Tuesday, 29 September 2009
One of the many joys of living with a person on the autistic spectrum is the refreshingly frank way they say exactly what they think.
JORDAN: Egg, I'm not going to have sex with the cat.
ME: Well, that's good. Having sex with cats is against the law.
JORDAN: Yes, and the cat would burst.
Silence as we contemplate this image.
JORDAN: Egg, can you make a sound like a cat bursting?
Monday, 21 September 2009
Jordan is very much wedded to routine, which comes as no surprise to anyone who is familiar with autism, I'm sure. Though interestingly, he has allowed some alterations over the last few days which have surprised me.
We got to the dentists without too much fuss AND tried out the Gourmet Burger Kitchen in East Dulwich too - a first for us. Click the link for a voucher! This also went well as Jordan enjoyed his burger and admired the VW Van-style graphic art on the walls. Hats off to GBK for this. Most restaurant chain art is dull beyond belief.
Today, he has a day off school but actually consented to come with me to get passport pics done at the local chemists, Kristal Pharmacy (is there anything they don't sell? We found pasta in there today). Not only that but we went to the butcher's, the baker's but alas there is no candlestick maker down Nunhead Lane or we'd have gone there too, trust me. May not sound much but this break from routine is a huge step forward for the boy.
Monday, 7 September 2009
Yes, it's the end of the holidays. I often feel I am the only mother who really enjoys having the kids at home! What's not to love? We get up earlier than term time, wander round sipping coffee and chatting. I can write, the boy can chill. Most relaxing and indeed conducive to literary inspiration. The house is now MUCH too quiet...
Monday, 3 August 2009
Yes, indeed. I do love the hols. Ironically we all get up much earlier than we would do in term time. I asked Jordan what he had planned and he replied 'I'm going to watch videos and then relax' Talk about multi-tasking. Working from home, this frenzied activity is not at all stressful to manage and quite often, I find myself next to Jordan as I write. At the minute he is watching his new obsession Mr Bean and developing a very fine impersonation of his catchphrases, if I say so myself.
In other news, the search for chromosomal definition continues. It turns out that there is extra material on chromosome 9 but we are no nearer any kind of definitive diagnosis for its significance for Jordan. Oh well.
Happy holidays all.
Tuesday, 16 June 2009
Yes, the boy has returned. He had a great time. He reported that girls in bikinis were not much in evidence. Possibly because the clubbers are up all night and asleep all day. He talks a lot about having a girlfriend but as I said to his neurotypical sister, he may have to leave the house once in a while to find one...
Still waiting on results of blood tests for possible genetic conditions. In one sense, it doesn't make a whole heap of difference. Nothing alters in Jordan's educational provision or his daily life. I suppose it's one more piece of the jigsaw.
Wednesday, 13 May 2009
Yes, the boy has departed for sunnier climes. See post below. It's far too quiet in the house.
Jordan was ecstatic to be going. I think it's weird that he's going but think it's a good thing. It will challenge him to be more independent. I'm not even convinced that he thinks about us that much when he's away; his autism means he lives very much in the moment and deals with the here and now.
The person who is really suffering is his father who hates it when his son is away.
Tuesday, 28 April 2009
Yes, it's that time of year and the boy is off on the annual school trip. last year it was Lanzarote, this year Ayia Napa, if you please! Electra Village to be precise. Reviews and photos here The school have been before and always had a good time. I won't be able to stand the silence so I'm off to Wales to see my mum. Jordan looked most put out. He clearly expected me to be weeping in a darkened room until his return...
Friday, 27 March 2009
Jordan is currently developing several impersonations which is interesting as he has always had problems with expressive speech. Maybe repeating certain well worn favourite phrases bypasses the usual linguistic pathways.
His three voices of choice are Cartman, Jimmy and Timmy all from the mighty South Park. Crude? Oh yes. Staggeringly offensive? I should hope so. NO ONE is spared. Some of the best characters (with disabilties) that we've seen in a very long time? Why else would we be watching...
Tuesday, 24 March 2009
So anyway, I was at a coffee morning at Jordan's school yesterday to have a look at their shopping and independence photos.
Sure enough Jordan spent the entire time trying to trick me into saying the word 'arse'. Sigh.
Here is a pic of him and his best mate Luke.
Wednesday, 18 March 2009
Tuesday, 3 March 2009
Well, the plot, as they say, thickens!
Ongoing genetic testing has revealed that Jordan has extra material on Chromosome 9.
Testing continues and we should know more in a couple of months. Looking it up on the web revealed this could be the cause of Jordan's developmental delay! Blimey! Not the meningitis then.
'Other changes in the structure or number of copies of chromosome 9 can have a variety of effects. Intellectual disability, delayed development, distinctive facial features, and an unusual head shape are common features. Changes to chromosome 9 include an extra piece of the chromosome in each cell (partial trisomy), a missing segment of the chromosome in each cell (partial monosomy), and a circular structure called a ring chromosome 9. A ring chromosome occurs when both ends of a broken chromosome are reunited. Rearrangements (translocations) of genetic material between chromosome 9 and other chromosomes can also lead to extra or missing chromosome segments.'
Thursday, 26 February 2009
Today was Jordan's annual review. As I've blogged previously the next couple of years are crucial as they are concerned mainly with transition. Jordan's statement of special educational needs ceases and his funding passes to Adult services. I've heard many bad reports of how help falls away when the disabled young person becomes an adult. I certainly had the impression from the Connexions representative that she would work flat-out to prevent the support from breaking down during this process.
Anyway, it all went very well. The school is pleased with Jordan's progress. His father and I find him a delight. Jordan came to the review from his careers lesson where they were exploring road construction as a job. Nothing like a bit of role play! Jordan said he does want to go to college, that food tech was his favourite subject and he would like to make pizzas for a living. The Connexions rep said that there were various organisations such as Remploy, Bede and Toucan who support the disabled young person in job placement, which was very heartening to hear.
And that's the funny thing, as a parent I've always kept my ear to the ground and picked up all sorts of information over the years. Apart from Contact-A-Family, is there a one-stop-shop for all info relating to the raising of a child with disabilities?
Wednesday, 25 February 2009
There's been a right to-do about Cerrie who presents CBeebies because she's missing part of her lower arm. My lovely three-year-old niece was born without her right hand. Whilst playing in a ball pool over the Christmas hols (watched by her grandma), she was surrounded by other little kids who had a good look at her affected arm. In response to their questions, my niece replied "It's alright, it no hurt!" whereupon they all ran off to play together.
And that's all I have to say about that.
Good day to you.
Friday, 30 January 2009
Jordan has the rest of this academic year plus one more then he is hopefully off to Lewisham College.
I had a good chat with a lady from Connexions who is there to support us through the process, which is a relief. Fortunately Jordan will go with two fellow students, one of whom is his best mate at school. So, more relief! In their final year, they will do a link with Lewisham College one day a week to help the transition. It's all looking good on paper.
He is 18 on Monday and appears to be growing a beard! I don't know where the years have gone, seriously.