Acceptance

Acceptance is like a gigantic onion – it is a layered endeavour that never fails to make me cry; firstly from sheer frustration and then from utter relief. Today, I am somewhere in between the two…

Disclaimer: firstly, let me say with unequivocal surety – I do not wish that my son didn’t have Down syndrome. I don’t want to change him. I love him so fiercely it feels like a suit of unbreakable armour. For him I would run headlong into a speeding train. Malakai is a delightful, loving and clever little boy who is also unbelievably kind and insightful.

What they don’t tell you about parenting a child with special needs – and what I didn't fully realise until recently (say... this morning) – was that there will be layer-upon-layer of acceptance. And I’m all for acceptance, because seriously, who wants to mope around forever wishing things were different? Not me.

The rub of course is that acceptance is seldom easy, and never pretty – well at least not in my world. And just when I think I've crossed one bridge and all is well, another bridge pops up. The key to remember is that these are bridges and they are designed for safe crossing. I will get to the other side. Luckily I'm not talking about massive, gaping, dark chasms (although sometimes it may feel like that).

We accepted Malakai’s diagnosis at birth quite easily I think, and his first two years were like a honeymoon. I relished in being Malakai’s mom. It was beautiful. Then along came Baby #2. Harlan brought with him not only nine months of colic and screaming, but he also brought with him everything that Malakai was not… I was suddenly faced with day-to-day examples of how my first son was not actually typically developing (duh... I know... it's hard to explain). That was a tough one. Acceptance Round #2 took about a year and a bought of Post-Natal-Depression. It wasn’t pretty, and I said and did a few things I am not particularly proud of today. But nonetheless, it is done and dusted – water under the bridge (see my clever use of analogy here?)

After another two years I am now facing Acceptance Round #3…

What I particularly love about being a parent is teaching my children what I think is the most important lesson for any human being – that their needs are important, but they are no more important than anyone else’s needs. This manifests itself in good manners, sharing and thinking of other’s feelings. My sons do all those things very well and it makes me so proud.

What Malakai doesn’t do though is listen… If he gets something into his mind, that’s it. He cannot let go of that impulse or thought. The result? A child that runs away when we’d like him to sit still; a child that sticks his tongue out at his teacher because he doesn’t actually want to go to school; a child that refuses to eat something he doesn’t like even if he is literally starving (and I mean literally).

For me, a child that listens is a well-behaved child and a child who doesn’t listen is a naughty child. Simple. Getting a child to learn to listen is process that takes a lot of reinforcement, setting boundaries and enforcing consequences when these boundaries are overstepped.

I have been diligently teaching my sons to listen, and in my mind up until now they were just two toddlers. This has all changed though now that Harlan has finally started to listen (at 3.5 years), and I have once again realised that Malakai is different. At almost five years old, he still doesn’t listen. I may as well be speaking Greek for all he cares.

This morning’s school drop was particularly difficult – not because it was any more hectic than usual. Begging Malakai to sit in his class and not follow me out, pleading with him to remember that he’s going to enjoy his day, and sternly admonishing him over screaming at his teacher because he wants to get out of the classroom almost the minute he enters it… all par for the course. But this morning was different because while I was begging and pleading with Malakai, another little boy in his class laughed at the spectacle. He laughed at Malakai. Of course, the other little five year olds come into their classroom, sit down and entertain themselves until the school day starts. That’s what typical five year olds do. Malakai’s difference hit me like a slap to the face. My son is different. I cannot expect him to behave like the other children. I can hope, of course, but I cannot expect…

And so, I now need to work on Round #3… Accepting that Malakai will behave differently. He won’t listen and hasn’t yet learned at five years of age how to control his impulses. I cannot expect him to be different from who he is, and this is simply a manifestation of his diagnosis. By expecting him to be different, I make him less-than. I make him bad. And he isn’t bad. He is a delightful little boy who has an extra copy of chromosome 21 – this makes him different in the way he develops and behaves.

So now what? My boy is different and it cannot be hidden behind being a baby or a toddler any longer. His peers see right through him to what makes him different from them. He sticks out. He is funny to them. How do I take my son’s hand and guide him through this new phase (the phase where everyone else moves forward and he stays behind for an indefinite period)? Do we stick with mainstream schooling because he deserves a life amoung other little boys and girls, he is worthy despite being different, or is this the time to move him to a 'special setting' where he will be surrounded by other differently-abled children? I simply don’t know yet.

First things first though – Acceptance. From there, all things are possible.

BY Loren Stow