One morning in early December I’m getting up and ready early as we’re taking Jacob to an appointment, but not one of his regular follow ups….this time it’s with a new consultant. I realise how far we’ve come because I’m quite hopeful that not only that we may get some ideas as to what’s going on with our son, but also that they may get real insight into how his behaviour affects him. It’s a 3 hour appointment!

I remember that first referral letter from Jacob’s neonatal consultant to a developmental paediatrician. It must be more than 10 years ago now, when he was 9 months old. I spent ages re reading it underlining and looking up all the words I didn’t understand , but the phrase “….He has the demeanour of a much younger child of about 4 ½ months…”stays with me to this day. I hoped that he had seemed so because he was ill, was having a bad day and would be fine in a few weeks when we had a follow up appointment.

Fast forward 10 years and I’m hoping he has a really bad day and our new team of doctors see him as he really is…at his worst! There’s always a concern that your description of your child’s symptoms is not as effective as actually seeing it. Thank goodness for smart phones, I’m armed with plenty of footage!

The appointment with Neuro Psychiatry is indeed 3 ½ hours long! We’re tired, but slightly more optimistic at the end of it. There have been recommendations and a new drug that might help. However again we are told that “Jacob is quite unique so recommendations are not straight forward… trial and error etc” that’s fine, I’m grateful for the honesty. Although I still find them exhausting I’m much better at this appointment business, but I would have liked some advice 10 years ago when all this started. So whether you’re swan member or have stumbled on this blog here’s what I’ve learnt over the last 10 years and what I wish I’d known at the start.

I write everything I want to say down before you go. It doesn’t have to be a question, sometimes it’s just a list of symptoms or something general that’s popped into my head. I still do this and its actually appreciated by the professional.

I try not to get frustrated if they’re running late! I usually find that the doctors that keep you waiting are usually the ones that will give you the most time that’s why they run late.

Probably the most important thing I’ve learnt for me is to be realistic about what can be achieved at the appointment. In the early days I was always hoping for “ah, yes I know what this is and we treat it like that!” I was always disappointed, and sometimes this was crushing. Our children are complicated, different, difficult to understand and even with a diagnosis I’m aware that we may be left with more questions than answers. I take all my questions along but try to be prepared for the fact that we won’t be getting all the answers that day. It’s just another small step.

I let Jacob be himself. If he’s having a loud, agitated day when his sensory processing disorder is uncontrollable I let him get on with it in the consulting room. They need to see how it really is.

I am acutely aware that whichever doctor we see is a specialist in their field. Jacob’s case has been presented nationally and internationally but still we are diagnosis free. However Jacob seems to be traversing the fields and we are the expert on Jacob. I took armfuls of google print outs of genetic conditions that he could have to our genetic appointment some years ago and said to our consultant “ I hope you don’t mind but could he have this… or this… or this?” He said “of course I don’t mind. I’m the genetics expert but you’re the Jacob expert!” We are the best experts on our own children . So whichever specialist we are seeing will (or should) value our unique insight.

The point is I suppose that we spend so much time with our children and doctors only get a snap shot impression of them which is not enough really when dealing with complicated cases. If there are any new symptoms or behaviours I video them on my phone. I tell them exactly how it is and I try not to brush off or deny how hard it is for me my family care for Jacob. This has been particularly hard for me to do and is a whole blog in itself! One for another time….


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