What do you consider to be a fulfilled life for your autistic Child?
The Oxford english dictionary defines fulfilment as:
The achievement of something desired, promised, or predicted: winning the
championship was the fulfilment of a childhood dream. It has also been
defined as:
satisfaction or happiness as a result of fully developing one’s potential: she
did not believe that marriage was the key to happiness and fulfilment. Lastly,
fulfillment has been defined as
the meeting of a requirement, condition, or need: the fulfilment of statutory
requirements. After going through these very beautiful definitions, I
am left very baffled at how many of us black parent still measure
our child’s fulfillment based on what the community and society at
large expects from them. We base our dreams and expectations so
heavily on our already very vulnerable children and end up being very
disappointed if our never ending exhaustible tick boxes of
achievements are not met. Children are all born differently and just
as the word “ differently” is so often used to describe their
abilities, so also is their fulfillment in life. My idea of a fulfilled life
may be very different from the next black parent that I come
across but our aim should be the same; to allow our children to
achieve their individual fulfillment in life. If that includes being able
to be the best shelf stalker in supermarket or the best engineer
that the world has come to know. Ultimately, both children should
enjoy and be happy at what they are doing and considered to be
their fulfillment. Let’s come to think of it, fulfillment in a nut shell is
happiness at the greatest level that anyone can imagine. So when we
hear people saying, I am a fulfilled man or a fulfilled woman, what
they really mean is I am as happy as I can ever wish to be. Should
that not be our goals for our children, to find happiness in whatever
they do? So why is it so easy for black parent with autistic children
to dwell so much on what other typical children can achieve and fail
to look at the fantastic and fulfilled life that our own children are
capable of achieving? I haven’t said that we should not aspire for
our children to become engineers , doctors or medical professionals
as well as scientist like most autistic parents dream that their
children will turn out to be but the reality of the spectrum is that all
autistic children as well as typical children have a capability.
Sometimes that capability is not able to be over stretched no
matter what efforts we put into it and the quicker we realize this
and nurture other great skills that are children have, the better our
chances of attaining perfection. There can be perfection in anything
any child decides to become with the right support from parents.
Are we still too caught up with the heavy blow that life has dealt
with us and we remain in despair and cannot rise up from our
slumber? Do we really want to live our lives in despair or look into
the future with hope which brings me to the next question? What is
despair and how does it affect each and every one of us?
Despair has been defined as “ the complete loss or absence of hope”
another definition has been given as “to lose or be without hope”.
Having gone through these definitions, it really becomes very clear
that we can easily find ourselves in situations such as this when we
feel that they sometimes do not fit our ideal expectations. I once
felt exactly like this and even though I asked myself over and over
again, what I did wrong during the pregnancy, or what I may have
done differently, I could not find answers. I stuck to the doctors’
instructions from the first time I discovered I was pregnant and
was as careful as I could ever be. Can you imagine that I could not
even run for the bus all through my pregnancy? I was that careful as
though I was holding an egg in a teaspoon and no matter how much
we search ourselves for clues, I can assure you that there are not
answers to those question and the only logical answer is that “ it’s
not your fault” After years of realizing that I could not have done
anything differently and picking myself up and stepping up to the
plate, I sometimes look at the English dictionary of the word despair
and feel how strong the meaning of the word despair is and how
difficult it must feel for other parents to feel this way. It’s little
wonder why some of us find it very difficult to see beyond the word
autism. Can you imagine a total loss of hope on someone you love so
much? A cherished being that you want to protect and keep safe,
how than can you not have hope in such a gift of life? Just as the
word despair means total loss of hope, there is a fascinating view of
life with hope in it.
Hope has been defined as the state which promotes the desire of positive
outcomes related to events and circumstances in one’s life or in the world at
large. Hope is the “feeling that what is wanted can be had or that events will
turn out for the best” or the act of “looking forward to something with desire
and reasonable confidence or “feeling that something desired may happen”
Other definitions have also included “ to cherish a desire with anticipation” “
to desire with expectation of obtainment or “to expect with confidence”.
That must be a relief to know that with hope, the future looks much
better. Hope is the one thing and only reason that keeps me going
and fighting to ensure that my children are receiving the best
quality of life. Hope make it possible for me to see fare beyond
autism and gives me the very buzz that I need to wake up with so
much excitement about the thousands of things that I can do with
my children. It makes me yearn to know more and want to show my
children this wonderful world we are in. Do you know that I
sometimes feel as though the day goes by so quickly and I feel that
I have not had enough time to spend with the boys. That is how
excited I am at spending time with my autistic boys and unless you
believe in hope, you will miss these great opportunities. I once said
to someone who told me years ago that I mustn’t be too hopeful
about my boys speech because my boys may never be able to speak
as some research in autism has proved that some autistic children
are non-verbal. As much as I am aware of this known fact, I was very
hopeful and determined and my instant response was that “ not my
boys because they will speak”. Hope come in different ways and
degree but one thing that is sure is that it give each one of us a
driving force to keep going. For me at that moment in time I relied
on hope for a voice from my children. You must be very aware that
not all autistic children are verbal but who says communication can
only be carried out verbally. We can communicate with our eyes, with
our hands and even with our behaviour. Lest not dwell so much on
who can communicate more verbally because that is really not the
only yard stick to use to judge how far or long the field of success
is. My experience with autism has taught me a great deal and as I
look back at some of those moments, I can only feel proud of myself
for trusting on hope. When my boys were just over four year old, I
like most black parent wanted to hear their voice at any cost and I
knew it didn’t matter at what cost of my time it was going to take, so
I would set out picture album in front of them at any moment of the
day when we were not busy and I would start mentioning “ mummy,
daddy”. I kept this up so long and that it almost seemed like a music
lyric in my ears. I mentioned the words “mummy, daddy” as much as I
would call out their names every second of the day and as I did this,
there was absolutely no response from the boys. I didn’t give up
even though a tiny voice in my head kept saying “ are you mad? How
often are you going to keep mentioning these words to them” But I
did and I did not relent and just like someone seeking a miracle, it
finally came. I was upstairs one afternoon and one of my boys came
up to me holding the picture frame that I have often held out to
them while mentioning the words” mummy, daddy” and he pulled my
arms and showed me the picture frame whilst looking straight into
my eyes, he said “ mummy, daddy” as he pointed at our pictures. I
just began crying because my wish had always been that the more I
mention the names, the more it will occur to them that it was okay to
actually use words. All the time when I was mentioning the names
out to them, they paid and showed very little attention so I wasn’t
even sure that I was getting through to them but his words that
day, lit up my life and that was the “hope” that I needed to boost
me.
I dwelled on that tiny hope and began building on it every minute of
the day and the feeling of hope is tremendous because it really
makes life worth fighting for. I once read a book about the memoir
of a father on his autistic son ( Running with Walker) and could not
imagine the magnitude of hope that the father had for his son. Even
when everyone had told him that there was no “hope” in Walker ever
being able to access any form of formal education and was labelled
“retarded”, Robert, Walker’s father did not lose hope but instead he
celebrated Walker every day of his life. What little hope Robert
celebrated about Walker is what most people will consider to be a
disappointment in a child’s developmental milestone. Robert and his
wife (Ellen) did not see any disappointment in Walker because their
ideology did not permit any negative thinking. In one of his phrases
he said “we knew that keeping hope aloft was a very tricky business
and not for the faint of heart”. That is what hope really is; once you
have hope in your child, you have to be strong and keep hope alight
because it is “hope” that can only see you through this journey with
as much happiness that can truly be imagined. Hope can only become
brighter and increased over years with a lot of strength, supported
learning and dedication to a cause that only you can truly believe in.
Hope is not for the weak mindedness. I have learned to accept- even
expect- the electric shocks of disappointment as the necessary
consequence of keeping hope aloft.
We will talk more about aiding and supporting communication during
the course of our meeting but I needed to mention that little
episode whilst talking about hope because it just shows you how a
tiny light can be the only sign anyone needs to carry on. That tiny
hope is what has now developed to a great success and I now
celebrate today as a huge accomplishment from both boys. You too
can begin to share your own amazing stories to anyone who dares to
ask you autism is a barrier to living a fulfilled life. We need to
embrace hope and begin to challenge our children abilities and
teaching them life skills as well as rules of the world. This brings me
to my next question. Does anyone think that we need to follow rules
of the world to be able to live as part of the society? How do
children with autism view rules of the world and how can we as
parents support them to understand some of these rules.