(from the manuscript
in preparation “Beyond the Puffy Eyes”)
It took me 4 years to not cry on his birthday, there was
just so much to work through. And what I had to work through, apart from learning
what Keith needs developmentally, is really to come to a place where I am no
longer fearful of the unknown. No longer fearful of being in a position where
tomorrow seems bleak to almost everyone around me, and to admit that to myself
especially, and yet be able to crawl and climb myself to a vantage point of
possibility, and from whatever inner reserve I can muster, turn that
possibility into a vision and then while exhausted, learn to squeeze out
another inner reserve within the inner reserve to work tirelessly to turn that
vision into reality. We come to roadblocks with special needs children every
day (Keith took 2.5 years of physio therapy to walk and at 4 years old he has
undergone 3.5 years of speech therapy, yet he still struggles to say with
clarity “Mommy”) and truly – we come to points, lasting months, even years,
where we don’t see the obvious path and or even any light at the end of the
tunnel!
Some people encounter such roadblocks or are so close to
such pits of despair maybe once or twice dramatically in their lives. A special
needs child, and the family, encounter this as one dramatic event, and then a
lifetime of daily reminders of this dramatic event. Many run (especially the
parents), some stay but stagnate in pain, some build a fortress of bitterness,
some build a fortress of bliss, some fall headlong into the pits and spiral
into total helplessness; many just give up with a self-determinedly clear
conscience that this is “as good as it gets” for these “special” children
(typically unknowingly bearing an underlying attitude that special
children are a different class of lesser than human beings). There is another
way – of adventure and opportunity for growth and discoveries.
It is how we respond to the dramatic event that determines
whether it is a negative or a positive event, or indeed continues to remain a
negative or a positive event. This makes or breaks the quality of life for the
special child and the families, as a special needs child is a life-changing and
a lifelong event.
And then, eureka – something clicks: To walk this journey,
I’ve learnt to turn on and shine the light exactly where we are, and for as
long as we need to be there, and to not be afraid of the bittersweet of life,
and to do the necessary work and cultivate the reserve within the many layers
of inner reserves in order to distil the nectar for the next step. I realise
now, what a lovely blessing that is. Because every day is unchartered. Every
day is an adventure. Every day I must not just be satisfied with not easily
discouraged but to be downright courageous, and wake up every morning with an audacious resolute to hold the unquestioningly
positive vision for my child and to do the necessary work tirelessly and with
abundant joy in order to translate the vision into reality. And to be brave
enough to let go, modify and renew my vision of yesterday on a daily basis, i.e.
to walk on the edge, where it is a journey of no known roadmaps, and each step
determining the structure of the next. And each step, a leap – of faith.
Special parents don’t have the luxury of time for experts to
figure for our children what is the best practice or what is the latest
research or what is a prescribed paradigm or programme as we lose one
generation of experience and knowledge-building if we adopt the wait till I
figure out what-is-the-answer approach. Policyholders, medical professionals,
developmental experts and pedagogists may be able to adopt the wait-and-see
approach in order to better study their policies and/or research, but for
parents, that so-called one generation of missed possibility is our child. So
as parents, we have to jump in for our children and BE the research material,
BE the so-called experiment that no one dares to undertake, and BE the ones
that fall and get criticised, BE the ones that pick ourselves up and get
documented by the so-called authorities as a positive data point in research.
But to us, this is our lives. We are living it. It is choosing between a life
of joy or despair for us – we cannot wait for the “perfect” answer. We cannot
wait for the so-called bell curve and then be told we are the outliers – that
researchers can’t even chart us on the bell curve. That’s how in the extremes
we are. Children with Down syndrome are multiply, multiply challenged in every
way you want to choose to see it. And multiply, multiply able in every way you
want to choose to see it. Down syndrome cannot be experienced from a distance.
Every child with Down syndrome is an enigma beyond rational comprehension; when
allowed, every child with Down syndrome is a living treasure trove to
experiences and insights unimaginable.
And the approach that I stumbled upon, ironically, is the
one right before our eyes. Our child. The approach is simply to be led by the
child. To not be afraid to be led by the child. And to truly walk WITH the
child.
If each of the special child, family and member of society
can experience this and learn to keep walking where there are no guarantees and
to allow our children – special or typically developing – to lead us into
adventure – it’s the best gift or “skill” or “tool” that we can receive,
cultivate and impart for anyone. It is a journey of no longer needing known
roadmaps, because – we have arrived. To be with our child.
I am truly learning to walk this journey as a daily
celebration and it is hearts and good souls such as family, friends and
colleagues who jump in and walk with us to shine the light on us when we are
weary, that keep us going and growing. It is not a journey of burden or help or
a society problem to be resolved. It is just simply a very unusual walk on the
edge of extremes and discoveries, truly off the beaten path – of daring, of
camaraderie, of failings, of forgiveness, of u-turns, of discoveries, and of
love. Not love as a notional concept, but a walk of joyful work spurred by
unconditional love. And until we get on our hands and knees to truly BE PRESENT
with and for a special child, we haven’t even begun this walk yet.
Special needs children can accomplish many, many levels of
growth beyond what we can imagine and along with it, everyone who walks with
them and through that, transform the quality of society and humanity that
believes and supports this possibility. However, the early steps are beyond
difficult, and that is where we need those with the greatest and heartiest
strength and love to carry the special children and the families, and to just
jump in and be with us- to hold our hands as we figure where we are, to
shine on the light where we first land in a place of seeming darkness, and then
to scoop or boot us to take the first real step into the wildest adventure
anyone can imagine, to be a parent – on our hands and knees with our children.
No need for great elaborations of grand plans or solutions, just be with us.
The grand vision cannot be a reality, until we undertake the full resolve to
commit to actions. With all that you are – head, heart, soul – take the plunge
with us – jump in. Remember, the destination is already right in front of us –
the child.
We need you to live at the edge of extremes, with us.
Peng-Ean Khoo
for Keith Cham, a child like any other child
Sept 18, 2011
“Walk with me and be my friend.” – anon
Moonriver Lodge 