I realise my posts are a little scarce at the moment, and apologies for the spasmodic entries - I am just swamped with summer holidays and life at the moment, and when I can come up for air, I'll be able to give this blog more time. I would like to get some more photos and video, but all that needs effort, so is on the back burner till the luxury childcare that is school takes over ;)
Things are going brilliantly, and whether it is a summer holiday being full of great things, the boys on good form, Lucie fitting into the family like a veteran, or living with the high of the great Olympics, whatever the reason, I feel full of smiles and optimism at the moment. Our days have been jam packed, and Lucie has experienced so much in the last couple of weeks, helping make this one of the most successful starts to the holidays we have had. We have visited Eureka in Halifax, Camelot twice, cinema twice, taken the kids to McDonalds and so much more. All without any big hitches. A few moments that required deep breathing and the usual calamity ensues, but somehow we are getting through. I think my bar for success is set pretty low, so to others our days out may look a disaster, but to me success is returning home with the right number of children, and a bonus if they are the same ones I left with. If the day did not include an A&E visit, we get extra points. Anything else is magic.
But today I don't want to blether on about summer days out....I wanted to take you way back in time to answer something I mentioned early on in this blog. I said one day I would share with you a little about my life before dogs, before kids, and most importantly before autism changed my world. Life has not turned out the way I imagined it might, and has taken some unusual turns, but whilst in one breath this can feel like my history has become irrelevant, it has in an obscure way prepared me with some essential tools to cope with this journey. So in fear of this sounding like a little Curriculum Vitae, let me tell you my background...
I was born in the UK, but my gene pool is well and truly mongrel. I have an accent that attracts attention and often I get asked where I come from, and that is truly a question I have no answer to...my sister describes herself like a tumbleweed - I know how she feels. No place feels like home to me. My grandparents were Scottish, English, South African and Russian, which gave me a South African Mum and an English Dad, both who liked to travel. I spent my first few years in Indonesia, with periods of time visiting South Africa, and then my primary school years in Scotland, followed by high school years in Cheshire, England. I then did the ubiquitous year out at 17, with round the world travelling through Australia etc. before going to University in Birmingham. My parents finally settled in Chester, and even after 25 years - I am not sure even they think of that as home. It is not somewhere that holds warmth for me. For me home is where I am now, in Chorley, Lancashire. A place chosen after marrying a man from Wigan, who was the most stable and grounded person I had met. We moved to a new house last year, and now I am really settled, and for once can imagine me being here for years to come. It feels right. Until now I think I have strived to always be somewhere different, but now I look around me, and feel calm.
But here I am as a parent carer looking after two disabled children, and that was certainly not my game plan. I wanted the career, to push myself and see what could be achieved if you applied and strived for making a difference. I graduated in Transport Management with a First Class honours, which to this day remains one of my proudest achievements. I was the first student in five years to get a first class result, and it meant everything to me. And how useless it seems now as I change nappies!! I chose a career in Logistics, as a Warehouse Manager, and worked for a great blue chip company on their graduate programme. But soon the whole capitalist money earning career lost its lustre for me. It seemed you work so hard to live someone else's dream. Money was not bringing the satisfaction I had hoped for. In one job I was offered the chance to change from warehouse manager, to the marketing department as Product Manager for B&Q kitchens. Oh boy did I learn a lot about kitchens quickly! I had a huge budget to play with, and it was great fun at times, but marketing is definitely not what I was cut out to be - ask my boss!! She and I have remained great friends to this day, but I am sure professionally she must have raised an eyebrow once or twice at my maverick approach. So time for a radical change.
In my marketing time I had learned about the internet, which was still recovering from the dotcom bubble burst, but it did capture my attention. I used my marketing skills to find what businesses were working well on the net, and settled on lingerie as a good product. So I quit my job, and set up a business selling lingerie on the internet. A big risk, giving up a senior manager position to leap into the unknown, but it was time I started living my life my way rather than the plan I was being trained to follow. So with a £7000 loan, I started out, selling branded items, Charnos, Wonderbras etc, but specialising in hand made to order designer silk nightwear for the luxury end of the market. I loved it. It was scary, rewarding, and challenging. You get to be everything, manager, tea maker, accountant and packer - whether you are good at it or not, you have to do it all. For seven years I ran the business, which was doing well, but finally had to be put on hold when I had Alex. I managed to hold it together while struggling through three miscarriages, then having Thomas, but by two kids, lots of babies crying and me in pretty much a breakdown, life was not compatible with work, so something had to give. So that is the beginning and end of my working life. It is with deep regret my work ended like that. I miss so much working with people, having targets, aims, earning my own money, and being part of something. Now I earn £55 a week on benefits as a carer - me - on benefits!! - I hate it - but that's the state of it, I am not allowed to work more than a few hours on the benefit - but that is irrelevant. I am a carer as I have a full time job looking after my boys, most of all Alex. He doesn't have after school clubs, holiday clubs, babysitters, play dates or anything.....he has me. And whether they are ill, on holiday or have endless appointments, I am the solution, so for now priorities have changed.
I hate who I am now, I hate what I have become. I feel wasted, with no future to look forward to. I can't earn money, so feel complete guilt with every purchase, I have lost identity, no longer having a job, I am now 'just a mum' - that oh so crazy phrase.....and for me it feels this is forever, not just while the kids are young, or at school. When they leave school they will need us more than ever to help them. So on a black day I just feel like slave labour for the government filling the void they can't or won't fill to help us. On a great day I feel like a superhero doing an amazing job that not many people could cut. Most days fall in between the two.
Dave and I spend hours talking about how I can build a future, have another start at work, anything to give us a better chance in the coming years, and help make something of this mess, but everytime it comes back to - so who could look after the kids? And there the conversation ends. We would love Dave to stay home, as he is brilliant with the kids, and nine years older than me, with less long term ambition, but I have been out of the job market too long. No one would look twice at my CV. A 39 year old who changes nappies, and DVD's doesn't count for much in the workplace :)
But is it all that gloomy? Hell no!! What I am really proud of, is that all those years at university, work, self employment, all taught me a range of skills which at a fleeting glance look useless now, but how wrong that is. Every day my children benefit from my skills, and we do well because I have learned some basic stuff that helps me be a great parent carer. I can communicate reasonable well, whether a debate with the authorities, endless form filling and understanding the system, holding my own in a meeting and not being intimidated by professionals, the skills are used daily. I start to see the journey with my kids like a work project that need to be project managed. There need to be clear targets, priorities, planning and assessment. You can't just bumble through and hope everything will turn out okay, you have to take control, have a vision and make a plan. And that is what I do now. That is my job, and most days I think I am doing okay. So whether it is making sure we see the right professionals, working with schools, or embracing life changing schemes such as taking on as assistance dog, all these skills come into play.
So rather like the series Who do you think you are? on the BBC (not an avid fan of it but I find it intriguing), I think the concept that where we are now is a result of multiple outcomes over many years. And where we end up will be entirely our decision. I could give up, and moan - which is not a bad option, and some days quite pleasureable!, but overall I don't. I make a choice, and mine is to make sure we have the very best journey with the cards we have been dealt, and each day I try and keep on track. Mostly I fail, but the wins are massive, and really count. Getting a dog for Alex, for example, one decision, one plan, a lifetime of benefits to be gained. And I get asked ' How do you cope?' Simple - I have one answer to that question - 'What makes you think I cope?' There is no getting this right, and every parent I see is doing a cracking job just getting up each day and loving their kids. But for me, wine, a smashing husband, and an ever increasing circle of fantastic friends make the days work.
So that is me. A muddled up Mum on on a muddled up journey, but feeling pretty good about it.