Special Needs Parenting: How to prepare for a meeting or an appointment

When you have a child with additional needs and/or mental health conditions, it is likely that you will become quite overwhelmed by the amount of meetings and appointments that come your way!

At the beginning of this journey I used to keep a hand written diary of events, in the form of a home/school communication book. However, I quite quickly came to realise that whilst this was useful, for the purpose it was set up for, it didn’t include the additional information I found myself needing.

It became apparent that depending on who we were seeing and why we were seeing them, would depend on what information was required.

I also found that the home/school communication book didn’t factor in all the bits that weren’t relevant to school, but were definitely relevant not only to other professionals, but also to me.

For me personally, I needed something that looked at all aspects, including triggers and patterns of behaviour. So I created another written diary for my own personal use.

However, this was getting all too complicated as these were filling up fast and to be able to pick out certain events, it meant that me having to flick through and read every page to locate specific information! I had to think smarter as I needed to be able to separate various bits of information.

So I started typing these up and categorising/colour coding behaviours into, for example: volatile, hostile, aggressive, risky, impulsive, inappropriate, vulnerable, hyper, sexualised or random behaviours. By doing this I was able to see more clearly patterns of behaviour and/or mood and in turn I was able to summarise behaviours to whichever professional I was sharing this with.

Important to remember

It is important to know and understand, that the various professionals you will be meeting with, will all have their own agenda. However, I strongly advise that you have your own agenda as well and I will explain why….

Preparing for CAMHS appointments

In one of my earlier blogs I talk a little bit about the assessment process and the importance of gathering evidence. However, here I wanted to focus on ‘preparing’ for CAMHS appointments post diagnosis.

After my daughter had received her initial diagnosis, back in 2015 aged 7yrs, of ‘Autism Spectrum Disorder (ASD) with features consistent with Pathological Demand Avoidance (PDA)’, we remained under CAMHS. Just an aside, they were brilliant in supporting her EHCP application and in turn a change in provision!

However, I did quite quickly discover that whenever we had an appointment, with the psychiatrist and Care Co-ordinator, these appointments ALWAYS started with ‘so what are you hoping from this meeting?’, something that I was initially ill-prepared for!

Uh? Sorry, what do you mean, ‘what am I hoping from this meeting?’.

In all honesty, this question not only baffled but frustrated me! In my mind, having provided a comprehensive update on how things were, surely it was up to them to have some direction and let ME know what THEY were hoping to achieve from this meeting?

So after a couple of embarrassing, tongue tied, starts to these appointments, I soon came to realise that I needed to PREPARE for these ahead of time and go armed!

Therefore, after my light bulb moment lol, I did plan ahead and went along with my own agenda (typed up so I had something to refer to)! This generally included an update on how things were going at school and home, any specific difficulties, sleep patterns, concerns about presentation and any photographic evidence of injuries (these, unfortunately, were a common theme back then, and something I would discreetly hand over).

I am sure that I’m not alone (and I hadn’t totally lost all memory capacity, even though this could be doubted lol), but I found it absolutely impossible to remember all of the above that had happened in between appointments! So I found typing it up was a really good way of ensuring I had covered everything!

Additionally, if appropriate, I would write to them prior to our appointment and provide an update. This was particularly useful if speaking openly in front of my daughter was not going to be appropriate. Of course they needed to know some of the more tricky information which wouldn’t have been right to discuss within the appointment.   

I would also throw the question back to them, ‘what are YOU hoping to achieve from this meeting?’. This doesn’t need to be asked in a rude or confrontational manner, however it is important to have the confidence to ask this question. After all, it was them that had arranged the appointment, they are the professionals and there is no harm in asking to be led by them.

Finally, following a CAMHS appointment, you should receive a letter summarising what was discussed and what the outcome/next steps are. I would always respond to these, either reiterating next steps or indeed clarifying anything that was factually incorrect.

I was probably I thorn in their side, however written records are vital! It is also a good way of looking back on appointments should you ever need to refer to them.

Preparing for a Children’s Services meetings – in our case, a Family Support Meeting (FSM)

For our Family Support meetings, again in the beginning, I used to just rock up thinking that the Social Worker leading the meeting would have all the updates, direction and answers. Doh!

Whilst the Social Worker would distribute the previous ‘Child in Need’ plans between the attendees, which generally consisted of herself, school, myself and occasionally the Assessment & Planning Officer or a CAMHS representative, this didn’t appear to cover everything.

Again, for me, it quite quickly became apparent that I needed to prepare for these meetings too.

Naturally, I was required to provide an update on home, however, it also became apparent that I needed to provide a realistic update on school for example. Whilst school were present, they didn’t always necessarily provide the information that I deemed complete. For an example, it would be much easier for them to give a brief overview of ‘generally speaking she is doing well in school’. Well that’s great, however what about the challenges and difficulties?

Again, this information would vanish from my memory had I needed to recall this from memory alone, so I went armed with behaviour slips etc!

I did find within these Family Support meetings that there was a definite focus on the ‘positives’. Again, this is great, however by solely focusing on the positives this was never going to address the difficulties!

Having looked back over ‘my FSM agenda’s’ for the purposes of writing this blog, I had to chuckle to myself as the majority on each of them is pulling someone up for not doing what they were meant to be doing, including the Social Worker! Oops!

However, again it is so important to have a written record of everything to refer back to.

So to prepare for a FSM I would recommend that you make your own agenda to include an update on: behaviours at home and at school, CAMHS appointments, any other service involved ie for us it was Autism Sussex. Make a note on your agenda about what has or hasn’t been done since the last FSM, as well as what may have improved.

Overall, my experience of these meetings have been mainly positive, however, there was a meeting I vividly recall that didn’t go so well! Within this particular meeting the Social Worker turned to me and said ‘Children’s Services are concerned about’ my daughter’s ‘emotional well-being given your fixation on further diagnosis’. I honestly couldn’t believe my ears and I could feel my blood starting to bubble! At this point in time I was pushing for a further specialist assessment regarding my daughter’s visual and audio hallucinations! So you can imagine I was not best pleased to be made to feel like I was in some way emotionally damaging her!

I am, sadly, aware of many parents that have experienced this sort of thing and much much worse! I am not going to scare you with the horror stories, however what I would highly recommend is that if you have Children’s Services involvement and it is not a positive experience, then please make sure you take someone else with you to these meetings! That person can be a family member or friend or indeed someone from an advocacy service, not only to note take but also to be there for moral support. You can google advocacy services within your local area.

I would also recommend that, should you feel the need, a Dictaphone is used to record the meeting. There are discrepancies as to whether or not a) this is legal and b) whether you have to inform the attendees. My understanding is, and please do double check this for yourselves, that you are allowed to record meetings, without notifying the attendees, if the purpose of doing so is for your ‘sole use’ and is not to be shared with anyone else.

Of course, for transparency reasons it would be considerate to inform attendees, but my understanding is it is not compulsory. But again, please do double check the legalities around this.

Other meetings and appointments

Whilst I have focused here on meetings and appointments with CAMHS and Children’s Services, these principles can be applied to any other professional meeting or appointment you may attend and preparation is key!

Don’t waste the opportunity of having your say by being tongue tied, as I was, or by having short (or long term) memory loss!

NMWUK Top Tips for meetings or appointments:

  • Be prepared!
  • Type up or write down your own agenda
  • Ensure you have the necessary information prepared for the meeting/appointment, including any evidence or questions
  • Make a note of what you would like the outcome/s to be
  • Ask whoever has called the meeting/appointment what they would like the outcome/s to be
  • Provide written information prior to meeting/appointment if applicable to do so
  • Take along a note taker and/or someone for moral support as sometimes these can be overwhelming and you may miss something
  • Make a note of any actions and follow them up
  • Follow meeting/appointment up with a written summary and/or respond accordingly to any correspondence that you receive

Finally, employ an admin if you can afford to do so!! Haha, only joking as appreciate this is impossible for most of us, however some days I truly do believe this would be an amazing asset!!

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