Monday, 24 September 2012

24/9 A privilege to share....

Today I had a great privilege to share the story of my boys with over 200 people. And not just any people, the most important ones - our future educators. Teachers trainees about to embark on the scary world of employment which moulds our childrens brains and determines their outcomes.

A couple of years ago I felt I was meeting too many parents of SEN kids, who felt disconnected with the world around them, and a disgruntled feeling of being misunderstood. And nowhere can this feeling be more problematic than if it is with your childs school. But not being someone who can moan without taking action, it occurred to me you can't complain no one understands you without you doing something to help them. So I set about to write a presentation which gave an outline of what autism is, how it affects my children, and share the impact it has on our family. It was an opportunity to share what goes on behind closed doors, and explain how it feels for me to be a parent of two boys on the autistic spectrum.

Two years ago I did my first presentation in my sons primary school, and from there it escalated, and have since been invited to talk not only to many schools, but also to professionals, health professionals, childrens centres and carers staff, and more regularly now for PGCE students at two universities. It has been a really wonderful experience being able to discuss things that can often feel taboo, or too personal. But it seems I no longer have any secrets (well - maybe just the odd one!), and if sharing my story can help others approach another child with a more enlightened approach, then it will be worth every minute of my time.

So today I had the really wonderful opportunity to go into a University, as part of a Special Educational Needs conference and talk with a large group of people who will next year be out in the world of work making a difference. And if speaking to so many people puts the fear of - well - scares the bejeebers out of me - it is nothing compared to the challenges my boys face every day. They have bravery I can only admire, and so make sharing our family secrets with strangers seems easy in comparison.

So over the years I have now spoken with many hundreds of professionals and students, and little by little go about the ambition I have of raising autism awareness, and with any luck maybe our story will help someone else when you least expect it.

Today was also Lucie's first day with me doing a talk. She had perfect patience listening to the lethargic tone of my voice going on. And she is part of the optimism we now have on our journey, so was a great addition for me to share that new chapter of our life into the presentation.

I suppose where I am coming from is wherever there is frustration at ignorance it can sometimes be up to you to ask how you can help to fill that gap. It has been a great experience for me learning to talk in public, facing my fears, and in many ways very cathartic. What do they say - a problem shared is a problem halved? Well in that case, sharing has been great, and always so pleased to see people eager to learn more. Great opportunities come from the most unlikely places.

Monday, 17 September 2012

16/9 Sweet relief

I am loving September :) It feels like all the little pieces are falling back into place. Despite the relentless drizzle and autumnal weather setting in, it feels a whole lot more sunny to me. Lucie is back on full form following her ordeal over the summer, and her cheekiness is back with vengeance. After a few weeks of restricted walking, she has gained a few pounds, so we are upping her exercise routine, and she is responding with vigour. I keep thinking I will find her limit and she will say, yep - tired now, can we go home? But not found it yet, even a 2 and a half hour walk still kept her in full spirits - guess those legs needed stretching! But mine do to, so its a win win. She is doing great with her work, and last week earned every second of her worth in a tricky moment.

I had to pick up Tom from school and needed to take Alex, so we walked down, with Alex attached to Lucie. Its a country lane on the way, so not a walk I would have been able to take Alex on prior to Lucie. Alex decided to launch towards a passing vehicle and tried to grab its tyre. He has always been attracted to moving vehicles, loving the motion, but when you least expect it he throws all his weight into a lunge to grab the car passing, or throw himself in front of it. With two kids and a dog my attention was split several ways, but did manage to react in time to stop Alex getting a hold, but what was fantastic is that Lucie totally held her ground. Without her attached to Alex, it would have been a very close call with the car. She gave me the extra pair of hands I needed, and the lead length meant Alex couldn't quite make contact with the car. Lucie knew to stay with me, and we reigned Alex back, with my heart thumping hard. You can go for months without Alex leaping into a car, then out of nowhere he decides one looks good, and you have a split second to make sure you can control him. We have had some frights over the years, but now with Lucie, I have a little more help, which may just be the difference between a scare, or a real problem.

And so when I occasionally get asked 'is it worth it?' I suppose yes, there is a whole lot involved in taking on a dog - but if you asked me five minutes after that incident, yes, every day it is worth it to keep Alex safe. A real moment of sweet relief.

And so now normality creaks into place. Each day I get a little closer to feeling I am moving forward. I am doing lots of jacket work with Lucie at the moment to prepare for my big test in November. I can't wait to get rid of my 'In Training' lead and jacket, which I hope will finally put an end to endless 'Aww - look - a guide dog in training!' Mind you - even when Alex is attached people say that, so I am not sure if they think he is in training too! I look forward to a time when people see a labrador can mean more than just a guide dog. Till then I will smile sweetly and shuffle on. After the test, our label will say Autism Assistance Dog. It will be interesting to see what interaction that brings with people. All in a label... I had to smile this week when a couple of old ladies stopped me with Lucie while she was working and said, 'You have an assistance dog'. Statement of fact, no question or comment. Err - yes, I replied, thinking - well I am glad you let me know as I wondered why she was following me around :) Honestly, a knack for the gotta love the public :)) I was just loving the Paralympics this summer, taking a huge leap forward in normalising differences between people, and celebrating such astonishing achievements. I think Britain just took a big step in the direction of understanding and have always been good at it, maybe we are catching up.

Saturday, 1 September 2012

01/09 If you don't have anything nice to say.....

You know the phrase, "If you don't have anything nice to say, don't say anything at all"? I think I have realised that is appropriate for communication with the outside world. A blog is sharing experiences and feelings, and when those are warm and fuzzy it can be a pleasurable pastime. But when those feelings have a sour and moaning undertone, then they seem best to keep to yourself.

It has been a long hard summer, and we are now in the last week. Tom goes back on Tuesday, and Alex on Thursday. I am not even counting the days, as right now I just feel numb from the assault and battery that is described as 'holidays'. Holidays in essence to me are just round the clock on duty with every challenge you can throw in the pot. So coming on to post about our days, or even our week away with the family has been something I have avoided. A bit like Facebook - everyone shares in different ways, but I am definitely a poster who if you haven't heard from me I am burying my head in the sand til the storm blows over.

Now of course in the reality and truth bit - every family bumbles through summer in a chaotic way, using survival techniques that would not look out of place in a war zone. And of course it has not been hell, there have been some wonderful days and moments which are strongly embedded in my memory, but the overall feeling seems to be don't move, hunker down, wait till normality and routine return and then I will relax enough to open up again.

The last time I wrote Lucie had a terrible injury, and now over two weeks on she has healed really well. Having her poorly was a difficult challenge emotionally and strategically, and is another reminder of what is involved in the commitment. I am so pleased to report she is back on full active duty and playing like a two year old should. There was a small incident with the 'vet' which means after that episode I will be seeking another establishment.....I live in vain hope that people who are rubbish with people may be compensating in their good care of our animals, but not a risk I am going to take with that more than odd vet! But net result is we have one patched up doggy who has learned that strange things do indeed lurk in the woods.

And in between the vet visits we also managed a trip south, visiting Warwick Castle which included the boys first stay in a hotel and going to a restaurant, and afterwards staying with family for a few days, which was much more conducive to a holiday. The absolute highlight was visiting Legoland Windsor. One of the best - if not the best - family days out ever. It was exhausting, had its challenges etc, but presented us with moment after moment of unbelievable pleasure watching the kids just immerse themselves in the fantasy world of lego, shows and rides. On several occasions I was near tears watching them in full vigour enjoying the spectacle around. And their enthusiasm rubs off, watching Alex giggling is contagious, and Tom was ready to move in to Legoland, so the staff were equally enjoying their response, and were so lovely to us. One day - when I can figure out how it can be done I would love to take these boys to Eurodisney. Legoland was a day I will hold on to for a long time.

And as much as there was highs, oh boy, there was lows. I am not even going to share the disaster of Trentham Gardens just yet, and I think the echoes are still ringing South of Birmingham in some of the meltdowns we contended with, but the brain is good at suppressing memories. On the plus side, we did manage to gain so much attention, I think I will look into establishing a side business of selling tickets to view our family as apparently they will sell like hot cakes given crowds we can gather. Less said about all that right now the better.

And so today September takes hold, and that feels weird. After a summer of practically no sun we embrace for the autumn to take hold. I dare not think of school just yet, and next week is a long way off, though I am due a telling off from Dave, as I haven't looked to see if the kids uniform has any chance of fitting. For me September means different things, time to think about a diet, drinking less and getting my routine back. I have a 'to do' list that looks shameful, and some rather nasty things I need to face. And with regard to Lucie, after the last few weeks, I want to now return to some more formal work on my own with her, taking her out in the jacket. I have felt things slip as I have been stretched and we have all stumbled through, so a few command things need tightening up.

And so a new chapter starts to unfold. We have been in our new house exactly one year this week, a new school year starts, and to kick it all off it is Alex's birthday on Saturday, so we will endeavour to bring out some of his best giggles. I feel a session of cupcake baking coming on....mmm......