
Its cause may be known (e.g. genetic) or as is the case with
many children with developmental problems, its cause may be speculative (e.g.
environmental) or unclear.
Finding out that your child
has a special need can evoke a range of reactions from parents, from shock and
disbelief to grief, guilt, anger, confusion and depression. For some parents
the situation is made more difficult by the
lack of a clear diagnosis or prognosis. Often the child must be subjected to a
series of tests that can go on for sometime and can be quite traumatic for the
parents and the child. Most parents need time and
fom family and friends in order to
adjust to their new situation.
joy and the challenges
child with special needs can enrich your life and bring inestimable joy. It can
also pose challenges, depending on the kind of disability:
- Dealing with day to day physical care and
disability related issues (e.g. eating, sleeping, behaviors)
- Accessing , advocating , & co-ordinating
services, attending appointments
- Juggling care of child with special needs with
other life demands (e.g. work, siblings, extended family)
- Finding inclusive childcare
- Dealing with extended family, friends and
professionals who may be unsupportive or insensitive
- Taking on multiple roles eg therapist, playmate,
teacher, advocate etc.
- Dealing with medical emergencies
- Getting the necessary support in the education
- Dealing with related stress (e.g. financial,
marital, physical fatigue, loss of job etc.)
What parents can do
- Give yourself time to adjust. It may feel like an
emotional roller coaster for a while.
- Accept that other people (e.g. spouse, other
children) need time too and may react differently
- Get as much information as you can about the
disability (E.g. library, conferences, internet, etc.).
- Get in touch with organizations that specialize
in your child’s disability
- Remember you are not alone. Talk to other
parents. Join a support group
- Ask for help from professionals, extended family
and friends Take care of yourself. Take
time off, go out for the evening, spend time with spouse, siblings, and friends,
exercise, eat well.
- Find out what financial assistance is available
(e.g. parent relief.)
- Take time to enjoy your child.
- Prepare questions ahead of time.
- Take notes.
- Don’t accept everything you are told.
Professionals are not always right. Remember you are the expert on your child.
- Learn how to be an advocate. Learn to work with
professionals to solve problems and ensure your child’s needs are met
- Make sure professionals know what others have
asked you to do with the child so that you or the child does not become
overwhelmed with treatment activities.
- Keep track of whom you talked to and when.
- Keep a notebook of possible resources.
- Don’t prejudge what your child can or
can’t do. Children with special needs can overcome incredible obstacles
- Stay positive about your child. Love them for who
they are and the gifts they bring
- Take your child with you as much as possible.
Include them in family and community activities
To Think about:
"As I recall the hours of early
intervention our daughter received, the most valuable lessons were based on
recognizing her worth as an individual, taking into account our abilities, as
her parents, to seek out ways to encourage her
growth and development and, finally, reaching out to other families with
children, with or without disabilities, to participate in mutually supportive
relationships that meet the needs of each individual in the family
as well as the community. " Parent’s
"He’s made our lives
better in a way. It makes you realize what’s important in
life....it’s not how many things you have or where you live...what’s
important is caring for people or being sensitive to others." * Parent
"It gave us more strength and
we’d go and say, ‘way to go Caroline...Look at what you have made of
us. You made us door openers.’ And we’re getting really good at it."
"I don’t believe things
always happen for a reason, but I believe meaning can be found in what ever
happens. Having Amelia has brought incredible joy and enrichment into my life as
well as other people’s lives. At the same
time I have been forced to meet challenges I could never have imagined and to
grow in ways I would never have thought possible." * Parent
"The tragedy is not the child with the
disability, but how we as a society respond." * Parent