When I learnt that my daughter would be born with a learning disability I cried 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.

Since my daughter’s birth ten years
ago I have started my own training company, written two books and became a
recognised inventor – attributes that I possibly would not have developed if
she didn’t come along at the time she did. With her help we developed a series
of educational development products that benefits children like herself. I was simply amazed to see how much and how
quickly she was able to learn vocabulary and written words using the system
which I stumbled upon. Now the multi-award-winning
Pocket Learner Educational Development System which empowers children deemed
slow or who have been diagnosed with Special Needs is a reality which I am
certain would not have come about without her existence and engagement.

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 am now keen to encourage others who find themselves in a similar
position, for I know that every child has the ability to learn.

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 my 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.

7. Bring a
gift

If you are someone who would normally
give gifts this is an appropriate moment to bring a gift. This shows acceptance and provides encouragement
to the parents.

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 the right to 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.