A little bit scruffy, very hairy, one tatty glove at all times - gorgeous!

My very talented sister took these pics of my beautiful J!

A Dads Perspective

I asked Kristina if I could write a post from a Dads perspective and she readily agreed. Having asked I then questioned what I was doing, what does that actually mean, in my best Carrie Bradshaw impression - are Dads any different?

I couldn't come up with a definitive answer so I've put together a random selection of thoughts from my point of view. During some limited research (20 minute tea break at work) I found that there are very few, if any, Dads perspective Autism articles on the web. There are some very good blogs written by dads but these don't really get to the nub of Dadness (I'm still not sure this post does). I did find a website for The Fathers' Club, Kent, set up by John Franklin six years ago after he became aware that most parenting support offered was failing to reach the dads of autistic children. Franklin says it provides "a forum for fathers to debate issues, discuss what has worked for them and share best practice" (for forum I read Pub). He says this is a major step for many of those attending because "men are not very good at discussing their emotions and feelings". I have never been but it sounds pretty cool.

To start with, a couple of apologies - I make some huge sweeping statements about Dads, blokes and women in general, these come from laziness on my part, not wanting to constantly write 'with the exception of primary carer Dads, Dads who have decided to stay at home to look after the kids' etc etc - you get the point. Secondly I am an architect so I am more used to pictures than words so if you are expecting the usual well crafted eloquence from Kristina please prepare to be disappointed. Heres a few ramblings:

Nerds United

Having a child with autism is really not very easy. The one advantage we have as Dads (as opposed to mums) is that most of us are natural techies and natural nerds. A lot of autistic kids, and J is no exception, get obsessed with technology and mechanical stuff so for Dads it is really not stressful to endlessly talk about different motor parts for lifts or trains or cars or computer games etc. We actually find it quite enjoyable, lets face it lots of blokes who are non ASD have techie, nerdy hobbies and to be honest are miles more boring than ASD kids, most of their facts are wrong, they get too emotional about all this stuff - hard facts, logic, lists, don't you just love that stuff. Alright most of the time you have to talk to yourself as you get no response, but J is happy, he's sitting still whilst I draw a very (and i mean very) challenging perspective of a lift shaft with a traction motor - seeing as I choose to do this stuff for a living i secretly quite enjoy it.

To be serious though are these obsessions and hobbies and interests that bad? I think golf is quite probably the most ridiculous invention ever, the stupid trousers, the formality, the 'golf captain' - but lots of people enjoy it and it is socially acceptable. Riding lifts for 2 hours though is seen as weird - why? When I was a kid I was obsessed with Lego, not just a bit, I mean 24/7, all the time, made lego models, read about lego, drew pictures of lego, everything was lego - and this was socially acceptable ("he'll be an engineer when he grows up") but somehow some of the obsessions and interests these kids have, and the level of obsession is seen as not 'normal'.

As a Dad of a child with Autism, it is much much easier if you are an 'Inbetweener'. If, as a Dad, you want to live vicariously through your children (mini rugby, football club, tennis club etc etc), then to be honest you're fucked - i'm not criticising this per se, some of my best friends do this stuff with their boys and they all love it - , but if you have a child with autism, you will really struggle to keep up with the 'joneses' and have a normal life, you will live in perpetual disappointment. If you accept and embrace that Nerds United is the way to go, and to be honest why give a shit that people think some of this stuff is weird, then your life will get a whole lot easier. My dream for J is that he becomes a Maths Professor at Cambridge or a computer programmer at Microsoft, these people are supposed to be eccentric, they are supposed to be odd and everyone thinks that's great!

95%

Having a child with autism affects almost everything you do (95%?). There are of course the big hitter items, the very bad days, the very big tantrums etc but I've been thinking more and more about the million little things it affects in our lives.

Most of what we do, most of how we live is in some way to try and reduce J's anxieties and try and have a calm life - it's difficult to give examples but it's things like always leaving work bang on 5.30 to get make sure I get home for bath (my staff and clients get very irate that i am so strict about this), where and how we go on holiday, where and how we go out, the routine, the regularity - the difficulty with describing this is that it is so ingrained and so sub-conscious that unless I sat down and compared our lives to normal people (generally a very BAD idea) it's almost impossible to pinpoint exactly what it is we do.

I had a very big argument with a friend who was going on and on about us going cycling at the weekend and why wasn't i committing to a time/ date etc etc (pub, too much beer!), i was so angry i was shaking with rage, he apologised for going on about it and i sent him this text - 'My life is very particular and restricted with J so I struggle with people questioning what i can and can't do. I don't mind anyone not understanding the day to day reality but i do mind people not respecting what I say I can and can't do'

Double Teaming

There is a well known statistic (although impossible to find where it has come from) that 80 - 90% of couples with an autistic child gets divorced. I think it came from Jessica Simpson saying it on Oprah about her own autistic child and subsequent divorce from her husband (I'm no scientist but that's good enough for me) - anyway, one job for the Dad is 'Double Teaming'. In other words the most successful couples and marriages, if you have a child with Autism, is to work as a team - more importantly to work as the wingman.

Dad's are at work all day and are generally a bit stupid when it comes to childcare but as double teamer wing men we are pretty cool. Kristina and I are like top league basketball players with our blocking techniques (one moving J to the bath, the other blocking the way to the computer). Blokes go on about the beautiful game and the teamwork and passing skills of Brazil, you should see me and Kristina, a seamless, fluid, beautiful, ballet of movement, passing, blocking, dare I say it, herding! It's a military operation to rival the SAS, it's a tag team of Olympic standards - if it was a national pastime (One Man and his Autistic Five Year Old?) I would be up there with John Noakes and Shep easily.

It's important though, as a Dad, that you support, you are the wingman - this is your job, which brings me neatly on to my last thought:

Who cares for the carer?

The most fundamental part of being a Dad with a child with autism is not really the Dad part but being the husband of a wife who has a child with Autism.

I don't know if it is blokeness, i don't know if it's genetic, i don't know if it's a Darwinian hunter/ gatherer thing or if it's just me but to be honest I spend as much time, no more time, worrying about Kristina as I do about J. J has all the love in the world, he is lucky enough to have Kristina. So who cares for the carer - our job, as Dads, is to the whole family and to our wives, as I said earlier we go out to work, we get to switch off - we don't get the constant pressure, the constant barrage of stuff that comes with autism. We get home and we listen, we are a shoulder to cry on, we don't always understand (as I said we are generally a bit stupid) but that doesn't matter, what matters is that it is our job to care for the carer.

There is lots of stuff we can do as Dads of children with autism and I am not suggesting we don't have the love or the emotion or the tears or the pain but we deal with it in a different way and we are able to switch off, all men I know are able to compart-mentalise their feelings, i know very few women who can do this (i told you i made sweeping statements!). By helping Kristina I am ultimately, of course, helping J, there is no point in me just doing exactly what Kristina does, as I said earlier it's all about teamwork and that means that it's our job to be the support, to be the wingman.

And finally...

Most of the time I feel blessed to be the Dad of J and G and the husband of Kristina. Yes it's hard, sometimes very hard to deal with (you should see my beer bottle recycling each week!) - sometimes you want a normal life, I want to take J to the cinema, or to the fun-fair or to a bouncy castle (fan noise big no no). I love him to bits but also I like him - i like his quirkiness (I put him to bed tonight wearing 1 glove which he insisted on?), i like his weird skills, i like nerding, i like joking with him about parking on the wrong level of the car park (got to be Level 10)

Do we live a 'normal' life - no,

Is it easy - no,

Do we live a happy life? - most of the time yes and I would rather have a funny, happy life over 'normal' anyday.