A disability like cerebral palsy affects each person in a different way and therefore no two families can have the same experience when it comes of their child's care.
By Dr Vandana Sharma
It is a tough job to raise a child in today’s world. The task becomes all the more difficult when you have a specially-abled child as just getting simple tasks done can be extremely challenging, while juggling work and doctors’ appointments simultaneously.
A disability like cerebral palsy affects each person in a different way and therefore no two families can have the same experience when it comes of their child’s care. Many workshops and interactions with professionals are conducted to help such parents give a better quality of life to their specially-abled child. Here are some expert tips for parents:
Ignore what others say
It is very common for parents to hear that they have not worked hard or long enough with their specially-abled child. Friends and relatives often make statements like “If you would just do this at home for 15 minutes a day on the weekends, it would make such a difference,” or “If only you would take the time to train him to use the toilet/feed himself/manage his emotions/cut up his food every time/etc”. However, all these things may not be able to make any difference. In fact, it is much more important to enjoy all the time spent with your child and this will probably have a stronger impact.
There are limits to what one person can do. It would not be right for a parent to expect to think about his child all the time. A child with cerebral palsy should not be the centre of attention. One should not expect the parent’s life to revolve around the specially-abled child. Often, it happens the child sets the schedule and tone for the entire family. A parent must learn to recognise his and the child’s limitations and allow the latter to examine the situation before responding in anger, fatigue or frustration.
Becoming the expert-in-charge
You know your child better than anyone else as you have spent most time with him. You know what works and what doesn’t; you have the big picture and history and can utilise this in any situation. Support personnel come and go but you are the expert with the experience and first-hand knowledge of your child. As the expert you have the right to be in charge of educational, social and medical and other decisions, at least until your child can do this for him or herself.
Have fun with your child
It is not necessary that every activity should be turned into a ‘therapy session’; this can create a lot of pressure on both the parent and the child. It also takes away all the pleasure from the activity. Compelling your child and yourself to finish a set of fixed tasks in a given period of time won’t help. Assisting and helping a child with cerebral palsy is not a matter of a day or two. Having fun together would be far more beneficial.
You should not aim at becoming your child’s therapist or teacher. Therapy and educational activities at home are certainly beneficial but you need time to simply play, tickle, giggle and tell stories. This playtime would become the most important part of their ‘education’. The love and social skills learned by the child through this would contribute to their self-esteem.
It’s alright to be unenthusiastic sometimes
No one expects you to be ‘turned on’ all the time to addressing the disability of your child. There may be times when you are feeling sad or worried, or you are unwell. It is not right for others to think that you are ‘not adjusting’ or that you’re ‘not accepting your child’s disability’. No one is excited about work every day and the same is true of parenting. There will be days when your child thrills you with joy and, on the contrary, there will be days when parenting will seem like the most boring job on earth. It’s all okay.
Taking time off
As a parent, you need time to yourself, with your spouse or partner and other family members. Many parents describe the first time they went to the grocery store alone after their child was born as a tremendous feeling of freedom — even though they were doing a chore. There are many people involved in your life and each one deserves as much attention and nurturing as your special needs child. A stress-free parent is any day a good support system for your specially-abled child.
Not only professionals, but family and friends also can exert tremendous pressure on you as a parent of specially-abled child. Parents must realise that they are probably the single most important resource that a child with a disability has and most often their only friend and advocate. It is always better as a parent to surround yourself with supportive people and professionals, who will respect this.
In a marriage where marital adjustment is poor, the stress of dealing with a specially-abled child can cause the family system to collapse. On the other hand, in a relationship that is strong and relatively non-stressful, a child’s disability may increase closeness and strength in a couple’s marriage.
(The writer is Director and Principal, Mata Bhagwanti Chadha Niketan.)
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