Tuesday, 26 April 2016

Beautiful skies; a love story.

Can I start this with an apology; it wasn't my intention to write a "Me Me Me" post at all, but after a few attempts to write a less personalised post, I lost everything I wanted to say.
I want to get across how important special interests are, but I can't possibly write about others' interests and do them justice.

The sky is my passion. I have other interests, but for the last few years, the sky in different manifestations has been the main one. Stars, birds of prey and now clouds. All of which have led to other interests.

I'll start with stars. As a child we lived in a beautiful house in the middle of countryside. I would spend hours looking at stars, without really knowing what I was looking for, just enjoying picking out familiar patterns, looking forward to winter when Orion would be in our skies once more, using The Plough to find the North Star, enjoying the sensation of being outside and all dark and quiet.


More recently, my love of stars has led me to discover Messier objects - a list of 110 objects in the sky that are not comets. There are galaxies (I find it mind blowing that it's possible to see other galaxies in our universe!), nebulae, star clusters and more.
In turn this has led to a fascination in telescopes and how they work, and bemusement at some of the logical names of some of the largest telescopes in the world - VLT = Very Large Telescope, ELT = Extremely Large Telescope.

Clouds have been a slow burning interest. I didn't realise how intense an interest it was until I saw that my cloud photo collection was standing at over 700 photos, and these are the ones special enough to have made the final cut. I estimate that, including the ones that didn't make the grade, I must have taken and studied nearly 3,000 photos.

Clouds have led me to an interest in meteorology, and in photography. I want to be able to take better photos, so I need to understand how to make the most of my camera.

The thing that separates out a special interest from any other interests is the intensity, and how it makes me feel.

When there's a beautiful sunset, driving up to the moors with my camera, my infernal, internal dialogue is switched off, i can utterly focus on the changing sky, and the images I wish to capture. I become me.

In real life I am fairly dull, I doubt myself more than I should, I dwell on the crap more than I should. I am usually knackered.

With my special interest I leave my dull, brown chrysalis, and become something with endless potential, the world is my oyster. I can be anything and anyone I want to be. I feel enthusiastic, excited about the future. I am energised. I can feel something inside me desperately trying to break out.

Seeing beautiful skies outside and not being able to get to them upsets me, I feel trapped and frustrated. I feel irritable and unable to settle to anything.

My interests make me a better person. If only I could make a living out of pootling around the countryside taking photos of lovely clouds!

When we were going through the assessment process with my 10 year old, I was told a few times that I must limit how much time he spent on his interests. I have no idea to what purpose, but on the face of it, I believe it was to make him more NT. I'm so pleased I listened to my own instincts about this and ignored them.

When he was seven, my son went on a school trip to a zoo. After a talk by the zoo's vet, the children were asked questions about the animals. My son amazed his teachers that day. My little boy, slightly below average academically, had self taught himself about reptiles, amphibians and birds and knew enough about them to impress the vet.

Another day at school, he told his teachers that we had a pet barn owl. Through his own independent research, he knew more than the average adult knows about birds of prey. He was also lying through his teeth. We do not, and never have had, a barn owl. But such was his interest, he'd built up a whole fantasy land where we did have an owl.

Our calmest times are when he is immersed in an interest. There's no way I'm going to limit these times, especially not since these are the times when we can see potential genius in our son.

Now, when something takes his interest, we are very careful to let it develop, and put things in place to help this development.

Many autistic people find themselves when they follow their special interests, whether they are scientists, actors, artists or IT specialists, by following their interests, the world is a better place for all of us because they have been allowed to follow their passions.

Sunday, 24 April 2016

God gives special children to special people? Really?

I'm sure we've all seen or heard something like this at some point, whether we agree with the sentiment or not.

Seeing this phrase as a meme on Facebook has brought me to tears and at other times given me the rage.

Being the parent of children with ASD is a mixed bag. At least it is for me.
I always have doubts about my parenting and read others' glowing successful accounts of parenting their children with a mix of awe (how do they come across so calm and at peace with their lives?) and doubt (no way is anyone this perfect at parenting all the time).

I'm hopeful that the majority of parents experience parenting like I do. Either that or I am truly terrible at it!

Most of the time I manage to get through life in a vaguely going-in-the-right-direction winging it sort of way. I can look back on a day and think about the things I could have done better, and reflect on the things that went well. The day wasn't perfect, but we got through it ok.

Some days I am amazing (if I do say it myself). Everything I do works, I remain calm through meltdowns, I manage to lead my fighting family away from their differences and either bring them together peacefully or separate them successfully. On these days, I look back serenely congratulating myself, thinking "That's it! I've cracked it!".

Admittedly these days are rare. Having children who barely tolerate each other at the best of times, and whose conflicting needs mean that when one child's needs are met, the other's are neglected,  a good day is one where we've got through without too many meltdowns or punch-ups of some sort.

Then we get to the bad days. The days where no matter what is done, it's wrong and escalates every situation we encounter. The days where no amount of strategies (that are usually helpful) make any difference. The sort of days where at some point I will know beyond any shadow of a doubt that I cannot keep doing this, that I would rather leave and live in a tent (with wifi) than have to face this ever again.

Thankfully these days don't happen too often, and when they do happen, it's usually because we are all simultaneously having a bad day which individually can be dealt with effectively.

I recognise that for my oldest, when he is anxious about something, usually change, he will be obnoxious and controlling. 
For my 10 year old, when he's anxious, he tends to be violent and extremely control driven, to the point where he cannot cope with even little everyday demands (hence his PDA diagnosis).
For my youngest, when things aren't right in his world, he will whinge and cry incessantly. 
And me, those days where any noise is too much, any contact is the most irritating thing in the world, and I feel a strong need to be completely alone and silent. 

Usually, it will be a bad day for one or two of us, we seem to take it in turns. We can cope with one or two bad days in the family. 

When these things happen together though, we will have a Very Bad Day™.

These are the days when "God gives special children to special parents" upsets me.

I am not special. 

Through genetics, I am who I am, I have the children I have, and I love them dearly. I wouldn't change them for the world. 

But some days I fail, some days my actions inadvertently make things worse. Some days (dare I admit this?) it's all too hard, and I struggle to see how it's worth it. I can't see the little improvements that I usually can, all I can see is the hard slog ahead and can't help but think I am the wrong person to be doing this. 
And on days like this, reading "God gives special children to special parents" is the last thing I need, because if that's the case, in this family, God got it wrong. These are the days I seriously doubt my ability to raise my family to be be caring, thoughtful adults.

Luckily, like I said, these days are rare. We can wake up the next morning and life feels more settled, we can cope. We can then see that there are plenty of positives, progress is made, life is good. 

I still don't think we are special though. 

I believe that we have the family we have, and we cope with things because this is our normal, this is what life is like on a daily basis, having to watch out for subtle signs, dealing with behaviour that some parents will never encounter in a lifetime of parenting.

You can't possibly live life in a constant state of shock at the violence we experience at the hands of our ten year old, all we can do is learn strategies that help him to feel more comfortable, which hopefully lessens the violence. We manage because we have to, not because we are some sort of superior being, sent to earth to give birth to our children and prove how special we are. 
We do what any other decent parent of any child does, we adapt to give our children the best lives they can possibly have. 

I'm sure having bad days is a normal part of parenting (at least, I hope so!), and perhaps it's important to have these epic shitty days so that we can look back on them gratefully that most days are ok. 

Saturday, 16 April 2016

Find your People.

Last week we visited a friend. (The same friend who introduced me to "You can't educate pork")
Visiting this friend is very easy. For ease of writing, let's call her M. M is one of those rare people who you can be yourself with. 
Even my 10 year old boy with PDA loves to visit M, which is something of a rarity as he mostly dislikes any social meet up unless it is strictly on his terms (she also keeps donkeys, which helps).

Before social interactions it is important to have some time to build up to the visit. 
I don't know about others' methods of preparation, but mine usually follow a pattern of avoidance, intense planning and anxiety.

Avoidance of other commitments to allow enough energy to focus on and enjoy the planned interaction, or if it's a Dr's appointment, to be able to communicate the reason for the visit and still have energy left over to take in what the Dr says back to me. Ideally for me, one or two social visits or appointments a week is the limit, and means that I can still function adequately enough to be nice to my children! Too much, and housework and parenting slips and I spend a disproportionate amount of time with earplugs in, ignoring everyone. 

Intense planning of conversations, remembering anything that was said last time, things I shouldn't have said, how to get certain important points across, going through bizarre scenarios which, with the rationale of hindsight, I know will never happen, but feel of utmost importance to think about so I know what to say and how to react if it does happen (it never happens).  I also make a mental note of the weather and major news events or local happenings, which generally means I'm prepared for any small talk, although if a topic is brought up that I haven't prepared for, or, heaven forbid, someone tries to be jokey, I will be thrown and have to work very hard to take in what they've said, process it and say something relevant back, or I end up standing looking gormless.

Anxiety as a result of all the planning, of knowing that you may have let other people down by avoiding them, anxiety of driving to a new place (cue hours on Google maps and street view to memorise road numbers and imprint images and landmarks in the brain so the drive there feels familiar), anxiety of saying the wrong thing, anxiety of the things that could (but mostly don't) go wrong. 

This is all before the visit has taken place. When it is over, there's another pattern of recovery, which can take anywhere between a few hours to a few days, depending on how taxing it was. 
Again, I don't know if this is how it is for others, but for me, this is avoidance/solitude, intense post mortem, and anxiety. 

Avoidance/solitude to allow my battery to recharge. 

Intense post mortem, the time spent going over and over the things said, processing the visit and making sense of things that passed me by during the visit.

Anxiety as a result of fatigue, as a result from wondering about anything I may have said wrong, or shouldn't have said. 

As you can see, it is hard work. It is exhausting.

Add into the mix parenting a child who has similar, if not more severe, issues, then you come to realise that everything that happens has an impact on the child, on you, and therefore on the whole family, and you need to understand the things that can help. For my family, being careful about the number of social activities we have, and allowing plenty of time before and after has been very helpful. 

And now I'll get to the point (there is one, I promise). 

When I visit M and others like her, although there will still be the need to recover after a visit, I find that because I feel so comfortable with her, I can be more spontaneous. I can skip the intense planning stage, and the anxiety stage. Although a visit can still be tiring, at the same time it is comforting and rewarding. I can say stupid things and it doesn't matter. In a way, this makes me think of her almost as family. A visit to someone like M is well worth it.

Some people can be more difficult to be with, because there's always the risk that they just don't understand. This isn't their fault, but when you either need to act more to cover up your feelings, or you start to monologue to try to explain, or you simply think "You can't educate pork", it's  a disappointing exchange, which then increases the anxiety and fatigue you are already suffering from through simply visiting them in the first place. Most of the services we have been involved with have been like this, which is doubly disappointing and anxiety inducing, because they are supposed to be the people trained to recognise the problems and work with the family to help improve things. 

I've come to realise how important it is to have people around you who understand you and your situation. People you never have to justify yourself to. People who won't judge you. People with whom you can be yourself, so that the social difficulties, and consequences of those difficulties, are fewer. 

I've found these people in real life and on the Internet.
And life is better for having them there.
Even though I've never met most of them, and probably never will, they are still there, going through the same things with their children, having the same struggles that I have, understanding and never judging. They may not know it, Hell, they don't even know me, but they are incredibly important to me and are a big part in my life and how I feel about my family and myself.

I'm sure anyone reading this, a blog predominantly about autism and PDA, will be some way to being with their people, and will be amongst someone else's people.
Not only are you important to your families, you are also important to people like me, faceless strangers on the Internet, doing our best to live under tricky circumstances, doing our best to navigate  largely inefficient services. You are there on the days when a quick "I get it, you're doing fine" means the World.

Thank you. 

Monday, 4 April 2016

You can't educate pork.

This is a saying a friend taught me.
I had to ask what it meant, but now I know, it's a saying I use frequently, even if it's only to myself.

Basically, it means that some people are so set in their beliefs that you simply can't say anything that will alter their mindset.

This has become my mantra. All those irritating times when someone has an opinion that is hurtful, bigoted, ignorant or just plain wrong, instead of getting my knickers in a twist (to put it mildly), I repeat "you can't educate pork" in my mind, and it really helps.

Using an inanimate meat product as a comparison is insulting enough to jolt me into not caring what they say, and kept private so no-one is hurt or insulted (apart from me, by the comments made in the first place). At the very least, repeating it gives me time to accept that the person saying these things doesn't care enough about me or my family to educate themselves and realise that the things they are saying make them look like twats, so I don't need to waste my breath on them any more.

With people like this you can tell them how it actually is until you're blue in the face, but it won't make a jot of difference.

It is a particularly useful tool to keep handy when you have a child with autism. As any autism parent knows, thoughtless comments from others are par for the course.

I read the following exchange on a support group today, this is a fine example of where "you can't educate pork" comes in very handy:

Football Mum: Well L had a bit of a strop at training yesterday.

Me: Yes well, luckily the children understand the way he is and leave him to it until he's ready to re-join.

Football Mum: Well, I know he has Autism and everything, but don't you think most of it is down to being spoilt? My son knows not to behave like that because I have taught him well......

You see? You simply can't argue with that level of stupid. I have to admit, as I read this, my mind took over with a chorus of "you can't educate pork, you can't educate pork, you can't educate pork", and it worked, I didn't feel at all wound up about the exchange. And as I write, I can't help but hear Dorothy saying "There's no place like home, there's no place like home", but instead of being transported to a safe place, with Aunty Em in Kansas, I'm transported to my own safe place of "I don't care lalalalala", and I didn't even need a hot air balloon to get there!

Some other examples where YCEP has personally saved me from unnecessary anguish:

From the headteacher at school, who really should know better:

"But he's going to have to do as he's told, he lives in the real world...."
(Oh if only it were that simple! And as I pointed out to her in an email, would she expect a physically disabled child to get up and walk without support, because they live in the real world?)

The many many people who have said any or all of the following:

"He's just being a boy, they're all like that" 

"Make him run, he doesn't do enough"
(About the boy who never stops)

"He doesn't have autism, he gives eye contact"

"He doesn't have autism, he's talking fine"

"Why should he have the benefit of having a scribe and extra time in exams, why can't my (non-autistic, no processing problems) child have the same? It should be a level playing field for all, this is unfair........"
(My words in brackets).
(This was a tricky one to ignore. The level of stupidity was high. Yes, my son with ASD, OCD, anxiety and poor processing skills really has a distinct advantage over yours because he qualified for some support <sarcasm>)

Also throw in a few "why shouldn't able children have 1:1 support in lessons", "why are you pandering to your child, you're just spoiling him", and many veiled (and not so veiled) comments about parenting, you can see why YCEP is so useful.

If we tried to educate every single person making these comments, we wouldn't have time to parent our own children. We have to pick our battles carefully, choosing the ones which we hope will get us somewhere. Battles with people that don't matter are a pointless waste of our energy.

So here, as a thank you for anyone who has read this blog (frankly I'm amazed!), I gift you the power of You Can't Educate Pork.
Use it wisely.