Sahil and Anita, a doting couple, were exuberant when Anita gave birth to a boy. But not for long; as the baby had cerebral palsy, a brain-damage characterized by paralysis and motor dysfunction. While Sahil went into depression, Anita found it difficult to even look at the baby.
Raising special-needs kids can be a very daunting experience. Perhaps none other than the parent, who goes through it, knows it. But it need not be all that bad, provided it is dealt in a right way. Fortunately, humans have the potential to adapt to any situation in the best way. Sahil consulted a counsellor, and Anita began to acquire knowledge about her baby’s condition to raise him accordingly. A slightest malfunction/damage can lead to multiple types of abnormalities. For bringing up such kids who are different from others, certain suggestions go common for all parents…
Not the End of the World
Firstly, know that the child is not less beautiful than others, but, differently beautiful. So even though it’s hard, keep a basic flame of optimism aglow. It’s perfectly natural to feel shocked and devastated initially, but with time, you’ll realize that like everybody she/he also has strengths & weaknesses, likes & dislikes, ups & downs. It’s just that this needs special channels to get tapped and communicated.
To quote from Dr. Walter F. Stromer’s famous address at the Indiana School for the Blind,
“In the entire history of mankind, the present is the best time for people with disabilities”
With endless tools and gadgets at hand, ample clinical guidance available, and enough research being undertaken in various psychological and physiological fields, special-needs people don’t lack options today – provided these get sufficiently explored. And, the scene is becoming further disabled-friendly with time.
Educate Yourself
Information puts fear into perspective. The more one knows about the condition and available help, the better equipped one is to deal with it. So, get relevant books, see the physician regularly, meet people with similar (and different) disabilities, log on to internet; but take care not to apply the worst that you come across to yourself.
Tell children whatever information is essential for them to know, but with care lest it mars their self-esteem. However, as they mature, you may start revealing more; they must know their condition in entirety to be able to grow into well-adjusted & independent individuals. Also, don’t sound regretful; kids are very sensitive recipients and intuitively perceive the tone of any conversation. Studies conducted on mothers of speech impaired and intellectually disabled children have shown that undergoing training in accordance with their kids’ disability helps the mother contribute to kid’s development more efficiently.
Lead a normal life
Round the clock, whatever you think/do from planning a picnic or going for a movie to exploring career options or summer classes; every activity entails giving a thought to the disability. No doubt, it’s important for you to be cautious about things, but don’t let it stop you from enjoying a normal life. Instead of treating the problem as an additional burden, think of it as another thing to be managed – like budget or time. It’s easier said than done, but, with practice, this approach will get reflected in all your behaviour and imbibed by your children. For this, be like any other family – let siblings fight, party and let the child participate in as many activities as possible – laying dinner table, school trips, birthday parties etc.
Social Life
Bombarded with questions, stares and suggestions by people, you might want to alienate yourself. But, you (and your child) have to stay in this very society; so as to learn to deal with people’s curiosity in an articulate manner. If you accept your situation, your child will accept his and understand that it is people’s discomfort upon seeing an apparently disadvantaged individual which makes them question/sympathize; they don’t know how else to react. So, teach your child to give them short satisfying answers leaving no ground for more queries. As the saying goes,
“nobody can make you feel inferior without your consent.”
Also, it is essential for your kid to interact with other people with disabilities. For one, the child must know that she/he is not the only different one. Secondly, it serves as great source of moral support, guidance and information. Talking freely about the disability in such groups will lead to a ‘catharsis’ whereby the child will learn to comfortably accept himself/herself.
Sturdy Oaks, not Delicate Tendrils
You’ll be tempted to ignore most of your child’s mistakes; but don’t do that. He needs as many rules & regulations as other children, as many reprimands & praises, and as many joys & sorrows. Give a considerate upbringing, not lenient.
Children with physical disabilities should become so knowledgeable that the disability takes a back seat in their persona. Encourage the development of hobbies and stimulate their interest in games. Give them tools, gadgets, aids…and give them confidence in themselves. Let the kid set his own standards and not compare himself/herself to others. At times, your child would need a shoulder to cry on; give yours, it’s not easy being a person with a disability. However, don’t let any resentment build in yourself or your kid.
Don’t Hesitate
At every step, you and your family will feel different from others. Accept it, and go ahead – whether it means approaching school authorities for special arrangements or appointing a full-time nurse for your child. Though Indian schools and colleges don’t provide many facilities as of now, but awareness is on the rise. People won’t know how to help unless you tell them. If your Attention-Deficit-Hyperactivity-Disorder boy requires monthly visits to a psychologist, do it; for as long as an action helps the child, people’s remarks shouldn’t matter. Teach your kid to laugh it off when others act curious. A friend of mine who is suffering from a neural disease, always carries a big pair of scissors to cut open chips packets, chocolate wrapping and medicine packing as her hands lack the strength to tear them open. Though people find it weird (her disease doesn’t show itself overtly), she simply smiles at their curious looks.
You and your family
Having a member with disability changes the entire atmosphere of the household. Special care needs to be taken lest the non-disabled siblings start feeling ignored or the child with disability begins to feel like others’ responsibility or the lack of time and energy begins to affect your relationship with your spouse.
Issues faced by the non-disabled sibling:
- Adjustment problems with a brother/sister, who, because of the disability, gets a larger portion of family time and attention.
- Feeling embarrassed among peers due to the appearance or actions of the sibling with disability.
- Over-protectiveness towards the sibling with disability.
- Guilty feelings while enjoying activities that the sibling with disability can’t.
- Experiencing jealousy because they may be required to do family chores, while nothing is expected from the sibling who is suffering from disability.
To prevent these, parents must sit down and talk to children about what a disability really means (both physically and mentally). Further, don’t ask the non-disabled sibling to take care of the one with disability; ask them to take care of each other. Set the tone for sibling interactions (and attitudes) by example and by direct communications. Also, very importantly, make sure that you spend quality time with your spouse, for you haven’t lost the right to enjoy life. Additionally, kids feel secure upon seeing their parents in love with each other.
Believe in yourself
Listen to all advice but go by what you feel is right. No doctor, counsellor or therapist deals with the disability 24/7. You’ll be doing that. So, though their suggestions and guidance are essential to help you have objectivity, ultimately it’s your everyday experiences and observations that will guide you the best. Also, don’t discuss the disability with everyone you come across. For one, it’ll hurt the child’s sentiments. Secondly, majority of people view disability as a curse, so either they’ll sympathize with you, talk about a relative with similar problem, or mention some ‘miracle cure:
“Part of your child’s happiness will come about if she/he sees you as parents who find life enjoyable and challenging. So – have a zest for living, a spirit of wonder, and a confidence that the problems of life can be solved. Finally, listen to the experts, but also trust yourself.”
-Quoting Dr. Stromer’s words,
Don’t Overtax Yourself
Finally, don’t tire out yourself completely. Maintain your health and let your children see you happy… just as you would want to see them. Everyone has limitations, so don’t try to control everything.
Finally…
Sahil and Anita had their second son after five years. He loves his elder brother Vikram, who is now fourteen and participating in as many family activities as he can. Also, Vikram’s expressions reflect peace, not discontent. Dr. Stromer suggested a very effective line of thought… Isn’t everyone disabled in one way or the other? A teenager might be extremely conscious of her appearance, your dad might be too short to become a basketball player, XYZ might have a voice too hoarse to sing – ultimately everything rests on how the individual views himself herself. So, work on making that view positive.
“People with a disability experience high levels of guilt if others miss fun on their account. Hence, with them, the importance of planning can’t be overemphasized. Barring the inevitable happenings, efficient planning always increases the chances of success. For career prospects, critically consider the pros and cons of various options. Consider issues like mobility, communication capacities, finances for emergency, and the individual’s own preferences. Don’t let your worries about the future show; but convey the necessity of being organized, systematic and realistic. For severe disability, a file detailing the individual’s needs, limitations, medical history, and contacts should be kept in a safe place, known to all family members.”
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