Some days, woken at 5AM, after another night of broken sleep, you sit on the edge of the bath tub and cry, wondering how your family will survive the hardness.

No challenge or obstacle hits you as hard as the relentless sleep deprivation that renders you so defenceless.  ASD can come with accompanying sleep issues, and this has been the case with Boodi since he was 3 months old.  I never got more than 2 hours sleep straight until he was 15 months old, when he stopped night feeding after I was hospitalised for a few days due to hyperemesis in the first trimester of my pregnancy with Lady.

Things were a bit better after that, but I could count on 2 hands how many full nights sleep I have had since he was born, and I would still have fingers to spare.

So many people tried to push me into sleep school, and though I have no issue with other people doing whatever they need to do to stay sane (as I know how awful sustained sleep deprivation is), I never felt like it was right for Boodi and I.  Now that we know that he has autism, I am so glad that I followed my instincts on this issue, as Boodi has no control over it and can’t unlearn it or be “trained” to sleep better.

Our little boy goes to sleep in his own bed, and with the help of melatonin prescribed by his paediatrician, it no longer takes him an hour or two of laying in bed before he can wind down and close his eyes, but he still wakes multiple times, always goes and climbs into bed with his Dad at some point before midnight (while I sleep in the office, with Lady- this is what works right now) and then wakes while it is still dark.  Some nights he wakes and doesn’t go back to sleep for 45 minutes to three hours.  Then he still gets up at 5:30-6AM.  Al gets up with him, and I wait for Boodi to break into the office to climb into bed with me for a rowdy snuggle.  None of  us get enough sleep.

On those days when I sit on the edge of the bath and despair, or those nights where I wake in the dark while Lady stirs for a breast feed, I think about the alarmingly high divorce stats that I have read about in the parents of kids with ASD, and I think that it is the sleep deprivation that makes you and your marriage vulnerable, tender like a bruise.

So you pick yourself up, and look for some tiny thing you can do to make it better, just right now, and so you make your husband a cup of coffee, so you take solace and joy in the guileless smiles of your children, so you make heart shaped ANZAC biscuits because they are Al’s favourite, and you tell that unkind voice inside yourself to stop being so mean, to yourself and then to your love.

You think of that Paul Kelly song that you wrote down the line from, when it played in your kitchen, some time when In the Night Garden wasn’t on repeat –

I was careless,

I lost my tenderness

and you think, no, I will be tender like the caress and embrace that is needed, not like the wound that hurts to touch.  You think, we will be okay, we have to be ok, and we have the love.

Liking up with #FYBF on Friday with Grace