Monday, 14 April 2014

professional parents {communication and disability}

As the parent of a severely disabled child I have learnt, over the years, how to get along with the professionals Smiler has brought into our lives.  I was the professional going into peoples homes for several years, and (to a certain extent) I know the system.  I know decisions aren't made overnight, I know how important it is to keep up to date phone numbers on file, and I know that (whether it's fair or not) if you treat the professionals with respect and don't let it get personal then you are more likely to get what you want.

Depending on the needs of your child and the system in the county (or indeed country) that you live, you might end up with stacks of professionals, or very few.  Smiler had, the last time I counted, nine medical consultants (three of who are surgeons) - actually ten consultants (always forget about the urologist!), four therapists, and a social worker.  And because I can't help but expand on that last one, he has a social worker who is with the Disabled Children's Team - it's not because there are any child protection concerns.  The individual personnel have changed occasionally over the years, with one of the longest lasting being the social worker (who I won't name here as I haven't asked permission), who we've had for five years.  Doesn't sound like long, but plenty of reviews and phonecalls and emails traded over those years meant it was a comfortable partnership - he knew I wouldn't leave a message saying it was urgent that I speak to him unless it really was, and I knew that he'd fight in our corner for anything he genuinely agreed that we needed, and if he didn't agree then he'd tell us that upfront (not that this ever happened).

And then last week we got a letter in the post, telling us he was moving on.  I was disappointed, but couldn't quite figure out why, until I was reading some background for a course I'm doing in a couple of weeks about expert parents*.  It explained how with children who have complex health conditions or other disabilities it is often a parent who notices when a problem is developing for the child, or who spots a link between different facets of a child's life - new meds causing irritability for example.  

As parents we strive to be as engaged as possible in our kids lives - we need to be - we are often their advocate, and the passion and enthusiasm that we bring to this role is a natural consequence of our relationship with our child.  

But we'll never be equal to the professionals.  Or maybe I should rephrase that - the professionals will never be equal to us.

They can walk away at the end of the day.  Even though our children may flit across their minds sometimes (as the vulnerable children that I worked with would sometimes flit across mine) they don't live it.  While they may be utterly sincere in their recognition of what can be, at times, an incredibly demanding situation, they cannot fully understand it because this is not their life.  Of course, that's true of every family, whether they have a disabled child or not, and we all know every child is unique, so every situation is too.

Professionals can move on.  Maybe to a different hospital, a different position, a different city - a completely different career even ... but that simply isn't an option for us.  They have a level of control and self determination that we handed over the day we held these babies in our arms, in our hearts.  Whether we would choose to change cities or positions or careers isn't the point - the point is, we don't have that choice.  Even those parents who choose to no longer parent that child - I find it difficult to imagine that they could move on, completely, and never let their mind drift back.

So, to Smiler's social worker, good luck with your new career.  Hopefully your replacement will slot into the space you leave without incident.  Because for all the power that these professionals hold, all the education, the training, the courses, the reading and the workshops they've done - the parents of the children and young people on their caseload are one of the most precious resources they have available to them.

~ ~ ~ ~ ~

*nope, not because I am an expert parent, nor am I likely to become one - it's a phrase being used in the world of parent carers to drive home the point that as far as our children are concerned, we have more expertise than the professionals do, and so should be recognised and treated as such.


  1. Beautifully put. The expertise of parents is often overlooked yet seldom wrong. Thanks for posting :-)

    1. Thank you - what a lovely compliment! I think things are starting to change, but I'm not sure if that's only for the parents who insist on being included - I'd imagine it's completely different for young parents, or those whose English or literacy skills are not very good. Fingers crossed this will improve!
      Thank you again for reading, and especially for commenting too!


If reading this has made you smile, or left you feeling sad; if you're fuming in anger, or shaking your head in disgust; if you'd like to share something, or just want to say hi, please do so here. Thank you.