Saturday, October 29, 2011

My Fabulous Kids, Part 34 “Sleep”, I’ve missed you

So what’s it been, 3 years, yea that sounds about right?  Mr fabulous used to be great at sleeping while lunatic john was never great, that child would wake 4 times a night while Mr Fab would sleep from 7pm to 7 am no bother and with nothing to help him on his merry way.  Now it’s a total reverse, lunatic John sleeps just fine unless unwell, while Mr not so Fab is awake every 3 am and breaking our hearts.  I have no problem with a 3 am wake up, that’s fine, but at least have the decency to stay quiet and entertain yourself till you go back asleep, after all there is toys, dvds, books there for him.

I’m not a moaner and whiner unless I’m at the end of my tether, and I’m officially at the end of my tether.  Mr Fabulous as you know is non-verbal, yes, but he’s not MUTE.  My god that child can scream and whine, and as for this monotonous “ eeeeeeeeeeeeeeeeeeeeee”  at the top of his voice, “criminal” but this “eeeeeeeeee” doesn’t stop, it’s just constant, and then to add insult to injury, he starts banging on windows with heavy plastic objects while screeching this horrendous eeeeeeeee full force, WTF seriously WHY???

You try everything from nappy changes, food, drinks, medicine, removing a layer of clothing in case too warm, adding a layer in case too cold, changing the dvds, cuddling, giving out sternly, you name it we try it, but “NO” nothing, nada, squat, nothing restores sleep, just from 3 am the monotonous screech of eeeeeeeeeeeeeee and the continuous bang bang bang on the windows walls, doors, wardrobes to which your whole house is now awake.  Now add in naked child and smeared pooo or puddles of piss and piss drenched teddies and bed clothes and you officially entered those dangerous thoughts of driving out to the woods and leaving him there, ok, no never but I’d be lying if I said I never “joked” about it.  Unfortunately for me he is a handsome devil and has a cheeky grin that would melt the toughest heart and a chuckle of laughter that just draws you in to play with him even when your original thought was to “strangle” him, again, “joking words” there. Don’t go rushing to get the social workers, just yet.

I’m sure most people would think, ok Na not a chance, “it can’t be that bad” and you may say, oh hear she goes “moaning” again, but honestly this is what our life has become.  Now don’t get me wrong, we just get on with it and cope with it and are such a strong bonded family so even see the funnier side of it all and comment on how our zombie type looks are almost passing on the streets with little stares, but by god are we totally shattered and worn out.  Is it just a phase? Does he need to be sedated, or do we? Is he just going to be like this from here on in? Can we install a voice box with a volume switch? (“joke”)

So that’s the sleeping and night drama covered, now let me fill you in on the day end of things shall I. Morning we crawl down stairs, drag our asses around to get us and kids ready for school.  Once Luca gets put into his uniform, we employ a military operation to keep watch on him, for if we don’t we are cleaning a piss drenched Mr Fab, piss drenched window, window cill, pissed drenched teddies, blankets, floor everything.  It takes just 2 seconds to do it, and he covers the entire sitting room.  Some mornings we manage to keep our eye on the ball, but some morning we don’t. 

When Mr Fab gets home from school, he goes bouncing on the trampoline; this often results in a fully dressed to naked in 2 mins Mr Fab.  How we don’t know, but then just to add to that, we then see a naked Mr fab bouncing along side bouncing poop.  Great. Wonderful, marvellous, the military cleaning operation begins, Crazy jane grabs Mr Fab off trampoline, while DH grabs wipes and anti-bac spray and starts to clean trampoline while I get new clothes for Mr Fab and clean him.  Everybody is retching, sometimes laughing, and trying to avoid getting poop all over them.  This is where the equivalent of the straight jacket comes in, we then dress Mr Fab again in a nappy, briefs, all in one girls swim suit, another nappy on top |(as he pulls down to wee through clothes) and then an all in one swim/sun suit on backwards, yes people I shit you not.  Mr Fab spends his entire evening and night in this, we have no choice.  When it rains we are screwed, as Mr Fab cannot jump on his trampoline, he does not play with toys, he does not interact with other children, which means I must play with him, or bring him out in the car or to the shops (he loves the lights and food items that he eats on his way around) or to one play centre he just about tolerates, which is an hour away.  I’d love to bring him swimming but with 3 kids, one being Mr Fab it is impossible on my own and DH is working and allergic to chlorine.  We get 6 hrs respite a week, split into 2 days, and by god do we need those 2 days.  We do not get over night respite but I’ve expressed I really need it, so with the excellent services Mr Fab has, I’m sure he’ll get it soon enough, I live and hope (but he is still very young and just 5 years old)

So that’s Mr Fab in a brief nutshell.  We try everything, we do everything, and we just live and hope it will all get better, but we always remember, that it could be worse and we are very lucky with Mr Fab as he’s not the worst of them, were very fortunate that he is very intelligent, creative, fun loving, devilment streak, mischievous, playful, and a cuddly little boy.  He makes autism seem like a piece of cake most days, but he keeps us on our toes, that is for sure. 
As for the blogs story:

Crazy Jane has finally got psychology, OT and speech and language through the help of social workers (who I’d have been lost without) and is doing really well.  Social workers enlightened me that Dr Rogers referred us as he thought I was a tad crazy.  That I was one of those mother’s that wanted ill children, you know those psycho mums who pretend their kids are sick just so you have a purpose in life, well when I heard that, I hit the roof, thankfully the social workers couldn’t have disagreed more with him and sent a report saying he was way out of line and that they were releasing us from their services and have referred Crazy Jane to appropriate services where she could get help with her issues, which they see she had plenty.  They also praised us for all we do and are doing for her and for not giving up fighting for her even when Dr roger’s did this to us and couldn’t praise us more as parents, up yours Dr rogers, your freaky, dangerous little creepy bastard.  Isn’t it mad that you have to endure such trauma and ridicule just because someone with power abuses it and won’t be told he’s wrong.  He’s such a wanker I tell you. 
Lunatic John is now in play school, doing really well, still anorexic skinny but healthy and happy.  He is now officially older than his 5 year old brother and is now the boss of him.  He is great though as he warns me what Mr Fab is doing at all times, and steps in to stop Mr Fab in his tracks.  I actually forget that Lunatic John id 3 years younger than Mr Fab; I think Mr Fab will always be our “baby”

There is no signs of any spectrum issues or autism traits in Lunatic John, at last a typical child with nothing wrong with him, we are delighted and the comparison to him with both Crazy Jane and Mr Fab is unreal.  He’s so independent, able, capable, willing, easy to talk down, mild tantrums, logical, understanding, etc., the difference is unreal.  Now if he’d just gain some weight all would be wonderful. 
Mr Fab’s  guide dog will be here very soon, we cannot wait, I really hope this dog will be a bit turn around in our lives, we need a miracle and I hope I’m not expecting this dog to be all and more lol.  We also have some new plans up our sleeve which il fill you in more on later.  We have had to put the adoption on hold for a while, we will wait maybe until Mr Fab is a lot older and more settled and behaviours are more under control, we need to be 100% functioning for the adoption and were on 20% at the min, we will do it though J