It says a lot about the state of my life that last week’s crisis isn’t even old news before the next issue is rolling in. The battle with Simon over child maintenance was instantly relegated to the sidelines when Lily was suddenly expelled from college, so much so that I had to remind myself to post off my statement and evidence in time to the CMS, caught up as I was in the new business of trying to find another college placement for Lily and fighting for the SEN support she so obviously needs. Meanwhile life continues, there’s no intermission doled out to hand you the space and time you need to handle whatever’s happening. So inbetween calls to local advisory services and colleges, I received an unexpected call from the London hospital that handles Lily’s hormone blockers for her gender issues. We’d already received an appointment for the previous week, which was then cancelled and changed to a phone call when I discovered the train fare would cost us over £300, and all because the clinic had forgotten to refer us to a more local service. But now the nurse was saying that our GP was apparently refusing to prescribe or administer the injection Lily receives every 10 weeks, so our only option was to travel down to the clinic to receive it alongside a final health check before they referred us to local services. With less than a week’s notice I was now left arranging travel – which ended up in an overnight stay as it was still cheaper to catch an off peak train the day before and stay overnight than it would have been to buy a peak ticket on the day of the appointment.
Given it was half term and Ivy was going off to stay with a friend, it seemed like it might be fun to spend a couple of days in London together with Lily. And, in the event, there were moments of fun. Except, that this was Lily, and so none of it can ever be straightforward. From the stress of trying to get her up, dressed, and out of the house on time for the train, to the meltdown on the train because there were no seats, to the tantrum when she inexplicably decided that I should buy her a full length leather coat right now, to absent-mindedly leaving her phone behind in the hospital toilets followed by a panic attack/meltdown until it was handed back to us, to giving me hell because we’d been sent up to the paediatric ward for her jab and Lily wanted it made clear that she wasn’t a child any more, to refusing to cooperate when the nurse wanted to measure her shoulders and hips as she’d not had to do it previously and she “didn’t trust it,” to her outrage at missing Halloween and how I never should have arranged the appointment in the first place (It wasn’t me, Lily, it was the hospital and this was the only day they could fit you in, otherwise you couldn’t have your blockers)… oh dear god. By the time we got home I was utterly exhausted – only to discover that Lily’s bedroom window was wide open, along with the heart-stopping fear that we’d been burgled. Thankfully, we hadn’t. But, I decided, I could be forgiven for choosing never to leave the the house ever again, particularly not with Lily in tow.
It’s hard, it’s so hard because this is what autism looks like – and for the most part it looks like bloody horrible behaviour rather than a recognisable disability. It’s hard not to get sucked in, not to get angry or frustrated by it. If Lily could do better, she would; that’s the conclusion I have to come to when her behaviour gets her thrown off the college course she absolutely loved. She wouldn’t have chosen to be expelled, she just can’t control the way she behaves when she’s anxious. And being autistic means that she’s anxious a lot, the world is a very overwhelming place. To make it worse, out in public most of the blame is put on me as her mother. I’ve obviously just raised her wrong, there’s still precious little understanding around autism and ADHD.
Recently I started keeping a Carer’s Log. A simple diary outlining what I’ve done that day that relates to handling Lily’s autism/ADHD and epilepsy whether it’s phone calls to arrange appointments, sorting out paperwork, or having to give her reminders to help her manage her time, or take her meds, or the time spent handling a meltdown or trying to adjust her behaviour. I’m not sure why I started, possibly a glimpse of intuition that this might become important in future, particularly for dealing with PIP/Carers Allowance claims. It’s too easy to feel crushed under the weight of right-wing rhetoric that labels disabled people as scroungers, to start feeling guilty for claiming benefits when the reality is there would be no way of coping otherwise. It’s only been a couple of weeks since I started, and already the Carer’s Log has been an eye opener. It’s too easy to overlook how much you’re actually doing as a carer, over and above what you’d be doing as a parent for a child without SEN.
How to keep a Carer’s Log
- Decide on the format that’s going to work best for you, whether to write in a dedicated journal, or keep a document on your phone/tablet/laptop. It’s crucial that it’s easy for you to update on a daily basis, otherwise you’ll keep putting it off and will end up forgetting a lot of the detail.
- Decide what time is best for updating your log, I recommend doing it in the evening so that the day’s events are fresh in your mind, however you might want to avoid using a screen device close to bedtime.
- Make sure you record directly into your log rather than keeping random notes all over the place that you’re planning on updating into the log at a later time. Inevitably, you won’t get round to it, or will lose half of them.
- Keep this separate from any records/files that you’re keeping about your child’s condition; I have a large file containing all of Lily’s medical history, educational records etc that I frequently refer to as needed. My Carer’s Log is recorded separately, not mixed into the rest of her records.
- Update the log on a daily basis, even if you’re logging “Nothing to report” for the day, just to get you into the habit of doing it. However, I’ve not yet had a “nothing to report” day, there’s always something!
- Absolutely everything connected to your child’s condition should be recorded, such as calling to make appointments for them, driving to meetings with school, time spent researching aspects of their condition eg recently I’ve spent a lot of time online looking for information about supplements and diet for ADHD. It’s easy to otherwise overlook these things and only record the time you spend directly dealing with your child’s issues. Even the fact that I usually have to send multiple texts to Lily to remind her to come home on time after youth group gets recorded!
- If your child has toilet issues, these should also be recorded.
- Do you spent days and days trying to persuade your autistic kid to take a shower? Make a note of when you started asking, and how long it is before they actually take a shower – this can be two weeks in Lily’s case! It also acts as a reminder as to just how long it was since they’ve bathed, rather than it being a vague thought in the back of your mind that it might be about time to chase them into the bathroom!
- If your child takes medication or supplements relating to their condition, list these at the start along with a brief description of what’s involved; you can then write “gave them their meds” or similar on a daily basis rather than writing it out from scratch each time. But don’t forget to add in these details about meds, they’re obviously an important aspect of your child’s health but one that’s easily forgotten in a daily log as they’re so routine!
- There are no set rules for format etc, so you are free to choose your own style, whether you prefer writing in bullet points or being more descriptive. You might need a mix-n-match style, using bullet points to document routine items such as medication or physical therapy, followed by a descriptive paragraph to record how the day went.
- Try to make sure your Carer’s Log won’t be read by your child – keep it somewhere they won’t think to look, or give it a very boring title if it’s a computer file. For this reason, be careful about the language you use – it’s simply a record, not a judgement about your child’s issues and behaviour.
- If you’ve had a particularly trying or exhausting day due to your child’s difficulties, you might want to add this in, eg “Today was very challenging.” You don’t need to go off on a three page rant, but it can help to record what happened, and ideas of how to prevent it in future.
- You can also record things that worked, or ideas that you want to try in future.
- It can also help to add in photographs- for example the horrendous pile of rubbish I recently unearthed from beneath Lily’s desk! If your child has a habit of dressing in unsuitable clothing due to autism, a picture can be a good idea before you get them changed. This can act as evidence during a PIP interview.
- Educational struggles are part of your child’s condition, so list these are they occur, for example having to attend meetings at school because of their “behaviour,” applying for an EHCP, or even the ways in which you have to intervene to keep your child calm while they’re getting frustrated due to homework. Yes, all kids get frustrated with homework at times, but most kids won’t smash up the computer or punch their little sister as a result… which is why you’re constantly on the lookout for your child’s warning signs and intervening as necessary.
A Carer’s Log can help you to feel validated in your role as your child’s Carer – a role which demands you go above and beyond the normal role of parent, in a society that constantly devalues both your and your child’s experience. It can act as a valuable record and evidence that you can refer back to when dealing with authorities, such as applying for PIP or an EHCP. Hopefully too it will allow you to treat yourself with more compassion if you’re dealing with the self esteem issues that seem to inevitably arrive when you are struggling with a child whom everyone labels as difficult. The Carer’s Log makes it apparent just how hard you’re working to help your child manage in daily life. Respect.