The PDA Way

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...