Putri Juneita Johari
WHEN you become parents to a child with special needs, one who's physically or mentally challenged or both, you have to deal with a few extra things. The first is acceptance. You need to face up to your disappointment and devastation that your child is different.
Some are born with physical impairments and you'll know immediately that this baby needs all the help, support and love he/she can get. Yet, there are also babies who look no different from any other. They seem perfectly fine until they get older. The revelation will still shock you to the core.
This is the time you need to make plans, both for the short term and immediate needs, as well as the long-term requirements. To do this, you need to go through the various layers of acceptance — first, your own feelings of the situation, next is how your significant other feels about it, and then, it's all about how you integrate your child into his larger environment.
There used to be a time when society frowned upon parents who brought their special children out in public. Such things were hushed up and spoken only in whispers as though they were taboo.
It's not surprising then that there are parents who were in denial of their situation. Despite knowing deep down that their child needed extra help, they'd still make him/her go through the normal rigours of school.
The child may not thrive in that environment and may develop an aversion to school, but will still be pushed into it. These parents hope that the child will "grow out of it", whatever "it" may be.
INNER DEMONS
Since the birth of my own special child more than 30 years ago, as well as having been working with children with special needs along with their parents, I find there are still people who shy away from seeking help until it's a bit late.
These parents appear to be quite open about their child's condition and situation, so you think they'll also be forward-looking. What we don't know is how they feel about "exposing" their child to the "vicious" world out there, and perhaps the fear of being judged.
There may be many other fear factors that we don't know about, and they're not willing to discuss. Feelings that make people feel exposed and vulnerable are things that can hinder progress for the child. In such cases, while the parents are wrestling with their inner demons and coming to terms with it, time passes by.
In that time, the child grows. And as he/she grows, the physical development part may be delayed. Hormones kick in during the early teen years, and with this comes emotional and behavioural development that the child and his/her parents have to deal with. The other dimension that's now being addressed is mental health — both for the child and the parents too.
EARLY INTERVENTION
While all this is taking place, parents become older. Not only will it be harder to reconcile with the situation, they tire more easily too. They may even have their own health issues to deal with.
Then there's the matter of finance to meet the extra things the child may need, like therapies, wheelchairs, prosthetics and aids, and even schools that are designed for people with special needs and learning abilities.
For anyone working in the field, early intervention is something that's spoken about and suggested to all parents in this situation. Why do we stress on this? It's for the very basic reason that it's always easier to mend, mould and even cure most things in the early stages.
Early intervention means that problems can be identified early so that children with special needs who are at risk of poor outcomes get the best support they can. By tackling the problems head on, you can fix most things — be they bones, eyes, speech and movement etc.
At that early stage in their lives, their brains are geared to learning and surviving. There are many specific and general programmes, which are both educational and therapeutic. They can support the overall growth and development of the child to cover as much of the milestones as possible so they can realise their full potential.
Once they cover the basics of self-help, life skills, classroom routines, play skills, social behaviour and some academic abilities, they'll be more ready to join the society around them.
They need routines and activities to keep them busy and to have some purpose and something to look forward to everyday. It's also beneficial for them to have a circle of friends and other people outside of the immediate family they can relate to. They can only achieve this with supportive parents getting the right help.
This is the gift of life, not just for them, but for the parents and immediate family too.
(The views expressed in this article are the writer's own.)
Putri Juneita Johari volunteers for the Special Community Society of Ampang. She can be reached at [email protected].
