I’m a dad to 2 boys with autism, something I was never prepared for.
How could I be, I had no idea of what it was.
Like many people my age, the first time I saw anyone with autism was about twenty years ago watching Dustin Hoffman in Rain Man. Hoffman’s character, Raymond Babbit, taught me that people with autism were uncomfortable talking to others, obsessed with routine and hated flying. On the plus side, they were also geniuses; especially at counting cards. Whilst I loved the film, I stored away my impressions of autism, blissfully unaware that it would ever be a part of my life.
I went through my teenage years and twenties without ever thinking about autism again. I’d never met anyone who was autistic (at least that I knew of), or even heard anyone talk about it. Before I’d reach my thirties I’d never have another day where autism wasn’t at the very forefront of my mind
When my first son, Jude, was 9 months old, his mum shared with me her concerns about how he was developing. I shrugged them off. He was so young, (he’d been born 7 weeks premature,) so in my mind he was bound to be a bit behind other babies his age. The doctors seemed to agree with my opinion to begin with. I guess they see their fair share of paranoid parents every year, and children do develop at different rates. Three months later I was coming around to my wife’s way of thinking, and I agreed that something wasn’t quite right. Various trips to doctors and consultants followed, and by the time Jude was 18 months old he was given a diagnosis. Autism.
Such a small word.
Such a powerful word.
Such a confusing, upsetting, scary word.
Such a life changing word.
Three years later we would be going through the exact same process with our second son Tommy, also diagnosed at 18 months old. We’d known deep down that Tommy was autistic for at least 6 months previous, by then much more aware of the signs thanks to Jude. This time, I thought I was already battle hardened from our experiences, so it would be much easier to deal with. I was wrong. As much as you try and put on a brave face, you can’t help but be consumed by self-pity for a while. Why had this happened to us twice?
Thinking back to a time before I knew what autism was seems surreal. So much has happened since that I can’t really remember what life was like before. Maybe all parents say that about raising kids; exhausted by the demands and changes being a parent makes to your life. All I know is that being a dad to two boys with autism has been the greatest challenge of my life. I’ve seen and experienced things that I would never have imagined being a parent would involve. It’s been an intense, physical, emotional, and sleep deprived roller coaster, which for a ling time had way more lows than highs
Whilst all of this has been going on in my life it seems that the rest of the world is also, slowly, beginning to take notice. More and more people are being diagnosed and placed on the spectrum, at a rate that seems to show no sign of slowing down
But what has this got to do with writing a blog?
As I’m sure you can imagine raising two autistic boys with such profound needs is pretty full on. My sons require one on one attention all day long, and their challenges and behaviours can be very extreme at times. Add in some pretty crazy sleeping patterns, and some huge self-harming issues, it means life can be pretty demanding.
On top of that I also have to find the time and energy to try and run my own business. Being able to switch off from all of the pressures at home and get my mind into business mode can be difficult at times, especially on 3 hours sleep. But somehow I have to make it work. Raising 2 kids with autism doesn’t come cheap!
So probably the last thing I should be doing with all that going on is committing to writing a blog too, right? Haven’t I got enough to worry about and focus on, instead of adding something else to my daily routine?
To put it simply, no!
If nothing else it will give me something to do during those long sleepless nights that I’m sure many of you out there also get to enjoy!
I want to do this and write an autism blog for a number of reasons…..
1) To Help Me Become The Best Parent I Can Be
Raising children who are on the severe end of the autistic spectrum is really tough. It’s easy to feel lost, like there’s no-one to turn to, no-one who understands. I’ve been that parent, and some days I still do feel like that. Over the last 3 or 4 years, I’ve had times where I’ve experienced extreme lows and not known what to do or how to cope. My life was full of anger, jealousy, resentment, guilt, fear and regret. Feeling like that whilst surviving on four hours sleep a night doesn’t lead to a happy life!
I kept everything hidden inside as much as I could, not wanting to burden anyone else with my problems, least of all my wife. She was going through this as much as I was, so I thought that sharing how I felt would just add to her burden. I was the typical man, not wanting to talk about my problems, even with those who cared the most. When friends and family would ask, “how are the boys?” it was always much easier to say, “yeah they’re ok” than actually tell the truth and break down in tears in front of them. It’s not that I was ashamed to cry, I just felt like if I started I might not ever be able to stop. I also didn’t want to put that burden on them so that they end up feeling sorry for me or worrying about me.
I sunk into a real depression, my health began to suffer, and for years I felt like I was just surviving, trying to get through another day. Life wasn’t fun anymore. No matter where I was or what I was doing all I could think about was how bad our lives had turned out, and how I was failing in trying to fix our boys.
Living and feeling like that is obviously not healthy, and something had to give. For me to be able to cope with Jude and Tommy’s autism things had to change, I had to change. In order to be the best parent I could be for them, I had to accept their autism, and love them for who they are, not dwell on who they might have been. I came to realise that the more open I was and talked about the challenges we face, and the way I felt, the easier it became to deal with them. This was especially true when I talked to other people who have their own experience of autism. The power of sharing with people who understand you, people who don’t judge you or your child can be an incredible thing. When times have been tough and I’ve been close to despair, talking with others has helped me re-charge and find the strength to persevere. It’s given me the confidence and the strength to shake off the negative feelings, the self-pity, the jealousy, and the anger, and enabled me to focus on the love I have for my sons, and that I know they have for me.
Sharing my thoughts, feelings and stories in this blog will give people a glimpse into exactly what life is like for me, raising 2 boys with autism, and at the same time give me more strength to become a better parent.
2) To help others:
One thing I truly am grateful for since Jude was diagnosed is for some of the amazing people I have met along the way. This is something I didn’t take advantage of for the first couple of years, preferring to be more insular. Since I allowed myself to open up I’ve met parents, carers, and professionals from all over the world, and each of their stories has left a lasting impression. For me listening to others has been just as helpful as talking about my own experiences. It makes you realise that you’re not alone in this difficult world. Hearing about other’s problems, challenges, therapies they’ve tried, successes they’ve had, can all make a difference to our own lives. Knowing that someone else is out there going through the same difficulties that you are can be life changing
Autism is a vast, wide and colourful spectrum, which at times makes it so hard to know what choice to make, or feel like you’re ever doing the right thing. There is a minefield of information available on the internet, from organisations, and medical professionals. Yet some of the most practical, and insightful things I have learnt have come from other parents who are living with autism day in day out. Their stories have inspired me when I’ve needed it, and also given me hope for what my children can achieve.
Some of the people I met have dedicated their lives to helping others with autism, and their families. Their love, passion, and dedication have stayed with me and left me with a desire to do the same. Yes I have 2 boys of my own to focus on, but if by sharing my experiences it can make a difference to even one person who needs help, then I’d feel that writing this blog will have been truly worthwhile.
3) To Spread Awareness:
When I went to school I don’t remember there being anyone there who was autistic. Thinking back this could easily have been due to a lack of diagnosis in some cases, but for whatever reasons you believe are the cause, research clearly shows that autism is on the increase. Latest research put autism rates at 1 in every 68 people. Yet the majority of the world has very little idea of what autism is, what it means to be autistic, or what it means to the families of those with autism.
Like parents of any child with special needs, life hasn’t dealt you the cards you expected when you found out you were going to be a parent. Suddenly you have so much more to deal with physically and mentally. Being a parent becomes a much more difficult job than the one that you signed up for. What makes things even harder is that you’re surrounded by a lack of understanding by the people around you. As you’re trying to make sense of your situation you also have to try and find the strength to explain to your friends and family what autism is. It’s not that you don’t want to. You’d love everyone to truly understand what you and your child are going through. Knowing how to explain is another issue. Not only that but you also have to worry about trying to explain to the rest of the world why your child is so different. Why they have such strange habits. Why they don’t interact with the rest of the kids in the park. Why your child having a meltdown in the middle of a supermarket does not make you a bad parent, and that if your child was ‘their’ son they’d still be having a meltdown
Usually we don’t have the luxury of having the time, energy, or the patience to educate the rest of the world. Yet until more is done to highlight what autism is and increase awareness of it, how are our loved ones with autism going to be more accepted in the wider world? It’s only by being educated that things can change, and hopefully the stories I share will go a small way to helping achieve that.
All of my stories here will be 100% genuine and honest. Some of the things I say might upset some people. That’s not my intention, but it’s ok. I fully accept and love my boys, so I’ve no need to sugar coat our experiences for anyone, or waste time ensuring everything I say is politically correct. I’m not writing my stories to preach, and say what I’m doing is perfect and that you should do the same. If you follow a different path to me and you believe that is what is best then that’s great. None of us should be here to pass judgment. I simply hope to bring some more awareness to the world by telling what my experience of being an autism dad is.
4) To speak to others in the world of autism:
Whilst writing this blog I want to be able to talk with parents, professionals, people with autism, in short anyone with a story to tell. By doing so I believe it will help achieve all 3 points I’ve listed above. I have met and spoken with some amazing people over the last few years, and their stories have helped shape me into the parent I’ve become. The autism community contains such a wealth of knowledge, there is so much we can learn from others within it. Talking to others will help me develop my understanding of autism even more, and in turn improve my understanding of my sons too. If it can do that for me, then I’m sure it will offer information, hope and inspiration to others as well, and help spread awareness even further.
Whilst I’ve always been much more of a realist at heart, I’ve recently come to understand the power in dreaming big. No-one should be able to tell us what we can or can’t achieve, and that’s something I try to remind myself every day when I’m with my children. Their stories are what will inspire this blog, and I hope one day we can look back on this together and see just how far they have come. I know that by writing these stories I’m going to be able to connect with so many people and learn so much more about autism. Hopefully you will too!