Living Outside the Box

unschooling, special needs and life as a disabled parent


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Autism as an Eight Year Old

H is 8 now and has a diagnosis of Autism Spectrum Condition.

He wanted to do a Q&A session to explain to people what he actually thinks about living with autism.

Q: ARE YOU GLAD THAT YOU HAVE AN OFFICIAL DIAGNOSIS?
A: Yes. I feel like it makes me a bit special and different – not that I need to be much more different! Haha. It kind of made me feel like I’m a bit more of a rare person so I think that don’t be sad that you have a diagnosis, it makes you just more special.

Q: HAS THE DIAGNOSIS HELPED YOU TO UNDERSTAND YOURSELF BETTER?
A: I guess. I can’t really answer this one very well because it’s hard to imagine life without and that answer is more centred around people without diagnosis.

Q: DO YOU MIND HAVING AUTISM?
A: No, actually, I don’t really care whether I have it or not. I’m happy either way. I think it’s nice, as I said earlier, I felt a bit more special.

Q: DO YOU HAVE ANY ADVICE FOR OTHER KIDS WHO MIGHT HAVE AUTISM?
A: Yes. Don’t think your difference is bad, because everyone is special in their own way and you’re a bit more special because you’re a bit rarer. So have fun in your life and be happy that you are a bit more rare, because as a lot of wildlife experts say, “the rarer the thing, probably the better it’s going to be”.

Q: WHICH ASPECTS OF AUTISM DO YOU FIND HARDEST?
A: It makes your fears a bit more extreme, but then that makes you more happy when you get over them. Like me, I don’t like a lot of noise going on at the same time but when you manage to cope you feel happier.

Q: WHAT MAKES EACH PERSON WHO HAS AUTISM SPECIAL?
A: Nobody is going to have every symptom, so if you have particular symptoms then you have a high chance of having your own combination which nobody else has had. No person is the exact same, no person with a disorder is the exact same.

Q: WHAT DO YOU DO TO HELP WHEN YOU FEEL STRESSED OR SCARED?
A: Usually sensory stuff quite helps. Like with me, sometimes I go into my room and put on all my lights and lie down and chill out. I also like to run around a lot, that usually helps.

Q: WHAT CAN OTHER PEOPLE DO TO MAKE LIFE EASIER FOR PEOPLE WITH AUTISM?
A: Always be nice. There are mean people in this world, don’t be one of them! You’ll get a lot more happiness in the world if you are good.

H sums it up like this –

“I don’t mind living with autism. It’s nice that I know I’m special. Don’t feel sad if you have something like what I have, just remember – you’re rarer, and rarer is better, so have fun with the time in life which you have. And, I’m going to make my disorder catchphrase thingy – rarer is better, don’t feel sad if you have some disorder, just make sure you’re happy. The end.”1013575_651914311523596_1285589607_n

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A Tongue in Cheek Look at Friendship Through Disability

In some ways, I must be a pain in the backside as a friend. I joke about it, but I know I’m not the easiest person to hang out with.

  • I often have to cancel plans due to pain levels – if my hip tries to escape its socket as I’m getting dressed, then chances are that I’m going to spend the afternoon lying on the bed trying not to move.
  • It’s difficult to carry shopping on crutches or a wheelchair, so if we go out for some retail therapy then you will likely end up carrying my bags – I’ll try not to buy anything heavy, but if I see another cast iron pan in a charity shop then your biceps may be getting a workout!

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  • I can’t drive so I usually need a lift – oh, and room for my wheelchair.
  • If we go out together regularly then at some point you’ll probably be dismantling my wheelchair – it won’t take long before you’re popping wheels off like a pro, and your Tetris skills will improve as you practice fitting the frame and wheels into the boot of your hatchback!

But I do like to think that I come with some perks too!

  • When you drive me somewhere we can park near the venue using my disabled parking permit – vital for me, but pretty convenient for you too*
  • At theme parks and the like you can often jump the queue with me – no standing in line for hours.

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  • Many places will allow me a free carer to accompany me. Ok, so you will be helping me out, but you also get free entry to some awesome places that often cost a small fortune to visit.
  • If we bump into your ex while we’re out, I can accidentally run over his toes – I’ll leave you to guess how much of the combined 22 stone is the wheelchair itself, and how much is my weight 😉
  • And how could I forget? My outstanding personality and wit is… well… I’m definitely unique. And everyone needs at least one slightly eccentric friend!

* before anyone gets their knickers in a twist, I am not advocating using a ‘blue badge’ fraudulently, so chill.


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Camping Supplies List

Given our desire to travel despite limited finances, we often go camping in order to explore new locations and return to favourite places.

I’ve looked at many camping lists over the last ten years, but never found one that was quite right for me, so I have created my own master list and am sharing it here in case it is of use to anyone else.

There may be things that you deem unnecessary, or things you must have that I don’t include, but it might at least provide a starting point.

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Main Equipment

▪ Tent – we have a Buttermere 8, which provides huge living space for me to store my wheelchair etc in the dry and to play indoors in bad weather
▪ Cooker – we use a two burner and grill which runs on gas
▪ Gas cylinder
▪ Kitchen stand – it saves both scorched grass and aching backs
Tripod – for cooking over the campfire
BBQ or fire pit – for cooking over and sitting round in the evening
▪ Camp beds/mats – I now use a camp bed as it is raised and easier for me. R and H both use Self Inflating Mats (SIMs), which give more cushioning than a foam mat but roll up fairly small.
▪ Sleeping bags and spare blankets
▪ Pillows
▪ Chairs
▪ Folding table
▪ Electric hook up cable
▪ Mallet
▪ Spare guy ropes and pegs – guy ropes are useful as make-do washing lines as well as holding your tent down

Kitchen Equipment

I pack as much as possible of these items in a flexi bucket which doubles as a washing up bowl.

Plates and bowls
▪ Cutlery
▪ Mugs and beakers
▪ Bin bags
▪ Tin foil – useful for lining barbecues as well as wrapping leftover food and food to be cooked in a campfire.
Baby wipes – I like to keep a pack near the cooking area. They are so useful for wiping sticky spills or for a quick hand clean when prepping food.
Kitchen roll
Washing up liquid, sponge and tea towel
▪ Wooden spoon and spatula
▪ Hand towel – useful for handwashing when prepping food
Chopping board and sharp knife
▪ Scissors
▪ Oven glove or pan holder
▪ Pans – we have a set of nesting Billy cans. The lids double as frying pans and the saucepans can be used on the gas burners or hung from a tripod over the fire
Tin opener
Wooden spoon and spatula
▪ Spare freezer packs – most campsites will have a freezer where you can store ice packs. If you have two sets then you can alternate them and keep your cool box nice and cold
Water bottles – as well as your main water containers it is good to have some handy bottles of ready mixed cordial/squash/juice/water that are easy to grab. We use Kleen Kanteens, not cheap to buy but have lasted five years so far.
Matches and firelighters – I am capable of lighting a fire from scratch, but when you’re tired and hungry a firelighter means dinner is ready a few minutes sooner 😉
Lantern – I like one that hangs from the roof, but as long as I can see well enough to make hot chocolate in the evening then I’m happy

Miscellaneous Supplies

First aid kit – mine is only basic, but it’s always useful to have a sticking plaster handy, especially when camping with kids
Plastic bags – laundry bags, holders for treasures found on the beach or in the woods, emergency rain hat… Carrier bags are infinitely useful and most of us have plenty of them hanging around at home.
Duct tape – this stuff will fix your tent/airbed/raincoat/football temporarily so you can carry on enjoying your holiday
Torches and batteries

Clothes pegs
▪ Notepad and pencil – for making lists or playing noughts and crosses on a rainy day
Penknife or multitool

Toiletries

Soap
▪ Flannel
▪ Bath Towels
▪ Baby wipes – yes, baby wipes again. They are ideal for sticky hands, grubby kids and a wipe of your face and neck is very cooling in hot weather
Toothpaste and toothbrushes
▪ Shampoo
▪ Deodorant
▪ Comb
▪ Sunscreen

Clothes

▪ Per adult
Underwear
Socks
Tops
Trousers
Shorts
Jumper
Pajamas
Hat (sun or wooly, depending on weather conditions)
Coat
Spare shoes (always take a warm pair and a pair for beach/water)
Swimsuit
Wetsuit if appropriate

Per child
As above, plus an extra pair of shorts or trousers, and a onsie for cold nights

Rucksack

It’s useful to have a rucksack for days out while camping, and I pack last minute items and things I might want to hand on the journey in it.

Wallet
▪ Phone and charger
▪ Camera and batteries
▪ Book
▪ Crochet/knitting/your favourite portable hobby
▪ Any medications you need

Fun Extras

Ball games
▪ Glowsticks
▪ Binoculars
▪ Card/board games – great for evenings or rainy days
Fishing net
▪ Bucket and spade

Hopefully this list is helpful, enjoy your holiday!


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This is Disability

This is disability.

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It’s not pretty.

It’s my bed, where I spend a lot of my time.

It’s PIP forms, because the government want to know whether I’m still disabled.

It’s a very ugly sexy bed rail so I can get in and out of bed to use the toilet independently.

It’s bags of laundry that I’m not able to wash, because today I can’t bend down to the washing machine.

It’s all the stuff I might need, scattered on the floor. Crochet, magazines, slippers, jumpers.

It’s a grabber, so I can reach the aforementioned stuff.

It’s not glamorous.

It is practical.

It is life with disability.


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Finding the learning in fun… or not!

When I first started investigating autonomous education, I thought that I needed to find the learning in everything.

Baking a cake? Well, there’s maths and science covered.

Using chalk on the street in Summer? There’s handwriting practice.

And that’s all true, there is learning in everything. But in searching for it we can end up missing the fun. It’s easy to push activities on your kids because you are worried that they don’t do enough maths or English practice, rather than suggesting activities purely because your kids will love them.

And what about the skills not so easily measured? Learning to navigate socially, finding their own levels of comfort in different situations, loyalty or morality for example?

If your child is enjoying themselves then that is enough. Honestly. You don’t have to constantly analyse everything they do, hoping to find a link to something they might learn in school.

If you’re worried then join in with the activity or hobby they love. Play Minecraft or ride a horse or try a new recipe. You never know, you just might enjoy yourself too.


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Things not to say to someone with Hypermobility Syndrome…

Hypermobility Syndrome (also know as Hypermobility type Ehlers Danlos Syndrome) is a genetic condition in which the body produces faulty collagen. As collagen helps make up many tissues in the body, including your ligaments and skin, it can cause widespread, incurable symptoms.

According to the NHS website, Hypermobility Syndrome can cause –

  • pain and stiffness in the joints and muscles – particularly towards the end of the day and after physical activity
  • clicking joints
  • back pain and neck pain
  • fatigue (extreme tiredness)
  • night pains – which can disrupt your sleep
  • poor co-ordination
  • recurrent joint dislocations – such as a dislocated shoulder
  • recurrent soft tissue injuries – such as sprains and sports injuries

In addition to these it can cause internal issues such as digestive problems, plus stretchy, easily damaged skin.

So here are my tips for not putting your foot in your mouth when talking to someone with Hypermobility Syndrome.

1) Don’t ask us to show you our bendy joints. Firstly, we are not here for your entertainment. Secondly, every time we do a ‘party trick’ we stretch our already weakened ligaments a little bit more, which leads to further dislocations. When we’re older we’ll be cursing ourselves for showing off.

2) Don’t presume we are all circus freaks.  Hypermobility is a spectrum. Some people can make a living as contortionists and have no pain whatsoever. Others are less obviously bendy but severely disabled by frequent dislocations and ligament damage. Just because someone can’t put their legs behind their head and stretch their skin out to grotesque proportions, does not mean that they do not have Hypermobility Syndrome.

3) Don’t ask if our flexibility makes us good in bed. The answer is yes, unless I dislocate a hip mid-coitus and have to rather carefully extract myself. But you know what? You (I presume!) wouldn’t ask another random stranger about their sex life, and mine is none of your business either.

4) Don’t suggest a magic cure. We know you mean well, but we have spent hours on the internet, researching our condition and trying to find something to help. A vitamin, a special kind of yoga or using lavender oil is not going to correct a genetic disorder. Personally, I use lots of things to help – epsom salts in a hot bath, massage, a TENS machine etc, but none of them are a cure, just ways to help me cope.

5) Don’t tell us that we just need to be more positive. If I wasn’t being positive, I wouldn’t be out of my house seeing you! It is impossible to be positive all the time, it’s natural to have days where it is all too much. But most of us stay positive out of necessity, if we didn’t then we would have no quality of life at all.

So what can you say to us?

Try and forget that I am sat in a wheelchair, or that someone is wearing a knee brace over their jeans. Say hello, do the English thing and talk about the weather. Ask about our condition if you really need to, most of us won’t mind giving a brief explanation. Despite my list of “dont’s”, just relax! Tell me about your job, your boyfriend, your kid.

I promise, we’re not scary, just a little different.