The PDA Way

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...