Friday, December 31, 2010
Autism obviously was at the forefront of everything I did over the past twelve months, I can't even begin to summarise here the impact this handicap has had on my life. And that's just my life. My perspective is exactly that, mine. There are hundreds of thousands of parents, children, aunts, uncles, cousins, nieces, nephews and so on affected by Autism all over the world and through the site and this blog they came out of the woodwork to contact me and share their stories. From Australia to America, Poland to Scotland (and most places in between) it was evident that many had, just like us, to overcome the grief that is part of discovering your child may never be the same as others. And even once you have reached acceptance you have to then knuckle down and do the work, the long road of finding professionals to advise you and treat your child, the endless paperwork for financial assistance, the tensions in the family unit when all you want to do is have a break from it all. But sometimes you just don't get to have that break. Pearl is lucky to have her team and they must be named and thanked, so to Gregory, Virginie and Celine I am beyond grateful for your smiling faces and enthusiastic demeanor, without fail you guys put your all into helping my little P. You are more than hired help, you are like family.
Some of Pearls milestones have included her continued developments in language, she may not be able to string a sentence together but her repetition and counting abilities are a world apart from the beginning of the year. She has adapted to school with neurotypical kids of her own age and even though her assistant decided to quit three days before the Christmas holidays (thanks lady for leaving us in the lurch) I know that its only a stumbling block that has a solution waiting to be found. She has also become more cuddly and will respond better to commands (when it suits her I must add) when it comes to crossing the road and little things that I took for granted with Dylan. I love my daughter dearly and even though sometimes it can feel like one step forward and two back I spare a thought for others who are far, far worse off than us. For me, dealing with Autism is all about perspective and patience. Sometimes I have both of those attributes in spades, other times I feel like I am backpedalling. But I know that all I can do is my best and once the fire to continue to help Pearl and as many families as I can along the way is still burning, then I know I can always go further than I imagine.
The same can also be said of my great passion for Running as this past year I found myself in the deep end, reaching for goals I thought were not within my grasp, mixing it with some amazing athletes being the great honour of each competition. I have made so many friends both through racing and the Internet and the camaraderie is just astonishing. The one thing that struck me the more I became immersed in this running world was the openness. Regardless of ones ability, age, creed, origins etc everyone is welcome to the party. That may not seem like that big a deal to some but to me, looking at a world that can at times be quite intolerant, it is everything. We have been runners since the beginning of time so getting back to that primal feeling exhilarates me beyond words. I managed to finish my first 100km race in May and as the last 15 km's approached I wanted to pack it in. The emotional journey of those last 15km's will never leave me because I had to draw on all I had mentally to make it to the finish. I had great results (for me that is) in some other tough races ranging from 30-50km's and tackled my debut 24hr race also. It's been said (by whom I don't know;) that when you are facing down a challenge like this its just you and yourself out there. The battle for me is never against anyone but myself. I have to prove nothing to no one, I am my own pilot. It's not about how long it takes me to get across the line, its about the preparation it took to get to the start line in the first place. It's about getting up at four a.m. on a winters morning and putting in the distance, or heading out late at night with a head torch as the sofa whipers "Mally, come over here, sit down and watch some TV". Its doing it out of love for the outdoors and not taking the easy option. Its about doing something with passion and never quitting.
I will leave you with some photo highlights of the year gone by and I wish you all a truly safe and fulfilling 2011. I know that the word "limits" will not be part of my vocabulary next year or any other year.
See you round the bend.
Monday, December 20, 2010
It is always a joy to post an article or a video involving Tony Krupicka. Whether it's watching his effortless ascending of the alpine or his unique style (his heels never seem to touch the ground) he is symbolic of the true meaning of what it is to be a natural athlete. He is also a darn good writer and if you are a running blog reader then I think you will not find better than his, his race reports are always in depth and revealing. You can read his own blog which weekly documents the incredible mileage he accumulates or check out his musings over at Running Times.
I really enjoyed this particular video as Joel Wolpert captured the atmosphere beautifully and provided a really pertinent understanding of the Colorado winter. All in all a nice piece of impetus to get one out on the snowy trail, not that I need much convincing today, now, where did I put that head torch.
Friday, December 17, 2010
But, alluding to the title, I now know that its not about wishing for things or for circumstances to change whenever the road becomes rocky. Its about pausing and really taking stock of all that you have, sure there may be some who can count more blessings than others but it still about looking for the positive. Knowing too that what we see in other peoples appearance never truly reveals whats going on below the surface, call me twisted but I take comfort in that. I take comfort in it because it shows me that everyone is the same deep down.
See you round the bend.
Monday, December 6, 2010
Friday, December 3, 2010
Well, well, well its been quite some time since we posted some news and that has been because of many factors. The number one being how busy we have been since the end of our holiday season. On our return from the south of France we hit the ground running, please read on and check out what we have been up to.......
The kids schooling was the number one priority after a few weeks spent basking in the sun and savouring some much needed downtime in Carnon. Alicia's cousin Johann came with us and kindly looked after the kids whilst she kicked my butt every morning on the tennis court. John McEnroe I am not. It was very enjoyable and after Pearl had settled in to her new surroundings (it took about 3-4 days) all went swimmingly, sorry for the pun.
But as I mentioned schooling was tackled with gusto after our break. Dylan was changing school and was going to be swimming with the big fish, no more free ride at little school no, no, no. Big time changes for him and for us too. He handled it well apart from the fact that he now had a satchel to carry with all his new books and stationery, the fact that homework was now part of the equation didn't sit well either. But as with all things new a period of adjustment is essential and he, as usual, has astounded us with his ability to fit in and knuckle down. As I write this he is eight days away from his 6th birthday and he is also busy compiling his Santa list. The new craze of "BeyBlade" being the current obsession, boys will be boys eh?
The change for Pearl proved a little more difficult but the rewards are beginning to show. Pearls A.V.S. (schooling assistant) could not start at the beginning of the term as she was committed to finishing her previous contract. So we put her in the creche that she previously attended for the month of September and the timing was quite serendipitous in the grander scheme of things. She really benefited by starting the school year at a place she knew and with people who treat her so well and understand her ways. She dealt with it OK and as is always the way with Pearl routine and time to settle in are key. Come the end of her four weeks it was time to leave the creche and head to "La Martenelle" which is beginners school for infants. I can tell you that for her first day chez nous was a a hub of nerves. How would she adapt, would it be a success? All of these questions running through our minds and the only answer was to just get stuck in. The idea was to wade in slowly. The first week would see her spend fifteen minutes on Monday and then increase her time daily in fifteen minute increments. She would not settle at all the first week and the crying and screaming each morning was just so hard to bear. But it did improve little by little and once she became familiar with the staff and the noise, lots of noise, it started to take shape nicely. That was until she started to regress and the sight of a photo of her teacher (from her visual timetable) would start her grunting and shouting her disapproval. This over course kicked in once she was attending her requisite three hour mornings, four days a week. As Alicia said "the novelty has worn off and she realises this is the way its going to be" But in fairness to the little mite she seriously turned a corner in November. The staff seriously upped their game regarding their knowledge of all things Autism and Pearl found her rhythm. Now dropping her off is a delight, she shouted "Ah Yeaaaahhhh" this morning and it brings a smile to my face as well as the amazing crew at her school. It has been a new challenge for them too and the school directrece Marie-Clarie, her AVS Marie-Blanche and her Monday teacher Caroline have excelled in making her feel part of her new class.
In other news we have been seriously on the backs of the local council to do something about our living situation, we continue to live in a box of a flat and even though they promise they are helping I just don't see it. We have already submitted the paperwork for a possible new apartment, hell, we have even been to the site where said flats are currently under construction. We have been told its a "sure thing" but until the last piece of furniture from our current place is moved out I remain sceptical. Still, I continue to visit the offices of the housing department on a weekly basis just to remind them that with a handicapped child we should not have to live in these circumstances. It's a battle yes but I just can't give up so we will push on.
On the running front there is not much to report other than my first 24Hr race was a disaster. I won't re-hash it here but if you do want to know how it went here is the blog LINK. I am currently getting in a many kilometres as I can in the snow to help out my mate Andrew who is running through France pretty soon on his way from Scotland2Sahara.
Alicia is crazy busy with work, since her last pre-holiday post she has been to London a handful of times, is off to Dubai a week from today for 8 days and has a few more London trips in the New Year. She is great at what she does though and I know she loves the rush of planning and being involved with these great events.
Pearl's sessions with her therapists continue to move in a positive direction and even though she is not stringing sentences together just yet she definitely has a jargon of her own. All it needs is the words and a bit more construction and it will happen I believe. Most of the people I know, whether they are Autism specialists or just some of my lovely neighbours, all believe and see that she has a great chance to lead an OK life. That is nice to hear and even as a parent where you think towards the future and worry about bullying and if she will end up as an outcast, I tend to look at the progress and how difficult it is for her. What I do know is that I adore my family and would do whatever it took to make sure that they are always safe and cared for. I know there is a bunch of news I have skipped or forgotten about but if I were do do a retake of over three months of our lives I would be here all day, and trust me, time is not on my side.
To all the people who visit this site and there has been plenty, Alicia has been inundated with calls and emails asking her for help/direction in dealing with Autism. This tells us that the site means something to people and that it gives us the incentive to keep the momentum going. Our facebook group continues to also gain momentum and through this and our blogs we try our best keep on top of things. A sincere Happy Festive season to you. We have friends from many parts of the world with many different beliefs and as the year sludges towards its end our message is simple. Take care of yourselves and sorry if I do not have time to thank everyone who has made an impact on our lives this year, the reason is because so many of you have been there. You guys know who you are.
All our love and gratitude to y'all and we will raise a toast to you and the well being of your families for many years to come.
Your deputy news man.