Summer Holidays Diary Day 8- 'demand avoidance'

Day 8-

We're having a demand avoidance day today.

Despite only having on his timetable - 'a walk in the woods with the dogs' (which you would think wasn't much of a demand at all) but all seems to be a bit too much for him today for some reason.

So, He's going nowhere today despite all our best efforts to encourage and bribe him out! We've had hour after hour of refusal and repetitive language/hyperactivity so we have given up!

This can be a contentious issue for some families I know, with parents feeling the pressure from friends and family to force their kids to do stuff. It's hard balancing the needs of the rest of the family with the needs of a demand avoidant child. It puts incredible pressure on everyone. And parents can often be judged as giving in, letting the child take control or not giving their child discipline. But believe me it's no where near that simple. So we shouldn't be quick to judge. No one has the right to pass judgement.

It's something we have battled with for years now, knowing how far to push him and when to accept that he simply needs some time to reset his system.

Is it giving in? I don't think so. I have to respect his needs and understand that hidden pressures can take its toll on him and his behaviour is telling me that something is wrong.

So....I'm catching up with the mountain of laundry that's accumulating in the laundry basket! 👕👖👗👚

And we will try again tomorrow after he's had a day to chill.

Mrs M

How daily life drains my sons' engine until it's empty.

How daily life drains my sons' engine until it's empty!

Hi folks, I feel like I need to say sorry as I have neglected you all somewhat over these last few weeks.

But I think I needed a bit of a break as I had done so much writing for other people in preparation for autism awareness month, that I kind of burnt myself out really. I had written eight different pieces in one week as everyone wanted it in by the beginning of the month. It was great and I really enjoyed every second of it. But when I had stopped to catch my breath, I think my brain simply sighed and said “no more!” The fuel tank was empty. I had become sick of worrying about how well my various pieces were being received, whether or not people liked my work, and how many shares it was getting etc....that I was driving myself mad with it all!

I just felt like it was becoming another thing to worry about, rather than something I was doing for pleasure.

So my natural reaction was to shutdown, switch off the engine (and the laptop) and focus on me and the family for a while. It meant that I could refuel my tank. Does that make sense?

I didn’t know how long it was going to take, a few days, weeks, or months maybe? But I assumed I would just know when I was ready to return. And as it happens, its only been a couple of weeks that I have had off now. And I have to say that I actually feel much better for it.

So today was the first time I have felt like picking up the laptop. 

And it’s kinda got me thinking... is this how my son feels when he becomes so overwhelmed with stuff that he just switches off, removes himself from our world and needs to be by himself?

 And he can often take several days to recoup after he has had to work hard in a situation. Almost like he’s refuelling his reserve of energy. Filling up his own tank.

Take this weekend for example. It has been my mum’s birthday celebrations, and we have had several days where things have been out of sync at home as a result.

On her birthday we went to her house for tea. All our extended family were there. We had singing, balloons, cake and lots of laughter. Little man found it tricky but he tried really hard, and he got through it for her and she was so proud of him for trying so hard.

But what we couldn’t see was that a quarter of his tank had been drained as a result.

Then the following night I was up until late making decorations for nannas party with my sister.  The house was full, bedtime got pushed back late and tea was a takeaway that hadn’t been planned. Again he coped really well, and got through all the changes.  

But as a result his energy tank had been drained a little more.

Finally it was the big party night at a hotel. We checked in, and we decorated the room with balloons, banners and pictures. He then had to sit still surrounded by people he didn’t really know, eating a meal at a table he has never sat at before. Contain his anxieties. Leave the comfort of his bedroom. Not play on his PlayStation like he usually does on a Saturday night. Smile at people he feels unable to talk to. Pose for photographs. And sleep in a strange room, in strange bed with lots of new smells and noises to keep his senses on high alert all night - so no sleep.

Inside his tank was spluttering on empty. It had taken all his energy to get through it all without having meltdown that when we got home …. then came the burnout.

His tank was empty. His tolerance was low and his anxieties were raw and seeping out through his body, unchecked and unregulated because there was simply no fight left in him.  

We got home and he didn’t want to move. He couldn't cope with any demands on him at all. And that was fine. So he spent two days recharging.

But the problem came this morning when it was time to go to school. There were tears, huge anxiety, refusal, heightened sensitivities and one guilty mummy forcing her child to school in tears.

It’s not that he doesn’t like school, I know he's happy there. It’s just that he wasn't fully recharged from working so hard to be part of our world over the weekend. And as a result his anxieties were still high, his senses were still super sensitive and therefore his ability to cope was still drastically reduced.

And he knew that in order to get through the day ahead in school, he was going to need to use more energy and effort from his tank. The tank that wasn't ready to make that journey yet - because it was still running on empty.

You see every fibre in his nervous system is so fragile that it takes so much unseen effort to fit into our world, and control himself when being bombarded by sensory overload, that its going to take time to repair and recharge. And today, well he wasn't quite ready. So his defence mechanism this morning was to go into ‘flight or fight’ mode to protect himself. His refusal and panic this morning was his way of telling me it was too soon. 

Just as I didn’t know how long it would take me to feel recharged enough to put pen to paper again, for my son it's no different . Who’s to say how long his body will take to recover and recharge fully? Not me that's for sure.  And I don’t think he really knows himself to tell me. He just feels better in his own time, and I have to follow his lead. Today I pushed him too far because I felt the pressure to get him into school.

But we should never take for granted how hard it is for kids like my son to fit into our world. And how long it takes for them to recover. I mean in my case it took several weeks until I felt ready to do something I love – writing! Never mind facing a day at school which is full of challenges and struggles.

So imagine how hard it must be for children on the spectrum that often don’t even fully understand why they feel like they do in the first place. They need us to be patient and understanding and to look beyond the behaviour to understand what they are trying to tell us.

Their engines have to work so much harder than ours just to keep up, and as a result that must drain their energy and tolerance levels so much faster too. So it’s understandable that they will need that bit need longer to recharge fully and recover.

Time and patience is what they need to refuel.... well that and a whole heap of love!

That is why when my little man walks through the door tonight, I will make sure I tell him how proud I am of him for getting through the day. I'll make his favourite dinner, and then I'll  give him the space and time he needs to top up that tank!

Mrs M x

Demand avoidance

So weekends can be somewhat tricky in our house depending on how the little mans week has gone. Usually by Friday night he has had enough of the world and wants to escape to his room for a recharge of his batteries ( I know the feeling!). Sometimes he refuses to get dressed, do his teeth and leave his room at all for the whole weekend......not often, but its usually when he is in the middle of a really anxious period, and he becomes so demand avoidant it cripples him, and as a result I can become a prisoner in my own home

He has this sleeping bag that becomes his cocoon for the weekend, he walks around in it, sleeps in it and sits in all day if he possibly can! If I have to nip out to drop his sister off somewhere I have to persuade him he has no choice but to come with me .. and then he will hop out in this flipping sleeping bag and quite happily sit in the back of the car all huddled up in it! I dread to think what my neighbours must think if they catch sight of him sliding along the footpath like a slug to the car.

The sleeping bag slug suit!

I often find myself negotiating the days activities on his timetable..... as when he really doesn't want to do something or is too anxious to even cope with it I really need to psych myself up for the fallout if I try to and force it. We have had many a family day out that's started in disaster before we even reach the car simply because he can't cope with demands of getting ready. I need full body protection at times, and sometimes when I simply cant face the stress I don't even bother trying. Its taken me years to get confident enough to not care what people think now when I back down and don't force it...... but I have my own sanity and his sisters to think about too.

My sons demand avoidance takes many forms from the annoying and quite frankly irritating to the damn right dangerous. .....and I know its all anxiety driven. Take today for instance. It was my nephews tea party and he was really getting fretful about going. It was all timetabled in on his visual schedule, so he was prepared about who would be there....how long we would be there..... you know the basics based on what I knew! But as the hour approached his behaviour began to ramp up. You see for him going to a party makes him as nervous as if we were going to a job interview I reckon. So much uncertainty.........

Where will I sit? What food will there be? Who will want to talk to me? What if I need a wee? What if there is a funny smell? What will they do? What music will be playing? Who will sit next to me? Will they want a hug? Will mum talk for the whole time and ignore me? Will the other kids be too loud? I don't know what to say?.....
The list of his worries, if he could verbalise all of them all, would be as huge as my weekly shopping list I think. I also think he has an exaggerated perception of the possible threat. So to him being a few minutes late or making a mistake ..well its like the end of his world.

So in order to protect himself from all this uncertainty and worry, my sons natural reaction to this huge anxiety is to avoid the demands as much as he can to keep himself safe. He displays this with challenging behaviour, which to an onlooker appears like he is a naughty kid which couldn't be further from the truth!

 Today we had tears, panic, refusal to get dressed, fretting, hiding in the slug suit, wiping off the schedule from the board and then finally swearing. On really bad days it has led to self injury and a mum on the verge of a mini  breakdown.I had two choices this afternoon.....I could continue to force the demand to come to the party or I could accept the fact that he was obviously in no frame of mind to cope with what I was asking him to do! Today because my husband was off work I took the easy route out....... some may not agree with me but the alternative would have meant  his sisters would have had a dreadful time, I would have been stressed, battered and bruised, and my son would be exhausted in the process... the party would have been no fun for any of us (that's if we had even got to the car in one piece)

In order for my son to access anything he has to feel safe and in control, and in situations like going to school of course its absolutely necessary to he learns to overcome his anxiety, but that's a very long slow process that involves a lot of support for the adults helping him. As a general rule if my son is displaying challenging behaviour its because as the adult I have put him in a situation he doesn't feel safe in, or he doesn't feel he will be able to cope with.. so he panics and either tries to run away or lashes out and becomes even more rigid in his thinking.

So you know what ....  I think regardless of what others may think, I have to be the one who is flexible. They are not living my life so have no idea what the stress levels can become like in a family like ours. I am learning to pick and choose my battles for the sake of the whole family not just my child with Autism. So today me and the girls went out for a couple of hours, had a lovely time at the party, and my son was happy at home with his dad. Its not giving in, or being soft, or letting him walk all over me.

 I would love for us to be this perfect family unit that goes to family gatherings and parties all together and it would be all sweetness and roses and well, normal ! But for my own sanity I cant dwell on that too long cos it would upset me if i thought about the 'whats ifs.' This is my reality and I have to accept that sometimes its the right thing to be flexible, and keeping his anxiety low is important not just for him ....but for me and the whole family.
After all its no fun for anyone living in the middle of a battle zone day in day out.