A change is coming!

Bit of a long one this one. I’ve not posted in a while.. it’s getting a bad habit this not posting malarky. We’ve still been having a tough time with Leon.. as you know Leon is autistic. He has really good days, days where he is loving and playful and such a pleasure to be around, but they’re accompanied with really bad days. Some days they intertwine, he can go from laughing maniacally and being over the top happy, to extremely angry and trying to bite – and unlike usual there are no triggers..Normally with Leon you can guess the issue, he might be annoyed if the TV is too loud, or annoyed if he wants to go outside, hungry.. and it’s fixable or he’s often at least able to be comforted out of the meltdown.. Meltdowns normally last anything from 5-30 minutes the difference now is his meltdowns last often 3-4 hours at a time and it is bloody exhausting. Exhausting and scary. He can be intent on biting, and when a 9 year old is going to use all his strength to try and bite you he’ll get there eventually.. I’ve had my face bitten. We’ve nicknamed him Gnasher for the time being. (If I don’t laugh, I’ll cry) Of course the child mental health service locally who are supposed to be providing support for his behaviour are as useful as a chocolate teapot. We initially seen them in May for a first appointment – his next isn’t until August and he’s not invited, parents only. When you consider that he was referred as an “emergency” in October/November.. it’s July and we’re no further forward I really don’t hold much hope of getting anything useful at all from them.

Just before the Summer holidays we seen his paediatrician who I actually get on really well with.. she does everything she can for him and unfortunately I’ve realised it’s a rarity in the NHS! I kept telling her how bad Leons days were sometimes getting but as expected, the days she’d see him he’d be the best behaved kid ever! At least that was up until the last visit.. this visit started with me and her in a small room at his school, and I was letting her know about his behaviour. Of course, along came the “that doesn’t sound like Leon at all, sometimes the school exaggerate these things, there must be an underlying cause, maybe he has an infection” from the doctor which of course all are completely rational, however.. I do know my son, and bloody well at that! Following that though, almost as if on cue I could hear him shouting and screaming from his classroom, so up we went. And in short she witnessed his behaviour. She witnessed his behaviour towards me.

Now considering Leon is normally a very loving boy, she seemed shocked. I told her how he does it at home his brother is often bearing the brunt of it due to sharing a room etc. His brother is also in a special school unit, and both units have been working together in order to support the boys, as Max is a fully able 9 year old but he seems to think its “okay” for his brother to bite him because his brother doesn’t know better.. which is far from ideal. But yeah moving forward.. the doctor wanted me to consider admitting Leon into hospital – my jaw almost hit the floor! He’d be in a secure unit and monitored to determine the issue, I wouldn’t be able to stay with him. I can’t imagine how they think I’d ever let that happen but it was suggested that should I request an emergency referral they’d take him in. The Doctor leading the ward is the doctor who originally diagnosed Leon. I can’t imagine how they plan on keeping him in a bed or in a ward as he’d be a danger to himself and everyone around him. Completely refused it.  The last option was medicating Leon to calm him down, so anti psychosis medication – even though he hasn’t actually been assessed. I was a bit annoyed with these options so we’re still in Limbo. He’s been re-referred to a neurologist. His father had adulthood epilepsy had fits in clusters often, it seems that before his meltdowns his eyes roll all the time, but its not your typical “annoyed child” eye roll, it looks like a tic. He clicks his tongue all the time and does the usual fidgeting but this all stops when the eye rolling is happening and it looks the same as his dad did just before having fits. Almost like he’s zoning out. I’m still not 100% convinced it’s not connected. He went for an EEG which is basically him sitting on a seat with electrodes attached to his head, and they monitor the brain waves (I think..) however when they last done it he was fine, there were practically no incidents when he was being monitored so I don’t feel as though it’s a good reading or representative of how he is when he has these episodes, always the case though isn’t it!

Anyway.. to the point in the post. It’s always been Max and Leon, they shared a cot as babies even though they had their own they’d climb out and into each others. They shared a feeding bowl as toddlers, pram, baths, a room, their birthday parties, beds. They each have their own loft bed and still share a bed on good days. But I’ve decided it’s time to split them up, it’s just not working now. I’m going to be looking for a suitable 3 bedroom home for us. Leon needs a quiet space, with his sensory equipment and things around him. Max is a typical boy, wired to the moon, loves his video games, action figures and youtube and is fairly loud. He needs space without fear that his brother is going to lash out at him. It’s like a storm in a teacup them both sharing a room. They just turned 9 (on the 14th) and Leon is still incontinent.. so long term they will need separate rooms. I hate to leave the house we’re in as I love it, I love the garden it’s perfect for the dogs and us, the neighbours are quiet enough, its 2 minutes from my mums house but I’d regret not doing it now if I leave it any longer. I’ve been subconsciously avoiding doing “expensive” things in this house for a while.. like tiling floors or putting decking in the garden etc as it’s been in the back of my head. Wondering how long it’d last but now it’s set in stone. I’m hoping I’ll have a move soon, ideally before Christmas. It’s no secret I don’t own my home it’s rented, thankfully via a housing association so I know I can do what I want to it decoration wise without the threat of being told to leave hanging over me.. I’ve lived here 8 years now! I need the doctor to write me a letter confirming it’ll benefit the boys health, and I’m hopeful that should speed up the process. We’re not in a hugely overpopulated area so a 3 bedroom one shouldn’t be too difficult to swap to. So yeah, that’s the next thing on the agenda – a house move!  Exciting, yet scary times.

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