This is our PDA story (week 2)

Welcome to week 2 of 'This is our PDA story', where I hand my blog over to another person living with PDA in their life.

There is plenty of information about PDA (Pathological Demand Avoidance) on The PDA Society website at www.pdasociety.org.uk which could help parents, teachers and other practitioners understand this condition. More importantly the website offers different strategies to use to help children and adults who have PDA.

I was so pleased that so many of you took the time to offer support in your comments last week. Sadly we know that not everyone is quite so understanding, so it really helps to hear from those who are. Thank you all.

So here are the words of another Mum, telling her story of PDA. I know she would really appreciate it too if you were able to take the time to leave her a comment on this post; as we found out last week, the support, even if only virtual, really does help.

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Here is what PDA looks like in our house:

Sometimes someone will suggest we get involved with this or that, or ask in surprise why we don't have time to help with some class or event that they feel is a good cause or a good opportunity. I wonder whether to slap them, shake them, or resort to manic laughter, though I haven't actually done any of those things yet, because I always remind myself that they just really Haven't. got. a. clue.

Why wouldn't we have the time? (And the idea that stay-at-home parents have all kinds of spare time is a whole another issue!) We home-educate. My husband doesn't have to commute to work. We only do one or two extra-curriculum activities at a time for the children. Sometimes I'm sure people picture us looking like a family from a magazine, me perusing Pinterest for our next family craft, the children looking up from their quiet work sheets to smile at the baby while he lies cooing gently in his cradle... It's not like that.

Before I had children I spent some time working as 1:1 support. I usually only did 6 hour days, and rarely did more than 8 hours, because it was so physically, mentally, and emotionally draining to give constant focussed attention to someone who needed considerable support to get through a normal day. Now I do that job all day, every day, and am on call through every night. The main difference is that I don't get paid for it. And I don't get sick days or holidays. And I am also a wife and mother and have other children and a household to run.

But how do I explain to people who see us casually now and again that our exceptionally bright, physically capable, school-aged child needs help through every step of the day? I don't like to tell other people about her struggle, because that's her life and her story. So we don't explain. We let people judge us. I know the things they say, because often they don't bother being too discreet. Sometimes it hurts, but I'm pretty sure that, as an adult, I can handle the remarks and the snubs better than my child would if it was her they were discussing and not her parents. Once or twice I've tried a quiet explanation of "it's ok, it's a form of ASD", but I've already heard several versions of the "but my son/nephew/neighbour's child is autistic and he/she/they don't do that - it's obviously down to parenting" conversations.

My child doesn't fit neatly into more well-known boxes. She doesn't look autistic. From the outside, what she looks like is incredibly spoiled and defiant and deliberately uncooperative. (She's not. She's fantastic.) She looks like people's common fears about home-educated children: shocking behaviour, no social skills, and can't even read. Unless you live this life, I don't think you can understand how isolating, how exhausting, how just plain hard it is to have a child who looks normal and isn't, or how hard it must be to be that child.

It is also really is just plain hard to try to get across to others what our reality is like. Other parents use words like "meltdown", or talk about their house being "trashed" or "wrecked" by their children, and it gets difficult to try and describe something different with the same words, and to step up the language to fit the difference would mean using a vocabulary I would rather not use when discussing a child. Chances are, though, that when, for example, a parent of a more typically-developing child uses the word "meltdown", they probably mean their child cried and maybe flopped and yelled a bit. They are probably not picturing their child screaming so loud and so long that she leaves puddles of saliva on the floor and develops croup from the irritation to her own throat, or biting so hard that she draws blood, or throwing anything that comes to hand at anyone within range for an hour or more. And when they say their house has been wrecked, they probably actually mean they have too many toys and a bunch of them got dumped on the floor. They probably don't mean that everything that can be smashed, chewed, ripped, or thrown has been. Likewise, when they say it "takes forever" to get out of the house, they probably don't mean that they cancel their already minimal social outings on a regular basis because the distress that it would cause is simply not worth it, and they know anyway that only one parent at a time can enjoy any outing because it takes at least one parent's full attention to manage their child's behaviour. (And there are two of us - think of the single parents who live this life!) They probably can't actually imagine how it can take two hours and more to dress one child, or imagine that said child might then go and bury her clothes in the garden in the time it takes to get the second child dressed for the outing. When they say preparing for the holiday season is "a nightmare", they probably don't actually mean they wake up in a cold sweat from anxiety-inspired Christmas dreams starting in August.

For her part, my child is wonderful. She is so sweet and straight-forward, she tries so hard to behave properly. She has this romantic imagination, filled with mermaids and magic, alongside a love of logic and facts. David Attenborough is her hero, and she's been quoting famous poems since before she was two. She is petite and dainty and graceful, and dances ballet all over the house. She is just so full of life. She also has some fundamental cognitive skills that are missing or delayed and that are just so hard to pin down. Theory of mind, ability to read emotion in others and regulate her own, the ability to adapt what is in her head with what is outside it, connecting one event to another in a meaningful cause-and-effect flow, the skill of adjusting one's actions when an expected outcome changes - these are skills that most people develop so smoothly that they seem to be innate, yet for her they are challenging skill-sets that must be learned through trial, error, and long, hard practice.

Whether it's the difficulty of adapting to a fast-paced and unpredictable world (bearing in mind the difficulties with sensory processing and theory of mind), or related to the general intensity of emotion and difficulty with toning them down, or both, there is also the anxiety underlying her unusual behaviour. Fear can bring out challenging behaviour in any child. My child lives with a lot of fear. The main result of that fear is the demand avoidance that is the crux of PDA. She describes it like this: "When someone tells me to do something, I just feel like I lose all my energy. Then if they say I don't have to do it after all, then my energy comes back." A wise friend of ours identified this as a stress-response. It's a shut-down in response to the anxiety resulting from someone, even herself, placing an expectation on her. The result looks like defiance, but it's not; it's fear.

So, we are a PDA family. It's not something we deal with on the side; it is our life, and PDA affects every aspect of our lives. We are a family, and what we do as a family has to work for everyone. It's hard work, but it works. It also takes a lot of time, energy, creativity, research, and humour. I've been tired for years. I don't have time for browsing on Pinterest. I don't have room in my life for much outside of my job as a mother. My life doesn't look like yours. But it works. I used to be into extreme sports, now I do extreme parenting. But our family is a happy one, and our children are growing beautifully, and one day they will grow up and fledge into independence, in one degree or another. They say the proof is in the pudding, and so far, this pudding looks awesome.

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To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?