Christmas is a time to reflect on families who may be having a difficult time. Dr
Nicola Davies talked to two parents of children with special needs about how they
One of the most devastating experiences is to be told your child has a mental or
physical disability. Coming to terms with a child’s special needs diagnosis is akin
to going through a grieving process.
Parents may experience a gamut of emotions, including shock, anger, disappointment,
and guilt. You may also find yourself re-evaluating your hopes, dreams and expectations
for the future.
As the parent of a special needs child, you will face challenges in
navigating your child’s care from diagnosis and intervention, to long-term planning.
But your child will also bring love and joy to family life.
Embracing the challenges
Raising a child with special needs can be a huge challenge.
Here are some tips to help you through:
• KNOW THAT YOU ARE NOT ALONE
There are other parents going through similar challenges. Search for parent networks
and support groups online and in real life.
• PAMPER YOURSELF
You are in a position where you have to care for your child constantly. You also
need some caring and pampering. Go for a spa. You deserve it!
• FORGIVE YOURSELF
Even when you try really hard, sometimes things will go wrong. That’s okay. Don’t
beat yourself up about it.
• DON’T LOSE YOURSELF
Have an identity apart from being a parent. Do things you enjoy such as writing,
reading for pleasure, or shopping.
• DON’T LET OTHER PARENTS GET YOU DOWN
Remember that parents who don’t have a child with special needs might not always
understand. Explain, teach, and raise awareness among those who do not know.
• SPEND QUALITY TIME WITH ALL OF YOUR CHILDREN
Take the time to play with them and enjoy the moments. Read with them, go for a picnic,
or snuggle up on the settee.
• CELEBRATE THE LITTLE THINGS
A minor development your child has made is huge! Share it with those you love. Be
proud and brag about it.
• SPEND TIME WITH YOUR PARTNER
Raising a special needs child is hard work and time-consuming, but you need to make
time for your relationship too.
• TAKE CARE OF YOURSELF
Eat well, exercise and meditate. If you are healthy, you will be better able to take
care of your child’s needs.
• COMMUNICATE WITH YOUR PARTNER
Understand and define your parental roles with respect to your spouse. Explain how
you feel and in turn, try to understand their perspective.
• RELY ON OTHER HELPFUL SOURCES
Confide in a friend. Call, write or talk to someone you trust. If required, try professional
counselling. There is no shame in needing support.
• TAKE ONE DAY AT A TIME
Stop focusing on the ‘what if’s.’ Take one step at a time to get through each day.
• THINK POSITIVELY
Try to focus on the positive side of every situation.
‘The future for Austin is unknown’
Johanna White is the mother of Austin, who was diagnosed with autism when he was
two-and-a-half years old.
‘When I was told Austin had autism, I was numb. In the days that followed, I remember
crying. I realised that the blueprint I subconsciously had in my head for my son’s
future – school, university, marriage, kids – had been ripped apart. It took me a
couple of days to digest the information, then I started researching everything I
could find on Autism Spectrum Disorder.
Austin’s needs have varied over the years: he was not able to speak until he was
four or five years old and he suffers from obsessive behaviours. He is also incontinent.
The way we have coped is through PECS (Picture Exchange Communication System), which
really helped Austin to begin learning to speak. It was useful to show him where
and what we will be doing, and for him to request things and communicate.
The other way that I coped is through trying to understand his world so that I could
preempt any potential difficulties.
There have been many times over the years where it’s been impossible for us as a
family to do “normal” things. Going to a restaurant or the cinema would be so tricky.
Austin would not be
able to sit still – he would become obsessed with the doors or the
toilets. I would be embarrassed and people would stare and laugh at us. The way I’ve
managed is to just let Austin be himself and not care what people think! We don’t
let autism stop us from doing anything anymore.
Family celebrations and events like Christmas are always a challenge. It is always
a concern when there are places and people that we don’t know. Putting Austin into
unfamiliar situations is always risky. If things get too much, we just remove ourselves.
The future for Austin is unknown in as much as I can’t guarantee what he will do,
or where he will go. I ensure I never put limitations on him because of his additional
needs. I’m his advocate and I’ll support him whenever I can. I hope he will be able
to live semi independently and have meaningful relationships and a career as well,
but I’ll settle for him being happy, without the societal pressure of what happiness
‘Kyle will always need someone to take care of him’
Lydia Hamilton is the mother of Kyle, who has been diagnosed with Cerebral Palsy
‘Kyle was born following a long, difficult birth, resulting in CP. His difficulties
with being a quadriplegic CP sufferer were not diagnosed until much later when he
didn’t meet developmental
We went through a grieving process for what Kyle might have been, hoping he would
make progress and everything would work out fine. I wanted to talk about it, while
his father withdrew into himself.
At first, his epilepsy was more of a concern than his physical
difficulties, but now that his epilepsy is in remission, physical
difficulties are what make it harder to care for him.
In recent years, several websites have begun offering
information, support, resources, as well as friends with a child who
has a disability. It’s important to build up a strong support system when your child
is young. Finding out about your child’s right to education and services, and fighting
to get entitlements and
funding, is also crucial.
Our family Christmas was traditionally held at his great grandparents’ house. But
owing to the three steps to access the home, it became difficult. Extended family
don’t always consider his needs.
Kyle will always need someone to take care of him. The worry remains that the time
will come when his family won’t be there to care for him any longer.’