"Sensory Processing Difficulties"
About: Perth Children's Hospital Perth Children's Hospital Nedlands 6009
Posted by aquilakj34 (as ),
My child was diagnosed several years ago. Life started getting easier at home but I feel it's not getting any easier in Perth Children's Hospital. We are exhausted from giving constant verbal handovers every day. It seems we are met with defensiveness and defiance almost every day because of it.
I thought our biggest issue to date was the fact it wasn't being handed over that our child has Autism Spectrum Disorder and SPD, but it's becoming painfully more obvious every day that I believe, not many people know what it means, nor do they know how to care for my child or speak to my child.
I keep hearing that no two people with autism are the same. I feel all children would benefit from some pointers, but more so our sensory kids. Things like:
- not being woken up so abruptly all the time
- not waking up to PCA's changing their bin (which I feel almost sounds like a clap of thunder in the room)
- people entering the room quietly
- asking which dressing they prefer (regulars who have infusaports for example)
- asking if you "can have a look" at or "can I touch your - (e.g. arm)".
- and the words "it's just" need to be banned from hospital vocabulary in my opinion.
- "It doesn't hurt" - Be honest, say it's kind of like a mozzie bite that goes for one second.
Of course, you can't tell a toddler "It is essentially 'just'" - they won't understand. Teenagers, in my opinion, are definitely affected by so many years of, it's just an ultrasound.
My child has been told, "it's just...", "It won't hurt...", "this will work...". I believe my child is psychologically scarred by the classic medical rhetoric. My child now says everybody lies and asks why does everyone want to give them pain. You can't simply explain to them that no one means to, and everyone means well. Everyone that touches my child inflicts pain on them right now. It is so hard for someone with receptive and expressive language delays to 'just get used to it' and to hear that 'they'll get used to it' and 'they're an adult now'.
I believe my child feels like they don't receive compassion and empathy now because they're an adult. I have put in feedback about this months ago. Ward Profiles and Sensory Profiles are rolling out in November! We need action now!