Autism Parenting: The End Of An Era

2012-09-24 23.02.15

Three nights ago, I made the excruciating decision to kick my children out of bed. My bed, that is.

To give a bit of background, my kids have always had full and free access to me, at any time of the day or night. When they have woken up in the middle of the night having had a bad dream, or feeling sick or lonely, they have been allowed to get into bed with me and snuggle up. It’s not always comfortable, being squished on both sides by children, but I have always loved it. Because what is better than hugs from your children?

As much as I love it, though, there are downsides. For one thing, my children take up an inordinate amount of space in the bed for such small people. It’s like they morph into starfish at night, and there are arms and legs everywhere, squashing my face and poking into my spine. For another thing, these little people are getting less little. George, who is ten, has reached the same height as my mother-in-law (OK, so she’s a little old lady, but still), and eight-year-old James is getting there as well.

What this means is that these nocturnal cuddles are costing me an enormous amount of sleep, and that makes it difficult for me to both function and be a human being that other people want to be around. In addition to that, George has started showing signs of puberty, and my husband and I have been feeling the need to carve out more time with each other.

We have reluctantly agreed that it is time for the kids to stay in their own beds at night.

James has accepted this with ease, but for George it is a massive change. Kids with autism do not appreciate it when the boat is rocked, and this particular change represents a tidal wave for him. It has been difficult for him, and by extension, difficult for us.

For the first two nights, James was the only person who got any sleep. My husband and I would lie helplessly in our bed, listening to George’s plaintive pleadings. He kept wandering into our room, and I kept taking him back to his own bed. I would get him settled, tuck him in and give him a kiss, and then go back to bed. And then I would do it again. And again, and again, and again.

While all of this was going on, George was whimpering, “I want Mommy. Lie down with Mommy in the bed.” And then, as he got sadder and sadder, he was simply calling my name.

I so badly wanted to cave. I so badly wanted to go to him, lie down with him and wrap my arms around him. But I knew that I couldn’t. In order to make this change, we would have to be persistent and patient, gentle and firm. We would have to just lie in bed and listen to our child being sad.


Last night – the third night – we caught a break. George went to sleep in his own bed, and he stayed there for the whole night. There was not so much as a whimper, not the slightest bit of movement. As much as I like to think that this represented an acceptance of the changes, I am realistic enough to know that the poor child was probably just too exhausted to protest. We may be in for another few nights of sleeplessness, and we will deal with it for as long as we need to.

As parents, it is our responsibility to guide our children towards independence, and this is an important step in that direction, even if, at the end of the day, it is harder for me than it is for them.

This is an original post by Kirsten Doyle. Photo credit to the author.



To sleep, perchance to dream

On Monday night, George had one of his stay-awake-for-half-the-night nights. It happens once every two weeks or so.  He goes to sleep easily enough, aided by the melatonin we give him with his bedtime milk, but then he wakes up in the early hours of the morning – anywhere from midnight to 3:00 a.m. – and he stays awake for about three hours.  He is not upset, he does not cry.  Apart from occasional bursts of laughter (which, to be honest, are a bit creepy at four in the morning when nothing is funny), he is actually very quiet.  He is not still, though.  He gets up and wanders around, or he climbs into bed beside me and starts playing with my hair, or he sits on the end of my bed rocking back and forth.  It is a level of activity that leaves me in an uncomfortable state of consciousness: he is not active enough to force me to just get up and do something useful, and he is not still enough for me to be able to drift back to sleep.  So I lie there in bed in a state of exhaustion, trying to settle him and get him to go back to sleep.  Experience has taught me that I cannot really force this.  When he has these nights, the best thing for me to do is just lie as still as I can, ignore George as much as possible, and wait for him to go back to sleep.

As long as he sticks to his regular schedule – about once every two weeks – I can handle it.  I always feel like the undead the following day, but at least I know that I’ll be getting relatively normal sleep for the next two weeks.  This is just part of his autism that I’ve kind of learned to live with.  Autism and sleep disorders frequently go together, and I reckon that once every two weeks isn’t too bad considering what some parents have to go through.

This time he did not stick to the schedule.  Instead of waiting for two weeks, we were treated to another one of those nights after a mere two days.  On Wednesday afternoon Catherine came.  Catherine is the new respite worker, and this was the first time she was working with George.  For a first encounter, they did OK with each other, but George was definitely stressed out by this change to his day.  After Catherine left, he was prowling around with a mood that could have gone either way at a moment’s notice.  At bedtime he was narky, unsettled, and uncooperative.  We were patient: knowing that changes in his daily routine do tend to reflect on his sleeping patterns, we had kind of expected this.  George eventually settled down in my bed and went to sleep.

At about 1:00 a.m. he woke up in a mood.  He was crying, he was angry, and he was noisily rooting around in his box of alphabetic fridge magnets announcing to the world that he wanted “small letter a”.  Much to his chagrin, we removed his access to the box of fridge magnets, and with some soothing, he settled down with his dad.  To give him more space, I abandoned my spot on the bed and went to sleep on the sofa-bed.  Predictably, George followed.  When he wakes up in the middle of the night, he goes into full-on “Mommy mode”.

For three hours, he was playing with my hair, sitting up on the bed, lying down again, demanding that I scratch his back, telling me he wanted popcorn, getting up to wander around and look for his box.  I was mostly ignoring him, occasionally telling him to lie down, moving his hand away from my hair (the way he constantly plays with my hair sometimes drives me crazy, especially in the middle of the night).  I was watching the clock, and at about 3:30 a.m. I ruefully accepted that I would not be going for my planned early morning run.

George eventually fell asleep at about 4:00, and I fell asleep shortly thereafter.  I woke up just over two hours later, almost weeping with exhaustion.  Somehow I got through the day, helped no doubt by the knowledge that I would be leaving early due to a medical appointment. Throughout the day I was filled with anxiety: Catherine was coming again.  Were we in for another tumultuous night?

George and catherine had a successful session.  When Catherine left George gave her a hug; he was happy and smiling for the rest of the day.  He was contentedly playing with his box of magnets, which had been restored to him.  Although I felt pitifully tired, I went for a run (it was a good one too – I well and truly flounced my target pace).  At bedtime, George was relaxed and cooperative, and he went to sleep right away.  There was a brief moment of anxiety in the middle of the night when we heard him digging through his box.  Once more, I removed the box – this time, George went back to sleep immediately, and I spent the rest of the night in glorious oblivion.

Having had two virtually sleepless nights over the course of three days, I still feel exhausted.  Sometimes a single good night of sleep is not sufficient to wipe out the sleep deficit.  I am looking forward to another night of good slumber and a restful weekend.