By BY SWAN UK MEMBER, PARENT REP FOR NOTTINGHAM AND BLOGGER, JO BURT - itsallapickle.wordpress.com
A few months ago now we arrived at Jacob’s holiday club venue too early, so rather than wait in the car park we go off to the nearest cafe to waste half an hour. I rarely say no to coffee and Jacob has never been known to turn down cake… well any food actually. I clearly remember the message in his home / school diary. “Jacob didn’t want his lunch so we asked the nurse to look at him and he’s got a temperature!” Getting form the carpark to the cafe can be a bit of an ordeal as he’s very excited about the traffic. This prompts his behaviour. There’s usually an episode of panting and hyperventilating, gulping and then holding his breath. He then sort of gurns and thrashes about a bit until he gasps again. Since he’s been on some new medication these episodes have been less frequent and less severe. Although he goes pale he rarely turns blue like previously… always a good thing I think. They come on when he changes environment so when we go into the cafe they start again.
He settles down in a bit. He’s a bit noisy choosing his cake, it’s a serious business but he just can’t concentrate when he’s still thinking about the cars. I choose something for him and have a little pang of “he can’t even choose the cake he wants.”
Anyway, we get the usual looks from the other patrons but only because he makes everyone jump with his loud shouts of excitement. He settles down but one older guy just can’t help looking over. He’s obviously a regular as he knows the staff and quite out of nowhere he comes over and says “have you taken him to the doctors?” I reply: “Yeah just a few” and I’m sure there’s something wittier I could have said but I couldn’t for the life of me think of it right at that moment. I didn’t really mind at the time but writing it now I admit I bristle a little. Why would someone I don’t know think it was OK to make any kind of comment about my son’s behaviour especially when everyone can see he struggles? It’s clear to me then that this guy has “form” for this sort of thing as the waitress, calling him by name, asks him what he’d like and mouths “I’m sorry” to me. “It’s Ok” I mouth back. I tell the gentleman that Jacob has seen a lot of doctors (I leave out the bit that they don’t know what condition he has as I don’t want to get into that one!) He proceeds to tell me that his GP down the road is really good and can sort most things out! I thank him and he goes off to speak to someone else.
I realise that very few people understand the complexity of having a child like ours.
We have been to so many different doctors for their opinion and each time my hopes are raised a little that we might get some answers if not all of them.
We sit in the waiting room thinking that behind the door might be the allusive diagnosis.
There have been times when we have come very close. Behind that consulting room door could be a whole new world of Smith Magenis Syndrome or more recently Pitt Hopkins syndrome. Peeping though the doors I can see parents and their child just like ours and therapies and medication and treatment pathways and….but every time the door closes.
I know the reality could be that there is no one else behind the door and Jacob is unique with his own personal syndrome, just for him!
So here we are in this waiting room. It’s not such a bad place. We know he’s well and happy and yes while any diagnosis would be welcome, there are plenty we are glad not to have. He doesn’t have any medical problems that we’re aware of and as he gets older he is unlikely to develop epilepsy. So here we will stay for a bit longer.
And since we’re part of SWAN UK I’ve found a whole bunch of other families here too. The children aren’t all the same, there’s no particular pathway but we’re all stuck in this waiting room together.