A Dad's Perspective

So today is Fathers Day. I have three amazing boys and amongst lots of things, they each bring me joy, pride and fun. Yet they are all very different too. With our younger two having additional needs, there are also added layers.

I wanted to share a few things about being a Dad of kids with additional needs. I should point out at this stage that these are my experiences and one of the first things you learn about disability is that every experience - even of the same disability - can be different.

Realigned expectations

I’m a guy. I have a son. Naturally my brain then goes to things like we can build Lego together, we can go and see Spurs, we can do all those typical father and son things that you’re 'meant' to do… I’ve had to realise that with Micah, my expectations need to be different.

It can be hard to think back to times I’ve spent (and spend) with Noah doing these things and the fun we have, whilst realising that Micah and I will never have that. Looking at the most basic Lego set and wondering if Micah will ever be able to follow those simple instructions. Sitting in the (quite frankly, amazing) Tottenham Hotspur Stadium, thinking whether Micah will ever be able to sit in a huge crowd of people and see Harry Kane live.

But you come to learn that while those thoughts don’t go away, you also work out other ways of having that fun. Micah has an unrivalled ability to find joy in the most simple things, and seeing that joy brings joy to me. Simply telling him that Harry Kane has scored a goal lights him up in a way no Lego set ever could. It’s about giving him the opportunities to find his version of things.

The need to be flexible in a really non-flexible way!

I’m someone who likes to be quite spontaneous and one thing about Fragile X is the need to have routine and for that child/adult to know what’s coming up. This has been quite a learning curve for me and I’d go as far as saying I was quite resistant to begin with, maybe even in denial. Yes, I know routine is important and makes sense, but surely we can be different? Surely we can help Micah not be reliant on routine and instead be more like how I want to be? Well that’s not how it works. Micah does so much better when he’s aware of 'the plan'. He responds much better to familiarity. I’m increasingly understanding that we need to understand Micah’s world and join him there, rather than expecting him to be able to thrive on our terms.

However, another characteristic of Fragile X is that there is a degree of unpredictability. This means that for all the good routines and familiarity that Micah might have, he might also respond in totally different ways depending on his mood, whether he’s feeling anxious etc. So whilst we need routine, we need to be flexible within that as there’s often no telling how Micah might respond.

As a Dad, I need to get involved

The intensity of having children with additional needs can't be understated. That's not me saying that neuro-typical kids are always a walk in the park - one thing I've learnt is that everyone has their 'thing'. For us, our 'thing' is Fragile X. I don't really know how to describe it, but there is a constant-ness about it. In the short term, you are always thinking through every situation, throughout every day, trying to work out if it's achievable or not, or second guessing how Micah might fare with it. Then there's the long term, where there are endless meetings regarding education, epilepsy, speech and language, and generally the not insignificant issue of working out how to give Micah the best life he can possibly have. All of this is an awful lot to process and deal with, and as Micah's Dad, I have to be present and take on my responsibility.

You may or may not know my wife, Abi, but just a quick thing - she's literally the most amazing mum. Our boys are so incredibly lucky to have a mum who cares so deeply, loves so unconditionally and works so tirelessly to give them all the best. But two children with additional needs is a lot, and I owe it to the boys, but also Abi to be present and to be involved in their day to day. Sure, there are challenges in finding the balance with that and work etc, but there can be no excuse for thinking 'it's alright, Abi's got this covered'. I still need to work on this, but I like to think we make a good team. Being present in meetings, where I can give a different voice, ask a different question, remember something different is a definite positive. My view is that we are both Micah's parents. So why would I leave it all to Abi to pick up, just because she's the mum?

So on a day when kids tell their Dads nice things, Micah, this is what I’ll say to you:

• I love how we enjoy our guitars together
• I love how we lie down in your bed (until you say goodnight and push me out with no notice)
• I love it when you get so excited when you see Kane or Son
• I love that you love music and have such good rhythm
• I love that you are so caring
• I love it when you get so excited every time I finish work
• I love it when I pick you up from school and you shout ‘That’s my Daddy!’ when you see me
• I love it how you continue to surprise me and make me proud in ways I never knew you would
• I love how you are helping to make me a better person
• I love you!