We should be used to it by now. It’s by far from the first time, and with the most optimism I can summon I know it won’t be the last when someone applies an assumption to Isaac based on appearance.
This week Isaac succumbed to the virus / infection / nobody-is-really-that-sure-so-throw-antibiotics-at-it-and-lets-see that has been causing him breathing problems for 2 weeks or so. We know, unfortunately, that there is no paediatric ENT provision in our area so it was a trip to another hospital further away to get him seen in a hospital where Isaac’s ENT history is known and his notes are, because initially there was some feeling that the issue may be related to his Trachy.
When he was admitted he was reviewed by a Paeds SpR who asked the question (to us) as Isaac was smiling away at him ‘Do you think he knows that he’s in hospital?’
Well, needless to say, he does. In fact he becomes noticeably anxious when we get him through the outer doors of the hospital. He has spent over 180 days in them, so it’s understandable. Isaac has never, ever made a sound from the day he was born but it’s pretty clear what he thinks about hospitals per se. Still, he’s one of the most tolerant, accepting children that any of his regular ‘team’ of health professionals have met. He conveys more with his eyes than any oscar winning actor. He has no discernible learning disability, according to not just me as his clearly biased dad (because us parents are always subjective, right, yeah, all the time) but according to the educational psychologist who has been assessing him for months. He has developmental delays associated with lack of self directed play experiences, but that’s it, he can and does learn. I’m not going to go into a ‘what he can do’ list, it’s not essentially relevant.
What is relevant is the way that someone can walk into a room, see the disabled child and decide, subconsciously even, that because they can’t speak they must have cognitive impairment. Even if you think it, maybe try communicating with the disabled child. Maybe even try seeing the child first rather than their disability. Isaac is a little dude with a disability, not a disabled little dude. Semantics, maybe if you want to say so, but its pointing the finger at what happens when you don’t challenge your own inner lack of awareness if your not someone who has already challenged it.
If the Dr had asked Isaac directly ‘how are you’ he would not have got a verbal response. He’d have maybe thought ‘awww, he can’t understand’ but believe me, Isaac understands the question. He’s frustrated as any three year old is when they aren’t listened to. But his communication is trapped behind muscles that don’t do as he wants them to. It shouldn’t be dismissed because he doesn’t meet you at ‘your’ level of communication. It’s your fault that you don’t have the patience to even ask the question to make him feel like you care.
I’ve written (and spoken) a lot about communication in other blogs and this is ‘another’ one of the examples, the freshest. It taps into a wider issue about seeing disability first and what we are trying to achieve through Izzysbusy (www.izzysbusy.org.uk and @izzysbusy if you’re not already with us on it). That Doctor, had he had the opportunity to learn about what CP really is, more importantly what it isn’t and what matters in communication would perhaps never have asked such a ham-fisted question. Isaac is a a three year old that has come through things that adults would have crumbled having gone through, and is my driving force in blogging, talking and more. He deserves to be asked ‘are you ok, how is hospital?’ by someone who cares and will take time to find out how to communicate with him. Without that, it’s a lifetime of being a second glance, a person who’s views can be asked to a third person. How does that make you feel? Or maybe I should ask your mum and dad.