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,
@MsJoBillington
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.
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