Additional Needs
Losing Independence
There was a time not long ago when I could lift and manoeuvre Ethan around with no effort at all. I used to lift his wheelchair in and out of the boot and then transfer Ethan in and out of the car into his chair. I have been hoisting him at home for about 4 years now mainly to save my back and we have had our wheelchair accessible car for 2 years now as well. He got heavier and heavier especially over the past year!
Today is the 2nd time I've had to use a hoist whilst out at the hospital on my own. I usually just lift him for weighing or onto the bed for an examination, but I can't even do that now. Now I have to be that annoying person asking for hoist to be brought to us just so he can be weighed!
At the moment I'm having to do it alone.
Very few places we go are fully accessible. This includes some of the hospitals we visit. Only one of the four that we visit actually has suitable changing facilities at the moment. This is going to make it harder for me to go to hospitals alone, which at the moment I'm having to do it all alone. I've always done the majority of hospital appointments alone due to Ethan's dad and step dad working. I like to be independent and its becoming very clear that as Ethan gets older that this independence will disappear.
This is the reality!
I should be able to take my son out on my own and not worry about having to leave after a couple of hours when his pad changes. I shouldn't have to rely on others to help me lift him to meet his basic needs. He shouldn't have to stay in his chair for a whole day without a stretch because there's nothing to help him out of his chair. But this is the reality for us and families like us as our children get older.
It shouldn't be something we just have to accept, like everything else that comes with having a disabled child, especially in hospitals who treat our disabled children.
