The One where Camp Amazing turns out to be… amazing

As a first holiday as a family of four it might have been a foolish move but way back in the cold, dark winter going camping with the boys sounded a fantastic idea. In my mind’s eye I appeared vision of he long hot days summer days of my childhood spent travelling round France and Spain with my parents and our old canvas tent. It was so hot that the cassette cases on the parcel shelf of the car melted. Ahh, great days. So I didn’t think twice when I booked up our weekend break, despite the fact that we didn’t own a tent, sleeping bags and I had a husband who hated camping.

As the holiday drew slowly nearer, I slowly began to panic slightly. What was I thinking?! We had to much stuff to buy or borrow, how was my husband (who has part of his spine fused together) going to get any sleep, would my chronically bad sleeping children sleep AT ALL!  To stave off the anxiety I began over-planning, days of research were undertaken to choose the best sleeping bag for the boys, several camping shops had to visited to see the possible objects before the best price could be found, lists needed to be made (if in doubt, write a list: feels like doing something but avoids actually doing anything!); but as the summer holidays approached a pile of camping “stuff” started to gather behind the dining table and I slowly stopped panicking and started to get excited.

As it turned out the only things I really needed to worry about were:

Would we be able to fit everything in our car and roof box? Seriously, this is half of our stuff:

Half of the stuff to fit in the car *@&!

Half of the stuff to fit in the car *@&!

I was excited but filled with trepidation, needlessly as it turned out. We could not have picked a better place to start camping as a family, Camp Amazing. Camp Amazing is a weekend camp for families who have a child with complex needs. I always thought that this was a fab idea, but now? Well, now I think it’s a effin fantastic idea! And this is why:

  • It’s somewhere where everyone GETS it.
  • It’s somewhere where your family is normal and no one stares or thinks what you do or say is odd.
  • It’s somewhere where siblings can find friends who walk in similar shoes.
  • It’s somewhere where you don’t feel the need to explain your child in any way.
  • It’s somewhere where there was something to do for everyone, no matter what.

And after that I should really big up the sibs. Harry is only little so I’m just at the beginning of learning about what it will mean for him to grow up as the only sibling of a brother with a disability but I can say that if he grows up half as kind, generous, tolerant and considerate as the siblings I met at Camp Amazing, I will be so pleased (and, of course, massively patting myself on the back!). I’ve never met a group of kids who can play together all weekend and yet I didn’t see one argument, who can work tirelessly helping out and keeping other children safe and happy. They really were amazing.

So, if you didn’t make it this year, go on, be brave, think about booking for 2014,. I promise you, you’ll make amazing memories and most likely make some new friends, plus you’ll be in at the early years of something really special. Claire, I don’t know if you’ve realised yet but I’ve got a feeling that you’ve started something that is probably going to get a teensy bit massive!

Oh, and if you’re now seriously considering it, here’s a few things I learnt that might be useful:

You can never have enough bibs or clothes, washing them in washing up liquid really doesn’t work out that well!

Bring two pairs of flip flops in case yours break on the first day.

Late nights, discos and sensory processing disorder can be an interesting combination – next time I need to plan in more sensory diet time for calm down periods.

Someone needs to invent an extend-able dog lead type device for two years olds who are always running off, as it’s amazing how quickly they move and how easy it is to disappear in a marquee.

If you have a potty training or just trained child get the potty out when you’re beginning to set up  otherwise they will poo on the pitch.

If you can avoid these and our other major pitfall of ripping the tent on it’s first outing, well you’ll be for the best holiday ever!

harry camp

The boys enjoying Camp Amazing

The boys enjoying Camp Amazing




Playing Catch Up

This week I heard words that, to be honest, I’d given up on waiting to hear long ago. Three little words that astounded me.

“Might catch up”

When Jacob stopped receiving play development therapy from portage we were referred to a local outreach service run by a charity called BIBIC, a charity that helps children with brain related conditions. We’ve just had our second visit from our lovely therapist, the previous one being around 6 months ago; session 1 involved lots of questions for me and a number of play based assessment activities for Jacob, in session 2 the therapist ran through her observations and findings and suggested a number of activities we can do daily with Jacob to help his sensory processing problems and move his development forward.

During the feedback the therapist showed me a list of all the things Jacob couldn’t do at the last visit that he could do now and showed me that Jacob had moved forward almost 4 months of development in the last 6 months! His fine and gross motor skills previously measured at around 15 months are now at 18/19 months level. Much as I know that he is progressing, I found proof of this large leap forward  incredible. It was then that the therapist said the astounding words: “if he carries on like this, as the developmental milestones become smaller, he will gradually catch up”. I said “Do What? Sorry? He might catch up?” She smiled, nodded and stressed “He may do”. I know it’s a big might, and I am mostly reconciled to that that he is unlikely to ever really talk , but the fact that he is showing such progress in his motor skills is just so exciting regardless of whether this level of  progress will continue or not.

This news has really motivated me to continue with the hard work. For the first two years of Jacob’s life I felt like I was knocking on a door only to see it open a tiny bit and then slam back in my face. It was relentlessly disheartening and so many times I felt like giving up. I felt as if all the work we put in was achieving nothing. It’s amazing to watch children without disabilities just do stuff, they just pick it up and off they go. Everything with Jacob has to be taught, over-learnt and taught again, hand over hand. It is unrelenting repetition and sometimes it feels if you are no further forward after months of work. Even with proof of fantastic progress, I would be lying if  said I didn’t often feel resentful of the fact that so much of our life is dominated by carrying out Jacob’s therapy; but with news like this? Well, I just need a nightly big glug of wine and a vow to try again tomorrow. He’s trying so hard, so I can’t give up

I am so grateful that we’ve had this chance to work with a a charity that has let us see Jacob is moving forwards and that he is doing well in his own way. So it saddened me greatly to receive news that the BIBIC outreach programme is finishing due to lack of funding. This will be Jacob’s second and last visit and programme. We’re not giving up though, we’re off to find a new and exciting way to maximise his progress as he seems to be on a roll at the moment. More news of that anon……!