One day at a time

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 long. He has red and purples marks up both arms where he sucks his skin. His stammer is the worse it’s been. His tics are relentless. The gulping tic is causing hiccups which distress him hugely (and means he sucks his arms to try to stop the gulping). He refused food for a whole day last week as was afraid of bugs (as he overheard me telling Big C that his room needed cleaning as he eats in there and that leaving crumbs would attract bugs). He still sleeps in my bed, is not in school and uses nappies. The things he can do are so difficult for him. Just brushing his teeth each night takes an unbelievable amount of resolve. 

He often thinks he will die or that someone will die. He asks ‘will I die?’ ‘are you going to die?’ at the slightest thing. A broken nail. A cough. Hiccups. 

He has huge anger outbursts and heartbreaking meltdowns. He struggles to understand and rationalise things. He has a lack of understanding when it comes to other peoples thoughts, needs and feelings. He complains that his head is whizzy and that there are too many things that his head is telling him to do - or not do (compulsions we think?)  

So for me, I have needed some time off work. It’s no wonder really is it? Someone can only hit a wall so many times and get back up again, until at some point …it’s not possible to get back up. That’s what happened. I need to consider now whether I can even continue to work or whether it’s time to accept that it’s just not possible to keep this up. My emotional energy is depleted and of course my main priority is my family.

So what the plan? 

I’m trying to focus more on self care. Little C is highly attuned to when I’m not ‘okay’, and this obviously impacts him too. Putting on a brave face all the time is hard. I don’t want him to feel my frustration and anxiety. I’m his safe person, I should be okay and in control. But I can’t hide it all the time and Ive lost my temper and said things I shouldn’t have. So it’s medication, counselling and yoga for me. Im lucky to have an amazing and supportive GP who is helping me to get my mental well-being back on track and looking at ways to support us. 

CAMHS have agreed to assess Little C for ongoing treatment and support (which is different to the consultant appointments and CBT that I’ve mentioned previously - the CBT wasn’t suitable  due to Little C’s lack of understanding his feelings). The threshold to access CAMHS is very high due to the demand of the service. So we are again on a waiting list of another overwhelmed service and hoping they will take Little C on and help us. We are awaiting another appointment with the CAMHS consultant and we are going to agree to a trial of medication.

Work - not sure. Still too soon to make a decision. Maybe I need to do a job with less pressure, deadlines, timescales. In a different environment. I miss being around people though. My job gives me confidence. I don’t want to lose that. I need to think hard about this one. 

School - who knows? There is possibly a place for him at a school in September 2023 but I can’t think that far ahead. 

So just taking one day at a time. One foot in front of the other. Trying hard not to think too far ahead. Christmas will be very low-key and quiet for us but thats okay, we kind of like it that way. 

Wishing everyone a healthy and happy Christmas and New Year.