Yesterday I attended the first session of a series of Cygnet training.
This is a six week course for parents of newly diagnosed children.
The first thing we had to do was complete a form rating our confidence levels in managing our children.
I am confident that I can fairly accurately recognise PDA boy's moods and triggers, we know which activities will help to calm him down. Don't get me wrong, things are difficult, we are human, we get it wrong, but hopefully we learn from those times. On the whole though, we recognise what we are dealing with and in general we are heading in the right direction.
I also have several years of intense autism research under my belt, as I desperately sought answers for my son's behaviours, so I'm aware of the basics.
I filled out the form honestly, stating that in most areas, I feel confident. Which I don't think the leaders of the group will be expecting. They expect to see low confidence levels which grow over the weeks.
We know that during school holidays, when we can tailor life to suit our childrens' needs, things calm down, apart from the odd day when everyone decides that constant insults and wind-ups are fun. (They're not fun).
Our problems are exacerbated during term time when PDA boy holds everything in and lets go once home.
These are the times when, despite knowing how best to handle him and which strategies help, we don't make progress, we are firefighting, battling the flames as new ones keep starting.
On top of this, there is also the need to advocate for my son to people who simply don't believe there is a problem, I understand why, when my son is a completely different child in school, but it is frustrating that his diagnosis is being largely ignored.
I'm not entirely sure why support and understanding is so hard to come by. I have some ideas:
1. They cannot get their heads round the fact that the child they see in school could possibly be the same complex child that we love.
2. He doesn't pass the threshold a child needs to in order to qualify for support.
3. Money, money, money.
To address these points.
He has a diagnosis which accurately describes his difficulties, and he is also a child outside of school.
To apply a threshold like this is to show a complete lack of understanding for children who mask, who may actually be a long way off their potential.
It's very short sighted to think that withholding support is not going to lead to a greater need for money to spent on our children. I also believe that for our children who mask, support would be very subtle, would require no training as such and therefore probably wouldn't cost a penny, so it boils down to an unwillingness to believe what parents are saying which, whilst frustrating and difficult to deal with for us parents, ultimately will be more damaging to our children. Timely support could mean that our children can successfully access education for as long as they need or want to. Our children may avoid exclusions and costly interventions. Support could mean an increased chance for our children to grow up into well adjusted, productive adults.
School life for my son would be much easier if his teachers took a few minutes to learn a bit about PDA. I'm not expecting anyone to spend hours studying documents, attend many training courses at great cost though, there are some very simple methods that anyone could understand.
The things that would make PDA boy's life easier, and many others like him, would be a shift in attitude, acceptance that what you see isn't what you get, simply taking on board that most of his behaviour is there for a reason.
Understand that jokily insulting him will result in a meltdown at home, understand that simple language tweaks and offering options can help him to feel much more in control. If he is behaving in a way that looks silly or naughty, understand that he is probably feeling anxious about something, or overloaded. Send him to do a job, take some paperwork to the office, go and fetch some water for the teacher, anything that gives him a brief opportunity to decompress.
Be clear with him. We have had countless meltdowns when he has been told off for something that he doesn't know he's done, and the times when he has asked, the reply has been "I don't need to tell you what you've done, go and think about it!"
The behaviour he's being told off for is probably a result of anxiety, so he probably hasn't a clue what he's done. If you want him to know that being rude and defensive is wrong, explain that to him and offer him the chance to go and cool off a bit.
Cut down on demands. Give options.
If there is a query that could go through me, ask me, don't bother him with it as it will add to his anxiety levels.
I try to be prompt with payments and permission slips, but if I'm late please ask me, not my son, as he will interpret your quizzing as a telling off.
If there's a problem with his lunch or uniform, something that ultimately will be up to me to deal with, please ask me.
This image is a mindmap, found on the PDA resource website (clearer version found in the PDA resource, link at top right corner of this blog page).
This has made such a difference to us at home. It's not difficult to follow, and once you get the hang of it, using it is simple. My son doesn't need 1:1 support, but just understanding him and accepting that PDA is a real thing, will make a huge difference to his stress levels.
Teachers may not see how a day at school affects him (although I am more than happy to provide evidence) but I can assure you that throwaway remarks and a build up of little incidents throughout the day leaves my son raging and struggling to cope, and can mean that a normal family life is non-existent.
I find it difficult to get my head round the fact that I have been honest about my son's behaviour, open about his diagnosis to the appropriate people, yet there is so much resistance to believe us and to attempt to use simple, free techniques that could make such a difference.
My son is his own worst enemy, through no fault of his own. Masking means that his needs are not being met.
When the strategies that could work (and do work at home) are so accessible and simple for anyone to carry out, I am finding it hard not to resent the people who will not acknowledge them, or who insist we continue to look for answers explaining our son's behaviour.
We have the answers. We at home have the evidence that PDA boy has PDA, and that PDA strategies work.
The biggest support for the child who masks is surely for anyone working with that child to listen to their parents, work with them and finally, please God, acknowledge that we understand our children and can play a key part in them reaching their potential.