I have had a couple of weeks of things breaking down.
Break Down #1 – The Washing Machine
The kids hadn’t gone back to school yet and my washing machine decided the best way to clean our clothes was to boil them.
I was merrily busying myself in the kitchen when I noticed heat emanating from the washing machine. Touching the glass confirmed my suspicions and when I opened the door my kitchen started looking like a Dr Who set. Steam began streaming out and rushing straight to the ceiling. I had to use a pair of tongs to remove our hot clothes whilst spending the next hour trying to extract the boiling water.
A very kind man came the next day and examined the damage. Unfortunately it wasn’t the thermostat, a relatively easy part to fix. He concluded the motherboard was broken. Using lingo of the Starship Enterprise he explained a motherboard was essential to the working of the machine and cost √Ç¬£300 to replace. From this little exercise I concluded that washing machines are a lot like families. When the mother-board breaks down it is costly to replace.
I won’t take the analogy any further as I then bought a replacement washing machine. No replacement Mothers please.
Break Down #2 – Sam’s Toilet seat
A couple of days ago Sam was excitedly kicking and arching on his chair when the side adjuster sheared off. He was flung backwards and given the shock of his life. A few emails, photos, examinations by specialists concluded that it’s bust (I could have told you that). So now we have an unsafe toilet seat and an undetermined amount of time until we get it fixed or replaced.
Break Down #3 – Sam’s Milk Pump
Break-down number three happened only yesterday. I was about to add milk to Sam’s pump for his tea when I realised there was over 250ml excess left in the machine. His class teachers had been concerned he had moaned all day and not gone to the loo much. Now I knew why. He had not been given over a quarter of his daily feed.
Because of his reflux I wasn’t able to give him all of his missed feed so he probably went to sleep a little hungry. Amazingly the company sent out a new pump and it arrived at 7.30am this morning.
The service we got from the feeding company was great, although I’m not convinced the quality of their product is up to much. The difference between these break-downs highlights a stress I believe is felt by many parents of kids with complex needs.
So much is out of my control
So many aspects of my child’s life is completely dependent upon the service and systems of other professionals . Some days I spend as much time on the telephone, writing emails, arguing our case and fighting Sam’s corner than actually caring for Sam. It can feel like a constant struggle.
Not having control can be incredibly stressful and demoralising but it is further complicated because…
I can’t buy anything off the shelf for Sam.
My broken washing machine was an expensive inconvenience but I got to choose how and when I got it fixed. I bought a washing machine to suit our needs and budget. Much of Sam’s kit and equipment is adapted specifically for him. There is nothing bog standard about it.
And as for the cost? Well whatever you imagine it may cost add a zero to the end. His bed cost √Ç¬£2000, his trike √Ç¬£1200 and his Hippocampe over √Ç¬£3000. Having a son with such complex needs can be very expensive and require a lot of help from charities.
Sam’s life is complicated and out of my control and I can be left feeling drained and frustrated. It’s a constant juggling act with the balls supplied by someone else.
Understandably cost is a big factor when others are choosing the balls I spend my day throwing in the air and catching. But sometimes, just sometimes, I wish the ease with which I can juggle them could be a bigger factor.
Does this resonate with you? What stories do you have of people who have helped or hindered your juggling act?
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