Time Machine dreams.

Week four of the summer holidays, and I am writing this post from the loo my secret bunker, the place I go to escape for a few minutes throughout the day, in an attempt to retain some of my sanity.

This is one of those posts that I may regret writing, but it will be an honest one, and hopefully some of you will relate to this and I won't come out of it looking like the world's crappest mother.

Our first two weeks went well, PDA boy was calm, we pootled along with no major catastrophes, and I was smug. I obviously had this PDA parenting malarchy down to a fine art.

Then week three began, and oh Good Lord, I dropped the smug act by Tuesday. PDA boy has started to worry about starting secondary school. And we all know about it. Reassurances are doing nothing, planning a day out has become impossible, but equally staying in doing not a lot is also impossible. Activities get too much, inactivity gets too much. We are at an impassé. Deadlock. We now wait until the strategies start to be more effective again and anxiety lessens. This could be some time.

It is during times like these where I revert to my Time Machine Dreams™.

When I was twelve (and I have to point out I was an incredibly easy teenager, happy to stay at home and do nothing but watch my beloved films whilst playing with toy horses), my ultimate dream was to be a hermit. To live in a house with my dogs, perhaps keep chickens and sheep, but I was very clear that I wanted to be alone.

Obviously I didn't carry out this wish. I met my husband when I was twenty and we now have four children. We have the chickens, the ducks, we had sheep briefly, we now have pigs (and oh my goodness, they are gorgeous! More about them soon).

We go through good patches as a family, and we go through not so good patches, but so far we have a very good track record of coming out of those rough areas, but they are still difficult to navigate without getting too bogged down with everything.

It is times like these when I daydream about what I would do if I had a time machine. And this is where it will sound incredibly selfish, because it wouldn't cross my mind to go and do something wonderful for humanity, in these times I would take myself back twenty years or so and whisper in my younger self's ear that being a hermit might be a wonderful thing. I let my daydream take hold and imagine the house I live in, the space I have, the lack of need for ear plugs, not having to watch Daggerwin on an endless loop, not having the daily forehead slapping moment when I've forgotten to plan tea yet again, not having to worry that my actions have contributed to another meltdown, and feeling close to meltdown myself, not having to plan the finer details of every day whilst simultaneously bearing in mind the boys' own agendas. It's my own private version of It's a Wonderful Life, but I've yet to include a wingless angel.

I think I need these moments of pure selfish fantasy in order to pull myself together and realise that what I have got is ok. More than ok. And given the choice, I wouldn't be without any of them, no matter how tricky things can be, and no matter how exhausting things are.

If I had to choose five people to spend the rest of my life with, to the exclusion of everyone else, it would be my husband and four children, so in that respect I am very lucky. I wouldn't change my life for the world. I wouldn't be without my amazing people.

When I'm at the end of my tether, like now, when my arms and legs are a mess from picking, when my clothes need to be washed but I can't face it yet because they feel right, when my needs are at the bottom of the heap, I need to remind myself that I need some space, I need to de-stress and recharge my batteries, and I reckon that the odd self indulgent dream that helps me to get a temporary grip can only be a good thing. Good for me, and good for my family (as long as I don't actually build said time machine and bog off back to the 1990s).

I'm often reminded that being a parent is difficult, and it is. Being an autistic parent of autistic children is also very hard, particularly when needs clash and we are going through our own individual tricky times. But where we fell today, we have clues to prevent the same happening tomorrow, and hopefully we will succeed and I will regain my irritating smugness at getting it right again.

Autism and school.

This is one of the posts I've been trying to write for weeks, inspired by the cygnet course I recently completed.

I'm hoping this works out and I can keep it light and non-ranty, but we'll see. Light and non-ranty aren't strong points of mine!

During the few weeks I attended the cygnet course, (which I think I've said before was generally excellent and well worth being referred to if at all possible), a few things came to light, which made me thoughtful about how autism is perceived by the people in a position of authority, particularly in schools. A few problematic areas, to the course leaders, were not seen as problems to be solved, but simply life, something to endure. But to me, the parent of two boys on the autism spectrum, were issues that have seen one child being removed from school to preserve his failing mental health, and the other so stressed that sometimes he feels suicidal and we can barely cope with his aggression. They are issues which I largely see as avoidable, adjustments that could be made which might make the autistic child's life easier, and would not negatively affect the education of their NT peers at all.

The clearest message of the course was that parents can make the biggest difference for our children. I wholeheartedly agree with this. After all, we know our children best, we spend the most time with them, we love them unconditionally and become their biggest advocates. However, in real life situations, it becomes clear that we are often seen as inconvenient in proceedings, nuisances who want the very best for our children, who want others to understand them like we do, and like they understand themselves. PDA boy has a good grasp as to what overloads him and stresses him out, but as yet he finds it impossible to discuss these things clearly outside of home, so he needs us to communicate on his behalf, something that has proved very tricky.

During the cygnet sessions, the leaders were clear that there were many things that would make our children's lives easier in school, things that could mean better access to education and less overload, presumably leading to fewer meltdowns and disruptive behaviour, but they were also very clear that encouraging an environment to suit all would not be possible, that it would be too much to expect everyone to make the changes necessary.

To name a few of the everyday things that autistic pupils might find difficult (this is obviously not a complete list!):
Noisy and bright lighting
Buzzing smart boards
Displays
Noisy lunch times
Unstructured play time

I struggle to understand why these things cannot be limited or adjusted in order to make learning more accessible to autistic pupils. It makes me think of this picture:




Very often, and not deliberately (I hope!), our children are set up to fail, as in the first of the three pictures.
For a child with sensory difficulties, a primary classroom is set up in a way that does not suit them at all. Displays tend to cover every square inch of wall and ceiling space, they are often laminated so they reflect light.
The smart board and overhead projectors are left on throughout lessons, even when they're not being used, the buzz from these can be as painful and distracting as scratching nails down a blackboard.
So many things that make our children's lives more difficult, and no effort to change these things. When a child predictably cannot cope, they are treated as naughty, disruptive and lazy.

The second picture, to me, represents a child facing those same issues, but with teachers who understand and can use ways to help individual children to keep calm or who recognise overload and use strategies to help the child.

The third picture would be a classroom where lights were not fluorescent monstrosities, where displays are limited and walls are not hidden behind a mountain of reflective clutter, where there is a quieter room option for lunchtime, where children can choose to spend their playtime indoors reading, or in a structured game led by a lunchtime assistant, where teachers understand the little things that can affect a child and ensure their use is limited or that the child is allowed to use their own strategies (taking themselves off to a quieter area, being allowed to fiddle with something, not forced to use eye contact) to make things bearable, without fear of judgement or humiliation from peers or teachers.

But as simple as these sound, when I mentioned it to one of the cygnet leaders, I got the impression that you might as well ask all teachers to learn how to speak a little known dialect fluently and deliver lessons in that language. I feel that autism strategies which from our point of view (our point of view being those of us who truly understand our children, or are autistic ourselves) are seen as essential for the child's wellbeing, from a school point of view are so often seen as unnecessary, and pandering to a child who they see as needing a good telling off and that they simply need to try a little bit harder. Or a scenario that also happens is that autism strategies are put into place, but with little thought or recognition of the needs of the individual child. Like the saying goes, when you've met one child with autism, you've met one child with autism. Not all strategies are going to work for all children.

In a local school with a pupil who had a life changing accident, they were able to make adjustments, individual to that child, which enabled them to take part in all lessons, so we know it can be done.

When it comes to autism and other invisible disabilities, it seems it is fair game to not make individually tailored adjustments, in fact mentioning those words "reasonable adjustments" caused one of the cygnet leaders to laugh and comment at what a wooly, useless term it was.

Of course if you choose to look at adjustments as having to cover everyone in the autism community, it would be nigh on impossible to meet everyone's needs in the same place at the same time, but in a mainstream classroom setting with limited numbers of children with special needs, there are adjustments that can be made which will make their individual lives easier, without affecting other children's learning. It was also pointed out to me that there were a number of teachers who didn't believe in invisible disabilities, and that they had enough pressure without having to take on more and learn about their neurodiverse pupils.

Why in 2016 are we accepting this? Autism is here, and it's here to stay. Many of the world's greatest discoveries were arguably made by people on the spectrum. Many of the world's most talented actors, singers, artists, scientists and IT geniuses are neurodiverse. Imagine how much we could do if our children, instead of having burnt out parents fighting endlessly for scant support, had a system which automatically saw them and their NT counterparts treated the same, and given the same potential, in a system geared up to be truly accessible to all, instead of accessible only with a shed-load of strategies to enable certain children to cope. It wouldn't necessarily cost a fortune to implement, and the main thing needed is an attitude shift. But when those in positions to deliver this change are not doing it, or are coming into it with an "I can't possibly change a thing" attitude, it starts to look a bit hopeless for our children.

We need people to stand up to the mighty OFSTED, challenge their criteria that makes life difficult for those with neurological disabilities, and we need to inspire teachers, we need to lose this stigma that autism is negative. And, for that matter, we need to make sure that autism training, whether aimed at schools or at parents, is not delivered in a way that leaves massive gaps in understanding, which I believe it currently does. I think the work of autism outreach workers is amazing, but we need more like them, each with fewer caseloads, so they can lead training in a more individual way, but we do need teachers to be receptive to their knowledge, and not sit in meetings bleating "but we can't see it...." and generally being obstructive, as has been my experience.

The inspirational Tom Bowes AKA Autistic Genius has proposed that the promised increase in autism training should involve actually autistic people. Who better to spot the flaws in the current training information. I would also go a step further and suggest that classrooms should be assessed by autistic people. I personally found PDA boy's classroom incredibly difficult to spend time in, and would have been able to make several suggestions to make it more bearable.



https://petition.parliament.uk/petitions/161670

Here is the petition set up by Tom Bowes. (Apologies, blogspot has some sort of glitch which means the iPad turns itself off when I try to insert a link!)

So there, neither light nor non-ranty, and probably disjointed and rambly to boot, but something that's been on my mind a while.

I'll give you a piggy update next post, which I promise will be more lighthearted than this!