It was Mary Schmich who wrote “Advice is a form of nostalgia, dispensing it is a way of fishing the past from the disposal, wiping it off, painting the ugly parts and recycling it for more than it’s worth”. Yet what do we look for in people who we look to guide us; experience. The best coaches, managers, parents, doctors, whatever they are we broadly measure their competence in level of experience. It’s like the passing of time imbues knowledge and yet I’ve met plenty of people in their 50’s or 60’s who are just as stupid, if not more so, than they were at 20. It’s more than the passing of time, for me it’s more about development alongside that passing of time.
I’m only peering into the semantics of ‘experience’ because sometimes people say with regard to Izzysbusy work I deliver that ‘your experience of being a dad with a child with disabilities is so valuable’. Honestly? That’s good because going through it at times was like the opening 15 minutes of ‘Saving Private Ryan’ and I sure as sh*t wasn’t thinking ‘ blimey this is great experience’. The reality is that it’s more akin to ‘if it doesn’t kill you it makes you stronger’. The experiences just make you a better problem solver, a more reflective thinker, develop you a thicker skin, a darker humour and a realisation of what actually matters.
So, embarking on dispensing a list of ‘tips’ or whatever else you want to call it is not something that comes easily. I don’t take advice. I’ve made a professional career from helping people towards their own solutions rather than giving them my version of what works. Nonetheless, I was inspired yesterday by a conversation with the partner of a bloke who has a lot of similar experiences as me to think to myself that maybe some of what the last 3 years has brought and my learning from it may help others. If I’m recycling it for more than it’s worth then I wont be in any way offended if you file it in the same place I file advice I’ve been given that doesn’t fit…!
1. It’s ok to be pissed off – There’s times when you’ll think ‘why my child?’ ‘why us?’ ‘it’s not fair’ and you may, or may not, spend hours or days hiding it, letting it build up or feeling guilty for feeling it. For months I felt guilty for thinking these sort of thoughts because I thought that by thinking them I was thinking that I didn’t want Isaac or accept him. I was wary when people said ‘how are you doing’ of saying ‘terrible, it’s awful, worst thing that I’ve ever been through’ because I thought I was letting Isaac down by even thinking it and felt guilty. I was running away from how I felt, which essentially wasn’t healthy. Any blokes reading this, realise that being pissed off is a true reflection of the situation ; its not about your feelings towards your child.
2. Be honest – It’s really unlikely that you and your other half’s emotional processing is totally in sync ; you’ll feel down at different times, up at different times and need support at different levels at different times. This needs to be communicated (he says with the benefit of hindsight). I bumbled on for months, years even without saying how I felt. I know from most blokes perspectives your first thoughts are survival ; to support your little one and support your partner and not care about supporting yourself. You’re lucky if you have a friend or family member who you can talk to in order to offload but I’m guessing that most of us form a similar view to me ‘what’s the point in talking to anyone who has no idea what this situation is’. Even my closest friends probably heard nothing in the first 2 years about how the situation felt. That’s not their fault but it’s probably not healthy so any blokes in similar situations just maybe take away that nothing will get worse by being honest about how you feel.
3. Forget the ‘being a man about it’ crap – there’s no awards for being the Chuck Norris of dad-hood. Whoever you may have been before your little person arrived isn’t who you’ll be in a few years, honestly. You may have been the most stereotypical bloke who can handle anything thrown at him, who was granite faced, physically and emotionally hard, who has firm views on your role as the head of the household and rigid routines. I’m not being funny, but you’ll not stay that way as the dad of a child with disabilities. If you do, you’ll fail as a dad for your child because you’ll be expecting them to achieve what you’ve achieved rather than seeing that they are stronger than you’ll ever be. You’ll also probably fail as a husband, partner or whatever you are in your relationship because you’ll be the one emotionally distancing yourself and maybe feeling bitter about the situation. It’s taken me a few years to realise it’s ok ‘to be soft’ if that’s how you want to put it. Weird thing is, I don’t talk about it…..I write about it. In reality my mates don’t want to HEAR about my feelings, why would they, and there’s a world of difference between the conversations that a group of mates will have than the conversations that a group of ladies would have. They may read it and that’s great if they do, its neither the reason for the blogs nor an anticipated effect but that’s on their terms if they do. The danger is that as the dad of a child with a disability you may feel that you CANT let your emotions out and that is a recipe for stress. So I guess the advice (ooops! there I go, sounds all a bit Claire Rayner) is, whichever way you do it, somehow get it out there.
4. Expect weirdness — work especially. People have no frame of reference for how to behave around someone who has had a baby with disabilities, and I think that is a bit more acutely the case with dads. Some of my colleagues in 2010 were (and still are) the best people I know but when you throw this sort of situation at them they don’t know how to react. It was about 8 weeks after the twins were born that I was given the card and vouchers that they had collected because and I quote ‘we didn’t know if you’d want them at the time that everything was so bad’ ; it was them trying to work out what to do in an awkward situation. Same when I was back in work properly after the twins were born ; you can sense that people don’t want to ask. What I’ve worked out is that it’s not that they don’t give a sh*t, it’s that they don’t know how to react to what you may say. It’s as if they think you’ll just explode into a mass of snot and tears if they ask, so safer not to. So yeah, prepare for work colleagues being a bit weird. It almost like the old ‘you’ left work before you had a seriously ill or disabled child and the new ‘you’ has just arrived. There’s little I’d say apart from be true to yourself.
5. Don’t compare. It’s easy to say ‘look at them, having the life I want’ and feeling envious. It’ll only make you unhappy. Truth is that some people are interminably materialistic and are as deep as a puddle ; those people are the one’s who’s capacity for empathy just isn’t there and they disappeared up their own bottoms years ago at the first time they tasted success – those people will neither change nor become more tolerable when you have less money, less freetime, more stress and less patience than you had previously! Save yourself the hassle of trying to emulate, measure or care about others standards if you did previously. Cut them adrift and move on. It’s not about what you have or don’t have materially. The most important things in life aren’t what you maybe thought they were before you had your little person and that’s the same for people.
6. Time out – you’ll hear people (professionals like nurses, social workers and others) give it the ‘find time to relax’ ‘do things for you’ stuff. Yeah that’s fine apart from when you spend months or years feeling either guilty about going out alone, because you know it leaves your partner with 100% of the practicalities of care as opposed to 50% or because you’ve lost interest in things you liked before your little person came along. Reality is that you need some way of coping on a day to day basis and whilst that wont offer the ‘time to relax’ necessarily it will divert your mind. Long term it’s no use, I’ve been there and it’s happened to me, it doesn’t help you process your emotions or work out how you feel but it does ‘reboot’ your mind for be it 30 mins or whatever. In my case it’s spending time on xbox or playing on phone apps but whatever it is see it for what it is, it’s helping short term but it wont help you move on.
7 Speak your mind with professionals – as a dad of a little dude with a disability I quickly became aware that I was ‘wallpaper’ for some of the professionals that dealt with Isaac, or at least the rubbish ones who don’t recognise dad’s contributions to care. In reality as a dad with a child with disabilities it can mean that you’re left feeling reluctant to ask a question as you may feel stupid, you may think that your views aren’t important. If there was a main, underlined bit of advice I’d love to throw at any new dads in my situation it’s to not wait if you have something to ask, to say or to contribute to the discussions about your child. Don’t feel stupid, you’re not. I think there’s a lot of professionals out there that have a misconception that dad’s will just come into meetings / clinics etc to shout and get angry and perhaps that’s been some of their experience. However, that’s not your legacy to live with.
8. Don’t take advice! – this is the final one. Honestly, what I’ve written may be the biggest load of useless crap you’ve ever read. You’ll dig your own trench as a new dad of a child with disabilities. At the end of three years your experiences may be similar to mine, totally different or somewhere inbetween. I just know that if I’d had this to read three years ago it may have helped me think about some of the things I was going to face so I could start to think about how I’d go about digging my own trench. If any of it is patronising please understand I don’t mean it that way, I know no more than anyone else apart from having that mythical ‘experience’ thing.
Well, thanks for reading what became an essay rather than a blog….nevermind, I promise the next will be shorter…!