When you have a non-verbal child, you are forced to pick up cues to indicate if he is hurting somewhere or if he is unwell. You have to be alert and to read the signs and effectively, to be a Private Investigator, especially if your child has a high pain threshold and does not cry ever. Joshua has had deep cuts to his head, after a tonic clonic seizure has thrown him forwards into a brick hearth or a porcelain toilet, but he has not cried. The most that he has reacted is to bite hard on the knuckle of his finger and once I have heard him wimper like an injured animal. But when there has been an accident, there is no need for intuition but illness is more difficult to diagnose.
We missed the fact recently that Joshua had a chest infection, until it reached fever pitch, and it impacted on his seizures and we ended up in A&E last weekend. He had an annoying cough for weeks when he went to bed, but nothing that seemed to need cough medicine we explained to the consultants at hospital. From now on, I have learnt that I will not ignore a persistent cough and I have asked school not to take him to the Forest School on cold days, as that may well have brought things to a head this past weekend. Joshua is not as mobile as his peers so that may impact on his ability to shake off a cough.
Joshua has been holding his right foot up in the air in a comedy pose and he always asks to take his boots and splints off as soon as he gets home too. Due to the distortion of his foot position, he walks on the side of his right foot rather than the sole, so he has developed a callous, which we are getting treated by podiatry – though I postponed yesterday’s appointment as he is still too unwell to go outside in the cold air.
The Christmas before last, we had to investigate why Joshua stopped eating. We went to the GP to give him a check up of his tonsils and his stomach and found nothing. Then we made an appointment with the dentist to have his teeth checked too. There she found the culprit – cavities , oral thrush and gum disease – but it was another 7 months before he was treated under sedation. So the investigation, got a result and then we had the frustration of waiting for the outcome that Joshua desperately needed.
With a non-verbal child, you need to follow up changes in behaviour and also read body language, so it helps that as a parent you know your child better than anyone else. Sometimes you just have a feeling that something is simply not right, in that case, go with your instincts. I am often intuitive about changes in Joshua, but I am also frequently slow to take the next step to involve the GP or dentist, as I am usually optimistic that things will resolve themselves. I am going to try, based on last weekend’s events, to refer to health professionals more often and faster and I will continue to be alert to non-verbal signals from Joshua.