Friends like these

Friday was a tough day - I eluded to it in my last post. Lots of poo related saga, minimal sleep, a broken car, a broken washing machine, a broken me, you get the idea…..

What tough ‘shitty’ days like this prove however (if you pardon the pun), is what lovely friends I have been fortunate enough to collect over the years. Without even asking, I had washing taken, I had the car battery fitted for free, I had two different friends take my other two children off my hands so I could sort Little I out, and I had someone willing to babysit my poo machine daughter, so hubby and I could get out in the evening. A lovely mental break! I don’t think I could ever articulate how much these gestures mean - particularly the offer to babysit - I’m well aware that my lovely daughter is a full hands-on evening experience!

Two days on and poo seems to be ‘under control’ - or at least as good as it gets! Little I remains extremely happy and we are currently enjoying very interactive singing sessions, where I sing (badly) and Little I rocks along with a big smile. This follows on from a fab live music event on Saturday, where Little I rocked it out to her heart’s content with her wonderful, wonderful carer - something we would be unable to do without 1:1 support for her.

Isla rocking it out at our local Music in the Park 

This takes me aptly onto one of our current battles. The pressure on Social Care budgets is a HUGE problem. Little I gets 8 hours per week for me to pay a carer. I’m extremely grateful for this, but to be honest, it’s far from enough when you have a child with no safety awareness, no sense of danger, no language, incontinence and so on. Sitting down to do homework with Daughter No 1 or bath my son etc are tasks that need my attention (let along cooking, cleaning, reading with the kids and so on and god forbid I might want to take them out for the day in the holidays…..), yet you can’t take your eyes of our whirling durbish, for as we recently discovered - she may be tucking into a balloon or some Hama beads, or whatever takes her fancy….. or if you’re out and about she will have wandered into a road if given 30 seconds….

Despite this, I have now been advised to expect these hours to be cut at our next review. I’m sadly not a unique case - this is happening to everyone. :o( I’m absolutely gutted, as these hours are the difference between us coping and not coping :o( I’ve been told I can appeal - but it’s yet more work and yet more ‘list everything your child can’t do, blah, blah, blah’ - so extremely depressing.

Anyway - this isn’t meant to be ‘poor me’, I guess I just want to highlight factors important to families like ours and maybe, just maybe my posts will reach someone in a position to step in and help one day…..

My biggest message here though is….. You can always be a great friend - even the tiniest offer of genuine help, whether it’s logistics (club lifts is a biggie for me!), a good listener, or you turn up with your cleaning gloves (I would never be offended by the way! ;o)), know that your gesture, big or small, will make a massive difference.

Love each other x