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……!

Reflections of the truth

I follow a great blog called Premmeditations whose author recently wrote a letter to herself, you can read it here. She found that writing a letter to herself helped her work towards giving up guilt. I’ve written before about my guilt that I don’t do enough therapy with Jacob (you can read about it here) and I’ve probably skirted over the large amount of times I have felt responsible for Jacob’s disability (here) but many of the things I feel guilty about are nothing to do with Jacob and his disability. In fact in thinking about writing this I realised what I normally feel guilty about is something else entirely:

Dear Me,

I once heard someone say “we use other people as a mirror”, that what we believe (or imagine) they think of us is actually what we think of ourselves. This came as a revelation to me. I have always worried far too much about what others think of me and felt that much of what they thought of me was negative. I reckon this will come as a huge surprise to people who may have known me for a long, long time. This is because I am fairly good at putting on a show, an act; a confidence act. I know that self doubt will get me nowhere, so I squash down those negative thoughts and just, well, bloody well get on with it. Feel the fear and do it anyway.

Many (many, many) moons ago at school we played a game when we all wrote down one thing about each member of our circle of friends in secret and then each read our own. There was no nasty-ness (girls school but we were proper friends, right?!) but I couldn’t believe it when many of mine said “confident”, “very very confident” and the like. I can remember thinking “I’ve spent almost every day with these people for 4 years and they don’t know me at all!”. They don’t know that inside of me is an ugly, twisted little creature who constantly shouts  “You’re not good enough,  no one really likes you, you’ve made an idiot of yourself”. This creature shouted loudly and often when I was younger, now less so, but still daily.

Anyway, rambling on, so back to the idea of other people as your mirror. I’ve always thought that others think badly of me, that I’m not doing things right, that I’m not doing well enough, that I should be exceeding expectations not just meeting them. When it comes down to it, I feel that other people expect me to be perfect. Always full of energy, always running around getting things done, doing them brilliantly; but the moment I heard this phrase I realised that it is me that expects all these things of myself. It is me that reads nuances and subtext into things that are said to me, looking for the bits that imply I’m not good enough.

So, my friend, you need to cut yourself a break. You need to treat yourself gently, kindly and recognise all that you do achieve. You need to take a bloody great chill pill and stop expecting to be bloody perfect, OK?! You will burn out, you are probably close to doing so, so you need to listen.

You try your best. Yes of course there are times when things get too much and you possibly don’t deal with things in the best way possible but, you know what you’re human and although you might be full of faults, so, my dear, is everyone else and so you really mustn’t constantly beat yourself up for not being perfect.

When you get fed up with dealing with the umpteenth tantrum of the day and get a bit shouty and cross this is because you are human. Loads of people find two year olds a strain to deal with and they possibly don’t have a child with sensory processing disorder pulling their hair out every time their sibling has a tantrum. Most people would find this stressful to deal with. Finding it stressful does not mean you are a failure and when others try to insinuate that you should not be stressed, just ignore it, they just haven’t walked a day in your shoes.  I repeat, feeling stressed does not make you a failure.

Lots of people find parenting hard and tiring without a child who gets out of bed multiple times throughout the night and repeatedly head-buts his own bedroom door. So give yourself a break, it is difficult to retain a sense of perspective when you’ve not had an unbroken night of sleep in approaching three years. Tiredness makes everyone ratty. You’re not, in some way, worse than others because you sometimes feel like you can’t cope.

Forgive yourself for not being perfect and not always dealing with the challenges life throws at you in the perfect way, at the first opportunity. You don’t have to be perfect, in fact, expecting yourself to be perfect is probably a bad example to set your children. No, NO, stop it, SEE your criticising yourself again! Move on from that thought please, nothing to see here…

Look at how far you’ve come. Think back to the days when you endlessly lay awake at night worrying about Jacob and what could be wrong. The crying phone calls with your Mum when you went over and over the same anxieties. The fraught conversations with your husband about your concerns when he wanted to believe that all was still well. You have moved on, you have made progress and that’s something commendable, feel proud. You’ve moved forward with the life you’ve got. You’ve overcome a serious illness and the fear that you might not be here to see your children grow up, you recovered, and although your body will never be as strong as it was, you’re still here and not only that you’re doing the best you can in often difficult circumstances. It is OK that you are sometimes tired or in pain and occasionally need a day when CBeebies does the majority of the parenting.

Instead of thinking about all you could have dealt with better, of all the things you should have done but didn’t, think about what you have accomplished that day, think of the things you dealt with well, of the fun times you’ve given your children, of the things you have done for other people. Don’t just constantly berate and punish yourself for not being perfect. You don’t have to be.

Love me x

Ooo – a day out at the National Marine Aquarium, Plymouth

We’ve just come back from a  tiring day out at the aquarium; one of our favourite places and much loved by Jacob. I wanted to blog about it because it’s just such a fab place, great for children in general but also good in terms of accessibility too. It was our place of choice when we needed to distract him when he couldn’t eat prior to his recent MRI under general anaesthetic. The icing on the cake is that Carers go free on production of a child’s DLA award letter.

Jacob loves fish. Probably for the same reason he loves birds, the movement and the way they flit about; he seeks out movement and loves fast moving or spinning things, it’s part of his sensory process disorder.  He’ll ask me if we can go to the aquarium for the day in his own unique way; by blowing down his nostrils (a sort of snort and his approximation of the sound ‘ffff’) and signing ‘boat’ in Makaton (it’s a fairly similar sign to ‘fish’, I guess!). We don’t, however, normally go in half term; too manic and too noisy. Our best trip by far has to be the one we made on the last shopping Saturday before Christmas where we shared the whole place with about 5 other families – top tip there!

Water, light, movement - Harry enjoys the anemones

Water, light, movement – Harry enjoys the anemones

Anyway,we made a trip during the school holidays because it was organised by the lovely people at Friends and Families of Special Children, Plymouth (fantastic charity, do go and check out their webpage) and so we were extra fortunate that we managed to secure one of the four disabled parking spots (these are tucked down behind the aquarium in an area marked Coaches Only,  another top tip there!). Without one of these you have to park in the nearby council car park and pay a fair bit. The walk from parking to the aquarium in a little distance (about 3-5 minutes walk) and there are some inclines along the way but it’s easily do-able for us and Jacob’s Maclaren Major.

Inside the aquarium all the areas are accessible mainly because long sloping ramps are used to take you from floor to floor. You have to go up initially but then take the lift right to the top and make your way back down – much easier! This layout makes it so easy when you’ve got to push someone around it but I’ve found that it’s also brilliant when you’ve got a small toddler as it’s safe and easy for them to walk around (and tire themselves out). They also have the normal facilities, so as usual it’s annoyingly difficult to change a nappy on anyone larger than an 18 month old (sigh).

Jacob does find it hard to see into some of the tanks that are high up or if you need to look down into them but really so many of the tanks are low level or have huge glass sides that you can go right up to that we haven’t found this a problem at all. In fact in many ways so much of it is accessible to him visually that it can get a bit overwhelming at times and we need to have regular breaks from the movement of the fish, of the water or the light on the water so that he doesn’t get too over excited.

Particularly accessible is the huge atlantic ocean tank where a huge curved glass wall allows you to be right up against the fish and watch them swim over the top of you. On quieter days Jacob likes to lie on the floor with his head on my lap and just watch the fish go almost all around him.

The Atlantic tank

The Atlantic tank

Today Jacob’s thing was lying on the floor in the science area behind the atlantic tank, where there is a glass floor and ceiling, not the most helpful thing to do on a crowded day. I don’t have a photo of this as I was too busy preventing him from licking the floor and this was the moment we decided it was time to find a nice quiet place to sit down for a while!

So if you’re down this way on holiday or live nearby and haven’t been yet, I heartily recommend a trip, you might even see us there we’ll be the ones shouting at fish, licking the tanks and having a lovely time!

Messy Eating Mayhem

This post is about messy eating. Not your normal, cute messy baby-face stuff either. Proper, hardcore messy stuff. If you’re of a delicate disposition – step away now!

In amongst his collection of issues Jacob has significant oral-motor problems. This means several things: he can’t speak many words, he dribbles excessively and he is a very messy eater. It’s all caused by the fact that his brain can’t control his movements properly, all movement is affected but what happens when you want to speak or eat is extremely complicated so it is more greatly impacted upon. He has speech therapy and Talk Tool therapy to try to help this, we see slow small amounts of improvement. He also has sensory processing problems and can’t really feel what’s in his mouth so often take food in and out to check what it is or spits it out in favour of something else on the plate.

Over the last few years Jacob’s messiness a caused many a childless friend to go slightly green whilst watching him eat. I’m pretty sure it may have put a few of them off reproducing all together! It is not a sight for the faint-hearted but has at least saved me from the downfall of many mothers – the eating of the children’s left overs. I mean what degree of insanity and desperation would be required to eat this?:

j mess

Jacob spends most meal times dressed in an array of protective clothing: a fabric bib, an wipe clean apron and a crumb catcher bib; all to save multiple changes or clothes and the requirement to have Victoria Beckham’s clothes shopping budget. I, however, need a major shopping spree as practically every item of clothing I own is now stained with God knows what (that’s my excuse, and I’m sticking to it!). I’ve already abandoned patting myself on the back at my achievement of having two boys born 2 years and 3 days apart and the fortune this would save in clothes buying. Not so, many of Jacob’s clothes are lucky if the outlast him let alone make it be used by Harry.

As the weather improved it suddenly occurred to me. I don’t know why I hadn’t thought of it before. Massive amounts of cleaning up could be saved I thought, “This is the solution, no need to worry about mess if it’s outside, we’ll just eat picnics! Picnics, it’ll be, all year round!”

So we tried it, our picnic was crackers, cheese, pasta salad, cucumber, satsumas and juice at Pencarrow House. Nothing fancy and everything fairly crunchy, easy to eat for Jacob and best of all at the end of it, I could just shake the blanket and leave the mess for the birds.

The boys had a fantastic time and really enjoyed themselves, and they actually ate quite a lot when I could stop them from feeding their lunch to the peacocks hovering optimistically nearby. But my hopes of a mess free affair where dashed (sob). Jacob still managed to plaster himself and the picnic rug in food and it wouldn’t all shake off, but you know what? We had so much fun eating our picnic, watching the peacocks and chickens, and laughing at Harry rolling down slopes and clambering on fallen trees, that I didn’t really care!

Jacob enjoying making a mess outdoors

Jacob enjoying making a mess outdoors