Tuesday, 1 June 2010
The Truth About Autism
Inspired by my friend and fellow autism-mum, Amelia Critchlow's post of the same title, I've finally got up the courage to tell it like it really is.
Regular readers will know that I like to call it honestly anyway, but recently autism and everything that goes with it has been threatening to engulf me- it won't - but here's why.
The odd looks and comments we get when we go out- especially if Lyla lashes out - I can honestly say don't bother me. I've developed an incredibly thick skin and ability to stare very hard at nosy people.
The stuff that's more challenging is what goes on behind closed doors.
Firstly the emotional ache, which is always there. I try to focus on the things Lyla CAN do rather than what she can't. And when I do this, I am often surprised. Last week she appeared in a fashion show at school and managed to walk down the catwalk in a cast of over 100. Go Lyla! Also, she's the only child in the school to have so little awareness of social graces that when asked in her homework what she thought of the book, just writes 'Boring' and when asked who she thought would like it, writes the name of the author! Or, in the supermarket yesterday shouts out 'If this aisle was full of Paris cheese, it would turn my oxygen to vomit'!!!!
Amidst all these successes and quirkiness, there has also been the challenge of her rampaging through the family home. This weekend she washed all the windows with suntan cream, smashed a vintage chandelier, hid my husband's guitar tuner (the replacement for one she had hidden previously) cut up the sofa and autographed it in violet permanent marker, emptied the whole contents of the freezer out and left them to melt on the kitchen floor, hidden a pile of peas and apples under the sofa, poured fizzy water into toilet wipes box, flooded the bathroom (I'm crossing my fingers for the Victorian cornicing, its holding up so far, I hope it survives, albeit, now dyed a lovely shade of parchment). She also left her favourite outfit in the garden and the foxes got it, keyed cross shapes into my car (I now look like a weird Satanist/ Christian Evangelist driving along, as if I don't have enough to worry about), refusing to wear her seatbelt (and I mean physically REFUSING) and ricocheting around the car.
This is all I can remember for now, but it's enough to be going on with. Don't get me wrong, I don't care about the destruction of my property. Well, I do, but I'm past caring. But I physically can't keep up with clearing up after every incident and do everything else I need to aswell.
And everything else, in autism terms doesn't just mean the other domestic stuff. It means the whole raft of 'strategies' and 'treatments' and 'therapies' that I have to try and implement in order to try and help improve the outcome for Lyla.
I spend a lot of the week at appointments with various professionals, training sessions, reading up and preparing things (visual timetables etc) for Lyla. I sometimes feel like I have a Phd in autism. And still I often feel it's as elusive and unknowable as ever.
To demonstrate, I'll list a few of the therapies that I have either considered or actively DO with Lyla, ranging from the essential to the completely wacky:
Occupational Therapy- proprioceptive training exercises, 20 minutes daily
The Listening Programme- sensory integration therapy, 15 minutes daily
Speech Therapy- ongoing programme of how I speak to Lyla and play games with her to encourage social interaction
Drug Therapy- Melatonin prescribed for sleep by the paediatrician
Nutritional- Fish oils and certain vitamins may help autism
Behavioural Strategies- constantly
Intensive Interaction Therapy
Applied Behavioural Analysis
Son Rise Programme
Berard Auditory Training
Gut Analysis (!)
Hyperbaric Oxygen Therapy
Gluten-Free/ Casein-Free Diets
Visual Aids & Timetables
Lyla is being assessed for ADHD at the moment, so that's another extra layer to deal with.
She's also pretty behind at school because she finds it really hard to concentrate - I try and help her to catch up, but she usually refuses to read or write for me. Everything comes second to her obsession with television, which she watches with the sound cranked up, sat right in front of it, bouncing on a FitBall. It takes over the living room and it's just not worth the fight most times to get her to put it on something I like or even better, to turn it off.
As far as these therapies go, there's always more you could do and there's always the knawing doubt that unless you're flat out doing everything you can- which you can see from the list above would probably take several lifetimes- then you're not doing enough. It feels like a bottomless pit. But I want to do as much as I can and no matter how many times people say that you can only do what you can, I never feel like I'm doing enough, I should/ could be doing more. I want to give her the best chance.
The main point with all these therapies is that you have to do it all yourself. For example, the government will pay for you to have an initial assessment with an Occupational Therapist, but not the therapy itself, so you have to carry out the therapy yourself. Some of the other therapies are only available privately and inevitably some of the provider's try and cash in on people's desperation. I have a friend who has bankrupted herself by paying more than £50,000 on therapies for her son over the last two years.
Doing nothing isn't an alternative for most families, the autistic behaviour needs to be strategically managed, otherwise you end up with having to call the police because you have a strapping 16 year old child who has just beaten you up. Of course, you may implement the behaviour strategies and still have this happen. But you have to try.
So far this morning, she has punched me, screamed at me and lashed out at her sister- this is all part of her impulsive behaviour and her difficulty with managing strong emotions. Nevertheless, these actions leave more than a physical scar.
Additionally, we popped into the supermarket for five ingredients to bake a cake with.....she then got told off by a huge pair of security guards for touching the travelator. I explained that she had autism, because I felt I had no choice. She got really upset because I had told the man she had autism and because she doesn't understand being told off. She cried all the way home and said never wants to go back there again. I felt I hadn't handled it as well as I should, I wish people were more aware of autism- our lives would be just a little easier. I contacted Sainsbury's and asked what their policy was on making the store accessible to people with hidden disabilities like autism. They were very helpful and said they would send a note to all the stores to make them aware of the issue. I've made a decision that when I can, I'll raise the issue rather than suffer in silence as the only people that hurts is us. I told Lyla about the phone call and she said thankyou and then- 'well, the man was an idiot mum, he didn't know anything about autism, he should be sacked'- Go Lyla!!!
It's hard not to feel that all this is more than a full-time job. It is several full-time jobs. Certainly, most nights, I put them to bed feeling absolutely shell-shocked. I lie there and stare, poleaxed, so tired I could vomit, a deadweight, oblivious to all sound, just breathing. And before she started taking sleep medication, this would be just the beginning of an evening full of hyperactivity and violent behaviour.
Then I get up and start all over again.
This is extreme parenting, although nowhere near as severe as what some other families living with the condition have to deal with. I know of mothers who survive on 3 hours sleep every night (from 10pm- 1am every day) because they have a child who can't sleep, even on medication.
I'm starting to get several minor stress-related health complaints like stomach ulcers. I sometimes wonder if I will last the course as I don't see how this level of stress is sustainable in the long run. As families we need help. I need help - a fairy godmother or failing that somebody, anybody is welcome! People wrongly assume there must be help out there for us. There isn't. We have to help ourselves. The story of one of the parents on the TV programme Young Autistic and Stagestruck comes to mind. Her son was rampaging around the house, so she took him out in the car, where he attacked her. She came home and called emergency services and said somebody had to help her or she would take herself and her son and jump off a bridge. This is heartbreakingly wrong. We should and could be doing more, so much more, for families living with autism.
So this is the reason for our Living with Autism artshow- to allow the participants to share something important to them and the raise awareness of our lives.