When we meet with health and educational professionals to discuss our children and their issues, we , as parents, should always be listened to as experts in our specialist subject, our own children. I met a Mum yesterday who put herself down, she did not feel that she could contribute to a meeting about her daughter as much as others as she did not have the academic background. But I insisted that she was the biggest expert in the room on her daughter, while the others had read about her condition, this mother had lived with her daughter all of her life and so knew every gesture that she made and was able to interpret it. I feel strongly that often a parent voice can be missed,particularly if it lacks confidence. We battle all their lives for help and for some of us it makes us stronger and more stroppy , but others seem to be worn down be the experience, so much so that they are prepared to take a back-seat when faced by ‘professionals’. I may not be familiar with all of the medical or educational jargon, but I am confident that I know my son better than anyone else in the world.
As the parent of a non-verbal child, you become their voice and you interpret even the slightest movement or gesture, knowing what it means. I know that I tend to be able to predict when Joshua is brewing a seizure, though I am less reliable about the precise timing as the build up can go on for days . I have talked about the emphasis that I place on eyes when communicating, Joshua’s eyes can be one of the first indicators that he is about to fit. But I surprised my inlaws once by predicting a seizure from behind Joshua, just by how he was holding his body and how his movement stopped, and I rushed from the kitchen into the snug to catch him just in time.
With a non-verbal child, you have to become their eyes, ears and mouthpiece. We have to interpret and we have to train others, such as school staff, to become as proficient as we are in a short space of time. Something that we have assimilated over years of watching our children closely, we have to try to pass on. Luckily we have the power of video on our mobile phones these days and so we can record behaviour as a training tool, as some of the gestures or changes can be really subtle sometimes.
That is always an anxiety when your non-verbal child goes into a new environment, perhaps a new class at school or as we have recently experienced, an overnight respite provision. I am delighted that where Joshua now goes one weekend in four, they spent a long time talking to me and to school and observing Joshua, before they took him on overnight, so that they were as well prerpared as they could be. At the time I was frustrated by the slow pace of familiarisation, but I can see now that it was worthwhile and we are now reaping the rewards.
I urge any parents of children with special needs who may read this, or any professionals involved with our children for that matter, to recognise yourselves/parents as the true experts; once you get talking, you will realise just how much you know and probably take for granted, because it is just part of your daily life, but it might be something valuable that you can pass on to others, to ensure that the child is better understood, which has to be to everyone’s advantage.