I invited Dominic to contribute after reading his Twitter account. He had free choice of any topic and has written the post below about his experiences taking his autistic son for an MRI
He is the first guest blogger I’ve had the pleasure to work with and I think what he has written is a great read…. Over to Dominic
We knew this day was coming, we were told during the diagnosis phase that this will be a sort of process of elimination to determine what was “up” with my son, Beau. It was a good thing to agree to at the time, we were open to anything, we didn’t fully understand Autism at the time, we do now, but at the time of the treatment process, my wife and I were advised that MRI scans were common and a “advisable idea”. We agreed, we were told the waiting list was about a year or two (when the MRI appointment came I found out that they have a least two no shows a day, think about that next time you’re on a long waiting list) during the wait Beau had an EEG, which emotionally for us was a piece of cake, a big sweet delicious no crying your eyes out cake.
The letter came with an appointment time, we’d kind of forgotten about it but yes this came at a pretty rubbish time, a really busy emotional week where an MRI scan on our severe nonverbal just wasn’t welcomed. Before going in we knew the basics, Beau not being able to understand or keep still would mean he would need to be put under, first off, that sucks. Secondly the prospect of my unconscious son being in a big machine all alone was just a rubbish thought I couldn’t shake, I kind of still haven’t. We also knew there would be a great deal of waiting around, with and without Beau, keeping him entertained was going to be hard and there weren’t enough movies in his iPad, not even close. The problems kept on coming as we read the do’s and don’ts on the appointment letter, next up was that Beau would have to be Nil by mouth after a certain time, let’s put it this way, Beau loves juice like a noise sensitive kid loves ear defenders. This was going to be hard for us, even harder for Beau.
We arrived, praise to the universe he slept good the night before, it’s rare when he does (another Blog), we were put in a family waiting room, this was either going to be surprisingly easy or mind numbing hard. Perspective stepped in, whilst waiting we got talking to parents of children with leukaemia, we met the children and they were hugely inspiring, the parents too. The level of optimism was high, my wife and I were blown away, we looked at Beau, even though this would be upsetting, it could be worse. A lot worse.
The doctors and nurses at the children’s Hospital at the UHW, Cardiff were amazing, they asked us what would make Beau more comfortable given his condition, this helped lots. After a few hours and no more floor to pace, we were told it was time, great timing as Beau was beginning to notice the absence of his close friend Juice. He was prepared and we went down, the water works were firing up for us both, it was just the vulnerability of him going under that was killing me. Was I being over the top? No, I’m an autism parent, there is no such thing as over the top. We were all outside the MRI room, we had previously agreed that on the rule of one parent being allowed in my wife would. I was jealous and relieved. “It’s time” said a nurse (who were all amazingly lovely) I bent down kissed my boy, he went to my wife, was picked up and they all disappeared behind the door. I sat there whilst the previously empty room filled up with families, it had been about ten minutes then the door opened my wife came out crying her eyes out being comforted by a nurse. There were “awwwws” dotted round the room, I ran to her and held her, she eventually got her words out.
Beau had struggled with the gas, he was distressed and didn’t understand what was going on. He needed to be pinned down by the nurses and my wife. Christ. It was horrible thinking about him struggling, I was now crying, my thought process was making it worse and more dramatic each time I thought of it. To the point where running in and grabbing him out of the MRI machine seemed like a viable option. It was a long wait, time drags when you’re both sobbing in the coffee shop, putting people off their muffins. We were told we could see him, we went in and there he was, unconscious hooked up to a heart rate machine. It seemed wrong, so wrong. Beau being Beau wasn’t easily awakened when actually needing to be, the doctor did a neat trick to wake Beau up. Tickling his nose with a pointy end of a rolled up tissue, Beau instantly stirred, rubbing his nose. We haven’t had a strong need to reuse this method seeing as Beau needs getting to sleep far more than he does being woken up.
We were out pretty quick; Beau was back to his normal self in his pushchair even before we had left the hospital grounds. It’s never as bad as it seems, but at the same time it was as bad as it seemed. He was safe, he slept in our bed that night, all was back to normal.
Beautiful chaotic normality