The most moving, magical and beautifully honest films and books I've seen and read have all been ostensibly aimed at children. I am currently in pieces after re-watching Bridge To Terabithia
I recently watched another of my favourite films, A Matter Of Life And Death and have always felt that there was one major flaw to the story. I have never been able to understand why a willingness to die for someone proves your love for them.
Jess in "Bridge To Terabithia" truly knows what love is: He grieves, but he doesn't put his life on hold because of the dark, gaping hole that threatens to fill it. Instead he takes all the joy and beauty that Leslie brought into his life and passes it on to his little sister. There can be no better tribute.
A book that addresses grief, and that you might pass by because it's "a kid's book" is The Heart and the Bottle by Oliver Jeffers. This has the dubious honour of being the first book to ever make me cry on public transport. It covers the themes of love, joy, wonder and the loss of these with a subtlety and simplicity that is often missing in books aimed at adults. It will break your heart and mend it again in the space of 32 beautifully illustrated pages.
Thursday, 30 December 2010
Wednesday, 8 December 2010
Assessments
This morning we went to our younger son's school to talk to the professionals who have been involved in assessing him over the past year when it became apparent that, although obviously bright, he was struggling at school.
They were lovely. For every difficulty they discussed, they gave an example of something he had done that was positive. I couldn't help feeling that they were avoiding saying what their conclusions were until they had observed our response to their account of his assessment, so decided to help them out by being the first one to raise the idea that he might have asperger syndrome. I also said that I was unsure, as there was a distinct possibility in my mind that he was showing "learned behaviours" from his older brother, who was diagnosed with autistic spectrum disorder at an early age.
Their relief was palpable. They said that their assessments were pointing towards a diagnosis of aspergers and that, with our permission, they would put his name forward for a more definitive assessment which could lead to an official diagnosis, but that the waiting list for this is currently three to six months. We gave them that permission. To be honest, I can't understand why anyone wouldn't in our position, knowing what we already know.
It was different first time around. That time I felt that it was my fault. MY failure as a mother. MY choice to give him the MMR. MY job to "fix" him without his needing to be "labelled." I now know that MMR had nothing to do with his autism, but I wasted precious time worrying that I was responsible, because I was the one who took him for his vaccinations.
I never thought I was wrong to vaccinate; I would do it again, even if a link was found, because autism is not a death sentence. Autism is not, of itself, a bad thing.
So, although I don't feel as heartbroken, bewildered and wretched as I did first time around, because I now know so much more about autistic spectrum disorders, I am sure that over the next few days, the tears will come. Not tears of despair, or anger, or self-pity but tears of grief for the "normal" child I've lost, despite the fact I never really had him. And I hate that I feel that way, but at least this time around I know the feeling will pass, because in reality nothing has changed. My bright, funny, enthusiastic, sensitive child is still the same as he ever was and no diagnosis will ever change that.
They were lovely. For every difficulty they discussed, they gave an example of something he had done that was positive. I couldn't help feeling that they were avoiding saying what their conclusions were until they had observed our response to their account of his assessment, so decided to help them out by being the first one to raise the idea that he might have asperger syndrome. I also said that I was unsure, as there was a distinct possibility in my mind that he was showing "learned behaviours" from his older brother, who was diagnosed with autistic spectrum disorder at an early age.
Their relief was palpable. They said that their assessments were pointing towards a diagnosis of aspergers and that, with our permission, they would put his name forward for a more definitive assessment which could lead to an official diagnosis, but that the waiting list for this is currently three to six months. We gave them that permission. To be honest, I can't understand why anyone wouldn't in our position, knowing what we already know.
It was different first time around. That time I felt that it was my fault. MY failure as a mother. MY choice to give him the MMR. MY job to "fix" him without his needing to be "labelled." I now know that MMR had nothing to do with his autism, but I wasted precious time worrying that I was responsible, because I was the one who took him for his vaccinations.
I never thought I was wrong to vaccinate; I would do it again, even if a link was found, because autism is not a death sentence. Autism is not, of itself, a bad thing.
So, although I don't feel as heartbroken, bewildered and wretched as I did first time around, because I now know so much more about autistic spectrum disorders, I am sure that over the next few days, the tears will come. Not tears of despair, or anger, or self-pity but tears of grief for the "normal" child I've lost, despite the fact I never really had him. And I hate that I feel that way, but at least this time around I know the feeling will pass, because in reality nothing has changed. My bright, funny, enthusiastic, sensitive child is still the same as he ever was and no diagnosis will ever change that.
Tuesday, 30 November 2010
Work life balance
I used to love my job. I've been doing the same thing, with a few slight changes to job title and duties, since January 1996. If I'm honest I just kind of wandered into it. I left school in 1991, during the last big recession, with nine good GCSEs and slightly disappointing results at A-level.
I had been warned off my dream job of teaching by my mum (a primary school teacher) and didn't want to start my adult life in debt without a specific career in mind, so decided not to go to university . The only job I was able to get at that time was working in McDonalds. I stayed there for four years, only leaving when the last of the colleagues I considered a friend left to work elsewhere.
It wasn't the best job in the world, but it paid the rent, gave me my first taste of independence and brought me out of my shell. It also gave me the customer service skills that are a major requirement for my current role. I get annoyed when I hear people say they would never work in a job "like that". It shows no respect for the people who do jobs "like that" and assumes that they are there because they don't deserve any better or can't do anything else.
I used to be proud of the organisation I am employed by and of the work I did. I felt that we really made a difference and helped people when they most needed it. I don't feel that way any more and haven't done for a while now. I've tried new roles and thrown myself into additional duties to try regaining that sense of doing a worthwhile job to the best of my ability, but it just isn't working.
So, do I stay where I am because it's well paid compared to anything else I'm qualified to do and gives me the freedom I need to balance my work and home-life or risk upsetting everyone and everything while I figure out where I want to go next, at a time where work is scarce and competition fierce? I'm too scared to even think about it right now.
I had been warned off my dream job of teaching by my mum (a primary school teacher) and didn't want to start my adult life in debt without a specific career in mind, so decided not to go to university . The only job I was able to get at that time was working in McDonalds. I stayed there for four years, only leaving when the last of the colleagues I considered a friend left to work elsewhere.
It wasn't the best job in the world, but it paid the rent, gave me my first taste of independence and brought me out of my shell. It also gave me the customer service skills that are a major requirement for my current role. I get annoyed when I hear people say they would never work in a job "like that". It shows no respect for the people who do jobs "like that" and assumes that they are there because they don't deserve any better or can't do anything else.
I used to be proud of the organisation I am employed by and of the work I did. I felt that we really made a difference and helped people when they most needed it. I don't feel that way any more and haven't done for a while now. I've tried new roles and thrown myself into additional duties to try regaining that sense of doing a worthwhile job to the best of my ability, but it just isn't working.
So, do I stay where I am because it's well paid compared to anything else I'm qualified to do and gives me the freedom I need to balance my work and home-life or risk upsetting everyone and everything while I figure out where I want to go next, at a time where work is scarce and competition fierce? I'm too scared to even think about it right now.
Sunday, 28 November 2010
Friends
Sometimes even the worst days out can feel like the best, if you're in the right company. I've always been really lucky in my choice of friends; I don't think that there's a single one of them who can't make a bad day good just by being there.
I love you all: old and new, male and female, always around and hard-to-get-hold-of. My life just wouldn't be the same without you.
I love you all: old and new, male and female, always around and hard-to-get-hold-of. My life just wouldn't be the same without you.
Saturday, 20 November 2010
Envy
It's a funny thing, envy. I have so much to be happy about: Two beautiful children, a job that allows me the flexibility to work part-time and a wonderful partner who, even after 12 years together and knowing all of my many flaws, still loves me (and I him).
And I am happy, most of the time. But there are times (usually when life gets really noisy and the strain of dealing with one-too-many autistic meltdowns hits) when I really envy this woman: http://www.youtube.com/watch?v=k7X7sZzSXYs
Don't get me wrong, I wouldn't swap places. I have what I always wanted: a family of my own. But sometimes I really miss having long periods of solitude and the ability to read a book uninterrupted or go out somewhere at a moments notice just because I want to.
And yes, I know that I sound selfish and ungrateful, but I have finally realised that I will never be the perfect parent I want to be, that I am not always a nice person, that I often fail miserably as a family member and as a friend but I'm trying to forgive myself for that because, let's face it, who is? Maybe saying it out loud will make it easier to live with.
And I am happy, most of the time. But there are times (usually when life gets really noisy and the strain of dealing with one-too-many autistic meltdowns hits) when I really envy this woman: http://www.youtube.com/watch?v=k7X7sZzSXYs
Don't get me wrong, I wouldn't swap places. I have what I always wanted: a family of my own. But sometimes I really miss having long periods of solitude and the ability to read a book uninterrupted or go out somewhere at a moments notice just because I want to.
And yes, I know that I sound selfish and ungrateful, but I have finally realised that I will never be the perfect parent I want to be, that I am not always a nice person, that I often fail miserably as a family member and as a friend but I'm trying to forgive myself for that because, let's face it, who is? Maybe saying it out loud will make it easier to live with.
Sunday, 14 November 2010
A good day.
Today was a really good day. These are the days that I want to remember, the ones that I hope will stand out in my children's memories when they look back in later life.
We started with a gloriously unhealthy cafe breakfast. You know the sort of thing: bacon, egg, toast... all dripping with artery clogging grease and, as such, the stuff of small (and not-so-small) boys' dreams.
From there we went for a long walk, taking in the Regents Canal and several small parks before heading off to Henry Wood Hall for an afternoon of music, dancing and making crowns at creative:space
I'm not entirely sure that it wasn't me who had the most fun, although the boys definitely enjoyed themselves. They hardly stopped jigging about for the entire event and really enjoyed the bit where they each got to "conduct" one of the musicians by waving their limbs, wiggling their backsides and generally contorting their bodies into strange and funny poses.
The highlight of the event for me was getting to see the Antonio Forcione Trio perform. Forcione, Jenny Adejayan and Adriano Adewale are amazing, accomplished musicians who are very responsive to both their audience and each other. I have been a fan of Antonio Forcione for about 12 years now, ever since I first saw him play live. His performances are passionate and inventive. Warmth and humour just radiate from him when he is on stage.
The boys were exhausted by the time we got home, but still buzzing from the day's activities. They insisted on keeping their crowns on, so I suggested we wear them for dinner and have a "Royal Banquet." They loved the idea.
Sunday dinner usually descends into something closely resembling a chimps tea party, but they were so pleased with the idea of being Princes that they were desperately competing to see who could be the most considerate, well-mannered and regal.
I cherish days like this. They make it all worth while.
We started with a gloriously unhealthy cafe breakfast. You know the sort of thing: bacon, egg, toast... all dripping with artery clogging grease and, as such, the stuff of small (and not-so-small) boys' dreams.
From there we went for a long walk, taking in the Regents Canal and several small parks before heading off to Henry Wood Hall for an afternoon of music, dancing and making crowns at creative:space
I'm not entirely sure that it wasn't me who had the most fun, although the boys definitely enjoyed themselves. They hardly stopped jigging about for the entire event and really enjoyed the bit where they each got to "conduct" one of the musicians by waving their limbs, wiggling their backsides and generally contorting their bodies into strange and funny poses.
The highlight of the event for me was getting to see the Antonio Forcione Trio perform. Forcione, Jenny Adejayan and Adriano Adewale are amazing, accomplished musicians who are very responsive to both their audience and each other. I have been a fan of Antonio Forcione for about 12 years now, ever since I first saw him play live. His performances are passionate and inventive. Warmth and humour just radiate from him when he is on stage.
The boys were exhausted by the time we got home, but still buzzing from the day's activities. They insisted on keeping their crowns on, so I suggested we wear them for dinner and have a "Royal Banquet." They loved the idea.
Sunday dinner usually descends into something closely resembling a chimps tea party, but they were so pleased with the idea of being Princes that they were desperately competing to see who could be the most considerate, well-mannered and regal.
I cherish days like this. They make it all worth while.
Saturday, 13 November 2010
My child...
My child is strong, long limbed and has a prodigious memory. Never do or say anything in his presence that you don't want repeated back at you in perfect detail at some point in the future (I have learned this the hard way). He also has a diagnosis of autistic spectrum disorder.
He is one of the lucky ones. He has no additional health or developmental conditions, a little brother who worships him and a school that understands the behaviours he displays when frustrated, over-stimulated or just plain exhausted from his frequent periods of insomnia.
The decision to send him to a specialist school was not an easy one, but I have never regretted it. I fear that he would have been excluded several times in the past year alone if attending a mainstream school, as the majority are sadly just not equipped to deal with his behaviours and frequent need for periods of quiet and isolation.
The odds are against getting a place in a school like his. There are very few and, at the time we applied, there were five children competing for the only space. Places at his school are not available every year: They have a maximum number of children across the entire school, not per year, and form their classes according to ability (both social and academic) rather than age. Some children are able, with their help, to move on into a mainstream school, thus freeing up spaces. Many are not.
The actual process of applying to the school is a blur. As well as a recently diagnosed three year old, I was juggling a baby, various specialist appointments, Early Bird classes, imminent eviction from our home and the practicalities of my return to work on reduced hours. All I know is that our key-worker was amazing. She supported us through every difficulty and helped me find the strength to do what was needed in order to get what we wanted.
There are many benefits to recommend a school specialising in autistic spectrum disorders: The various disciplines have a representative on site at least one day a week, these include speech therapists, nutritionists and occupational therapists. There is also a greater understanding of some of the stranger and more aggressive behaviours and the staff are properly equipped to deal with them.
The thing that concerned me most when choosing the school was my fear that he might miss out on the social aspect of his education, something I've always felt was more important than the academic side of things (at least in primary school). I needn't have worried. They have strong links with another local primary and run special inclusion classes for those who are capable of coping.
The support and understanding we have received from the school is immeasurable. They gave my, previously almost mute, child a voice. He is going through a "difficult and angry" patch at the moment and is displaying some very challenging behaviour. Where another school might exclude him on grounds of bad behaviour and disruptiveness, at the most recent parents' evening, his teacher simply said, with a wry smile "Yes, lately we have been seeing his personality come out more."
Although there are some wonderful exceptions out there, until there is the money and the political will to invest more in our schools and teachers in order to equip them to deal with the variety of disabilities and challenges they face daily, inclusion will continue to fail a large number of our children. I feel incredibly lucky that my child has a place in a wonderful school that understands and supports him. I wish many more parents and children could experience the same.
He is one of the lucky ones. He has no additional health or developmental conditions, a little brother who worships him and a school that understands the behaviours he displays when frustrated, over-stimulated or just plain exhausted from his frequent periods of insomnia.
The decision to send him to a specialist school was not an easy one, but I have never regretted it. I fear that he would have been excluded several times in the past year alone if attending a mainstream school, as the majority are sadly just not equipped to deal with his behaviours and frequent need for periods of quiet and isolation.
The odds are against getting a place in a school like his. There are very few and, at the time we applied, there were five children competing for the only space. Places at his school are not available every year: They have a maximum number of children across the entire school, not per year, and form their classes according to ability (both social and academic) rather than age. Some children are able, with their help, to move on into a mainstream school, thus freeing up spaces. Many are not.
The actual process of applying to the school is a blur. As well as a recently diagnosed three year old, I was juggling a baby, various specialist appointments, Early Bird classes, imminent eviction from our home and the practicalities of my return to work on reduced hours. All I know is that our key-worker was amazing. She supported us through every difficulty and helped me find the strength to do what was needed in order to get what we wanted.
There are many benefits to recommend a school specialising in autistic spectrum disorders: The various disciplines have a representative on site at least one day a week, these include speech therapists, nutritionists and occupational therapists. There is also a greater understanding of some of the stranger and more aggressive behaviours and the staff are properly equipped to deal with them.
The thing that concerned me most when choosing the school was my fear that he might miss out on the social aspect of his education, something I've always felt was more important than the academic side of things (at least in primary school). I needn't have worried. They have strong links with another local primary and run special inclusion classes for those who are capable of coping.
The support and understanding we have received from the school is immeasurable. They gave my, previously almost mute, child a voice. He is going through a "difficult and angry" patch at the moment and is displaying some very challenging behaviour. Where another school might exclude him on grounds of bad behaviour and disruptiveness, at the most recent parents' evening, his teacher simply said, with a wry smile "Yes, lately we have been seeing his personality come out more."
Although there are some wonderful exceptions out there, until there is the money and the political will to invest more in our schools and teachers in order to equip them to deal with the variety of disabilities and challenges they face daily, inclusion will continue to fail a large number of our children. I feel incredibly lucky that my child has a place in a wonderful school that understands and supports him. I wish many more parents and children could experience the same.