Post written for VICTA – helping blind and partially sighted kids.
Dad’s Voice – a post for Victa
Being the parents of four means a busy life. We have three girls and a boy, each with their own challenges.
Both my wife, Gill, and I play our part in trying to organise the chaos – it’s a bit like knitting soup.
Our son has multiple disabilities: epilepsy, psoriasis, double incontinence, registered partially sighted (with nystagmus, septo-optic dysplasia and astigmatism), developmental delay, poorly formed legs and feet, poorly formed centre of brain leading to endocrine problems…
All of this is manageable only by the two of us stepping up and speaking as one.
We play to our strengths, mine being physical – helping a lot with care – and mental – deciphering the gobbledygook served up by the medical world and keeping the diary. Gill does a lot of the routine hospital visits, sorts out prescriptions and does the telephone calls. She deals with specifics while I tend to see the bigger picture.
It works and we communicate and since his first in utero scan consultations up until now, 14 years later, we have become a pretty good team.
We have run into a problem though, which may ring bells with the reader.
Sometime’s Dad’s Voice isn’t heard.
The worst example of this was a consultant paediatrician who spoke directly only to my wife, asking her questions and not only ignoring my answers but actually talking over what I said.
At one point I turned to my wife and asked her (quite loudly) if I should go and sit in the car as the doctor wasn’t willing to acknowledge me. Weirdly, the paediatrician appeared not to hear this despite her three juniors all blushing and twitching with embarrassment.
It is getting better. Younger nurses will talk to me (I love them asking “are you Dad?”). Some doctors will actually turn to me and ask my opinion. The problem still exists though.
A few things may have caused this.
Historically men are not always seen as prime carers. Nappy changing and feeds were once the province of Mum while Dad would work all day and then play with the kids. This stereotype is outdated and, I hope, most Dads now are joining in and sharing the process.
This should be especially true of children with Special Needs. I know that when we attend school events, men are equally represented at our son’s Special School and all are up for a chat about their kids.
Maybe it’s the extra challenges that draw this out of us. We know folk who single-parent disabled children – they deserve our admiration. However, the job is easier with two working together.
One aspect of multiple disabilities that sort of forces your involvement is that specialists don’t often talk to each other. My son sees a brain surgeon, paediatricians, endocrinologists, orthopaedic surgeons, dental surgeons, physios and OT’s, and more. The closest they get to conferring is a quick read through his file before they see us.
His gene specialist took a history when we saw her before Xmas and had to take a break when her hand got sore!
This level of teamwork was necessary early on to make sure we were in control of his care. We felt that the 5 hospitals he attended were taking over and we were quick to rearrange consults and treatment so as not to exhaust him. We learned to speak up politely to ensure his best care, especially when on a busy ward. (The consultant’s secretary is someone worth befriending.)
Weekly visits are now bi-annuals and we only have two hospitals since they centralised care.
So what can we do to make Dad’s voice be heard?
Well first Dads need to pay attention. Specialist are experts on their field. We are the experts on our child. For example Nystagmus varies, as does astigmatism. SOD can vary from poor vision all the way to blindness and a malformed septum can be asymptomatic or extremely debilitating. Every child is different.
Become the expert. Google the terms. Take the handouts…. and read them.
Share with Mum. After every consult we talk all the way home in the car about what was said. I remember and understand things that Gill misses and vice versa.
Be heard. It’s no good walking out of a consult or treatment and regretting not being heard. Open your mouth and ask the questions. Don’t worry about sounding stupid. Professionals love to explain.
Being proactive in your child’s care starts and ends with you.
One thing I have gained from being bolshy proactively involved is a greater sense of fulfilment. Being an advocate for the wee man has made me feel more of a Dad than I would hanging back and leaving it all to Gill.
So, go on. Have a go.