Every second counts (literally!)

Things are still going pretty good for the moment. Little C is still having the odd bath. He had another hair cut last week and nails cut last week too. We also had a lovely - but not relaxing - four days at the caravan in Llandullas. 

Myself and Little C’s dad are pretty much tag-teaming in looking after him as he is so full-on and demanding. We don’t get much time with each other, maybe 20 minutes sat in the garden a few times a week, and at the caravan it was the same. 

We’ve been trying to prepare Little C for the new school in September but until recently he wouldn’t even hear the word ‘school’ without shouting, covering his ears or running out of the room. But now he’s thinking he might like to have a look at one. He’ll probably change his mind but the fact he’s willing to even think about it is good. We’ve told him though that there is no pressure and he won’t be forced into going (like he was in the past 🙁). I’m still not sure if this is going to happen. Little C attending school honestly still seems like an impossibility.

One thing that I’m really struggling with, is Little C’s need for everything to be done to an exact time frame. Which is actually weird given that he himself needs lots of flexibility and can’t adhere to strict times. I’ve tried to explain that life doesn’t always run to exact timescales or sometimes exact time scales aren’t needed. But he can’t cope with this and can’t understand this explanation. My sister and her family were coming round last weekend and he wanted to know what time. I said ‘whenever they’re ready, it’s an open invite’. He didn’t like this at all and was angry and on edge for hours asking the same questions over and over again. But on top of this he wanted to know how long they were staying. He pushed and pushed and was relentless in his need for a definite answers. So I just said ‘maybe until 10pm’. He didn’t like the ‘maybe’. Then he said ‘will they be here for 3 hours then?’ He likes things to be for at least 3 hours - like Nana coming round or Grandma and Grandad looking after him. Anyway, a lovely evening was had and Curtis was a star - until they left. Then it was two hours of hell before he fell asleep. 

So this ‘time thing’ might sound just a tad annoying … but …its for absolutely EVERYTHING - food cooking, me having a shower or going to bathroom, me getting dressed, expecting a phone call, doing housework, eating food, and it’s so exhausting.

Little C - ‘where are you going?’

Me - ‘I’m nipping to the bathroom’

Little C - ‘how long will you be?’

Me - ‘erm I don’t know maybe 5 mins’ 

Little C - ‘so it’s 10.05 now so you’ll be done by 10.10?’ 

Me - ‘erm I guess so’

5 minutes later 

Little C - ‘muuuuuuum it’s 10.10 and you’re not back!’ 

Face palm! Can you imagine this type of thing all day every day?! You might wonder why I didn’t say I’d be 15 mins? If I said that he’d get angry and say it’s too long and he doesn’t want to be alone for so long. There’s no right answer.

It’s usually the small things that are the hardest as they’re the things that grate on me all day. It often feels like he is ‘pushing my buttons’ to make me angry or to provoke a reaction. He 100% isn’t though and if he senses that I’m getting angry (because I do snap, quite often), he’ll either have a full on screaming meltdown or will get upset and say ‘I’m so sorry mum, I don’t know why I do this. I hate myself’. Really sad isn’t it? I feel so bad when I lose my temper but sometimes it’s impossible not to.

The small steps Little C has taken recently are more than enough though and are making a huge difference to his well-being and the whole family’s wellbeing too. He has shown some lovely kind gestures over the last few months, just small things like when myself and Little C’s dad were sitting in the garden and he - without being asked - brought both our sunglasses out to us. If he hears any of us sneezing he grabs a tissue and runs to us. Recently I’ve had a bad back and one night in bed he said ‘it’s ok mum I’m here with you’ - obviously repeating what I’ve said to him in the past but still a lovely and appropriate thing to say. He is so sensitive and has such a kind heart and he’s learning how to communicate this now. 

Finally, if you’re still reading, I have some good news. I have a new job! 

I will be working for a large disability charity in a team supporting parents and carers who have young children with additional needs. My role within the team is someone with lived experience so as you can imagine this is perfect for me to share my knowledge to support other families following a similar path. I’m so excited to be a part of this project and doing a job that fits so perfectly into my life. 

Onwards and upwards x