'LIfe with Children on the Spectrum'. A post from Carol McKiernan Founder & Chairman of Families Connected

 

FAMILIES CONNECTED is the chosen charity that The Long Push 2012 is supporting this year. We first saw Carol when she spoke at an autism workshop hosted by AUTISM INITIATIVES (http://www.autisminitiatives.org/) here in Merseyside. Carol spoke and we all listened and nodded our heads as she described those common incidents and triggers that we as parents and guardians of cheildren on the autism spectrum, experience daily. This was the first time that I realised (in true Close Encounters style), "We are not alone". As our situation became more complex, we reached out for support and found it through Carol and Families Connected. Carol has been enormously supportive of us. She has given up her time to come and visit us at home and see, first hand, our situation. Her experience as the mother of a son on the spectrum has been invaluable and she has supported us at all three CAF meetings we have attended, even acting as advocate for 'Rachael' when I wasn't able to attend due to work. All of this contributed to me choosing to try and support Carol and help Families Connected grow, to able to support more families, facing the difficulties that an autism diagnosis brings.

 

A while ago I asked Carol if she would write a short piece for this blog. This is her post...

 

 

'LIFE WITH CHILDREN ON THE SPECTRUM'

As a parent of an ASC child (Aspergers & ADHD) day to day living is like a rollercoaster ride. These children live in their own world which is, unbelievably different to ours. Somebody once said to me “you have to take a giant leap into their world because they cannot live in yours” and never a truer word spoken. The actual real life situation is one of treading water every day just to get through in the easiest way you can. Trials and tribulations are a constant thing from getting up in the morning to going to bed at night.

Undoubtedly one of the most difficult things to deal with for a parent of a child on the Spectrum is that sometimes the disability is not always seen. I myself call this the silent disability as, when you see a child/young person in a wheelchair the human reaction is sympathy and pity whilst for other children on the spectrum their behaviour is seen to be a production of bad parenting which causes major anxieties for the parents/families.

The aim of Families Connected is to somewhat assist in lightening the load of the burden that we carry everyday and to raise awareness of this disability to the outside world which in turn with understanding, care and love will make it easier for the family to live with.    

Carol McKiernan
Founder & Chairman
Families Connected     

To find out more about Families Connected visit their web page at www.families-connected.org.uk or on Facebook at https://www.facebook.com/pages/Families-Connected/190465257668501?ref=ts

     

Training Days Fourteen & Fifteen, Facebook, and F-F-F-Frustration!

I'm just catching up this blog by finishing a few posts I've had in draft. So please bear with me and I'll post them up as quick as I can...


Training is getting frustrating now! Having achieved the 25 mile mark a few weeks back I really want to just make strides (literally) and keep stepping my distances up, but life, work and the UK weather keep getting in the way! And I know it's not just me that this is bugging. The guys doing The Longboard Crusade, another long distance charity skate trip in the UK this year have posted their frustration on Facebook recently too. https://www.facebook.com/pages/The-Longboard-Crusade/293491110686750?ref=ts
Like me, the guys just wanna get out and skate! Good job I'm still on schedule at 25 miles. But the end of May is creeping up and the target is 30 miles by then.

On the autism side of things we just had some good news. We now have a Statement of Educational Need. This is one small step for us, and one giant leap towards moving 'Steven' into the school that is most going to meet his needs. That is to say, one that will allow him to achieve his academic potential, but that will have social communication and personal development at the core of its teaching.  Until then of course, the underlying anxieties of him being in the wrong school environment continue to come through more and more at home, making life extremely challenging for all of us, but especially his mum and younger sister. At present a 'normal' day (whatever one of those is) usually consists of much screaming and shouting from about 6.30AM, and delays caused by anything and everything that can distract Steven from his task...getting dressed and being ready to leave for school on time. What then follows is a day of Steven holding everything in and behaving 'robot like' in the school setting, followed by releasing the days pent up energy when back at home, in his 'safe space'. Sometimes it seems like others forget that it is his mum's and sister's 'safe space' too!

My girlfriend isn't keen on me sharing too much that is personal to our situation on this blog, so I mostly write about the planning and training for The Long Push journey itself. (I share more autism links on The Long Push 2012 Facebook page) As it happens another mum has recently put into words what I can't, on her blog, 'WONDERFULLY WIRED'. So by means of trying to explain the impact our situation is having on us, please read Fiona's blog post, 'Climbing out of the trench'  http://wonderfullywired.wordpress.com/2012/05/10/climbing-out-of-the-trench/


FACEBOOK

It seems like no time at all that I was spamming people's Facebook pages like crazy, asking them to go 'like' The Long Push Facebook page to make it up to 200 'likes'. At that time, Long Push sponsor Woody at www.bigwoodys.co.uk shared the page and the likes suddenly shot up. That's the power of sharing. Since then the figures edged up one at a time until a week ago weekend when we hit 300!! Excellent stuff. Thank you to all who have joined me for this journey on Facebook but please don't stop there, keep sharing and let's see if we can hit 500 by the time of the 2 day 100 mile journey in August.


TRAINING DAYS
I have managed to get in some short training days between showers and work etc.

Day 14: Saturday 21st April - 4.7 miles :  Just over 4 miles around my Marine Lake training circuit, plus my first deploy of my sail from sponsors @SportingSails but the wind wasn't consistent enough to pull me along at any speed.So I'll have to try that again another time.

Day 15: Tuesday 24th April - 10.52 miles :   Building my distances up again. 4 miles last time, a little over 10.5 miles tonight. That's two and half laps of my local raining circuit. Building up to another 25 mile or more skate in the next week or two. Thanks to.sponsors Big Woody's and DC Shoes for supplying me with footwear for The Long Push and this training for it. I've done over 140 miles in training now and both pairs of DC's are holding up brilliantly. The 'Monty's' have been used most and there's still loads of tread on my pushing shoe, look...

140 miles and barely any wear. Thanks to DC Shoes (Europe) and bigwoodys.co.uk

More posts coming just as soon as I get them posted up.

Keep watching...

Chris

Monthly vital statistics!

Just while I'm putting together a new post, I've decided I'll post some stats for the preceeding month on the 1st or thereabouts of each month. So that all the progress made is in one place each month.

Here then, with the most important figure first, are the stats for APRIL :

CHARITY FUND TOTAL AT 30th  APRIL  -  £346.00

TRAINING MILES COMPLETED IN APRIL  - 51.07 miles

TOTAL MILES TRAINING TO DATE  - 141.99 miles

NUMBER OF VIEWS OF THIS BLOG  - 3051

NUMBER OF FACEBOOK 'LIKES' - 291

The aim now is to DOUBLE THE CHARITY FUND MONTH ON MONTH. So the aim would be to get to £600 by the end of May. The blog under construction includes a section about FUNDRAISING and how we can make that progress towards the £5000 target. Much going on behind the scenes, but please continue to share links and especially the donations page at www.justgiving.com/TheLongPush

Had some great news about a new sponsor yesterday. Announcement to come as soon as possible. New full blog post soon too.

Thanks for all your support,

Chris

Interlude

We apologise for the interruption to this blog. This has been caused by circumstances beyond our control, namely an outbreak of 'life'. We are currently doing all we can to solve the problem. Normal service will be resumed as soon as:
A) we have regained control of 'life', and a new blog post is written (in progress)
B) when we know what 'normal' is again!

Until then...

Day 12 and Day 13 Training and the breaking of the 20 mile barrier!

Tonight, I am pleased with my achievement. Today I broke the 20 mile barrier that has been dogging my progress so far. My legs know it, but I'm well chuffed! Here's how it happened...

Day 12 Training: Tuesday 10th April : 4.01 miles
http://runkeeper.com/user/TheLongPush/activity/80763362

Took the opportunity to get out and do a few miles after work around my Marine Lake training circuit, but by the end of 1 lap I was ready to stop. A good wind was behind me blowing me northwards, but it was tough pushing in to the wind on the promenade. By the end of 1 lap of the figure of 8 circuit I was feeling a bit stiff in the back, so with that and the wind I decided to call it quits for the night. With 6 days at work ahead of me it was always going to be hard to find any more training time this week, so I was working on the adage that any training is better than none. I was right. It wasn't until the following Monday that I got my next chance to get out to train.


Day 13 Training: Monday 16th April : 25.6 miles
Thursday, Friday and Saturday leading up to today saw me and my colleagues working three 12 hour shifts, and if travelling was added to that they were more like 14 hour days. On top of this I was still working till late on the Sunday too! So all in all this probably wasn't the best preparation for a 20 mile plus skate! But the weather forecast was showing that Monday was going to be the only dry day of the week, and on waking up there it was, blue sky, sunshine and barely any wind! Perfect conditions. My distance skate bag was aready packed and ready to go so, instead of driving to a starting point, it was urethane straight onto the pavement outside home and off pushing to the starting point of Sector 1. And so, at the start of Sector 1, I whipped out Camera 1 (Praktica) and made a quick intro video...
 

Sorted. No problem. Pushed off and along the first part of the Coastal Road and then stopped at the next section to try and do some more filming. Some great features on the coast road here, so I figured it would make for some good footage. No sooner had I turned the camera on than "Memory full"! Damn! I've tried changing the SD card on this camera before and it doesn't like ones with too many gig, so turned to camera 2, (Fuji).


For whatever reason (because it gave me no error message) this one wouldn't record any more than 2 seconds at a time! No idea why. Never done that before! Camera 3 (Alba): Forget it! This one was a free gift  and the sound is dreadful, not to mention that it too cuts out all the time as well! Well and truly hacked off at technology farting in my face in such a way (again),  I pushed off and tried to tell myself I wasn't annoyed at yet again, being unable to provide any video footage of a training ride. But I was. Well and truly hacked off about it. Still, a mile down the road it was forgotten and I was just enjoying the day and the progress I was making.

The end of Sector 1 was reached and I stopped for a breather and to check my phone for messages. Pretty soon I was back off along the A565 on route to Tarleton, which I got to at around 12.00 and made this quick vid...

I skated past the end of Sector 2, into the village and stopped outside the library for a sandwich. Found the health centre, close by too, so those should be two good LONG PUSH poster locations when I visit again on a rainy day. I'd been tracking my ride with RunKeeper as usual, but between trying to use the phone camera to make a video and the battery life disappearing before my eyes I thought I had lost it. Only to find that it was there on my Facebook page when I got home! Weird! Good that I got half the info, but dissapointing that the battery life of my phone is so...poor (being diplomatic) that I won't be able to fully map all my distance work on 
Runkeeper.

Propped up outside Tarleton library.

I'd decided, because I had to be back to take one of my cats to the vets, to do Sectors 1 and 2 together and then come back the same way, rather than do 20 miles out and then get public transport back. So, after a buttee and a can of Monster, it was back homeward bound. A slight head wind this time, but nothing to cause any great problems. So basically it was straight back via the same route. Only when I got home and mapped the journey on Google Maps did I find the full distance travelled...25.6 miles. Well and truly beating my 20 mile target and actually reaching my target for the end of April/1st May. In fact my total distance pushed and pumped so far on training is...126.7 miles. So although this is a 100 mile journey over 2 days, the total distance pushed by the end of the ride is going to be pretty impressive. Still, I'm now officially ahead of schedule, but my legs know I've done some miles today. I figure a couple of days off and then a quick 1 lap of my training circuit will be ideal before my next long distance training,  as long as I get the weather to do it.


Next long training ride, whenever that will be, is going to be another 25 miler, but this time from the beginning of Sector 1 to Preston and maybe beyond. I'm hoping to make contact with some familes affected by autism and support services around the Southport to Penwortham and Preston areas. So if you live in that area and you would like to be featured in the training for The Long Push 2012, please get in touch. I'm interested to meet people and hear their experiences with autism and the support or lack of it that you get. This journey is all about raising autism awareness. Please join me along the way.

Chris

Todays route...


View Day 13 Training for The Long Push 2012 in a larger map

"My diet starts tomorrow", and other things I've learnt over the first three months of preparing for The Long Push 2012

"When you're younger you can eat what you like, drink what you like and still climb into your 26 inch waist  trousers and zip them closed. Then you reach that age...24, 25...your muscles give up, they wave a little white flag and without any warning at all you're suddenly a fat bastard!"

Quote by Rimmer in Red Dwarf

And if you think that quote is right about being 25, it sure as hell is when you're 47!! 
I'll get back to the topic of this post shortly, but for now, indulge me a minute or two, with a post I've had in 'draft' for a month or so...

I've talked about the poor weather over winter here in the UK quite a few times in this blog so far. It hasn't only stop me from getting out on the longboard, but I couldn't use my two wheel love, my Triumph TT600 motorbike between Boxing Day and March this year either. So I was hopeful of some decent weather on my two days off in the first week of March, to just get it back out on the road again for the spring/summer, and maybe get up to the weekly Monday evening bike meet at St. Annes for the first time this year. 

Swapping 4 wheels for 2 - 'Yellow WKD' at Lytham Windmill

I follow the same road as the route plan for The Long Push to get to St. Annes on the bike. I just get there a LOT quicker! And I was lucky enough to win some brand new Triumph leather trousers in my size, 32" waist on Ebay recently, so I was really looking forward to getting kitted up and out on the road. After a few false starts the bike (I call her 'Yellow WKD') started up and ran fine. Time to try the leathers on. Expected no problem. My old ones are a 32" waist and the 34" ones I have are a bit drafty round the waist, so should be fine.


Now, it could just have been that the pants were still new and stiff and need wearing to flex them a bit. No, really...stop sniggering at the back there...it could! I suspect however that the sad truth is more like...

• My eyes are NOT bigger than my belly! I eat too much! And as a result,  I'm a tad closer to a 33" waist than a 32" at the moment!  

Ahem! Seriously, I need to address my diet, structure my meals and work out a fitness plan to support the training I need to do to push a longboard 50 miles a day for two consecutive days. And to be honest, that ain't gonna do me any harm. It's long overdue. I'm already using RunKeeper to track my training rides. Now I've added 'My Fitness Pal' to the apps on my phone, to track my calorie intake and match that to my training. So now that the chocolate fest that is Easter is over, I need to get this 'healthy eating' trip on.Easier said than done for a chocaholic like me!

So, that's one thing I've learnt through the last three months or so. Which leads neatly back to the theme of this lil' blog post,  other things I've learned this year so far...

• If you really must start training for a longboard trek in December in the UK, don't expect to get out on yer board much before March!

First time I've done anything like this, for charity or otherwise, and the winter UK weather wasn't the best for longboarding, so the first few months have been busy getting all the social networking set up in place, making contact with people, getting logos done etc while it's been cold, colder, downright freezing and/or wet! But at least for next year I'll have this experience already. Next year I'll wait till March to kick things off.

• The closest I am to an 'athlete' is having Athletes Foot! 

Sad, but true. See above re: diet etc. but also regarding my feet! Two thirds of my life wearing skate shoes has left me with all sorts of bumps, bruises, verucas, seed corns, hard skin and...athletes foot. And with two 50 mile pushes ahead of me, now more than ever I need to get my feet sorted. I feel my first trip to a chiropodist comin' on!

• Blue is the generally adopted colour to raise awareness of autism!

I realised this after I'd decided to adopt the yellow/black colour scheme for The Long Push for 2012 of course! Doh! Still, I've got a bright scheme to attract attention, and now I know how to 'tweak' it for next year. Yup, I'm thinking about 2013 already! 

•  Take your time to find what works for you before looking for sponsors.

Actually, I've pretty much done this. My initial plan was to not try to get a hardware sponsor for this year, just to use my own kit, but now that I'm happy with the set-up I've decided to use I may contact some of the companies to see if they will support The Long Push by replacing the kit that is going to get worn out in the process. Plus, it's another way to widen autism awareness.

• LISTEN to those with more experience!

There's a wealth of experience on offer at the likes of  http://www.skatefurther.com/  http://www.pavedwave.org/ and http://www.silverfishlongboarding.com/ among other forums. This I DIDN'T do enough of at the beginning of my planning for this year. But now I'm going to address that over the months leading up to the 2 day journey.

• Autism is EVERYWHERE!

The amount of connections I've come across and made through this process so far has been amazing. From other skaters who are parents of autistic kids, to the amazing work that the A.skate Foundation do at  http://askate.org/home to staff from MONSTER ENERGY (see the Long Push page at http://www.monsterarmy.com/members/thelongpush/ ) who have friends on the autism spectrum, and even longboard companies who make and sell their own products to fund autism therapy http://zealouslongboards.com/ 

The connections between the skateboarding/longboarding communities and the autism commuinty are huge and inspiring. And I hope to continue to reach across these two divides with The Long Push over the next 4 years until 2015. Then I think it will be time to stop, and slow down a little, aged 52! Just a little though!

"Wait a minute dude? What about longboarding and yer training?"

Ah yeah, well it's been a rough week for training this week, as you may have noticed if you've been on the Facebook page. After shorts and T-shirts a week ago it's gone cold and wet again, and other comitments have gotten in the way of skating again. My cat's got on the board more than me this week!

Perry on the 'Switchblade'

But that's life and it is always going to happen. I managed to get out for a quick 6 miles yesterday before the rain came again, but I'll leave that for now and add it to the next full training blog. Problem is that this coming week the weather looks crap again, and I have a week at work that includes 36 hours at work over 3 days...and it's a 6 day week! So trying to get any miles in this week is going to very difficult. But we'll see. Gotta be positive, but I'll try to keep sharing links on Facebook if I haven't got anything to update the blog with.

OK, I'm going to finish this post with something I posted on the Facebook page the other day. Another fundraising idea for The Long Push, and one I could use some feedback on please.

I'm looking for a corporate sponsor to fund the cost of getting some charity wristbands made for THE LONG PUSH. 250 bands are going to cost £142.50. Sold for £1 each (assuming I sold them all of course) the donation would boost by another £107.50 to £250.

500 bands would cost £210.00 and potentialy generate an increased donation of £290 to make £500, again asuming all the bands were sold. I don't want to risk a large donation by not selling all the bands, so the bands would be made in THE LONG PUSH 2013 colours, so they could still be sold next year too.

Prices found here...

http://www.globalpromotionalsolutions.com/silicone-wristbands/

So the two questions are: Would you guys buy the bands for £1 each and...is there a corporate sponsor out there who will make the donation to fund the bands please? I hope you'll contact me either on here, at the Facebook page or at the e mail address with any feedback, or if you are one of those sponsors coming forward to help the cause.

More soon. Have a great week,

Chris

"

Every now and then...