I sometimes hope (in my perpetual foolish optimism), that someone will maybe look at your personal situation and think to themselves "Hmm. I bet I can use my common sense here in order to make this person's already hectic life... just that little bit easier." Very rarely actually; this happens. But more often than not, I find myself overwhelmed with frustration and crying into my dinosaur mug.
Well, we've had a really bad few months. Amy's seizures have been out of control... and of course we are approaching chest infection season. Every attempt I have made at having a doctor's appointment for myself, a nice leisurely catch up with friends, or even just tackling the copious volumes of chores; has in fact been rendered a waste of time.
In favour usually of rushing to hospital, or indeed travelling there in an ambulance with a poorly Amy.
I've been so frazzled between medical interventions, hospital stays and sleep deprivation that I entirely overlooked the fact that Amy's blue badge had expired. Mortified I cleared my schedule at the next possible opportunity and set to getting it renewed.
It was of course not as straight forward as I had imagined. I needed to send proof of address, proof of high rate mobility, my favourite flavour of crisps, my least favourite sports player and so on.
I sent it off by recorded delivery, certain that I was not about to try and get all of this reprinted. I even hand wrote a courteous little note in the hope they would find me endearing and approve us immediately. WRONG.
A few weeks on and I receive a letter. The letter states that the proof of mobility was from 2017 and that they wanted something more recent. I re-read what I had sent them and the letter even stated "approved until 2022".
What more could they want? Blood!
The lady on the phone was very polite and understanding, however bound by policies, rules, regulations whatever. So, she told me to phone DWP and get a more recent letter to send to them. In my emotional state I ranted and cried down the phone that her cerebral palsy isn't going to just get better one day... and that I as a special needs parent already deal with enough silly issues and simply don't need this hassle.
She verbally nodded, agreed, and repeated herself. I admitted defeat, apologised, and sobbed my way over to get the number for DWP.
15 minutes on hold to DWP. I don't even like classical music. It seems to have the opposite effect on me to what is intended. By the time the man had answered I had finished my angrily worded complaint to the local blue badge people about how silly their process is.
After a pop quiz on all of my favourite facts about ourselves (address, various dates of births, sleep position, snack preferences etc) I am informed that the letter will arrive within 7-10 days. WHAT?
In this age of technology... of snapchat, of video calls, of virtual reality even... how on earth does it have to take this long? I don't understand why they can't just bob a quick email over for me to forward to the blue badge people.
The badge could be here by tomorrow never mind in a few weeks’ time.
Now I know it's my fault for forgetting to renew sooner, and I know that rules are there for a reason. I even get that the rules are there to protect people like us from people applying that actually don't qualify. But come on. Really.
This is just one example. I find my life to be seasoned with these little annoyances and complications. They never seem to work in our favour either. There are always unreturned calls/voicemails, letters to be sent recorded, more forms to fill... and my least favourite; the frantic foraging through our paperwork to find a specific document that proves one specific thing.
There is always one thing holding you up "Sorry Miss Brown, it would seem that the other hospital hasn’t granted us access to those records yet and I am yet to speak with our senior radiologist... we will try and find out and contact you next century".
I feel that families like ours need our own admin office, transport team, bookings department, clinics, and a PA. It's madness.
An example of things going right? So, I lost a part of Amy's Firefly GoTo seat. I've been meaning to sort it out for ages but it wasn't at the top of my list. So, I kept putting it off. I finally got around to emailing Firefly (who were patient with me at my failure to identify a product code/order date etc) and you know what? They posted out the part I needed THE SAME DAY no questions asked.
Why can't everywhere be that efficient and focused? Or even half as efficient.
Recently, during a wheelchair repair I enquired with the engineer "is it you guys that can sort out the footplate strap issues?" (Amy is a thrasher... she is very good at breaking Velcro straps) "No" the person responded.
I tried not to laugh into my cup.
I expected this response. "It's your local wheelchair services that'll look at that for you." to which I responded "ah okay, I will call them now whilst I remember." So, I called them knowing exactly what they would say. You know where this is going right? "Sorry no, that's not us, it's the guys that come out and do the repairs that will do that." "NO!!" I quickly asserted, somehow both shocked and not surprised at the same time.
"No. The engineer is here with me now... they explained that this is an upholstery issue and therefore not them". I then went into overdrive explaining the issue and how Amy is kicking people in shops and injuring everyone etc. Sounding almost defeated the girl replies "OK I will forward what you've said to one of our OTs and if they think you need a review we will send you an appointment in the post."
ARGHH!! I'm getting angry even retelling the story!!
It's all a fight... who can pass the buck... who will pay for that? Not us... let's send her from pillar to post calling round everywhere until one poor unfortunate person answers the call where mum can be deemed "unstable". Sigh. If THEY think you need an appointment. Lady, I'm telling you... we NEED an appointment.
I don't actively seek them out as a fun way to spend our day!! I don't enjoy Amy missing school, or fighting for what she needs to be safe and comfortable. Really, I don't. (For those desperate to know... they did actually send me an appointment... as did the radiologist... both for the same day this week!)
I get frustrated with myself for getting myself so upset over things like this. But the reality is they feature in almost every aspect of our child's lives and on top of that life has other challenges to deal with. I've got to the point where I dread reading the post or answering the phone... but at the same time I'm staring at the letterbox and my phone...
Waiting and hoping to hear the things I need to hear.
I want to hear "no problem leave that with me" and it actually be true. Sometimes it can ruin my day, other days it makes me do a sarcastic laugh and I will continue with my day; or even worse it can make me just ignore the problem and let it continue to get worse because I can't bear the emotional turmoil I will have to endure.
But the best thing to do, is take a deep breath. Count to ten. Remind yourself over and over again that this might not matter in a weeks’ time. And that eventually it will be okay and you're doing all you can.
And most importantly, think of that awesome little person that needs you to do this for them.
I'd love to hear others' stories of red tape, or a time where things went right for you!