I suppose I am in unique position because I understand this situation
most as I am one of those parents. Before I carry on, I will say that I am not
a reflection of all parents. Just the ones like me.
Teachers have empathy by the buckets. It is probably one of
our key defining features. We can regularly empathise within seconds of a situation.
In fact, if it was an Olympic sport, we’d regularly win as a nation. The
problem, for me, is the difference between empathy and understanding. Teachers
can easily empathise with a parent of SEND student, but rarely will they understand
them.
I had an interesting conversation with a teacher this week
and it highlighted this discrepancy. We were chatting about a situation and I
simply said: ‘Do you know this parent has had to fight at every step of their life
as a parent?’ The teacher simply didn’t see the situation like I do. I have
lived it.
Parents of SEND students have had to fight for everything.
The world would like to suggest that having a disability is one of ease, luxury
and copious amounts of monetary benefits. It isn't. It is about a lot of conflict and
fighting.
Being a father to child with Cerebral Palsy, I have lived
with 'the fight for' over a decade. Everything is a battle. My wife and I are
constantly fighting to get things done or organised. A battle that parents with
non SEND children don’t have. These are
just some of the battles.
The fight to get an EHCP.
The fight to keep the EHCP and it not change.
The fight to get access to specialists.
The fight to get a blue badge.
The fight to get my daughter to do the activities that
others do.
The fight to get regular physio.
The fight to get appropriate splints / wheelchair access.
The fight to get a TA.
The fight to get a TA trained in physio.
The fight to keep the same TA.
The fight to get my daughter to be in the right group and
not just the group where the TA is needed.
The fight to get systems right for my daughter.
The fight to get schools to see things from my daughter’s
perspective.
The fight to get teachers to view my daughter academically
rather than physically.
That fighting takes time and it is the main reason my wife
works part-time, because along with all that there are hundreds of
appointments, meetings and check-ups.
There is also the conflict.
The conflict of being the first on an aeroplane, when others
have had to queue.
The conflict of having a parking space closer to the shop
when others have had to wait for ages to find a spot.
The conflict of having preferential treatment in society.
I’d love to say that people are lovely and kind to a person
with a wheelchair and people with a disability, but that wouldn't always be true. People are kind, but every so
often you get people who are not so kind. I find that people are not happy to
wait when the reason the transport bus isn’t moving is because they
are waiting for me with a wheelchair.
We get looks, stares and silent judgements. Or, people will say something.
It is amazing how in some situations people forget common
sense and human decency.
Then, you face all this alone. The fight. The conflict.
There are not lots of us. My wife and I have dealt with all this on our own, because
we live in a rural part of the world and there isn’t anybody nearby. We know of
no one in the same situation as us. There isn’t a group of us in the
playground. In fact, my daughter is the only child with Cerebral Palsy in the
school. So, we are in a club of one. We have a clique of one.
So, when you talk and have dealings with a parent with an
SEND child, think of the fight, conflict and social unease they have had to deal
with. Think of how they have dealt with this on their own. School is just
another thing to cause fight or conflict. Understand this and you’ll understand
them and their children better. We don’t need emotions or sympathy. In fact, I’d
be bold to say that the last thing I want from anybody is pity. Pity helps nobody.
My sharing of this blog is not about garnering any emotion. I’d stuff your pity
in your face like a big cream pie, if you so much have an ounce of pity in your
heart after reading this.
Understand.
Understand a parent and you understand the situation better.
Understand a parent and you understand a child.
I will leave you with one little bit of understanding. A
perfect example of what made my week. My daughter had a transition day in her new
secondary school this week. During the day she had a PE lesson. The teacher
told her she could go on any of the machines in the fitness suite, including the running machine. My
daughter went on the machine and she loved it. She then told me afterwards, ‘people would
never have let me do this in my school.’ Two types of caring people. One
understood. One empathised.
Empathy can be hindering and damaging in a school. We have
to control it as it dominates understanding. Empathy smothers children. Empathy stops things. Empathy stops people from pushing themselves to the limits. Caring
can stop us from truly helping a child. It might seem like some backwards
logic, but schools often compensate the difficulty of a situation with loads of
compassion.
My daughter, when grown-up, doesn’t want pity; she wants you
to understand that she finds it difficult to walk and that stairs are the work
of Satan. My grown-up daughter, like me, would take the piss out of you, because
bleeding hearts and emotions are not going to get her up those bloody stairs.
Thanks for reading,
Xris