Lorraine’s Story

I don’t even think about the holidays now because I don’t want to think of what we are missing

My son James is 14 and has autism with learning disabilities. He’s mostly non-verbal and needs hand-on care with absolutely everything. He is at a pre-school stage of development in a teenager’s body so he still wants to do things designed for young children but can’t because of his size and age. He also has major sensory needs.

James is full of fun and a great character. His personality fills the room and the moment he walks in the door I can tell what mood he is in! He likes to go to parks and big green spaces where there isn’t any pressure and he has lots of room.

There is very little in the way of organised activities for people with learning disabilities. Just having the odd autism hour in places isn’t enough. Weekend and after school clubs where James could enjoy some independence and have fun would be brilliant because a teenager shouldn’t be glued to his mum all day. Clubhouses are designed for children without special educational needs and any inclusive services seem to cater more for children with autism but without the added learning disability. They tend to run the same activities as they do for mainstream children but without the mainstream children being there. Nothing out there fits James.

I’ve always found that going on holiday is more stressful than staying at home so we simply don’t go. Everyone else looks forward to their summer holiday but we don’t get one. I don’t even think about it now because I don’t want to think about what we are missing. There isn’t anywhere suitable that James would enjoy and there are too many issues to worry about – it’s more exhausting than being at home! We generally visit family instead as they are more understanding than strangers.

It would be amazing to have somewhere to go on holiday where we can all relax knowing James’s needs are met. An ideal holiday for us would be a home away from home. Somewhere safe and comfortable with staff on hand to help you and to give you the reassurance that there is someone nearby if there is an emergency. It would be lovely to have fun activities designed for children like James and trained staff who really understand how to adapt to suit their needs. I’d love a clubhouse where James could have a dance – because he loves dancing – and I could just be amongst other families that understand if he has a meltdown. Families that are just like us and who understand our challenges so I don’t always feel like we are the odd ones out.

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