Tuesday, 11 September 2012

Everyday stresses.

I haven't written a blog for a while. I think I was waiting for some positive to happen so I wouldn't have to write something negative. But I guess that's missing the point of the blog- writing an account of our autism journey- if I leave out the bad bits.
The thing with autism is that nothing particularly bad needs to happen to make you feel sick with dread, worry & anxiety. There are constantly a million worries simmering away in the background, and no matter how many times people tell you- and you tell yourself- that there's no point worrying about the unknown, you    can't switch it off.
Because when you have children, there are certain things that you think are a given. And when they aren't a given any more, you worry. A lot.
River started preschool last week. I'm going to be with him for several weeks/months, he has a 1:1 preschool worker, and there are lots of allowances made for him. He did much better than I thought he would, which was great. But he's still a million miles away from all the other children.
We arrive 15 minutes later than everyone else so he isn't upset by the disruption. We don't use the main entrance, we use the side entrance which is through the playground so that River can spend time in the playground first and come indoors when he feels ready. He's allowed to graze on carrots & rice cakes whenever he likes as food is a comfort to him. He doesn't have to join in with Circle Time- he doesn't even seem aware that it's happening. He doesn't have Snack Time with everyone else. He has a side room that's just for him, that he can go to if it gets too much. He runs up & down the hall flapping, in his own little world. If he's outside & the other children come outside, he gets upset so comes back in. And when he's had enough, he can lead me to the pushchair and go home.
He needs supervision constantly. He's had two sessions at preschool, and has so far: tried to eat a stone, tried to eat some playdough that he found outdoors, tried to casually step off the climbing frame (a two or three foot drop,) pushed two children that weren't even in his personal space- he just didn't want them to be there- and scratched a child's face making her cry (I don't think he wanted to hurt her at all, I think he just wanted to grab both sides of her face and squeeze to see what it felt like- I think it was a sensory thing. He also had a big meltdown, throwing himself about, screaming, and staring into my eyes as if to say, "I don't understand what's happening mummy, make me feel calm & safe again."
It's bound to take time for him to settle. Going to preschool is massive for any child, so some of these things will probably get better. But- what if they don't? These allowances won't be made for him at primary school. People have said that watching other 'normal' children may encourage him to socialise & communicate better, like it will 'rub off' on him. Somebody described this wonderfully on a special needs forum recently, saying, "forcing an ASD child to socialise is somewhat like saying to someone who cannot walk easily 'go on, you CAN walk really....' " which sums it up pretty well.
So naturally, I worry about schooling. I say I, and not we, because Tim is so much better on concentrating on the present & not the future than I am. I worry whether or not he'll tolerate the mainstream village primary school- or indeed any mainstream school. I feel like I'm meant to say that I'm hopeful he'll be fine in mainstream, that I think he will, that that is what I am planning for. But it isn't. Hand on my heart, I do not think full time mainstream education is going to be right for him. The choice may be very obvious in a couple of years anyway- he may not develop speech & may remain developmentally delayed & therefore need a special needs school. But even if he develops normal speech, is developmentally on par with his peers or even especially bright, he is still lacking the fundamentals of mainstream school- the ability to understand and communicate with other people. It's the whole square peg in a round hole- you're just going to damage the peg. I'm not completely writing off mainstream schooling- River's only two, who knows what the future holds- but I really think that he won't cope with full-time mainstream school.
So what are the other options? A special needs school is the first thing that comes to mind. Tim has a lovely auntie who is a special needs teacher for a local special school, and from what she tells me it sounds wonderful. Then there's the option of a mainstream school with an autism unit attached to it- sounds perfect on paper. But I've been told they're not as great as they sound- it would basically be all the bad things about mainstream school without the specialist support from experienced teachers. Then there's homeschooling- now I love River dearly, but after 2 years of being with him every day apart from maybe 3 or 4, I need a break! But if none of the other options were working then I'd consider it.
The other option I've read about on forums is 'flexischooling.' It's a cross between homeschooling & mainstream school- a popular option for children that can't manage full-time mainstream, so they may do 3 or 4 days at school & a day or two being educated at home, or if they can't handle a whole day at school then maybe mornings at school & afternoons home educated. Of course, I'd encourage socialising but in a non-pressurized sort of way ie things that River was interesting in, such as chess club, bowling or whatever.

So yes, that's a big worry & a big stress. And it's on my mind all the time.

Next stress: talking. I JUST WANT RIVER TO TALK. If I had a pound for every time someone said to me, "he'll talk when he's ready" or "my nephew/cousin/neighbour/Einstein didn't talk until they were five, he'll get there" I'd be pretty rich. HE MAY NOT GET THERE. Not all autistic people can talk. That's the difference between River and someone's nephew/cousin etc- a late talker is very different to someone on the spectrum. I want him to talk. He has so much going on in his head, you can almost see the cogs turning- and I wish he could express his thoughts. I recently bought him a speech & language DVD that he loves. I recommended it to the mums on an autism forum I'm on, and several of the kids have started saying a few words or mimicking the pretend play that's on the DVD- River hasn't. It's so frustrating.

Massive, massive stress.

Then there are all the millions of little developmental things that he can't do. He can't feed himself with a spoon or fork, can't make marks on paper with crayons, doesn't clap, doesn't wave, doesn't point to share interest, no pretend play etc. etc. etc.

I just want to help him. I want to TEACH him. We've worked really hard at building a relationship with him, and it's lovely to see. There are several games that he likes playing with us, his eye contact is great, he likes to climb on us for cuddles, and his interaction with us is just lovely.
But how do we teach him to interact with others? He hates people coming into our house. He dislikes other children. What can we do to help this?

Of course, it isn't the only stress in our lives. We have other big worries & stresses to deal with, we have the usual things like bills & housework to keep on top of. The world just seems awfully unfair sometimes and can make you question why you deserve the hardships. But then again, everyone has hardships. No one deserves them. Some people's hardships are much worse than ours.

Sigh. Will try to make the next blog a happier one!


  1. The World can seem like an unfair and overwhelming place sometimes. I think you just have to grab any single moment of joy, when they happen and keep a good hold of them in your memories. Use these moments as you would a 'photo album', like Tim's 360 project, and delve into it everytime life is a bit shitty. It doesn't make the present go away but it may remind you that there are good and unique times ahead. Huge hugs and virtual cake and tea x Martyn

  2. I'll email in a minute and explain how I found myself writing this.
    I hope you can get a little break somehow as you are sounding so exhausted.
    River sounds a wonderful little boy. Yes, I realise it is all complicated and difficult because of how the majority of the world makes the world. But in the middle is this little awesome child with his own gifts.
    You mention communication. Speech is not the only way to communicate. I use sign language a lot. There are hundreds of sign languages, of course, as there are umpteen spoken languages. I use British Sign Language. We live in a world that is speech-dominated, but everything I am writing could be conveyed eloquently in sign language.
    This may turn out not to be helpful information for you and your family and your child - but perhaps it shows that there is so much information and knowledge on our planet, but we don't know what we don't know, and we need to keep looking, eyes open, ears open. All is possible.
    Monica x

  3. Life does seem so unfair at times. Reading your blog leaves me inspired and in awe. River has two wonderful Parents and he obviously acknowledges and responds to that. He's communicating with you (Just not by speech, at the moment)

    One step at a time, storing up the little break throughs and steps that River makes will allow you to look back and see a collection rather than just the last little breakthrough.

    Sending you both loads of Hugs, and some more Virtual Tea and Cakes

    I hope you can get a break soon


    X X X