Sunday, 19 February 2017

Getting through the rough times.

Things are difficult at the moment, not so much with PDA boy, he is happier since being taken out of school, but his older brother isn't ok at the moment and I'm finding lack of alone time tricky.

This week has seen meltdowns from both me and my oldest, and times where I feel I have hit rock bottom (although at some point I'm sure I'll look back and see it in a different light).

We're not sure what has led to this, but having spoken to my husband I have a few ideas.

Our oldest (I think I've mentioned that his nickname at home is Young Brian Blessed due to the booming quality of his voice!, so for the purpose of this blog, I'm going to call him Brian) most probably has PDA too. We only recognised this after I attended a presentation by Dr Hilary Dyer (an ed psych who specialises in PDA). Until then I assumed that PDA was synonymous with violence, and Brian, although he can be verbally aggressive, is not violent at all.

We have years of evidence of something being different, but never quite enough evidence to do anything about it, and like so many parents' experiences with schools, we were assured for over ten years that Brian was lazy or simply being a boy, and we didn't know enough to challenge that.

We noticed several things from an early age which we attempted to share, but were dismissed (familiar territory!).

He couldn't wear certain clothes, anything too "hard" or with buttons was out.
He lined things up (even potatoes at one point)
He couldn't join in at parties, he would be the child playing with toy tractors in the corner as other children were playing games.
There was evidence of processing differences, if he was given too much information he couldn't retain any of it, he had difficulties reading, which we were assured was pure laziness in his part and lack of effort on ours.
He found writing and using cutlery difficult, which we know now to be indication of fine motor issues, at the time we were blamed so often for not teaching him these vital skills.
He could identify car makes by their wheel trims and lights from a very early age (age 2 if I recall correctly), now at 16 he can tell you the year a vintage engine was made by the shape of specific small parts, yet his reading skills are still lagging.

Since he has been out of school, almost a year now, we have been able to see more and more clearly the things he struggles with, the things we spotted as a little boy have carried on and, if anything, have intensified. Wearing limited garments has become having only two sets of clothes he can wear, if we buy new tracksuit bottoms it may take months before they are an acceptable item to wear regularly, as they don't feel right. The phases of making noises continue, and recently have become much worse which has prompted him to ask us for help, which we will do our utmost to do, starting with a visit to our GP and a possible referral to see if a diagnosis can be made and appropriate support put in place.

I suspect that the recent intensification is down to PDA boy being at home all the time, they don't get on, both have a love of practical jokes and insults, which neither enjoy being on the receiving end of, so life at the moment, when they're together, is an endless loop of doom (description of which can be found in The Asperger Children's Toolkit by Francis Musgrave), this means that everyone's nerves are frayed, including the two boys, who seem unable to stop this endless cycle of wind ups and meltdowns. When my husband is at home we can divide and conquer, when he's at work we do what we can to survive the day.

My own mood does not help things. I am now a week into a lack of sleep phase. Bedtime arrives, all is quiet in the house and my brain wakes up, having been sluggish and unable to function efficiently all day, all of a sudden it is capable of mental acrobatics which means I cannot switch off. When I eventually sleep it's not long before my brain is nudging me again, urging me to dwell on anything and everything that may have happened, or might happen at some point in the future, or, realistically, will never ever happen, yet it requires hours of hyperfocus and leads to me being chronically tired and snappy.

In the middle of this, it's difficult to see any way out, the future is bleak. Hopefully though, there is always an end to these difficult times, and life will shuffle itself back to being manageable again.

We do have plans to help us all to recover from this.

The main one is a sharp word with myself, reminding myself that Brian is not doing this on purpose, something is triggering this, and we will find solutions, it may take a little while, but it will happen. When in the midst of constant fighting and meltdowns it's too easy to lose sight of this, and this week I have definitely been guilty of assuming his behaviour is deliberate.

Another is to try to make sure I have some time out for myself. When I am tired, overloaded and anxious, I am not capable of remaining calm and patient at all times. Over the years it's been assumed that I am lazy, as I have always had a need for down time. Being diagnosed as autistic and having the opportunity to read others' experiences of how autism affects them, I have come to realise that I am not lazy, and I will no longer accept this as a criticism. My need for silence and alone time is crucial to my wellbeing, without it I simply cannot cope, I feel anxious and exhausted constantly and my sensory issues, particularly with noise, become more acute. I have ways of managing this which help to get through these difficult days, but on the worst days I forget that there are things I can do, so my plan is to make myself a checklist, and encourage the boys to make their own lists, of things that can help us to feel calmer and less disagreeable.

Another way to help the boys and me to understand and manage energy levels is The Spoon Theory (My laptop has died and I can't insert a link, but if you want to have a look at Spoon Theory, google The Spoon Theory by Christine Miserandino). Knowing you are having a day when you are short of spoons means you can plan the day accordingly, or fit in activities that add spoons to your limited collection, and for this reason, for me, I must add quiet time to my list of necessary activities. On PDA boys' spoony activities are proprioceptive pursuits, things like trampolining, chopping wood and digging all help him to feel calmer and more able to regulate himself, on Brian's list, watching The Big Bang Theory and not having PDA boy anywhere nearby allows him to relax.

There are times when I need to talk to people who understand our lives. People who will not judge, or suggest the same old parenting strategies that may work for neurotypical children but certainly don't work for PDA boy or Brian. There are several online support groups which are fantastic for this kind of thing, on Facebook and certain parenting forums, kind words and advice on tap, as well as friendly reminders that the actions are not intentional.

Rough times happen, but we do get through them, and with hindsight they give us chances to hone our skills at problem spotting and working out fresh tactics to help us get through the next testing times. We also need to remind ourselves that as time passes so do the challenges we face, but hopefully we'll get quicker and more effective at adjusting our lives around PDA.

We're not quite through this patch yet, but having the chance to talk things through with others and working out a plan of action helps us to see a way out of it and a chance to work towards some better times.

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