My Love, My Life 2/12

Hidden Disabilities

I was sat here wondering what on earth i could write about after my last blog, and then it just hit me - well not quite literally. You see there is something i could write about very easily, my children live through it every single day. Hidden Disabilities. My eldest son Joshua has 48 XXYY Syndrome. It effects around 1 in every 18-50,000 boys and men. On the outside he looks like every other boy his age. But on the inside he has a lot of challenges to deal with. He also struggles tremendously with his speech. After 4 years of intense speech therapy they finally diagnosed him with speech dyspraxia/speech aspraxia.

Joshua was diagnosed with 48 XXYY aged 3, so we have had 4 years to come to grips with his diagnosis. But it will always be a never ending battle for him. You see, because Joshua has an extra X and Y chromosome he can not have children of his own - he was born infertile. I'm not going to lie and say that doesn't effect me, it breaks my heart just thinking about it. Joshua is the most fun loving boy you could ever meet, and to know that at some point in the next few years i'm going to have to explain to him that he isn't "like" other children. I will have to explain that he cant have his own children. How do you tell your son something like that? What age is best to tell him without him possibly going off the rails. I have researched so much about his syndrome and i have had a lot of advice of many parents but it does not make it any easier for me. Do i sit him down and tell him? Do i bring it up in a casual conversation? Do i tell him before he has Sex Education at school (which is only 4 years away!!) or do i tell him when he is a teenage? Or maybe should i wait until after he has finished his exams, or after he has finished collage/six form, or settle in to his first job, or after he has met someone he loves, after he's married? Or when he wants to start a family of his own and finds out for himself that he can not have children? After a divorce? I don't think there is a way that "fits" all and if i get this wrong the consequences could be huge. So for now i'm just going to enjoy my son as the fun loving child he is.

People can be so cruel and judge someone before they know the facts. I have been very lucky in the fact that Josh is very much loved by everyone at his school. I was very open to all the parents, and i answered all their questions honestly. Why? Because i had nothing to hide, i wanted people to understand what its like for Joshua. I didn't want to hide it away and keep it secret, we have nothing to be ashamed of. Josh is different, simple as that. But different isn't "wrong".

So here are a few photographs of my precious son today. Looks no different does he? A hidden disability is just that, hidden from the world. But it doesn't mean its not there.

Please take a moment of your time to look at the XXYY Project. We are currently celebrating XXYY so please take a look at the blog. Its 48 days of celebrating our boys and men. All written XXYY Parents.

To see more beautiful photographs please head over to Sarah Ferry's blog