Why is communicating impossible?

All I said was something along the lines of “we need to word it a bit differently than that”, it definitely started with “we” and not “you”. I’m clear on that because I actually thought about it for a moment before I said anything. I thought really hard about making sure it didn’t sound like a criticism, or accusation, or something about him rather than us.

He heard an accusation though. Another accusation made by me. Another accusation by me that he is horrible or doesn’t ever get it right. I make it impossible to talk about anything. Because I always say the wrong thing, I always accuse him of being a horrible person.

After 25 years why do I still think he is horrible, why an we still not have an honest conversation about how horrible our life, is because of our autistic 17 year old, who makes life “abhorrent” and impossible. Because things need to change. We’ve tried making our 17 year old change, we’ve tried letting him be without pushing him too much. But neither works, so we need to find another way, but we can’t discuss it because I make it impossible.

“I am not your mother” thrown at me in anger. My mum and I have an interesting relationship, which I only recently found out/realised what a little narcissistic. That impacts my behaviour and how I see myself, and how I react and interact with others.

I’m tired of it being so hard. My teen is unhappy. My partner is unhappy. I am sad.

Communicating seems to be so. fucking. impossible. Truly, stop the world, I want to get off. Living this way is too hard.

The child of a narcissist

Parenting an autistic teen is hard. Things calmed for a while, and then it all exploded again. Was it calm and ok until then, or was it all a facade? I think possibly the latter… but I didn’t realise.

The home is explosive, walking on egg shells. The teen wants to be sociable and independent. It’s all our fault he wasn’t when he was younger – apparently. He’s out, staying at friend’s houses, we don’t know them, but what we see makes us nervous… I was always nervous of them but was told I was being a snob but now it’s not just me who feels that way, but not the teen obviously.

We sought counselling, to be better parents. The teen doesn’t want to come, those people can’t help him – based on his previous experiences.

We explore all sorts of things. Why do I cry?! It’s so annoying for the teen’s dad. I’m too emotional, but I do cry, I feel threatened when people get angry, and I can’t think, my brain shuts down. It’s not necessarily shouting, but the tone, the expression. We discover things from my upbringing, I thought only my sister and brother were impacted by my mum. That’s not the case, I am learning now. But reading about what it’s like to have this kind of mother, I find that it almost always happens that narcissistic mothers produce children who become narcissistic parents too…

I’ve been told by my teen’s dad that I am vicious with my words and I am a terrible parent, my mum says I am hard…

I have damaged my child haven’t I? My words and way of parenting have damaged my child. I don’t know what to do, but I think this might all be my fault after all, and I don’t know what to do with that. I thought I was doing the best I could, doing the right things, but I’m not sure now. And the more I think about it, the more I doubt myself, my thoughts and everything! I am so confused.

It’s that time of year again

Christmas has always been a tricky time of year, a lot of anxiety and stress. The build up as we count down to Christmas Day is pretty awful. Presents are on the way, the anticipation is literally so fraught with anxiety.

We make Christmas as low key as possible, but the whole world around us is counting down to THE DAY and it’s pretty much impossible to avoid it altogether.

We keep things very simple these days. No mountains of presents, nothing that special food-wise, just a day where we try to enjoy being with each other and make it just like any other day.

Last year was a disaster and I’m honestly nervous of how we will get through this year. I really want the whole time of the year to be over so we can just be back to our “normal”.

Apparently we are having KFC for Christmas lunch! I personally will not eat it, but the advert was heard on the radio and my boy thinks it’s an epic idea to have KFC for Christmas lunch so that’s what we’re doing lol How bizarre!

See you on the other side!

I heard your panic

I heard your panic
I knew it couldn’t wait
Dragging me violently and suddenly
From my sleep

Your face
Stark and white
Your fear so harsh and jagged
So clear to see

My darling child
Striving to become a man
Struggling in the quagmire
Of being a teen

Your mind is sharp
Your brain is unique, with its autistic twist
Sometimes it fights you
And makes you break

You stand there, dripping
Your blood, deep red and running
A cut so deep
And hard to control

Total body shakes takeover
Wide staring eyes beseech me
I’m sorry! I’m sorry!
I didn’t mean this!

Make it stop, can you?
Don’t let them take me away
I’m sorry! I’m sorry!
I didn’t mean this!

Overwhelmed by your thoughts
A mistake, no understanding
Of how these things
Can go wrong

Blood, mess, tears
Scarlet blotches on tissues
Drops on the floor
Alone at night

Steristrips and bandaids
Dressing pads and tape
Keep the pressure on
Make it stop

Take a breath
Tears running silently
The tremors of your quaking body
Your personal earthquake

The shock still there
In those young and innocent eyes
Confused and horrified
By the reality

We’re still here
With the wounds that show
And the shock waves inside
That don’t let go

Your breathing slows
And gravity pulls you down
A slow and exhausted slumber
That holds you safe

Trust is not simply earned

I have realised this last couple of days that trust has to be freely given, it is not simply earned.

No matter how hard you might try to earn someone’s trust, if they are not willing, or able, to give their trust, you may never get it.

Until now I’ve blindly gone through my life thinking that you earn someone’s trust by your behaviour. You behave well, give someone no reason not to trust you, and ta dah! you have their trust. But that is not so.

If someone has had something happen to them in the past, that has rocked their world enough, they may never trust again. Or they may find it hard to believe that their trust is safe or justified, and therefore keep withdrawing it.

I think this is what is happening in my life.

My partner has often said things that make me think, in general, he doesn’t trust women. He appears to have this belief that women are always looking for a better man. And by better, I think he means more financially secure, or seen as someone “high up” in society. When I question his distrust of women, he denies it, but his behaviour, to me, says otherwise.

When we emigrated a few years ago, I went through a period of feeling a bit lost. My children and my partner were at school and work, and I was at home, wondering what to do with my new days in my new life. My old life consisted of seeing friends and my mum quite often. But they weren’t here. There was no-one here that I knew, I had no roots… I struggled for a bit. My partner didn’t get this, he took my feelings and decided they must mean I had been having an affair in our old country and that I was missing this person. I honestly don’t think he could have said anything that surprised me more. He doesn’t miss his old friends or his family – he openly says that he doesn’t care if he never sees any of them again.

Since then, in the last few years he has again, a couple of times, asked if I’m seeing someone else. I feel stunned, I think. I’m not really sure, but I’m at a bit of a loss as to what to do about this.

I don’t go out much, we have a small circle of friends that live close to us, but I don’t tend to “go out”. I turn down most invitations, and don’t do the “girls night out” thing. Not because of my partner, but because it’s just not really my “thing”. I am involved in a couple of small charities, they take a bit of my time each week, other than that I walk my dogs and look after the one young teen who still lives at home.

Every so often I make an attempt to do something for me, for my health – walks, exercise classes… but these often get interrupted by dogs/children and then, my partner starts to make comments about how I am “always out all day”.

I’m fairly confident some of this stems from an event in his family when he was around 14 years old. His mother had an affair. They are a loud family, and I get the impression that this time in their family involved a lot of shouting between his parents. His parents are still together now, a long relationship that started in their late teens. However, my partner’s view is that his father should have kicked her out. Not only did she have an affair, it was with someone who was no better than his father. This has almost certainly had an impact on my partner’s views on marriage too. He says, in conversation with me, that you give everything to someone, you get a house together, have children, and if you also get married, there is nothing left after that other than divorce. His behaviour says “if you don’t get married, you can’t get divorced” which is of course true! But I don’t think the thinking is that logical, I think it is a way of protecting himself, of not giving too much, trying to not be vulnerable. To his friends he says that marriage is outdated and just a piece of paper that means nothing, and is based on religious rubbish that he doesn’t believe in.

What do I do with this? I know I cannot “earn” his trust. After nearly 23 years he still doubts me. I have realised this is not about me, or my behaviour. But I don’t know what to do.

Do I need help?

That’s the question, do I? My partner think I do. He thinks I’m not coping and my mental health is deteriorating. I share things on Facebook and he thinks they are a cry for help. He tells me that social media has been proved to damage the mind.

These comments make me doubt that I am coping with the life we have, that I am not coping well with the challenges of looking after our child. Of course I spend a lot of energy thinking about and doing things related to our now 15 year old. He’s primarily hiding in his room on his computer and only wants to each rubbish food (that’s not a new thing). He is on medication and is struggling with life, he self harms. Of course I think it’s reasonable to use a lot of mental energy thinking about this and trying to help him.

But do I need help? Do I need to see a counsellor or therapist? I don’t feel like I do – I can’t see how it would change anything. I share things on Facebook and other places because I think they help people see what life can be like for other people, I think it’s good for people to talk about these things more and know that it is hard. I think it’s good to be open about how hard it is. I don’t think it needs more than that… but am I hiding? Am I in denial? My partner’s comments make me doubt and question myself, and that is confusing.

And then we got a phone call…

Christmas is always a tricky time for our kiddo, most celebration days and times are stressful. We no longer celebrate most of the days – Mother’s and Father’s Day, birthdays, etc because it gets too hard. Our kiddo wants those days to be perfect – 100% perfect – and if any emotion than pure happiness creeps in, he is devastated and thinks the day is ruined. Sadly, he always feels that it is fault, that somehow he did or didn’t do something that could have prevented this. I guess it’s at least in part due to his inability to understand his emotions and those of others, he can’t read facial expressions well. Anything that isn’t overtly and clearly happy, is assumed to be cross or unhappy – there is nothing in between.

This year we decided to keep Christmas really quiet and calm, even more so that previous years. Presents were kept to a minimum, no massive build up and Christmas Day we were going up to our neighbours for lunch. We’ve been on holiday with them and spend a lot of time with them, so it was an easy thing to do, and being so close by meant our kiddo could escape back to his safe space whenever he wanted to. It all went pretty well and there were no dramas.

Boxing Day was just as calm, we popped out for a little while but nothing much was happening and we actually commented on how peaceful and relaxed our Christmas was, we thought it was probably the most peaceful Christmas we’d ever had. Our kiddo had a new scooter and was out with his friends late in the afternoon/early evening and everything was just so calm! We were feeling really pleased that everything had gone smoothly and our kiddo seemed to be having a happy relaxed Christmas. And then we got a phone call call from our neighbours.

They’d been out for the day and were driving home when they saw our boy standing in the road with cars driving round him to avoid hitting him. No one stopped but thankfully our neighbours did. They’ve know him for about 10 years and know how hard he’s found things. They called to say they were talking him down from his very upset state and were going to bring him home. He was trying to get hit by a car so he could die. He’d been self harming a lot and we knew he’d been struggling with anxiety. We’d been asking for him to be seen by a counsellor at YSS for a few weeks, but they didn’t think it was urgent enough to get him in quickly. They’d let me know when they could fit him in.

But we thought Christmas was going well. I can usually tell when he’s wired and things are escalating for him. I didn’t see this coming. It broke my heart to find out that he was feeling so messed up with life that the only thing he could think to do to make it all stop was to kill himself. His intent is always to make the horribleness stop. He can’t understand how he feels, he just knows he feels awful and he wants to make it stop.

We ended up at EPS. Of course they don’t know about autism. They see the kid who wants to die, they don’t see the autistic person who is struggling to understand the world, and the only way they can see to make the confusion stop is to stop living so they don’t feel the confusion. They don’t understand that really, all these kids want is to understand the confusion, to un-confuse the thoughts in their heads.

Their answer, after sitting in EPS for a few hours, was to take him home and sort out our parenting. Be tougher on him. I’ve tried tougher in the past. We’ve put in rules and consequences. It’s not pretty, and it’s certainly not the answer. And thank goodness since then we did spend some time with a behaviour support specialist who really did understand our kiddo. Their approach was far better. We are waiting for them to be available again… we’ve been waiting since August last year. Mental health support and help for our young people is woefully inadequate. In the meantime, we sit and walk on egg shells, ever cautions and watchful for what happens next.

Some days…

It creeps up on you
Kind of unexpected
But it’s always lurking

You think you’re doing ok
Things are under control
You’ve got it nailed

But then
When you’re not expecting it
It comes sneaking back

Like a heavy cloud
It sits on your shoulders
Weighing you down

Making you slow
Squashing you flat
Stealing your energy

They call it depression
You can’t change it
There is no magic button

Watching the world
From inside your cloud
Waiting for it to clear

Everything is hard work
Even loving your people
Feels almost beyond you

So hard to explain
Hiding and pretending
To be like everyone else

The shame of giving in
To this thing 
Over which there is no control

No snapping out of it
Just sinking with it
Until you rise again

Denise Ives

Ups and downs

Things have’t been great. Our child is struggling. Nothing seems to be helping. It’s all so random and all over the place. There’s always been a cyclical element to how he is, but I can’t work it out, it’s not a consistently regular thing, and I don’t know the trigger is. I do know that if he is super happy, it won’t last. There doesn’t seem to be much of a middle ground. Super happy or super sad. The down is lasting longer at the moment, and he’s been cutting his arms again, a lot.

Fortunately we had a paediatrics appointment last week. We’d discussed that he should consider seeing a counsellor but he was adamant that he wouldn’t. They don’t understand him but they say they do, and he hates that. He says it’s a lie and it’s stupid, and they can’t understand him because they are not him. That logic makes sense to me, but I wonder if he’s blocking them? I also get that it’s scary. I would find it pretty much impossible to talk to those people too.

Anyway, he saw a registrar and then his usual paediatrician, he talked to them alone this time. He agreed to see a counsellor, so long as it’s not the guy he saw last time. The guy he saw last time is a completely awful individual. Interestingly, the paediatrician seemed to agree! The first appointment should be in a couple of weeks.

Meanwhile, I don’t think I’m coping well with things. My body hurts, it hurts in ways it hasn’t for a while. It’s impacting my life, it’s making me sad and tired. Or is the sad and tired making my body hurt? I had been eating very well, no toxic junk, but the last couple of weeks sugar cravings have come back, and I have succumbed a few times! Man that doughnut with cinnamon and custard cream was good though! My eating isn’t THAT bad, just hasn’t been as good as it was.

A sponge or a mirror?

The last few days my kiddo has been struggling again. I thought we’d got things on a more even keel with a slight increase in meds at the beginning of August, but this last week it has all come crashing down again and I’m really not sure why. This week saw him leaving the house, sending me messages asking me to look after his dog. His intention, apparently, was to walk in front of a car. I don’t think he really wanted to, just that his emotions and feelings were too big for him to deal with. It terrifies me though.

He’s been going out a bit more, gaming less. Hanging out with friends scootering. He says he doesn’t know where he fits, he doesn’t “know” but he can’t explain what he means exactly. He will not talk to anyone – he doesn’t like psych people as they ask “stupid” questions and don’t understand what he’s on about, but say they do – “I understand how you feel”.

This morning the weather is grey and dull, and it matches how I feel. I feel defeated by life, I can’t help my child, I can’t make it better, and I am unable to properly understand what he is feeling. I feel like a very tiny row boat in the middle of a big stormy grey sea. I don’t like that I can’t maintain a level perspective, that I can’t maintain my own equilibrium in the midst of my child’s storm. Am I a sponge, absorbing his pain, or a mirror reflecting it all back at him in the worst way? I hate that I can’t be rational and reasonable when he is like this. It certainly isn’t helpful for him.