Arrrgghhhh, and breathe

I always over-think how much I should share in my blog posts. I want to be really honest about everything but at the same time keeping privacy for the boys and from those people who know us personally. When things are tough it makes it hard for me to update my blog as I want to say everything; to get it all down on paper if that makes sense. I hope I get the balance right.

So Little C’s EHCP journey is still ongoing. Pushed forward by a Stage 1 and Stage 2 complaint. The annual review has been done. It needed a lot of work. I had to do it myself - I can see why people pay a professional to do this part. Most of my amendments were accepted and we are just coming out of the 15 day ‘consult with schools’ period. Why are they consulting with schools?? I’ve no idea. I was told that they ‘had to’, part of the process or something. Next it will go to panel. The Panel will decide if he will be offered a place at a school or if we get our EOTAS (education other than at school) request agreed. If EOTAS is refused then we go to tribunal. If EOTAS is agreed they will then look at all the things we have asked for in the package and whether we can have those - we might have to appeal at this point if too much is refused. If it goes in our favour and EOTAS - and the whole package - is agreed then of course this will be bloody amazing. However ….I will still need to implement all of these provisions and try to get Little C to go them, to engage, to support him, it won’t be easy. For the past 2 years he has done very little and only in the last 6 months has he begun to venture out and explore some low level activities and friendships - with lots of issues and difficulties at every turn. So the EOTAS package will be difficult for him I’m sure. But as I’ve put the package together myself, I’m hoping it will be manageable. But I’m still a little worried.

I’m not going to talk too much about Big C, he is my 15 year old. I don’t mention him often and although he doesn’t read my blog I know many of our friends and family do. It’s no secret that we feel he is also neurodiverse. Undiagnosed of course, and never had any major issues in life. Until recently and I hope we’ve not left it too late to get some support in place. He has GCSEs next year and then College. I worry immensely about him and have lots of questions buzzing around my head about what to do and what his future holds. Some mum-guilt too about whether I have missed the signs earlier having been so focussed on Little C and his more obvious needs. 

Lots of feelings of envy right now at the families whose children are able to do all these things with minimum support and have a life outside of school, without the burnout that a day in school or social activity brings. 

Little C turned 9 this week. It’s been a hard week. As many parents of autistic children will tell you, the birthday build-up begins a few days before and then includes a few days after to recover. I think this can actually be said for many typical children, but for ASD children it’s a little more extreme and harder to rein in. Little C was angry and irritable leading up to the day. We feel this was anxiety at the anticipation of what the day would hold. But amongst this anxiety was excitement too. So he was juggling all these feeling and not able to process them so they just come out as challenging, rude and obstructive behaviour. It’s very hard to cope with. Choosing when to let things go and when to say ‘that’s not ok’ - knowing the latter will lead to a meltdown. Then the days after his birthday he’s a little calmer but not able to do much, so lots of refusal behaviour. The week has been draining.

On his birthday we went to Sea Life centre at the Trafford Centre. This is a trip we couldn’t have even considered a year ago so its a huge achievement that this is where he wanted to go. Given that it’s a 30 minute car ride too.
Unfortunately he didn’t like it. That’s an understatement…..he hated it! For anyone who has been you will know that the first part is like a small auditorium where you watch a brief film. Well Little C didn’t want to watch it, he was already too freaked out by the giant moon in the centre of the room - he very bravely told the man he was scared and so we skipped that part. I’ve since heard the film is really cute with a little talking turtle which Little C would have loved but the unknown is a huge factor for Little C’s anxiety. So then they let you through a door at the back - which they lock behind you as the next group will be entering the auditorium. So once you’ve passed through this door ….the only way out is forward. Well we got through the door and Little C wouldn’t budge. He was totally frozen in fear - his legs wouldn’t work. Then came the panic. Then the tears. He needed to get out and the panic was spiralling. Despite trying a few things there was no recovering from this and so I had to carry him (he’s 9, little, but still 9!) to find a member of staff to get us out. It was a maze, very disorienting and a little claustrophobic to be honest. Music and noises that changed at every little themed section. Lots of big bubble tanks where the fish (and sharks) look massive. Finally we found a witch (yes a witch - there was unfortunately a Halloween event on just to make the whole experience even more surreal) and the witch said ‘follow me’ in deep voice (it was a man dressed up as a witch - I kid you not!) and we were taken through a staff door into the back corridors and out to safety! Phew! 

Well Little C was begging to go home at this point. However we got a refund (I hated asking for one but it was £37) and we suggested to Little C that he spend the refund money in Build-A-Bear; and so the day was salvaged! Build-A-Bear were amazing, the wonderful lady made a big fuss of him and he had a great time. We even spent another two hours at the Trafford Centre and played crazy golf and Little C said it was the ‘best birthday ever’ (he says this every year!). 

So that was last week and we are all in a period of recovery. I’m trying to pull myself back together, as life goes on regardless of how exhausted I am. Work, food shopping, cleaning, bills - all the usual stuff. I talk a lot (in person, on here and to the parents I support at work) about the importance of self-care so I’m well aware that I need to practice what I preach. I’ve learnt the hard way that if I’m not coping then it impacts the whole family. Even writing this blog post is therapeutic and really helps me clear my mind a little. So that’s a snippet of what’s been going on and where we’re at. I’m not doing great, but as always I’ll get back on track soon. 

Sending hugs to the parents who relate to this and are going through similar. You’re not on your own and any difficult weeks won’t last long so hang in there.

Thanks, as always, for reading!