We have always been working parents. I am a commuter, with a day at home a week to catch up on paperwork. My partner works predominantly at home now and is self employed.  Our ways of working have altered over the years of course, in line with our daughter’s changing needs and circumstances as she’s got older. We’ve had to balance our roles, flexibility being the watchword. It’s normal for us to have to stop and leave work behind for a while when things don’t go according to plan.

For my partner, time away from work is unpaid. It’s different for me. Thankfully my employers have generally been sensitive to sudden absences for emergency childcare, the need for extra working from home days when our girl has not been well enough for day services and sofa days are required. Taking valuable special leave has also been an option but as a last resort. The annual allowance is limited.  Despite all this, we are in a perpetual state of catching up.

For both of us, working has been a necessity for many reasons. Like for most people, financial considerations are paramount. So are terms and conditions. As parents and carers though, it has also provided some kind of respite, albeit with pressures of a different kind. It’s a relief to have other things to focus on when life is so intense in our world. And it’s helpful to have space and distance from which to gain perspective.

My work at the end of a long train journey means I have extended days away from home and can switch off. Mostly. Not so for my partner who is always on call. Always within reach. When I’m half way home I switch gear and look forward to getting home. My partner looks forward to getting out.

Our daughter now has home carers several days a week. While this is proving successful, there are challenges. Sometimes we just want to be quiet. And alone. Boundaries are inevitably blurred as our family life is open to view and paid carers come in and out, party to our movements, moods, lifestyle, ways of being with each other. We are still finding our feet and learning to manage this. It’s getting better.

As for our daughter, she is happy and confident with the regime as her team grows and she has the attention and support she deserves from a variety of people who take their work seriously and want to give her a good and meaningful life while she is in their charge. For them it’s a job with a start and end time, so many hours per week. We don’t lose sight of this. Nevertheless we all share pleasure and pride in her achievements, however small. Last week we all beamed at each other as we watched her bounce up and down on her gym ball, for the first time completely independently. The picture I grabbed of this momentous event is in pride of place on the fridge for all to see.

It’s the weekend. We’re in a specialist shop to buy an electronic device for our daughter. The salesperson is over enthusiastic in his chat and over ingratiating. He tells us that he knows a couple of people who have special needs and asks what our girl’s particular talents are as “they” always have them. “They” all have areas of “high functioning”, he says. He says one day “they” may find a cure for what she has and we should spare no expense in buying her a good product in case in future she can use it without our help. She wouldn’t want anything cheap.

He tells a colleague he has completed his pitch and we are buying the full package. He thinks we are not within earshot. Then he looks at our daughter and in front of her asks, “Is that your full time work?” I say without missing a beat, “No, I’m her parent.” Then we walk away, taking our business elsewhere.

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