In this story: Autism / Services and Support /

"If you have met one person with a disability, then you have met one person with a disability."

“Hayden is a very trusting boy, sometimes too trusting. He assumes everyone is his friend and this is a constant worry for his Dad and I. He is kind and we have a great relationship. He loves school and I think the independence is important for him. He enjoys playing and building train tracks, his favourite animal is a lion and he loves Bluey.

He is mostly independent but at the same time unaware of the importance of certain aspects of day to day care. We assist him with his meals, taking his medicines and bathing because if we didn’t, these things wouldn’t happen. He has been learning to cook at school and, for the first time this weekend, we made dinner together and he ate it all!  

Everyday is different and as parents that is how we have to deal with it – one day at a time. Hayden doesn’t sleep very well, sometimes he just wakes up for a chat, and this can have a massive impact on the day. No two days are the same and he doesn’t come with a manual that’s for sure. There is a saying that “if you have met one person with a disability, you have met one person with a disability.” They are all individual and deserve to be treated as such.

Routine is so important and we really try to stick to it but with the summer holidays approaching this is a massive worry for us. His Dad and I both work and we need more out of school support. Hayden doesn’t have a social worker and not having someone to help fight his corner can feel quite alone at times. We are trying to work to give him the best opportunities in life but having little to no support during holiday periods makes this increasingly difficult, especially as he is getting older.

The community have tried to include our children but most of the parents work and the clubs we were invited to try, someone had to stay with him. We weren’t able to leave him to enjoy it on his own. We know it is hard because one size doesn’t fit all but the lack of trying is really getting to everyone and we just want it to be fair. They should be able to do everything other children can do.

As parents we are our children’s advocate, whether verbal or non verbal our children need their voices heard in a way that make people listen.”

Read more Humans of Scotland stories here.

End of page.