Friday, 17 August 2012

17th August - A broken Lucie - a sad week.

As if the summer holidays aren't a challenge in themselves, throwing in a few extra dramas is just what we need to spice up life. I have been getting by minute by minute, with military style organisation, and keeping my joints lubricated with rum. And just as I was thinking this summer was going to plan, an accident has thrown us into disarray.

Two days ago Dave took Lucie for a walk before work, and returned ten minutes later saying something was wrong. She had been in the woods, and running toward Dave when she stopped dead. No crying or drama, but came to him, went quiet and stood still. So he brought her straight back. My bleary eyes at 6.30 gave her a once over, thinking she had slipped and lost her footing, I was looking for a reaction to muscular pain or something caught in her pads. No reaction to my poking around, so she had breakfast and looked her normal self, so we decided to watch her, and she had a kip. After a couple of hours, I went to check again, and she was very calm. Again I felt all round her paw, leg, back, hip - nothing, no reaction. Then she tried to lift her leg. I am not squeamish but holy heck I was stunned at what I found. Right up high on her inner thigh was a huge gash, around 3 inches long. No blood,just a big hole, I couldn't believe I missed it, but it was tucked right in, and a furry bit. So straight on the phone to the vet and rushed her down. It must have been a piece of wire or metal rubbish she had run over which caught her leg.

The event would have been fun in itself had my day not already been planned to the minute. Tom was due to leave for a residential break at midday, and I had to pack for him, and fill in some forms, thinking I had all morning to do this, I had not worried. But now I had to go elsewhere, so no idea how I was to get him packed and to his bus in time. Its hard enough to prepare an ASD child for his first trip away, but not even being there to organise, or know if I could get him off was not helping my stress levels. I quickly phoned a lady (ha - that makes her sound 55! she is a spritely 20 something, what term is right these days?) who helps us with Alex a few hours a week - I don't like talking about other people on this blog, as its fine to write all about us, but I don't like to assume others mind being mentioned - but I hope she won't mind me saying, she has been like an angel to us this summer, just her being there to help for a few hours stops me falling through the cracks. I phoned her in a mess, a garbled mush, panicking about how to take a dog and two autistic kids to the vet whilst moving her injured - it was - well - not happening - and true to form she dropped everything, and came straight over to watch kids so I could concentrate on Lucie. Thank goodness I am surrounded by great people.

Lucie was upstairs, and it took a lot of time, and bits of ham to coax her down and then into the car. She is 31kg, and injured, so I could not lift her. So off to the vet. They were a little casual at first, making the same error as me in assessing her, not seeing the problem. I had to tell the triage nurse to stop feeling around, as she may hurt her soon, and stand back and look - when she did, I could see the shock on her face. Quite. Me also feeling slightly queasy now. The vet jumped into action, and said to leave her while they started to stitch her up. At least now I could get home, and get Tom ready and off on his trip.

Later that day picking up Lucie stressed me more and my feelings and reaction over a dog surprised me. I straight away realised how close I have got to Lucie, and how much her work with Alex has meant to us. She is so much more than just a dog. Alex waited in the car with the lady, so I could deal with Lucie. She looked so bad, disorientated from sedation, a big horrible cone on her head, shaved and stitched. Our poor baby girl. And they casually say leave her like that for two weeks till the stitches are out. And then it occurs to me. Our family holiday is starting on Tuesday, our only break this year, just driving to Warwick, and visiting my sisters - but still our version of a family holiday. I realised at that point how much Lucie had become an important part of our lives. I immediately had thoughts rushing through my head of all the things which would now be hard without her, our holiday in disarray, seeing her in pain - it all hit me. I could feel the tears were not far off - and even a £200 bill didn't cause me to flinch. I just about got her back to the car, and then the reality of Alex kicked in. He saw her get in the car and went ballistic. Screaming, kicking, crying. I don't know what was worse, seeing her not moving properly, dazed, or the cone on her - whatever it was it took nearly half an hour for him to calm down. I realise quickly it is not just me who has come to accept Lucie as such an important part of our lives.

So back home now and settled. I immediately discarded the cone as Lucie could not sit and was very stressed. I have ordered a fancy one from the internet made of spongy stuff that is more comfortable. Its crap enough feeling sore, but no need to be uncomfortable too. And so I had to sit with her the whole time to make sure she left her wound alone. She just cried and cried, it was tough. I've never seen her ears low, tail still and whimpering.

The 'family support worker' - a sort of social worker - was due within the hour, I thought of cancelling, but hey - this is our life - who's to say tomorrow will be calmer?! So she came and sat on the floor with me chatting :) And bit by bit things are getting better. I knew, like kids, she would bounce back with astounding strength. My sister reminded me I may have more problems when she is back to strength, but still need to take it easy. Two days later I am delighted to see her tail wagging, walking round the house and greeting visitors. Alex has been fascinating, bringing her toys from her box, stroking her, really interactive. I am sure he knows she is unwell. Go figure - this autism dog support role works both ways - it seems they get to look after each other. I have no idea what will happen for our trip, and what the plan will be, but will know more after the next vet check up tomorrow.

I am sure any of you with animals have been through all this and more, and I do sound all very operatically dramatic with my reaction to a straight forward injury. But it really has surprised me how much one hitch can affect us, both in how we feel for Lucie, and the impact on our lives. All the panic thoughts of what would happen if it had been worse, cut her in the torso, or been more severe, made me realise how close we are to losing her as a working dog, and that scared me. And whilst the next two weeks will be tougher for us all with her out of action, the really warm feeling is that it is pure affirmation of how much she has helped, and works. A reminder of how important an Autism Assistance Dog is.

Monday, 6 August 2012

6th August - Who do you think you are?!

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 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.