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.
This blog post is part of the
awareness raising campaign - Special Saturday - raising awareness of people
living with special needs around the world.
Following on twitter - @Specialsat
and retweeting hashtag - #specialsaturday
I use (d) all of these with Smiley except the Ketone monitors. And I'm sure that Little H will get the cause and effect thing: Smiley now presses a big red switch to give home/school messages that are recorded by myself and the teacher - and she loves doing it :)
ReplyDeleteYou have highlighted some very important technology and your post definitely creates further awareness of what technology is available. I love those switches, as they really do create some fun for the kids! :)
ReplyDeleteI think we're are enormously lucky these days to have so much technology to help monitor/feed/entertain/educate our children. I can't even image what life would be like if it was all taken away.
ReplyDeleteI really hope the ketone diet helps, I've heard it's quite a commitment- worth it if it helps though I'm sure!
p.s. Did you know your twitter link in the sidebar leads to a 404 error message?
ReplyDeleteThank you for highlighting how life saving technology can be. It's such a shame when people have to fight to get what they need.
ReplyDeleteThat's great to hear how much Smiley has come on Blue Sky. It does give me hope.
ReplyDeleteDi, yes switches are great and their potential for use in the future to communicate is very exciting.
Thanks Renata - no it's scary to think how different things would be without such technology. Some of our children's lives do depend on it. Thanks for the hint about the link - I'll see if I can sort that out now.
Sally, yes, it was disappointing that people have to fight for things and what a postcode lottery there is in the UK. To be honest, on the whole, I think we've been very lucky with the support we've received, but in this instance, I felt I had to beg for a vital piece of life saving equipment. Alls well that ends well though - we got one in the end! :D