We were well aware in spring the physical delays on both girls were going to be sticking around.
Their older sister grace who was 3 at the time weighed 18kgs, lifting her sometimes reminded me of the looming future decisions of moving and handling both of her younger siblings.
I would put them all to bed exhausted from lifting them in and out of cots, postural seating and specialist equipment all day.
Then in typical SEN mum style I would sit up at night googling solutions to these problems on the horizons, asking other families slightly further down the line and let’s just say the mix of responses sent me into pandemonium.
So I am going to tell you of my experience.
Here in the UK we have what they call a children’s loan store of specialist equipment.
Occupational therapists from health or social care can put requests in to order new equipment or send out something that’s already in stock from the Aladdin’s cave every county has one tucked away on an industrial estate.
I do wish they could offer families like ours guided tours of the loan store or a catalogue that I could thumb from front to back like I used to with the baby store catalogues.
I could at least mentally prepare for what is and isn’t available, maybe even leave me an order form like the Avon lady does to pick all these wonderful pieces of equipment.
Can you just imagine?
So I knew medical beds could go a lot higher than typical cots.
I had researched a few brands, the benefits and features on the beds I needed.
I casually mentioned it to our health OT to be told we don’t meet the criteria and to go speak to the social OT, as to whom also felt we didn’t meet the social care criteria for medical beds.
This went back and forth between both decisions before being escalated and resolved via line managers.
It took 6 months of this debate before the beds finally arrived, I hadn’t actually seen them before the delivery day so was a little apprehensive that we had made the right choice switching at such a young age.
The loan store sent out 2 delivery men to put the beds together in the room and show us how they went.
I had so many bittersweet emotions that day, all the excitement was evened out by the sombre mood of “medical hospital beds”.
As they called me into see them all set up ready to go my heart burst they were very homely, wood finish, bumpers in a decent colour.
So much higher for manual handling and overnight cares, the tilt in space function is just divine, instantly everyone is sleeping better.
We fitted the sleep systems across into the new beds and know these beds are going to last them for most of their childhood.
We have decorated the room and beds with sweet wall décor and cosy blankets, drawers tucked underneath the beds to store clothes away.
Suddenly those mixed feelings had gone I was now climbing up to peg the bunting on the wall like any other kids room.
Everyone that has seen the bedroom has been so complimentary.
It is now a bedtime sanctuary fit for a queen; we all cannot wait to go in there every evening to wind down.
My only regret… that I didn’t push for it sooner.
there is no point putting your head in the sand hoping these issues will go away or having an “I will just manage” attitude, everyone is happier in suitable equipment and now I am no longer sat panicking about the future, I am in control planning for every possible outcome come what may.
My next adaption mission… bathing and hoisting!