Monday, August 9, 2010

ONE VOICE: August 2010

Supporting the social needs of special children

YOUR VOICE
By PANG HIN YUE


AT a recent support group meeting, parents were asked about their dreams for their autistic children whose ages ranged from four to 24. They all expressed hope that their children would receive proper education and be employed. The ultimate goal is for their children to live independently when they are no longer around to fend for them.

But getting an education and a job are not top priority for adults with learning disabilities, says Clarrisa Chang of Malaysian Care who has been working with teenagers and adults with learning disabilities (LD) for the past 20 years. They include people diagnosed with autism, slow learning, Down syndrome, attention deficit hyperactive disorder and dyslexia.

In fact, based on her surveys, persons with LD have the same yearnings like any typical teen or young adult. “They desire to have a relationship with the opposite sex, settle down, raise a family and have a car,” she notes.

This was amply demonstrated last weekend by a group of young adults with LD at Dignity and Services’ fund-raising event. They told the audience that they, too, wanted the ordinary things of life like living on their own, getting married and having a car licence.

But oftentimes, says Chang, parents get so caught up with the need to intervene academically because they think it is the ticket to securing a job and gaining independence.

“We don’t want our (special needs) son to be a liability to his siblings when we are gone,” says a parent who declined to be named at the Parents Resource for Autism meeting.

Very few parents dare to entertain the thought of their LD children getting involved in a relationship. Marriage and starting a family are not part of the equation to see their LD children through adulthood.

“Many parents overlook their children’s social and emotional needs which are critical to their well-being,” Chang asserts.

Basic human desires need to be addressed; we can’t just sweep the issue under the carpet.

At the very least, these young adults should be given the opportunity to participate in social activities that give them a sense of belonging and a chance to foster friendships. This is where social clubs and supported living for the LD community come in, explains Chang.

Although parents have reservations out of fear that their children who have learning disabilities may not fully understand the responsibilities that come with marriage and raising a family, the issues must be dealt with. But it is a Catch-22 situation in Malaysia as the system is bereft of provisions for people with special needs who want to get married.

In Britain, people with LD are free to enter into marriage at age 18 or above without their parents’ consent.

The UK Social Welfare Ministry is charged with providing support and services to ensure people with LD are taught sex education and are advised accordingly, should they decide to enter into a relationship and have children.

But in Malaysia, the issue of sex and marriage among the LD is hardly within the radar of the Government. It has not reached the level where parents are confident that the choices their LD children make will guarantee them the necessary support should they decide to pursue marriage.

“The education system here for special needs children is far from ideal. What more when it comes to job opportunities and marriage,” says M.L. Chan, who has a 15-year-old autistic son.

Chan spent 15 years teaching in a regular school before making a switch to teaching LD students under the Government’s special education programme five years ago. She had hoped to change the system to make it work for the LD students by incorporating the various interventional therapies she had learnt privately. She wanted the school to benefit from them but was met with strong opposition from other special education teachers. She is on the brink of quitting.

“It is an uphill battle (trying to improve the education system). I am planning to home-school my son,” says Chan.

And she is not alone. In an education system that has yet to fully grasp the need to provide interventional therapies, families with the financial means have opted out and are seeking help privately.

Even as the meeting drew to a close, parents were still mulling over the options for their LD children with the exception of one mother who expressed hope that her son would marry some day.

One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to onevoice4ld@gmail.com. For enquiries of services and support groups, please call Malaysian Care (
03-9058 2102) or Dignity & Services ( 03-7725 5569). E-mail: onevoice4ld@gmail.com.

Link: http://parenthots.com/features/Supporting-the-social-needs-of-special-children.aspx

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