I went back to work recently after having some time off sick at the end of the summer. I had an infected ear as a result of Dylan’s attempts to remove it and stress-related symptoms which made it hard to concentrate. Previously I’d managed the demands of being a carer alongside a full time job but last month I knew I had reached my limit. I had never had a sick note before: what do I do with this? I asked my General Practitioner.
I’ve almost caught up at work. It helps that Dylan has been generally calmer in the last few weeks; although there have been occasions when he has become distressed, I’ve managed to head off potential incidents. Being able to predict the signs, and having some strategies for settling Dylan, help me feel more confident. I wouldn’t say things are alright, but I’m treading water not drowning.
The cost of adjustments
Dylan may be calmer due to some of the changes I’ve made in his care. One intervention which seems to have made a difference is removing high-sugar foods from Dylan’s diet (I have written about this here and here). This change has come at a cost, however, as implementing it sensitively has meant the removal of some of Dylan’s favourite routines.
Dylan was in the habit, for example, of going to Costa for a piece of millionaire’s shortbread following a weekly trip to the library. Because this routine was embedded, in order for Dylan not to have the cake I have had to remove the library visit from his schedule. Another activity which has had to stop, at least for the moment, is the cinema. When I first started taking Dylan to the cinema I used sweets as rewards for appropriate behaviour; as the habit of buying sweets continued, if I don’t want Dylan to have them (because sugar seems to trigger aggressive behaviour) it means no cinema visits either.
As well as changing Dylan’s routines I have had to adjust the way he accesses the community. While previously I would take Dylan most places, providing I had a back-up plan, there are now some activities I wouldn’t attempt alone. My new risk assessment has to involve a consideration of how I would protect Dylan and myself, as well as members of the public, if Dylan became distressed. Because of the changes in Dylan’s behaviour he now receives 2:1 support in respite care and has access to a team of staff at his day centre; quite simply I can’t provide this level of support at home.
There is no doubt that this has reduced Dylan’s quality of life. I do still take some risks – Dylan is an active young man and weekends would be impossible if we never went out – but mostly these have paid off, thankfully. A few weeks ago for example, at the height of a crisis, I took Dylan tandem cycling: I figured once he was in the saddle he would put his energy into pedalling. We made it up the hills quicker than usual that day.
The adjustments to Dylan’s care carry a cost for me too. While looking after Dylan used to be relatively low key it now requires my constant focus. Evenings and weekends are no longer a rest from work but rather my busiest times. I have always regarded caring a full-time responsibility but since June it’s felt like a full time job.
Fortunately, as it turned out, I’d negotiated a reduction in my working hours before the changes in Dylan emerged. It wasn’t that I had a crystal ball and had foreseen that home life would become challenging; I requested reduced hours because the education provision I had spent a year fighting for was due to start in September (you can read more about this here and here). While I was delighted that my effort to secure this had paid off, the discovery that Dylan’s day would end at 3pm presented me with a problem.
Dylan was accessing education provision one day a week as an interim measure, so I had already had a taste of how difficult things would become for me after the summer. The situation reminded me of primary school years; when my children were young the lack of fit between the end of the school day at 3.30 and the end of the working day at 5.30 was a constant source of stress. After my marriage broke down, this exacerbated; as a single parent I was dependent on after school club for my daughter and on my mother or a childminder for Dylan. The situation eased as the children moved to secondary school; although never easy, their end-of-days became later and more manageable. Now, it seemed, Dylan would revert to primary time.
While it’s hard to find satisfactory childcare for an autistic child it is almost impossible to find for a ‘high need’ autistic adult, especially for a handful of hours on the edge of a city. With Dylan’s education provision set to increase from September I knew I had to find a more reliable solution to my end of day problem. The only answer I could come up with was me: I would have to reduce my hours, work shorter days and collect Dylan myself.
The cost of flexibility
Parents of disabled children and adults have been entitled to request flexible working patterns (part-time working, compressed hours or working from home) under employment legislation for some time. A 2013 survey of working parents of disabled children (conducted by Working Families & Mumsnet) reported that the most important factor keeping respondents in employment was flexible working (36.5%) and an understanding employer (21.2%). My employer has, over the years, made it possible for me to continue to work full-time by accommodating my requests to work flexibly. My classes, for example, are not timetabled until 10am, giving me leeway in case Dylan’s transport is running late. It isn’t easy – I’m often running at high speed between places and I never take a lunch break – but I manage.
From June 30th this year the right to request flexible working was extended to all employees with 26 weeks of service with an employer. Employers have always had the right to refuse a request to work flexibly if they can demonstrate an adverse impact on business. Multiple requests for flexible working could potentially increase their ability to claim this; if everyone started teaching at 10am there would be an awful lot of empty classrooms in the early morning. It will be interesting to see how the extension of the right to request flexible working impacts on requests granted to employees with caring responsibilities.
The guidance which has been issued to employers includes suggestions about what to do if several employees request the same thing. As ever, the distinction between what an employer is required to do and what they are encouraged to do is critical; there are more ‘shoulds’ than ‘musts’ in the revised legislation. Bearing this in mind, I’m happy with the agreement I secured of a temporary one year reduction in my contracted hours.
The fifth day
I had an email from a parent last week asking whether I could update her on the education provision I’d been involved with setting up. She had heard it was open – was this true? And had it kept its original purpose to provide for ‘high need’ adults? By the way, she hadn’t seen me and Dylan at the inclusive cinema screenings recently – she hoped we were alright?
The email brought home to me how much had changed and how quickly. I replied that the new provision was indeed open but that changes in Dylan’s needs and funding meant it was no longer appropriate for him. Of course I don’t begrudge another young person taking up the place which Dylan might have had but I feel sad that he won’t access the provision I lobbied so hard for.
So, as it turns out, I don’t need to pick Dylan up at 3pm after all. For the moment, he is attending his day centre (which operates longer hours) five days a week. It has occurred to me that Dylan may be calmer at the moment partly because of this; when Dylan left school I requested a full time placement, arguing this would provide the routine he needs. Perhaps, had a five day placement been approved for Dylan then, we might not be where we are now.
Well I’ve learned not to dwell on ifs; given that we are where we are, I’m glad for my fifth day. It helps to be able to leave work early enough to have a break before Dylan arrives home from his day centre. The time is also invaluable for doing the chores I can no longer manage at weekends; Dylan used to enjoy shopping with me but with so many of his favourite foods off the menu, and his behaviour unpredictable, this isn’t an option anymore. The fifth day, I’m discovering, helps me tread water.
A reasonable sacrifice
It must have been on a day off that I caught an item on the TV news about downshifting to a four day week, or while I was off sick perhaps. Two young researchers (themselves part-time) were being interviewed about a report they’d authored expounding the benefits of 0.8 employment contracts. Naturally I listened in. All seemed to be going sweetly until the interviewer asked the million dollar (or rather 20%) question: how many people did they imagine could take such a hit to their pay?
There is no getting away from the impact on disposal income; not everyone could sacrifice a fifth of their income or make good the loss from a savings pot. So while it’s great that we have the right to work flexibly, it does come at a cost (and one which is often borne by women). Ironically those most in need of flexible working may be least able to sacrifice income: if you’re on your own no one else is going to pay the mortgage or build your pension. While I’ve never regretted leaving my marriage I am continually struck by how hard it is to bring up a disabled child alone. Two’s certainly better than one if you can keep it together.
There’s a storyline in the BBC Radio Serial The Archers at the moment which involves independent entrepreneur Debbie Archer giving up work to look after her child. Actually it’s not clear whether she’s staying home on account of the child (who she has brought up on her own so far) or the new man in her life. Debbie’s mum Pat, an activist and Greenham Common veteran, is troubled by her daughter’s decision. Listening to Pat bewailing the death of feminism the other evening I almost capitulated on my decision to cut back my hours; income, I realised, isn’t the only thing I stand to lose. Still, I can understand where Debbie’s coming from. Mothering. Caring. These are important. They make a contribution to society and to the lives of those we love. Dylan is calmer now. I have more space in my week to support him and to ease his transition to what lies ahead. It’s a reasonable sacrifice.
The photographs were taken by me except for the roller coaster (a gift from a friend, original source unknown). I took the photos of the steel helter skelter at the Electric Works, an office building in the city where I live. I attended a conference there last year on women in the workplace so the photos seemed appropriate. I loved that office workers were using the helter skelter instead of the stairs; I watched people on the top floor casually taking a sack from the pile and, sandwiches in hand, sliding out of the building for their lunch break. A perk worth working full time for perhaps :-)
The Working Families ‘Working On Campaign’ aims to:
- raise awareness of the difficulties faced by parents of disabled children who seek to combine work and care;
- encourage change in childcare provision and employment practices to enable parents of disabled children to remain in work;
- change attitudes so that it is recognised that parents of disabled children can work but need support to remain in employment.
- Information about flexible working can be found at www.workgingfamilies.org.uk
- A statutory request form can be downloaded from: http://www.gov.uk/flexible-working/making-a-statutory-application
- Issues 38 (winter 2013/14) and 39 (Spring 2014) of the waving not drowning newsletter (for carers and parents of disabled children who work or wish to work) contain useful policy summaries and guidance. The data from the 2013 survey are cited in Issue 38.