27 Sep 2015

Going Out-Out With An Autistic Child

Sometimes, as a parent of a child with autistic spectrum disorder, discussing autism with other people can be a bit irritating. First of all, they will sometimes seek to educate you on autism as though you know absolutely nothing. Watching The Autistic Gardener does not make you an expert (although I love Channel 4 for mainstreaming it). Then they say things like "everyone's a little bit autistic" or "everyone's on the spectrum". I suppose they say it to normalise autism, which is great, but sometimes it feels like they are minimising the very real struggles you and your child experience every day. I'm quite sure most people are uncomfortable with new situations, and dislike change. They don't hurl themselves to the floor screaming in agony when it happens.
Never is this more apparent than when trying to organise days out. Not just going out, but going out-out. This can be going to other children's parties, a wedding, or a school trip, or a family day out. Jimmy is rarely invited to birthday parties anymore, partly because we never go, partly because he's been in the same class of kids now for two years - they know. There is nothing worse for an autistic child than forty kids running round an indoor echo chamber (/play area) screaming, without at least one to one supervision. Jimmy has had a school friend over to play once, and it went fine, until the friend left and Jim had a meltdown of house-shaking proportions. The same thing happens with school trips - he copes fine while he's there, getting gently more manic as the day goes on, and then has a massive meltdown when he gets home and is thrown off balance for the rest of the week. He's got a trip on Tuesday. I am prepared. As for weddings, just nope.
Now, naturally, this impacts on your family life. Every time we know we are going out, even if it's just to my in laws for a meal, we have to decide how far in advance we will tell Jimmy. Do we tell him the night before and risk him being up all night worrying about what we will eat? Do we tell him nothing until we get there and then have to give him several hours to get used to it? Do we tell him a couple of hours before and then have to cope with his mounting, swivel-eyed excitement that swiftly merges into anxiety and panic? And this is all to visit people he's seen on a regular basis since he was two years old. Going further afield is a much more difficult proposition. But he's not my only child. He has a neurotypical four year old brother, and a baby brother. They too deserve fresh air and exercise, and anyway, Jimmy has a profound interest in the wider world. He may not give a fig for other people, but he is desperate to know how the world works.
We have tried family holidays to varying degrees of success when he was younger. He didn't cope, and these were pre-diagnosis, so we didn't really know what the hell we were dealing with. Then, after a long gap, we went to Whitby at Easter for a short pre-baby break. We gave him plenty of warning, put it on his calendar, let him help plan meals (he is absolutely fanatical about food, with an eidetic memory for what he's eaten), told him what the menu was every day, told him the plan, and he coped beautifully even though he was still intently focused on the next meal. It was far and away the best holiday we have ever had. Planning is everything.

Do you have a relatively new diagnosis of autism in the family? Would you like some tips on going out with an autistic child? No? TOUGH!

1. Choose places that fit your child's interest. 
Yeah, it sounds obvious, but the best way to get the kid through the day is to guarantee there's something in it for them. You may well have always dreamed of visiting the Tower of London, but you won't enjoy dragging an over-stimulated, meltdowning, violent beast around it. You are highly unlikely to suddenly convert an autistic child into a deeply committed monarchical historian when they are so unhappy. We have the problem that our big two have totally different interests. If we want to take Jack to the National Railway Museum, we will find Jimmy a babysitter because you can soon spend far more time managing the autistic child's behaviour than looking at anything. And you have to constantly do that anyway, so why make it harder?

2. Plan your route
I'm not talking about getting there, I'm talking maps of the actual site. Jimmy's obsession is food, so I try to find out what food is available, and where. We took them to Duxford Air Museum, and it was lovely until we walked past the cafe to get to the other exhibits. Jim's focus was instantly lost and we went home shortly afterwards. Had I realised this, I would have tried to bypass it to get over the other side. Equally, had I known quite how much walking through empty space there is at Whipsnade Zoo, I probably would have gone elsewhere.

3. Contact the site 
I tweet a lot of attractions to find out how autism friendly they are. Attractions are slowly becoming more autism aware, which is great, and since they always want to look good on social media, they usually reply fairly promptly, often with better advice than you get on the website - Enginuity tweeted me this morning describing the site acoustics as a 'swimming pool with sirens'. This level of detail is far more instructive than anything you can glean from their website. They can also tell you about wristband schemes to avoid queuing (essential at theme parks), and whether you can get in as a carer at a discount.

4. Warn your kid
Only you can really gauge how far in advance you need to tell your children about things, regardless of their neurological state. I tend to put things on Jimmy's calendar at the beginning of the month (unless the event is right at the start), talk about whether we're going to have a picnic (yes, always) and sometimes show him websites so he knows where we're going. I try and frame things so he can understand them. He doesn't know the M6 can take years to traverse, so there's no point talking about the journey too much, nor about pinning it to exact times. I use meals as a frame - "we are going after breakfast, we will have our pcinic at X spot and then we will have a snack at the site". Of course, then I have to tell him exactly what snacks we are going to have, and STICK WITH IT because he won't forget. But it's not enough to plan a day out, I also have to plan him.

5. Be prepared for the worst
Take snacks. Take weighted jackets if you use them. Take comforters. Be prepared to use pressure therapy constantly while you're going around. Watch your child for signs of meltdown and go in early, rather than letting it escalate. Don't be embarrassed to tell staff he's autistic, if you need a quiet place to calm him down. Be prepared for something you never even considered suddenly being an enormous trigger. We took Jimmy to a theme park and expected him to freak out at the noise and the people and the food. We did not expect his total terror at the mascots, and spent the day studiously diverting him whenever they approached.
Be prepared to leave early if you have to, even if it feels like a massive waste of time and money, and be aware your child is probably going to be utterly exhausted by the whole shebang. It has taken a while to get used to the fact that Jimmy isn't ungrateful when he screams and cries and freaks out at the end of a day out - doing something out of his comfort zone is not a little psychological disturbance as it would be for most, it is a painful ordeal that he happens to enjoy at the time. It doesn't mean it's never worth doing it again.
And if you prepare for it all to go to shit, you will feel a sense of elation when it doesn't. HE CAN DO THINGS! WE DON'T HAVE TO STAY IN THE HOUSE FOREVER! HOOORAAAHHH!

11 Sep 2015

Online Only Sucks

My uni materials arrived yesterday, and the course website opened at the same time. And I am bloody annoyed to find it is another online only course. I have a rather thin textbook of theory, and that is it.

The thing that pisses me off about online-only courses is that it makes the whole process of studying so bloody convoluted. Instead of being able to pick my books up,find somewhere to settle and get on, I have to either sit upstairs on my desktop (difficult with a baby), or try and make my elderly netbook cooperate. Last year, I downloaded my module materials onto my Kindle using the service provided by OU. Except they're really not optimised for Kindle and don't make the experience any easier - I missed several key elements of the course on first read through last year because of the way the Kindle docs were set up. And switching from Kindle, to DVD, to book, to website, back to Kindle is not my favourite way of studying. My last module had an EMA at the end, so I could collate necessary material throughout the year, but I doubt my ability to revise properly from online only resources.

I can see online-only being brilliant if you are able to manage your time and study alone for a while, but being a breastfeeding mother, I will have to grab what time I can (often with the baby on my lap, like he is right now), and studying from a book would make it feel more cohesive than going back to a website.

This module is the last one of my degree, and it is SO important to me to be able to study and revise effectively that I will probably utilise the print on demand service. But that costs money. I have had my whole degree for £5, because I was the last intake that still got it free based on income, so I don't mind paying. Some people will have paid over £1000 just to do the module; to make them pay more to have a hard copy of their study materials seems grasping.

Harumph.

2 Sep 2015

Dead Children Win No Arguments

If you haven't heard about the refugee crisis going on recently, I can only assume you live in a cave. Thousands of people are trying to escape from hideous situations in Africa by coming across the Mediterranean. They're not coming over on nice Sealink ferries either, but on overcrowded tiny boats and dinghies. And they are dying in droves. They are drowning. They are hiding out in lorries, suffocating, and then being abandoned. Some of them have survived long enough to get to Calais, where they are trying to get here (some by running through the Channel Tunnel...which...bravo, sirs), and England takes umbrage because their holidays are being slightly cocked up by it. NOTHING GETS IN THE WAY OF AN ENGLISHMAN'S BOOZE CRUISE! NOTHING!

Now, being a fairly insular, bigoted, if not downright racist island, there is a lot of anger at these refugees. Fucking up the borders, causing queues (QUEUES! QUELLE HORREUR!), stopping Only The Young's first single being released on time. Trying to get in here and steal our jobs AND benefits, or whatever we think people come here for. The media and government are doing their best to inflame the situation by describing people as 'swarms', dehumanising the reality of thousands dying in desperation, and thus making it easier to overlook it.
So, this po-faced grumpiness on the right is then tempered by increasingly flailing arguments on the left. It's a humanitarian nightmare, and needs resolving, but it won't be resolved on Twitter or Facebook. Twitter and Facebook however didn't get that memo, and an image of a drowned toddler is now circulating to convince the right of the error of their thinking. "LOOK!" they scream "CHILDREN ARE DYYYINNNG".

Now, this is awful. It's awful on several levels. Since this is the internet, have it in bitesize chunks:

1. The death of any child is awful. The death of a child uprooted from their home to travel across the sea in the night, in circumstances adults describe as terrifying, is unimaginably awful. That's the problem with the entire refugee situation - it is unimaginable to the majority of even the poorest British folk. Showing a dead baby isn't going to suddenly make a lightbulb click on in their heads. Stories from the refugees themselves MIGHT, but it is generally beyond our national ken.

2. The bulk of the "SHOOT THE FUCKERS" brigade are a bit thick, let's be honest. Shooting unarmed people solely for wanting to come into your country is what they might do to you in North Korea, and is not in any way a logical solution. The people voicing this sort of argument are the sort of simplistic idiot you really are not going to convince with a thousand dead child pictures. They don't want a debate, they just want it to go away so they go back on their booze cruises, and refill the papers with nice titty pictures of some bird from Big Brother instead of all this suffering and horribleness.

3. If the only way you can win an argument about a horrendous situation, that really doesn't need any embellishment, is by showing dead baby pictures, then you need to RETHINK YOUR DEBATING STRATEGY. The problem is not necessarily the person you're debating with, but your own tactics. Or they are a slightly better educated version of number 2, in which case, cut your losses.

4. Now this picture is in the social network domain, you can guarantee that in a year or two it will be recycled as some god-awful clickbait meme. "THIS CHILD DROWNED BECAUSE THEY DIDN'T PRAY TO JESUS AND WEAR SUNSCREEN, LIKE AND SHARE FOR A PRAYER". You know the sort of fuck awful bollocks that's endemic on Facebook. The identity of the child is currently unknown, but surely deserves a better memorial than that. Which brings me to the most important point...

5. That's someone's child. A family is bereft right now; on top of everything else, their baby didn't make it. It's likely the parents didn't either, but we don't know for certain. Nonetheless, if your child had just died, in any circumstance, would you want their photo shared around social media, without your knowledge or permission, solely to make a gloating, political point?

During the Vietnam war, a photo was taken of a napalmed child and became emblematic of the futility of the struggle. Sometimes a photo can speak louder than a million pointless arguments. But that was in the time before the ubiquity of media.Anyone who really cares about the refugee situation - with a positive or negative bias - has thousands of sources at their fingertips, video footage, political commentary, individual stories, photos.
It is not your job to educate through sensationalism.Leave that to the tabloids.

UPDATE: The tabloids seized upon that photo with glee the very next day, and behold, David Cameron changed his policy on immigrants. It's a strange state of affairs when our government can only do the right thing when The Sun and Daily Mail tells them to.