What I want teachers to know about a parent with a child with a disability

Before I start: I don’t want sympathy; I want you to understand.  

I am a parent and a teacher. In this modern age of teaching, I think it is getting harder and harder to do both successfully. Often the school holidays are the time where I make up for my neglected parenting during the term time. Yes, we might have a good number of holidays, but often I am neglecting my own children for other people’s children and their future success. But, I am one of a few parents out there who have an added aspect to consider. As a family, we live with a disability. We live with cerebral palsy. Today, I can celebrate the fact that we have cerebral palsy in our lives, but that hasn’t always been the case. I think only now I can be quite open about things.

Seven years ago we noticed that there was someone not quite right with one of our daughters, a twin. She wasn’t sitting up. Her twin sister was sitting and moving about with some dexterity; she sadly wasn’t sitting up and she only moved on her tummy. These concerns led us to a doctor. The doctor, without battering an eyelid, told us that he suspected that she had cerebral palsy and she will probably never walk. Stunned, shocked and worried he guided us out of the room. We had no explanation, no support, no guidance. He diagnosed our daughter and left us to it. The discovery of something medical is usually guided by a leaflet. Oh dear, you have asthma – here’s a leaflet. We had nothing. Nobody offered us a warm smile or suggestion the future would be positive. In fact, you probably have more warmth and kindness when you put your car in for its MOT. We had discovered our daughter’s life would not fit the ‘normal’ pattern we had planned in our rose-tinted minds. A child is unfulfilled potential. In the pregnancy, we predict and plan a life for them. We know the future is unknown but we optimistically know it is going to be full of good things. When life puts a pin in the balloon of life, you look at everything differently.  

As a parent of a child with a disability, I am shocked and angered at how things are set against you. If the treatment of the diagnosis was tough, I wasn’t prepared for the experiences we had over the next several years. What I thought was a doctor acting professional and with an emotional detachment was actually an issue in society. We have a lack of emotional empathy. Our experiences have been tough and have been angering, but they haven’t, I hope been born out of malice but born out of ignorance and a lack of understanding.

I have accepted that my daughter’s life will be different in some ways to her sister’s, but it will be very close to the life she wants. To do that, I have had to fight. Metaphorically, I have had to toughen up and ask the difficult questions and force my case. There have been several occasions that have led me to be a fighter and being forceful in life and in schools.

Rejection

If I thought a class of thirty Year 11s was tough, I wasn’t prepared for what I would face in the name of rejection. My wife and I have had one or two friends drop us at the drop of a hat. We have become the ‘elephant in the room’ and people didn’t want to be associated with us. You’d think we go around wearing black and constantly crying about our circumstances; we don’t. A disability is like having your own ‘shallowness’ detector. It seems people didn’t want to be associated with us because they couldn’t play the hidden game of constantly comparing offspring. Tarquin could walk at one. Tarquin slept through the night from the first nights. We are so lucky.  

The rejection has occurred in other ways. Parents in parent group events haven’t engaged with us at parties and other events. It is like the ‘Mean Girls’ replicates itself in the adult years. Having a child with a disability, clearly doesn’t help you with the cool stakes.

Rejection has helped us to see the people worth knowing.

Time

There is a false myth that people hold about disabilities: things will get better. When we first informed people of our daughter’s diagnosis, we got everybody telling us that things will get better. It is a nice thing to say, but people do actually believe it. Cerebral palsy doesn’t change, but things can make living with better. The problem is that time is important. The quicker you can train a child to use a wheelchair, the quicker they master it for life. The sooner a child gets physiotherapy, the better their movement is.

We have had to wait months for boots and in that time my daughter has outgrown them. Time goes even quicker for children and it is important that things happen as soon as they can for a child with a disability.

Of course the obvious thing for a parent with a disability is the morbid fact that my child will outlive me. As a parent, I am conscious that my child needs to be independent. It is a tough world out there, and, sadly, it is even tougher for people with a disability. I know that time is limited. They need to be more prepared than other children. Life is designed with able-bodied in mind. Yes, it might be tough for them, but it will not be as tough for those with a disability. That is why I am keen to act and react on things now, because there may be a time in the future when I can't.  

Time makes me determined to get things done quickly.

Equality

This is the paradox of disability. Life decided that a person is going to be different. However, we all want, and deserve, to be treated equally. This is something that is always floating in our minds. We want our children to be accepted by their peers, but that’s hard to see happen when they always have to wear a helmet on in the playground.

There are schools across this country that do not accept students with disabilities. It is only a handful but I have had reports of parents being told that a school will not be the best place for them by a Headteacher. Inclusion is an important part of modern society and sadly there are a large number of people feeling that it shouldn’t happen.  Or, that the data is more important than the individual. To make a cohesive society, we need an active agent to build cohesion. Sadly, the media works hard to make society divided.

Disabled students should do all the same things. My daughter can’t walk well, but she should do PE with her peers. They should be kept with their peers in lessons. A child’s identity, like our own, is formed on those around them. If a child isn’t around their peers, then they are not going to identify with their peers. It seems such a silly statement, but it is true.  

We all want to feel part of something and for that we need to feel that we are seen as equals.  

When you deal with a parent of a child with a disability understand the rejection, understand the time and understand the equality issues they have experienced. Their journey as a parent has been different. Parenthood is full of worry, but they often have more worries and different worries. Show them you understand by listening to them. Don’t lump their worries and fears together with other parents. They don’t have the same fears and worries as other parents. I have different fears and worries to other parents. I am a different kind of parent, but you need to understand why there are differences.  

I am a very happy person and I have learnt so much from these experiences - but I am a fighter! My daughter can walk, but for only short distances and it takes her ten times the effort to do it. To be honest, I wouldn't change a single thing.

Thanks for reading,

Xris