I often hear from the media or professionals that “we shouldn’t label children” and this gets me somewhat frustrated. I’d argue that that’s exactly what we should do but as a starting point not an all-encompassing description.

I sometimes wonder why people take this view-point at all and when I’m feeling cynical I’d say it was because of their own agendas. In my experience the ‘let’s not worry about labelling him’ or the ‘let’s concentrate on what he can do rather than what he can’t’ tend to be the sort of attitudes that come from people who don’t understand or want to acknowledge the severity of the disability or its impact on the family.

I’d really love a label for my son. It would give us a starting point. Somewhere to go to when considering how to treat him both medically and personally.

He often shows quite distressing behaviours but we don’t know whether that’s part of his ADHD, ASD or SPD. You treat one and you run the risk of making another worse.

I’m not really sure what’s wrong with a label. Consider mine: wife, mother, daughter, sister (not that descriptive) carer, support worker, horse lover (equestrian), coffee drinker, sporadic and reluctant runner, Archers follower and you get a bit of an idea about what I’m like and what’s important to me (maybe I should add blogger!)

And that’s all I’d like for Jacob. A bit of an idea of what’s going on with him and understand better how he works, and what’s important to him. You wouldn’t think that because I’m a huge fan of ‘the Walking Dead’ that I only watched zombie/ apocalyptical horror box sets, (Actually there aren’t that many good ones anyway!). Mad Men is the best thing I have ever seen! What I’m trying to say is that one part of us is not the whole of us. We are not defined solely by our work, hobbies, TV viewing, opinions, medical or developmental disorders. They are just part of what we are.

After all, we are all complicated… just some of us are more complicated than others!

By SWAN UK member and parent rep for Nottingham, Jo Burt

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