BEAUTIFUL IS AS BEAUTIFUL DOES

Tonight we had a roast chicken for dinner.  We sat down like a lot of other families across Australia and quibbled over who got what to drink and how many mouthfuls they had to have until they were finished.   Jack, the three year old,  wanted chicken with a handle (a chicken drumstick) and Maddison, nearly eleven, gagged on the peas we always force her to eat.  Meanwhile Sam sat and ate his dinner and enquired as to which one of us cooked the dinner tonight.  When Phil told him it was him, he replied "Thanks Dad, you're a really good cook!"

I guess this appears mundane to those reading right now and to be honest, it is.  It happens most nights and apart from the conversation topic, the scenario remains the same.  We are an everyday family with a child who has a disability.  Who has a condition.  Who has a label.  Aspergers.  High functioning Autism.

Why is it then, until someone reminds me, I kind of forget we as a family live with this?  I rarely blog about it and feel no need because honestly, it's our normal.

That's not to say Sam doesn't display the classic signs and traits.  He does.  He won't wear a shirt with buttons.  He loses the plot if one, tiny piece of Lego is removed from his bench.  He hordes nearly every piece of paper or treasure he has, at the foot of his bed.   He is obsessed with Tom and Jerry.  He craves shows like Myth Busters and Top Gear.  He will ask you for something he wants (like say a Milo) continuously until  he gets it, even though all kinds of early bedtime based threats are rained down upon him.  He needs to do his homework as soon as possible on returning home of an afternoon.  He may see a simple word one day and not have a clue what it is the next.  He is still incredibly small for an eight year old.   He has morphed facial features.  He rarely looks me in the eye.  He will let you kiss him, but he will wipe it off.  It's nothing personal, he just can't handle it.  Increasingly he spends time alone, independently, watching his shows or on the swing listening to his ipod, in particular to John Farnham.

On the flipside, he is very sensitive.  He has a wicked sense of humour, loves a rumble with his father and enjoys farting on his sisters face when the opportunity arises.  He blows me away and uses words like gargantuan and problematic in context and pulls out one liners that have Phil and I in stitches.  I have some of his best quotes here.   He is well behaved and I am constantly told by his teachers that his in class behaviour is impeccable.   He is very literal and we have to be careful how we direct him and what we discuss sometimes.  He is loving yet lately, I find myself losing him a little to a place I can't reach him.  And just quietly, that both scares the shit out of me and breaks my heart.

Increasingly of late, I have come across what seems to be a phenomenal amount of parents who are either going through the diagnosis process or have a sneaking suspicion they need to have their child assessed.  Like us, they had a feeling something just wasn't quite right. The thing with Aspergers though, is that often no two children are alike.  And this makes it difficult to compare "stories" for want of a better word.

Sam is lucky enough to attend a school that has a fantastic special education unit.  He attends main stream school, yet has great support from specially trained teachers and teacher aides in the classroom. 

If I could offer one piece of advice for parents starting the process, it would be to remember that at all times your child is still exactly the same one you had the day before you received the name for the condition.  And after you've had time to digest the information, know that it simply a tool to help you assist your child in the best way possible.   And don't take it personally.

And that's where I'm at.    I know it can appear these kids are being disobedient.  I know I have family members who believe Sam is the way Sam is because of something Phil and I did wrong in his toddler years.   Ignorance is what it is, I can only try and explain and educate.  Whether people listen is entirely up to them. 

I also found that Phil and I had to get over ourselves.  We had to realise it wasn't about us and Phil especially had to believe the diagnosis.  We had to come to terms with the fact that Sam may struggle both socially and academically his whole life.  He may or may not find a mate in life.  He might struggle to find a job.  He may never live independent of us.   I know how scary these thoughts are as a parent, but am also amazed at the massive support network out there.

Sam, like all three of our children, will be guided, aided and offered as much opportunity as we can avail to him.  But that's where it gets tricky for us parents.  The rest is ultimately up to him.