Monday, 30 April 2012

The Disabled Dilemma


When I learnt that my daughter would be born disabled I cried incessantly for several days.  I was hurting deeply and didn’t want to talk about it or anything else with anyone.  Feelings of inadequacy eroded my self esteem and I felt like I was a failure.  With the help of a few close family members it took only a short while for me to see the situation in a different light and soon the clouds cleared and I am now the proudest mom ever.

My daughter takes a longer time to learn activities that come natural to most of us but apart from that, she is a normal child.  Since her birth five years ago I have started my own company, written two books and have a series of published articles and paintings – activities that I certainly would not have had the time pursue if I were not forced to take time out to care for her.  She had to come into my life to help me to unearth my latent talents that otherwise might never be explored or shared. Many of us have experiences that change us, alter our direction in life. It is for us to appreciate the change that needs to be made and the opportunities presented, even if we do not understand or like the way they are delivered.  I have now set up a not-for-profit organization that benefits disabled children in my native Caribbean – a venture that would never have crossed my mind had I not had this experience.  I am now in a position to encourage others who find themselves in a similar position, an activity I would not have been qualified to conduct if the circumstances were different.

When you hear of or see a child with a disability there are certain protocols that you should bear in mind when making comments.  Unfortunately most people risk saying the wrong things.  Many people avoid contact with the family because they don’t know what to say.  This is unfortunate because this is the time that your friend needs you. 

First, it is important to understand what the family goes through when a child is born with a diagnosis.  Some people go through a grieving process as if a death had occurred.  Some grieve for the child; others grieve for themselves and what it may mean for their family.  This is no time to be judgmental; people have different ways of dealing with situations. Parents go through the grieving process at different rates. Some never make it all the way through. Many will revisit the process over and over again throughout the child’s life as limitations unfold.  Feelings of denial, anger, hopelessness and depression constantly vie for their attention. Those who are earnest persevere and often reach the point of acceptance and love.  As a mother of a disabled child who has experienced a wide range of emotions, I would like to share some ideas in terms of how to deal with parents and their disabled children.

Before I suggest what to say, I believe it is important for you to understand what NOT to say:

i) "I’m Sorry." "What a Shame." "How sad." "Poor thing.” or any statement that conveys pity
What are you sorry for? What did you do?  The child is an individual and must be seen in that light.  Surely they are not here for your pity.

ii) Statements like, "It could be worse." "At least your other child is normal." "He’ll never be able to drive a car." "How severely is he affected?"
No matter what the diagnosis is at the time nothing could be worse to the parent.  Who are you to judge?  The fact that the other children are “normal” does not erase the fact that this child has a disability.  It doesn’t help to hear of the severity or the impact of the condition; chances are, the parents are aware. Often these presumptions have no bearing on the truth and many disabled people lead normal, independent lives as adults.  For some parents these comments are like driving a nail in a coffin.  They are very unhelpful and does not reflect well on you.

iii) Any statement that puts blame on the parents or suggests that they had it coming
This is particularly true of parents whose children have been diagnosed with Autism or Attention Deficit Disorder and children with speech delays. Don’t say, "It’s a result of family problems." "I heard it runs in families, so I guess you are responsible for your child’s problems." Maybe if you were a better parent you wouldn’t have this problem." "What did you do wrong?"  I actually had someone asking me what my age was and when I told this supposedly intellectual high powered woman she said, “Well…” as if to say, what did you expect?  I wasn’t exactly 20 but young people have disabled children too. Now I think about it and wonder why I didn’t tell her where to go but I console myself with the idea that I was particularly vulnerable at the time and might have regretted any utterances I rendered.  What authority does anyone have to pronounce ill fate on people?  Words may be wind to some but it is death to others.  If you have nothing good to say, it is better to say nothing.

iv) Don’t suggest that God knows best
God has a purpose for every life; a purpose that will be revealed in time. When parents are grieving they sometimes become irrational.  They can appear to lose their faith (if they have any); they are not interested in being special parents, all they wanted was a “normal” child.  I have a friend who told me that God knows best and I asked her “Which God?” though I have been a Christian all my life.  By prophesying to parents you are not making the situation any better; chances you are making them angrier as they lament over the hand that they have been dealt. 

v) Greatness. Don’t tell parents "I couldn’t do it." I couldn’t handle it." "You are great."
These statements imply that disabled people are so terrible that only an extraordinary person would be able to love and care for them. In addition, it adds to the desperation of the parents, causing them to ramble in the tunnel instead of seeking the light.  Ordinary people have no real desire to be great at the expense of a disabled child.  They have the same dreams and hopes of other parents, they want their children to be healthy and to be able to reach their full potential.

People usually do not mean harm by the above statements. But always think before you speak.  Fear of the unknown should to be confronted by learning.  The comments are usually made with good intentions but try replacing them with the following which are usually more comforting and appreciated by parents:

1.  Say "Congratulations"
Yes, Congratulations. They are new parents after all. They did go through the pregnancy, and labor and delivery. Like any other new parent, they deserve to be congratulated.

2. Offer help
Actions speak louder than words. Friends and relatives that actually do something make more of an impact than any words they could say. Offer to baby-sit, make a meal, sort out the clothes, pick up things at the store, obtain information on the internet or any other useful chore.  This shows acceptance and makes the parents feel normal.

3. Compliment the child and the parents
"She’s a wonderful baby and lucky to have parents who love her." Use the child’s name.  If you feel that the parents need reassuring you can say "I’m sure this presents many challenges, but I know you will cope”. "Your new son will face challenges in life, but all of us do, and he has the best possible start with you”.  “What he needs most is something you have lots of - love." “Remember, that no matter what they tell you trust your instincts and s/he will be fine." “What a pretty smile!”

Parents do not feel strong at that moment and don’t want to be told that they are.  However, words of encouragement and support will go a far way in alleviating their fears without making them feel patronized.

4.  Point out resemblance between parents and the child
"He looks just like his Dad. She looks just like you did at her age. She’s got your nose."  By doing this you are taking the focus off the disability and placing them on other attributes of the child.  The parents will be appreciative of someone who sees something positive in their child.

5. Show acceptance of the baby
“I am really happy to know ___(baby’s name)____;  I’ll learn so much from him/her.  I look forward to seeing him each time I come around.  “You must be very proud to have such a wonderful child”. Parents do not want lip service and do not like hypocritical behaviour.  If you cannot honestly say these things about the child, don’t utter them; people can easily spot insincerity and that would make the situation worse.

6.  Talk to the child
You don’t have to comment on the child’s disability. Talk to the child, interact with him/her and encourage your children to play with him. This means so much more than words.  If you are able to interact with the child in the parents’ absence, relate to the parents any story of something positive you observed their child doing.  That is encouraging and comforting.

Although society may consider the birth of children with disabilities to be burdensome, most parents of such children do not agree.  As a parent of a disabled child I can attest to the wave of love I feel when my daughter hugs me or when she giggles or crosses little hurdles and achieves milestones which, at one time we did not know that she would cross.  I am not here to advocate life, for people live in their own reality.  I am not interested in judging those who decide to terminate just because I didn’t.  What I can say is that there are joys to be experienced if you do decide to go the distance.  If you welcome learning, there is no bigger lesson in life than what you can learn from this child and because of this child.