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

Friday, January 7, 2011

happy 2nd birthday to lunatic john, yes hes 2, where did the time go

This time 2 years ago I was anxiously and impatiently waiting for Lunatic John to make his grand entrance into the world.  I rang DH all excited, “where are you”? I ask, well the news that followed wasn’t good.

DH had been sick all night vomiting, he had gotten food poisoning from a sandwich he ate in the hospital the night before when I had checked in, I was devastated as he would not be there for the birth of his son (by c section) so to the rescue was my mum, I was upset but not letting it get me down as I had been waiting 9 months for this very day.

So he came screeching into the world at 11 am, he screeched not cried, oh hes gorgeous, the biggest of the 3 weighing in at 7lb 8 oz, ironic considering he is now the skinniest little thing ive ever seen.  He was gorgeous, just unbelievably gorgeous. 

It was days before Dh made it to the hospital, I was actually going home the day he and lunatic john met by c section, On his arrival home there was excitement and joy but not for one little boy, on no, he isn’t staying here taught Mr Fabulous to him self as he tried to push Lunatic John off my lap onto the floor, Oh dear, were in for a very long settling in process.

Well on his first birthday, his brother still hates him, poor Lunatic John is so ill we could not celebrate on the day, he is in and out of hospital as his weight plummeted to next to nothing from the winter vomiting bug, trouble was he hadn’t much to spare to begin with, all sorts of tests were done, he is now under a paediatric team and is seen and weighed every 4 months even to this very day.  He has been diagnosed with hyperactivity and he weighs now 11, 1 kg, this is great although not very desirable for his age and height.

So we didn’t get to celebrate his first birthday till 2 weeks after, never fear always next year, sure he wont know the difference.  A year had passed and he is still the craziest little thing running around, climbing everything, chatting non stop in 2 languages, yes he speaks English and Brasilian Portuguese, he is absolutely off his rocker.  He has scarcely slept a night since the day he was born; he has aged my self and his dad by at least 15 years in his 2 short years with us.  How we manage to get through a day is beyond us but we do and were still happy and doting parents.

Lunatic John is infectious, his smile is just to die for, which is good for him as when you are really at the end of your tether with him you just see him smile and you forget that you wanted to strangle him 10 min previous.  He is the best child and so intelligent and curious, he learns at least 5 new words in 2 different languages every day, I really forget that he is only 2 sometimes as hes just beyond his years.

So today jan 7th is his birthday, I swear that he is cursed.  We have a swine flu outbreak in our house, Lunatic John being the only one to not have it, if he did it would near kill him so he is gone to stay with his uncle for a few days, whom is fit for the nut house at this stage.  So yet again another day of his birthday we cannot celebrate until the following week, ironic as his due date was Jan 17th, he was born 10 days early due to the section, at this stage im really tempted to change his birthday to that date.

So happy birthday little man, I really hope your spoilt today with your 2 uncles, I hope you run the ragged and wear them well out, and I can’t wait to give you a big birthday cuddle. 

We have a massive birthday party planned for Jan 16th with all his little buddies and yes we will celebrate big style lol

For the rest of the news on the blog
No start date yet for adoption course, hse rang and said no idea when it will start, great, aren’t the wonderful, my daughter will be arriving when my other daughter moving out to go to college, great like that’s so what we want NOT

No news on the hse paying crazy Jane’s backdated dca, il get it, I will, they aint getting away with that one
                                         
Mr Fab is slowly recovering from swine flu but other than that he is doing great, still not to fond of his brother but its getting a bit better with them both, hes loving school and doing great.  He was re-diagnosed after his educational psych assessment with LF non verbal autism and is functioning at the age level of between 12 – 24 months, we are delighted with this news as is an improvement from 12 to 18 months.  The diagnosis is great news as means he gets to stay with his services and the HSE can’t get their messed up hands on him to destroy all the hard work we have been doing and that the services he is with have been doing providing for him.

Crazy jane isn’t so great, the Aspergers is really taking her over like some possessed demon.  I really wish there was such a thing as an Aspergers exorcism.  I hate Aspergers, give me autism any day.   She asks now for permission to even go to the loo, WTF is up with that, everything is a sin, EVERYTHING, she is sorry for every move she makes, its really driving me insane, we keep telling her, an accident is just that, an accident, why you saying sorry and fretting about it, we keep saying, its your house, just go the fucking loo already, stop asking us for permission, she needs to clarify and justify her every move with us, im really ready to explode, her fears are ten time more bizarre and irrational than they ever where, she is going slowly round the bend, and there is nothing that I can do, ive tried everything, ive begged every single service I can for help to the point that I rang social workers in tears and begged for them to help us.

They are giving her counselling sessions once a week, her local NYP have stepped into the rescue, they can see all I have been describing and they are starting basic social skills with her and will talk to social workers about further help for her, the social workers trying to get her speech and language quicker that their willing to give it, at last something is better than nothing.  We are struggling a bit with her but she’s still the best kid in the world so that makes it easier.  I also got told that the Doc ROGERS accusation had been investigated through the social workers visits and chats to us and they found no evidence to support his accusation and that they where happy to report that Crazy Jane is at he securest and happiest when at home with her family, so FUCK you doc Rogers, can you hear my engine revving up, run fat boy run lol na only in my dreams and taught but I will get him in court   :P