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 children’s 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 don’t 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. ‘What is going to happen to my child when she is five, what when she turns twenty-five, who will take care of child while I’m gone?’ 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 family’s 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 ‘peculiar’ 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 others’ 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 don’t 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. You’ve 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 child’s condition and know what his/her needs are.
Communicate effectively with doctors and other professionals. Don’t 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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