Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

Seeing my son through the eyes of others

For the first six months of my youngest son’s life, I knew deep down there was something not quite right.  Family and friends tried to tell me he’d catch up, I was imagining it, he was still so young.  But I knew.  I just knew.  I made a mental note of all the things that were different about him and tried not to feel so awful and guilty for looking for the things that were wrong rather than the things that were right.

And then our worst fears were confirmed.  An MRI showed his brain was underdeveloped and the long  journey towards a diagnosis began (we’ve not reached the end of that road yet).  But finally I could stop looking for all the things that were wrong.  I wasn’t imagining it.  Now I could appreciate my son for who he was. 

We developed a new sense of normal and although I’m aware he is severely developmental delayed – probably functioning at about that of a 3-4 month old though he is one and a half – most of the time I just don’t notice.  He’s my son.  My beautiful little angel.  He is who he is.  And I love him. 

But a certain times, I’m confronted with the reality of the situation.  It makes me sad to see him through the eyes of others.  When a parent of a similar aged/sized child asks if he’s talking and walking, when an old man waves and tries to make him smile and he doesn’t even register they’re there, when he is wheeled out of an ambulance hooked up to monitors and oxygen looking sick and vulnerable.  I don’t want people looking.  I don’t want people pitying him.  I know they’re not being unkind but I just hate to see him through their eyes.  The new special needs equipment has the same effect – electric powered seating system, standing frame, bath seat.  When I see him in these, it’s as if the blinkers have been taken off and I am confronted with the stark reality that my son is different.  And that makes me sad.