Being a parent of a child with special needs is many things, but dull it
isn’t. Well at least not for me! I am constantly having mini-awakenings – small
aha moments as the meaning of my child’s diagnosis unfolds a little more day by
day.
One such unfolding occurred
this morning when I realised that while we have spent Malakai’s life so far
doing everything we can to afford him a ‘typical’ development and will we will
continue to do so, the opposite of this is also coming into play now. Like a
yin and yang or push and pull, I have realised that there are some things we
simply cannot improve on.
We can (and have)
helped Malakai to develop in amazing ways – and I believe this is because I
have never placed a ceiling on what he’s capable of. I have never thought he
was incapable of something simply because of his Down syndrome.
But – and this is a
new but… I have realised that there are some things we simply cannot push him
to be or do. There are some things we simply have to accept. And I know I am
sounding rather cryptic here, so let me give an example.
Walking into school…
Something that most
kids just do. Maybe a tear or two, even a bit of minor manipulation. I know
because I’ve been there with Harlan. But eventually your kid just walks into
school right? Well not if they’re Malakai.
He simply refuses to
walk into school like the rest of the kids. He cries, screams, performs and is
genuinely and desperately unhappy by walking into school. And together with his
teachers we tried everything – nothing short of a welcoming party! The only
thing that was missing was a marching band and streamers… And yet? Not having
it.
Last week after a
particularly difficult drop off where Malakai even tried to bite me I stumbled
back to my car after he’d been dragged off into school and I wept. Big hot tears
streamed down my cheeks. I just couldn’t believe that after all we had been
through with Malakai, after all his hard work and our immigration to another
hemisphere, it could all fall down on walking
into school. Seriously? It would be this that would undo us?
Then it dawned on me
– step back and take the pressure off. Think of another way – walk him to his
desk myself. Give it a bash because really, it couldn’t get much worse… And it
worked. He goes in happily now when I take him. Problem solved right? Yes! But
this is what I mean about a yin and yang – not accepting and accepting. It’s a
fine line and a funky dance…
I realised today that
there are just some ways that Malakai is different. He will never be the same
as other kids. And nothing we do can change that. We need to accept that and
meet him where he is.
The challenge is
deciding when to accept and when to push him to achieve more, do more and be
more… that’s an aha moment for another day obviously.
