Although I have found it easy and rewarding to write this blog, there is one area upon which I have not touched. I have simply found it too difficult to even really think about, let alone write about.
This week, B will undergo an MRI scan. I don’t know how common this is, how much it is ‘standard practice’ or whether many other diagnosed children have had brain scans. What I do know is that I feel sick to the stomach when I think about it. I’m terrified by what it means and what the outcome will be. In most other aspects of life with B I have been able to read up, ask and learn about the situation. I have a bit of an emotional block concerning this though.
When the paediatrician diagnosed B, she carried out a brief physical examination. This involved measuring his head. To our surprise, after doing this she immediately measured his mother’s head and then my head. She then said he had a large head and would like to carry out a scan ‘to rule things out’. He is on the 95th centile for head size, having been born, I think, on the 85th centile.
I have no idea what ‘rule things out’ means. The doctor was not very forthcoming when we asked her more. Whether this was a strategy to not worry us (in which case she completely failed) or genuine, standard practice for autistic children with certain sized heads, I do not know. The lack of information has left us guessing, which is not a good thing.
But what makes this harder is the fact that I knew his head was quite big and had already had thoughts that this might be unusual. I knew, but I had never said anything. A while back, I started thinking he had quite a pronounced forehead, especially when compared to his brother. Usually it is hidden under his floppy fringe and is not noticable. But I’ve looked, and it is definitely big. At the time of first noticing, I dismissed it. I thought I was probably being ridiculous and said nothing, not even to my wife. Then I buried it deep at the back of my mind.
When the doctor mentioned it I felt an awful rush of realisation, guilt and horror. How could I have just ignored this? My own son and I just brushed it aside.
Some nights later I watched as my wife, with horror, started to realise that I wasn’t wrong. His mop of curls is a very good disguise and no one else has ever mentioned it but if you take the time to look, it’s obvious. We have not spoken about it since.
I’m probably completely over reacting. Babies’ heads are always bigger proportionately and they grow into them. It’s not abnormally big at all- no one has ever commented on it. Autism is a brain condition so it makes sense to have a look at his brain. I’m not being as calm and rational about this as I usually am. But when I think about it, my heart sinks. Reading this back to myself, I realise I sound a little deranged. I have been feeling unhinged of late. I need to be strong for all of us ahead of the appointment.
B will, under sedation, have the scan and then I think it will be some time before we hear anything. I will post again when we have been in for his appointment.