“Special needs” ― in the context of school ― refers to particular educational requirements arising from emotional and behavioural difficulties, learning difficulties or a physical disability. Such conditions include autism, Down syndrome and cerebral palsy.
When Keith*, now 10, was a toddler, his playgroup teachers flagged up to his mother that he seemed to be in his own world and was slow to transition from one activity to another. They also suggested that she bring her son to see a paediatrician. After a slew of tests, the doctor dropped the bomb: Keith has autism, the lifelong condition with “no cure”. Later, he was also diagnosed with sensory integration issues and attention deficit hyperactivity disorder (ADHD).
Reeling from the shock of the diagnosis, Keith’s mother was initially at a loss over her son’s fate, especially where to place him in the education system. She eventually signed him up for the Early Intervention Programme for Infants and Children (EIPIC). Still, it was stressful as Keith’s inability to regulate his behaviour often led to meltdowns and tantrums at his preschool whenever his emotions escalated. Coupled with his sensitivity to loud noises and a tendency to scoot off, his mother decided to enrol him in a Primary school for special needs children.
Psychiatrist Dr Lim Boon Leng, Dr BL Lim Centre For Psychological Wellness, explains, “Parents will have to first deal with the emotional upheaval that accompanies the bad news. It is often daunting to have to navigate the healthcare and education systems to get the necessary placement, treatment and care for their child. There can sometimes be long waiting times before parents can access such services and treatments and the wait can increase their anxiety.”
While it may be useful to get a second opinion, the child’s treatment can only start and move forward when the parents accept the condition… Instead, focus on useful cognitions like “I can learn to cope” and actions that can help to make the situation better.
Worried about their 11-year-old son, Harry*, who has autism, Marilyn* and her husband off provide him with every resource to help him cope with his studies. This ranges from private tuition, to occupational and even speech therapy sessions. However, aware that her son was struggling in school and unhappy, Marilyn and her husband mulled over transferring their child to a vocational school.
Parents may grieve over the loss of the “perfect baby” and feel ill-prepared to cope with this “loss” and their child’s disability, says Junaidah Baharawi, a senior social worker at SPD (formerly known as Society for the Physically Disabled).
“There may also be a sense of guilt for the child’s suffering or in the inability to protect the child. Depression and resentment towards others with ‘normal children’ may arise, causing them to avoid interaction with others before the feeling of isolation sinks in,” she adds.
Other than managing the child’s physical demands, parents who raise children with developmental needs also need to understand and manage the child’s emotional needs as well as their own, Junaidah advises. “Parents ought to refrain from overindulging or overprotecting the child, as such behaviour can take away the very experiences that will help the child adapt in life successfully.”
Ease your load in raising a special needs child with these expert tips from Dr Lim and Junaidah.
1. Accept the diagnosis
While it may be useful to get a second opinion, the child’s treatment can only start and move forward when the parents accept the condition. There may be many negative thoughts in your mind, like “I cannot cope” or “the child can never live a normal life”. Even if the thoughts may be real, they are not useful in any way. Instead, focus on useful cognitions like “I can learn to cope” and actions that can help to make the situation better, Dr Lim advises
2. Learn as much as you can about the condition
Learn more by reading the wealth of information that’s available. Other parents also share their experiences and success stories at relevant organisations and support groups. Parents will feel more in control when they armed with facts.
3. Speak to professionals
Seek help early, so that you don’t have to bear the emotional burden alone or worse, allow the situation to escalate to the point that you are burnt out. Talk about the challenges you face to professionals like counsellors and early intervention specialists. They can offeradvice as they’re very familiar with the resources available.
4. Recognise your child as an individual
Other than unconditional love, learn to accept your child for who he or she is, that is, as an individual with different life goals. Recognise the qualities your child possesses (instead of what he or she lacks), Junaidah advises. Be mindful that your child is first and foremost a child, rather than a child with developmental issues. Focus on the present because as a parent, you will face different challenges related to your child at different stages.
5. Have hope and set goals
The relationship between hope and coping is dynamic and reciprocal. Each supports and is supported by the other in turn, especially in managing uncertainties and coping with a changing reality, Junaidah points out. Set realistic and measurable goals that the child can achieve and the family can celebrate these successes together. When small goals are in place, parents can focus on their child’s achievements, however tiny these successes are. For instance, being able to drink two sips of milk instead of one.
Over time, as you and your child absorb more information, you would begin to form more realistic expectations and reasonable outcomes, such as living longer than expected; being well-cared for and supported; having good pain and symptom control; and achieving certain milestones. This would shift the focus from hoping for unrealistic outcomes, such as a cure.
The relationship between hope and coping is dynamic and reciprocal. Each supports and is supported by the other in turn, especially in managing uncertainties... Set realistic and measurable goals that the child can achieve and the family can celebrate these successes together.
6. Take turns to get a break
Take turns with your spouse to do solo shifts, so that you’ll get some respite. Go out into the sun, even if it is for a few minutes. Find time to do things you love. The more balanced, relaxed and recharged you are, the more patient, caring and proactive you can be when you perform your caregiving responsibilities.
7. Involve other family members
Understand that you are not alone in raising your child — both parents should form a strong partnership and even involve the other children. This as a ship the whole family is sailing on together, so you’ll need to rely on one another, Dr Lim notes. By engaging the siblings to help the child with special needs, they will nurture traits like compassion and patience.
8. Take care of yourself
One of your top priorities is to take good care of yourself. Continue with your hobbies, exercise and rest adequately. Get a breather from taking care of your child ― as it’s a long journey.you will need stamina and rest to help the child best.
9. Join a support group
10. Hold your head high
Should you encounter insensitive remarks about your child from strangers, instead of feeling discriminated against and angry, hold your head high and learn to be proud of what you are doing to raise a child with special needs, Dr Lim suggests.
*Not their real name.
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