Tag: disability

Logistics Spaghetti

Large families come with a non-edible spaghetti-like organisation.

Last year we maintained 4 school diaries, Ashley’s medical appointments, Cerys’ medical appointments, Mum’s normal medical and dementia appointments, Mum’s home organisation and care team and Gill’s anxiety appointments.

The older girl’s are both at college (16+ and 18+) this year so more of their organisation is up to them. We still seem to be booking dentals and opticians though.

Fortunately for us, family is an organic process and will, with time, become less tangled.

I use a google calendar, there’s a whiteboard in the kitchen, letters on the fridge and as an indispensable last resort, Gill’s fantastic memory.

The girls contribute to the pen board – “if it ain’t on, we don’t know” is our maxim.

Add to this the normal day-to-day which includes repair and maintenance men for Ashley’s equipment and for the household machines, constant Amazon deliveries, school trip and uniform payments (all electronic now), food deliveries (I’m not going shopping!) and Lord knows what else.

As a list it’s long and scary but in reality it works.

Just.

Parenting a disabled child

My son, Ashley, has a list of disabilities. ┬áReaders from my old blog will be familiar with the problems we’ve encountered and the challenges we’ve overcome.

Folk have asked how we cope: how we accommodate his medication, therapies, appointments, finances etc.

They’re also curious to find out about the “disappointment” of having a disabled kid: how we mourn for the child and man that could have been; how we feel when we compare him to his able peers.

They’re a curious bunch.

The short answer is based on perspective.

Basically, it’s “what else is there?”

He’s 11 now, soon to be twelve, so we’re not Newbies.

Much of the day to day stuff is simply routine and with three other kids and an elderly Mum we rarely sit and ponder our lot in life.

Gill and I communicate. These aren’t just words. When it comes to Ashley, everything is shared. Decisions are rarely made without a conversation, even if it’s by text.

This gives us a lot of strength and stability when it comes to trusting the other partner.

Mostly we see things coming. We know the creams that don’t work. We know how to deal with lazy or arrogant consultants or their registrars.

More importantly we know him. His behaviour is transparent to us so if he’s ill we know it.

The other important aspect of our lives is the family. The world no longer revolves around him as it did when we were first dealing with his conditions.

The fun that is six people in a house all with different characters doesn’t leave time to dwell on one person too much.

Our best coping strategy is Ashley himself. His a charmer, a cuddler, a cool DJ, a smooth dancer and has an infectious laugh.

This isn’t a blog about living with disability. Some bloggers seem to dwell on this.

We blog about what we know and this family is only partly about disability, so the blog reflects this.

I look forward to your comments.

A New Blog

Okay, welcome to the new blog.

My old one with almost the same name had to be locked for personal reasons.

This one will definitely carry on in the same vein for as long as I have stuff to post.

To the uninitiated, I have been blogging for over thirteen years, initially on 20six then on various platforms, some of which died and some of which were just boring.

I settled here a few years ago and built up a nice hit rate of 200 a month, making friends as I went along and letting people into the nonsense of our lives.

In summary, I am a 50+ Dad of 4, happily married to my Gill.

The kids range from 18 to 9 and Ashley, whose 11, is profoundly disabled. I’ll do a tab for him soon.

We live near Manchester in England and like it. Even the rainy days.

As for posting, I will rant and whine a bit but I really do treasure your input.

Not sure how I can drag my buddies over here but I hope they all make it.

Right, better get on with setting up.