This image is pretty much everywhere nowadays. I first saw it as a print (in an expensive shop) and loved it! One of those short, sharp statements that are just perfect for certain situations. I know everyone can identify with it but I have to highlight again my special needs mums (we need a name, I can’t keep typing that!). You would not believe how many times we find ourselves in situations where if it is not our ‘special’ child it is an annoying doctor, civil servant, (yes I’m going to include her) school nurse, disability advisor or wheelchair engineer who has chosen to be in their profession yet does not seem to want to actually do the job. I often find that something I’m not too sure about is taken up by someone for me who will then get another person to ring me to discuss what I need to know. They ring to say they need more time to find out the details and haven’t forgotton you (if you’re lucky), and then ring back to tell you a) what you asked, plus b) clarify why you need to know, plus c) minimal information which basically repeats what they said for a) & b) and then suggest that you contact citizens advice or some other superior office?! You put the phone down and think to yourself ” Someone out there is getting paid for repeating back to me what I already know and referring me somewhere else!” It’s then that you want to bang your head against the brick wall so to speak.
I mean a school nurse who seems to have a desire to run a Weight Watchers or Slimming World Club rather than nurse – seriously. When attending these as I have over the years people often hit a plateau or put on a little even if they’ve been good (I know I know) and the consultant suggests things and tries to help. So we had a situation where obviously Cameron needed to gain weight and has practically doubled his weight (without any help from her I might add). Yet having lost a few pounds (well 2kg) actually from Jan to May it’s a big issue! Why? Why can’t he perhaps be just stablishing his weight – that’s a pound a month which is negligible and he’s growing taller. Even the Dietician has said they don’t always expect a growing child to put on. If they are getting taller, staying the same is as good as a gain. How many times should I point out to the nurse that the weight chart she is holding is for mainstream kids and it’s based on averages. Cameron is not average in anything why should his weight be any different. I mean does she seriously believe that his weight should be that of a ‘normal’ 16 year old boy? When he is blind and bound (not literally you understand) to a wheelchair. He isn’t tempted all the time by things as we are and if he was he couldn’t go and get them anyway. A few years back she even tried to compare him to Ollie as a teenager, what he did and what he ate. Hello! She doesn’t know Ollie. How does she know what he did or didn’t eat. She is using generalisations about both my children who are so very different which just reaffirms my thoughts that she knows absolutely NOTHING about children especially special needs children.
An OT who is as much use as a chocolate teapot. We have been chasing for Cameron’s bed to be looked at – he appears to be sleeping downhill as the bed is slanting downwards one end. Told her ages ago. Chased it this week. She rings up to see what is wrong with the bed so she can tell the engineers. “Tell them it’s the same problem as before because nobody has been out to fix it yet!” D’oh!
The list could go on as many people who have heard them already will confirm but for now I will do what I always do and …
KEEP CALM AND CARRY ON.
Lots of Love x
Julie Noted 