Keep. It. Simple. Please

Earlier this week, our cheer-leading squad (aka family support gang!) sat down to develop a 4-yr old Kinder Inclusion Support Programme ('KISP' - and probably only one of the endless acronyms we will encounter along the way!).

One thing that I am pleasantly surprised about is the amount of support that is available for special needs children in the regional areas. I am sure there will be hurdles down the line, but it has been quite a positive stress-free experience to date. Now ... 'stress-free' that simply has to be a bonus. Believe me, I'm more than capable of finding other things to stress over !

Like, education .... KISP did not stand for 'Keep. It. Simple. Please' !

I have always worked hard to be well-educated. It never really came easily but I persisted, and if nothing else it opened doors and allowed me a vast choice of opportunities. I wonder whether it is because of this I struggle with the term 'intellectual disability'. I wholeheartedly accept my son's developmental delay and understand that at such a young age the two would be treated as one and the same, so why is this term so hard to swallow? I accept others as they are and I would describe myself as a compassionate person; yet here I am talking about my son's abilities and all of a sudden feeling very hypocritical.

I just don't know where we fit; and to be truthful never before felt we needed to 'fit'. Funny how a pigeon-hole all of a sudden now offers so much security!

High-functioning autism is soo very confusing. The only thing predictable is the unpredictability and that's part of the whole problem.

We all want what is best for our children, and I'm still caught between whether it is better to combine Liam's needs with 4-yr old Kindergarten, child-care and the various supports offered, or perhaps go for a more routinely consistent approach in attending special school. Liam turns 5 early next year, and all I do know is that he would struggle with mainstream school even if the support was available.

As long as we keep our feet firmly planted, talk it out and have the little dude's best interests at heart, I unresolving know we'll be in the right spot. I have to believe that.

Guitar Afternoon

Today was quite a momentous day ... Liam's first kindergarten photos, first outing on-masse with his class, and a first bus ride. We set off in the drizzling rain, spirits not dampened to go to a nearby farm and help plant a reserve of native trees. Quite frankly, I had an impending sense of doom when I realised I had neglected to inform Liam that we had to go to the kindergarten first to catch the bus to the farm. Do you think I could get him out of the car?! Thinking quickly, I suggested we ask the teacher for directions on how to get to there. Hurdle #1 cleared. Ten seconds to meltdown averted.

Mind you, it had also been arranged to have class photos taken prior to hopping on the bus, but ..... (yes) I had also neglected to inform Liam that this was on the cards and no manner of coercing could get him to join in. The day appeared to start to crumble before me ... until I checked myself and realised this was Liam's day and he was only waiting as patiently as possible for his farm outing to begin.

Did we enjoy ourselves getting wet and muddy in the grotty rain, while digging holes with toy spades and squishing in lots of little saplings ? You betcha!

Trees planted by Mum: The creaking back says lots.

Trees planted by Liam: up for debate

...... but mum was more than happy to be serenaded by a happy and laughing little boy content with air-guitaring his spade. After all the world is a stage.... and mum simply hasn't got her act together yet!

It's Unconditional

It was quite a number of weeks after Liam's diagnosis, when I sat down suddenly in a unusually quiet house and felt the full weight of what had eventuated on my shoulders. I'd devoured as much information as I felt I could possibly retain - felt encouraged, dismayed by some other's notions of what autism meant, and hopeless all at the same time.

Among the pressures I placed on myself (and still do), I felt the obligation to support not only Liam, but my family and retain commitment to my employer.

I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much. (Mother Theresa)

And .... although I am far from a Mother Theresa! I feel a similar 'burden' of trust.

What in fact gives me strength is something I read on another literary blog, 'Special Needs Mama'. This site is a favourite and has brought many a smile and tear to my face; It is well worth a visit.

These (special needs) children show us how to open our hearts in ways we never
knew were possible. Perhaps that makes our hearts stronger, braver, or kinder. Or perhaps our hearts are simply, by virtue of being open, wider and more expansive. But inside this wider space we have discovered that amidst the love there is also the heartache, and within the heartache, the joy. The will to live and the will to love.
~
I'm not supposed to wonder who my son would be apart from his disabilities. I'm supposed to see him as a person with disabilities. I'm not supposed to think about who he might be or what I might love about him or how he might tell me he loves me.
But I do. I do because I love him and because he has taught me that inside a wide-open heart, loss is sometimes a part of love.

And so, I am content to remember the happiness among the frustrations and move forward, accepting that my roles of mum/ wife/ friend and colleague are now all 'Not Otherwise Specified'.

"D" for Diagnosis

I don't think we were ever surprised by the diagnosis. Somewhere instinctively, we both felt that Liam was different - a seemingly bright little boy who preferred his own company and quietly observed the world. He is our only child, and to this day I still think we listened a little too long to all the well-meaning advice about raising a child.

"It's just a maturity thing"; "Nothing wrong there, he's just a typical little lad"; "Children go through phases" - All the while, tolerating Liam's quips and quirks wondering how parenting all of a sudden got so hard and did we take a wrong turn somewhere? Or was this all a brief detour?

Our journey into autism started when we discovered Liam in his bedroom reading Beatrix Potter by himself. He was three and his reading was impeccable. I had always read to him from the day he was born, but these were books I had never unearthed from the wardrobe feeling they were too advanced for him. It bothered us that despite Liam's love and automatic recognition of words, he couldn't hold a conversation with us; didn't appear to comprehend what the string of words meant and looked very blank (although brow creased in serious thoughtfulness) when asked Why? What? and Where?

And so, it was off to Speech therapy and the ball (gathering no moss) rolled on from there .....