Tuesday, 31 March 2009

"But Mum, I CAN'T SLEEP!"

Just published last blog, looking forward to getting into nice warm bed and a few hours sleep, doing the rounds of windows and doors, unnecessary stand by lights and all the other stuff you have to close down, lock down or just plain turn off before you can go to bed when I hear Sarah descending the stairs. This is never a good thing, when she goes to bed she usually stays there unless some thing is very wrong, I'm now assuming that something is wrong.

Me.. "whats up Sarah"
Sarah.. "I can't sleep"
Me.. "Never mind, I'm coming up to bed now, you'll soon settle down"
Sarah.. "But Mum, I CAN'T SLEEP"

You have just seen the last full sentence I uttered until 7.00am this morning, a good 6 hours since I put up previous post and Sarah told me she couldn't get to sleep.

She told me she was scared of practically everything in the universe, but I'm not convinced by the sideways look I get when she tells me she is frightened by car lights on the ceiling when there are no cars passing her bedroom, the noise, when it is completely silent, (for a change!) and the shadows. I will concede that a late 50's guitar/drums combo could be a bit intimidating, but I don't think that's what she meant.

She finally went into her room, still protesting, and I went to bed. Just dropped of to sleep when awakened by the centre light going on and Sarah announcing to the world "But Mum, I CAN'T SLEEP". Since I had heard it before it didn't come as much of a surprise to me, but It was the first time for Bill and with the light coming on at the same time it must have come as a bit of a shock. Now there are three of us who are unlikely to see a full nights kip.

So Bill goes through the "What's up Sarah" routine with similar results, difference being it was in a higher pitch which was hurting the ears and the squirming about thing had started. This isn't a good sign, it's a behavior that goes back to when she was just a toddler, and just to upset any "MMR causes autism etc" people, predates any immunisation. There are certain times when you cannot touch Sarah, she hates hugs and cuddles if the time isn't right and she hasn't instigated it, she does not know how to just put up with it, a thing which most of us learn early. You must remember those awful moments as a child when some ancient and strange smelling relative wants to pick you up and slobber on your face, my personal horror was the awful tasting lipstick that seemed to linger long after the bizarrely painted face had retreated along with the bony fingers that were supposed to be tickling you. Childhood trauma leading to issues in later life? Me? No, just a long memory. So I think I know where Sarah is coming from with this squirming about thing, if you keep everything moving they can't get hold of you, and it is part of her personal autism. Every person with autism presents with different obsessions and quirks that are all their own. She is in a place that we are not going to be able to enter, and this is going to go on until something shifts in Sarah's mind to allow us in to lend her a hand to sort it out. For now, she is cutting herself off from us, but is still desperate for reassurance and a bit of company.

So the rest of the night is spent with either Bill or I sitting in her room with her until she makes it clear we should leave and then going back in with her when she comes into our bedroom demanding attention. Somewhere around 5.30am she decided she wanted to get out of the night clothes and dress for the day centre, slowly from there it started to get better. She didn't want me to get her clothes out for her, which I usually do, but fished yesterdays clothes out of the laundry basket and by 7.00am she was calm and fully dressed with no help from me or Bill, in fact Bill had taken the opportunity to get a little sleep during this lull. Still determined that she was going out she said she would like some breakfast so I figured it was time to call it a night and get myself ready for the day.

Went in to see her at 7.30am, She was laying on the bed saying she had "Had a little nap" and wanted crumpets for breakfast, looked in again at 8.00am and she was in bed fully clothed and very sleepy suggesting that maybe she would stay home today, looked in again at 8.15am and she was oblivious to the world. So waited for Sarah's transport to tell them she wouldn't be using them today, waited till 9.30am to ring day centre to explain what had happened and assure them she would be in tomorrow. Then made tea and toast for myself and check the emails, as sorting through all that SPAM is somehow relaxing after the night we have just had and thought while it is fresh in the mind I should put in in the blog.

10.30am and Bill gets up so I make him some breakfast and tea, more tea for me, and now fully clothed I am going back upstairs to bed. Will check this blog out later before I post it. Spelling is not my strongest point and the apostrophes will be a disaster if I check them or not.

It is now 4.00pm, I've been up for a while now catching up on stuff and answering the telephone which seems to have been ringing about every 20 minutes since noon, That may be an exaggeration, it just seems that way. Sarah come downstairs around 11.00am and got her Dad to make her breakfast, still seems to be a bit out of sorts but don't we all after the night we've just had! Thankfully we don't often get such long episodes of what I call "autism extreme" from Sarah, at the most it is only for an hour or so a day, and good management keeps the rest of the day cool, calm and collected as they say, hopefully we won't get another one for a few weeks. How people cope with caring for those who are worse off than Sarah I do not know, I'm exhausted after one night, what it must be like to deal with it day in day out I cannot begin to imagine, and there is so little support out there.

For most carers of adults with autism it isn't therapies and cures that are needed, it is psychological support for your own mental health and to give sensible guidance on how to deal with the sometimes illogical and bizarre behaviors you are presented with. While they are at school they have valuable input from the educational psychologists, but when they finish school psychology disappears and as much as I have tried to make contact within the NHS, I cannot get any further than the community nurse for that sort of help and advise, there are no psychologists available to the autistic community where we live and as far as I can tell, the two and a half psychologists we do have are completely swamped with referrals resulting from alcohol and drug abuse. So not much hope there. On the positive side we are blessed with an amazing speech therapist who does what she can with Social Stories, but you can only go so far with those.

Enough!! getting off the soap box and retreating to the kitchen, it's tea time, I've got to get some food together or we will all starve, apparently, and anyway I've got a pottery class to go to, so, normal service is resumed, and here's to tomorrow!!


  1. It takes a strong person to do all this and appreciate every minute of it.

    Hopefully you will have a good night tonight :)

  2. I've supported people with autism for a while so I know what you mean. Is there something called "Parent Partnership" in your area? what about calling your local LEA and ask their Autism support team, if such a thing exists in your area. I coach baseball to young people with autism. Great stuff and we do rather well. we're a team with quirks, but ve've wo 2 games up till now and they will go down in legend! I'm taking other young folk with SEN to France in May, with one of my first autistic "friends" as a leader. He's done really well in his own way. To celebrate him learning how to use the public transport, we finished it off at The Racecourse in wrexham for a game. I had his name put up on the scoreboard. he loved it.