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…

The Big Build - Birmingham Style


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I love watching DIY SOS The Big Build.  I love seeing people having their houses transformed.  I love the before and after shots.  I love the joy and wonder on their faces.  I love how the houses are always designed to meet the families’ needs and the clever, practical solutions that the team create.  I love that despite there often being a story of disability or illness that has prompted the need for The Big Build, the end result never looks like a hospital.  I’ve seen them fit a through floor lift painted yellow to look like a digger, I’ve seen brightly coloured wet rooms for children that look fun not clinical.  It really is amazing and inspiring. 

 

 

Yet the thing I love most about DIY SOS, the thing that invariably moves me to tears, is seeing whole communities come together for the sake of one family. The house is always full of tradesmen all willing to give up their time and a day’s wages to help someone who needs it.  There are reams and reams of people on hand supporting Nick Knowles and the team to make the types of adaptions and improvements that will make life more manageable and less challenging for the family involved.  It’s not so that they can be on TV, most people are rarely in shot for more than a few seconds, and it’s not to advertise their businesses – the BBC won’t allow that so even branded work shirts aren’t shown.  No, it’s simply to come together, to help someone who needs it.  At a time when there is so much hate and fear in the world, isn’t it great to see love like that?  To see people doing good things for others, just because.

 

Imagine if real life were like that?  Imagine if such things didn’t just happen on the TV?

 

Our house isn’t really geared up for Hugh’s needs.  It’s a bungalow which is great as I don’t have to lift him up and down the stairs, but I do have to drag his wheelchair up and down the front step every day.  His bedroom door is wide enough to get his wheelchair into, so I don’t have to carry him too far to get him to bed, but he can’t go anywhere beyond the living room.  The doorway into the kitchen is too narrow to fit his chair through.  Recently his increase in seizures have meant that now, more than ever, I can’t turn my back on him.  Making dinner involves me parking his chair by the kitchen door and popping backwards and forwards to check on him, or putting him to bed and watching him on the video monitor.  Hanging out the washing is all but impossible if Hugh is home.  I can’t get him into the conservatory either and the only way to get Hugh into the garden is out the front door (down the step) and up the side of the house.  For a boy that loves being outside, he spends precious little time in the garden. 

 

We need to make some changes.  We need a new entrance into the side of the house where we can get decent ramped access without losing all our parking space on the drive.  We need a large kitchen/dining area where all the family, including Hugh and his enormous bean bag, can be together while I’m preparing dinner.  We need level access out into the garden so that Hugh can come out and in as he pleases. 

 
Digging for treasure.

We need a Big Build.

 

It turns out, you don’t need Nick Knowles and TV cameras after all though. 

You just need some friends. 


Some good friends.

Really good friends. 

 

The last few weekends and a fair few evenings have seen our garden packed with a rabble of likely lads all doing their bit to make life better for us, for Hugh.  The skilled and the slightly-less-skilled-but-keen have worked tirelessly digging footings, pouring cement, ripping out the existing conservatory, laying bricks and shifting barrowload after barrowload of rubble to the skip at the front of the house.  It hasn’t looked easy, especially not in this blistering heat, and all they’ve needed in return is few cups of tea, a sandwich here and there and the odd can of beer or 3.

 
Sean getting stuck in.

It was humbling to look out, that first Saturday morning at 7.30 and see them all there, ready to help.  Giving up their Saturday morning lie-ins (should they be so lucky), their weekends with their own children, for us.  It is by no means a small task they have undertaken and I know that some days have been particularly hard work.  Yet undeterred they return, after a full day’s work or on their days off to build a better life for Hugh.

 

Never too young to learn a skill!
The difference this will make to our lives, once complete, will be huge.  The simple pleasure of being able to bring Hugh out into the garden when the sun is shining can’t be underestimated.  Being able to bring him easily into the house, without dragging a muddy wheelchair into his bedroom or the living room will be lovely.  I can’t quite convey in words how much this means to me, to us as a family.  I get teary-eyed and a little choked up trying to explain how simply amazing this is and how lucky I feel to have people in our lives that would do this for us.  We are truly blessed.

 

One of the lads joked that I’d have to make a DIY SOS style speech when it was all complete.  So here’s my speech now, because I’ve no doubt I’ll be sick of the sight of you all (and you of me, and each other) by the time it’s finished. 


 

Thank you.

Thank you to those who have already spent far too many hours here and to all of you who will be in the coming weeks and months.

From the bottom of our hearts thank you. 

 

 
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Who needs Nick Knowles anyway?