a differnt story

ddd

A DIFFERENT STORY

 

29th Feb 2016

 

Today marks the long-awaited first anniversary since my son you came into my life, and its just so wonderful a day to look back on the journey we had since I frantically became a new excited parent tonight 4 years ago, not without a stomach full of butterflies. It was on that late night when I first hold the tiny you in my hands and see your smile for the first time, that I know that my life was going to change for the better from then on..

 

So much changed, yet everything remained the same, especially for my passion as a parent to you.

 

As the night falls, its as per the usual routine to read you a story book and pat you to bed, and that been what I have been doing faithfully every night for the past 4 years, except on the days when I was completely depleted and crashed to bed before you. 

 

Looking at your little face right now as you fall asleep under the dim lights, and stop to observe those long lashes, I can only come to a conclusion that you are no longer a baby, and just how much you have grown since that first time I hold the tiny you in my arms.

 

Those fond memories place an eagest smile on my face

 

I clearly remember those initial days when I was sleepless over your choice of a different sleeping posture, and how I often woke up in the middle of the night trying to turn you over on your back worrying that you may suffocate otherwise.. but you often turn back face down and continue your sleep without any issues, and I ended those few months with a total lack of sleep..

 

where did all that time go?

 

I remember very clearly that moment when I see you for the very first time as you come out of the taxi, the first thing that captivated me was that mesmerising pair of big sparkling eyes - way more adorable a baby I could have ever hoped for, although I did noticed a greater difference in this transracial adoption than what I understood previously through the phone call. 

 

As I now turn off the lamp and lay down on my bed, my mind becomes more vivid about the unique journey we have been so far, and the scenes of our many (mis)adventures came to my mind, and that place a smile on my face.

 

Oh I remember the day at the family court when I was intimidated by the Indian senior judge with a unsmiling expression, demanding from me an explanation on how me, as a single parent, is going to rise a child of a different race alone.. but upon seeing how you as a little baby reaches out to me and calling me papa right in front of her, she was satisfied with the “answer" she was seeking and gave us the formal approval to the adoption order right on the spot.

 

I do remember the day I look so awkwardly different when I realised I am the only guy parent in the group of 48 mummies attending a private parenting workshop behind Paragon mall, and at the end of the session you were merrily clapping and making so much noise that everyone laughed, and I was flushed.

 

I also remember that night when we were having dinner at a cafe in Cameron Highlands, and you were crying so loud and inconsolably  that the passing-by local police came up to us to insist for a proof that I am indeed your legal guidance. We must have looked too different in their eyes and sparked their concerns

 

and.. when we were in the local supermarket and you were walking merrily just a few steps ahead of me, when a supposedly helpful lady suddenly just walked up to you to grab your hands and led you around to seek for your parents, only to be embarrassed and apologised to me when you ran back to me calling me Papa. 

 

But all these are just but frivolous nothings good for a laugh, and the decision to start work once again after you turned 3 years old went on as planned  for a while. However it was not until we met up with another type of a major difference that I have to drastically alter my plans I have for us. 

 

I remember that early morning, just the first day into the third week after you started nursery, my heart skipped a beat when I got a call from the school principle - she politely explained to me that she observed you having an impaired ability to communicate with others in the class, and had difficulties relating to other kids socially. Well nothing that I wasn’t already aware of, but yet I couldn’t help but heave a sigh to be constantly reminded just how different my son is from other kids. 

 

I reckoned there was a need for me to put all my future plans aside and get you started on the long screening process for Autism Spectrum Disorder, and to execute a new fixed routine bringing you for various workshops and therapy sessions, and run a new time-table doing structured play that incorporates lots of physical activities at home.

 

Its not that I am in a rush to put a label on my son, but as a parent I felt there is a need to know my son completely, so as to be able to love him in the best possible and most special way I possibly could.

 

Although I’m aware that autism, like most permanent medical conditions, is life-changing; but there wasn’t really any sense of bewilderment, shocked or disappointment at the outcome of the diagnosis of ASD, because  as a parent I firmly feel that every one in this world have some degree of “Autism”, and that each child should be allowed to be “different” from the rest as its diversity that makes this world interesting; But I also agree that early intervention is important for any child diagnosed with Autism as it will help to maximise the child’s ability and influence positive learning outcomes in their early years

 

Yet, I was definitely overwhelmed having to navigate through the tons of options in seeking for professional assistance without knowing which one suits you the best (there is just not a single solution that works for everyone), and at the same time feeling depleted having to to do the same routine/exercise over and over again when you may not be cooperative all the time. 

 

Its also true that there is a accuse sense of helplessness to be alone on this journey facing a lot of unknowns, having to face a number of specific challenges including finding appropriate childcare, scheduling conflicts related to therapy and specialist appointments, and fulfilling the non-standard emotional needs of my son by myself.

 

But I know I need to do this well and make this work - since I am the one who brought you home, and the one who knows you the best..  I will have to be the one responsible for your development.. and for that, I promise to give you all the time you need from me to execute a broader early intervention plan and provide a personal guidance to you from now.

 

Since the intervention at ages 3-7 is crucial to help a special needs child to grow into more confident and functioning adult, I came to a decision that I have but to stop work and continue being a full-time stay-at-home parent again, so that I can give my full commitment and involvement

 

There are a lot of unknowns lining up for me but I guess we can only take a step at one time. 

 

At around 4 years old, we have been through a number therapy sessions and parental workshops together, and there was an welcomed steeper learning curve during this period. Then, we counted on many milestones and experience many little miracles - A prolonged eye contact and appropriate respond to my facial expression, a full request that was verbalised, improved his selection of the food patellate, learned to remove his shoes, putting the toys away correctly, a successful trip to the bathroom on his own, and learning to wish me good night the non-echolalia way etc. These may be little things but these progress meant so much to an Autism parent.

 

However, so much for learning new skills sets through therapy sessions, I personally believe there is also a great need to strengthen your confidence and give you more exposure to the outside world, with more random interactions with people outside your standard routine, and have a bigger space around nature for you to run around freely to enjoy some unstructured free play too (at the same time reduce time spent on technology) - and therefore between our hospital appointments, i decided to take some time off from our standard rigid routine to bring you out for some oversea trips, initially to some villages at quaint countrysides where you get to chase after the free roaming farm animals in open lands under more accommodating weather conditions, and having longer period of interaction with a big group of kids each day.

 

Well its certainly not easy to bring a small kid out on a road trip on my own, especially when at over 3 years old you start to have your own temperament and not being cooperative all the time; but its true that I observed a lot of positive developments after we came back from that two-months stay at rural china; Instead of being overloaded by your sensory back home, you get a full workout running around for the entire day and all your energy was but exhausted by the end of each day; and that led to better appetite and improved sleep quality (for both of us!). You also appeared to be less wary at approaching strangers, more aware of your surroundings and spoken more words (even better Mandarin), and what with the improved stamina and better endurance and an enhanced sense of independence from those outdoor physical activities. I find that advancement remarkable and thereby concluded that physical activities can really be a useful adjunct to traditional behavioural and speech interventions.

 

These trips are also very important for myself as a relief break from the vigrously repetitive routine too

 

(Read : 28 reasons to go traveling with a special needs kid)

 

And since I am being a full-time stay-at-home parent now, and the only thing I can afford for you is my time with you, therefore I decided to bring you along for a few more overseas trips and started this website to contain all the memories collected along the way. At the same time, I thought it will be more purposeful if we can create more awareness about Autism everywhere we go, and so I started the "OK to be Different” project, alongside with “Autism Travels”, a DIY travel guide for families bringing their special needs kids for holidays abroad.

 

And maybe we can start an online store on this website selling all kinds of a Alphabet sets (which you are so passionate about) and educational toys great for all kids. This will provide you with a option in the future should the mainstream education didn’t work out for you in time to come. 

 

Well, now laying on my bed and reflecting on the work done as a new parent for the past 4 years, its certainly been not easy, more so to do it on my own.. But it still requires a lot more commitment and perseverance from me for a long while to come. Although the road ahead may still be long with a lot of unknowns, but don’t worry my son, I will walk alongside with you all the way to wherever you want to go.

 

.. its true I wouldn’t want it any other way.

 

Yes, as you grow up you will realise that life can be hard to comprehend at times and not everything will go as we wished for.. but don’t take life too seriously : all you need to do is to promise me that you will just be you, and love yourself for who you are, no matter how different you are from people around you..

 

.. because like I always repeated, its perfectly ok to be different :)

 

Well my son, this world is really bigger beyond what we know, and way more wonderful than we imagined it to be.. and to thank you for making me so much better and more humble a person (after becoming a parent of Autism), do come along with me and let me show you all the great things this world has to offer to us! 

 

Let’s get out there to play as much as we want, eat as much as we can, and laugh to our heart’s content.. and of course to collect a big chest fill up with nothing but fond memories.

 

This has been a special journey for me, one that only a small group of extraordinary brave parents have gone before.. It does look like a scary and lonesome path at first.. but with you by my side, it doesn’t matter where we go.. and we probably reach a special destination of our own.. 

 

And of course, it will be a story thats uniquely ours to tell..

 

One that is filled up with gratitude, grace, hope and lots of love;  because of you being around..

 

.. and yes.. thanks for sharing your sweet and beautiful smile

 

 

 

 

ddd