The Essence of Inclusion: Understanding Individual Needs

Today I want to talk about inclusion and what it really means. 

Inclusion is not just about being allowed into the building, there’s no point being given the key to a door if you don’t know how to turn it.

Inclusion will look different for everyone, it’s not a one size fits all approach. 

Every single person has different needs, things that make their life “work”. With Charlie it’s a lot of things, it’s complicated and you need to want to understand. 

It’s not about mere supervision, it’s about understanding. Charlie has multiple needs across all aspects of his life, physical, developmental, health and emotional. 

Much of his life is routine, change the routine and he will suffer. He understands life in a very linear way, certain people are in his life at certain times. 

In his mind, if it’s not your time then he will repeatedly say “bye” even if he knows you,  even if you matter to him.

Emotionally he struggles, he can’t understand simple things like “where is Daddy” if he isn’t where he should be at a specific time he will be inconsolable. 

He feels perceived rejection keenly and an inability to process this can lead to a meltdown and this can put him at risk of harm, mentally and physically. 

If you could prevent him feeling this, if you could prevent him suffering, wouldn’t you?

Inclusion isn’t just about being in the building. You can be in the building and be alone and afraid, even in a room full of people. 

Inclusion is understanding, Inclusion is the will to adapt, Inclusion is making changes to benefit another with no gain to yourself.

Charlie deserves to feel included, Charlie deserves for people to understand the things he does not. To make changes to accommodate for the damage in his little hurt brain.

People need to understand that a parent’s desire to prevent harm or distress in their child is not aggressive or awkward behaviour. 

Charlie has no voice, it doesn’t mean he doesn’t have needs. He has to be safe, he has to be happy and happiness to him is dependent on so many small things that you have to care enough to know. 

Every child deserves a champion, every child deserves to be seen. People need to understand that decisions that relate to a child with complex needs are as complex as they are. 

When you have seen genuine fear in your child’s eyes you would do anything to limit that, that is not aggression. That is love, care and compassion and no parent should ever feel bullied into following an action that would knowingly distress their child. 

Failure to listen to the concerns of parents, an attitude of I will do what I want and if you don’t agree we can’t work with you is bullying and it is exclusion in its simplest form. 

As a parent, who would knowingly distress their child and put them at risk of harm? There is so much about this journey that tries to invalidate your opinion and diminish your power.

I’m here to say that as a parent my child’s needs will never be dictated by someone who does not understand him.

We are so lucky to have so many people in our life who have taken the time to understand Charlie, they make his life better. It is the inclusion that we have found that makes the lack of understanding more startling when we encounter it.

Written by Emma Pilling of About a Boy and Hydrocephalus