On a regular basis, I will have people saying things like:
"Well, we're all anxious sometimes"
"All children fight"
"It's stressful for all parents"
The underlying message received from these comments is a dismissive "stop complaining, we all have the same problems, deal with it better".
So I thought I'd write about a day in our life. As well as my autistic children, I also have neurotypical children, and yes, things can be stressful, but the level of management has nothing on the level that PDA boy needs. My NT children don't have regular violent meltdowns either, which does make things a little easier.
You cannot drop your guard. Ever. If you do, they can sense it and will pounce.
Therefore all times with children present will be spent alert, watching, listening, waiting for the little signs that mean attack is imminent and inserting yourself between siblings in an attempt at damage limitation.
We try to entertain them, play games, go for walks, but again, we must be constantly alert to the little changes that signal one child has had enough, and take action before it is too late.
We need to be aware of how we are talking at all times. Actually, that's exaggerating, we are lucky that PDA boy's demand avoidance does fluctuate with the stress he is experiencing, so at some points he can cope with a certain level of demands, but at other times No Demand shall Pass.
Generally, from the moment PDA boy wakes up, our language must be in tune with his needs. We have several things in place which make this easier, for example, he has two toothbrushes, so instead of "Time to brush your teeth", we have options; "which toothbrush this morning?" "Are you brushing or shall I?"
Options are our friends. Options mean we get things done. Options mean he is in charge.
We have also found our way to get him out of pyjamas and into school clothes. "Do you want me to help, or can you manage?" is enough for him to be indignant and cross that an eleven year old might need help to get dressed, of course he can do it, or grateful that I will help him on a morning when it's all too much. Again, the choice of actions means he has some control over the situation.
The aim of school mornings is to get the bare minimum done with the least amount of stress and noise possible.
If we are on time to school, we have done well.
If we are late, we have done amazingly. Chances are a tricky morning will be a late morning. The fact that I have got him into school at all deserves a medal (or toast and jam when I get home).
A day at school tests our mettle. In the car on the way home, he must be given a chance to tell me all the bad things that have happened, and I must not try to put a positive light on any of those things, as this his his opportunity to get the day out of his system.
If he's had a really bad day, the journey home may be very difficult, and may take a lot longer than it should, as it is not safe to drive whilst being punched, slapped and spat at. On these days we must find a safe place to stop and let the meltdown pass.
Back at home, we try to make sure he has time to do whatever he needs to do, usually lie on the settee watching Daggerwin's latest episode of Farming Simulator. He must not be disturbed.
Disturbance means screaming, lashing out, throwing things.
I will need to sit close by, carefully aware of PDA boy, looking at his eyes, but without making eye contact, to check his anger levels.
Tea will often be served in front of the TV, as stress levels after school are usually too high to cope with the expectation of the family sitting together around the table. Whilst eating supervision is necessary to evade food fights.
Watching TV itself is a battleground as both PDA boy and his two brothers have very rigid expectations of what they will watch, so in order to be fair, we will often timetable a TV watching schedule. This also means that close supervision is needed to ensure each boy receives his fair allotted TV time without another boy switching off the TV, or doing a moony in front of the screen.
We must also be very careful with transitions from one activity to another, as these are times which can trigger an angry outburst.
All this must be done whilst also trying to keep to a routine, but that routine must also be kept fresh. If our routine becomes too predictable PDA boy's anxiety levels rise.
We must also be very aware of leaving things lying around. Shoes not put away become missiles. A water bottle left on a table in the lounge will be sprayed around the room, for no other reason than it is there and impulse takes over.
We use the incredible 5 point scale to help PDA boy to learn to recognise how he is feeling, this means that slowly, slowly, he is learning that when he is at a three (feeling stressed), this is the time to take action. We know from experience that if he reaches four (pre-meltdown) we have to take action, either by taking him upstairs to his room and waiting out the inevitable meltdown, or, if behaviour is too explosive, by sending his siblings upstairs to safety whilst he gets his rage out of his system. I am proud that I can keep my other children safe from his violence, but often that means that my husband and I are caught out by punches.
Bedtime is a case of distracting him into bed. He doesn't like bedtime, as this means school time is close. Melatonin helps, but is still subject to refusal. He is angry that he can't sleep easily, and resents the tablets that help him to settle.
Bedtime is the time when he may easily start screaming for no apparent reason, banging his head against the metal bed frame, punching the walls with fists that do not feel the pain until he has calmed down.
On these nights, suggesting a YouTube video or a game may jolt him out of this, or it might not, we may have to wait out the anger, wait out the heartbreaking sobbing as he begs us to kill him as life is so, so shit.
And then, eventually, he sleeps. Another day is over. We prepare ourselves for the next day, work out what we could have done better, what we did that worked.
We have bad days with our NT child, of course we do, we are all human. But a bad day doesn't even compare with a good day of parenting PDA boy, when measuring stress levels. A bad day with our NT child does not need anything like the same level of management, supervision and strategies we need to successfully juggle PDA boy's complex needs.