Summertime blues

We are just over one week into Son 2's summer holiday. Now we are lucky, because he gets a shorter vacation than most, four and a half weeks rather than the normal six, and we do have some respite. He will be attending a local special needs playscheme for two days, that is ten hours, a week.

Those hours are precious. They give a chance for us to recharge our batteries, for me to write. In the past I had to try to fit my own errands, as well as fun for Son 1, into the precious free time. It's easier now there are two of us around and of course Son 1 is independent, apart from the occasional lift.

Son 2 just doesn't do going out. He likes routine and familiar places, such as the playscheme which he has attended for years, but he has a huge fear of the unknown which permeates his life, whether at home or at school. This, of course, affects the whole family. For years now holidays and even day trips have proved impossible. We tried, we really did, but having to put your child through what is for them a form of torture is no fun for anyone, including innocent members of the public who happen to witness the resulting distress. As a child gets bigger the expression of anxiety becomes less socially acceptable and more difficult for carers to physically handle. And as children get older they can and should make their own decisions about what they want to do as leisure activities. But it is something that other parents, even those with differently affected special needs children, don't always easily comprehend.

Of course this time next year Son 2 will be under the adult social services team. His playscheme is run by a children's charity and not linked to his autism-specific out of borough school, so he may have nothing and that is a worry. It would be lovely to think that with maturity he will become more adaptable, but I seriously doubt that will happen.

For now we are spending our summer largely bunkered up in our own house and occasionally, as long as Son 2 can't hear any emergency sirens, the garden. I try not to get into conversations with friends about their wonderful holidays and fun camping trips. And I take vitamin D tablets to try to counter the lack of sunlight which is implicated in MS.

There seems to be an agoraphobic tendency running down my family, though thankfully one I escaped. We've developed our current approach to the summer holiday in order to preserve Son 2's mental health and existing behaviour levels, as a deterioration in those would affect us all year round, as well as his potential adulthood care. It's worth it.

Charity funding crisis

The BBC reports today that small charities are fighting for survival due to the loss of funding from local government.

I've worked for and with several local charities over the last twelve years on a voluntary basis and I know this is true. Many of the services they have offered in the past have been partially or wholly funded by grants from the local authority from various pots of money. Funding from central government to local government has been drastically reduced with the inevitable knock-on effect.

There are of course other sources of funding such as the Lottery, the big media-promoted annual fundraisers such as Children in Need and various trusts. Each one requires a not only a stringent project proposal and budget but also a carefully worded form. Many charities will need to apply for pots of money from several different funders to keep a service afloat.

It all takes time and many small charities don't have a member of staff dedicated to such fundraising. Charities are struggling and some are merging with another compatible local organisation to reduce core costs (admin expenses, rent etc). Valuable community services are closing down due to lack of funding, staff are losing their jobs and it looks as though things will be much worse in the next financial year. So much for the Big Society.

I'm currently starting to work on funding bids with one local charity I know well. It's a side of business writing I hope to do more of in my future as a freelance writer, because it draws on both my writing knowledge, my Open University studies and my previous career as an accountant. I've served my time as a charity volunteer, now I hope I can sometimes use my skills to help others as part of my work.

Of course I'm not giving up the fiction, just broadening my writing horizons.

Carers Week

This week is Carers Week in the UK, a chance to publicise and celebrate the vital role of carers in our society.

Twice I've started to write a bog post on this and twice I've deleted it as it sounded too whiny and self-indulgent. So instead I'll just give you a few vital statistics and leave you to draw your own conclusions:

Carers save the UK £119bn a year (Carers UK).

Carers Allowance (for carers who care for a person of a qualifying medium or high level of disability for a minimum of 35 hours a week) is currently £55.55. The carer can earn no more than £100 a week on top of this, otherwise the allowance is lost (Directgov).

The current UK minimum wage for an employee over 21 is £5.93, that is £207.55 for a 35 hour week (HMRC).

Aound 50% of carers have health problems as a result of their caring duties (NHS).

More than 80% of carers are worried about cuts to services (Princess Royal Trust for Carers).

If you are interested in finding about more about carers, including young carers, there is further information on the Carers UK and Princess Royal Trust for Carers websites as well as from the NHS.

Panorama on care home abuse

I haven't blogged for a while. Sorry, but there have been family matters to resolve.

Firstly we had to take Son 2 to see a neurologist and the appointment came through more quickly than we had expected. He has been started on a small dose of some medication so we are having to monitor him for changes and possible side effects.

On Tuesday I had to attend a meeting with Son 2's social worker and the lady from Connexions (the careers service) who deals with special needs in our area. It was a meeting to kick off the planning for his transfer to adult services for continuing education and residential care. Despite my best efforts, I went into the meeting feeling rather unprepared, having failed to find out some of the information I needed, however the meeting actually went fairly well. I don't think there was much disagreement about what he actually needs, but I am under no illusion that this is going to be easy and we have to start looking at what will realistically be available to him when he leaves school at 19. But with such savage cuts, and services which are budget-led, who can predict anything?

Then I came home to face the BBC Panorama programme about the abuse of young adults with severe learning difficulties in a specialist care facility in Bristol. I didn't actually watch it, I couldn't, as even what I'd read in advance made me feel sick to the stomach. The media reports, including this in the Daily Mail by the BBC undercover reporter, were more than enough for me.

I'm glad the abuse was exposed and I hope that the programme will lead to improvements in standards in both the inspection procedures and rogue care facilities such as that one. But I think it's also important to hang on to the fact that not all care homes are like that and Casdok has written a very good blog post about the response to Panorama from her own son's care home. As parents and carers we have a huge responsibility to search out the best for our children and to monitor it for as long as we are able, because it's possible that nobody else will give them a voice unless they are in one of the good care homes such as that one.

But when we can no longer do that, then what?

PS And while I'm on the subject of the Panorama expose, you might like to conside signing the petition the National Autistic Society has set up in the aftermath. You can find it here.

Who cares?

There is currently a big campaign being mounted about the projected future cuts to disability benefits, and rightly so. But until this week less was heard about the stealth cuts being made to other services, such as respite for the carers who save the state a fortune.

Unless you have been a carer, you will have no idea how hard it is to get respite. Not just a respite service which is suited to the child or adult cared for , but any respite at all. At the moment the only respite we receive is a fairly heavily specialist playscheme in school holidays, usually two five hour days a week if we can book a place. We are very lucky to have that.

This week there has been a bit of media interest following a plea for help on Mumsnet by a lady called Riven Vincent, who had reached the point of desperation in caring for her daughter, who has huge physical care needs due to cerebral palsy. Riven is herself disabled and as a fellow MS sufferer I know I couldn't cope in that scenario either. There are families caring for adults who are similarly struggling and it is happening all over the country. Health and social care has become budget rather than needs led.

Most of my experience of caring is for my children. I was lucky to have been given advice early on about Carer's Allowance, for which I was able to apply once son 2's severe needs had been identified about 14 years ago. This little bit of cash has been a lifeline, as due to his needs I was unable to return to anything more than a few hours part time work from home. At the moment I am not even earning from the writing work I now do after losing my job.

So yes, I get Carer's Allowance. That is £53.90 a week and is taxable if you reach the tax paying threshold. On top of that I can earn up to £100 a week (should I be able to find flexible work) but not a penny more, otherwise I lose the Carer's Allowance. To get the benefit the cared for person has to be on the middle or high rate of Disability Allowance for care (i.e. considerably disabled) and the carer has to be caring at least 35 hours a week. I did a quick tot up this morning and worked out that Son 2 needs a minimum of 80 hours a week care in term time and considerably more in school holidays. By care I mean that due to his non-existent sense of danger one of us has to be in the same room as him or within earshot and constantly checking. We live our lives in fight or flight mode and after 16 years it is taking a toll on our health. You'll notice that I haven't included night time hours in my calculation, as these vary, but again he needs supervision if awake. Whilst Hubby has always helped out with care in non-work hours, only one of can claim the benefit. If you care for more than one qualifying person, as I did for a few years, you can only claim the benefit for one of them.

We can cope with Son 2, just, but he is not as challenging as many severely autistic children. We were lucky enough to get specialist educational help early on which has helped his ability to cope a little. Hell no, we got that help because I, as his carer, fought tooth and nail for it. Carers are constantly having to fight bureacracy and advocate for the person they care for. In the next couple of years the process will start again to find adult services for him and I just don't know how I'm going to do it. Like so many carers, the constant battles have taken all the mental and physical energy from me.

Through his late son, David Cameron has personal experience of disability and being a carer. I really hoped that this might just feed through into policy, but instead the government seems intent on dismantling financial and practical support for disabled people and their carers. Please read this blog post by Catherine Hughes for lots more insight and links on disability cuts.

Life sucks.

Disability benefits and the Budget

Yesterday's Budget has shown that the current Government does not understand the nature of disability or the purpose of Disability Living Allowance. The proposed changes will potentially have a wide ranging impact, especially for families of disabled children and anyone with a hidden disability or one which varies from day to day (such as MS).

DLA is not, and never has been, related to the ability to work, which is covered by Incapacity Benefit (now Employment Support Allowance). Instead DLA might contribute to the cost of special equipment, of having to take taxis, of replacing household items broken by a challenging child. It might help with the cost of a cleaner or occasional carer. The money (and associated Carer's Allowance) might enable a parent to stay at home to care for a disabled child for whom finding childcare would be very difficult. People perhaps assume that all these things are automatically provided by the NHS or Social Services. Well no, they're not, in fact most disabled people don't even have a social worker. The other truth of the matter is that many people who should be entitled to DLA don't even claim, either because they don't know about it or find the form-filling too complex.

I could write a huge blog post on all this, but Anne Wollenberg has already done so in this excellent piece for Comment is Free for the Guardian. Read it, please.

Frankie Boyle - social media strikes again

I've held back from blogging about this for a few days, because it's a subject upon which I know that, due to my family circumstances, I might not always be objective. But having given it thought over the weekend, I'm now sure about where I stand.

On Thursday morning I logged into my Twitter feed to find that a blog post was being retweeted. I duly read the post and was horrified.

We have watched Mock the Week for a long time and I'm well aware of Frankie Boyle's humour. He is the sort of comedian who takes his material right to the boundary of bad taste and often beyond it. Sometimes he makes me laugh a lot, but just as often he makes me squirm in discomfort. So I wasn't really surprised to read that he thinks that making a string of jokes about people with Down's Syndrome is acceptable. That laughing about people who will almost certainly neither understand the jokes or be able to fight back is acceptable. To me it is definitely not.

But perhaps what shocked me most of all was the way he treated the blogger and her husband, the fact that he said he didn't 'give a f*ck' that his material had upset her, even after she had calmly explained why.

The power of Twitter worked, as it did in the case of Jan Moir's remarks about Stephen Gately. The story was soon picked up by the mainstream media. India Knight wrote an excellent column in yesterday's Sunday Times. A blogger who just wanted to make sense of a confusing situation was plummeted into a media whirl she neither wanted nor expected. But hopefully it has made at least a few people think.

I wonder if Frankie Boyle gives a f*ck now?

Taking pleasure in small things

This week my lovely mentor Caroline blogged about why she gets so excited about 'little' things. I'm not going to paraphrase her moving words, if you haven't read the post and the lovely comments that followed then please do.

And it got me thinking. As parents of children with special needs, we too have to learn to celebrate the smallest of things. Son 2 should now be approaching his GCSE exams, yet as we sat in a meeting at his school yesterday, we were asked to celebrate the fact that, just occasionally, the teacher can get him to focus on a task for up to 30 minutes. He should be planning for sixth form and university, instead it was hinted that due to his lack of engagement he may not qualify for short term funding at a residential college when he leaves school, something on which I had been planning.

But hey, you know it's fine. Because ever since he was one we have had to adjust our expectations. We have learnt to take pleasure in his small successes. Every year he does make progress, even if it is entirely on his own terms. Before the meeting he had filled in a sheet, by selecting and sticking symbols, to tell us all what he likes at school and wants to do next year. He enjoys ICT and Food Technology. He wants to do yoga. All of this made perfect sense to us, they were clearly his own choices.

So at the end of the meeting we came out celebrating the fact that in his almost five years at that school he has made lots of progress. He might not, through his own choice, shine at English and Maths, but he is learning life skills which for him are far more important. As the formal part of his education draws to a close the school will be focusing more on getting him doing fun things in the community, something which he often finds rather scary.

We will all, school staff and family, continue to celebrate his every small achievement. It's something that perhaps only those parents who have been there can truly understand.

A visitor

The visit from the Department of Work and Pensions took place this afternoon and was relatively painless. The lady took one look at Son 2 and agreed that his disability benefit can continue to be paid into my bank account, no additional legal documentation is needed. I hope the transition will be painless and that they won't stop the next payment (due after his birthday) as the result of technicalities.

She also discussed what other benefits we might be eligible for since Hubby's redundancy, but I think we are already claiming everything we are entitled to, having already taken advice.

In other news, I am now going down with the dreaded cold, the last member of the family to succumb. I had really hoped I would escape it. And tomorrow Son 2 returns to school. Hooray!

Birthdays

Yesterday we took son 2 to a birthday party. That in itself is a rarity. Son 2 has always hated parties, they are too noisy for him and he can't cope with the change of routine. So since the age of 5 we have just had a low key birthday with cake and candles at home, knowing that his wonderful school have also held a celebration there for his peer group. This is important as son 2 doesn't go to a local school and his classmates come from a wide geographical area.

Anyway, the party yesterday was a swimming party, at a pool son 2 had not visited before. The guests were a mixture of children with a variety of special needs and some young non-disabled siblings. We were really unsure how son 2 would cope, so Hubby and I both went along, Hubby to go in the water with him and me to be on standby watching. But I wasn't needed. Son 2 behaved well, and despite obvious anxiety (he hates the echo of swimming pools) he was persuaded into the water. Although he is a nonswimmer he enjoyed floating around in the shallow end, as he usually does. He even came out of the water immediately when asked, this has not always been the case in the past!

In the party room he sat nicely at the table and ate pizza, albeit with his MP3 player in his ears to block out the sound of chatter. When he had finished eating he announced, in his own nonverbal way, that it was time to go home. But by then the party was winding up anyway and we were able to head for home, feeling proud of our son's success in coping with a new situation. In an environment where he was accepted for exactly what he is, he produced behaviour which would not have been too out of place at a mainstream party.

While we are on the subject of bithdays, Casdok's son has just celebrated his 21st. Please take the time to read her beautiful post reflecting on his coming of age.

Mummy blogging

Despite the strapline of this blog, I have never really intended it to be a 'mummy blog', so I was interested to read this article about mummy blogging and why people do it.

Parenting is, of course, a huge part of my life and that is why I do write about my family from time to time, but on the whole what gets on to this blog is a fairly sanitised version. I think long and hard about what I want to expose to the world, but even so there are probably a few posts which I would remove from the blog should my readership ever rise substantially.

My real reason for creating this blog was to chart my own progress in moving away from being 'just a mum' and finding myself again. The sense of losing your own individuality is one experienced by many parents, especially parents of disabled children who are perhaps unable to work because their lives have been taken over by educational provisions, behavioural issues and medical appointments. It is a challenge which at some point, needs to be addressed for the parents' own sanity and for me writing has filled the gap and hopefully set me off in a new direction.

I've 'met' lots of lovely people through this blog, both writers and parents of disabled children. But that has been a happy coincidence, I didn't set the blog up to find parenting or special needs advice as I have plenty of friends just up the road who regularly offer coffee and support. Nor did I set up the blog to encourage parenting advertisers or freebies...I have had offers but have always turned them down.

I've been asked why I don't post pictures of my children online, either here or in a 'private' forum. There is a simple answer. Both my boys are, in their own ways, quite vulnerable and it is my job, as a parent to protect them. Now that is not to say there aren't pictures of them online. Son 1, like every teenager, uses social media, but there he is control of his own images. We have on occasion given permission for a charity to use unnamed pictures of Son 2, both in print and online, because we know they will be used with integrity. Having in the past been the subject of online nastiness, even from people who should be supportive, I don't want to expose my children's identities. I may be paranoid, but we are quite a private family in many ways.

So if you are looking for a true mummy blog, there are many bloggers out there covering both special needs and regular parenting with a depth and humour you won't find here. My kids will continue to pop up on the blog but I'm starting to wonder if it is time to change my strapline...

Bad times, good times

The bad news first.

A week ago I was diagnosed with multiple sclerosis, an incurable condition with an uncertain progression and prognosis. It wasn't a surprise. I have been feeling 'not quite right' for maybe eight years, have had various tests, with minor symptoms being attributed to stress or the side effects of drugs. All of this seemed perfectly reasonable at the time, I have no complaints about my medical treatment. But this time I had tingling in my face, my GP suspected MS, was honest enough to say so and refer me on. That was at the end of June.

After a more recent week-long convoluted story involving two hospital A&E departments and an MRI scanner, my consultant neurologist broke the news. I was just thankful it wasn't a brain tumour, which was the other possibility. At the moment I have severe double vision, because the muscles in my eyes are not working together. I can't drive, I'm walking with a stick, feeling very weak and wobbly, and I need patched glasses just to function. I know this is just a bad relapse, part and parcel of MS. I am already better than I was, it should all improve further with time.

But all this was forgotten yesterday when my Open University results came out. I got the grade I had hoped for in my Advanced Creative Writing course, not a distinction but the next best thing. As a result I am now the proud owner of a Diploma in Literature and Creative Writing, as well as an Open Degree with 2.1 Honours ( due to the eclectic mix of courses I have studied I can take this as either a BA or BSc. I think I will go for the BSc, despite the strong creative writing content, as I already have a BA!)

There is a wonderful symmetry here. I initially joined the OU ten years ago to study one course in Health and Social Care, in order to better understand the systems we would be fighting because of son 2's autism. I had no intention of going on to do another degree, but due to my kids' special needs over the last four years I found myself stuck at home with a need for distraction from a lot of stress. I went back to the OU and found a new direction and validation with the OU creative writing courses, making a dream into a reality. I have learned so many practical writing skills, I have been published and I will continue writing, not just as a means of one day hopefully perhaps making a little pocket money, but above all to enjoy a 'career' which can fit around not only my role as a carer but now also my own future health needs.

I hope the best is yet to come.

Coffee mornings

Oh dear, another week has passed with no blog post. I've been busy catching up after the half term and there was really nothing to say.

I may have forgotten to tell you that I finished the OU Introduction to Counselling course a few weeks ago. The official results will be out later this month but, as there was no exam element, I already know I will have passed.

It was an interesting course and parts of it will be very relevant to my voluntary work at the support group coffee mornings I have helped run for many years. Although we are all volunteers, we represent a major national charity and therefore we have to be as professional as possible. The listening skills learned on a counselling course, even a largely academic distance learning course as mine was, are invaluable. It is not rocket science, these are just the basic communication skills that many of us will have been taught as part of employment over the years, but a refresher is always timely.

We don't pretend to be trained counsellors, we are not. In any case, our branch can also offer a proper counselling service with a professional counsellor for those who need it. But we have to be able to listen to parents who are often distraught after receiving a diagnosis of autism for their child. We have to be able to offer practical information without seeming patronising. We have to forget that we have answered the same questions so many times in the past and not lose patience. We have to remember not to keep bringing the conversation back to our own child. We have to make our members, especially newcomers, feel welcome and to do so we have to gently discourage cliques and attention hogging.

It can be hard to support others when you are going through difficult times yourself. The experience in our small team is that at any particular time at least one of us will be dealing with some sort of family crisis or transition. At these times we may step back and let others cover to allow a breathing space. But because we believe we offer a valuable service, most of us return. I took last year off and just attended the meetings to receive support myself, but I'm back doing more this year.

If I can help just one other parent, it is worth the effort.

Following on ...

...from yesterday, I like this article by Libby Purves.

School was back today, after a week of half term and three staff training days. So how did I arrange to spend the day? Attending a National Autistic Society branch committee meeting this morning and giving a talk to parents of newly diagnosed children this evening!

Brightening a sad day

Today has been a sad one in the world of special needs and I would like to send my condolences to David and Samantha Cameron on the death of their beautiful son Ivan. The loss of a child is something no parent should have to bear and as someone said on an internet forum today, we will all be hugging our children a little closer tonight.

But the day has been brightened a little by receiving this Best Blog Thinker award from Sue Guiney. Thanks Sue!



Now it is my turn to pass it on. As my blog is about both special needs and writing I would like to pass it on to bloggers representing both areas. So firstly I give it to Casdok at Mother of Shrek, for probably the best blog on autism I have read. Secondly I would like to give it to Graeme K. Talboys at grumblog, whose wisdom has influenced my writing over the last couple of years more than he probably realises.

When is inclusion not inclusion?

According to the Daily Mail, the BBC has received nine complaints about new CBeebies presenter Cerrie Burnell, who has part of one arm missing from a birth defect. The complaining parents apparently claim that she frightens their children, but what are they doing to take this wonderful opportunity to educate their children in diversity and disability? Nothing, it appears, except pass on their own prejudices.

Disability is a fact of life. For far too many years it was hidden away, but we have moved way beyond that. The education system in the UK positively encourages integration. In any school in the country you will find children with disabilities, both obvious and hidden. So these toddlers who are being 'frightened' will encounter disability elsewhere soon enough. Children are very accepting, they usually only need the simplest of explanations that another is different. It is so often the adults who are not understanding.

The BBC does a good job of showing disability, from Something Special and Balamory on CBeebies, through various mainstream disabled journalists and presenters...Frank Gardner and Gary Donoghue on the BBC news, Ade Adepitan on CBBC to name just a few. None of these appear to be there as a form of PC tokenism, but rather on account of their ability to do the job well. I know, from having met staff who run the CBeebies website, that they also have a strong commitment to make it as disability friendly as possible and welcome suggestions to improve it.

Back in the 1960's my father, as Head of a tiny, three teacher village school, appointed a teacher with one arm. He realised right from the start that there might possibly be one or two things this man would find hard. But he had a track record as a teacher, he was even able to teach football which my dyspraxic father couldn't, in fact there was very little he couldn't manage. The children were not in the least frightened or traumatised and it must have taught the children of that isolated rural community a very important lesson on diversity.

The BBC must continue to show and praise disability. Perhaps it should also make some programmes to educate those ignorant parents too.

Update: The BBC has a very perceptive piece on the whole storm in a teacup here.

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.'

Argh!

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.

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.)

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.

College

Where does the time go?

In the last week I have spent a lot of time running around with Son 1 and I am pleased to report that he is now enrolled on a college course starting in January. This morning we collected his college ID, we got photos done for his new Oystercard (it has been costing us a fortune since the end of September when he no longer qualified for student discounts). We also bought him a new winter coat, as he got freezing cold when out having teenage adventures last weekend (don't ask!) and his old coat seems to have been lost when he went into hospital earlier in the year. It is amazing how far he has come since then.

I'm drowning in screenplays for the OU course, as our next assignment is to write an adaptation of our previous story for stage, radio or film. I have decided to do film, so am busy reading around the subject. There is a lot of work in this section of the course, but I am determined to keep up as best I can, even if I have to ask for an extension of the assignment deadline. I also have an assignment due in soon on my counselling course and am well behind on the reading for that. Eek!

Three notable things:

1. My mother had an MRI scan on Sunday. We hope this will provide some answers to her currently unexplained neurological symptoms.

2. Mother-in-law is having a short trial, arranged by social services, of carers going in once a day to keep an eye on her and make sure she eats. I hope she will allow it to continue, but she has Alzheimers and always was strong-willed, so who knows?

3. There is a lot of debate in our borough at present, as to how funding for 'breaks for carers' can be best used. I was invited to a workshop day tomorrow and much as I would have liked to put forward my views I have declined because I just don't have the time. I have talked with someone who is going and has a similar interest in the subject, so I know our needs will be represented.