I should be doing housework. The place is a tip, piles of paperwork leaning precariously like some homage to Pisa. Various prospectuses, job applications, CV’s, local authority letters, forms and reports, events which were must go see now already passed, hospital appointments and referrals, DWP letters with constant amended tax credit information, bank statements, audit trails and of course bills, always there are the bills. Some of it is mine, some Wonder Boy’s, some relating to my Dad. Most of it is in the dining room so despite my former rule of always eating at the table at mealtimes we’ve been eating off our laps for a fortnight. Yes, I am familiar with avoidance….
Having finally managed to muster the energy to shower – I’m becoming increasingly aware of my lack of va va voom not being helped by a 14 day cold which will not bugger off – I found myself performing the starring role in a fictional multi-disciplinary team (MDT) meeting about Wonder Boy’s future. I tore my ex-husband off a strip for not supporting me despite being a qualified social worker who is now a carer support worker helping parents just like me. I regretted all the times I ever said to someone ‘oh yes, we co-parent’ because it gives him credit where it isn’t due. I challenged the head of adult social care team – because they are easy to get to a meeting if it’s fictional – and demanded that he acknowledge that WB cannot be left home alone and to work out a realistic daily budget so that I could start negotiating with organisations who previously would have worked with you, but now don’t until they know you have some sort of sanctioned budget. I told the social worker who is supporting Wonder Boy – you know the one I asked to be part of the autism team, but in reality is part of the adult social care team, new to the area with no specific autism knowledge, no idea of the services available, how funding works or what the deadlines are, she’s nice but not what I need – to talk to WB on his own because I felt that I was hampering progress about decisions he should be making about his own future. WB knows I will make decisions, he knows I will act in his best interests, he knows I am usually right, he knows that I love him to the moon and back and as much as he thinks I’m a pain in the arse, he trusts my judgement. So when we go to look at a college or a service provision and he is asked what he thinks, he looks at me and says “Do I like it?” I need to be removed from this scenario so he can explore his own thoughts, painful as that is to do.
In my fictional MDT meeting I questioned the social worker about talking to WB for an hour on a walk then coming back to tell me that he wanted to do what I did – what train for 9 years to do something you are really passionate about only to find there are no jobs for you? I was hoping for more for him – no he wants to work from home like you do. He wants to work in IT as a web designer. I put it to her that WB has never really shown any interest in IT, he watches endless YouTube clips on his phone but that’s as close to IT as he gets as far as I’m aware, that I presumed web design required some sort of qualification which was beyond entry level 2, so, I put it to you m’Lord, that perhaps the social worker sowed the seed of an IT career because she has a perception that all people on the spectrum love IT, you know, because it’s geeky.
I also express my disappointment about WB’s teacher who has been my wing (wo)man in many a battle but has now gone strangely quiet in her support of future options for my gorgeous boy. Connexions weren’t present in my fictional meeting because I can’t even get them to return my calls in the far reaches of my imagination. Having felt empowered by my handling of this imaginary meeting I promptly burst into tears and stood sobbing from frustration, fear and uselessness.
Everything has a knock on effect and navigating your way through causes mind numbing weariness. I need to get a full time job because if I don’t I will lose my house. Subject to court order which stated I had two years to get a mortgage in my own right, that deadline is looming. Despite managing to pay my mortgage at times with NO income over the past four years my mortgage provider changes the goalposts every time I think I’m in a position to move on.
From the moment I stepped into this house I felt connected to it. It is the only home my daughters have known. I am not overly sentimental or spiritual but I believe this house looks out for us, it keeps us safe. WB lived in another house until he was three but what a move would do to his wellbeing is not something I care to dwell on. Despite living in other flats and houses, when I said ‘home’ I always meant my parents house where I grew up, but when I moved into this house that changed – this was *my home*. Therefore, keeping this house is vital. Whilst selling it would release my ex-husband from the mortgage, he does not hold an equity stake in the property and whilst that would leave me with a tidy sum it wouldn’t be enough to buy a house big enough for us to live in locally and I can’t get a mortgage so….. I’m stuck in a stupid loop. But if I can get a full time job I can get a mortgage – provided I have a contract with more than six months to run and earn a significant amount of money and pass all the other fucking stupid tests that the banks put up as a barrier to me paying for something that I am already clearly paying for. So I don’t just need a job, I need a good job.
In order to get a job I need to know that WB is well cared for. I headed out to London yesterday for an interview, half way through the journey I knew I couldn’t commute every day and not just because it would cost over £670 per month for the privilege to travel. I would be too far from home and would be unable to get back quickly enough when needed. Being able to get WB from school because he is having a bad day, being able to visit service providers, attend meetings, make calls to professionals, drop off forgotten kit, lunch, money, bus pass, being home when he is sick, being able to call him at school so he can talk through something vitally important like whether we can buy a new petrol mower, I need to be able to do these things on a fairly regular basis. What employer can understand and accommodate that? I can’t even quantify this. It’s not like every Wednesday I need to…. It’s haphazard and unpredictable but without this support WB would struggle to get through his days. Every day starts optimistically and adapts to whatever happens. When I drop dead of a heart attack you’ll know why. It’s a pretty stressful existence.
I have friends who are well intentioned and lovely but just so naïve to the constraints and barriers put up by the systems families like mine have to work within. Yes, in theory I can choose an out of county college for WB but in reality how will I get him there? There are NO TRANSPORT options other than ordinary community services which he cannot navigate independently. So I would have to take him – see earlier comment about needing a full time job. Hi I’m Jane I’ve come for the role of whatever you need. I’m hard working, conscientious, articulate, I’ll be a real asset to your organisation, just one thing I need to start at 10am and finish at 2.30pm to pick my son up but I’ll need full time wages. Yeah, that makes me instantly more employable, not.
Or there are the ‘we can get him a job’ brigade who offer the earth when you first talk to them only to concede on further questioning that they couldn’t possibly get WB a job he actually wants, that we all have to start at the bottom, that really the options are collecting trolleys in a supermarket or packing stuff in boxes in a warehouse, not for actual wages you understand but these guys are paid handsomely in experience. Yeah, because that pays the bills and puts food on the table doesn’t it. WB needs a job because he has ambitions to live independently and because if he is doing a job it’s morally right that he gets paid. These guys are not slave labour to be exploited under the guise of short term apprenticeship.
The professionals I speak to are all so full of ‘let’s get him a place here and then everything will be ok’. But I have been playing this game for long enough to know that we are a long way from everything being ok. This is just the start. Leaving school, going to college, getting a job – which he can hold down, learning how to travel independently, learning how to manage money, learning how to cook, living independently, finding a place in society, creating a supportive social network, that’s many years of work yet. So I don’t trust the professional optimism. I listen to others like WB, they paint a more honest account of college placements which have broken down, placements that were almost impossible to get out from, long periods of waiting whilst something else was found, funded, offered, jobs from which guys were laid off, parents who gave up work or doing things they liked so they could ferry kids from one placement to the next, guys spending long days gaming in their bedrooms without seeing another soul, sense of hopelessness, depression and boredom. These guys are 19, 20 ffs.
I am a naturally optimistic person. I constantly ponder innovative ways in which I can make the world better, easier for WB and his friends. I surf the internet looking for funding streams or new projects in the extra hours I have thanks to my insomnia which might offer some opportunities to WB. I smile politely when I feel patronised by the well intentioned because I am *just* Mum (“ yeah that’s Dr. Mum to you ok mofo?” I channel Pulp Fiction characters occasionally, that bit happens in my head, so its ok.) But even I’m feeling increasingly hopeless and helpless. The complexities of our lives, Dad in hospital, needing a mortgage, needing a job, needing support over the summer, needing more time to hug GCSE girl, needing to be well, taking time to notice just how beautiful and wickedly funny the baby of the bunch has become, building a relationship with the bf and his family, needing time to see my best friends, needing certainty, the mundane, stability, is all taking its toll.
I’ll feel better tomorrow. I’ll get some sleep and remind myself I’m doing a bloody good job despite the difficulties and I’ll start the day afresh. This is probably just a blip caused by a stupid cold and not getting a job I didn’t want, but it is also a reflection on what it feels like to not have the support you feel you need. Maybe I should request an MDT meeting for real….