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Special Parents of Special Children
By Dr Lavina M Noronha

April 4, 2011

Caring for one who is unable to care for oneself is not very easy. Parents of children with special needs know very well what the challenges of parenting are. For them, it does not end with pre-school years, it is a life-long process. A lot of patience, energy and compassion are required of parents when their childrenís abilities are compromised.

When children have physical challenges, muscular dystrophy, spina bifida, autism, and other such conditions, the parents have to do a double dose of parenting which can take a toll on their own health and well-being if they donít exercise caution. This write-up is dedicated to all those special parents who toil day after day to be the best parents they could be to their special bundles of joy.

Birth of a child with special needs has physical, psychological, spiritual and social challenges. When a child is dependent on a parent to fulfill even the basic needs, it could be a strain due to the amount of work involved. In the absence of adequate support, care-giving can be very stressful.

A mixture of emotions and feelings are associated with being a special parent. Initial state of shock is sometimes followed by hopelessness, helplessness and self-pity. Anger, fear, anxiety, sadness and guilt surface every now and then. "Why me? What have I done to deserve this? Am I being punished for something I have done?" These questions haunt parents for long periods of time but there is nothing unusual about feeling this way. Some mothers go to the extent of blaming themselves and ask "Did I not take care of myself when I was pregnant?" As if that were not enough, there are some in-laws who are cruel and ignorant who make matters worse. All said and done, as time goes on, most parents pull themselves up and get ready to face reality head-on.

Fear on the part of parents is legitimate too. ĎWhat is going to happen to my child when she is five, what when she turns twenty-five, who will take care of child while Iím gone?í clearly spell out the anxiety of parents. To add to these, there are crises like seizures, falls, accidents and health problems due to compromised immune systems of special children.

Two-parent families are a little better off because the spouses are more likely to support each other emotionally. On the flip side, one parent being over-involved, spending more time with the child can also cause friction between the spouses which may even threaten their marriage. When there is a single parent bearing the burden of care, it becomes harder.

Being a sibling of a child with special needs is not very easy either. The child with special needs naturally requires and gets more attention and time from parents which the siblings may resent. The siblings have to pretty much fend for themselves and not depend on parents for emotional support. There are chances them getting lost in the family.

When children need special therapies (speech, physio), mobility equipment like wheel chairs, limb braces, walkers and other gadgets, it could be a strain on familyís finances. If these challenges are not enough, nosy extended family and friends could also make matters worse if you do not set limits. Answering questions from extended family, friends and so called well-wishers can also take a toll. They have different theories about what caused the problem, why your child is born this way, what could have been done, what should have been done and so on. It would be wise to firmly tell them to mind their own business.

As parents, you may get a lot of unsolicited advice on what you should do and should not do sometimes even from total strangers. It may be difficult to keep your cool when people just drop in to "gape at your child". This is especially painful for parents whose children have obvious physical anomalies. If you do not entertain them, they may brand you as being Ďpeculiarí or "secretive." Basically many people are ignorant and do not know how to react or behave when they see a child who is different. Parents could try and educate them if they have the time or the patience, if not, it is better to ignore them and their insensitivities.

Given the above challenges, here are some tips to help you in caring for your child and for yourself:

Interact with other parents who have special needs children and share your feelings and frustrations with them. They understand you better than someone who has no clue about caring for a special child. Besides, there is solace in knowing you are not alone, there are others who are fighting the same battle.

As a parent of a differently-able child, you are special too. Generally, such parents are more sensitive to othersí needs, are compassionate and responsive.

It is important to know your limits. Learn to say "No", take time off from care-giving for yourself. If at all possible, get out of the house for some time every day.

You have to pay special attention to your own health and well-being. Remember, if you donít take care, you cannot give care. As care-givers of a physically challenged child, you have to do a lot of lifting which could be a strain on your back. Youíve got to watch your back, literally!

Do not attempt to do it all yourself. Learn to delegate some chores or errands to other family members or friends who offer to help.

Watch out for signs of depression- crying spells, helplessness, hopelessness, guilt, aches and pains, sleeplessness, decreased appetite and so on. Get professional help if needed.

Try to get at least 6 hours of sleep every day. Try to eat nutritious meals and on time.

Learn about your childís condition and know what his/her needs are.
Communicate effectively with doctors and other professionals. Donít hesitate to ask questions.

Caregiver burnout is real. Look out for symptoms of irritability, anger at the person, neglect of self care, feeling of exhaustion, difficulty sleeping, lack of energy, etc.

Build your support system. Have a friend handy who can be there when you need someone to listen to (without giving you advice).

 

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Comments on this article
Prisha Mascarenhas, Kirem,mangaloreThursday, April 07, 2011
Thank you Dr. Lavina. Very good article. I wish every individual those who do not understand the feelings, emotional & physical struggle of parents of those special need children go through should read to be empathetic and not criticizing.
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Ashley Fernandes, MangaloreTuesday, April 05, 2011
Dr Lavina, very well put in words...God bless all parents for what they do for us.
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D M D' Souza, BantwalTuesday, April 05, 2011
Agnes D' Souza,us-Thank u very much for your kind thoughts & suggestions. My child is attending a school for special kids in Mangalore, where we are getting good help as well as advice from psychologists in caring for these children, who throw temper tantrums which is causing my wife to have tension, depression & migraines.
We too had the question why us?-but we found, God knew we can take care of his child better than those- whom he has blessed with more wealth. Our wealth is Goodwill of people like u. May be it is a mission God has ordained us with. Thank u once again for your prayers & showing us we are not alone.
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Agnes D'Souza, U.S.Monday, April 04, 2011

Mr. D.M.D'Souza
It sounds like a parent of special need kid. Hats off to you for just being able to put up with people's inquistiveness. I am mother with two healthy kids who are doing well at school but yet I get tons of unsolicited advises each time I visit India because they are not "fat enough" or "fair enough" for a kid who lives in U.S.

I have a standard reply "you should come visit us and meet our kids doctor. May be you can explain them better". Then there are other who ask both in India here in US (Only immigrants from India) "how come you are not working". Staying at home and not craving for more money but instead taking care of children is not acceptable lifestyle anymore!!. Mr. D'Souza we will pray for you and know that your family is not alone. Many of us are in similar situation sometimes because what we chose to believe in and sometimes because God has given us no choice but to bear our crosses for the Glory of His Name! God will bless you abundantly in so many other ways and time will tell you that!! Please try and form a "support group" if you can. It will give a lot of relief to many parents just being able to express one's feelings.

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Richard Tauro, Mangalore/DubaiMonday, April 04, 2011
Dear Dr. Lavina, Thank you for writing the very informative article. I wish every individual reads this, and understands the pain, struggle, physical & mental strain, the Parents of such children go thru in their life in taking care of them.
What you have written is very true, because, we are experiencing, since, we have a bedridden, special needs child, who is now, 16 years old. Hats off to my wife, who is with her full time. Hope, this article, will be an eye opener for some.
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D M D' Souza, BantwalMonday, April 04, 2011
Thank u very much for putting what the parents go through when caring for special kids-in precise short & sweet way. This should open some highly literate, but ignorant people who interfere without asking or knowing what the parents are going through.
Now I can ask them to go through your article, before making unsolicited remarks or diagnosis behind our back.
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