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…

Cyber Friends

Feeling lonely?  Join Facebook. 

You too could have 500 friends


For a long time I held the belief that relationships and friendships built online are based entirely on lies; fat old men, paedophiles on the prowl, sad lonely spinsters all hiding behind their computer screens typing lies about their age, weight, interests and how attractive they are to convince unsuspecting fools to fall in love with them, befriend them or give them tons of cash.  At best it provided those who were too shy to go out and meet ‘real’ people a place to be themselves, but for the most part I looked upon it with derision and suspicion.  I remember my younger brother talking about friends he had met online and I openly mocked him for his stupidity and discounted them as neither real people nor real friends.  The advent of social media sites like myspace, bebo and facebook passed me by for some time before I took the plunge and signed up and even then it was only so I could nose at other people’s photographs.  It irritated me to see people with 500 “friends” because clearly these people weren’t their real friends.  Real friends pop in for coffee, or you meet them for a drink after work.  Real friends are people you’ve known a long time, that know your family, that you went to school with, not some random that friend requested you and you were too embarrassed to ignore them.

When it became apparent that Little H’s difficulties weren’t just a passing phase or that he’d catch up, I found solace in the internet.  It was my way of helping him, of doing everything within my power to make things right, of keeping myself sane.  I googled  every medical term that was ever mentioned about him and searched internet sites for hours with lists of symptoms and characteristics certain that I could diagnose him myself.  Most new mum’s sign up to the Bounty Website – the go-to place for all pregnancy and child related questions, and I was no different.  On a forum there, I begged if anyone recognised some of the medical terms that H had been branded with (hypotonia and microcephaly I think) and a lone voice replied, a beacon of light in the darkness, that Little H wasn’t dissimilar to her son and that he too remained undiagnosed.  Finally, I found I wasn’t the only person in the world who had an undiagnosed child; there was at least one other out there!  She pointed me in the direction of Swan UK, I joined the facebook group and the rest, as they say is history.

The group was much smaller then, though it has grown rapidly since, and I quickly became ‘friends’ with the members on there.  It was a place to ask questions, to share fears and joys and I no longer felt alone.  H’s health deteriorated and we lived through some truly terrifying ordeals and experiences.  The friends I had grown up with and shared first crushes with, who had moaned about school with me and danced through many a drunken night with me struggled to support me now.  It was my virtual friends that sent me messages of hope and strength and positivity.  They were the ones emailing when H was rushed to hospital while we were on holiday, they were the ones texting to wish me luck for appointments.  It was these online friends, people I’d never met in person, which knew more about my deepest, darkest, most depressing fears at that time and it was them that pulled me through it. 

Early on I was asked if I wanted to blog about our experience but it seemed a little too self important.  Although I enjoyed writing generally, who on earth would want to read my ramblings and did I really have anything worth saying?  At 4 o’clock one morning as I watched the sun rise over the hospital car park from the window of the isolation unit in the high dependency room, the flood gates opened.  With the steady beep of the sats monitor in the background and the oxygen machine whooshing rhythmically I began to write.  The words came stumbling and tumbling out; my fears, my frustrations, the loneliness and emptiness, spilling from my brain onto the tiny screen of my blackberry phone.  I barely proof read it before emailing it to Lauren at Swan UK.  My first ever blog post. And finally, at about 5am feeling lighter and as if a huge weight had lifted from my shoulders, I slept. 

From that point on, blogging was a release and a means of ordering my thoughts.  All the worries and fears that churned around my head could be placed neatly, in arial font, online.  Those words and thoughts I couldn’t bring myself to say out loud could be typed instead.  I could finally breathe again.  I never really expected anyone to read it and I avoided sharing it with family and friends.  But my online friends read it and every step of the way they were with me, offering words of encouragement, nods of agreement and lots of virtual hugs.  I didn’t really start writing to raise awareness, which would have been a much more noble thing to do, it was more to help me process all of the thoughts milling round my head.  I viewed it as an online counselling tool, a way of stopping myself going completely mad.  However, one of my proudest moments was when someone stumbled across my blog and finding similarities with her own child then accessed support from Swan UK as well.  To have helped just one person find support and feel less alone is amazing.
Feeling the love, cyber style

Through Swan UK and through blogging I have met some of the most wonderful people.  Some of them share similar challenges to me and some of them don’t.  Many of them live hundreds of miles away but I have contact with them daily, whether that be through facebook, or text, or twitter, or skype, or the good old fashioned telephone (we’ve not regressed as far as letter writing just yet).  Some of them I have met in person and some I am hoping to meet soon.  The wonder of making friendships online is that by the time you do meet face to face that you already know so much about each other that there is no time for awkward silences, (except for the initial awkwardness when you’re not really sure if its them as they don’t look quite like the glamorous pictures they’ve been posting.  Maybe we should revert back to wearing red carnations in our lapels?)

All in all though, since none of the friends I have met online have turned out to be psychopaths (as far as I know) and most of them aren’t perverts either (you know who you are) then I shall have to retract my earlier statement.  I have genuinely met some of my best friends online.  

I guess that means I owe my little brother an apology too!

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You can visit the SWAN UK website to read more about undiagnosed children and their families by clicking here: www.undiagnosed.org.uk


To celebrate the diverse and creative blogging community, and to tie in with the celebrations of ‘Undiagnosed Childrens’ Awareness Day’ on 13th April 2013, SWAUK will be hosting its very own blog awards.  Nominations start on 21st January.  You can find out more here .


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