Tuesday, 31 August 2010

Benmore!

A has gone to Primary 7 camp for a whole five days! I'm beyond worried about how he will cope but the staff at the centre and the teachers have assured me that they will look after him and let me know if there are any problems. I went to the Middle East for two weeks and spoke to him three times a day every day but now he is only allowed to write to me via the SAE I put in his bag.

Our last exchange went something like this:

Me: *kiss
A: "Urgh! Mum! My friends are over there!" (Flails arms like Kevin the Teenager)
Me: "Sorry."
A: "Mum, it's okay to have a good time will I'm away, you know. Don't sit in the house and cry. I'll be having lot's of fun so you should too. Take B to Monkey Bizness or something."
Me: "I'll see. Now do you remember the rules for camp?"
A: "Yeeessss Mum. Hang up wet clothes, remember my manners, put my dirty clothes in polybags and listen to the instructors. Erm...erm... there was something else...."
Me: "Remember to change your pants everyday and clean your teeth twice a day!"
A: Oh yeah, I knew it was something boring...."
Me: "!"
A: "Love yooooouuuuu...." (runs off into school)

Cue tears and snotters!

I miss you wee man but I'm awfully proud of you!

Monday, 30 August 2010

A. A: A's Autism pt.1

I had been wanting to write a post on autism for a while now but had been swithering over what to say, what to write about, what point was I trying to make by posting on the subject and so kept putting it off. The truth being I still do not know what to write about autism and our experiences of the condition. I suppose I should use this time and safe to talk about how it has affected us, how we cope with it and what it means to us. Now, when I say us, I refer to us as a family unit but I'm not writing from a self centred viewpoint it's just that A finds it difficult to articulate how he sees himself in relation to his peers, how he thinks or perceives that his autism affects him. It is precisely this issue i.e A's self perception, that has got me thinking about A's autism over the last few weeks. Now seeing as this is the first I am really mentioning about A's autism, this may take a while... bear with me!

When you have a child with ASD in the mainstream education system, autism sits like a cloud over your head. When your child is not 'autistic enough' (I'll come back to this!) to warrant being educated in a specialist school the condition is like a cloud, or that is certainly how I perceive it to be. I can imagine when you have a child on the 'severe' end of the spectrum that the condition is like a shadow and one that you live in for the duration. This is not as dour as it sounds but in the sense that it's shadow is a constant presence and something that you adjust to because of this. In contrast to this I feel that having a child at the other end of the spectrum is like clouds, that you have days that are grey, completely overcast and some that have clear skies and sunshine. This can either manifest itself on a day to day basis or it can happen at specific point during his life. A's diagnosis and arranging nursery education was one such cloudy spell.

So from the top! When A was eighteen months the health professions worried about the development of his speech. By the time he was two he was being given various tests by various professionals, looking for the cause of his lack of speech.

NB: I should interject at this point to say that A excelled way beyond his peers at all of the developmental stages from birth to eighteen months so later speech development didn't appear to worry anyone for a while.

At age two and a half, the finally pulled me into a very dim office and said the immortal words "we think your son is autistic". Stunned by this revelation (I thought we were going in for more tests that day), I asked them to repeat what they had just said, just in case I had misheard them "we think your son is autistic". The conversational momentum had clearly gained speed so they continued; " we very much doubt that he will ever comprehend anything that you will say to him", "He will need educated in a specialist school", "He will never be able to fend for himself". I became hysterical, tears were streaming down my cheeks and the specialists in the room became puzzled by my reaction. "Erm...are you alright? Do you need a tissue?" I felt like a complete arsehole! Was I the only parent to have reacted like this to such news? Had they not seen a parent grieving as they life that they had planned out for their child flashed before their eyes? I knew nothing of autism and what this held for A's future. So that was the beginning of all of this and what ensued over the next few years was pretty intense.


Specialist after specialist came and poked and prodded at him and I decided to up my hours at work and start another job so I could send him to a private nursery when he turned three rather than rely on the education board to get their act together. I was prompted by a conversation with a woman at the hospital who ran a private nursery in the city. She said that she had worked with severely autistic children and all sorts of disabilities overseas as a teacher and now that she was running this nursery she would love to meet A to see if he was suitable for the nursery. After meeting A and taking my bank details, she decided he would fit in well and assured me that they would do everything to support him to make his time at nursery enjoyable and educational. I was urged to leave him and go and get a coffee for an hour. When I came back she said that he did really well and enjoyed his time there. Over the next few weeks we built up his time and everyday I was met with reports about how well he was doing. After the October break, I asked if I could spend a day observing how A interacted with the kids as I was planning on implementing a behavioural programme I had attended a training course on. This programme was about reinforcing correct socially behaviours in autistic kids, not correcting bad behaviour, about tackling that moment when in M&S Foodhall, your child points to a rather 'portly' lady and shouts at the top of his voice "would you look at the size of that woman! Mum! Mum! Come and see!" So I sat in the room while they continued their day. After the morning arrival, the children were ushered into the reading corner to get a story to start off the day. While all of the child made their way to the corner, A was sat down at a table with a member of staff while he played with some toy soldiers. When story time was finished I enquired about why exactly A was excluded from this activity, to which I was told, "Oh, he won't behave for a story so we make him sit it out". Despite my insistence that they include A in everything and arranging for specialists to come in to talk with them about strategies for autistic kids, he spent a good few months more at this establishment 'sitting it out' until I demanded yet another meeting with the manager. This same woman sat me down and said "you know, I have lots of experience of working with kids with disabilities and it is my opinion that A is not autistic but merely a bad boy". After going ballistic, we left and I reported the establishment and the management to the local authority. I spent the next few months teaching A at home and taking him to the playgroups and nurseries I worked at, waiting for another solution...

Wednesday, 18 August 2010

Glamourous Camping AKA Glamping part deux.

So Clan OhMammy went Glamping and it was like camping, in fact it was camping. We lived in a tent, it was baltic, had to use communal bathing facilities, were bitten by midges and slept next to a field full of Heeland Coos. And it was awesome.

Okay...so my grandiose statements about blogging regularly were just that, grandiose. The school holidays have meant a severe lack of time and energy and even now as I try to concentrate on recanting the story of our little holibags up North, I'm becoming exhausted and am unable to recall what exactly we did. I must resolve to set aside a time to do this or it'll never get done.

Will update this soon. Back to school tomorrow. Am I organised? I've no idea, I'm too tired to think. xx

A Moan about the Edinburgh Fringe or "What the hell happened to Fringe Sunday"?

My intention tonight was to write a blog about attending the Annual Edinburgh Fringe Festival with kids. I had resolved to give insider hints and tips and to dispense sage words. However, five minutes spent pondering the wonders of the Edinburgh Fringe and reliving the last fortnight stirred something dark within me and so instead I offer you, the reader, a quick rant on coping with the Fringe in Edinburgh, on coping with the chaos and mayhem that it causes.

Don't get me wrong, the Fringe is great, we go every year. We also attend all the various other festivals happening in and around the same time: Mela, the Book Festival, the International Festival, the Film Festival. Because of this we end up bankrupt by the end of the summer. You see the Fringe is an absolute rip off and the ticket prices are obviously designed with foreigners in mind. The unknowing tourists cue up at the box office in the capital city of Edinboro (like Malboro) obediently (which is a farce given the tens of thousands of people buying tickets and having to stand in a poky close with these tens of thousands of people to pick them up is an ordeal!) and before they can actually work out the exchange rate - BANG!- hundreds of British pounds are consumed in one fell swoop by the plooky undergraduate ticketing staff. For the inhabitants of Edinboro, we are bombarded with programmes in the run up to the events only to figure out that in order to actually see a handful of the shows that you would want to see, you would actually have to remortgage your house or at the very least rent it out for the duration to some God awful visitor and live in a cardboard box with your kids and flat screen TV. This, my friends is the source of my rant. If my kids want to go and see some balding dickhead shout into the crowd "I can do science, me!" and blow up a portaloo nicked from the nearest housing development, I have to pay for a ticket. This year some of these wastes of money have cost me £15 a time. Never mind the fact that I am probably reading that days edition of the Guardian at the time. Once upon a time there was a free event, an event that let the inhabitants of Edinburgh, who are already burdened with paying Council Tax and extortionate rents for the privilege of living in said city, experience a taste of the Fringe. Greed and ineptitude followed as this event was cancelled year after year, citing a lack of sponsorship and blaming the recession. Despite Edinburgh City Council bailing out the Fringe numerous times, Fringe Sunday is no more, a big two fingers to anyone who can afford to go to as many shows as they want.

We probably spend enough to afford a short break somewhere on tickets to shows every year and will we love it, the constant hoards of incredibly rude and hurrying visitors gets on my nerves... Don't get me started on this years Book Festival and the hoards of arrogant middle class parents and their equally socially inconsiderate children!