Overwhelming.

So, now I am up to 8, actually EIGHT drafts of things that I thought I wanted to say. But, how am I supposed to know what I want to say?

To know what you want to say, you have to imagine someone is listening. Mostly, they are not. And mostly, to be honest, that’s wise, given that mostly, nothing I say is actually useful, and, in a culture of walking away from things and people who do not spark joy, I am already used to being walked away from. I don’t spark joy in myself, there is no spark left for other people, I get that makes me, well, it makes me used to being on my own. I accept there are good reasons for that.

Anyway. I do have things to say. I might not be part of any of the narratives, but, I still have things to say.

OK, for all the people who have ever thought, or explicitly told me (and yes, people have) that they have a stronger mind than I do because I have bipolar and they don’t. Fuck you.

I am sick of that idea. Maybe I have triggers that you don’t. Well, you know what? Lucky you. Lucky. Not skilled, not stronger. Lucky.

I try so hard to get all the positive things said, and to actually mean them, but, meaning them doesn’t make my journey easier or better.

I *am* struggling. I do not think my son is less or the experience of raising him is more negative because he is autistic. But I do have feelings knowing that my daughter is being assessed for the same thing. Not because she will be any different than she is, but because MY ability to connect and understand will be less, and as the ONLY allistic person in the house, ALL those things that the autistic community thinks happen all the time for us, will happen, essentially never for me. Doesn’t make my children’s journey less or more, just is a thing in my own. A thing which is.

I am struggling to deal with all the cancer stuff. Mostly, emotionally. It is a shock to see someone look so ill. It is hard to know what to do or say or feel. it is especially hard to know what to feel. This is a person who was my closest friend, the ONLY person who understood me, who didn’t shut my illness off into a thing that I was Acceptable without, who noticed things, and remembered things, and planned surprises. This is a person, who is already gone. I already have to grieve every day for that person, that I am alone. And yet, I still have the label, there is still nominally a person who is supposed to be that person. I feel like I did at the height of the believing. When there was story of one twin who could connect and be, and one who could not. So now, I have the care and respect and familial love for the one who could not, but, I miss every day the one who could.

So what happens then? How do I ever express the reality of the feeling of this to people? Turns out I never can, because anyone who knows already thinks I am insane and wishes his speedy demise. And anyone who doesn’t expects a relationship that doesn’t exist. And I am caught in the middle. I will never be able to speak about what any of this actually feels like for me because it is either deeply disrespectful to the standard belief, or far too kind to someone else’s.

And yes, feel what I feel. But sometimes, it would be nice to feel things that were allowed to be shared, and which could be valued and understood as more than me being too bloody miserable to be able to be tolerated.

It’s not actually even that I am bloody miserable, I’m not. But there is no chance to demonstrate this. The best I can ever be is empty. Neutral. Because, I get to do the encouraging my children, and the level discussion of today, and the stiff attempt at empathy for someone going through something I understand but do not say, or that I will understand, but cannot express. I don’t get to do ANYTHING more. Anything fun I do, I do alone. I have had some fun times taking myself for cocktails and the theatre, or staying in with a movie, or learning to do something new,  or achieving something or whatever, but, I have no way to share any of that. Who cares? And, I mean, why should they?

Everything I share is at the most superficial level I can manage at any given time. Because I already know. I KNOW people walk away from me for feeling. People walk away from me for staying. People walk away from me because I am not someone else. Because I used to not be able to close down the pain.

Now everything is closed down. Tight. And there is no one. No one gets in. Sometimes I try, you know, but, turns out, conversation is a skill you can lose really quickly. And so, now, I just know I am meant for silence.

Because the other thing I have learnt is, it really doesn’t matter how loud you scream I need help right now, if there is none and you keep going anyway, soon enough no one will believe the need. And you learn, I learnt, that actually what you think was a need, is just  want.

Then people can be angry because they have a *need* for help that you would desperately love, but their need is a *need* and they demand the help, because how dare I imagine that humans can function without that help. But, *I* function without that help. Am I not human?

Maybe I am not human. It is a fear that has plagued me. Only really because sometimes it is hard to see why else must I be so entirely alone?

But alone is somewhere from where breakfasts still get made, and school lunches prepared. Reading is heard and encouragement given. Hugs go in one direction. And so, if I still function without those things deemed necessary by others, then I become unacceptable to those others.

So, however urgent that scream that I need to be heard NOW. I am carrying too much NOW. I know that later, I get up, and keep carrying and am not heard. so it can’t have been need, so I should not have shouted.

And, I don’t understand how being human actually works.

When TV bites back.

I remembered today, that old piece of advice about being really aware of what TV you watch. Tuning it in to how well you are feeling.

I hadn’t been feeling especially unwell. Pretty motivated actually. Well, apart from needing a day to lie still and not be bothered by anyone, but, that’s a normal, occasional part of being subject to hormones (i.e., human)

Tonight, I watched Poppy Shakespeare. If you haven’t seen it, it as a film, about the interplay of two particular day patients at a mental health day service. Mixed in with how much is missed by staff, how targets are different, and how the system is there to be played, because it causes harm.

Today it is two days later, and I am still suffering after quakes from this film. Well that, and the realisation that I might actually feel better if I had accepted illness, and thus treatment. All this fighting it is exhausting. Maybe it would be nice. Maybe that’s what I meant whenever I got angry and bitter. Maybe it would be nice, to have the help of knowing taking x leads to feeling y. Maybe it would be nice to know there was something. I haven’t done better in my life for rejecting it.

But, as ever when I get locked into one of the spirals that I kind of wish would lead back to psychotropic medications, something happens. Usually, I get physically ill, so I need to give myself the down time to recover and it helps everything. This time, not so much.

This time, thrown into a day of emergency. By definition unplanned. By definition a challenge. And now I am angry that no one notices in the middle of it all is a person who managed to cry the whole way home from school drop off two days ago, and no one noticed. Who doesn’t really understand how everything continues to be barely held together.

I always knew, with my second child, from the second she started school, that it was a matter of time before I would be called to some major accident she had managed to get herself into. Today she was swinging on a chair. Fell. Split her head open. Cue, phone calls, trips to GP, and A&E. But she can, at least, now go to school tomorrow with exciting tales of how not only did she get her head superglued together, but, she charmed the staff so thoroughly that she came home with not only a sticker, but a whole new cuddly teddy!

I managed to wash the blood out of her school uniform, so, win:win. I mean, as long as I keep checking her sleep for signs of unconsciousness. Luckily, she only sleeps next to me.

Of course, in order to do this, I had to make phone calls and sort things out for her brother to be able to get in from his school. Thinking that one emergency in a day is likely it. I have made space to talk to him this evening, I have tried, but, I am not sure it is enough. I mean, he got home safely, and everything fell in to place so that someone was here for him. But, really, how do you help a child who has had to watch as his school needs police and fire fighters to help a child not even a year older than him, who has managed to climb onto the roof of a four storey building and threatened to jump off?

To tackle this with the all round sensitivity it needs, to him, and the other child, and the school needs more than I fear I have been able to give this evening.

That said, I will be speaking to the school concerned. It is a huge concern to me that in the one and a half TERMS he has been there, I have had to go in to deal with bullying, he has had to provide a written statement for the police on an unrelated matter, and now this. This is not a safe and nurturing environment for even the most resilient child, goodness only knows the damage it is doing to a child I cannot always assess the emotional impact of things on.

I have to make sure enough washing is dry to be useful in the morning, and then I can fully devote my evening / night / morning to the study of a small person, probably doing nothing but sleeping. And thinking, hers was an accident that could have happened to any child at any school, at home. But dealing with it meant I took my eye off the much bigger, and more specific and potentially damaging problems he is facing.

This is why being one parent is hard. Because, one person can only be one person. They can only ever be one person, and sometimes that just physically is not enough. Just, irrespective of working or not working, of gender, or of anything else, being one person is limiting when you need more.

Sometimes I think I am less than one person, and that means we are all struggling even more, because there is just less of “person who is dealing with it” to go round. And then I hear all the “people like you” stuff that has been levelled at me, and I wonder, maybe it was right.

I mean, the background political climate doesn’t help much either.

 

PTSD and Me. A work in progress.

I found myself, on my sofa this weekend, feeling horribly sick, “seeing” a thing that happened more than 10 years ago. A single, traumatic event. In which I, and others, might have died. Text book event to trigger PTSD. This is not a surprise. But, the clear response was something I haven’t experienced in that way for some years.

But, I am learning so much all the time, now I am in a place where I *can* learn, with less clouding, and contamination.

People are not supposed to live the way I lived. All the way through. And, if you grow up with that, and it’s never pointed out, all you now is that it is normal. The feelings that go with it, they can’t be normalised, but they don’t have any reason. So, it all becomes illness.

Which is not to say it is not illness, because it certainly hurts, but, it is not always the illness you end up labelled with. Funnily enough, one of the things I learnt this weekend, is that people with actually PTSD, particularly based on a chromic experience, can often times be misdiagnosed with bipolar.

Which is not to say I am convinced that I don’t need that label. I have lived with it for a long time. I know it,  I am comfortable with it’s movements, with how it wrinkles through my mind. But, I am also sure that the effects of everything else leave much deeper, harder to live with, harder to accommodate, trails through my brain, like soot.

These things are difficult, and I still learn things that I have mislabelled as things that are supposed to have happened to me, because I am different, less, I deserve such things. it’s only hearing / seeing other people discuss their own histories that helps me understand what it is that happened in my own past.

There are things I know are wrong in relation to being a parent, but which I still thought were OK for my experience of being a child, because I caused x, or because y is my fault, so… These are all typical trauma response. I wonder if I hadn’t been dismissed so often, if I hadn’t come from such a nice, engaged, involved place, maybe people would have listened more to what I was actually saying.

But, in reality, this doesn’t matter. What matters are the years I have lived with all of this, and accepted my, not human, status. The people who have been cross with me because I can’t see myself in the way they think is right, or healthy. The people who are angry because they can’t understand why I don’t do or think as they would do or think.

I didn’t understand why I couldn’t, so I just felt more ashamed and incapable. And I am not there yet, but, I am learning. Things are moving.

The other problem is that, as a country I feel us all being pulled into a version of what I lived. And It’s hard to understand how to mitigate that. Maybe it won’t be like this for everyone. But, the risk is there that it will definitely be for some, and even worse for others. I feel it already.

So, it all runs together. And I learn more, and then I forget it while I am in the middle of feeling. And then I look back and realise that I am *trying* to mitigate it, and always have been. Some times with better ways than other times. The reaching out I do trying to talk about nothing, when I have the huge panic that says talk to someone, CONNECT with someone, get someone else to acknowledge that you are REAL. It’s a kind of urgent, sick, anxiety. That feels absolutely life and death.

I don’t think people know that. I don’t think it would be better if they did. But, if *I* understand it, maybe I can sit in the anxiety, and NOT reach out, until I am ready to be a better, more open, more selfless friend. Maybe this is why I can’t connect in a real way.

This leads to another issue. I mean, some things are not my fault. But, some times are my fault, and it  is important to learn more, so that I don’t pile that onto other actual human beings. It doesn’t work. It hurts people, and then they hurt back. And that just causes more damage, for everyone involved.

So, I learn that trauma keeps causing more trauma. Like Some kind of animal. But, you don’t know you are feeding the animal if you don’t understand what is happening. Which makes it cruel in the extreme. A thing you can make worse, because you don’t know what it is.

it *is* possible to live through some things that other people can easily spot as traumatic, and not realise. It is not wrong to not realise, it’s just part of the problem.

It takes many, many interventions, many times of having one’s attention drawn to things which are not right, or part of the problem, if you really don’t know that. It is not simple.

I am only starting to make progress in understanding with *actual* understanding now. After this long. And I worry that I know people who will be more angry about this. But I am also still frightened of upsetting, or failing the primary people. So essentially, being afraid is the basic emotion that exists in my being. And it’s taken this long living in an environment where that is not objectively justifiable, to be able to see that. And that is, in itself, frightening.

But, perhaps, also, progress.

Things Disabled People Know

This is the latest hashtag on disability. Personally, I am all for disability visibility. Why should all people not have access to the many and varied things that make life possible, enjoyable, rewarding, etc?

But, I have questions. I usually do. They usually don’t go anywhere. But in this instance, they are these.

I appreciate that disabled people is not a homogenous group. There are many and various things shared under the use of the hashtag, as one would expect. But, it is also a self selecting group, restricted for a variety of functional, situational, environmental, financial, and other reasons. A restricted group that is not learning what disabled people know. it’s learning what a subset of disabled people know. Which is useful. But it is limited. Where is the voice for those missing people?

I see that they *may* get some voice, but…

Having described my self as disabled at various junctures in my life, I am fully aware that no one gives the tiniest toss what I know about being disabled.

I know this because, my interactions come up against how much damage I do to my disabled child. Because I can’t understand him. Of course, my interactions about my own disability are muted because they open me up to being informed how awful it is to have a parent with my disability. How much damage “people like me” do to children. Or “people like me” do to basically anyone who is not me.

So, forgive me if I am supportive of disability rights in my own way. Because I don’t fit any of the little boxes.

While the disabled world is busy telling me that I make no effort to communicate in a modified way, I will be over here studying blood cancer at nurse specialist level so I can answer questions in the way my autistic family members need, whilst studying psychotherapy at post graduate level to support the person with the cancer, AND understand some of the psychosocial needs of the autistic people better (yes, as distinct needs)

I shall be busy finding ways to keep my children safe, and allow the various expressions they require (and finding out why they benefit, rather than how to stop such things as stims)

I shall be busy balancing their various social, and down time needs whilst also being criticised by others for allowing activities that “better” parents don’t because they are necessary to the actual wellbeing of my actual child.

I shall be busy finding safe things to say to have enough social interaction so the children have play dates and get invited to parties (but not saying enough things to stop people wanting to talk to me, because it’s not safe to actually express any of *my* real life, as a result, I won’t have actual friends, or actually do anything in the adult sphere of socialising )

Then, I shall be busy doing all the things that must be done, household, nutritional, etc.

Then I shall be trying to fit in small pieces of work, and similar activity so that one, mythical day,  I will be able to take my NOT stagnant CV out and get a real job. If anyone will hire someone like me.

Then, if I am lucky I will find time to remind people saying MH issues are not real that 20% of people die JUST from the one I have, and other disorders have higher mortality rates.

Once all that is out of the way, and I have wrestled with a) the worry that I am doing too much, and that is a bad sign for my health, and kids HATE having bipolar parents, b) the worry that I am damaging them anyway because I don’t understand ALL of autism c) that I am a failure of a human being because I am too useless to have friends, and what kind of role model is that for anyone. d) that why do other people get to say this stuff out loud and NOT be rejected. e) That there ARE no reasonable accommodations for life. e) the fact that the country is falling to bits and the children will have fewer chances. Once all of that is done I have to make myself go to bed and have a regular routine, to make sure I stay as well as I can.

SO, the things this disabled person knows are that it is a huge waste of time. There is no point in my saying anything as part of any identifying group, because I am just going to be criticised, or rejected, and STILL have to do all the same things, so who cares?

 

Being Bipolar

I have known I was bipolar for what is, now, most of my life. Partly because I am old, and partly because I was diagnosed quite young. Except I was OFFICIALLY diagnosed, for the purposes of strictest honestly to my employer in 2000, but my dr had discussed it with me several years before that.

I am being surprised this last few weeks, and, if I am honest, months, by how I feel about this. You would think it is a thing I am used to. I no longer take medications, so, I *should* feel very little about it, right?

But lately, I find a lot of anger and understanding has come into my feeling about it. I spent a lot of my time trying to believe that all the doctors and HCPs were wrong. I didn’t have this thing. How could I? I admitted, freely, that I WAS certainly unwell, but, bipolar is thing that is with you for life, and that means people don’t do things that I have done.

But this is not really the whole story. I can evaluate my history, and it does fit into bipolar. I can’t evaluate how effective the meds ever were, because they were my single biggest fight, because being able to function without them gave ME the belief that I could do things I had previously done, or things I wanted to be able to do. Now I wonder whether I would have had, would continue to have more peace and calm, and REST if there were meds for me.

I have also had time and space to consider my actual life, rather than the life in my mind (which is *supposed* to be the same, but, is not) Time and space is a precious thing that we don’t always value highly enough.  And, from this vantage point I can see other things that have fed into my mental unease. Things I do now that mitigate PTSD symptoms. Things I understand that I work harder than people who don’t know them to keep my children safe from. I have checked that these things are safe and in moderation are sensible.

I see how much I know I have to justify myself and my life and my feelings, and I see this is a result of mental ill health and bad experience. I see people on line share their experiences of mental ill health, and I see how my experience does match with some of those, and that, were I still engaged with services, I could get help with some of the things that I dismiss as just me being useless, or because I am rubbish. Or the sparkly, sharp, prickly jumble in my head.

I am envious of people who can talk about these things. I used to talk about them, before talking on the internet was really a thing, I use to talk in person. But I am not the narrative now, and I am glad for that. Because my narrative, is learn not to present as different, learn to mask illness, learn to pretend. it’s the wrong message. YES you CAN still do things that you dream, BUT the better message is to  unpick WHY you dream those things, and look at accommodating, NOT squashing disability.

It has taken me a long time to arrive at this, because I am not capable of being kind to myself. Because, until I looked at disability a different way I couldn’t see that all my own attitudes were because I saw “normal” as the aspiration. Normal is not an aspiration. I don’t want my autistic son to squash the autism, and pretend to be something else. I want  him to be who he IS, use his one go at life to do something that makes him HAPPY, not use his one go at life to learn how to be the same as everyone else. Like I said, looking at it all wrong.

There are so many times when we are told to reject the harder work person, to walk away from people who are not perfect, but this is stupid. OK, if you want an easy life, with nothing real in it, do that. People, ALL people have good things and difficult things, and some of the good things ARE the difficult things, and making the world accessible so we can share it on an even basis, so that we can SEE the difficult things, and understand them, and value them, and the work it takes to be. Not as inspiration, just as acceptance that, that is what being alive IS. Different, and complicated.

it’s OK to be bipolar, and it’s embarrassing, and it’s horrible, and it’s numb, and sparkly, and angry and stupid, and brilliant, and cruel. It makes me angry that I have to monitor my mood or check my decisions. other people can BE happy, or sad, or scared, or angry, and just feel it, and get through it. But I, and other people with mood disorders, probably not just bipolar, have to monitor all of that. Because happy is a starting point for bright, brilliant, glass, never sleeping, angry, sharp, scratchy. Sad is a starting point for paralysis, numbness, emptiness, pain. See everything as a cause and effect, don’t be TOO anything.

it’s tiring. And it’s OK to be tired. But it’s ALSO OK to talk about being tired because this is what being alive needs to include. This is what it takes to be well enough to be responsible and safe.

But you know what else? Every time I write about being unwell, I always make it sound like a minor inconvenience. And I have been reflecting about that too. And it’s about trust. YES the truth is I DO manage myself well enough to be safe and responsible for my children. They are cared for. Always. but, in order to prove that, am I *never* allowed to talk about what it sometimes FEELS like to be bipolar, or, more simply, to be me?

Like, there are days when I do get up, make packed lunches, drop children at school / wave them off (always remembering to tell them they are loved, because it matters that, when they face the world, they know this.) make sure their clothes are clean and warm, and their home is useable. I can do this, and then go back to bed for several hours because facing the world is an undertaking that is some times way beyond the amount of ability I have.

Being a parent has definitely curbed the extreme edges of my illness. But I know they are still there. I know I still often refuse to acknowledge that I need things. I actually refused, a few weeks ago, to attend an appointment. because I was not well enough to leave the house for more than child collection. Knowing this, and ACTING on this were really big wins for me, and I don’t know if that is understandable?

I try to be aware when I take on projects or have ideas. I am working on several at the moment. That might be indicative of a problem, so I try to manage my time. I get frustrated, because I have *need* to finish, or to do, or to learn, or to write, or whatever, but, I have to dedicate my time between x and y to child care. SO, I see this as my job. I can do the things burning in my mind when I am not at work.

Sometimes there is overlap, sometimes it goes wrong, but that’s the same with anyone’s job.

But now I am back into making it the same, the same, it’s a habit, it’s a way of life. But I wonder how it would be to someone outside?

And wondering that makes me think about other disabilities. It’s not just what you can see. So I have better respect for the “spoon” use. I have a depleted store of spoons myself right now. And it STILL makes me feel like a failure.

I watched “touched with fire” today. I felt able. I have not felt able since I bought it. It resonated with me hugely. it is not a bad depiction of bipolar. I found myself connecting with both main characters. I felt both the sets of feelings, and I felt anger at myself that I HAVE behaved like that. I HAVE done many of those things. I STILL have anger that all films portray doctors as right and kind at all times, when this is NOT true. Sometimes patients are right, sometimes they ARE good at the thing they say that can do. Not everything is delusion and sickness. But how can we know that? Not all doctors care, not all have best outcomes in mind, hardly any have individualised outcomes in mind. So, then I was angry BOTH at the illness driven behaviour which I recognised AND the fact that it wasn’t being investigated as possibly just part of a person.
And then I realised that THAT is where I am. Caught in the middle. Ill, not ill, trusting and not trusting. But how could I be anything else?

 

Learning.

So, today, I FINALLY worked out what it is that constantly bothers me.

Is it the creeping fear and realisation that at some point in the not entirely distant future, it is likely that I won’t be able to see? Surprisingly not.

Is it the dawning thought that I have spent SO much money on an extensive education that I will probably never turn into the career I always dreamed of? Kind of, but, not really. I mean, I don’t want to be someone who doesn’t DO anything. I can argue all I like that children, and not becoming a mental health statistic are some things that legitimately take up my time, but… Anyway… I fully intend to sit down on Tuesday (when ALL the school is back in and start writing a screenplay. I mean, I’ve never written one, but, last time I sat down to write something it was a book. It exists. I mean, it will never exist as a book, because it causes too much harm to people who are not me. But, it exists as a joined together collection of sentences, which is kind of a book. So, who’s to say I can’t write a screenplay? I can at least see where the idea goes? I am AWESOME at ideas. Turns out I am useless at absolutely everything else, so….

Is it that I am still being kicked in my sleep by a 5 year old that snores louder than I do AND grinds her teeth? Irritating as all hell, but, no.

Is it that school is back in on Monday, and I don’t feel like we really had any time off? Distressing, but no.

Turns out the real, if I could get this piece of grit out, then all would heal, sadness, is having devoted my whole life to something that is not real. Having lost the ability to share my life, and thoughts and feelings and experiences in any real, genuine, way. having given up all the connections to give everything I am to one, and have that broken. it’s the single most unfixable thing.

it’s fine to be accused of having sadness at the essence of my being. But, this is an unfair depiction. It probably is NOW, but, this is not a reflection of ME. This is the thing I have been trying for years to fix, to change. But, tonight I articulated it, and I realise that it is not something that can ever change now. So, perhaps it is to accept that sadness IS the essence. And also to understand that no one can accept that. The exhortations to walk away from people who can only bring sadness to your life are real, and people do walk away from that. Perhaps that is what has kept me from Mental health services, having lost irretrievably to part of me that can be connected and understood, and open, there is no high place to go to. How could there be?

I have certainly heard that my overwhelming sadness is not tolerable to others. I am human, and have no wish to inflict such on people, so, having been told as much, would never push any connection, aware as I am that it only hurts people.

But, now, I have learnt where that comes from, and why it is not fixable. it feels hugely revelatory, and somehow soothing, even if it is not fixable. Understanding is reward in itself I guess. To know one is cast adrift is, I suppose, the only way one could ever hope to be something else.

Most people are not Tom Hanks though. Most people in the sea, in storms, alone, will not make it. And, even if they do, then they are found back into a life that doesn’t need them anymore, and there’s nothing they can do about it. There’s nothing I can do about it either.

 

End of Term.

And so, we have made it to the end of term, very nearly.

We were told, 7 years ago, that this particular term would be the single biggest challenge in the journey we found ourselves on.

All things considered, it is perfectly possible that this term could yet become more challenging, I mean, there is a whole week left yet, and in a term that has already included having to escort my son personally to the door of school for his own safety, his first ever selective birthday gathering (his and others), first ever written statement for the police, well, anything could happen in a week!

It is said, by people who know more than I do, but, perhaps not as much as they think they know, that the transition to secondary school is the toughest thing in the regular childhood, and possibly the life of an autistic person.

Now, I don’t know if this is the case. I CAN tell you that the problems we have encountered started before the transition. Moving up to secondary school is a very well managed transition here, with days and visits, and a lot of time devoted to making it smooth and comfortable. Which is helpful. But, school is not life. Something I learnt even before the term began was how dangerous it is to believe a person who has a huge amount of academic ability, has an equal and relevant amount of social, practical ability. Peer pressure is a normal thing, and kicked in hard. But, it’s harder to arrive at a positive outcome if you have failed to provide the practical information and logical risks and outcomes. My top tip, never make assumptions about knowledge.

My other tip, never forget that if you haven’t encountered a developmental stage that usually happens in a younger child, it doesn’t mean that you have sailed through that unscathed due to some super-parenting power. Perfectly possible is the idea that it is a milestone that hasn’t been hit YET, and may be at any time! Like learning that I, as a parent, don’t know something that I haven’t seen / heard. This is something young children learn, when they practise lying, when they pass blame. This is usually harmless, because young children if they are averagely lucky in the UK, don’t find themselves in situations in which the consequences for such a thing are particularly serious. 12 year olds might well face much more serious natural consequences for such behaviour.

It is not really the transition to *school* that has been the most challenging thing. The lessons have been positive. The moving between lesson has been somewhat tiring, but generally worth it for the increased specialism in learning. Although, boredom sets in quickly, which is a thing to watch out for.

The problems have all been about the increase in independence that goes with it. That and the bus. The bus is something neither of us can control, so we fall back to CCTV and trust. Trust is tricky when you have already been let down, and I think that applies to both of us. Still, he is not the one CAUSING the problem, although he is more likely to be on the receiving end. Also, he is a good witness, which is why *I* find it hard to match up his behaviour when he can report something so accurately, with his behaviour when he chooses not to. But this is a piece of learning I would not find challenging in a much younger child.

The school itself is not the most nurturing environment, although, to be fair they have dealt with the majority of our concerns in a way that I felt was positive.

But as we rush headlong into Christmas (which is it’s own set of problems reconciling the very most excited person ever, with the most take it or leave it, but mostly leave it thanks, person as well as all of this new information) I am left with the following thoughts and feelings about the much hyped, and dreaded transition.

1, It was much better than I imagined, in terms of school. It was *much* worse in terms of personal development and independence. I do wonder if it would have been better if I had been prepared for that? Maybe one cannot prepare for that. I don’t know. He is who he is, and that’s valuable, and human, and wonderful. But, his operating system is like a whole other language from mine. My advice? Worry less about academic goals. Worry less about treating everyone equally. Worry less about balancing. Worry more about understanding who his friends are. Worry more about life skills. Worry more about independence.

2 This is the first time I have ever had serious doubts about the possibility of adulthood independence. it is the first time I have ever really seen that our journey towards that is different. It will become more different not less. It is something I will not take for granted, nor will I expect the standard outcome. We must approach it, like everything, as a set of steps, but a set of steps that now *may* be impossible to conquer. It now matters MORE to ensure personal value is intrinsic and is not tied into achievement, work, whatever.

3. My feelings and his are different. My goals for him, and his, are different. This is normal. This has nothing to do with autism. But the additional learning is that, my successful outcome is not THE successful outcome. His successful outcome may be very different, and it really matters to hear that and take that on board, in a real and useful way. Why force him to achieve something that has a different value, or even a zero value to him, even if it’s value to me seems essential?

I do not know if this is *his* most challenging transition, primary school to secondary school. I don’t have the right to say that, that’s HIS challenge. I DO know that this has been, and is, the most challenging part of MY journey as a person trying to encourage an autistic person through life.

It is the first time I have been able to acknowledge, or even to see, that our destination may not be the one either of us sees. I am not talking about that hateful bloody Holland poem. I just mean that, it’s the first time I have been able to see that we are working in a whole different paradigm. The goal is not to make his life “normal”.

*I* cannot shape the goals now. I cannot speak with any authority on any of this now.

I don’t know if i can reach you with my feeling. My feeling is one of being lost. But also, of realising that my being lost doesn’t really matter, as long as I can provide useful help in his quest to conquer his own map.

It’s not the first time I have felt I don’t know what I am doing as a parent. That’s almost daily. It is for many parents. I feel like there are immutables. Things he *needs* to know, or to be able to do. That is certainly true. But, it is not his problem that stops him being able to learn them, it is my problem in being able to impart that information, those skills.  When someone is good at learning, it’s easy to assume that it applies to all things. It does not. Knowing how to know what is missing, and how to put it in to life, I don’t know.

So, we really might not get there. Really. And what then?

Christmas Cards.

Now I have always seen Christmas Cards as essentially uncontroversial. There are obvious environmental issues, and I have no problem with people who don’t give them, for that, or any other reason.

I get them for my children to give to their friends. This has always been easy, and again, uncontroversial. Until now. Now that my eldest is not in a fixed class,  he doesn’t want to send them. Because it’s too complicated. He can’t realistically give one to every person he encounters in school, nor does he want to, and he doesn’t want to give one to people who give him one, because other people will feel left out. So he doesn’t want to give any.

Now, this should be perfectly reasonable, and I have, of course, told him that it is reasonable, and Christmas cards are entirely voluntary.

But, I didn’t envisage how *I* would feel. it matters to repeat that it is NOT about how I feel, but, noticing how I feel helps to question why *I* do things, and how I could be better.

I am worried that it will impact his level of being accepted. I worry that I don’t understand how this works best for him, that I project what I would do, or what I would need. I worry that I don’t know what it is like to be him. I use this to question the actual necessity of many things I “need” to do.

But at the same time, I am listening to the community of autistic people on line, and realising that most of them seem to hate non autistic parents of autistic children, so whatever I say or ask or comment is viewed through that filter. Which makes me question myself even more. Which is fine in one respect, it’s all learning. But it’s hard for me as a person who is still relatively new to expressing what *I* would prefer to do, and how *I* really need interaction to be. it’s hard because I, seem to be programmed for guilt. I understand why that might be, and that it is not always real, but, that doesn’t mean that my culpability is NEVER real.

And, I know that I haven’t always known how to help him. I haven’t understood what it is he needs or what he doesn’t understand. Like when I didn’t know I had failed to teach him what basic facial expressions mean. Like when I didn’t know he didn’t know that films have stories and are not just a collection of cool effects / screen shots. Like a million and one times I didn’t know that he needed help with x or y. So, yes, I probably am part of the evil NT parent band. But no one ever told me ANYTHING about what I could do to help with this. Like I said before, like trying to teach a language you don’t even know exists.

So, yes, they are JUST Christmas cards, and I don’t care if he doesn’t want to send them. I really don’t. But, for *me* it is just another thing I didn’t know, and didn’t know I needed to know, so it might be a whole new stress I needn’t have bothered him with.

Christmas is a minefield for the most grounded and sorted person. Here, it is especially challenging. I don’t ever feel like I know what I am doing. And this past few months, more and more things have piled up to show me that, as a person guiding an autistic young person I know possibly less than nothing. I need to learn more, which means sucking up the NT parents are all completely inadequate, and mostly also cruel stuff, in order to keep learning. But, just for a minute, I also need to be allowed to say that I don’t know what I am doing, and that it is hard (I don’t say hardER – how would I know?).

Maybe there are people who so much know that what they do is the right thing, that they feel confident that the things they do lead to the best outcomes. But all I know is that I am not him, and I must not assume that my best outcomes look the same as the best outcomes for him.

Mostly, I don’t know. Mostly, I am wandering around totally lost, trying to sound confident so that the small people don’t panic.

 

When the words don’t matter.

At the moment, I am in a bit of a slump with online interaction. I feel like there are a  number of problems.

1. People don’t read properly. I include myself in this, probably. People have disagreed with me this week, whilst making the same point I have just made, but, telling me my version is wrong. People have also asserted that I am saying something I have demonstrably not said. I do generally try not to be too bothered by these kinds of things, and, in fact am not particularly upset by it, after all, we all get caught up in the feeling of the news right now, it’s all so horrible and frightening.
2. Speak up about x or y. Mostly this comes up about disability, especially mental health. Now, don’t get me wrong, I used to actually leave my house to go and speak in person about my experience of mental health, speaking up about such things is an important thing to do. But the current narrative online is one that does not reflect the reality. I mean, it reflects A reality, but it is not fair to assume all mental health realities are the same. In all the very visible media pushes, the positive stuff is all around a very small section of the mental health experience. There is still a huge number of people for whom all the media portrayal of them and their experience is negative, for whom speaking out is still dangerous. Telling people the should be able to talk to break stigma, is not enough. It needs to be safe for them to do so. At the moment, it is really not, and people who DO have the media spotlight in a positive way in regard to their mental health need to recognise this. It surprises me that mental health is still all lumped together, like we expect all people with ANY experience to be able to speak on behalf of all other people with ANY experience. We don’t do this with physical illness.
3. Constant disparagement of “Autism Mom” – like everyone with an autistic child is the same, and can only be defined by that. It’s fine to do that. It’s not fine to define autistic people in the same way. I mean, I don’t go in for abusive therapies, I don’t stamp myself all over my child, I don’t restrict him due to perceived (or actual) disability. I guess I have to suck it up, because I am not the minority. I get this, I really do. So, I try to just ask the things I need, and be positive. But, like I recently had cause to say, no child comes with a manual, and if your child doesn’t respond to the instinctive NT things, smiles, hugs, jokes, then it’s like your whole existence is thrown into doubt. Everything you know about communicating is useless. I do not in any way negate the experience of being autistic, in a world where you are very day the square peg being hurt and broken trying to fit into a round hole. But, I do think that it is important to remember, that it can be very difficult and different to parent in an emotional foreign language. It is not a tragedy. It is not even that it is necessarily harder, but it *is* extremely different, and if the people who are autistic are not getting enough support, then the people trying to raise them are getting even less. It doesn’t take a lot to understand that bleach enemas, and training your child like a dog are hugely wrong and should never happen. It takes a lot to relearn everything. Plus, if I as an NT person don’t know what I am doing because I am not autistic, how does an autistic person who is not NT know what I am doing, since they are not NT? I said before, is we BOTH understood more, it would be a lot better.
4. In Group. The trouble with claiming an identity, sticking up for it, making sure there are out group people, is that some people are crossovers. So, maybe it is my age, or maybe I am a nasty, ablist, white woman. I never expect people to do what I have done. But, my experience is valid. As a human being. As a person who, like most other people fits into many groups. Not Autism Mom. Not mental health service survivor. Not mental health professional. Not mother of a preteen. Not mother of a 5 year old. Not left wing. Not anti brexit. Not pro vaccinating. Not disabled. Not an addict. Not white. Not middle aged. Not some questionable reference to sexuality. I am not any one of these things. I, and all other people, are not quantifiable in terms of one of these things, when maybe all or any subset of them is true. Maybe a huge range of other things are true too. When we shut off those possibilities because we have a single issue agenda, we lose so much real person.
5. Exhaustion. Only allowed to be a feature in people with a visibly diagnosable reason. Even though it is the single fastest way to reintroduce myself to hospital. That is not on anybody’s agenda. Doesn’t fit anyone’s in groups.
6. Suicide. There are STILL people who call me names and insult me for saying that suicide is (except in very specific cases) not a choice, and that it is not selfish, and that mental illness kills people. The mortality rates for some mental illnesses are higher than those for some cancers (speaking as a cancer AND mental illness family), and yet this is a grossly offensive *fact*  to some people. I used to get upset by those people. Now I simply realise that, given the state of the country, we KNOW mentally ill people are the first in line to be rejected as human in times such as these. We’re already up to random hatred for foreigners and trying to “other” as  many people as possible.

I hope that I will survive long enough to see the country come out the other side of this. I know that currently, I am on the side that is at risk. I am less at risk than many others, so it is my duty to speak out, no matter the insults. Insults are nothing. Some people are suffering and leaving and dying due to the state of our nation. Already. This, that we find ourselves living in, has never been proven to be the right side of history. It is frightening. But it is not undoing years of progress, it is the evil, smelly, slime of humanity just getting back up to the surface. We are all close to believing that anyone in an *other* group is expendable. Pushing people into suffering is more likely to bring such feelings to the surface, and this is what the government here has done for ages.

I hope that my children can see that people have value no matter where from, no matter disability, or any other thing. I worry that we are on a frightening course, along which many more people will be sacrificed, and we are not safe. it would be safer to not have spoken, but this is not how anything is changed.

We have done better in the past. We have done worse. But we are sliding fast.