Caring for special needs

An autistic child learns to speak next to his teacher during a therapy session at a school for autistic children in Tianjin municipality, China. The child with special needs should be part of the family and not the centre of it. - Reuters photo

Charlie, the lovely five-year-old, rushed into my consultation room when his name was called. He said: “Good morning, Dr Shan. Give me five.” And he made a five with me. His parents were so proud of him. Following this, Charlie started exploring the clinic. My staff had to guide him as I spoke to his parents.

It was Charlie’s review appointment. Charlie has autism. He was a totally different child when I first saw him two-and-a-half years ago. Very active and having no speech, he ran all around the clinic, and hardly looked at me. His parents were lost, stressed, feeling guilty and were at the end of their tether.

Autism is one of many special-needs conditions. “Special needs” is an umbrella under which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched.

Although every special needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including the stress and challenges that include getting appropriate care, promoting acceptance in the extended family, school and community, planning for an uncertain future, and adjusting routines and expectations.

When parents learn that their child has special needs, they begin a journey that takes them into life that is often filled with strong emotions, difficult choices, interaction with many different professionals and specialists, and an ongoing need for information and services. Initially, parents may feel alone and isolated and not know where to begin. When parents come face to face with the fact that their child has special needs, they become confused and go through a series of reactions.

It starts with denial, followed by anger, fear, guilt, disappointment, helplessness and rejection. Many mothers feel it is something they did or ate during pregnancy that has caused the special needs. It takes them time to realise that it is not so.

I have counselled many parents with special needs children. In the first session they keep asking me: “Why us? Why us?” When the counselling gets underway, the parents have described their feelings as follows: “The day my child was diagnosed as having special needs, I was devastated and so confused that I remember little about those first few days, except the heartache.”

Another parent said it caused a mental block. One likened the moment to a knife piercing his heart.

These descriptions may sound dramatic, but they are actually some of the emotions parents go through when they come to know of their children’s condition.

Most parents will put the needs of their special child ahead of their own or the other children’s in the family. In most cases, anxiety and guilt drive parents to do everything possible for their kids.

They feel anxiety over their child’s future, and guilt emanating from feeling culpable for their child’s cause of special needs. However , this over-emphasis may take its toll on the parents’ health, career, and relationships, siblings of the child, and family finances.

As the parents and family go through the stages, they realise they are not alone. Many mothers with special needs children have told me that having a good cry and talking to another parent in a similar predicament starts the journey to cope and come to terms with reality.

Coping is defined as dealing with responsibilities, problems or difficulties, especially successfully or in a calm or adequate manner. Coping strategies vary according to individuals and families. In general, to cope with the situation is important to seek information about the special needs your child has.

The information enables you to understand your child and the treatment required. In time, with the knowledge, experience, a positive outlook and taking one day at a time, you will be able to take the lead in the management of your child, and you will know when to consult the professionals.

Good communication between you and your spouse is important in the care of the child.

As men are from Mars and women are from Venus, or so they are said, you and your spouse may not feel and respond to the challenges in the same ways. It is when this communication fails and the stresses of dealing with a special needs child overpower that the relationship breaks down.

Divorce is not uncommon in families with special needs child. If the siblings are ignored, it gives rise to jealousy and resentment. Thus, the child with special needs should be part of the family and not the centre of the family. The parent should take care of themselves, their partners and their other children.

In many families, their strong faith in their religion helps to keep the family unit. It is important to try to keep daily routines as normal as possible.

It is not wrong to show emotions. In the process you will learn to deal with these emotions. If you can’t deal with the emotions, then you should seek professional help for yourself.

Parents have to remember they have to be well, emotionally and physically, first before they can help their children. Joining a group, reading books about their child’s condition, attending courses, taking care of themselves and their family, many parents may eventually come to terms and learn to cope with this unplanned journey.

How fast they adapt depends very much on the severity of the special needs, the individual parent, and the family and community support they have.

Dr Shan Narayanan is a consultant paediatrician. He will be conducting a workshop for parents on Managing The Emotional Impact Of Special Needs On Families, on Saturday, Nov 3, 2012, at Wisma WIM, Taman Tun Dr Ismail, Kuala Lumpur (9am-1pm). For registration and more information, contact Coreen of JPL Training Track at [phone] or email [e-mail].