Nice Work if You Can Get It…

You could say I have my finger in a lot of pies. That I’m a jack of trades. A multitasker somewhat.

If you were to ask me “what do you do?” I would most likely reel off my job title first. That hasn’t changed, but of course I ‘do’ a lot. That isn’t meant in any way to flatter myself, or to position myself with any kind of superiority. I am just mere modern woman. A mother in modern times, in a place where the economy has failed to meet the promises of my childhood, and out of necessity I work.

But more than necessity, an education was encouraged. And I’ve worked hard. And. Shock Horror. I love working. Maybe not every minute of every day, but, for me it provides wholesome balance. And whilst we’ve got a system in place that supports it, and a child who’s current condition allows it, I relish it.

I am a working mother. Three words that can simultaneously be a fact, a compliment, a surprise and an insult. A working mother of a disabled child? Are we really so rare?

There was a protracted period post RD’s birth where I couldn’t even contemplate, or comprehend how it would ever be possible to work again. But we’ve got there as a family. Emphasis on the family part- without Wolf being booted pretty hard by the economy crisis in the late noughties, and without his workhorse attitude to caring for his children, I’m not sure how this would be playing out. We make it work, somehow. I occupy the 1950s male breadwinning position, he has his ‘little job’ and earns his housekeeping. *disclaimer: this is said in absolute jest*

I said Work Horse!

I said workHorse!

But what I want to focus on is not the whys and wherefores of how currently we pay the bills, as I am linking into some far superior and intelligent blogs drilling down into the inconsistencies of services surrounding supporting a mother of a disabled child to work. What I want to add to this is how, of late my ability to be a good mother, when working has been pulled into sharp focus.

Quite often I forget that I am a mother of a disabled child. A child with additional, or special, or just plain and simple needs. No rose tinted spectacles, it’s just you do what you do, you know what you know. And I have a boy and a girl. They are both my world, both mine and Wolf’s world. They are incomparable, and yet, undivided by their differences. They require a different tack, both of which we have moments of glory and failure with. But we do our best, and I reckon that’s ok. They have shown me what true multitasking requires, and that’s not just an ability to forget lots of important stuff so think you have time for a sit down and a brew. That’s just sometimes.

Definitely don't need an alarm clock any more

Alarm clocks not required.

At work, I feel emboldened by what becoming a mother has given me. I feel more confident in myself, in my abilities. I have patience and yet an ability to drill down, and get rid of the unnecessary. I have to be more creative with my time. I have to always have a back up, a contingency. I often wish I could be in three different places at once. I am incredibly grateful for all the people that are those other mes- my Mum, my husband. The latter who is long suffering to the head full of questions and information I throw at him as I run out of the door, toast in mouth.

And yet, despite this, I have not been so monumentally floored or mortified by an event that occurred a few weeks ago. My ability to ‘cope’ was questioned. My child’s ‘presentation’ scrutinised. My role as a ‘working mother’ patronised. To tell this tale, I don’t wish to name and shame. Yet, I can’t talk to it without some context, but suffice to say, it has been dealt with (said like a mafiosa). With less bloodshed. We have uncovered that it was a “we come in peace” supposedly supportive meeting. And I have accepted the support. And we have moved on. But, here’s how it went.

RD had been unwell at school. I had received a call, they were going to bring him home. Could we both be there? Worry. I’m already calculating the impact of another hospital stay. What appointments I have in, the size of my To Do list. I rush home, we await his safe return. There had been some odd mention of ‘presentation’ on the phone, but this is used 15 ways from Sunday in our lives. His presentation on arrival in A&E. Upon discharge. Of various parts of his body. His features. I had no idea.

He arrived home with a dry mouth. A cuddle, a drink and his favourite toys and he calmed down. I thought that was it. Thankyou very much for bringing him home. But, there was more. He’d been a little more unsettled at school of late. Since when? Since Christmas. We were in February. Worry. Upset. My gorgeous boy, unhappy. And yet, there was more. There were concerns over Rufus’s presentation. That word again. Like what? I don’t understand. Well, he’d arrived at school with a dirty face. Once. With a wet nappy. Once. With a sore bottom. Once. With a dirty vest. Once.

Pause

Concerned face

“Are you coping?”

The tears are falling. How do I attract these kind of meetings? I have never been so insulted by others as I have since having Rufus. I want them to leave, and yet can’t ask them for that. I can’t bear the injury, that someone thinks I don’t take the very best care of my children. You see, it was aimed at me. The mother. That’s the assumption. Head tilt. “We know how hard it is to be a working mother.”

I managed to tell them I was confused. That he leaves my house well, and then, he spends an hour on a bus. At three years old. I’ve told him to hold it in. To not wipe his snotty nose with fluffy sweatshirt sleeves. To quit it with his cyclical diarrheoa. I cursed Wolf in my head for the dirty vest (misdirected anger anyone?)

Initially, I wept and grieved as only a mother could. But then, I pulled it together, arranged a meeting, parked my emotions at the door and calmly explained my well thought reasoning as to why I felt the approach and relay of the above information was so poor. As only a mother of a disabled child could. The fact that I work had nothing to do with my approach to that meeting.

Yes, work has allowed me to build negotiation skills. An ability to charm and subtly direct. To find the core of the argument. But my life with Rufus has truly tested these skills. Strengthened them. I feel that all this multitasking has paid off and suddenly being a WMOADC is a long badge I wear with pride. I could climb Everest if I put my heart to it (did I ever mention life with a disabled child also involves whooshing highs and lows??). I am very grateful for it.

Yep, someone has to do it...

Yep, someone has to do it…

At work, my personal life is my personal life. Some know of it, but mostly it’s just a part of me. I am judged and reviewed based upon my work there. I am rewarded. I have a name. I can tell of as much or as little as necessary. As a mother, as RD’s mother, that is my name. Rufus’s Mum. I have to fill in lots of forms that tell people what else I do. How many children I have. I am judged as a care provider. I am judged that I’m not the main care provider. I have to open my whole life up. And I am occasionally rewarded by others.

It’s a tough job, but someone’s got to do it.

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3 Comments

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3 responses to “Nice Work if You Can Get It…

  1. downssideup

    Oh my, darling what a powerful post. As I read my chest tightened. I felt it all as I read. All our children are less than pristine at times, all our children behave less than perfectly at times, yet is nly those with 1-1 support that get the phone calls and the scrutiny. Thank you for linking to Britmums.

  2. Pingback: Working with a disabled child | SWAN UK

  3. Pingback: Bring Me Sonshine | areyoukiddingney?

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