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Climb every mountain

Only informed parents will be able to help a differently-abled child, says Fiona Scott

Parents who have a child with a disability or a chronic illness know that they are facing an uphill task, a steep arduous road, an unexpected passage and an unknown destination. Conditions such as impaired hearing, impaired vision, developmental challenges, cerebral palsy, learning disabilities and emotional disabilities fall broadly under this category. Besides all the technical and medical difficulties parents face, they have yet another stumbling block to overcome and that is, dealing with their own fears, guilt and insecurities. And unless they have achieved control over their own feelings, taking care of the child in the best possible manner is neglected.

Coping with the grief

Feeling grief stricken is perhaps the first feeling that parents go through. We do not expect a child to be less than perfect. So grief is understandable and normal. The stages of grief follow a pattern: shock, denial, sadness, anger and finally accommodation. Grief reactions become worrisome when even after a period of time one or both parents completely stop functioning and become extremely withdrawn.

Feelings of guilt

Reliving the pregnancy and believing that you are responsible for the situation is a universal reaction. Despite reassurances from medical professionals, that it is an unfortunate accident, parents go on blaming themselves and begin to live in the `if only' zone. "If only I hadn't taken that medicine, none of this would have happened."

The informed parent

Once parents come to terms with the child's condition, it is essential for them to find out as much as possible about the child's condition. Information from doctors, books and the internet can all be complied into a file that can be kept ready for your reference and for others who want to help. Organising hospital visits, therapy sessions, diagnostic tests and school visits can be quite overwhelming and here it becomes important to seek the help of someone you trust.

The child above all

Do not label your child according to his disability. He is a human being first and despite all the challenges life has thrown to him, there is a person underneath it all who is just as normal as anyone else. So develop an understanding of how he responds to a situation, what makes him happy, what frustrates him and you will find yourself becoming more comfortable with your child.

Other important relationships

Being a parent of a disabled child can be physically and emotionally exhausting. Your other children may feel that this child is getting all the attention and they begin to feel quite left out and also may begin to resent their sibling. It is a difficult balance to maintain, especially when there are severe time constraints. Perhaps telling your children that you love them and involving them in the care of their brother or sister may help them realise that there is no mystery behind this and they may also develop a love and compassion that they never felt before.

The relationship between husband and wife may also deteriorate because of the tremendous pressure and it takes open communication, love, support and trust to maintain the relationship.

Separation anxiety

Sometimes you may feel like taking a break and this is quite understandable. Leaving your child in someone else's care can be quite difficult. This is because you and your child will go through the pangs of separation anxiety as with any other parent and child. Neglecting yourself and your needs will only lead to resentment towards yourself and your child in the long run. You can only give your best when you feel your best.

Taking care of a disabled child definitely takes it toll, but many parents also express the joy of loving their child, the empathy and compassion that it evokes in them and the strengthening of bonds between both parents as they look to the future, uncertain of the kind of challenges they may face but certain of the love that they feel for their child.

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