Saturday/Sunday 4th, 5th April.
Both days this weekend I have been totally confined to barracks with Thing One and Thing Two, while Greg and our neighbors (the nice ones) made a start on The Shit Shack. The ceilings are now repaired, the walls painted, the old furniture removed and the mouldy carpets ripped up.
My task is now to clean and scrub the place, source cheap carpet tiles and lots of curtains from The Salvos second hand stores.
Interesting discovery's are that each room has just one plug socket (why did we not anticipate this?) and that we may well have a bee hive/nest somewhere outside the back door.
Alices latest fetish is now to wear socks on both hands and carry an empty cereal box wherever she goes and Georges disappointment at the house his parents are making him move into continues to grow. But it was at least it was a beautiful day to wash pigs.
Monday 6th April.
Think I might need to accept that absolutely zero education will be forth coming for my kids this year. Whilst I can sit George in his room and give him work to complete on his own, its glaringly apparent that that approach is what has been done at school and thats why he cant spell most 4 letter words and is basically illiterate. What he needs is a Mum who can sit with him, start at the beginning and give him some much needed one to one education. However, with Alice to look after that is near impossible. Right now Im at a loss as to how I do this. I have an extremely high needs child who requires 24/7 care and a 10 year old who is being totally neglected and is bored out of his tiny mind. The only option I see at this stage is that I just say "fuck it" to day time education, just worry about entertaining the little buggers and when Greg has finished work, I study with George for 2 hours each evening and we do half days at weekends. Not sure where that leaves me anytime to cook, clean, wash clothes, iron, disinfect and prepare The Shit Shack, answer the ever increasing back log of emails from Alices school, Physical Therapist, Occupational Therapist, Speech Therapist, Metabolic Specialist, Pharmacy or when I arrange virtual meetings to sign off this years disability funding. We are just over a month into this and Im drowning. Balls are being dropped left right and center and anything involving balls in this house is always a bad thing.
Tuesday 7th April
Today we carpeted The Shit Shack. Greg managed to source a job lot of end of line carpet tiles, enough to cover all three bedrooms, the office, lounge and dinning area. They are some interesting colors, it has to be said, but they cover the floor and really that's all we need them to do. Typically all the second hand shops are now shut, so my plan to kit the house out in cheap curtains all from one place,with minimal human contact and expense has been scuppered. Instead I've been furiously scouring Facebook Market Place and Gumtree and buying up what we can as quickly as possible and having to get out a lot more than I would of liked.
The only words out of Alices mouth today appear to be "fuck you". Dealing with this by taking every toy from her room, confiscating her I pad, telling her shes going to bed and hour early with out her favourite "crunchy chicken" for dinner and no bedtime stories was again met with a completely non fussed "fuck you". I'm still not convinced we have Tourettes, although if you were a fly on the wall in this house I suspect you'd think otherwise, because its all in context, its all said with passion and anger and its absolutely intentional. With Tourettes, its kind of blurted/forced out of you and is rarely in context. However I do think there is an element of impulse control going on and once she starts she just cant stop herself, much like a 2 or 3 year old will look you in the eye and keep doing the very thing they are told not to. For those that dont know, kids with the milder (oh the irony) version of NKH, impulse control issues are huge, as are other wonderful things like aggression, self harm, OCD, ADHD, extreme behavioral issues (with the emphasis on EXTREME) and also tics in varying forms. At this stage I'm assuming its somewhere between a tic, an impulse issue and basically just being a rather hideous child right now. Add to that the fact that its a Full Moon and the rest of today has been cancelled due to lack of enthusiasm. Yes the Full Moon is a real thing in autism and special needs and even in the elderly and changes in their behaviour. There are varying theories, all scientific and all make good sense, not crazy mystical stuff, and I can certainly confirm that if its ever going to go to crap in this house its the days around a Full Moon.
In the world of COVID, Boris Johnson the UK Prime Minister is now in Intensive Care, Trump is proving to be more of an inept arsehole than even I could of possibly anticipated and thankfully some of the worst hit countries seem to be getting a minor decrease in cases. Here in Australia we are still doing well and questions are starting to be raised about whether we:
a/Caught this early enough that we wont be that badly hit
b/ Are successfully slowing things enough that whilst the worst is yet to come we hopefully wont get over whelmed with it all at once or
c/ This is just the calm before the storm.
Australia now has 5,895 with 460 in WA and 45 deaths nationwide.
Wednesday 8th April
Alice seems more balanced today which is a welcome relief for us all. Her latest fetish for empty cereal boxes has now morphed to a passion for egg cartons and pieces of carpet tile that she collected up when we were at The Shit Shack last night. In addition to this, she's insisting on wearing swimming goggles all day and even took her morning nap in them (holding an egg carton and carpet tile).
George spent most of his day sitting by the front door awaiting the now over due arrival of his latest Beyblade and found myself looking in the fridge far more than I should, constantly hoping something of interest would suddenly emerge. In fact its much the same with Facebook nowadays, i keep looking at my phone hoping something interesting will pop up, but it doesn't so I find something else to do and then repeat the cycle. Look in fridge, look at phone, look in fridge, look in phone, repeat to fade.
We spent two hours at The Shit Shack tonight, as we are each evening, finishing up fitting the carpet tiles, cleaning and doing things like putting together clothes racks, and creating something resembling a kitchen, as there is not a single wardrobe or kitchen cupboard in the whole house. Next we tackle curtains.
I've also realised that my husband tells me he is reading all my blog posts but I know for a fact he isn't. So each week I will add a fictitious post about him and see how long it takes him to realise. Lets start with, this week I caught my husband buying size 13 stiletto heels and a sequined XXXL boob tube off Amazon.
In COVID news its pretty fucking scary in a fair few countries, the US, the UK, France, Italy and Spain in particular, but still Australia is holding its own. National cases are at 6,013 with 460 in WA. Deaths now stand at 50.
Thursday 9th April.
Fuck fuck and thrice fuck, something really isn't right with Alice. To be fair she hasn't been herself since the whole Cha Cha/Beargina fiasco. The possible UTI never came to anything and no other obvious illness has shown itself but something is definitely off. Her eyes are dark and sunken (which is always a tell with Alice) ,her eyelids are hanging half way down her eyes like shes about to fall asleep at any second and her mouth is hanging open. Most of the day shes taking constant naps and bumping into things, then by late afternoon shes crazy to the point of mania and bouncing off the walls. Shes either stoned and zombie like or high as a kite or acting up with aggression and defiance. The saddest part is, this is almost normal for Alice when something is wrong. If the tiniest thing throws her out of balance then she loses the ability to deal with her NKH, her glycine then skyrockets and we see a decline in just about everything.
After a really rough few days I've decided that I cant wait much longer for whatever it is to show itself so I'm going to go with the theory that maybe we just need a meds increase. I hate raising Alices meds and for years I've given the bear minimum to keep her functioning. I know to most people that sounds like madness. Surely if your child needs medication then you give it right? But the meds used in NKH are vile. They have hideous side effects, they damage the kids guts and throats, they cause almost as many issues as they solve and many NKH parents don't give them at all as the pain and upset they cause the children just isn't worth it. But I haven't increased Alices dose in a long time and hes on about a quarter of the amount she was as a baby, so I'll give it a go and we watch and wait. #IFHNKH. Those who don't recognise this hashtag that is quoted daily in the NKH community, its for I Fucking Hate NKH. I created it about 6 years ago and its a rather sad claim to fame of mine. Right now its very apt.
The world is still crumbling as COVID runs rampant. America now seems to be in the biggest trouble, the UK situation is looking really worrying and Italy just cant seem to slow the body count. I'm getting what I think are the beginning of anxiety attacks at bed time and as such Im staying awake later and later. When I do sleep its full of dreams about things being out of my control or harm coming to my family. I need to pull my big girl undies up and get my head straight because we are only at the beginning of this and we have a lot longer to go, but I have to admit, I feel a little like I'm starting to drown. Maybe once you have a child diagnosed with a "1 in a million" condition that is so rare even the hospital staff who diagnose it have to google it, the realisation that you really can be that unlucky, leaves its mark. Since October 2011 I'm acutely aware that absolutely anything can happen, no matter how rare, unusual, random and bizarre. In fact it frequently does.
Friday 10th April
Alice continues to be weird and challenging and equal parts hilarious and awful at the same time. Her swearing is so bad now, that Im actually in tears over it. I have an 8 year old whose brain is really not her friend this week and is misfiring all over the place and if that isnt bad enough shes repeating "Fuck You Dick Head" like a bloody mantra.
It got so bad that told her that she can't sleep in my bed if she swears at all today so she says "Can I say Dickhead?", I told her "No". She says "Can I say Fuck You?". I told her "No". She pauses and looks thoughtful then says "I wont say Dickhead or Fuck You today and I can sleep in your bed, deal"? and shoves her hand out to shake on it. Honestly, Im just broken with it right now.
Then just before bed she sits next to George, who is quietly playing I pad and pinches him. She can't help herself, she just sits there continually pinching him and doing it more and more when he protests. I shouted at her that if she cant sit next to George and be nice then she needs to get the hell away from him and go to her room. Alice again looks thoughtful and ponders the dilemma. Even in her fried little brain she can conclude that being nice to George is something she simply can't get herself to do right now, so she just says "I think I'll go to my room". Shes so damn smart and yet her brain is so damn fucked all at the same time. My hearts literally cracks when she's like this.
National COVID cases are 6, 023 with 506 in my home state. 53 deaths for Australia as a whole.