Sod off medical professionals

Louisa de Lange - 28 Sep 16

Imagine a journey where you’re not sure of your destination. You don’t know where you’re trying to get to, or even the basic route. The only map you have is incomprehensible, and covered in acronyms you don’t understand. You’ll meet lots of people, who know more than you, even on the things you think you know about, and will tell you their opinions regularly without being asked. Some are helpful and invaluable, others are arrogant and destructive, but it’s hard to tell which is which at first. The latter will worry you, be late, confusing and make you think you’re wrong. The best of these will be overworked, stressed and careworn in an ever-changing world. You get lost, you meander, you give up then start all over again, because, after all, this journey is important.

This is what life sometimes feels like to me – the mother of a child with ‘additional’ needs.

I’ve just come away from a TAC meeting to talk about my boy. This is ‘Talking About Child’ to the uninitiated and brings together everyone involved in my son’s care – discussing him and how he’s getting on. The principle is good, but in reality the time I worry most about my boy is after these meetings.

They highlight the problems, the areas of focus and the concerns. They talk about symptoms, typical children, repetitive behaviours, questionnaires and action plans. I try not to get angry or emotional. I usually fail at both.

I don’t recognise my smiling, funny, beautiful boy from these descriptions. He is more than this, and he is much better than this. I interrupt to contradict a statement I don’t agree with; I give up when yet another question is directed away from me.

The effort involved to push for what’s best for your child, additional needs or not, is exhausting. You need to be organised, assertive, persistent and all the time smiling and co-operative to be seen as a ‘good’ mum. I strongly put my views across and fight for what I believe is best for my boy; I worry about being seen as difficult and pushy.

I map out the people I need to speak to next and write my list of to dos. I force myself to go back to the basics. Is he happy? Most of the time, yes. Is he healthy? Thankfully, yes. Is he loved? Very much so, yes.

I take a very deep breath. Sod off medical professionals, I’m a bloody great mum.

Louisa de Lange

Writer. Debut novel, The Dream Wife, published by Orion in Oct 18. I have too many bookcases, too many books I haven't read and an addiction to American TV. Find me on Twitter at @paperclipgirl and Facebook at @ldlwriter.

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