Pushy SEND Parents – Hallelujah

hallelujah-pic    Christmas can be a time of huge anxiety for children with SEND, (especially those with autism) and their parents. Not only are there timetable changes and demands that are little understood and often poorly communicated to the children, they are often poorly communicated to their parents who are then unable to counsel their children through the Season.

Parents often seek to redress this by presenting their frustrated selves to schools and others in order to glean that one piece of information that can ensure a successful concert, performance, participation or simply the survival of it for their child, the school’s one child of many. They know it won’t make them popular with the school and it may risk the relationship especially if they and the school don’t have a shared understanding of their child’s needs. They know that regardless of the risk to their relationship with the school, their child’s success of otherwise this year can move them on or set them back by months. The strain and anxiety this can cause parents can be beyond measure and for a little time they may even lose it completely. This is my experience and I know I speak for many others.

But, for me, this Season so far has been quite marked by the absence of anxiety.  When your child is finally in a placement that is so good at understanding needs, so committed to working with parents, and so determined to give the children the skills they need to not just cope with changes but enjoy them, well what a extraordinary effect that can have on a family.

Just a year ago, Kipper had an opportunity to sing in the Youth Scratch Messiah at the Royal Albert Hall with his club choir. He would have to be there at 10am for rehearsals, have a packed lunch and £3 for a programme, and perform at 2-4:30. There were many other choirs there. The day was fraught with problems and the sensory environment can be overwhelming:

  • The noise both when not rehearsing and when all choirs sing together is incredible.
  • The proximity you must sit to your neighbour can be a challenge.
  • The coordination/planning required to get your coat and bag off and on a peg where you won’t lose it and follow instructions as to where to keep and retrieve your packed lunch.
  • What to do with your £3, and how to know when and how you must exchange it for a programme.
  • How to plan so you won’t need the toilet half way through the concert.
  • How to know which choir is yours when you have face-blindness and the room is full of children.
  • How to ensure you have spotted your parent watching at the performance.
  • How to know when to stand up and sit down and not lose your music.

None of these things are any kind of disaster if you get them wrong or need a break EXCEPT if your disability means you lack the skills to address them or rationalise them in your head. EXCEPT if your lack of flexible thinking skills means you can’t eat one of the teachers offered sandwiches because you’ve lost yours, or be happy to peak at a neighbours programme/music because you dropped your squash over yours. EXCEPT if you are so overwhelmed by the sensory environment that you just have to stim and stim now. EXCEPT if your inability to locate your parent means you are convinced they aren’t present. EXCEPT if you lose your £3 and spend the next 5 hours terrified you’re going to be punished. EXCEPT if you have a toileting accident at age 8 because you hadn’t planned for a long performance or because you were too anxious to use the strange toilets at the venue. EXCEPT where the agreed 1:1 support has decided the mother is overanxious and is nowhere to be seen.

success this year was down to the high expectations of the school he now attends

Well this year he got to sing at the Royal Albert Hall again and the difference in the whole experiences for us as parents was incredible. Some of the success this year was due to having completed a successful day a year ago, set up by his pushy SEND parents and supported by the wonderful choir staff who managed to ensure strategies were in place to make it so. But mostly, this success this year was down to the high expectations of the school he now attends coupled with a commitment to resource those high expectations and ensure he is equipped with strategies to be flexible and ask for help.

This time round I was sat in the cheap seats right up at the top where Kipper had little chance of confirming my attendance, rather than in an expensive box we couldn’t really afford with a huge flag and a torch to attract his attention. I gave him a £5 for the £3 programme and told him he could keep the change if he didn’t lose it. I made him sandwiches because they were convenient for me (he hates sandwiches but, tough). I knew if he lost his coat he would tell an adult and attempt to find it or plan to wait until the end so I could help. No adult was seated near him nor did I ask for one to be. Tonight he is in another concert at a venue he’s never visited before. I plan to get there late and enjoy my new found right to sit at the back and not have to queue early with anxiety.

Hallelujah! indeed.

This morning though, I attended my 4yr old’s 9:30am Christmas performance and went straight to the hall after I had dropped him off.  I thought I was early, but there, sitting right in the centre of the front row was a parent of an autistic child. At first I was surprised, and wondered what magical powers she possessed to get such a seat, – and then I remembered.

they put their child before even their relationships with other parents

So to all settings during this Season, if you find yourself with pushy SEND front-row parents, please be kind to them! You don’t know what anxieties in their child they are addressing by being there, what emotional journey they had to go through in the days leading up and how they put their child before even their relationships with other parents who would probably have liked to have been at the front too. Please also consider what you could be doing for their child this coming year that would make those parents feel more comfortable and able to take a back seat next time. They really would prefer to be seated at the back without the anxiety.