My child has got used to the exclusion we live with

Tuesday November 21, 2017

Please note that this blog might be upsetting to some parents.

The closer I get to the school the more invisible I become. Occasionally a parent will talk to my child, make a show of interacting while their children stand mute, uncomprehending. The parent will avoid eye contact with me and won't even acknowledge my existence.

My child has got used to the exclusion we live with. Not being invited to birthday parties, being the child they are allowed to exclude from games and groups. My child has already said they won't be having any more birthday parties as they have no one to invite and even if they did, they probably wouldn't come.

Earlier parties were painful experiences where I would have to find children to attend. At the last one like this, one child teased my child openly and encouraged other children to do the same. Two sisters ignored my child completely while enjoying and joining in the teasing. They were only there for the food and the soft play and to give their parents a break.

One parent made the effort with us, based on the premise that they thought it would be good for their child to experience a child like mine, for future reference, and that it would be good for me to have their company for a prescribed time and place, as a form of support for so long as it served a purpose for them.

Then there are the people who talk to me occasionally but only on the understanding my child doesn't exist and I don't have any expectations.

Last weekend we were on our own for the whole weekend and we will be for this weekend too and probably the next one as well. I will trawl through local events to see if there is anything we can go to to give us some human contact and interaction. My child and I talk about our exclusion, my child knows they are excluded and they know I am; "they don't invite you either, do they mummy?"

If I say anything I am instructed that my child and I should have a special group or place to go outside school or at weekends to be with our own kind (we don't) with the inevitable inference that we don't belong and shouldn't expect to.

We are all around you. There will be children at your child's school like mine, parents like me. We will be excluded by you - from communities, from institutions, from relationships. If the exclusion and prejudice doesn't manifest itself so explicitly in childhood it will start as the child grows up and increase into adulthood.

We face the brunt of austerity, poverty, hardship and prejudice and we form one of the biggest groups in the UK but you haven't heard of us.

Is it shame that means you cannot look me in the eye? Or fear that it could be you and it could be your child, because it could be. It could be you.

Are you feeling isolated?

Sarah's experience is sadly one many parents will know too well. Our research has found that 72 per cent of parent carers experience mental ill health such as anxiety, depression or breakdown due to isolation.

Many parents find that joining a local support group is a great way to meet other families for friendship and support. There are support groups all over the country, and even if there isn't one for your child's condition, joining a pan-disability group can be a fantastic opportunity to socialise.

You can also get in touch with one of our local offices, which organise drop-ins, workshops and family fun days throughout the year. We can also put you in touch with other event-hosting organisations in the area where you might find the chance to meet other families like your own.