My son has congenital Nystagmus. In simple terms he has an eye condition that results in lateral eye movement. Wobbly eyes if you prefer. The severity and impact of this condition can vary. Like all parents we worry about the impact Nystagmus will have on our son as he grows. Neither of us are keen on meeting new people or socializing. So with no small amount of trepidation we drove up the spine of the country to Newcastle to spend a day listening and learning from other people that are going through or have experienced some of the same things as we will face.
The first thing I noticed walking in to the conference was a man in glasses with his chin to his chest and his tablet angled away from him. This made me smile as my little one does exactly the same thing. I’ve never seen so many small children wearing glasses before. We didn’t go for the creche option so we were worried about a seven year old sitting through all the talks. He got bored at points but as usual he surprised us with his fortitude.
There were talks by researchers, experts in navigating the education system, a parents group and even a talk about the challenges adults face. I’m not going to go in to the details of each session as much of the day was recorded and will probably be available to watch soon. What I will say is that we know we are not alone and more importantly our son knows that he’s not alone. There are many people going through exactly what he is and more usefully there are plenty of people that have had great lives and careers regardless of any disability.
There was a point in the parents group session where every single one of us was either in tears or nearly in tears. There had been a few parents clearly frustrated with the lack of support they had been receiving when out of nowhere a young man called Michael from Belgium started talking about his experience. He had clearly railed against life and was only just growing into himself (we’ve all been there). He talked about his love of football and not being able to follow the fast moving ball and his being the only one of his friends not driving away in a car when he was eighteen. This upset us all but then he said something I’ll always remember (I am paraphrasing here though). He said that us as parents need to be there. Our children will fall, and fall hard many times. We just need to be there to help them up and point them at the next challenge. For me this has made me more determined to ensure that my son has hobbies and skills that he will not be disadvantaged in, but more importantly I have been reminded how it important it is to always be there for my children.
I’d like to thank everyone at the Nystagmus Network for their hard work and welcoming atmosphere. The open day was thoroughly enjoyable and highly informative and I’d recommend it to anybody wanting to learn more more about Nystagmus. Oh and I’m really sorry that my son who was chosen to pick out the winning raffle ticket chose mine. My wife could have died with embarrassment.