Peaks and Troughs

I don’t think my heart has ever been this heavy.

But, paradoxically, I don’t think it has been as light either.

Which, I suppose, brings a kind of balance to life, doesn’t it?

Yes, we’re on autism again :)

It’s all so relatively new, and we’re wading through it, learning more each day, struggling through the hard times: the unpredictable and sudden lashings out and meltdowns; rejoicing in the good: taking Linsey’s hand and walking into nursery without a backwards glance. Grateful, oh so grateful, for people like Linsey, who understand. And friends, too, with children on the spectrum, or with other challenges, who are not only mines of information, but incredible support. These are the ones (and you know who you are) to whom you can make confessions nobody else would really know how to respond to. You can say to them “I don’t know if I’m cut out for this” and they know what you mean. They know you don’t mean “I’m about to run away, this is too much”. They know you do mean “I’m struggling. This is tough. Sometimes I just can’t get my head around it”. They know you’re not feeling sorry for yourself, but that you are full of worries: how will he be accepted by the world, what will he struggle with, how much will he be capable of, will he ever have any independence, how much has he progressed already, what can I expect for him, I don’t know I don’t know I don’t know what’s normal…?!

And then they tell you you need an SEN. And you look at them blankly. “A Statement of Educational Needs” they explain. And you nod as if you suddenly and miraculously understand. But you don’t, really. So you own up. Why? What is it for? “It’s so he can get the help he’ll need.” Oh. It will tell you how severe he is. If he gets a level this or a level that will make all the difference. You find yourself hoping he gets a levelĀ that so he can get more care, even though a level that means he’s more challenged… And you chide yourself for wishing such a thing.

They ask you to fill in a form about him. They explain that they will, too, and that when you read theirs you mustn’t be dismayed by how negative it sounds. It’s just so he can get the help he needs.

It’s a strange in-between world you’re asked to inhabit at this point. You spend your life looking at the positives, noticing the tiniest yardsticks of progress: “He just said ‘Where ‘loon gone?’! That’s a whole question!” “Did you hear that? He just said ‘Door’! He wants you to open it!”
And then there’s the other place where they want you to look at all the challenges, all the difficulties he has, all the things you spend your daily life glossing over, ignoring, attempting to improve without actually saying them out loud. You find yourself on this strange rollercoaster of believing the best whilst being asked to prove the worst.

I don’t mind telling you it’s tough.

Then you have nights like tonight, where you’re plum tuckered out with it all, and he’s just dumped two pints of water out of the bath all over the floor, and your strength is waning.

And you get him out, onto your bed to get his jim-jams on, and his chubby little arms snake around your neck. He sticks his little lips out, as he’s seen the frog do in his favourite film, and he pulls you in for little hot kiss after little hot kiss. Then he just holds you, around the neck, your cheek on his cheek, and before you know it, his breathing has become deep and even and he’s fallen asleep.

His world is exhausting.

And you dress him through his sleep, and deposit him in the strange makeshift bed on the floor (because he refuses to sleep in a real bed) and you’re on a strange and wonderful high.

Those little arms are still around my neck.

And, believe me when I say this, because it’s from the heart, suddenly I remember: I’m grateful.

Addendum: I guess, what I’m really trying to say, is that it’s all too easy to lose sight of Teddy in the sea of ‘requirements’… And Teddy, put simply, is perfect. Just as he is. :)
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About Alice

I'm a mother, I run a business, I make things out of wool, I take pictures. And I write about most of those things, on a very sporadic basis :) View all posts by Alice

2 responses to “Peaks and Troughs

  • Jennifer

    Alice – I appreciate your beautiful writing. It is so honest and real – thank you for sharing. The wisdom in your words give me strength – thank you for allowing us into your journey… I’m wishing you and your boys all the best.

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