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…

Technology: A Special Saturday Post

Happy #specialSaturday everyone!

This week’s theme is Technology

Initially I interpreted this to mean iPads, computers and communication devices that support, teach and allow children with additional needs to learn, develop and interact with others.  Little H doesn’t use any such devices and until recently showed little interest in even the television due to his visual impairment, though through a conversation with @pressuresupport and reading about Mission iPossible, I believe there may actually be programmes on the iPad that Little H CAN access and I intend to take full advantage of it as soon as possible.  So at first, I assumed this week’s theme wasn’t relevant to us.  And then I realised, we use vast amounts of technology with Little H every day.   So here’s a quick run down:

Ketone and blood testing monitor
Twice a day, I test Little H’s ketone levels and blood glucose levels using a monitor similar to this one.  Little H has just started the ketogenic diet and the ketone levels in his blood need to be between 3 and 5.  The hope is that once his ketones reach this level, they will start to have an anti-epileptic effect on his brain. 

Feeding Pump
Little H is fed through an NG (naso-gastric) tube.  A pump like this sets the speed and ensures he receives the required amount. 

Switch adapted toys
The wonderful charity Steps awarded Little H a year’s free membership.  Every 3-4 months he receives a new switch adapted toy on loan.  The switch he uses is very basic and requires minimal pressure on his part.  He can simply move his hand across the switch and it will activate the toy.  Little H has very little control over his movements, often it is difficult ti tell which of his movements are intentional, so a switch like this is perfect for him.  It has finally given him the opportunity to ‘ply’ independently.  The toys he likes are brightly coloured, with noise and flashing lights.  We are hoping that over time he will connect the action of pressing the switch with the reward of the activated toy.  If he can learn the basics of cause and effect in a fun way like this then potentially in the future, he may be able to use a switch device to communicate with us.  Here’s hoping anyway.

SATs monitor
We had a bit of a fight in our hands to get a SATs monitor.  H’s seizures are so subtle that monitors used to detect tonic-clonic seizures were not appropriate.  H simply stops breathing during a seizure and initially an apnoea monitor would detect pauses in his breathing while he slept.  His seizures progressed though and although he still doesn’t breathe, he now has some small subtle movements that fool an apnoea monitor into thinking he is still breathing.  The only reliable way to detect a seizure while we are asleep then is to measure his blood oxygen levels.  Of course, conventionally seizures are not detected in this way and so the NHS weren’t keen ti recommend we use one.  Letters, phone-calls and emails later they agreed, that potentially a SATs monitor was appropriate but then didn’t have one available for us to use.  The Boparan Charitable trust kindly agreed to fund one of these monitors for us and we can now sleep easier at night knowing that if Little H does stop breathing that this monitor will alarm and wake us in time to resuscitate him.  This wonderful piece of technology basically saves H’s life.

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