Tuesday 10 May 2016

Little things can lead to breakdowns

She wouldn't get in the car.

She wouldn't get in the car, to go to the appointment with the nurse that I had made earlier that day.

That was all it took. All it took, for me to have a complete breakdown. In Sasha's own small, scared and tired words: 'I've never seen an adult cry that much before, mummy. I've never seen anyone cry that much.'

Nobody had died. I felt awful for not managing to hold the tears back until I wasn't in the same room as her. I just couldn't though. I don't really know where they came from; somewhere deep down, within. I couldn't stop them.

I don't recall ever crying that much, or in that way. I'm not generally prone to crying at all and can probably count on one hand the times I have (apart from the teenage years possibly, when everything seems much worse). When our beloved cat was run over at the start of this year I did cry. I cried lots, for a whole day, on and off, until my eyes were sore. That was different though. This time was chest-heaving, primitive in some sort of way.

It obviously wasn't just the car incident that prompted this. There's always a bigger story, isn't there? Little things build up to big things, and can ultimately lead to breakdowns. There doesn't always have to be one big obvious event which justifies the pain.

I'd called our surgery to ask for a doctor's appointment because our youngest girl was poorly. She'd started with a cough and cold on a Wednesday and had got progressively worse over the bank holiday weekend. By the following Wednesday the cough was more persistent, her temperature had been extremely high on and off and she had stopped eating food (although was luckily still drinking). Four days of not eating, and I was getting kind of scared to be honest. It's no exaggeration to say I could see the weight had dropped off her and her bones were prominent. So by the Thursday I was desperate to have her checked over, to make sure she didn't need antibiotics.

The last time she had been this poorly was four years ago, and that had ended up with the doctor diagnosing pneumonia and her having to go to A&E (read about that here) and have a drip put in to administer the drugs. Sasha doesn't do medicine, at all. I've talked about this before on my blog, in my post Poorly girl won't take medicine. We've been through a whole spectrum (excuse the pun) of ideas of how to get her to take medicine, but with no luck. She has a very limited diet and drinks only water, so there's no way of hiding the taste or smell from her. Now she's older, I think she would like to swallow a tablet, but can't bring herself to do it - she got as far as licking one, but that didn't help of course. It would almost be funny if it wasn't so serious.

Image is of Sasha four years ago, when she ended up in hospital because of pnemonia. It took five nurses to hold her down back then to get the cannula inserted.
So it came to the time for her appointment with the nurse, but we needed to go via school to pick up her older sister slightly early to make it there in time. I left plenty of time so she wasn't rushed, and I got her dressed upstairs as she got out of bed. By the the time we made it downstairs, she sat on the stairs and refused to move, saying she felt dizzy and she couldn't get in the car. I tried to help her up but she got very distressed and eventually crawled to the sofa where she could lie down after removing her clothes.

At nearly nine years old, she is quite tall, and despite having lost some weight, she is too heavy for me to carry properly even if she is willing. So there was no way I could get her in the car. I had to frantically try and call friends to find someone who could collect our eldest from school (as school weren't answering, she had no idea what was going on) and I was also trying to call the surgery to let them know that we wouldn't be making it in time for the appointment, but that I still needed her checking out. At this point our youngest was saying she would rather be taken in an ambulance to hospital - and that's despite her remembering what happened there the last time. So I figured she was extremely poorly.

The receptionists at the surgery were the straw that broke the camel's back. They discussed between themselves what they should say to me whilst forgetting to mute the phone - 'what is she expecting?' was just one of the comments I wasn't meant to hear. No understanding, at all. Even though they should have heard in my wobbly voice that I was feeling helpless and at breaking point, they weren't at all sympathetic, or helpful.

I eventually got a call back from the nurse, and a suggestion in a not particularly friendly tone that I should make it in to the surgery whenever possible, as long as it was before 6pm. Amazingly, I did manage to persuade Sasha into the car once her sister was home, but I honestly think that was only because she was so shocked at seeing me so upset. She was checked over and it appeared it was 'just' a particularly bad cough virus with very high temperatures, so I was relieved to not have to go to hospital but still concerned for her. Sasha is still recovering now; this was no run-of-the-mill cough and cold.

I'm not writing this for sympathy. Maybe in part to get it off my chest, yes, I'll own up to that. But also to highlight that every day is stressful when you have a child with this type of autism, PDA (Pathological Demand Avoidance). It doesn't help to label us as neurotic, over-protective mums. I still believe I'm extra lucky that I have an older girl who can be parented with standard methods, so I can see the difference myself. I'm acutely aware though that there are so many others out there who are being judged, unfairly, every day. Please, don't judge, do listen to parents/carers, and read between the lines. Many of them may be at that tipping point.

I will continue to write my blog to try and educate others about the daily challenges of living like this. I will also be popping into our old surgery with some much needed information for all the staff there.

For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.