This week I learned a valuable lesson. It’s one I thought I already knew, but events made me realise I wasn’t practising what I preach. Parents, especially of children with special needs, will know that if your child is in need of something that you are reliant on others to provide, you often need to shout louder than you ever knew possible to make it happen.
You will have seen from my last post about our visit from the Occupational Therapist that I was expecting we might get some help with equipment for Orange, now that he is rapidly approaching toddlerhood, in size, if not in capability. But no help was offered. A long, sighing story unfolded about how difficult it is to get equipment provided for small children with special needs. Apparently if you are under the age of two you don’t count. It is a political minefield of labyrinthine scale and it seemed like The Professionals just couldn’t really be bothered.
But a welcome fresh breath of air was blown into the midst when we met Orange’s new community paediatrician, Dr L, on Tuesday. I realised, as she asked questions and probed into Orange’s history, that I was on stilted repeat like a scratched record as I found myself continually responding “well we were hoping for help with this, but it didn’t really happen” as politely as I could, while quietly seething inside at the realisation that, actually, we have been getting very little support for Orange.
Dr L soon stopped me. “You must ask if you feel you aren’t getting what you need. Don’t be afraid to question, to request, to ask again if you think you need more support. You have a right to do so”. And as soon as those words left her mouth, I realised I have been too reticent to question the status quo, even with my flurry of kick-assing a few weeks ago. So, we don’t fit neatly into many tick-boxes…but that sure as hell doesn’t mean we don’t deserve support.
Within 24 hours of our appointment with Dr L, I had the Occupational Therapist back on the phone. An honest and frank twenty minutes later, and we are on our way to being provided with a bath seat for Orange. She also helped me to figure out what kind of car seat we need next, and where to go to get it. And on Monday we are off to see the Orthotist at the White Lodge Centre to get Orange fitted for a set of leg gaiters to help him with his standing.
I also learned, from Dr L, that whenever Orange has an appointment, we have a right to request to see the lead consultant. There have been too many times when we have been fobbed off with a less than competent registrar, namely his last opthalmic appointment, which involved a stressful three hours in the car for nothing much at all. So with the next round of Orange appointments, I shall be speaking up in my bravest voice and requesting to see the consultant. No doubt we will pay for it with interminable waiting times and weary sighs from behind reception desks, but I am armed now with a new sense of direction and confidence to say “my child has complex needs, please arrange for us to see the lead consultant”.
Gradually I am learning the lingo, and the means to negotiate the NHS system to provide Orange with what he needs. Really, it requires the entirety of my brain capacity to manage it at times, the tenacity of a bulldog (which I certainly am not) and the patience of a saint (yes, this one’s a struggle too). One day, I may write a book 😉