Sunday, February 28, 2016

Been too tired to.blog



August - Feb  it's a long one folks

So August you where an absolute bollox, hello September

Ls Inhome worker has left. The search for a new one starts, this was a massive blow to us and a new one will be so hard to find

So L isn't adjusting to new transport,  hello, did I not predicted this. The boy no longer sleeps at all, he doesn't take it out on anyone but us either, nice
Aggression, angry vocalisms. Destruction you name it. L is now being referred to.a psychiatrist for medication management, respiadone, melatonin and phenegran.

Twins are loving school and loving going on transport, they are shattered by the time they get home, they scream to go to bed at 4pm ish which suits us and L is home than, they don't go asleep at all But enjoy the chill out

M has been unwell a lot since a baby always requiring a drip if catches a tummy bug. But this was a really bad bug, he puked brown stuff, ended up in a bad way, more tests being done.

Em is becoming less clingy and more social. Yay she's gone from one mega cling on to more secure and independent

Teen is her usual charming teen self, doing OK in camhs under new counsellor
Still driving me nuts but what teen doesn't drive their parents nuts

R still fighting for attention and having a lot of temper outbursts, horrid Henry crept in to his ipad and has him doing things like scribbling on walls and breaking things, and than blaming everyone else for it, think i need to spend more time with him and prioritise him a good bit poor kid, I don't blame him or us but do blame the stress were under.

October.
Still no inhome worker For L
Nothing much has changed. Same old same old, Mid term killed us, my autie kids aren't fans of school holidays
Teen doing great, boy friends, discos. social events, drinking (small amounts) but social life going much better and confidence growing. Still the odd dips in mood and still the usual teen shite but much better
R doimg a bit better too, horrid Henry is barred from TV/ipad screens

November
Another a&E trip with m, over night on drip again, poor baby very washed out, all getting excited for Xmas and putting their orders in, we trying to spend more quality time with kids (even through the tiredness)
L and twins still not sleeping, sleep deprivation still high but we're surviving. L seeing psychiatrist. I get a phone call one night from respite, L ok but had an accident, ambulance called, get to respite asap
I had to leave a toddler recovering from an asthma attach with his stressed anxious teen sister to get to L.  Teen was not in the right frame of mind but G was out and my mum on holidays, I had no choice but to leave her.
Got to respite, L had choked on a curtain ring and had to have it Brought up by the heimlick monover and brought blood up with it also, ambulance happy L was OK and diddnt need to go A&E but respite insisted I bring him home, eh I'm on my own with 4 children one sick and one having an anxiety attack, hubby is 2 hrs away from home
Took L home and he settled, I was pulled in 3 directions, respite came to take L back, I was happy to leave him home as hubby on way, but than L kicked off, punching windows, headbutting walls, kicking walls, back to respite he went, I'm very unhappy with incident and treatment and the fact they sent him home when he was fine and cleared to stay by paramedics

The search for an inhome worker continues, several apply but none I like, I'm qualified in bla bla bla, I've done bla bla bla, yes but your not qualified in L, L needs activity and adventure not structure and discipline, I get pissed off and advertise on face book, again lots of applications but one stood out, I asked to her to come to house, I instantly like her and know she's the one, so happy. She starts Dec 26th :)

December
Well now heres a month of torture for ya
Started ok, the usual, December is a rough time for us esp with long school holidays so we gotta plan and put survival plans in place.  Every day of the holidays is planned amd scheduled. There is no room for error or lazy days, it's all go go go

So we plodding along than the night of Dec 21St I get a phone call at 5.40, L had an accident and was in hospital and I needed to get there asap, so in the car and straight to hospital, L lost the top of his finger in a door in a restaurant, he had to have plastic surgery to fix it as bone was exposed.
He was kept over night and operated on first thing next morning, Jesus the stress of keeping bandages on, L had to have a mild sedative to just have it examined.

He went under sedation and they only applied light bandages, I said he needs that casted, no hel be fine just keep it clean and dry, they put a boxing glove type bandage to reinforce it. We where only home an hr and he had it off and was biting the finger, straight to gp, who sent us straight back to A&E, it was approaching midnight and we had not slept in weeks, we where horribly stressed and exhausted, the hospital was useless, arrogant of autism esp of Ls severity, they would not listen to us, reason with us, nothing, I had to demand paediatrician and plastics to come see finger, we wanted it casted and they where point blank refusing, arguments started, L started punching staff (I let him as he was doing what I wanted to but couldn't lol)
Eventually they casted it and thank god as we couldn't have managed the injury otherwise.  It was an impossible injury even with cast, stress in this house was never so high, me an hubby couldn't cope with each other and we normally rarely even fight.
Massive complaint lodged by us re treatment that night in A&E

L had to go under sedation to get cast off after a failed attempt the day prior while in full senses.  Cast off meant torture for us
L tried everything to bite the finger, bang it off everything etc, it's was a pure nightmare.
Me and hubby actually split up as we couldn't handle the stress of keeping bandages on. We just couldn't cope with each other on top of everything else.  We shocked several people as even though angry with eachother and pissed off people diddnt know we where fighting or split up as we where just our normal selves lol.
It was more a temper split than a real split, we diddnt know that at the time though as felt very real to us.

G had to sleep with L in his room as he would wake up amd try ram his head through the window/wall or bite his finger off. It was a horrific time for everyone

Xmas was ruined and although we tried everything to make it good good for k and Rs sake and twins but they had little understanding anyway. We where consumed by stress and overwhelmed by autism

I felt very let down by my services as they offered no extra respite to us and no additional inhome nothing, bad bad form on their end, massive complaint lodged

I recently found out L has no HSE funding so his respite is not secured nor does he have any resources when leaves school as a result, I'm infuriated, I let it all out in that complaint email, now as a result we are getting a business plan together to be submitted for funding, a local td also helping me out with it. Also we are looking for additional respite and crisis respite.

On a good note. L's inhome worker started and it's working like a dream, he loves her and she loves him and he always has great fun with her, even though she started with him while he was at his worst it diddnt scare her off and she loves him, has him spoiled which is exactly the way it should be. She's firm when she has to be and fun all the rest of the time, even k and r love her, we have been so lucky to find her and L is very very happy

January
Finger drama continues, stress continues
More stress as applying for adaptation grant. Jesus I'm dreading it, da application gone in for teen, again dreading it, fighting for additional respite, again really big fight on my hands
More fighting for what your entitled to, when does the fighting ever stop

February
L had us in utter tulorture with his finger till February, all is calmed down now re finger, now drum roll please
M rushed to hospital, literally awake asleep if that makes sense, he caught tummy bug, puked blood, straight to A&E
Dr's rushing round working on him, he was slipping into very deep sleeps, his blood sugar plummeted to 1.3 ad his key tones where raised. He was on drips everywhere and monitors everywhere, very very scary but picked up again that night thank god.
He came home (I had to beg, he was fine though) the next day, there was no point keeping him there as he was getting bored stressed and trying to climb out of cot and pull out catheters etc He was better off recovering at home.

While in hospital I read m's hospital chart, I noticed a letter which infuriated me, it diddnt paint me in a very positive light and was utter bull shit, re the time m fell off the bed at 6 weeks etc I lodged yet again. Massive complaint which was taken seriously and rectified swiftly and appropriately thank god, no hard feelings but twinss now under Ls paediatrician which I've wanted for the last 3 years anyway, mission accomplished and a lot straightened out and aired in a positive manner.  Never ever take shit from no one folks EVER but don't shout and roar, put it in a professional type letter :) that's what I do
M home a few days when he spent all night and morning screaming in pain, I called West doc but they called ambulances because of m's history of rapid blood sugar plummets etc
We get to hospital and he like antichrist climbing all over place, home again grrr but to keep an eye on him
He took a few days to calm down, as he ripped the lining of tummy food was really hurting him poor baby, plain food but high in carbs diet was the cure

So now we're here
Gathering all needed for adaptation pain in my arse grant, da application is with sw, business plan ready for submission

I've been sick with vertigo, L has started swimming with special Olympics, k is now volunteering with special Olympics
Me and g back to our usual selves, L leaving finger alone, m getting bloods done tomorrow to assess urgency for temple Street as think he has Ketogenic hypoglycaemia and I'm booking a holiday to lanzarote as respite with my mum k & r
G will go on a holiday with his dad for his respite as we can never go together as kids need one of us here at all times cause we always got some sorta emergency happening, I love our life lol but yea it could be much worse. Gotta always hold sight of that.