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.

 




Sunday, August 9, 2015

august you will be the death of me



June was good to us folks, little to complain about at all, July and august however, not so much. 

June was peaceful, we survived and got through it as normal, tired, stressed but this is our normal.

July wasn't to so bad, we have visitors down and where rarely home, we went on a lot of day trips and over nights and made the most of it,  the end of July however, well I never thought id survive the last week of July and start of August.  July provisions came to an abrupt end and all hell broke loose, the crèche where also on a week and a half's holidays, DISASTER, L's in-home worker was also on 2 weeks holiday DANGER. 

The twins where on a mission to fit as many tantrums and melt downs into this week as they could find humanly possible, this sent L off his trolley and into fits of rage and aggression which sent the rest of us into a nervous breakdown.  This was 2 weeks, 2 very long weeks of hell, I genuinely do not know how we survived those 2 weeks.  All the meds and all the ot s&lt and physio and all the activities under the sun was not gonna fix it either.  We literally had to grin, bare and try block out the noise.  The full blue moon wasn't helping matters either as the little sleep we grew accustomed to became completely non existent.  We had 2 birthdays in between, the twins and L's, we suffered through the days and tried to false smile it for the sake of it. 

Family, who'd have them

My poor sweet L, I know he's severely autistic, I know he has no understanding, I know he doesn't like interaction I know all of the above but he is my special little boy who almost didn't make it to this world due to a threatened miscarriage for 4 months.  I'm sorry but this needs to be celebrated and not one family member on my side bar my mother remembered his birthday, not even his godfather. 
I'm deeply upset as is unacceptable.  My family are not close anyway but yea disgusted. L does not deserve that.  Its like he doesn't exist sometimes, no one cares as they cant relate to him anyway.  They remembered the little cute and cuddly autistic twins birthday but just not L's.  Thank god he doesn't even realise what he's related to . 

I developed  some crazy rash on my neck like liver spots, I went to the doctor. How are ya M, well ya know yourself doc, you wouldn't jump out in front of the oncoming bus but wouldn't mind if it hit ya either type of thing.  M omg your lucky I know you ya well enough to know you don't mean it, well now doc, do I not mean it ????  I think I kind of did lol.  Got bloods done, still never rang for results to this day but sure I'm still alive and kicking and I'm sure they'd have rung by now if I was fucked.

I forgot to leave a very important cert into social welfare, its a 6 monthly cert, completely forgot all about it, money stopped for 3 weeks, thanks cause I can afford that, had to go sort that out.  SW well now that's something you shouldn't be forgetting, moan moan , well sw I doubt you'd have remembered either if you where to go through what I went through in last 7 months give me a poxy break, they where so good after that, I told them all the shit I've been through and that I'm lucky I remember my own name these days, and with that all resolved and all sympathies, I always find if your brutally honest and don't roar at them they will help you more, and they did and I'm very grateful as I was broke lol.

So than I get the lovely news that L's bus has lost its tender and went to a new company, WHAT, and I heard through second and third party too.  New fight, straight onto TD bus eireann department of education and department of transport.  If L doesn't get his bus driver and escort restored there will be hell to pay, he will go demented,  How will new people cope with L and his aggressive behaviour and self harming.  He is already to face a new teacher, new classroom, new peers in school as moving up to the next level room and now this change on top, omg I'm dreading September already and I'm not even finished hating august,  It is imperative that L gets his transport and escort put back to the way it was for everyone's sake.  Constant fighting, it never ever ends.

So yea between stress, sleep deprivation, fighting for services to be restored, being broke and all the rain that's hindering all of the above bar transport I'm in a shit heap

yea I wouldn't mind a smack of a bus some days,  most days I feel like I got a smack of one anyway with the way fibro leaves me feeling. 

too tired for life but yet ill smile, be my bubbly charming self and get through it all


yawn




 

Sunday, May 31, 2015

4 seasons in one day,and that includes the weather


April 2015 
Holiday to Portugal, M&Em dx with autism and ID

May 2015
Oh what a month it has been.  Appointment hell, sickness hell, weather hell and financial hell

I’m finding it a very financially tough month, money is literarily in one hand and out the other and I’m still on the back foot playing catch up since my much needed holiday.

 I am also consumed with appointments this month.  I have L’s peads and my ct scan on the same day in a county a half hour drive away.  I have L’s psychiatric assessment this month (an hr and half drive away), my own app to see consultant for this fibro shite, R has a dental app and a eye app to have his eye patched due to a very bad turn in left eye, we also found out last month that he is partially blind in his left eye.  K has had 2 apps also.

We have had the vomiting bug in the house for 3 weeks now and I’m exhausted. G had a massive allergic reaction to what we assume to be horse hair, his hands blistered like bubble wrap and burst leaving open wounds bleeding on his hands, with this came a massive asthma attack, the poor guy was in so much pain and yet he’s battling through loading washing machines, dryers, dish washers, hovering floors etc, I feel so sorry for him as he’s in so much pain, than wham the vomiting bug lands to us ALL.  M has also been to the GP this month with a mystery illness, he keeps holding his right ear yet dr cannot find anything in it, possibly just a sensory thing. He also had a sugar drop episode after his vomiting bug and was weak with high temp with that charming keytones smell; he shifted from near lifeless to hyper after sugary drinks.  I brought him to gp and she was like, he’s fine, send him to crèche, he might as well be jumping on their tables as to jumping on yours (he has a serious climbing issue) so I did.  I got a call from crèche a few hours later to take him home after a mysterious rash developed after a fit of temper that disappeared again within minutes; the child is a bag of weird at times. I took him home and again hyper as hell than all of a sudden flat and weak.  I thought at one point I was going to end up in A&E but we held off and he seems ok since. 

 M was to have an app for his dodgy toe, again an hr and half’s drive away and I was to be there at silly o clock.  I’m just too tired for it.  I cancel it, oh I’m guilt ridden but just cannot bare it.  He has a weird overlapping toe thing, now in my heart I know I should go, but I also know there is nothing they can do, it does not affect him in any way and I’m near sure it will sort itself out eventually.  I ask advice on face book, this toe thing is quite common apparently and low and behold nothing can be done and you end up with several appointments just to be told this in long run.  I take M off the app list; I just have no time for unnecessary appointments.  Isn’t it terrible though that you have to cancel appointments as they not a priority over all the others.  It’s exhausting trying to prioritise and make all the appointments you have with each different child.  The guilt doesn’t help much either. 


Just as we think we might have an easier week end, the first in 3 weeks, Ryli puked at 4am.  Here we go again, oh can this month just end already, we are so tired and I really cannot see any more shit and puke, the clothes washing, floor mopping, bed clothes changing and showering children is endless.  We are now officially into our 4th week of sick children and sick us. 

L went to see peads, in the 1 and a half hr wait we had to hide a plant and a bin that was over stimulating L, we where exhausted from him bolting up and down the corridor, at one point he found food in the canteen and G just let him sit and eat it as G was just so pissed off and fed up running.  They know L can not tolerate waiting rooms, small children, noise, busy bright fast moving environments, and we had it all including another child pissed off waiting in complete melt down. What JOY and dangerous territory for L.  Oh boy did I miss D but couldn’t bring him as my app shortly after L’s.  Finally they see L.  They very happy with the difference respiradone is making to L, he now needs bloods and he has his psych app next week. 

My ct scan was quick and painless, thank god, went home with migraine and feeling sick, I continued on this way all night and most of the next day.

My Consultant app: well M there is nothing we can do about the pain you’re in.  You can’t tolerate even the lowest dose of Pain meds so we actually can’t recommend any, you have fibro and it’s causing you great stress and pain but the best I can offer is paunston as we know you can tolerate them.  My biggest issues are stress attacking my body and as my stress is life long I just got to get through it.  Yep knew that already, consultant gutted as he really wants to help but cant.  Just my life and the shit that comes with it, you just got to laugh really, but apparently I’ve little chance of dying of a heart attack as that’s the one part of me in great shape lol.  Yay, a positive.

I ‘m starting to pull my hair out again, my scalp hurts so bad as im picking chunks out of it, grrrrr I’m trying so hard to stop but the damage is done as I don’t realise I do it till I see the blood on my fingers, ah yes, stress, stress stress and more stress. 

PS I still hate teens

I have a lot of other stuff going on in the background but sure who hasn’t.  I’m feeling the stress but keep thinking June might just be my month, but I think this about every month so I really should just know better by now, but one can hope. I feel like May has been a misery from day 1, weather is shit, vomiting bug and other ailments plagued us for 4 weeks solid, M is a tantrum throwing little bollix, sorry but sometimes you just need to say it as it is.  E is uber clingy and needy that she’s sometimes just painful, K’s social life can be hard to keep up with and than usual teen stuff that drives you to want to be an alcoholic but than you don’t have the energy to put the effort into becoming one, ok sarcasm but yea you do wonder at times.  After school activities are just painful as your so tired your ready for bed by 6 but that’s when all their clubs start, dancing, football, boxing, guitar yada yada.  You put your healthy eating and exercising plan in place, but you never get it started yet the pounds just pile on and your clothes get tighter.  I still have a week left of this month and I’m already looking for survival tactics to get me through this last week.

I had money owed to me since April, this money used to come after the 16th of every month and that was hard enough to handle, now it comes after the 23rd of every month, its financially killing me as it’s a lot of money that I pay out weekly on in home, I get some (not all) of it back in a monthly cheque, since G finished work we took a huge (almost 3 grand a month) financial hit.  It’s so hard trying to make it through till that cheque arrives, than you have to lodge the bastard and it takes 3 working days to clear, cheque usually arrives on a poxy Friday like.  FFS it’s starting to push me to the brink and I end up arguing with the service provider almost every month, and my consultant says I need to avoid stress haha yep.  You feel like your begging at times, your not, this service is provided as there are little other services on offer, it’s a huge help but now its becoming a financial burden that its almost not worth having this service.  Your stuck as you can’t afford it yet you need it, they offer some of the money back but it puts you under serious financial strain waiting for the money that you land yourself with further problems.  You just cannot win in this life.  I finally got the cheque but the stress involved that day of getting it, I’m surprised I’m still standing.

Just one more week left of this shitty month, one more week

We made it, I survived this shitty month.  Last app done, L had his psychiatry app, we brought D and both where good as gold.  They are happy to leave L on respiradone and put him on a trial of phenergan to help with sleep.  They where so impressed with the dramatic changes in L. 

So the dog decided that he too needed some extra attention this week and decided to choke on a biscuit he robbed off the floor when M flung it.  OMG seriously, there he was gagging and coughing gasping for breath, I had to Heimlich him and slap his chest hard to get the biscuit out, thankfully it came out but he was looking a little shocked after so emergency dash to the vet.  He got 3 shots (was due his booster and flee/worm anyway) and an antimilitary for his troubles and his anal glands squeezed.  Never a dull moment in this nut house

This last week I’ve walked and jogged 29.9k and although I ache I’m enjoying it.  I’ve also lived on 1200 calories a day for the last week and I’ve lost 2lb so at least that’s kept me sane slightly. 

Oh please June be good to us










Wednesday, May 13, 2015

grieving


Now what’s wrong with me  august 2014

 Summer school holidays are a painful time for any autie mum.  Change in routine, schools out and there are long ass days to fill. This holiday had a lot of good patches but august wore me out as L had no school at all.  His temper is now fierce and he does not seem to need sleep.  He’s just hyper, exceptionally destructive and full on 24/7
Hubby working in the background almost having a nervous break down as R, Iz and K can be very hard work also.  Than add in the twins, pure chaos.  I’m not joking we barely survived.  I was so tired and consumed by 6 very demanding kids that my walks, runs, swims dwindled.  Hmmmm a little bit of weight crept back on, ok I can handle that, and I’ll walk it off in September. 

Back to school
Thank god L is back to school as I was fit to be signed in.  September i'm still tired, more weight gain, hmmmm October, tired, again more weight gain and sore.  My body was just weird, I was sore like I had been hit by a bus, I struggled to get up every morning, and I was falling asleep on the couch by 3 every day.  I’m really not happy as I was in a great place in May and June.  What is wrong with me boohoo. 

November and December   serious stress ahead.

10 2014 grieving

The older L gets the harder it’s getting.  The temper tantrums are so severe he is biting chunks from his arms, smacking his head severely off the ground and windows; it’s heartbreaking as we cannot do anything to help him.  It’s torture to live with.  The asking for help is falling on deaf ears too.  We after a serious round of fighting received a weekend a month respite and more in home weekly, this is making a huge difference to our quality of life. 
Not only can we not cope but respite, school, and transport and in home cannot cope with him either.  They order a psychological assessment to be done, they highlight ADHD.  L is put on Ritalin to try combat his behaviours, OMG never again.  He ended up in hospital after his first ever tablet with convulsions, twitching, everything. Drs said leave him on it thou and see, we did, the hulk, the boy turned into the hulk, it was mental, he became so aggressive, dangerous, impulsive, all the things Ritalin should be stopping, the complete adverse reaction.  We stopped the meds as no one, and I mean no one could cope with him. 

Nov / Dec 2014
My dad and my gorgeous Iz
We are grieving the loss of 2 very important people in our lives, 2 very different forms of grief.
Our gorgeous Iz is moving home to Brasil.  We are heart broken, reasons and circumstances beyond our control but she is with her family and that’s all that matters.  She hates it there and cries every day to come home, she misses her non biological siblings so badly, and we miss her, I’m still not able to handle that she is gone and is affecting k very very badly.  A huge hole in our heart is left but we Skype every day, thank god but I get so upset knowing she is not here with us, she will be again in a few years but for now Skype it is.

Xmas is looming were trying to look forward to it, its so sad as Iz is not here for the first time in 5 years and xmas isn’t exactly all fun and games, long holiday period from school does not sit well with L and services less as holiday period.  We usually have melt down after melt down and K and I and Iz suffered a bit of family Xmas spirit due to this.  

Than my dad took very sick, one minute he was in a&e and next he was in intensive care, it was so sudden, my dad passed away dec 21st 2014, you cant imagine what it is like to loose someone at this time unless you have been there.  Trying to pull yourself together to try having some sort of Christmas for your kids is horrendous.  Than add autism stress and typical teen shite and a very attention craving 5 year old and the grief of loosing Iz on top, I really don’t know how we survived it.  Esp. with L’s behaviour at is maximum worst.  Don’t even try imagining what two possibly autistic toddlers were like on top of that, and a hubby working full time with a very stressful job.

L was horrendous, life with L was near impossible, after almost a year of me ringing peads etc, we decide to try a new med, L was so bad in the peads room the pead finally saw what we where living with,  He is now on Respiradone and it is a miracle drug for L.  He is happy again and calm, smiling, sleeping (on and off but better than not sleeping at all like before the meds) L is now to go see a psychiatrist and be assessed for new meds with the respiradone.

Life was getting way too complicated for us at home, I was exhausted beyond belief, G was working 5 days a week, 1 in Dublin involving a 6 hr commute and an over night stay, he was at breaking point, I was at breaking point, something had to give, G’s job was the prime suspect.  G applied and was granted for 2 years carers benefit.  This would mean our finances would take a huge hit and we would just about make ends meat but it was becoming impossible for me on my own and for him to carry on the he was. 

Jan 2015
Since taking carers leave we do make ends meat but it’s tough, but yes, it was the best decision we ever made.  G is able to attend appointments with me, do the school runs to give me a break, we get to spend quality time as a family together, were rarely home, we have the kids going here there and everywhere and just trying to have as much fun in our days as we can, Its tough financially but id never swop things, were just so happy. I never truly realised how busy my life was until G was home to help me and split the appointments, school runs, after school activities and house hold crap that comes with every day life.  I genuinely look back now and just can’t understand how I managed it all on my own, it’s just mental.

Feb 2015
I had a permanent creek in my neck since December, I put it down to living in hospital and travelling and hr to and from hospital every day sometimes twice a day when my dad was there.  I had also had insomnia so thought the pain down to that; I was almost falling asleep at the wheel of the car, I also had this itch all over my body, like burning, it was so bad I was bleeding myself from scratching, I cried when the gp said it wasn’t some sort of scabies, at least you can cure scabies.  The itch was the worst symptom and was driving me clinical. The Gp prescribed the usual, paunston, didn’t work, define, didn’t work, antihistamines, didn’t work  One day I went in so much pain, my actual Gp was there not the other Gp that’s there cause your own is booked solid, she was like straight to hospital with you.  I had the weirdest headaches, like hot than ice cold flushes in my brain, I couldn’t move my neck and shoulders and I was so sleepy.  The hospital had a specialist on and he told me it could be one of 2 things, fibromyalgia or MS and id need an mri and lumbar puncture,( still waiting on both lol),  I was put on these tablets called lyrica, I agreed to the lowest dose as I’m brutal for tablets and apart from eltroxin and b12 I take nothing.

March 2015
A second visit to specialist and he was happy to call it fibromyalgia and treat for same, he still wants to test for ms but just so they can rule it out and wants me to have a ct scan also.  One of the days G was in Dublin and I had to get up at 5 am to L, he was screaming as usual, I got him sorted and I went back to bed.  He got up again at 6, as I was coming down the stairs my mind went blank and either I forgot how to use my leg or my leg just stopped working and I fell head first down the stairs, I smashed my face quite badly off a stair gate than tiled floor full force.  I thought I was ok and carried on although in a lot of pain.  I felt woozy but thought was normal considering, I went to see specialist the next day, he wasn’t very concerned although I was feeling woozy again and a bit sick.  The next day I couldn’t stand, the room was spinning and I felt so so sick like I could throw up.  Even laying in bed the room just kept spinning.  I rang my Gp, stay in bed you have concussion.  Yuck I never want to experience that ever again; even thinking about it makes me feel woozy,  I stopped taking the lyrica but am now left in pain every day and my arm feels like its disconnected and stops working from time to time, I also suffer horrid tiredness and insomnia is back,  My neck pain comes and goes, but the itch remains, something to do with nerve receptors yada yada butI’d rather be in pain than whacked on tablets loosing all control of my mind and body, my life is too busy to be off the ball for even a split second.

April 2015
Ps I still hate teenagers
A friend of mine invited me to go on holiday with her, at first I was like, oh I wish, not a chance as over run with appointments and bills.  Than I thought about it some more and was like hmmmm maybe, than next thing I knew we where booked and ready to go.  The Algarve here we come.  Didn’t realise how much I needed this break until I took it. I knew I was coming home to twin’s dx, L’s psychiatric assessment, K’s stuff etc; so I made the most of it.
We had a great time, beer cocktails and drinks by the pool, stroll to the beach and back to the pool.  Total recharge, I’ve decided I will be doing this every year from now on. 

Normally we go away as a half a family unit  ( Me, G K Iz and R just) to Germany or somewhere in ireland every year to family, we pack so much in while there for the sake of K Iz and R that were exhausted and needing a holiday by the time we get home.  Its getting harder to do this thou and financially impossible too.  We need to cut it to every 2 or 3 years now.  My self and G decided we would both take a separate holiday each year, me with my friends, him with his friends than mini trip throughout the year finances depending.

This pretty much brings me up to date to my first blog post, How the hell did I get here, one pox of a journey, I’m not sure how I wasn’t or haven’t been committed yet or committed murder even.  There is so so much I have purposely left out, so much I forgot and so much more my brain just can’t process to talk about it.  Life with k is near impossible but again she’s a book’s worth, R is the easiest of all 5 and now this new autism journey is beginning I’m just waiting for what it brings.  If I’ve survived the last 8 years I’m sure there is more years in me.  I hope……








so many kids, so little time, and now a dog


Life with busy pre toddler (new borns, 3mths to 12mths) twins and autie boy

Life is a rollercoaster you just got to ride it

Sweet Jesus, make it stop, make this merry go round stop.  Yep this is life in my house.  Twins as babies is the easiest and most beautiful experience you will ever have.  Life is ok and L is in school 5 days a week from 8am till 4pm (transport hours Inc) and than goes on in home from 4pm until 8pm mon tue and fri, and is on respite wed and thurs. L is so happy with this as are we, because with confinement  is dangerous, like impulsive and physically strong and aggressive under duress, all this time out of the house allows him to tolerate home life much better and he is not really around 2 busy pre toddlers that much.  Life is ok not perfect but ok.  L is also gone on in home 7 hrs on a Saturday but is home all day Sunday.  We get to be with the babies when L is gone and on Saturday we leave the babies with my mum and head off with K R and Iz for the day.  We also sometimes leave the babies with my mum on a Sunday and either just head off with L or with k L Iz and R together, constantly trying to get in as much quality family time as we can, yet at a financial expense and renders us  exhausted but we do it and we make it work. 

Babies get a lot of floor play and are exposed to sensory play as much as possible.  They are super glued to my hip constantly, worryingly so. The paranoia and autism concerns are there so we are on the ball, we know all we have to do and should be doing and we know well what to look for and encourage more of. They are not meeting their milestones, were concerned but we remember they are preemie twins so try not to overly panic.  E has babble but M does not, they both smile and respond to cuddles, kisses, affection and they had limited but do have interactive skills.  They hate being outside of the house, they really hate it, they are home birds, this does not sit well with me and I’m the complete opposite.  They scream to go home; they hate people and esp. groups of people.  If my friends come round for coffee they scream to go to bed.  They will noT go to anyone but me G K or my mum. 

At 8 months I’m not happy and place the on the assessment of need, I know in my heart something’s not right at all. 

WERE NOW TODDLERS (12mths to 18mths?)

Dangerous territory for L, there on the move.  Ohoh L not coping at all.  What the hell are we going to do G, we need an extension.  No money for one, don’t want a huge bank loan either, what are we going to do??  We have a huge sitting room, its stupid big, let’s split it in 2.  We take out a loan, not huge but not small either but we’ll manage.  After about 2 months it’s ready, L has his very own chill out room which doubles up as a play room for all the others when L is not here, its working perfectly. 

Exhaustion is starting to kill us as babies stopped sleeping and L doesn’t ever need sleep anymore esp. if there is a poxy full moon,  Sometime L sleeps but babies don’t, than babies will sleep but L doesn’t, its painful.  Something’s got to give, we finally get awarded 1 respite weekend a month, thank god as me and G use this weekend to recover as we do be fit for nothing.  We shout a lot for help and we have good services and team behind us who listen, thank god for them too.

E is sitting but M is not, skip forward to E is not walking but M is cruising furniture.  E gets sick and recovers in no time but if M gets sick we end up in hospital every time. E is on her bum yet now M is walking.  Most of the worry and focus is on E.  Both twins are on a non dairy and non soy formula due to intolerance.  

ASSESSMENT OF NEED

Twins went for AON, the outcome was Global Developmental Delay to be continually assessed.  They receive regular OT S&LT, Orthotics, Peads apps, Physio; they have a nurse come see them every fort night too.  This is part if the continual assessment for AON and they meet up as a team to discuss outcome and progress.  I started twins in a crèche 2 days a week which is doing them the world of good.  Part of the bigger problem is they are stuck to my hip and want no one else but me, autism is mentioned all the time in relation to them.  I hate their paediatrician but she’s good at same time, she is testing for genetics and metabolic disorders also. 

M is so bad health wise he’s forever in hospital.  He’s very under weight and again turns yellow the odd time.  When he get’s sick he is floored very quickly, something to do with key tones, white blood cells, glucose etc.  Test after test is done but nothing showing so is a mystery. I think I spent more time in hospital than I did at home for his 2nd year of life.  He was permanently in hospital on drips etc.   Could be very frightening as he looked so lifeless while E who was the one every one worried about when born was actually the stronger of two.  We had the preemie curse; they caught every bug / infection going. 

Ah yes the fighting AGAIN
A fight for DCA, a fight for medical card, here we go again, but actually not near as bad as the fight I had for L.  It was hard to get and did cause serious stress but we survived.   We had a few other fights along the way and much heartache but again we survived. 

So while I can say having twins was the one of the best experiences of my life it’s been very tough and exhausting too. Esp. when L is acting up something terrible in the background and teen hood is a nightmare and teen lucky to be alive most days.

R has a few little bits and pieces going on but the older he get the better he gets.

Back to L Nov 2013

Ah yes lets get back to L, where does one start, sweet Jesus what a time of it we have had. 
We get the call; we’ve been waiting on this call, woohoo we have been matched to an autism assistant dog for L.  We travel down to Cork, they are a perfect match.  A few months later I travel down to cork to do a weeks training with the dog (D), I’m in love with this pony, well he’s as big as a pony.  He is a black lab/golden retriever x.  He’s a lunatic, ah here you giving me this head case of a dog, he’s as hard to handle as L is, surely they made a mistake I thought.
He is food obsessed, hyper, attention seeking, and all the things L is.  I take him home half thinking I’d be sending him back.  After a month he settled down, he was the perfect dog for our family, well for us all except Jamie the cat, they hate each other STILL but starting to tolerate each other a bit, skin and hair flew at the start.  D sure doesn’t like cats. 

L and D have no friendly relationship together just a pure work relationship, I actually prefer this and this its better for us all.  I am now able to let L lead the dog himself so no attachment to me necessary, just commands from me.  This has given L so much independence from us and so much responsibility for his own actions.  D knows well what L is and is not allowed to do so sit’s on ground to restrain L if L is playing up or starting to bolt off, they are a match made in heaven.  When not working D is on the couch between me and G being loved and adored.  We could not imagine life without D; he is a member of our family and treated just the same as the kid’s lol.

D has been a god send as is forcing me out of the house on long walks every day.  We go for 5 to sometimes 10 k walks and I started running also. I love it, its giving me so much head space and breathing space; the clingons are at home with daddy and I’m just free.  I also change my diet and have lost 3 stone; we have all lost weight and are feeling so much better in our selves. 



new arrivals


I stopped blogging in and around this time as life got so hectic, I got too tired of life, tired of trying to keep positive and happy and raise 3 children in the process.  But at least I saved those blogs (I deleted all of them from the internet as just hated reading them, I stored them away on my laptop, so glad I did as re blogging them and reading back at all that madness now has made the twins journey seem like a walk in the park in comparison lol. 

Before I got pregnant on R we had completed an adoption course, we had plans to adopt an older girl from Brasil, and I felt it would be better for us as a family and good for K.  Low and behold I get pregnant.  When doing adoption you cannot proceed with an adoption while pregnant or until after you new born is 2 years old, ooops, ah well we will revisit this notion again next time.  Welcome to the world R 

times, dates ages not exact as i cant remember and this is taken from old blogs etc

So R was 2 and a half, time to revisit that adoption thing, we again started our course, as we needed to renew it as 4 years since last one.  We got half way through when a gorgeous Brazilian girl strolled into our lives, but the if’s how’s and why’s are irrelevant but in she came.  This child became so much part of our lives we forgot all the time that she was in fact not our child, so much so she just became one of ours and we stopped with the adoption again, we now had 4 children and we where very happy with our 2 girls and 2 boys.  For the laugh of it G lets have another baby, oh me and my bright ideas lol, Sure why not, R was just fine, mad but fine, he’s funny, hyper, NT it looks real good to go again, and now we have Iz too I don’t think I want to go down the adoption route, the stress is just not welcome, life’s stressful enough without the stress of an adoption, even thou it was a dream of mine for as long as I could remember. 

So to the Dr I go, she too thought it was a great idea, I got my script of clomid, bloods checked for thyroid and b12 and away we went.  Things looked dodgy but than I remembered I always got pregnant on the very last round of it.  And I did, 6 months later I was pregnant.  OMG it’s a girl I thought as I was as sick this time as I was on K, horrendous but great.

 L had been becoming very agitated out of the blue, it was daily, we where beside ourselves, what is wrong with this child, demonized.  L was starting to kick in severe tantrums and head butt windows and walls, punch things including us.  Like just because I was pregnant he decides to flip a switch in his behavior, are you kidding me L.?  We need and went to an excellent behavioral psych, He too is baffled by L’s sudden flip, and he decides we need to do a diary of sleep, mood, food, and behavior, routine you name it we needed to record it. After a few months we finally pin point it down to citric acid intolerance, L loved his oranges, orange juice, and pineapple etc, omg how are we going to sneak these out of his diet grrr. 

Incident 1: L escapes from play centre and runs into busy car park, I ran after him at top speed (L is fast) that night I had a bleed, straight to hospital, all good bleed stopped, but scan just in case.  I laughed and said sometimes I feel like I have 2 in there as I’m so sick and movements everywhere so so early.  Dr laughed sure you’d be feeling nothing yet really, well the shock, on that scan (my first) where 2 little beating hearts, omfg no way.  TWINS K screaming all over the hospital, my friend beside me just as shocked as I am.  I had to ask for a photo as knew no one would believe me if I said it was twins, G was like how, just how, no twins in our family, but that's the joy of clomid, I was so so happy.  I always wanted twins and was always a bit sad when id see only 1 baby on a scan, felt like clomid robbed me all the time lol, well not this time. 

Being pregnant on twins was serious hard work, and very exhausting esp. considering my age and 3 previous pregnancies and the madness that is my life with autism.  G worked in Dublin 1 night a week but was gone 2 days; it was starting to get very difficult with L.  His behavior got too challenging for me to handle on my own.

Incident 2: One night in pure temper he kicked me full force to stomach, back to hospital, all was ok but a social worker paid me a visit.  She said it was getting dangerous now and I needed to get some extra help, but from where, we put in an urgent application for respite, it was a fight and a serious struggle but we finally got it.  We also applied for transport to and from school for L (I was driving him 1 hr to and 1 hr from school daily), with the help of social worker, B of C and TD we got that too, again not before a fight.

RESPITE
Oh the guilt I felt, I had to send my child away so I could rest, what the hell kind of mother was I.  I knew I needed it, I fought for it but really, where things getting that bad.  I never forget his first respite night, I must have rang them every hour on the hour, and I even popped in just to say good night to him.  He was happy out.  He goes every Wednesday and Thursday night.  Now it’s like a second home and we count the hours till he’s going lol.  Life got easier, the pregnancy did not, ouch fucking ouch, I got spd, some crazy liver thing, some mental itch thing, and I needed a crutch and belt to walk, ridiculous. Get these babies outta me.

3D SCAN
I was told I was having two boys, I was so happy to have healthy babies but bummed out no girl, I was sick of boys, me and K where out numbered until Iz came an we didn't like it.  So 3d scan day arrives, the girl asks, so you know what your having, yes I said, 2 boys, she laughed, who told you that? The hospital I said, she said well I can tell you now, its 1 boy and 1 girl, omg the screams of us all, there was an army of people with us, my mum, his dad, my nephew, K, R, Iz, my friend and G
We where all so so happy, esp. K and G, they've wanted another girl too.  G took all the boys home and Iz, k, my friend, I, and mum went shopping hehe
A sea of pink and a tiny few of blue clothes where bought.

THEY’RE HERE
 I gave birth to preemie (barely) healthy (ish) twins July 15th 2012.  They where perfect, teeny tiny but perfect.  The joy, smell, cuddles, everything you love about a baby times 2, how lucky was I.  I thanked whatever it is I believe in (the juries out) every day for these precious gifts.  Having twins in the beginning was easy and because they where my last I made sure I was off the clock, off the phone (but never off face book, no my friends and family caught as many moments of the twins as I did, this proud mama shared it all, the good, the bad, the ugly) and out of my car as much as possible, I just wanted to snuggle my two beauties as much as I could all day long and because they where my 4th and 5th I knew all too well how quickly time passes and that every minute counted as small they would not stay for long.  I was in baby heaven.  I always screened them for autism; I guess it’s just in me now.

The twins esp E was very small and their weight plummeted so much they wanted to put them into peads for a few weeks, I cried as its such a relief to have twins who don’t go to scbu, to be than told they should have went and that they not doing so good.  Every 2nd day we where back to hospital with them for weights, bloods etc as they both had bad jaundice too.  Eventually after 2 months all settled down. 

 At 6 weeks I said to hubby, hmmmm M is very lights are on but no body’s home kind of way.  I flipped in and out of thinking something was wrong with him. 
They never really did well at their developmental checks which was another red flag, they where hugely delayed reaching their milestones too.  They where the best sleepers up to 4 months where they shared a cot, dream babies, than as soon as I separated them to separate cots, all sleep went out the window.  Bye bye sleep was nice knowing you. 

At 4 months I knew something was wrong with the twins, I was sure,  By 8 months I was certain and I placed them on the assessment of need against the public health nurses and amo’s advice but their both a bunch of ass holes so I daren’t listen to them anyway.  E was sitting but M was not, E was babbling but M wasn't, but than M started walking but E was 2 before she walked.  They kept failing hearing tests but where given all clear with audiology, E needed a lot of physio both needed a lot of OT and S&LT.