The One With The Mood Swings and Meltdowns (and how to survive)

I want to address some of the specific and dominant areas of pathological demand avoidance syndrome as I know how much they become a feature of your life if you’re parenting a child with PDA. A note to any adults with PDA – I’m writing only based on my experience of parenting a child with PDA and would love to hear your experiences. Also, although I’m focusing in on PDA criteria, I’m sure those with other conditions on the spectrum can relate to the following as well as those affected by ADHD. Also, parents of kids without any of these conditions…..you may still be able to relate and/or take something from this.

Future blogs will address other criteria but for now I want to discuss my experience of the following two as they’re inextricably linked. The wording of the definitions is taken from http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

1 Excessive mood swings, often switching suddenly People with PDA may switch from one state to another very quickly (eg from contented to aggressive), driven by the need to be in charge. This may be in response to perceived expectations.

2 Severe behavioural difficulties A large proportion of, but not all, people with PDA can have real problems controlling their temper. As children, this can take the form of prolonged tantrums and violent outbursts, as well as less dramatic avoidance strategies like distraction, giving excuses etc. It is essential to see these outbursts as extreme anxiety or ‘panic attacks’ and to treat them as such, with reassurance, calming strategies and de-escalation techniques. Sometimes a child with PDA can appear very anxious at home but remain relatively passive at school (a learnt coping strategy). In situations like this, parents are likely to feel very isolated and inadequate. In other cases, outbursts are far worse at school, where demands may be much greater, and this can lead to multiple exclusions at an early age. For some children, this anxiety can develop to such an extent that they become school refusers.

“Excessive mood swings, often switching suddenly” Big time. As in, it’s like living with two different people. Which in some ways I can handle and get my head round. As individuals we’re all so incredibly complex and capable of such contradicting and conflicting thoughts and emotions. And we all have varying temperaments. What I find so hard in my son though is firstly, the complete unpredictability of the switch in mood and secondly, the lack of apparent impact on him when he comes out of it. I say, “comes out of it” because it would appear he’s been in a state he has no control over.

If I think about the two states I most commonly find myself in, in relation to my boy, the first I would call “the calm before the storm state” and in my head would maybe have the start of the Jaws theme tune playing in the back ground. The scene is quiet and calm. But I know it won’t last. I know to the untrained eye that all appears well but I’m experienced enough to know that it’s only a matter of time. Being in this state is pretty anxiety provoking…..remember being a teenager and knowing all day things are going to kick off when you get home because your Mum’s found out you slept over at your boyfriend’s and not your best friend like you said? It’s liked a warped, grown-up version of that. And once you’re home it’s walking on egg-shells which is a  phrase I know many PDA/Spectrum parents relate to. What makes me sad about this state is that from time to time, especially the more I have deeper understanding of my son’s conditions and apply them to my parenting, we have an evening with no major meltdowns. A lot of “preventative” work goes into that evening, but still – when it’s over and I’m absorbing the fact that it happened, I feel sad that I hadn’t known earlier that it was going to happen. Sad that I spent all day holding anxiety somewhere within me and sad that I spent all evening anticipating a meltdown.

My counter strategy to this is the simplicity of ‘take each day as it comes.’ A commonly used phrase but one in which, if I don’t just pay lip service to it, can work wonders. Carrying forward yesterday’s experiences if they’ve been shit, is a bad idea. There have been times where we’ve been in a phase where every day really does seem to bring new meltdowns – during those times it can be challenging to ‘start each day a fresh’. I think there’s a subtle link though between me resigning myself to a bad day and unconsciously putting less energy into the strategies that can help.

The second state I find myself in re. extreme moods swings/meltdowns is that of recovery – it sounds so dramatic but I honestly feel traumatised! I carry the trauma with me into the next day when I go to work and go about my day. It feels so surreal because nobody would know, unless I tell them of course, what I’ve been through the night before. My son recovers from his meltdowns disturbingly quickly given the length and intensity of the meltdowns himself. In some ways it makes sense I guess since he’s just released a whole lot of anxiety. Obviously I’m glad that he’s able to move on and “come out of it’….I just can’t catch up as quickly though!

I’ve learnt to “postpone” my own response to later on so that in the moment I can focus on him and simply be with him since he may well now be in a good mood and wish to engage. It also feels important to be around to offer him some calm reassurance as there must be a part of him “recovering” too. If possible I take a moment in a different room. Ideally though I save it for later and process what happened and try to learn from it – nine times out of ten I can see the trigger and something I could’ve done differently. This is sooo important as it empowers me – I find so many aspects of parenting a challenging child disempowering so it feels good at times to feel like I can make a difference.

Overall, re. my own recovery from meltdowns, it’s massively about getting a break whenever I can. Which isn’t as often as I’d like but is so vital. For my son just as much as myself if not more since the longer I go without a break, the more worn down I get and less able to put in the energy it takes to apply all the strategies that can help.

It absolutely has helped me to see meltdowns as panic attacks and respond accordingly. Even just changing the termanology from tantrums to meltdowns has been useful.

My son falls into the category of coping at school (I say coping….I know he struggles internally) then releasing his anxiety at home. Which can be tough for us both but again, simply having this information is empowering as it allows me to anticipate his anxiety levels after school. This is less about thinking “oh no,,,there’s gonna be a meltdown” and more about putting in place strategies to decrease anxiety (essentially removing as many demands as possible) and reminding myself I have the resilience to manage/survive a meltdown should one occur.

Ultimately, unlike my son, I don’t have PDA or Aspergers or ADHD and as such things are 100 times tougher for him than me. Also he’s a child which makes him vulnerable where as I’m an adult, and have autonomy. I think reminding myself how much my child needs me can be daunting and touching in equal measure. Overall, I remind myself it’s such a privilege to think I have the job of making the confusing world of an anxious little boy feel safer and more okay.

The One Where Good Parenting Looks Suspiciously Like Bad Parenting

I am not the parent I imagined I’d be. There are a few reasons for this; 1 I didn’t expect parenting to be so bloody hard 2 I didn’t expect to become a single parent and the biggest reason, 3 I didn’t expect to have a child with difficulties. I think it’s fair to say I’ve felt challenged when it comes to parenting. In fact, the gap between how challenged I feel by parenting and any other challenge I’ve ever experienced is extremely wide.

My wee boy doesn’t respond to more traditional styles of parenting. I’m learning about him all the time and as such, adapt my parenting style. Now lets look at my use of the phrase “parenting style” because the thing is, most of the time I don’t actually feel like I’m parenting at all! Well, not in the way parenting is generally recognised. Lets take my evenings as an example. Firstly though, allow me to share how I would LIKE this part of the day to be: I would LIKE to take my son home, help him with homework, make him a meal, eat with him, possibly take him to a club, bath him, settle him to bed and read him a story. This is not what happens and is totally alien to me although I hear that these things go on in other households. In our household, most of the time between getting home from childcare and going to bed is spent in front of the tv and simultaneously playing his iPad. Food is eaten in front of the TV. Most of it is left. Alternatives are provided. No clubs are attended. A bath is had during an ad break. He takes loads of random shit into the bath with him. He spends 20 minutes wrapped in a towel afterwards because he likes the feel of it. I spend a lot of time in the kitchen doing chores, texting friends and trying to keep sane if there’s been a meltdown. Bedtime can be a stress point and I go to bed with him until he falls asleep. Wtf. That is not parenting right? Surely there’s about 10 parent fails going on every evening? Honestly, were I reading this pre-child I would NOT believe that to be parenting! But before you call social services, let’s break things down a little….

Firstly, how things are in the evenings are an IMPROVEMENT. That’s right. Things have improved since moving away from trying to attain the fantasy evening (with the homework and bedtime story.) Until I let go of trying to parent “properly” we had some pretty dark times. I have flashbacks of numerous lengthy meltdowns and absolutely horrendous bedtimes. There’s was definitely a lot of screaming and shouting (him) and crying in the kitchen (me.) I probably suffer PTSD.

PDA (Pathological Demand Avoidance), Aspergers and ADHD are very complex conditions – the combination of them together complicates things further. They are also all hidden disabilities and present differently in each individual. The best thing I’ve learnt I can do for my boy is to become an expert in him. And that is what I’m doing – combining my learning about these conditions and applying it to him. I know that he is highly anxious but that that’s not always apparent. I know that he “holds” himself throughout his day at school. I know that once he comes home all that anxiety needs to go somewhere. I know that he feels safe enough to release it around me. I know that he must struggle to experience such “big” feelings….he is only small after all. And I know he struggles to even make sense of his anxiety let alone manage it.

I tailor our evenings to be as demand free as possible. I’ve noticed that he needs to “zone out” and engage with something simple that doesn’t demand anything of him i.e. tv and iPad. I’ve noticed that he seems to be “on the edge” and that the slightest thing could, and often does, trigger a meltdown at this time. I’ve noticed that certain stimulus is too much for him – for a while it confused me that the tv and iPad seemed to calm him but that conversation from me was too much…I realise now that the electronic stimulus doesn’t require anything back from him whereas conversation is two way and requires answers and comments – something that is simply too much for him to handle at this time of the day. I keep my voice low and calm, I avoid questions and generally keep dialogue to a minimum unless he wants to chat – each day is different. I’ve learnt that eating together is a terrible idea and that he eats even less this way and becomes too distracted and goes into an ADHD-related hyper state. I’ve learnt that homework and clubs are completely unrealistic at the moment – maybe that will change at some point.

And when it comes to bedtime, well, we’ve come on in leaps and bounds here. A bedtime story used to elicit the same reaction as eating together – he’d become distracted and hyper – not what you want at bedtime! Bedtime dramas escalated until he was up later and later and would go into an intense hyper state – it was awful and I don’t know how I got through it. Eventually, we found a medication that improved things. We still then spent a long phase where he’d watch a dvd in bed until he fell asleep (seriously….it would blow the mind of my pre-child self to know I allow my son to watch dvds in bed…) Now we’ve reached a point where there’s generally a bit of a battle but he will go to bed without watching anything but needs me there until he falls asleep which he tends to do at a reasonable time. So now I actually have a bit of an evening which a year ago just didn’t happen.

So you see although I’m pretty sure that were someone to witness our evenings that I’d appear a shit and negligent Mum, I am actually parenting. And I often have to remind myself of that because it just doesn’t FEEL like parenting. I recently read that to check if you’re a good parent you should simply look at your kids and see how happy they are as a gage – it made sense to me but I realised that if I applied that to myself right now then it means I’m a rubbish Mum because my son really isn’t thriving at the moment – he’s sad and anxious and he struggles. I’m on the case though and am doing what I can to make things better for him and for us. So I hope that making your child’s happiness your goal is as much of an indicator of being a good parent as having a happy child.

I think that’s it – I think I’m lacking the experiences that normally make parents feel good about the job they’re doing – surely I’d feel good were I taking him to swim classes and seeing him thrive? And I feel sad about missing out on some parenting experiences! I feel sad that I’m not reading to him at night or eating with him or helping him with school work. That’s about me though. To him, I’m being the Mum he needs me to be.

The One Where Others Being Worse Off Doesn’t In Any Way Make Me Feel Good

There are things in my life that I find pretty tough. Before I go into them in blogs to follow I need to make a disclaimer; my problems are first world problems and I’m very lucky that my child and myself have full physical health. I really mean that, I’m not just paying lip service to it – to not know the pain or suffering (touch wood) of ill health within myself or my son means I am blessed and very lucky. The reason I need to say that is because appreciating my health and that of my son’s does not make me happy. In fact, I am very very unhappy.

I remember when I was a teen I had terrible dental trouble and needed 4 front teeth removed. It took years to fix aesthetically and for every day I had those awful gaps I used to think “if I just had normal teeth I would not complain about ANYTHING. Like, ever.” And right enough, when the day finally came when I had a procedure that gave me a less-gappy smile I thought to myself afterwards, “always remember how lucky you are to have teeth and to have the freedom to laugh and smile without being looked at!” The feeling lasted a while (and to be honest even now I sometimes think “yay – I have teeth!”) but ultimately, as you can imagine, life happened and sometimes I was happy but sometimes I was unhappy. Reminding myself I had teeth did not cheer me up when I broke-up with a boyfriend or felt hurt or sad or confused.

The endless crap I see on social network sites (you know the ones; “as long as you have food on the table you are rich….be grateful for what you’ve got blah blah blah”) irk me because they fail to take into account our intrinsic actualising tendancies as humans. The “there’s always somebody worse off than me so I shouldn’t complain” way of thinking is flawed because what it doesn’t address is the fact that if the poor worse off person wasn’t so worse off and had the same problem you feel isn’t worthy of complaining about, and this is the important bit, THEY’D STRUGGLE TOO! That’s right; once a person is fed, watered, sheltered and well, they will naturally move up the hierarchy of need (google Maslow’s Hierarchy of Need if you’re interested in reading more about this) and as such, encounter the various struggles that go hand in hand with each stage of life. I feel certain that were I able to wave a magic wand and make my troubles disappear, I would sure be a lot less depressed but I’d still have worries and concerns – it’s part of being human.

Others being worse off doesn’t ever make me feel any better because I don’t want others to be in bad situations. Starving children and poverty sadden and anger me – they don’t make me feel better about my son having aspergers though?! So whilst it’s obviously useful to retain perspective, I try not to invalidate my experiences and compare them in any way to those of others.

The One With My First Post

Welcome to my first post! I plan for each post to be loosely based around a theme so I guess the most fitting theme for my first post is to tell you a little about who I am and why I’m here (not existentially – I don’t have the answers to that but another blog might.)

I’m mother to a little boy who is smart and sweet and beautiful and who has aspergers, adhd and pda (pathological demand avoidance syndrome.) I find managing these conditions VERY CHALLENGING and plan to blog about various aspects of this. I’m a single parent which isn’t a label I wish to define myself by but does feel important to mention because I plan to blog about areas of lone parenting I find tricky. I work part time and I love what I do – I probably won’t be blogging about that but I’m pretty sure I have enough stored up thoughts about the first two aspects of my life to keep me going! Those are the main things to tell you about me for now, however here’s a list of likes and dislikes which may help you decide if I’m the kind of woman who’s blog you want to follow….

Likes; fleetwood mac, fantasy shopping the following sites; Ikea, Clinique, Zara, going to the cinema by myself, cocktails, eating out, wandering around bookshops, receiving handwritten mail, spinning (the class – not just randomly round and round), swimming, the moment in the evening when I realise my son’s fallen asleep, people who make me laugh, people who aren’t twats, first aid kit (the band not a box with plasters etc), lip balm, tea, ironing, being alone, lots of aspects of being a Mum.

Dislikes; not having lip balm, people who say “it was meant to be”, “smile it might never happen” and generally stupid meaningless stuff that lacks depth or sense, people who make ill informed judgements, when you get handed your change and they put coins in your hand on top of a note and the receipt, the moment my son wakes in the morning before I’m ready to get up and immediately starts shouting for me, being cold, my commutes to work, being lonely, lots of aspects of being a Mum.