The PDA Way

I’ve put off updating my blog for ages again because I didn’t ever want it to be all doom and gloom. I wanted my blog to be helpful, insightful and a glimpse into a different way of family life. But truthfully, right now ….it’s hard finding any positive or uplifting things to share.  Little C is unable to do most things he once used to. We are struggling to make sense of this. The demands and expectations made of him are low, so why is he finding even the slightest thing impossible to do? Im doing another online course next week and hoping this will shed some light on where we are going wrong with our low demand parenting strategy. I’ve got a feeling that the demands which are now becoming absolutely necessary have become too big and the more desperate I am for him to do them (no matter how much I hide this) the more he  can’t  do them.  He is now approaching the six month mark of no bath/shower or hair wash. He can no longer cope with nails cut so they are horribly ...

I haven’t updated in a while. Things have been really difficult (still are). So much happening - appointments, assessments, reports, meetings (schools, CAHMs, hospital). We’ve been waiting so long for some these things; I just wish everything wasn’t all happening at once.  Little C is struggling. Today we should have gone to Forest school - 2 hours of outdoorsy fun at his current school. We were ready to go but then he said he couldn’t do it. What followed was heartbreaking. Little C became hysterical crying saying ‘I want to go but I can’t do it’, ‘just force me to go’. Me trying to pick him up to carry him and him lashing out violently in sheer panic. Then followed extreme crying (screaming, clawing his face, almost vomiting) and saying ‘my life is too hard I just can’t do anything’, ‘please still love me’. This went on for well over an hour. I’d told him it was okay, we wouldn’t go. But the problem was that he wanted to ….but couldn’t.  He talks of his brain telling him ‘no...

Last week, after a long time on the diagnostic pathway, Little C finally received a formal diagnosis of Autism. ADHD was mentioned but we’re not clear if he has this diagnosis yet. The appointments were quite gruelling for all of us. Once we get the report I think we’ll have a better idea of what the actual diagnosis(s) is/are. Medication has been recommended. Two different drugs.  I’ve wondered whether to share this or whether there are some things that should be kept to ourselves. The subject of medicating a 6 year old is really quite personal and controversial. But as this issue is causing me a lot of turmoil, and I’ve already shared a lot anyway, I’ve decided to include it in my blog. I also hope, as always, that it may help other families in the same situation. The consultant foresees Little C needing ADHD medication. There are issues as to which one as Little C is so small and underweight and ADHD meds can suppress appetite. Little C also has tics which are currently quite se...

So we did it. We made it to Wales …and back! The weather was gorgeous and we had the best time.  The car journey was a bit stressful and Little C refused to have the transdermal anti sickness patch stuck on him. He did agree to have a Kids Quells though. We set off at 8pm (motorway closure at 9pm meant a change of the original plan) and he was wide awake and very anxious but very determined. I was proud of how brave he was as I could see the panic so clearly in his face. I was glad when 30 minutes into the journey he fell asleep (part sleep, part Quells sedation I think judging by his inability to hold his head up!). He was still fast asleep when we arrived at the caravan and I carried him to bed. He woke up giddy and bouncing with excitement the next morning. He had a great day playing with a friend at the park on the caravan site but by tea time we could tell he was starting to worry about the wedding the following day. He was asking a lot of questions about what would happen. We...

  So this week is a pretty big week and if we manage it, it’ll be a huge achievement for Little C. We’re going on a trip. A few days in Wales at Little C’s grandma and grandads caravan and in between we’re going to our friends’ wedding which will involve us staying in a hotel for one night as it’s a 30 minute drive from the caravan. Yes!.. gulp… a car journey, not just the one either but lots of car journeys! This is the first obstacle of the trip - and possibly the biggest.  We are all acting very chilled out about the whole thing to try not to build it up so as to keep Little C’s anxiety low - but the reality is that we are so nervous at how this is going to go, and if we’ll even get there at all. The plan is on Wednesday to travel in the dead of night. Well, not exactly in the dead of night …we plan to set off around midnight but to Little C it’ll be the dead of night! We’re hoping that Little C will sleep for the journey and that the roads will be quieter than during ...

Big C and myself went to Spain for three nights for a little break; mainly as Big C deserves to not be stuck at home all the time. It was amazing and we had such a great time. We came home last week and I tested positive for covid the day we got home. So it’s been 4 days and I’m feeling loads better, but I’ve fallen into a horrible depression. I’ve shut myself away in Little C’s bedroom for the last few days (he won’t come near me anyway as he’s scared of germs - especially covid germs).  As much as I loved our two days in Spain I felt such awful envy at all the families there, enjoying their time together. Seeing little kids on the beach, making new friends and splashing in the sea. I just wanted Little C and his dad to be there with us. I felt guilty that we had come away without them. But even the airport made me realise that my dream of us all going abroad next year could never happen. Unless we had a private jet and flew from the field at the back of our house.  Comi...

This week has been up and down.  First the good stuff. I had a call on Tuesday from the SEN team at the Local Authority to tell me the refusal to assess Little C for an EHCP had been overturned and he will now be assessed! (yey!) So we won’t have to appeal and go to tribunal (for the moment anyway). However …..they might assess him and then decide not to issue him with an EHCP. In which case we’d be back at appeal and tribunal stage again. So, this weeks news is a huge step in the right direction but still a long way to go. Other good stuff - the weather! I just love the sun. Loads of nice walks and Little C playing in the back garden and in the paddling pool.    So nice to get him out of the house.  Then the rubbish stuff. Little C has struggled in the heat and things have felt more difficult. He’s been angrier and more irritable than usual. Stammering and ticcing such a lot too. Bedtimes have been particularly difficult and I’ve felt some of the hopelessness that I...

I’d always planned on doing a post about Little C’s tics, however he’s had a good run of a few months of not really having any. But now they’re back!  We first noticed a tic when he was around three and he started doing a weird twisting stretching thing with his arms. After a month or two it disappeared. Since then there have been a whole range of different tics including sniffing (but outwards), twisting his head, scrunching his nose. Most don’t seem to bother him but the twisting his head one did and one night h e said ‘Why can’t stop I doing it?’ That was upsetting but luckily that particular tic didn’t last long. The tics at the moment are throat clearing (he’s had this one for a few years now). This morning he’s been doing it about every 5-10 seconds. His new one is with his eyes - it’s so not much an eye roll but opening his eyes really wide and looking to each side (every 2 minutes or so). This eye one started a few weeks ago and is still going strong. Right now he’s repeati...

This is a short impromptu post as I’m tired, angry, emotional …and then some more tired. But I still needed to put something on here, if only to clear my head a bit. So Little C’s EHC (Education, Health and Care ) assessment request was heard at ‘the panel’ today and I’ve just had an email saying they  won’t  be assessing him.  It took such a long time to even get to this point. The amount of evidence we had provided plus the reports that the SEN team had obtained themselves were all in favour of Little C needing a highly specialised and bespoke education. All the professionals who attended at Mondays Early Help meeting were really optimistic that he would be accepted for it and we even talked about what kind of setting or provision might be best for him in the future.  So to say we’re disappointed is an understatement. I’m so utterly exhausted today. More so than usual. At the moment I actually can’t bare the thought of fighting this. It’s so hard having to keep fin...

  Today is PDA Day! An annual event held by the PDA Society to raise awareness and funds, and to increase acceptance and knowledge of PDA. One year I will definitely get involved and do something fun!  A sponsored sky dive maybe (or maybe not!) Suggestions welcome though.  ⬇️ https://www.pdasociety.org.uk/pda-day-2022/ ⬆️ This charity is amazing and I’m so grateful to them as they gave us answers when we desperately needed them. I spent so many hours on this website when I first discovered PDA. It’s pretty much the manual for all things PDA related.  Little C’s favourite teddy is ‘Panda’ and has been since he was a baby. I always think that’s weirdly apt given that the PDA mascot is a panda!  I just wanted to take this opportunity - on PDA Day -    to say ‘thank you’ to everyone who has read my blog, forwarded/shared and ‘liked’ my blog, left messages and DM’d me. I appreciate it so much. I’m enjoying putting it all into words and I honestly I did...

In  a previous post I mentioned Little C’s ‘beatboxing’ and said it needed a post of its own to explain it. So here it is. The gist of it is that he walks (well more marches/stomps) round the room making noises with his voice whilst kind of body-popping along with it (confused? …don’t worry I’m going to show you a video) So it isn’t actually beatboxing but he often holds a felt pen as a microphone - and because of the noises he makes which aren’t actually words or anything, we call it beatboxing. He has been doing this for years but around the time he began playing a game called Friday Night Funkin’ it seemed to take on a more of meaningful purpose (i.e. the ‘microphone’).  We’ve established that Little C likes doing this. It makes him happy. He often feels the need to do it. We wonder if it burns off built up energy maybe? He once said he felt angry because he couldn’t do it in school. He sometimes says he needs time to do it before getting ready for bed. Little C can do this...

I found myself this evening sat on the grass in my mum and dads back garden, as I had called round and nobody was home. It was so quiet - just the birds singing (cliche I know - but true!). It’s not often I get time like this to myself so I savoured the moment (just missing a nice pink gin!) and was thinking of all the things that Little C has overcome this past week.   It’s been a really good week! Last weekend Little C managed both a short car journey  and  a hair cut. We even managed a treat afterwards in a little cafe opposite the barbers. This is HUGE and these moments are so special. Moments and events that most people probably wouldn’t think twice about.  The outing didn’t go without a few hiccups though and we very nearly had to walk home. But with a lot of patience and encouragement he was able to get back in Auntie S’s car for the drive home (and didn’t throw up - bonus!) Then in the week he went into school.. twice! Just an hour each time, only in the play...

Some days are harder than others. Today has been hard - and it’s only 11.00am! It’s one of those days where you look round and see all the flaws in your house (the ones that nobody else can see) and everywhere just look untidy and needs a good clean (including Little C). But Little C wants me to play and I’m SO not in the mood today.   It’s weird how my mood seems to drag everyone else’s mood down too. Even my bonsai tree looks brown and drab today. I hate how I’m always expected to be happy and smiling and eager to play (and serve food and change dirty nappies - all with a smile). If I’m quiet or my voice isn’t as chirpy, Little C will constantly ask ‘what’s wrong with your face?’ Can you imagine being asked that every 5 minutes when you’re in a crap mood?! I want to reply to him ‘THIS IS JUST MY FACE!’  I know he doesn’t mean it, he’s trying to understand why I’m not my usual self (he actually thinks it’s because I lost at Shapes and Beats earlier - if only it was that simpl...

I recently played on the Xbox with Little C. It’s something I’ve purposely avoided and left to Little C’s dad and Big C. Technology and gaming isn’t really my thing. But earlier this week I was tired and I’d just made a brew so I gave in for the simple fact that I could play from the comfort of the settee!   Little C is very difficult to play with, both in person as well as when gaming. He dominates the games, changes the rules to suit himself, struggles with taking turns, is impatient, angry and gets bored very quickly. We’ve tried to teach him some of these skills but it’s very hard to get him to think any differently. He sees himself as being the leader and that rules just don’t apply to him. He is incredibly fixed in this way of thinking. We played Minecraft first and he had me throw the contents of my ‘chest’ to him. I didn’t realise at the time that he was basically taking everything in my chest and putting it in his! Then we played a game called Rush and although he designed...

I thought I’d explain the title of my blog a bit more,  ‘The PDA Way’. PDA stands for Pathological Demand Avoidance. The PDA Society are a charity and have a fantastic website which they are happy for me to post a link to   www.pdasociety.org.uk   As anyone with a PDA child already knows, conventional parenting doesn’t work. So rewards, consequences, praise …all the usual things you’d do as a parent cause anxiety, anger, meltdowns, violence. We tried for so long in the belief that we needed to be firmer, clearer boundaries, more consistent. Super Nanny’s voice rang in my head ‘he’s ruling the roost’ (I look back now and wonder how many of those kids on Super Nanny had undiagnosed PDA!). Everything was  a constant battle and we were all pretty miserable. I questioned myself and my parenting. I felt like a failure. Enter CAMHs, The Early Attachment Team to be exact. We were allocated a Clinical Psychologist, we’ll call her S.  S is the main person in our journey w...