Special Needs Mastermind

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by Sam Bowen
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Samantha Bowen, three minutes on your specialist subject (insert from list below) starts now....

Genetics; Hip-Dysplasia; Epilepsy; Physiotherapy; Occupational Therapy; SALT; Makaton; Endocrinology; Audiology, Orthoptics; Orthotics; Developmental Psychology; Neurology; Nutrition; Continence; Special needs fundraising; Multi agency working; Paediatric walker design;  The life and times of your local NHS equipment recycling list ... and so it goes on.

My school teachers would be proud of me, especially considering I failed all of my A levels first time round.  Did I mention I’m dyslexic too? 

LBL – Life Before Lucy - must have been acres of time without a specialist subject – I can’t really recall any of that now however. 

The funny part, because I always like to find a bit of humour in it all, is the Consultants always throw in a “Don’t go away and Google it!” at the end of our meetings.  As if the makers of Google are surreptitiously trying to undermine their authority. 

Some of the best explained answers to my complex questions have come from Google and I’m eternally grateful that it’s there – for me  to choose.  Those Consultants, want me to have just enough information to be nervous but not enough to be informed and God forbid, challenge their decisions. 

I’ve found however that what the Consultants want or don’t want you to know about their specialism is also varied. 

Lucy’s Hip surgeon, who I now consider to be a friend, has always treated me like an equal and delighted in my asking questions. He asks my opinion on my daughter’s health and genuinely seems pleased that I want to know more.

We had a bad experience however with the first Neurologist we met who would not budge from his ‘trains on tracks’ analogy on brain messaging.  He threw in a few choice ‘big words’ and looked visibly shocked when my husband and I (with 5 University degrees between us) politely corrected his grammar!

We have since found a much more human down to earth ‘Brain Guy’ who like our ‘Hip Guy’ was a pleasure to talk to and understood that as parents we want to know as much as possible about our daughter’s condition so that we can try our best to support and help her. 

If a consultant’s reluctance to let go of too much of their knowledge is a problem, that pales into insignificance compared to their apparent appetite for a subject not in their specialism, namely Genetics. 

The whole medical world and his wife wants to dip their toes into Genetics – perhaps because being one of the newest sciences there is still much to learn. Or perhaps it’s because it’s a little bit more interesting and allusive than some of the other subjects on our list.  If I had a pound for every time I had been asked by a Consultant about Lucy’s specific genetic diagnosis, I’d be pretty rich. 

It could possibly be excused if the information had a link to what they are concerned with, but often as not they have never heard the term ‘Unbalanced Translocation’ and when I continue to spill the beans on what I have learned, I invariably get asked “do you have a medical qualification?” –  Ah that question again, does common sense and everyday experience of looking after a child with complex medical needs gain me a qualification? 

If so can we now have an equal conversation? Pass, next question please ...

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