By Edeline Anne Goh
Raising a special needs child is not an easy task. Parents experience numerous challenges, which are made even more complicated when they are unable to get the right professional help for their child. From the point of early diagnosis right through to health care, education and development, taking care of a special needs child requires a spectrum of professionals who can truly understand these children and work with them effectively.
When parents suspect something may be wrong with their child, many questions flow through their minds including “What do I do?”, “Who should I turn to?” or “Should I wait and see?”
Dr. Rajini Sarvananthan, a Consultant Developmental Paediatrician from Baby & Beyond Child Specialist Clinic advises that, “Whenever parents have a concern about the development or behavior of their child, seek help from a professional to diagnose and clarify if the child has special needs.” She explains that many parents intuitively feel that something is wrong but only end up consulting a medical expert later on. This can impede the child’s development.
“Ideally, a paediatrician should be the first person parents meet. It can be a general paediatrician or one with a specialisation such as a developmental paediatrician or a neurological paediatrician,” shares Dr. Rajini. “There are also times when other medical experts such as clinical psychologists, speech therapists, occupational therapists and physiotherapists are able to diagnose your child’s condition.”
After the initial consultation, a detailed diagnosis and evaluation is needed because each child is different and requires treatments that are geared toward his or her specific condition. The evaluation will help the paediatrician to refer the child to the right specialist or medical expert. This evaluation can be done more than once and also works as a way to track the child’s progress.
For example, the evaluation often sets developmental goals, which will be discussed by the parents and medical experts. These goals can shine a light on the efficacy of each medical intervention and help doctors and therapists decide if more help is needed.
Why Should My Child Get Help?
“Your child needs an intervention to maximise potential, minimise disability and to help him or her function normally by being as independent as possible,” explains Dr. Rajini.
Hence, to explore your child’s maximum potential and to develop his or her skills and abilities, interventions should start as early as possible — ideally between the ages of 0 to 5. Dr. Rajini says that, “This is a time of brain development — where the brain is more susceptible to learning new skills and absorbing knowledge.” This stage is known as early intervention. If intervention begins only after this stage, your child will still be able to learn but the process becomes far more challenging.
Dr. Rajini points out that this is a journey that’s not just for the child but for parents too. “It is easier to work with parents when kids are younger as there will be a significant change in daily routine and there is a need to adapt to new things. When parents have set a routine, it is difficult to change that.”
Work As A Team
Having the right people to work with your child is essential as each treatment or developmental program is tailored to each individual child. This is because no two special needs children are exactly alike. Cheng Guek Leng, physiotherapist and Head of Rehab Services from ParkCity Medical Centre says that, “It’s all about team work and parents have the most important role. They have to learn and also co-operate with the therapist.” More often than not, the child is given more than one type of treatment. “As a tip, discuss with each medical expert and set a realistic target.”
Cheng also adds that, full commitment is needed from parents. “Medical specialists can help but parents must also help themselves as well.” The treatment should be ongoing and the intervention (as taught by the therapist) should continue at home to ensure that the child’s progress is not affected.
Going to a reputable center and ensuring that your child is well taken care of is important. While most doctors may recommend intervention services at trusted healthcare centers such as hospitals, some parents do opt to send their child to independent or private groups for treatment. Dr. Rajini advises parents to ask for the therapist’s or medical expert’s qualification. “If there is nothing to hide, they won’t be offended,” she assures.
Stop the Negativity
Besides getting the right help, much support and education is still needed to ease the burden of parents of special needs children. “By seeking the right help, parents also get educated about the problem,” says Dr. Rajini. Sadly, many people tend to stigmatise or discriminate against families with special needs children. This often results in some parents keeping their special needs child hidden at home. “I am a believer of God,” says Dr. Rajini. “I believe that God gave parents special children because He knew that they would give their child the right environment.”
Her advice is to participate in support groups for parents with special needs children. Help is also available from the government but the support received depends on the parents’ financial background. “This can be diffi
Dr. Rajini also says that the need to educate the public is vital. “People need to learn to accept special needs children and to be tolerant.”cult for some especially when parents are unable to obtain insurance for private healthcare.”
If you suspect that yours is a special needs child, speak to your child’s paediatrician for advice on th
e next course of action. Do not hesitate to raise your concerns about your child’s development or behaviour. After all, every child deserves the right to live life to the fullest.
The Expert List
Baby & Beyond Child Specialist Clinic, 03 – 2282 9028Dr. Rajini Sarvananthan (Consultant Development Paediatrician)Finding it difficult to get connect with the right people to work with your special needs child? Here is a list of experts and centers that you can get in touch with.
Dr. Lim Wye Keat (Consultant Ear, Nose, Throat)
Assunta Hospital, 03- 7680 7000
Dr. Jason Cheong (Dentist)
Jason Cheong Dental Surgery, 03 – 2287 9187
Cheng Guek Ling (Physiotherapist)
ParkCity Medical Centre, 03- 5639 1212
Petaling Jaya, 03 – 7722 2437Bridges EIP Center
Sau Seng Lum
Puchong, 03 – 5882 9181
Small Wonder Children’s House (Special-child friendly kindergarten)
Subang Jaya, 03 – 5632 7908
Early Autism Project Malaysia
03 – 2094 0421 or www.autismmalaysia.com
Kiwanis Down Syndrome Foundation
03 -7803 0179
Parents Support Group for Special Needs
Mums Speak Up
Four optimistic and lively mothers of special needs children — Yvonne Leong, June Tey, Think Ong and Gina Siew — share their personal experiences and their hope for society to discard negative perceptions about special needs children.
- Urban Health: From your experience, where can parents seek help if they suspect their child requires special care?
Leong: Paediatricians. From the moment the baby is born, you take the child to the paediatrician every month. Being first time parents, we wanted the best for our baby so I took my son to a well-known paediatrician. Unfortunately, our visits to the doctor were very brief because the doctor was too busy. Every paediatrician should know the normal growth and development of a child and should be the first person to spot a problem.
Tey: I wasn’t aware that my child required special care at the beginning. It was only when she was 2 years old that I suspected something because she did not respond when I called her name nor had she learned how to walk. The doctors did not tell me anything and I felt like a lousy mom.
Ong: If the child has no physical disability, kindergarten teachers should pick up any learning disabilities such as ADHD or autism.
- UH: What is the key challenge that you have faced when getting help for your special needs child?
Ong: Getting my child into the right school. When we were searching for a kindergarten, one of the principles of the school told us that parents of the other children would threaten to withdraw their children from the school if there is a special needs child there. It was so disheartening to hear.
Leong: Therapists are also scarce. We have to wait for months to get an appointment with an expert and the waiting list for centers is usually very long.
- UH: When getting help and support for a special needs child, what are some of the character traits parents should look for amongst those who play a role in assisting and improving your child’s life?
Siew: My child had a viral infection and his peadiatrician recommended an Ear, Nose and Throat (ENT) consultant for us to see. I was so reluctant, insecure and skeptical about it because I had never heard of an ENT doctor who knows how to deal with special kids. However, after my husband and I spoke to him, we were confident that the doctor was the right one. We knew because he spoke so patiently and clearly explained the condition. Not many doctors do that.
Tey: The problem is, some doctors have years of experience but unfortunately they are too busy to clarify and so on. We need doctors who can explain the situation clearly to the parents.
- UH: How should parents prepare themselves financially when it comes to getting additional medical and developmental support for their special needs child?
Tey: Save as much money as you can! There is minimal financial support from others. For instance, the government only gives us a small amount of tax deduction and you must fulfill certain criteria. I bought insurance for my child when she was a baby but when we wanted to apply for a medical claim, we were not entitled to it because the doctor’s letter stated that my child had a chromosome issue. I was left with no choice but to cancel the insurance plan as it did not serve any purpose anymore.
Ong: Some parents save up for their child’s future. However, I think it is better to invest in discovering the child’s maximum potential and to work on that during their developmental years. It’ll help you in the long run because you have helped the child to become independent.
- UH: As parents of children with special needs, what is your most important piece of advice to other parents raising special needs children?
Ong: Learn to count your blessings. It can be challenging but you are still able to see your baby smiling and you can hold him or her in your arms. Also, focus on the things you can do and not those that you can’t.
Siew: Always stay strong and healthy. Take one step at a time. We never thought that we will be travelling with our child but we are getting closer to that day.
Leong: Be part of a support group. Everything you do is for your child. A belief in God also helps because you will understand and accept that sometimes, things are beyond your control.
Tey: Always be happy. Children are sensitive. What you feel is felt by them too.