Managingbehaviours

in children with special educational needs (SEND)

When I was initially asked to write a piece about managing difficult behaviours in children with SEND, I was really looking forward to writing it…especially given my experiences – both personally and professionally. However, when I began to scribble some ideas down I realised I couldn’t possibly fit everything in.

You see, what’s challenging for me may not be challenging for other parents and vice versa. My poppet may display behaviours that are considered challenging, whereas other children and young people with the same or another rare condition may not display any or all of the behaviours she does. Sometimes behaviours that challenge can happen in particular environments. Sometimes people (like my girl) may use those behaviours for sensory stimulation, when she’s in pain, or happy, or feeling unable to control a situation or unable to express herself, or whatever.

The area of challenging behaviour seems vast, unique to the individual, and sometimes really quite complex. So, I’ll leave the definition alone. What I can do is share a little of our experiences in the hope it may help someone else.

My girl may grind her teeth, bang her head and will often even bite her hands. She used to be a great fan of eating things that weren’t food (still does sometimes) and she’s bitten other people, pulls her own hair and others (especially mine). She has a penchant for throwing things and is completely unaware of her own safety and that of others. She has THE most magnificent pincer grip…hence the reason I always have a tube of arnica cream handy. My arms, regularly, and throughout the years, have been peppered with painful little bruises. The list of behaviours, to be honest, is quite long.

To feel ‘attacked’ can feel quite demoralising. Furthermore, to see my child hurting herself has left me feeling powerless and upset. Over the years however have become more accustomed to it, at times perhaps desensitised to it even. No matter what I do or don’t do, no matter how many strategies I put in place to help her, or how many professionals I’ve sought help from, I know I can’t and won’t ever ‘cure’ her.

Hannah was diagnosed with Cornelia de Lange Syndrome whilst still a baby. CdLS affects between 1 in 10,000 to 30,000 live births and is present at birth. Individuals may display physical, intellectual and behavioural characteristics. However, it can be widely variable and not all people with the condition will show all of the aspects.

For more information visit www.cdlsworld.org which can signpost to the different Foundations. If based in the UK you can find out more at www.cdls.org.uk

The first International consensus statementtreatment and diagnosis protocol is linked here: https://www.cdls.org.uk/ treatment-guidelines/

First off, I observe; read her body language, consider whether there’s a trigger, like the environment – sounds, smells, crowds etc. She’s communicating something with me. What could it be?

I try and stick to a routine, so my girl knows what to expect.

I use pictures and now and next boards. I ask others to use these too.

Given she’s non speaking, I consider whether she’s trying to communicate something to me or others. Is she in pain or anxious or overstimulated?

I keep a diary and look for patterns. Is there a sudden change in behaviour?

I try and de-escalate – taking her away from an environment if necessary or I try to distract her, or encourage her to do something else; for instance, when she’s biting her hands I ask her to squeeze them and demonstrate it myself.

I always try and communicate with others, like school, sharing research papers, professional or personal guidance and any changes in behaviours at homeso that we’re all singing from the same hymn sheet, so to speak. I work at ignoring behaviours so they don’t become cyclical, or praising and rewarding where appropriate.

I am also good now at ignoring other random peoples idiotic comments, those who know absolutely nothing but believe my parenting skills need improvement and their remedy to my child’s behaviour would be the same as what they received i.e. a clip round the earhole because "it didn't do them any harm". Oh sigh. Where to start with that one, eh?

I’ve sought advice and guidance from other parents and professionals too.

I’ve also learned to feel no shame in expressing just how hard navigating this journey, with no compass, can be for me too. Sharing really can be cathartic.

I try to remind myself that I know my child best. Strategies for one child may not be appropriate for another and when she’s directing her attentions at me, whilst it sometimes isn’t very pleasant, I never take it personally and try very hard to keep calm.

I cannot stress this enough, I listen to my gut feeling. I trust it. Intuition has got us out of many a potential scrape.

Behaviours that challenge can be difficult for all concerned. However, there are times when I have been able to reflect and almost/sort of see the funny side - despite (at the time) cringing and wanting the floor to open up and swallow me! Like the time she kicked over a whole table of crockery in a very nice coffee shop. Oh, she thought that MOST amusing.

There was also the time her little jaws latched onto a rather elderly lady’s delicate hand… and wouldn’t let go…whilst we were waiting for the lift in a department store. I had warned the lady that Hannah did have a penchant for biting, however, she chose to dismiss it. Little did she know that the angelic little face looking up at her was looking for a new victim. Thankfully although the lady’s eyes almost popped out of her head Hannah didn’t manage to break the skin and no tetanus was required.. phew! To clarify, the funny side is very relative, and is more about my levels of ‘cringiness’ than Hannah causing destruction or harming others. My child may have profound disabilities, but my goodness, she can be hilarious at times.

So, where can you seek help? Well, for a start, you could talk to a GP, Health Visitor or Paediatrician. They might be able to refer you to someone more specialised. There’s lots of information on the internet too and we’ve included a few great links below.

There will also be social media support groups available, including Same but Different’s RAREchat Facebook group, also linked. Other special parents with lived experiences are often able to provide great hints and tips, and there may even be groups in your local area if you’d like to, or have the time to, meet up with others.

I guess the message I’d most want to convey to parents like me, especially ones that are just starting out on their own journey is that you’re not alone. Please always remember that. Never hesitate in reaching out.

We will catch you!

USEFUL LINKS:

RAREchatUK

RAREchatUK: hosted by Same but Different| Facebook

Contact: https:/ /contact.org.uk/ Here’s a fabulous (in my opinion) factsheet with links to other resources https://cerebra.org.uk/download/factsheetmanaging-challenging-behaviour/ FLACC pain scale https://cerebra.org.uk/ download/flacc-pain-scale-infographic/

Annie writes a brilliant blog on Facebook, which is full of her candid and often humorous insights to their world. You can find her by searching for ‘My kid loves broccoli.’

She has also written, and co-written, books, we’ve included the details below: Cornelia de Lange Syndrome – A Shared Journey: https://www.amazon.co.uk/ Cornelia-Lange-Syndrome-Shared-Journey/dp/ B09MYTK86Z/ref=tmm_pap_ swatch_0?_encoding=UTF8&qid=1639848104&sr=8-1

The (little) Book of Broccoli: https://www.amazon. co.uk/Little-Book-BroccoliDoodles-Journey-ebook/dp/ B092TMFD87