Elusive patience

One of the early interventionists who worked with Oscar way back when said to us, “kids without problems teach their parents, kids with special needs need to be taught by their parents”. And that is life with a special needs kid in a nutshell.

Your kid starts to roll, tripod sit, pull to standing, cruise furniture, walk, babble, talk in one then two then three word phrases. Your kid starts to pick up pens and pencils and draw on walls, doors and eventually paper. Soon they start trying to draw themselves and you, then the world around them, then letters, then their name, then sentences. Somewhere in there they start to recognise words which acts as the catalyst for starting to learn how to read which granted, takes a fair whack of input from parents, but you get my drift.

We have never had any of that.

And now I have a nine year old kid with special needs who still needs to be shown how to fill in his time. And if the activity isn’t provided and then guided, he just sits there with this lost look about his whole being that makes me feel like my heart is going to stop beating from the grief and love and frustration and exasperation and indeed anger all rolled into one.

To be honest, after nine years of it, it drives me absolutely mental. It drives Chef to boiling point and Felix to such burning frustration. Because Felix, at 7, can amuse himself. He’ll go and play with his lego or his Thunderbirds stuff. He’ll read (yay!), he’ll get a footy and go and kick it around outside. He’ll go and jump on the trampoline or create a whole world in the sandpit. And we’ll be in bits of it but really, he just works it out.

So my weekend exists of “what’s up next mumma?” over and over and over again. It’s broken up with a few “ogga eat”s and “my go”s and what not, but otherwise it’s just a child wandering aimlessly, sometimes whimpering and otherwise needing constant input and stimulation and direction.

And it is driving me fucking insane.