Parents urgently need support services2 June 2010
By MARY CHEN
MY youngest son was born 23 years ago with a learning disability. During those pre-Internet days, our main source of information was the doctors, especially my gynaecologist.
Call it maternal instinct, but I felt something was not quite right with my baby. I voiced my concern to my gynaecologist when I took my newborn for the first post-natal check-up two weeks after delivery.
I asked the doctor why my baby’s eyes were so small, and they were always teary and filled with mucus. To this day I can still remember his comment: “Oh, he has Chink eyes, that is why they are like slits and he must be ‘heaty,’ you need to give him more water.”
Later, we discovered he had blocked tear ducts when we took him to the ophthalmologist. It was really tough trying to pin a baby down to force his eyes open to clear his tear ducts. We could not sedate him because he was too young. At the end of the session, the female ophthalmologist and I were in tears.
What was I doing before that?
I was constantly cleaning his eyes, wiping away the mucus, experimenting with his diet.
Well-meaning family and friends recommended less heaty milk powders, cooling drinks, and herbal remedies for bathing, washing, and consuming.
During the first year of raising William, I had never felt so alone.
He was not taking to breastfeeding, and he was constantly crying. In the end I gave up and bottle-fed him. Yet he was not drinking well. There was always milk left over. I thought he had fallen asleep on the bottle. Looking back now, perhaps he just got tired of sucking because he had poor muscle tone, a common feature of babies born with chromosomal disorders.
Back then it was a constant experiment for me. Was the teat too hard? I changed to a softer one. It didn’t work. Was the hole too small? I made it bigger, but my baby started choking, so
I had to make a series of graded holes to find the one he was most comfortable with. Some mothers advised me to tickle his chin so he would not fall asleep on the bottle. That helped a little. Others told me to feed him in a certain position. I tried everything I knew to find the perfect feeding position, but there was none.
Feeding time during the day was not too bad. It was the night feeds that exhausted both of us. Each feed took half an hour at the least, and even then he finished only half the bottle.
Initially I kept the other half in a warmer, and tried to feed him half hour later. By the time he finished the bottle, it was only a short respite for me because he would be restless within an hour, and it was time to change his nappies. Cloth nappies were the norm then.
That was the routine – naps, cries, feeds, nappy change, water – for the first six months.
“Some babies are more fretful,” “he is not feeding well, that is why he is not growing,” or “you have a difficult baby.” These were some of the comments I received when I asked around.
In those days, we did not have the Internet, so a Google search was unheard of.
Sleep deprivation does strange things to one; I searched for advice everywhere. Even the best paediatricians in the Klang Valley said there was nothing wrong with him.
I was gripped by loneliness and helplessness. Twenty years ago, the doctor was always right.
“When the doctor said there is nothing wrong with your son, why are you looking for problems?” That was the feedback I got from family members when I told them I felt something was not quite right with my boy. I was plagued by doubts: Was I paranoid? Maybe I was not doing a good job of looking after this baby who was always crying, restless, and a little “floppy”.
When I took him to see a general practitioner for flu one day, the doctor told me: “Your child has Mongoloid features. I think you should see a paediatrician.”
But I had already seen three paediatricians, and all of them told me there was nothing wrong with my child.
The GP recommended a paediatrician he knew, and this time I was hopeful of an answer.
I saw the paediatrician and he confirmed that my child had “special needs”. However, he was not able to offer any guidance or direction. All he could say was to take the child home and treat him with lots of tender, loving care. I knew then that I was not just being paranoid. It was time to move forward. Of course, the journey and search for the next stage is another long story.
What I wanted to share is that the early years of infancy are crucial years for special babies and their families.
I wonder what is available for new parents today? Do they still go through this constant search for answers and resources? There is a great need for services and facilities for infants with disabilities. The Government must step in to take up this responsibility.
Based on various statistics and computations, we already know the expected number of potential needs. Last year 500,000 births were registered. Even if just 1% of this number has special needs, that would be 5,000 infants and families in need of support.
Is the Health Ministry and the Ministry of Women, Family and Community Development working together to provide emotional, medical and interventional support for this group in question?
If we look at the current budgetary practice in public service, there is a lag of at least two to four years before the service can be provided to this group. Why? Correct me if I am wrong but the normal practice is, when there is a need for a particular service and that need has been assessed, the procedure is to file an application to start a service for this group. If the application is approved, the request will be included in the next budget allocation.
So instead of us constantly chasing services and funds that would come too late to serve this particular need, we need a paradigm shift to ensure that such services are integral to the maternal care and childcare provided today. And this should be readily accessible to new parents anywhere in the country.
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 email@example.com.
For enquiries of services and support groups, call Malaysian Care ( 03-9058 2102) or Dignity & Services ( 03-7725 5569). E-mail: firstname.lastname@example.org