The Fight: understanding parents of SEND students

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 parent who has to park close to the school for physical access when the others have to pack elsewhere.

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