Dealing with Disability is Fine: It's the phonecalls that shit me!

Peopel who don't know you gasp and think life must be unbearably dificult, draining, and emotionally tough when you have a child with a disability - but to be honest, it's the endless phonecalls, wrangling and organisation that can shit me to tears. Picking up Miz M from childcare yesterday, where she beamed delightedly and kicked her little legs and waved her arms, that was lovely. Trying to help her eat slices of mango was sticky but, hey, just fine. Making the fourth phonecall to the same organisation to try to organise for her mobility device to be fixed, on the other hand, brought a hot flush of frustration to my face and tears of irritation to my eyes. Put on hold while the woman I needed to speak to was on another call, after which the original unhelpful phone-answerer got back to me and said oh, she's left now, and won't be back till tomorrow. This, at 9 am.

Or the woman from a (different) organisation who arranged a time for it to be repaired, without telling me I was supposed to come to the workship at a suburb somewhere-or-other. (My only other experience of having it fixed, technicians came to me.) And what do I do with Miz M while it's being fixed, lie her on the floor while Clancy runs around the workshop juggling screwdrivers?

And yes, I would like to buy that little hammock chair you sent me the quote on and that I emailed a response to and left a voicemail message and three messages with your colleagues about. Oh, really, I didn't get any of those messages.

And can you confirm that the referral has been received for the initial gastroenterologist appointment to assess my girl for a PEG, so we can stop doing the naso-gastric tube every morning? Yes, I'm the one who's been calling every week, and I know it's October, but the referral was supposed to be sent from July. OK, thank you, I'll call and hustle the paediatrician's office again, and send an email again, and I guess I'll speak to you again next week.

Oh my, it must be time to call the airline about our trip north: two different enquiries people (one in Hobart, one in Brisbane), and 4 phonecalls; "Special Handling" section (4 phonecalls and one email, with attachments); Civil Aviation Safety Authority (3 messages and missed calls, one very helpful phonecall). Don't ever lose the phone number of the people who were helpful; bookmark all the relevant websites; check and keep the rights and responsibilities.\

More letters and emails and attending one meeting with the head of the childcare centre about why the accessible gate hadn't been finished. More to do there.

Health care card, medical report, and physio report to the childcare for the Inclusion Support Agency to try to get more support for Miz M for next year.

Lordy lordy, I'm even boring myself here.

And to think it woud've been nice to add a poetic, reflective, funny (ha!), experiential, story with links, razzle-dazzle, a song and (why not) a recipe thrown in?

Oh, perhaps not.

So, it's not the emotional difficulties of having a child who has special needs, it's the logistics, the wrnagling, the organisation, the endless communications. And hey, I can do this stuff. Abe can do this stuff. It breaks your heart for people who can't. But allow me: it can still piss me off on days when ther emight be other things worth doing . . .

Hmmm, a whinging post, not really my favourite kind. Note to self: must do better!

Comments

[Pen]

Tried to write a sensible response, but every time I thought about all the phone calls all I could generate was a kind of 'argh/urk' noise before my brain shut down and my system was flooded with fight or flight adrenalin.