I often have friends (who are fully aware of our situation) come to me and tell me about a friend, or a friend of a friend, who are experiencing similar challenges with their child that I have and continue to experience with my youngest daughter. They ask whether I would mind talking to these parents and sharing experiences, my immediate response to this is…’of course not, I have no magic wand, however I am more than happy to talk to them and also reassure them that they are not the only ones experiencing these difficulties’.
I often raise, particularly when first speaking to other parents who are at the beginning of this tricky journey, the importance of keeping a log of your child’s behaviour (the good, the bad and the damn right ugly!). I cannot stress enough the importance of this and is, not surprisingly, often not the first thing you think to do when you are still in disbelief about the behaviours your child may be displaying and coming to terms with this in your own way.
Keeping a record of behaviours not only provides an opportunity to look for any potential pattern in behaviours but is also a very useful tool to have to refer back to when sharing your concerns with and feeding back to professionals. As a parent of a child with Special Educational Needs or Disabilities (SEND) and/or mental health conditions, you will quickly come into contact with many professionals, all possibly with different agendas and requiring different information.
I remember when we first started attending CAMHS appointments (5 years ago, aged 6/7yrs), they would generally ask two main things a) what are you hoping from today’s appointment (something that I initially wasn’t prepared for as I naively believed that they were going to tell me what they hoped to achieve not the other way round – they were the professionals after all, right?) and b) how are things?
The second part of that question (b) was always extremely difficult to answer. It had been 6 weeks since our last appointment. How could I possibly begin to remember every single little detail or indeed recall, in detail, every single incident? The simple answer to this was, I couldn’t! There was no possible way that my brain could retain so much information. I struggled to retain just the daily behaviour information so that coupled with everything else ie remembering what’s happened at school/meetings/chasing professionals/trying to reach out to many for support etc, it is no surprise that my brain was overloaded on a daily basis!
So you can see how important keeping a diary/log/record is and finding the right way of doing this is very individual. I first started off with the usual school/home (and previously childminder/home) communications book, but fairly quickly I realised that I needed to keep an additional diary for things that weren’t school related.
As your diary log (or whatever you use) evolves it is also a good idea to include any triggers that you may have noticed not only for your own reference but again this is something that professionals are likely to ask.
So for me, after completing several diaries I wondered how I could collate all of this information. This was particularly helpful when attending meetings ie Family Support Meetings. I didn’t want to have to randomly flick through my diary pulling out any necessary information so I had to think of a smarter way to report back and needed to create something that was electronic so I could pick out bits and pieces relevant to whomever I was reporting back to. So I started to record daily on the ‘Notes’ pages on my phone. I was then able to email them to myself and collate on a Word Document (I’m sure in this day and age there is a simpler way of doing this ie having Word on your phone? I’m not that technically minded but I’m sure there must be) and then I coloured coded the information into categories ie volatile/random/self harm/violent/hyper behaviours.
I also discovered a very useful app (website: https://www.tynesidemind.org.uk) when I was recommended by a top Professor to keep a ‘mood tracker’. The mood tracker is a great way to record behaviours in a visual way. Please bear in mind though that you can’t edit the information you enter on the app (only by logging into the website). So what I did was copy and pasted the information I entered on the mood tracker into my ‘Notes’ on my phone. Following a particularly big incident, I found that there were bits that I had forgotten to include but I was then able to add these bits in on my ‘Notes’. The mood tracker has proved an invaluable means of sharing information with the Maudsley hospital, who we are currently under, (as well as CAMHS) as it gives a complete overview.
Furthermore, I would recommend that you keep anything that your child may write/draw. This is also a very good source of information and gives an insight into how your child may be feeling. I even kept post-it notes that my daughter used to feed to her ‘worry monster’. If you have not heard of a ‘worry monster’, these are great! They are soft toy monsters with a zipped mouth that your child can write on a piece of paper their ‘worries’ and feed it to the monster who will then take that worry away.
It may sound slightly odd, but these days I even see writing my diary log as a form of therapy. It’s almost as if by writing it down, I have offloaded it and can move on.
PLEASE, if you don’t already keep a log then start one asap as they are invaluable!!