A Scary Night For Me And My Boy

A small update on my Boy...

Last night, at around 1.30am, I awoke with a sense of foreboding. I got up, opened my bedroom door, and was greeted with the distressing noises of J choking and having another 'episode'.
He had blood seeping down his nostrils, and out of his mouth, as he had bitten his tongue. He was choking on blood and mucus.
I managed to clear his mouth, and held his jaw firmly, pushing my own body against his, to try and keep him in a half recovery position. This was tricky as he is such a big lad, his bed is a soft, king size, making it more difficult to turn him, and I was trying to take his pulse, blow on his face to cool him down, wipe the blood and mucus away, and talk to him to reassure him I was there (if he is aware during these episodes I want him to know mummy is there for him).

This was a very scary episode for me, as he was particularly noisy with his breathing, the choking, and how long it took him to recover this time. He tried to get up when he had come round, and wanted to use the loo. He couldn't stand without support, and then in his confusion he attempted to go down the stairs - which would have resulted in him falling down them and ending up with even worse injuries.

This morning, he is unable to talk properly - I know he has speech and language difficulties as it is, but he cannot even say the words he knows, without sounding as if he has cotton wool plugged into his cheeks. He is clearing his throat a lot, and just isn't the usual J. He looks really poorly. I've medicated him, and am just having to keep an extra eye on him.

The frustrating part is, that we have been told to only call the ambulance if an episode continues on for longer than 20 minutes, and even then, when they arrive, they make the decision not to transport him to hospital, as it would be even more distressing for him. I agree with them on that. Waiting around in a noisy, crowded, hot, bright hospital is not conducive in helping to make J better.
We just have to wait until next month for his MRI scan to find out if there is anything going on in his brain that could be causing these episodes.

On a brighter note, J loved his presents. He is finding comfort in pressing the 'Tubby Custard' train to make noises, and as the picture below will show you, he has lined up the 'Tubby toast' set, with cups and saucers, in his preferred pattern of colour.

My Boy Turns 16!

My Boy turns 16 shortly, and it doesn't seem five minutes ago he was a little, cuddly baby, whose future I dreamed of being vastly different to what it is turning out to be.

Turning 16 is a milestone for most teenagers, but J is not 'most teenagers' ;

- He is helpful - he will fetch and carry things I ask him to, without the regular teenage shrug, "hrumph" and "do it yourself" reply. 

- I don't have to worry where he is at 11 O'Clock at night, or deal with his grumpiness about me not allowing him out to someone's party. 

- He doesn't have music blaring out from his room, rattling the windows, and annoying the neighbours. 

- I don't have to worry about alcohol, drugs, falling into the wrong crowd, and the struggles young people face everyday from peer pressure, the media, and celebrities.

I've always believed in looking at the positives, and although he won't be out with friends, attempting to get served a pint of lager, or hanging around with older lads who drive, he will be safe with us at home, and will have everything he enjoys in his life - cake, iPad, his favourite pieces of Lego, and no stresses.


J has always been very tricky to buy for at birthdays and Christmas time, as he never played with toys in the way other children did, didn't like books (he refused to sit and have a book read from a very young age, and if you sat next to him as he looked at a book, he'd get up and walk away (!) ) and had no interest in these special days. 
This last year, his love of the Teletubbies has resurfaced (thanks to YouTube and their clips, and the new episodes which have been made, on TV), and I've bought him two Teletubbies toys. 
He won't play with them in the way they are intended to be played with - as he never did with any toy he was given as a child - but I know he will love them, as he likes the colours, and will line them up in unusual places, such as in the pots and pans cupboard, where four coloured pen lids are residing at the moment, in perfect line, and always in his preferred order.

Teletubbies Custard Train

This is the Teletubby 'Custard Train', and it's a 'pull-along' toy. The Teletubbies are stuck into their seats, so they won't get lost.

Teletubbies Toaster Set

This one is the toaster set, as he loves the 'Tubby Toast' scenes in the shows. There are plates and cups in matching colours, and again, I'm sure I'll see them lined up in random places around the house. 

Despite him not playing with these toys as they are intended to be, he gets a lot of pleasure from them, and that's what matters.

The smaller presents are all the things he'll gain enjoyment from ; as an example of two of them - sand timers, in his favourite colours again, that I think he'll enjoy in a sensory way, and two big bars of chocolate - his other great passion! 

He knows there is a birthday approaching, as the presents are wrapped and in view in the utility room, and every so often he will say randomly, "birthday soon". What he doesn't know is; the cake is locked away in the garage, as he'll eat it all without remorse, and in one go, if he had free access to it, and that he is the birthday recipient - I do reply, "yes, J's birthday", but I'm not sure if he computes this in his brain, or is bothered that it is his. 

My baby is turning 16, and although there have been some very hard times, it's been an amazing 16 years, full of adventure, fun, silliness, and life.

I Have To Apologise

I have to apologise. Apologise for being absent for so long from this blog. I've not been absent from your emails, but finding the time, and inclination to write on here has been hard. 
Life with three children is pretty full on as it is, but when two of them have special needs, and the other is a rising teenager, it is full of new challenges that I am adapting to.

A lot has happened personally to us as well, but as this blog is read by anyone and everyone, I am inclined not to share most of this with you on here, as it can be read by people with a personal agenda, and you know I am all about privacy - I am not the kind of blogger that posts photo upon photo of my children, and hundreds of 'selfies' of myself, and I never reveal names. That's just my style, and I will stick with that.

I may write further about what I'm about to tell you, but for now I will be keeping it brief. 
J has been experiencing 'episodes' of falling unconscious, with no warning. These episodes last around 20-30 minutes each time, and he is fully out of it. His breathing is heavy and gravelly, and there is nothing that will rouse him. The first episode was terrifying, as I heard a loud BANG and then this loud snoring noise. I went to investigate, and found J on the bathroom floor, head wedged under the radiator, breathing as I wrote above, and I panicked, thinking he was dying. The ambulance came within minutes, and stabilised him. He had another episode early the next morning, and during that one, he chewed the whole of the left side of his tongue, which was bleeding heavily, and damaged for weeks. A few tests were carried out at the hospital, but as he has his learning difficulties, they could not perform an EEG, as he isn't able to remain stock still for at least half an hour. 
To sum up ( as I said I would keep it brief!), he has had many more of these episodes, the epilepsy specialist does not believe he has epilepsy, as his body does not 'jerk' or move at all when unconscious. 
J will be having an MRI under general anaesthetic in a few weeks time, to see if there is anything going on in his brain, that could be causing this. 

I will try to post more on here, as I know my old posts are still shared and talked about, and when you visit here, you see I've not been active for a long time. I never thought I would be so slack about my blog, but that's life, and if you knew what I've had to deal with personally, you'd understand wholeheartedly, but I am slowly regaining my zest for trying to make a difference in the world of special needs. 



Thank you for sticking with me.