Guest blog by Rachel Tenacious
I am writing this on the back of attending #CoPro19 this week, probably the best conference I have ever been to. The speakers were all amazing and singing from the same song sheet as me.
When you have been "That Parent", a "Persistent Complainer" and a "Vociferous Parent" for as long as I have it can start to feel like you are never going to get your voice heard, when you seem to be so opposed to the system and all that it stands for, it can start to feel that your voice is never going to be loud enough!
But guess what....... There are a whole lot more voices, like mine, they are getting louder and there are professionals on board too. I wanted to bottle some of them and bring them home.
After three and a half years of very successful home ed where we have been supported by a couple of professionals and have been on a learning journey with them, the time came for H to tentatively dip a toe back into "the system"
We were utterly determined not to put H back into a setting where they measure progress by attendance and test scores but ignore clear signs that the child/young person is falling apart. The course for home educated students seemed like a good starting point because it is a very short number of hours, it doesn’t start until 1.20pm and the staff have worked with young people like H who have been through traumatic times at school and those who had been outside the box for a long time [for ever in some cases].
The first true coproduction training I did was selective mutism training with Libby Hill when some of the professionals in the room said they had never been on a training course with parents. This was an eye opener for everyone in the room and we all came away feeling that this is most definitely the way forward.
I joined the Autism Working Group and Selective Mutism working groups in Walsall because I am passionate about sharing the message about coproduction, flipping the narrative and making sure that the families/child’s/young person’s voice stays at the centre of everything.
Flipping the narrative means we start to see the child as the centre of everything and use their ambitions and wishes as a starting point for developing their support.
We do not set targets such as;
"H will speak to 3 people by Wednesday"
In fact we have removed the need for H to speak at all pretty much. She has people around her who know what needs to be done and they don’t wait to be asked to do it they just do it. This frees H up to focus on just being herself and getting through her day. This removes a huge amount of stress from H and as a result of that she is quite often able to speak when she wants to.
The adults around H are not there to encourage, urge, cajole her into doing stuff, they are there to provide a cushion and a protective barrier to help her feel safe.
When the adults around H provide her with that protection she is safe to start to show us what she is capable of.
Recently H attended a meeting with us at college, after half an hour she was due to go to her support group. I reminded her of the time and her LSA offered to go with her but she said she didn’t need her to and that she would come back if she needed to for any reason because she knew where we were. One of the professionals in the room was utterly mind blown at her level of confidence to navigate a fairly busy area of the college independently.
I believe H has been empowered to do this because she knows that the support is there for her all the time and it doesn’t disappear as soon as she looks like she is "coping".
I took the opportunity to reinforce to everyone around the table that this has happened without setting one single target for H.
Trust is a very powerful thing. Our children and young people need to be able to trust that their supporting adults are just that and not just there to push them out of their comfort zone.
As I am gaining more confidence in my role as " An expert team member" I have started to lead meetings, to invite who we need and almost railroad professionals round to our way of thinking.
Many have already worked in a team around the child type situation so suddenly finding themselves back in this situation is not too scary for them.
This is called Co-production and the aim is to put us as parents, children and young people on a level playing field with the professionals. We know our children better than any of them, we spend every day finding out what helps and what doesn’t.
Now is the time to flip the narrative and start working from a point of what the child or young person can do and stop focussing on what they can’t. When we trust them and stand beside them they move forward at a pace that is right for them.
If you are interested in learning more follow these people on twitter for starters and get involved:
@gdmorewood @elly_chapple, @StarlightMcKenzie , @AspieDeLaZouch, @Andylowarousal,
By Rachel Tenacious
A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15.
We removed H from the education system in 2015 after she had what we now know as an autistic burn-out.
The school system didn’t suit H at all but home ed has been amazing.
Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.