Dr. MJ Bazos MD,
With Special Needs
What about children with special needs?
Between 5 and 20% of children have
special needs. The disability may range from a physical disability through a
specific medical condition or illness, to developmental delay or a mental
disorder. The disability may be visible or
invisible (e.g. epilepsy). 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
What’s involved in
parenting a child with special needs?
The demands on parents vary
according to the nature of the disability. Many parents of children with
special needs say the experience has enriched their lives in many ways.
Nonetheless most parents with special needs children face additional challenges
to those faced by parents raising children without special needs. These
- Day to Day Care - Children with
disabilities may require more physical care and for a longer period. Parents
must take on multiple roles of therapist, teacher, playmate, and advocate. They
may also struggle with behavior problems,
greater susceptibility to illness, sleep disorders, and medical emergencies. The
result can be physical and emotional exhaustion for the parent(s). It can also
strain relationships with spouses and other family members. The additional cost
of raising a child with a disability can cause financial strain. The needs of
the child may force one parent to quit their job or seek part-time and/or less
demanding work. Single parents face even greater challenges.
- Services - Parents often have to work hard
to find, access, and sustain services for their children. Most parents spend
many hours both on the phone and taking their child to appointments. With
current cutbacks in services, they may face long waiting lists, or depending on
where they live, having to travel substantial distances. Some needed services
are not available.
- Childcare - Accessible, affordable
childcare is an issue for many families with young children. It is usually an
even larger issue for parents of children with special needs. Although some
childcare centres will do everything they can to accommodate children with
disabilities, others will refuse them. While the issue of childcare disappears
for most children as they get older, it remains a key issue for children with
disabilities over 12 who still need care.
- Education - Parents of children with
disabilities cannot take for granted that their child will be educated at their
local school and many will have to fight for this if this is what they want.
Despite the fact that there is greater acceptance of the idea of inclusion,
there are not always the supports in place, or teacher willingness and ability,
to make it work. Current cuts to special education funding pose a threat to the
education of many children with special needs.
What is "inclusion" and
why is it important?
means removing barriers and providing supports in order to allow children with
disabilities to participate in all aspects of life to the best of their
abilities. This is important because:
- All children need a sense of belonging in their
communities for self-esteem and healthy child development.
- Being with other children helps children with
disabilities to learn social skills.
- Inclusion contributes to children leading active
and independent lives.
- Inclusion helps make other children more aware,
sensitive, and compassionate.
- Inclusion is a basic human right.
What can friends,
extended family, neighbours do?
- Ask the family what you can do to help
- Be sensitive to the additional pressures that
families with special needs children face
- Be accepting of the child, recognizing the
child’s strengths and special gifts
- Include the child whenever possible (e.g.
birthday parties, informal invitations)
What can professionals
- Be sensitive to the feelings of parents, and the
challenges they face. Try not to add to their stress
- Don’t withhold information
- Make sure families have information about other
services, financial support (e.g. respite care)
- You have expertise but only the parents know what
it’s like to live with their child
- Remember that parents have many appointments to
attend, and often must co-ordinate them with work schedules. Be flexible as
possible. Try not to keep parents waiting
- Be aware that parents may be overloaded with
"homework" they have been instructed to do by other professionals. They may be
too exhausted to do any of it.
- Don’t overwhelm parents with the bad news.
Emphasize the strengths of the child.
- Give parents credit for successes. Acknowledge
- Be understanding of employees with children with
- Be flexible.
- Implement work/life policies that benefit all
- Use benefit plans that can be extended according
to need; set up a special fund.
- Encourage employees to volunteer for agencies
that work with disabled children.
What can governments
- Provide adequate levels of funding for services
(e.g. respite care), special education, integrated child care, health care.
- Ensure access to rehabilitative services across
- Provide adequate financial support to single
parents unable to work due to their child’s disability.
- Ensure appropriate legislation is in place to
protect the rights of children with disabilities.
- Consider the impact of policy decisions on
- Avoid policies/procedures/practices that force
parents to fight for every entitlement.
- Listen to parents.
"This experience we did not
choose, which we would have given anything to avoid, has made us different, has
made us better. Through it we have learned the lesson of Sophocles and
Shakespeare, that one grows by suffering. And
that too is Jessy’s gift. I write now what 15 years past I would still not
have thought possible to write; that if today I was given the choice, to accept
the experience, with everything that it entails, or to refuse the bitter
largesse, I would have to stretch out my hands – because out of it has
come, for all of us, an unimagined life. And I will not change the last word of
the story. It is still love." (Park, 1988)