If you have an autistic child, current estimations say that you have a one in five chance of having another. To many of us with autistic children, this comes as no surprise, most parents of autistic children I know have second and even third children who are also autistic, others have children who are decidedly quirky, although they may not meet the criteria for a diagnosis.
This often means that plenty of advice, aimed at parenting one autistic child, can be more difficult to implement.
Now we don't have school to manage, our biggest challenge is having two PDA boys together. Individually they are more receptive to the various PDA and ASD strategies that we use, when together it is far more difficult to manage their anxiety and to reach a point where strategies can take any effect.
Neither boy tolerates the other well. I believe this is due to a few things. Sensory overwhelm, as both boys are both hyper and hypo sensitive to noise - other people's noise drives them up the wall, but to manage this, they make lots of noise. Various bird calls, whistles, grunts, screeches, simultaneously pissing each other off whilst trying desperately to make the other stop. Anticipation, as both boys wait for the threats and insults to begin, and vie to get in there first. Anxiety and anger as neither likes being treated in this way, understandably.
I've been reading Ross Greene's Lost in School (which is brilliant by the way, I will be reviewing it in the near future), and trying to work on my Plan B skills with both boys, trying to encourage mutual respect and fewer fight club moments. So far I'm having no success, and I suspect I'm not alone.
I have often asked online for advice as to how to get to a point where I can manage both boys at the same time, replies are usually from parents in the same boat, I have yet to find any advice that actually works (although it's early days with Lost in School, which I will persevere with), apart from keeping them separate, which is easier said than done when I'm alone with both whilst my husband works, and both, despite having their own rooms and space, seem to want to be together all the time.
Even the Cygnet Siblings course that I attended a few weeks ago, which I had great hopes for, barely acknowledged that autistic children very often have autistic siblings, and instead focused solely on the effects of autism on neurotypical siblings, and sadly when parents were talking about the issues with their other children, advice tended to follow the line that these children were copying the behaviour of the autistic child. Whilst this is possible, the genetic risk factor shouldn't be ignored, and I strongly feel that there must be some collection of advice available for those of us who have largely neurodiverse families.
In an ideal world, what I would like is to produce a list of sibling strategies, both proactive, long term strategies, and some heat of the moment "Aaaargh, what the hell do I do now" strategies.
Thinking on my feet, being inventive and humorous are not things I'm good at, I'm a planner, I like to have methods at hand to adapt to our needs, and this is where you can help.
If you wouldn't mind, and particularly if autistic sibling difficulties affect your family too, it would be great if you could share this post and gather any helpful ideas, book recommendations etc and post them on my FB page (The PDA Soapbox). I really need some fresh ideas, and I'm pretty sure there are others who need the same.
In return, I will collate this information in one handy post, referencing these tips, linking to books and resources. In helping me out here, hopefully I can help you too!
Friday, 5 May 2017
It's been just over three months since PDA boy was officially deregistered from school.
In that time we've seen a big change from a tense, angry boy to one who is slowly relaxing, is now happy and willing to visit his grandparents to go for walks, to cook fish, to hunt for frogspawn in their pond, this is a far cry from the awkward boy who I had to bribe to visit them occasionally! He is also happy to drink out of mugs that aren't officially his, something which would have triggered a meltdown not that very long ago.
So how about education? How are we getting on there?
At first glance it would appear that we are doing not very much. He is still very much settling into this new routine, he is still angry on Sunday nights in preparation for school the next day, then remembers there's no school and ends up having a mini-meltdown with the relief.
PDA boy is very keen on scootering at the moment. YouTube videos of choice are mainly of people carrying out various impressive scooter tricks, tutorials so he can learn to do tail whips, bar spins and other tricks with odd names. Over the last few weeks, practicing these tricks has had hidden benefits for PDA boy, ones which I feel are going to play a big part in getting him ready to tackle some more academic topics one day.
We are lucky enough to have discovered a brilliant skatepark locally, a concrete haven of ramps, lumps and bumps.
Our first trip a few weeks ago was uneventful. A terrified look and "I can't" summed up the time we were there. He attempted a couple of the lower ramps, then we went home.
Within the first four weeks, he practiced these lower ramps and even started some simple jumps. It was becoming clear that for every small step of progression there needed to be some intense coaching, done in a way that avoided demands. Each small manoeuvre needed to be broken down into smaller and smaller steps, encouraging and carefully hiding praise into acceptable phrases that a praise-avoider can cope with.
Going to the skatepark most days looks like we're both avoiding work. It's easy to load up the scooter and drive to the park, and we like an easy life, but we're seeing first hand that allowing PDA boy free access to something he enjoys is having some unexpected benefits.
After deregistering a child from school, it's very important to allow them settle into a routine, to "recover" from their years at school. PDA boy's time at school, both primary and his short secondary career, were not positive experiences for him. I can't say that school broke him, we didn't allow it to get that far, but it certainly damaged him. We are very aware that right now PDA boy needs space, a chance to relax, time to learn for himself who he is.
Regular scootering is giving him the space, the chance and the time.
He is pushing himself to improve and this can be tricky, sometimes these internal demands cut short our sessions as he can't bear the pressure he has put on himself, but gradually we are seeing increased willingness to follow instructions, to allow himself to be coached briefly, and we are seeing slow but steady progress.
Anxiety can be limiting, but spending this time with him allows me to more accurately spot the signs and consequences of this anxiety, which in turn means PDA boy can learn himself how to overcome it if he chooses to.
Scootering and scooter ownership has led PDA boy to learn scooter maintenance. He is never parted from his trusty allen key, constantly adjusting handlebars, clamps and wheels. Keeping his scooter dialled (whatever that means!).
Scootering has brought added unexpected benefits. Occasionally my older son joins us.
Usually PDA boy and Brian together is a disaster, neither can tolerate the other, homelife is usually incredibly difficult, trying to meet the needs of two very similar boys who appear to set out to make life miserable for the other, and resulting in a never ending loop of doom.
At the skate park though, we have a temporary but blissful ceasefire. Both boys will take turns on the scooter, both will coach each other without the usual insults and jibes. These are the moments that remind me that it is all worthwhile, that there are rewarding times.
Whilst this pastime may not immediately strike anyone as academic, it is enabling PDA boy to get into the good habits of persevering and accepting instructions, and it's enabling me to work out how best to reach him when he is ready to branch out and tackle some more traditionally educational topics.
Scooter school may sound like a cop out, but so far it's working wonders for this family.