Nobody said that parenting a kid with a disability would be easy.
It’s cliche but true.
But what is hard is the sense that we all get that the big instituions are trying to take over his care.
The Medical Profession is the biggest offender in our eyes.
Whilst their conversation is dripping with sympathy, empathy and understanding, often we walk away feeling we’ve been badgered into a decision.
When he was tiny we would visit several distant hospitals to attend consultant’s clinics.
These would rarely be taken by the big honcho themselves. More often it was a minion, a wannabe.
Once we went for results and the guy was totally unprepared.
I waited for the end of the session when he finished taking yet another history (It’s all on file Gonzo) before tearing him a new hole. He actually had the gall to turn up with nothing more than a blank piece of paper.
I expect he still hears my well chosen words in his dreams.
It wasn’t nice.
Just lately we’ve wrested control from the behemoths and make a damned scary team ourselves.
Today, we’ve felt a little this way again.
We’ve requested a tablet alternative to his meds and been granted it.
We told school who administer the daytime dose who then asked for a GP’s letter for the files.
Our doctor’s surgery has asked why?
Talking it over we realised what nonsense this is.
We will send the last of the liquid in and when it runs out they won’t get any more.
The tablet can be given in the morning by us.
I understand that they need a prescription on the bottle and a form filled in by us for medicines.
That’s standard.
But when we stop giving him a medicine they only need to be told.
