Phase 4 – A little all over the place

If you’ve been reading my blog, you’ll know that I’m cathartically documenting the journey of parenting (for want of a better word) my 11yr old son who has a sub-type of autism known as Pathological Demand Avoidance. The latest phase of this journey can only be likened to navigating the various, shifting lands of Enid Blyton’s The Magic Faraway Tree. For those of you unfamiliar with the story; a group of children climb an enchanted tree, meeting some magical characters who live in it along the way; Moon Face, The Saucepan Man, Dame Washalot and the Angry Pixie. At the top of the tree, there’s a ladder leading to a magical land. This land is different on each visit, because each place moves on from the top of the tree to make way for a new land, obviously! Some lands are extremely unpleasant and others are magical, like the Land of Do-as-you-please. Apologies, I digress…..

Image by JanBaby via Pixabay

Finn started on the anti depressant/ant anxiety med, Fluoxetine just over four weeks ago. Word on the street is, it takes 4-6 weeks to properly kick in. Two weeks in and we entered the Land of Agitation, with Finn on the throne as King Skittish. There was no reading him; he could go from enchanting to enraged, flying to flailing in seconds. Thankfully this land ‘did one’ and was replaced with the glorious Land of Half Term, thriving in a ‘no school’ atmosphere with the added bonus of halloween on the horizon. He relishes in halloween – I can only surmise that it’s down to his  penchant for role play, the opportunity to spend time with friends and the freedom that comes with it…..carve whatever you fancy out of a pumpkin, wear what you want and eat chocolate at will. He chose to be the Grim Reaper complete with a one way mirrored mask and armed with a scythe – what could possibly go wrong?

For starters, I made the grave mistake of not managing expectations (when will I learn?) Based on past precedents, Finn was expecting a neighbourhood halloween party or at the very least, for a few friends to be joining him (his sister and a couple of female friends from the street were not cutting the mustard, as lovely as they are). The downside of the mask was that his vision was impaired so he kept falling over, on one occasion indignantly exclaiming “Who puts a tree stump in the middle of a driveway?!” Thankfully it was dark enough to hide my amusement. There were some lovely interludes: he removed his mask when an older lady answered the door and he made a young ‘trick or treater’s’ face light up when he pretended to be terrified of him. This didn’t stop Finn proclaiming it as ‘the worst halloween ever’  but all was not lost; I witnessed him clawing control back from the jaws of a meltdown, which constitutes improvement and given that he was brandishing a scythe, a colossal relief too.

With the start of the second half of the school term, came the Land of Uncertainty, dotted with distressed reactions to anything that involved making a decision but scattered with glimpses of a happier boy. It’s all in the smile and a twinkle in his eye which I’ve missed so much –
One nil to Fluoxetine.
We’re a little stuck in this land, uncertain about Finn’s future; will he ever manage to go back to school, where will he go to Secondary School, will he manage to make peace with himself, will he end up hurting someone really badly one day, mid meltdown?

Amongst all the uncertainty,  are some consistent certainties; my boy is capable, caring and courageous on one side and confused and crestfallen on the other, but we are all muddling through together and doing the best we can, and sometimes, when the going gets a tad tougher, that’s just going to have to be enough.

Passionate and Pathological Demand Avoidance

Definition of passion; – strong and barely controllable emotion

I can’t speak for other PDA’ers but with Finn; passion courses through his veins, reverberating throughout his emotions…..positive or negative, love or hate. I’ve lost track of the times we’ve muttered the words: ‘if we could find a way to channel that….’.

Image compliments of Heron Lake, British Disabled Water-ski and Wakeboard Association

A passion for animals, word play, role play, justice, music, humour, friendships and water. The trick when managing these passions, I’ve discovered slowly (the penny doesn’t always drop very quickly here) is to
a) not label the passion and
b) refrain from direct praise.

As highlighted repeatedly in PDA guidelines (for people like me who rely on clear instructions); labelling who he is, what he likes/dislikes and praising him, ignites those bothersome demands. It’s easier said than done in practice, so I often find myself performing a mildly controlled and embarrassing  ‘whoop whoop’ if he appears pleased with himself – that and labelling the task at hand, like ‘that looks really tricky’ or ‘I couldn’t do that’.

I treasure his passions, cautious that any over zealousness on my part will culminate in his refusal to partake because I’ve riled his spiteful face into cutting off its nose. This may come across as a tad dramatic, but I have plenty of evidence to back up my guilty plea:
Exhibit A: He wanted to play the guitar so I excitedly arranged lessons, bought a guitar in his favourite colour and clearly didn’t hide the fact that, in my head, I already had him up on stage with Ed Sheeran (the autism in him gifts him with the ability to remember lyrics to 100’s of songs) It was a complete shambles – he either couldn’t bring himself to go, or he would go and then run away when we got there. Very occasionally he would have a brilliant lesson and almost every time we left he would point out, very loudly so that his lovely teacher could hear him, that he would rather learn to play the drums.

Exhibit B: Animals – he loves them all and they flock to him so I made the assumption that he might like horse riding lessons. It was a ‘no’ from Finn and it’s generally a ‘no’ anytime we assume he might like to do something (labelling) or if the word ‘lesson’ comes into play.

I won’t bore you with my endless pile of evidence, suffice to say that I was guilty, with diminished responsibility because it was at a time when I was a PDA parent rookie, blindly following the wrong rule book.

About 4 months ago, my sister who has a condition called Hereditary Spastic Paraplegia, suggested we go along to her ‘happy place’; the British Disabled Water-ski and Wakeboard Association. He had a go and he properly loved it!

There are a number of reasons this new passion of his works for him:

1. He gets to wear a wetsuit which nourishes his proprioceptive needs – deep touch pressure helps to release serotonin.
2. He loves water – it has always had a calming effect on him.
3. He doesn’t view his sessions as ‘lessons’.
4. He is in control of his immediate environment, choosing when, where, what and how he moves.
5. There’s no-one in his immediate space – he doesn’t have to process any vocal instructions. Communication is limited to hand signals.
6. He has his own driver and an observer! When I say ‘driver’…this superhero is a British Disabled Water-ski World Champion, tirelessly giving up her time to give back to the sport. Finn’s fussy with who he likes and it’s obvious he adores her.
7 Finn loves banter – it escalates him to a position of parity with adults and he gets away with it at the club. The awesome ops manager at the lake delivers banter in abundance and his passion is palpable.
8. Finn doesn’t have to commit to regular sessions each week, he just does and very rarely, doesn’t, which is fine.

From my point of view, the massive added bonus is that Finn is exposed to people at the club with a plethora of disabilities, actively breaking barriers and overcoming hurdles with unsurpassed bravery at a time in Finn’s life when he is battling, big time, with his diagnosis. The subliminal message that ‘limits only exist if you impose them on yourself’, is unmistakably strong here.

If you’re interested in finding out more, please visit the British Disabled Water-ski and Wakeboard site here: www.bdwwa.org or email them: office@bdwsa.org.

The smile on Finn’s face when he’s on the water is breathtaking and highly addictive and I’m going to do my level best not to muck it up with expectations and assumptions, fingers crossed!

 

 

Phase 3 – Medication, deprecation and abdication

The road that led us to medicating Finn with a low dose antipsychotic (Risperidone), four months ago, was a rugged one.

He climbed out of his Velux window 2 stories up and onto a pitched roof. His ‘flight’ response has always dispatched him upwards; trees, shed roofs, car roofs – it’s ultimately where he feels safe and I have to quell my maternal inclination to berate – much the same as when they walk into a road without looking, because underneath our, not so cool, exterior we’re terrified.

As Finn’s anxiety fuelled, erratic behaviour escalated back in April and May, it got to the point where I had no option but to call 999 on two occasions. He was brandishing knives and smashing windows; – at risk of harming himself and me. It ‘hands up’ has to be one of the most difficult things I’ve ever done – an internal conflict of gigantic proportion, a self deprecating low.

On the flip side, it escalated our case and the relevant agencies (whose deaf ears had failed to capture our previous pleas for help) were duty bound to act. It culminated in both my children being placed on Child Protection Plans. Finn, at physical risk of harm and Tilly (his sister), at risk emotionally. (The impact of PDA on siblings, warrants an entirely separate blog.) Essentially, our medication options were narrowed down to an antipsychotic or an anti-depressant/anti-anxiety drug. As with anything, there were pros and cons to both but it all came down to timing – his behaviour was out of control and we didn’t have the luxury of waiting 4 weeks for an anti-depressant to take effect so, wrongly or rightly, we opted for the faster acting antipsychotic, knowing full well that the down side effect was ‘weight gain’. To counteract the impending weight battle, we kissed our garden good-bye and installed a ridiculously disproportionate trampoline for our small parcel of land. This was a very good decision – right up there with the dog, the coffee machine and Lazy garlic.

The drug did exactly what it said on the tin – I’m in awe, that they’ve developed a tablet which will control that part of the brain and prevent it from ‘flipping’. I was under no illusion that it was a miracle tablet, I simply needed to buy time and de-escalate in the short term. Roll on 4 months and he’d gained over a stone (about 8kg) which had a negative effect on his, already fragile, self esteem. Despite this lousy side effect, I don’t regret putting him on the drug. Indeed, I would have taken them for him if I could – at least that might go some way to explaining my personal ‘expansion’ on the weight front. Aside from the Prosecco, carbs and lack of exercise, I can find no reason for it 😉

The time for change felt right and we decided to give the antidepressant/anti-anxiety drug, Fluoxetine a go with Finn completely on board. The CAMHS doctor asked Finn how he was and he replied; “Terrible. I want to die because of my autism and PDA” ….nuff said!

What really gets my goat (WARNING, RANT ALERT – skip to final paragraph if you’re not in the mood) is that CAMHS don’t recognise PDA as it isn’t listed in any diagnostic manual despite being recognised by the Department for Education and The National Autistic Society (A Government agency and the UK’s major autism charity funded by said Government), as well as ‘demand avoidance’ being listed as a sign and symptom of autism in the NICE (National Institute for Care and Excellence) Pathways guidance.

Even if that’s not enough (and it should be); PDA is a profile of behaviours within the autistic spectrum so how, in today’s modern world of iPhones, 3D printing, artificial intelligence and space travel, can any bona fide clinician working for the NHS Service, not acknowledge a set of evidence based behaviours which undoubtedly affect mental health when their mission is publicly documented, as follows: ‘We’re leading the fight for a future where all young minds are supported and empowered, whatever the challenges. We’re here to make sure they get the best possible mental health support and have the resilience to overcome life’s difficulties.’

Well, my gorgeous boy is faced with a long list of challenges and he is in desperate need of mental health support – not a list of irrelevant strategies disseminating from a manual. If I went to my doctor with a list of symptoms (and no underlying diagnosis) – can you imagine the fallout if they turned me away on the grounds that I didn’t have a recognised diagnosis which would enable them to offer the appropriate treatment?

I have encountered two genuinely supportive CAMHS clinicians who have stood out from the crowd, but in the spirit of ‘telling it like it is’: CAMHS, you’re abdicating your responsibility to countless families, hiding behind policies and procedures and yet, you’re perfectly capable of providing life changing support within those parameters. We urge our children to persevere, think outside the box and be compassionate but the system doesn’t practice what we preach and it filters down, subliminally infecting our future generation.

Thankfully, we’re surrounded by positive influences that counteract the system; individuals that focus on the child and the needs of our family with an innate passion to make a difference, irrespective of recognised diagnoses within a manual. These heroes save us from an isolation that is all too common amongst families managing PDA and I am ridiculously grateful for them. They say that a grateful heart is a magnet for miracles…..hmm.🤔

Phase 2 – Triggers and the power of observation

I reckon I’m a good listener, and I’m good at following instructions (it’s my ‘thing’) but I lack a depth of understanding at times. For example; I’ve been told many times, that it’s crucial to understand my son’s ‘triggers’. You know, those things that set us off, big time! For me, it’s certain noises like someone chewing their food loudly or someone treating me like a child (although occasionally there’s some substance there) and for my son, Finn, I created a list of his triggers (I love lists, like I love research and gin). There’s not much point in identifying triggers if you’re not going to actively manage them on a daily basis. It’s a bit like buying the latest gym gear but maintaining the same sedentary lifestyle.

Image by luctheo via Pixabay

Finn’s list of Triggers:

• Being pressured to do something that has come from another person.
• Being in a situation where he is expected to behave in a certain way, use manners, be polite etc. This extends to birthdays and special occasions.
• Being asked too many questions and expected to answer them.
• Behaving inauthentically.
• Being told no.
• Being made to follow rules that are stupid.
• Lying or being unfair.
• Not having an escape route.
• Changes of plans.
• Questioning their authenticity.
• Disagreeing with him.
• Being too loud (particularly sudden loud noises/celebrations e.g. at football matches)
• Sensory overloads (particularly smell and taste).
• Sarcasm or micky taking.
• Sibling rivalry (a tricky one with a competitive sister).
• Feeling out of control, especially if I’m not there.
• Being praised in authentically, voices that are too enthusiastic.

Finn struggles with his birthday every year and no matter what we do to avoid disappointment, we inevitably fail. ‘What normal child is scared of their birthday?!’ – his words, not mine (I’m on a mission to ban the word ‘normal’).

A birthday is more than one demand, it’s a whopping terabyte of a demand full of lots of giga demands and mega demands: For one, it’s immovable – you can’t change it. Then there are a host of expectations to deal with from the insinuation that you should be ‘Happy’ (a cacophony of ‘happy birthdays’ all day long) to the expectation that you should be grateful for your presents and therefore act in an expected way. We have seen many a present nonchalantly tossed to the side which, before we understood the Demand Avoidance of our ingrate, was a big trigger for us parent dragons. Of course, if you let on that you’re disappointed in him…..well, you guessed it, that’s a trigger for him and the snowball gathers momentum.

I’m writing this on his birthday and it’s been an interesting (for want of a better word) couple of days leading up to it. Despite my efforts to distract him, the pressure surrounding the impending big day mounted and it was palpable. I went from ‘preventing the fire’ to ‘fighting the fire’ to full blown ‘run the heck away from the fire’ and when he eventually erupted, it was traumatic for everyone. His eyes glaze over (as if brimming with tears that can’t escape) and he has a look of helpless terror about him that cuts at my core because we both know there is nothing that will stop it. The adrenalin kicks in and he starts throwing, punching and swearing. This is not my son, it’s not the same boy who cries when he sees an animal in pain or the happy go lucky boy who can light up a room. This is a pure amygdala fuelled PDA meltdown taking him away from us and it’s very hard to remind myself, in that moment, that I’ll get him back.

The speed and agility required to fend off an attack, has equipped me with some unique skills over the years (Anthony Joshua, eat your heart out!).  He usually goes for the knives first which is why we are now the proud owners of a combination locked box, where we keep all sharp objects (and chocolate). His next victim is invariably the clothes horse which is the ideal weapon of mass destruction. It can take out anything or anyone on its trajectory, and it leaves behind an impressive scene of complete chaos. His sister (aged 12) knows the drill by now and escapes the house with Mack (the Springador) to our friend and neighbour, two doors down – she has a key, and I’m immensely grateful that she has a safe place to retreat to until the coast is clear. My friend (afore mentioned neighbour) happens to be with me on this occasion and we both take the flack with the scars to prove it.

Fast forward to the day after his birthday and he’s come out the other side, having passed the period of self loathing that inevitably follows a meltdown. He’s singing out loud, cracking jokes, climbing into bed next to me, asking his sister if she wants to jump on the trampoline with him, feeding the dog and planning his social life. The slate is clean again and I have the opportunity to improve my trigger management skills. I like shortcuts, quick fixes and flying by the seat of my big pants, but if I want to earn that Michelin star in PDA Parenting, some good old fashioned diligence is going to have to be on the menu.

 

 

Phase 1 – Eggshells, rollercoasters and a cow pat

Attempting to parent a PDA’er is akin to fighting fires in a storm; you may get hurt, what works one moment, is fruitless another – winds change, the flames outsmart you, and then Idris Elba turns up to save the day with a bottle of bubbles in hand.

Day one of our new journey was particularly tricky – anxiety driven, ‘object throwing’ meltdowns, refusal to leave the house, pleading for me to end his life and pathologically demanding in a bid to control everything and find some respite from the internal chaos. I felt particularly ill equipped to help, it was a ‘fighting fires’ day.  Thankfully, the embers cooled eventually, the exhaustion set in and he finished the day chilling with a movie and a mate.

I knew I’d have to up my game on Day two; don some serious body armour and dangle a massive carrot (trip to the local Farm park) while camouflaging anything that may appear contrived. He wanted to cycle to the farm park in the rain (Result! Exercise, fresh air and more time outside the house – I love it when our paths align).

The next 5 hours were pure gold dust (aside from a brief, dramatic interlude involving a rushed trip to the vet – another story!). When my darling boy is able to park his challenges for a while, his charismatic, funny, thoughtful and very kind self shines through and I revel in every second of it. I manage some mindfulness and gratefully soak up every ray of it.

Fast forward to the evening when the plan to go to Cubs (which he really enjoys) was threatened by Daddy Dragon’s work commitments, and the unravelling began.  In fairness to Daddy Dragon, we’re fiercely protecting his salary as I’ve had to take a sabbatical from work. He’s a military man with a son who resists demands and challenges authority…..life has a wicked sense of humour!

I had no choice but to muddle through (he simply got on his bike and went to cubs) but as we set off on a cub walk along the river, it was heart wrenching to see the relaxed aura from earlier steadily fade to the point where he was placing a make shift gun to his temple and battling between the fight or flight response as we headed back to base.

I managed a minutia of mindfulness as we walked back along the river in the dark: in the grand scheme of things, it had been an amazing day and we’d had more than our quota of triumphs….at which point, I trod steadfast in a massive, fresh cow pat.

Sharing is caring

I’m a blogging virgin, who has arrived at this point because I have  found more solace and invaluable advice from bloggers like Steph’s two girls, LovePDA, The Learning Curve and PDA Parenting than most professionals I’ve encountered (apart from a handful – you know who you are if you’re reading this!).

As no two PDA’ers are the same; I’m hopeful that I can add something slightly different without diluting the wonderful contribution of others and, if nothing else, raise some much needed awareness about PDA along the way.

I’m wife to a self confessed control freak and mum to two dragons: my 12yr old daughter  (Neurotypical #justsaying) and my 10yr old son, diagnosed ASD with a generous dose of pathological demand avoidance thrown in. Oh, and our beautiful Springador who is a great distraction from the daily grind.

My story, thus far, reads very much like so many PDA journeys I’ve researched to death over the last 12 months (I’m very good at research…..it tricks my brain into thinking I’m doing something worthwhile). I’ve ticked all the boxes from the ‘bad parenting’ box (we ticked that twice actually – just for good measure) to the ‘changing schools’ box and the ‘we can’t help your son because we don’t recognise PDA’ box. Finally, after chasing our tails for three years, and repeatedly ending up in the same spot at the expense of my son and the family, I’m stopping the bus and resolutely disembarking (I’m leaving the baggage on the bus too – the guilt, the frustration and blind faith are of no use to me where I’m heading).

My son, started refusing school, on and off, around March this year despite all their support and his amazing Learning Support Assistant (LSA) properly carrying the PDA mantle. His anxiety levels increased as the year progressed and his behaviour escalated (meltdowns of violence and self harm). Over the summer break, we went to France for a couple of weeks with friends and we experienced more moments of joy with him in those two weeks than we’ve had in the last year. With the start of the new school year (Y6), he went rapidly downhill again. We told him there was no pressure to go in, but we foolishly didn’t account for that annoying achilles heel of an ‘internal demand’ and the fact that he wants to go in, of course! So, with the view to safeguarding his mental health (he asks to die everyday) and facing the cold, hard truth that none of our collective initiatives have done anything to minimise his pain, our GP has signed him off school on medical grounds until the end of October.

I’ve only just told him…as you can imagine; the timing and the wording was critical. The gist of it involved a) apportioning blame to the doctor (we’re not saying you can’t go to school), b) reassuring him that his valued friendships could be maintained with regular playdates and c) it’s not forever. His reaction was unnervingly vanilla, but it’s early days and only time will tell…which brings me, (eventually!) to the main reason I’m heading off on this blogging journey: To capture and monitor daily life as we take off on this new trajectory, to selfishly offload some of the tougher times and celebrate the wins. With any luck, I can offer some help along the way too.

Writing my first blog has been unexpectedly therapeutic (a healthy alternative to self medicating with gin!). As a parent of a PDA’er, I’ve developed a tough skin and welcome honest feedback…….as with everything else, it’s a ‘work in progress’.