It’s a lonely ol’ life sometimes.
Between near constant phone calls to agencies, doctors, social care and nursing teams and the rest, its not really occurred to me just how little I’ve actually seen of other PEOPLE this week. Sure, I’ve spoken to a lot of them (shouted at a few) but not actually SEEN anyone other than my husband and son. Even at work. And despite what people say, the majority of people we interact with in our working and personal lives outside of special needs really don’t have a clue what life is actually like for us.
The very people who wax lyrical about how they want to help, and that we just have to let them know what they can do to make life easier are usually the ones who put the obstacles in our path. The trouble is, they just don’t get it. They aren’t being malicious, it’s just that they have no clue.
For example, yesterday I found out that Sams school holidays are 7.5 weeks long this summer…. 7.5 WEEKS. I have absolutely no idea what we’re going to do to ensure he’s cared for and safe during that time. And yet somehow we have to carry on working because through no fault of our own we’ve had to use all our annual leave allocation up already due to hospital appointments etc.
At our most recent meeting our lovely nurses and social worker were shocked that we’ve had to use our holiday allowance to cover hospital appointments etc; no-ones forced us to do that though, but we don’t have a choice as taking unpaid leave isn’t an option.
It is becoming increasingly difficult to juggle life and work.
Outsiders to this life do not understand what an impact special needs has on the whole family, and that needs to change. We cannot just ‘switch off’ and leave our home worries at home – they are part of us and come with us wherever we go.
Having family support makes a phenomenal difference, all too often however that support is not there, or is there on a ‘we only want the fun parts of seeing the child, not the difficult bits’ basis. Sorry, my son has severe epilepsy. The seizures, medications and therapies kind of come together with him as part of the package. Sadly. It breaks me that he has this battle to fight, and it makes it so much worse when I’m having to battle for even basic carers support and rights wherever we go.
I love working, I love my job, but I’m being torn into pieces trying to split myself so many ways.
This morning our social worker called with some good news – our direct payments are being restarted to allow us agency care over the holidays. It’s only 8 hours but it’s going to be a lifeline. We are lucky to have a social worker who fights and fights hard for us.
We are also incredibly lucky to have supportive employers… And the difference it makes to us is phenomenal.
It means we can carry on being parents AND feel useful. Not everyone enjoys their job, I’m lucky that I do so for me it’s a form of respite.
And it is good for Sam to be able to get to know other people and learn that he can have fun without Mum and Dad there, just like any other child.
So for now it’s time for a coffee and a deep breath before the next battle starts.