Thursday, January 29, 2009

A study interlude

Yet again more than a week has passed. But I have been busy, honest.

In that time two OU assignments have been written and submitted. Then on Saturday I attended a day school for the writing course which was stimulating and felt far too short. My mind is now buzzing with ideas for our final big piece of assessed work. Most of those who attended on Saturday met up again on Monday to continue informally. Sadly I couldn't make it, but they kindly looked over my work and fed back to me by email

I have also been glued to the BBC new channel, Obama watching. So far, so good. The same can be said for Son 1's college attendance.

Three notable things:

1. The death of John Updike has provoked a flurry of tributes. I haven't read any of his novels, though I do remember really enjoying a story I read relatively recently. I think it was online but I can't remember where, so that's not much help. Sorry.

2. I have rediscovered my Nintendo DS which had laid dormant for may months. I enjoy doing word puzzles on it but I also now have this. Not a Sony reader, sure, but actually quite readable in small doses.

3. Another birthday has passed, without too much fuss.

Tuesday, January 20, 2009

Notes to Obama: Maya Angelou

I don't usually post twice in a day but I have just found this and, like the writer herself, it is inspirational.


Yesterday was supposed to be 'Blue Monday', allegedly the most miserable day of the year. In a world which is teetering on the edge of financial chaos, where people are losing jobs every day, the title seemed very apt.

I was brought up by parents who are prone to anxiety and negativity and I know I have inherited a tendency towards those traits too. However much I try to be a positive person, I can never quite stop the negative thoughts encroaching.

But today there are things to celebrate.

Barack Obama is to be inaugurated as the first black President of America. The world has high hopes. Even though it is unlikely he will be able to meet all those expectations, just the fact that history is being made is enough to start with. He has a huge job ahead of him, but his calm demeanour suggests he may just be up to it.

On a more personal level, yesterday Son 1 started college, the first time he has been able to access formal education for three years. Right up to the last minute I wasn't sure he would manage it, he had hardly slept at all for two weeks due to anxiety. But when the moment came he seemed quite calm, he went off on his own and we are very proud of him. Another small step on the way to reaching his goal.

If you need proof that staying calm and positive is good for you, here it is.

I'm going to try hard to follow the advice.

Friday, January 16, 2009

Computer says no

I had a true Little Britain moment earlier this week.

Last summer we lost our child benefit for son 1, because he was over 16 and attending a mental health provision with no educational element, rather than being back in school or college. I suppose he could have claimed incapacity benefit, but we didn't suggest it, not wanting him to start off adult life feeling that he has no need to study or support himself. We were very clear that we would claim child benefit again as soon as he went back to education.

He is due to start college next Monday so this week I phoned the Child Benefit office to give them the information and ask for the benefit to be reinstated from next week.

'Oh I can't take the details now. Phone back next week when he starts.'

'Can't you just take the information now, as I am on the phone?'

'The computer won't let me enter it this week. Have you got all the course details?'

'Yes, here right in front of me.'

'You'll have to phone back next week please. I can't enter them on the computer now.'


Three notable things:

1. A lovely dinner out last night.

2. Knowing that my car is safely through its MOT for another year.

3. Catching up with an old friend today and arranging to meet another very soon.

Thursday, January 15, 2009

The Daily Mail strikes again

The Mail loves to write about autism. Sometimes their articles are well balanced but more often they are stirring up even more hysteria over the MMR or promoting the latest 'cure'.

A friend has just led me to this. The article itself and the comments show what a wide range of views there are.

No, having an autistic child does not ruin your life. It profoundly changes it, certainly, in ways you might never have expected. You often do have to lower your expectations of what your lifestyle might be. But it is not that usual for both parents to have to give up work to look after the child. There is help out there in the form of specialist schools, many of which are residential, respite care from social services, foster care...

But these things don't just fall into your lap. Parents have to be proactive, above all they have to fight for what they need. It's hard when you are worn out, but it is worth the effort. When Son 2 was small I knew that if I could just get him into the right school our lives would be so much easier. With help I fought, I won, we have been supported. I started to work voluntarily for our local autism charity to help develop playschemes and other services, all of which we as a family have benefited from. My son hasn't ruined his grandparents lives, they live far away so rarely see him and we don't make demands of them. My husband has always worked, usually 12 hours a day, to support us and we deal with this on our own.

Of course every child on the autistic spectrum is different because they are a fascinating blend of varying degrees of autism with their underlying personality. For example my son displays quite different traits to Casdok's and is much less able than Crystal Jigsaw's daughter, yet we have all had to fight for what they need. There is no child who cannot be found care and an education, even if it means moving out of the family home. Often difficult autistic children blossom in the consistency of the 24 hour curriculum in a residential setting which understands their needs. Others do better at home. There is no right or wrong.

There are many journalists and writers out there who write about their personal experiences of parenting autism. Nick Hornby, his ex-wife Virginia Bovell, Charlotte Moore and many more. When they write they are honest, but above all their love for their children shines through, just as it does on so many blogs.

This piece, however, is written by an outsider, someone who just sees a child as a burden, as a barrier to a certain way of life. A child who, if a test had been available, should have been aborted.

(PS I haven't written yet about Simon Baron-Cohen's view that a antenatal test for autism is on the way, because I'm not really sure how I feel about it. Watch this space.)

Wednesday, January 14, 2009


So a Labour MP says that dyslexia is 'a cruel fiction leading to crime'?

Son 1 has relatively mild, but very real, specific learning difficulties, mainly affecting his ability to write, spell and generally express himself on paper. I had raised queries for many years before two teachers at middle school finally backed me up and agreed there was a problem. So we had him privately tested and a couple of years of extra input, both in school and with a specialist private tutor, helped enormously. But he is still not confident with writing and his ability in this area does not reflect his overall level of intelligence and functioning.

High school didn't recognise his need and took him off the special needs register. His school career subsequently went belly up, though not entirely from that cause. He is not a criminal, in fact quite the opposite, his anxiety makes him exceptionally law abiding. I do, however, know other children with dyslexia who have got themselves into trouble, largely because they too have been badly failed by their teachers and became totally disenchanted with education.

Son 1 started reception class in 1996. The Labour government came into power in 1997. An own goal?

Three notable things:

1. I am constantly amazed by how I see all of life through my internet contacts.

2. The slow job of decluttering has begun. Bags of clothing are being sorted for the charity shop.

3. Son 1 has taken a temporary part time job helping on a scheme for younger teenagers who are experiencing difficulties in life. We are so proud of him.

Thursday, January 08, 2009


So, I now have a mother-in-law with diagnosed Alzheimers and a mother with some sort of early dementia, as yet unspecified.

My father accompanied my mum to the GP on Tuesday and discovered that what my mother had reported back from a phone conversation before Christmas, ie that her difficulties would not get any worse, is incorrect. Was that incomprehension ( most likely) or denial?

Anyway they are going to need some support, albeit from a distance. My dad is, quite correctly, wanting my mum to maintain her routines and keep as independent as possible, but it is clear that the deficits she has suffered in language skills make social communication and even things like shopping difficult at times.

Now that is when the penny dropped. Her difficulties now are not so different to autism and therefore the sort of strategies we all use for our autistic kids, such as regular routines, visual timetables and alternative means of communication can all come into play. She occasionally gets very confused about what day it is, so I just suggested that they actively cross each day off on a calendar, so that the next morning she can see clearly the day of the week. Simple, yes. Obvious, well yes, but perhaps not if you are in the middle of it. My dad found a suitable calendar yesterday and started straight away. I think he will need to be bringing his skills as a former primary school teacher back into practice. Let's hope it helps.

If anyone has experience or tips on helping a relative with dementia, I'd be really interested to hear.

Three notable things:

1. The GP said Son 1 has 'the worst chest infection he had heard for a long time'. Strong antibiotics and inhalers were prescribed and seem to be starting to work.

2. Pressing on with the novel, slowly but surely. The words are coming in short bursts rather than a steady flow.

3. A much better mark for my second OU writing assignment, a film script. Hooray!

Saturday, January 03, 2009

Jett Travolta

The news emerged last night that Jett Travolta, the teenage son of John Travolta and Kelly Preston, had died tragically on a family vacation, apparently from a seizure.

There has been much rumour over the years as to Jett's condition and true diagnosis. Not being a huge celebrity watcher myself, I couldn't be bothered to follow up all the Google links this morning, but Kristina Chew, (formerly of Autism Vox, one of my favourite autism blogs) has tackled the subject in her usual balanced manner here on her new blog.

Does it matter whether Jett had autism or not? Well, yes and no. I can absolutely understand a family wanting to keep their child's privacy. Yet at the same time a public acknowledgement, even if it is just to say yes, my child has the condition but we don't wish to sell the story, can help other parents.

When a child is diagnosed with any disability or serious medical condition, families can feel very isolated. Just knowing you are not alone, that even celebrities have children with similar problems, can be comforting. It can help parents get past the denial which is a normal part of coming to terms with the situation, the grieving process for the child you once expected.

Awareness raising is another factor. Again this might be through formal interviews or autobiographies, but it could equally just be by being an active role model. We all have our own levels of how much we want to disclose about our family lives. I feel comfortable in talking about son 2 on here, but as I'm sure you are aware, you read the edited version. My novel is tackling the subject in another way, by combining elements of our story together with things I have learnt from others and by adding in a huge amount of situational fiction. The emotional truth will be told, but in a different way.

I wonder how much more, if anything, the Travolta family will eventually disclose? It is, of course, absolutely their right to keep Jett's life and death private, yet at the same time they could in due course celebrate his life by sharing and helping others.

But in the meantime my sympathies are with them for their sad loss.

Friday, January 02, 2009

The festive season in review

Actually it wasn't too bad. No one was ill over Christmas, though Son 1 has just broken our run of good health by coming down with a very nasty cough virus yesterday ( and no, it isn't due to too much partying, though he did that too!)

Not putting up decorations meant that home seemed normal for Son 2, though I felt that this year he had more understanding of other family Christmas traditions. For the first time ever he decided to try the turkey and couldn't get enough of it. He also opened all of his presents on Christmas Day rather being distracted by the first one or two and ignoring all the rest. However he decided to get up between 5.30 and 6am every morning until today, when Son 1 was up and needing me to find medication at 4.15am...

We have had four playscheme days, which has helped enormously as Hubby and Son 1 have been working over the holiday period. I have introduced Son 2 to YouTube, but he is so adept at navigating around I think he must have already used it at school. We have bookmarked a few starting points and he is discovering videos of old kids TV programmes. Currently we are being treated ad nauseam to 'Barney in Concert' which we had on both video and CD years ago. Eek.

Three notable things:

1. I managed to be very restrained when I visited the sales, though I have bought a couple of new warm sweaters online.

2. Taking a quick breather from OU study, though I shall have to restart in earnest next week.

3. Deciding not to invite my sister's family down for the day. Our house is just not spacious enough for an extra four big people as well as Son 2. We'll invite them in the summer instead and pray it doesn't rain...