Raising Challenged Kids

Raising challenged kids
by
Reema Bansal

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 challenged 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 with head-on. 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 your child is not less beautiful than others, but, differently beautiful. So, 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, s/he also has strengths & weaknesses, likes & dislikes, ups & downs. It’s just that these need 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, challenged 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 you’ll know about the condition and available help, the better equipped you’ll be 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.
When asked if details of the problem should be disclosed to the child, here is what Delhi based counselor and psychotherapist (rehabilitation of the disabled) Dr. P. Sahajpal says, “Tell children as much as is essential, 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.”
Dr. Sehejpal, who is also a parental counselor in All India Federation for Welfare of Mentally Retarded, further stresses the importance of parental involvement in child’s life. Studies conducted on mothers of speech impaired and mentally challenged 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 - planning a picnic or going for a movie, exploring career options or summer classes…every activity will entail giving a thought to the handicap. 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, let them 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 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 disabled people. For one, the child must know that s/he is not the only different one. Secondly, it serves as great source of moral support, guidance and information. Dr Sehejpal suggests talking freely about the handicap in such groups as this will lead to a ‘catharsis’ whereby your child will learn to comfortably accept him/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.
Physically challenged children 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 to others.
At times, your child will need a shoulder to cry on; give yours, it’s not easy being challenged. However, don’t let any resentment build in yourself or your kid. Teach him/her that Nature is not unjust…but its ways are beyond human comprehension.
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, awareness is on the rise. People won’t know how to help unless you tell them. If your Attention-Deficit-Hyperactivity-Disorder boy needs 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 afflicted with 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 disabled member changes the entire atmosphere of the household. Special care needs to be taken lest the non-disabled siblings start feeling ignored, or the disabled child 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 disabled sibling.
• Over-protectiveness towards the disabled sibling
• 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 of the disabled sibling.
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 challenged one; 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’.
Quoting Dr. Stromer’s words, “Part of your child’s happiness will come about if s/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.”
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. Quoting Dr. Sehejpal, “Let certain things stay the way they are. Humans show remarkable functional adaptations, provided they don’t tamper with everything that seems to be amiss”. She gave the example of a girl who had a deformed right hand thumb since birth. However, she was managing well (holding things in a particular way), till her parents got her operated. Though the thumb looked normal now, the girl was at a loss as to the way she would use it, and had to resort to her left hand.
In Nutshell…
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 basket ball 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.


Sidebar
Challenged people 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.