I knew becoming a parent would change my life.
Like most people, I probably didn’t appreciate quite how much, but I had some kind of idea.
Being a dad would bring new responsibilities, less free time, and a new purpose.
Being a dad was something I couldn’t wait to be, and I had a vision of what life would be like for our new family.
Yet, when your children have special needs, your life changes more than you could ever have imagined.
Some of these changes can be hard to take. They seem unfair, they weren’t supposed to happen to you or your child.
But then there’s also the unexpected changes, the development you go through as a person, the progress you make along the way.
My eldest son Jude was diagnosed with autism when he was just 18 months old.
Back then I knew nothing about autism, and had no real knowledge about any special needs, or had any contact with people who did.
My life was about to take a massive turn, and I had little idea just how much. Three years later my other son Tommy would also be diagnosed, again around 18 months old.
Over the last 9 years there’s been many changes. Some have been difficult, real challenges to face up to each day. But at the same time some have been for the better.
Firstly, I’ve become a carer as well as a father. The needs of both of my boys are very complex, and they need constant 1-1 support.
They need help with personal care, and it is likely they will need support for the rest of their lives.
It’s quite a difference to the typical parent role I imagined when Jude was first born.
Struggling to be around each other has actually led to me becoming a ‘full-time’ dad. Me and their mum look after one boy each and swap every couple of days.
It gives them the 1-1 care that they need, and the best possible environment for them to live in.
With the challenges autism brings to their lives it can mean we end up quite isolated. Social occasions can be difficult.
Typical family activities such as going to the park, the cinema, days out, are often a step too far. So the amount of time I get to see friends and family has reduced massively.
It’s meant I’ve also had to completely change career.
Instead of working in London full-time I now work part-time from home, fitting everything I can around school hours, meetings and appointments about the boys, and school holidays.
This can also leave me feeling a bit lonely at times. Interaction with other adults (outside of the various meetings) is few and far between.
But, and this is a huge but, despite those challenges, the positive changes my boys have made to ME, far outweigh any negatives
They’ve opened my eyes to the world.
I knew very little about anyone with special needs and disabilities, never gave it a second thought, now they are never far from my mind.
Being more considerate of others, wanting to make sure there is equality, opportunities for all, have become big passions of mine.
They’ve helped me develop incredible levels of patience. I always considered myself a pretty patient person, but I now have infinite levels compared to 10 years ago.
Which is an important skill to have when negotiating your way through this world, especially when it comes to dealing with and fighting for the services our children need.
They’ve helped me be more empathetic, non-judgmental, always thoughtful of how another person might be feeling.
To see the joy in the simplest of things, to celebrate every achievement, no matter how small.
Each day they show me how to be brave, how to get up and carry on, no matter how low I feel or how tough things might be.
If they can go out into the world, not knowing whether anyone will understand them when they try to communicate.
Unsure of how they are going to cope with the sensory overload that’s thrown at them everywhere they go, then I can do anything.
I can fight for them, advocate for them, and never give up in helping them grow and develop
They’ve shown me how to live in the present. As parents our minds often race ahead of us, scared of what the future might hold for us and our children.
My boys have no concerns other than what is happening right now, in this moment. Worrying about the future doesn’t help me in any way, being happy today does.
My role as a parent, and writing about our lives, has also introduced me to a new, amazingly supportive community.
Whilst we might not get to meet face to face very often, the online world means there’s always someone there with advice, or an ear to listen, who understands, and get’s what life is like.
It’s introduced me to some very close new friends.
Being a special needs parent has completely changed me as a person. It’s altered who it is that I want to be, the reason I get up every day, my purpose for being.
The unconditional love that you experience each day makes that impact, and leaves me striving to be a better person.