The hardest part


I haven't written or shared much about Liam lately, because as he grows older, our lives become infinitely harder and more complicated. It's not so easy to put into words every achievement/setback these days, because so much of the problem now is mental and behavioural. It's not as simple as announcing that he's finally started walking, or he can finally go down a slide. Now, there are layers and layers of complexity. Every step forward is inevitably followed by two steps back. For every moment of joy there are a hundred moments of frustration and sadness. It's not so easy to share the precise nature of how challenging everyday is, how frustrating and exhausting, and often it's so much easier not to say anything at all, or to reply with a standard 'he's fine', whenever anyone asks how he's doing. There's a conflict within me with wanting people to understand the nature of his disorder without sounding like I'm complaining or being ungrateful for my life, and needing support from people who won't be dismissive or saying things like 'at least he's...' or 'he'll get there eventually', or 'but look how much he's grown!'

And so I've stopped talking about him altogether. I've become an expert at changing the subject or just nodding whenever someone says something that I know is meant to be comforting but really only diminishes the magnitude of what we face everyday.

But today, I thought I'd try.

Last week Liam fell down a flight of steps, because his legs suddenly gave way and had no strength. I now carry him up and down two flights of steps everyday because he doesn't want to walk them anymore and even though my arm is screaming by the time I get to the top, I know I'll keep doing it until we find a new place to move to without stairs, or with lift access.

We are looking into wheelchair options for him because even though he can walk, he cannot walk long distances without being in pain, leaving him crying all night. He's getting too big for his stroller and even though my son is not physically disabled, a wheelchair is our only other option for when he gets bigger because his muscles will never be magically stronger or able to keep him up and running for hours.

I cannot go anywhere with both boys on my own, because Liam needs my attention 100% of the time. He is easily distracted, he will run after anything that catches his eye in a second, he does not understand 'wait', he will scream and throw a fit if you try to hold his hand, and we still need to squeeze his 15kg body into a shopping trolley seat to do any shopping because otherwise we'd just be running after him.

He is nearly five years old and still in nappies. We get government support for nappies now because he qualifies for them due to his mental disability and inability to understand his body function or control them. People tell us how lucky we are to have that support. They don't understand what it's meant for us to have to change his nappies everyday for nearly five years now, and what it will mean for the unforeseeable future.

He can speak simple sentences and say simple words. But his responses to things might not actually be what he means. He could be repeating something someone else said, or say something out of an obsessive response. He also likes to say the 'opposite' thing. So when people tell us we're lucky that he's starting to speak, they don't realise how immensely frustrating it is communicating with someone who can only give you pieces of a puzzle with you trying to complete the rest of the picture on your own with absolutely no guidance. Communicating with Liam is like having a blank piece of paper with a few random lines and squiggles on them and being expected to know what the picture is.

Liam goes to a special school where our current goals are to have him learn to put on a sweater by himself, have him brush his teeth without resistance, eat using a fork and spoon, and focus on doing tasks for more than two minutes at a time, because that is his current limit. We have been working on these goals for four months. If he manages to do this, it will be a success, and we'll move on to further goals. How long this will take is anyone's guess. But he enjoys his time there, and that's all I can ask for at the moment.

This is the tip of the iceberg of life with Liam, of life with a child with special needs. It is tough. It is complicated. I am in tears of frustration or anger or sadness every other day, almost as quickly as I rejoice in a smile or a spontaneous hug from him, or when I ask him who he likes at kindy and he replies with the name of a child who's actually in his class, instead of answering in gibberish.

Writing this feels disloyal. It feels like I'm asking for sympathy, or that I'm resenting or not loving my child enough, because I should be grateful, grateful, grateful, everyday. Because he was given to me. Because I'm apparently strong enough to handle this. Because a special boy needs special parents.

But most days I don't feel special. Most days, apart from trying to build a life for myself in a place where I still feel like such a stranger, I'm a lonely, exhausted mother who does not have a clue how to raise a child who needs so much all the time, when she has nothing left to give.

And amidst the cute pictures and funny anecdotes and trying to paint a positive picture of my life not because I want to impress anyone but because I desperately need to hold on to something good for myself, that's my reality.

And today, I wanted to be real.

Comments

  1. I hear you...... and I offer you a virtual hug.

    ReplyDelete
  2. I think what you do is extraordinary.

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    Replies
    1. Sorry I only saw this comment now! Thank you so much for your kind words.

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