Their kitchens alone are the stuff of legend – their last one had 49 drawers and cupboards in it! Bliss for anyone who loves to cook – which, ironically, they don’t.

They do love to entertain, though, and the delicious roast dinners we often have with all fourteen of us around the table… well, the big kitchen is definitely handy.

Next year, they’ll start building a new house– the last one, they say – this is the place they plan to retire in.

Over lunch with Mum last week, she casually mentioned that Dad has redesigned the ground floor of their house with Charlie’s longer-term needs in mind.

I was stunned: wider doorways, no step to the front porch, access to the pool etc.

These are things I hadn’t even considered, and when I said to Mum how lovely it was that Dad had thought to do it, she just shrugged and said, “It’s Charlie, of course we would, it’s not too hard to do when you’re starting from scratch.  It’s no big deal.”

Well, it’s a big deal to us.

Disability access: it’s something I’ve heard people talking about, of course.

I’ve sympathised with spokespeople on television or the radio when they’ve been talking about the limited access to sporting events or holiday destinations, schools or theme parks.

It’s always been a bit of background noise, though, because it’s never really struck a personal chord with me.

All that is changing now.

As Charlie gets older, the likelihood that she will become independently mobile decreases.

We are facing the very real possibility of a wheelchair-bound little girl.

At three and a half, Charlie is still pretty ‘movable’ – that is, we can lift her and carry her about.

As she gets bigger, this will obviously become an issue and we’re not prepared at all.  Our house is on a steep hill with an exceptionally steep driveway.

Doorways aren’t wide and the hall is quite slim as well.  We don’t have rails in the bathrooms or hoists in the bedroom.

We have a few steps – small ones as we’re in a single-storey, but enough to cause problems for wheelchairs.

So much to think about!  Just when I think we’re on top of it all (or as much as you can be in these situations), something else pops up and bites us.

We’ll not have Charlie unable to get around in her own home, so it’ll have to go ‘on the list’.

I still don’t know what we’re going to do long-term – except that we’ll need to find a more suitable place to live before long – but in the meantime it’s nice to know that Charlie will not only be welcome, but able at Mum and Dad’s place.

When we talk about ourselves, it’s to discuss our thoughts and feelings about our children, or to share tips or ask this wonderful community for help in overcoming the obstacles our children face.

We talk about siblings and partners and grandparents and friends, all in the context of our beautiful children.

And that’s great, because it demonstrates the depth of our love and care – right?

Whilst all of that is undoubtedly true, and our love and concern for our children knows no bounds, one could argue that this level of focus isn’t always healthy.

If we don’t take time out (like all parents must) for ourselves, for our partners/friends/parents/siblings etc…we will eventually burn out and won’t be any good to anyone.

The trouble is, the special needs of our special children are so pervasive that it’s hard to separate them from any other considerations.

This is my current dilemma.

I have just completed my MBA (hold for applause… thank you!), and it’s time to start thinking about what comes next for me.

Before Charlie was born, I held fairly senior management roles that involved lots of overtime and travel.

DH (Dear Husband) has a similarly demanding position.

With Charlie in the mix, there’s just no way that we can both sustain roles at that level without compromising the quality of her care, which we simply aren’t prepared to do.

My MBA was the middle ground we had been looking for.

I’d been meaning to upskill for years, and study gave me a great opportunity to be there for Charlie and still pursue some goals for myself.

Now that’s over, so…. What comes next?

This is a dilemma faced by most parents of young children.

The choice between working and staying at home, balancing the need to earn an income against the cost of quality child care… this isn’t new.

The difference is that neurotypical children reach an age where they become more independent, where systems like before and after school activity programs start to come into play, allowing us as parents to consider all of our newfound free time and what we’d like to do with it.

Charlie, on the other hand, is not gaining independence.

At least not in any way that would lessen her need for me.

Her physical needs are only increasing as she grows, and she is also outgrowing the child care options that we may have had in the past.

She will go on to ‘big school’ someday soon, but there’ll be no walking to school or to the bus stop for her, and likely no after school activities beyond therapies (for which I must of course be present).

Right now, the jobs I’m applying for are giving me feedback like “you’re overqualified”, or “the employer feels you’ll be looking for something more senior and doesn’t want to invest in a flight risk”.  Ouch.

So… here’s my far-too-honest letter to prospective employers:

Dear Sir/Madam,

I am an MBA graduate with ten years’ sales and marketing management experience looking for a new role.

I have been out of the workforce for six years whilst studying, caring for my young family, and specifically meeting the complex needs of my daughter, who has a life limiting disability.

I realise that the role on offer is perhaps a few steps below my previous positions, but let me assure you that this is a conscious choice on my part and that I don’t intend to ‘leave for something better as soon as I have the chance’.

I will be a valuable asset to your company and am prepared to embark upon a loyal two-way relationship of give and take (assuming that they still exist in the current climate).

What I can offer you:

Long term loyalty, reliability and flexibility, qualifications and experience beyond what is required for the role (or represented in the salary).

What I need from you:

Long term loyalty, reliability and flexibility, understanding and acceptance.

The downside:

There will be hospital and therapy appointments that I need to attend, and it’s possible that I may need extra carers’ leave from time to time.

I may ask for more flexible start and finish times because of child care issues, which are not so simple with a special needs child.

I may even have to leave the office with little notice, but probably no more than any other parent.

The upside:

Aside from my professional skills and experience, my personal circumstances have made me an expert multi tasker, a seasoned negotiator, an assertive advocate, a persistent goal-setter, and given me patience and perseverance beyond that of my younger self.

I am often working and online in the middle of the night and you can be assured that any shortfall in terms of effort or hours will always be made up by me.

I will be appreciative of your flexibility and understanding and you will see that reflected in my output.

…what do you think?

Any takers?