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.  

Tuesday, May 12, 2015

onward and upwards


onwards and upwards i hope  

I’ve got to say reading back through all my old blogs is weird, I had forgotten just how tough our journey was/is, there are behind the scenes issues with K and R but not relevant to autism so not relevant to this blog but reading back I wonder how I ever made it this far.  I was starting to get stressed just reading the stress but than I stumbled onto this old blog.

The fab My gorgeous  Mr fab, is just that FABULOUS

Today mr fabulous tried something for the first time ever, PASTA WITH SAUCE, was so shocked, I doubt he’ll revisit this moment of madness but was just great all the same.

He is after taking a major stretch and he’s just a whole new child. His interaction is fantastic and his non verbal methods of communication are so clear and visible. He really has amazed me with his new found devilment streak as well. He will do anything for devilment, he loves when I have to run after him to grab something off him or chase him for getting dressed. He is so capable now as well, he’s becoming very independent and interested. He is even starting to tolerate R so much more. I have L’S tutor and my dear friend B to thank for a lot of this. They work so hard with L that it’s really showing and paying off. G, Crazy jane and I will take a little bit of credit of coarse but just a little lol. Now if they could rid me of my crazy artist mr fab who paints with shite (no really, shite) I would be so delighted lol.

R is still the same lunatic as ever, that child will put me in an early grave I swear. He’s so funny, just so smart, cheeky and energetic. He has us exhausted and his tantrums are horrific but he’s just so damn cute. He walks around the house with the car keys babbling away to him self in Portuguese (Brazilian) and English, add in baby babble and we have www.confusedmamanddad.com we never know what he’s on about but he’s just so funny.

K is becoming soo grown up it’s scary.. She went to the cinema to see eclipse (twilight) and she looked amazing all done up in her black dress, denim jacked, perfect hair and make up. I really just had to stop and look at her; she was soo beautiful and just older than her years. I always knew shed be so much more mature in her age than most as I could see the build up to it.

I’m slowly starting to get back to my old self and feeling more positive and good again, it was so bad there for a while. I’m exhausted from all the stress, work and negative thinking that I let it suck me under, I even started to eat soo much crap for comfort and now I’m huge, I have so much weight to loose, I feel soo different and negative about my appearance, I’m even paranoid to wear most of my clothes.

I’m determined to loose this weight and get my backside back in motion. I was recently studying psychology and Child Psychology and gave up through the diagnosis and pregnancy period but I re enrolled and I’m due to start back very soon, I cannot wait as my brain is starting to cry out for me to use it again. I think being around my friend who is a Psychologist/Psychiatrist and our debates and long chats and advice to each other has really made me crave to study again. G has also been at me for the last year to return to my studies as he knew I needed it. G is freaky that way; he can read me like a book even when I can’t read my own self.

I swear my life has bipolar, I don’t but my life has

 another old blog   LITTLE WONDERS (LUCAS SONG)

I was really brain storming a blog today; it was about the nature/nurture debate of the BOLD child. (hate that word and don't believe in it) my mind was racing with what I wanted to type, but then my hubby started talking to me and I completely lost focus and my taught disappeared, just like that “ poof “ gone. I tried to get my train of taught back, but gone, vanished, lost. I know I will write it again as its a topic I strongly have an opinion on but for now, its gone to bed and will set its alarm when its time to get up lol.

My motivation is so lacking today, to the point where it’s 2pm and I’m still not dressed or washed, yuck. I’m munching on Aldi’s big bite tea cakes (seriously yummy comfort food) I’m shattered and a bit down, I have no idea why, I’ve been really struggling the last few months and I think it’s just caught up on me. While with my new fabulous doctor yesterday I was explaining all about an event in Ks life and I just burst into tears. It was so hard to stop crying.

I finally admitted out loud that I can't cope anymore, that I’m struggling more and more every day. When R cries, he screeches, it’s so painful to listen to as it’s very high pitched. He is so good yet so much harder than the other 2. He cannot cope for one minute to be on his own. If I go to the utility room from the kitchen, he cries, if I go to the loo, he cries, if I move from his sight at all, he cries. I try and ignore it but it’s just impossible.

What really got to me was the Area Medical Officer yesterday. Well dear if he is waking for a bottle at 3am, why don’t you try giving him his dinner then? I have to admit my face must have said more than a thousand words. I just stared for a while and said NO, no I won’t as I’m awake again at 6 with L. She gave me the kind of irresponsible mum look, if it wasn’t for the health nurse rolling her eyes in my favour I think I would have taught I was a bad mum for not doing it. Then I remembered that the AMO is not the enemy, she a lovely lady and believe me, if your child needs something, there is no better woman to have on your side. I took a deep breath and let it roll right off me. Ok a close one, but I’m OK.

You see I can ignore a lot, over look things and just simply let comments that are irritating roll right off me, but that’s because I’m functioning perfectly, but when I start snapping and loosing it, that’s when I know I have to go into hiding, avoid all potential dangers and hibernate until I’m feeling fine and dandy again. I hate when I feel this way but it really is the safest option. I know I have to keep filling my head with happy thought’s. Take deep breaths and count to 10 before I answer people. I have to avoid all annoying people, stay clear of people with negative vibes and just surround my self with positive happy vibes.

I also have been focusing on the little things in life, and remembering what they really mean and what their all about. I’ve been in touch with a fair few people who I was very close to from years ago, and I have to admit, talking to them about good times has been great and up lifting. Exchanging stories back and forth, having a giggle about the crazy stuff we did, remembering how crazy we were and full of life we where.

I also got thinking to songs that remind me of good times, brought back memories and just mean something. I was buzzing through you tube the other night and a song came to me, I was hoping id find it and I will copy and paste the lyrics. This song reminds me to L, his struggles and how they don’t matter; it really reminded me that the little things are the important things in life.

So here’s to you L, you truly are one of life’s little wonders, you are amazing and your smile is like the sun, your eyes are like diamonds and your logic is your talent. When you smile you light up the room, your eyes twinkle and smile with you, they tell me how you feel and let me know when your happy, they fill my heart with joy when they look back at me, when you share a kiss or cuddle with me I remember to embrace every minute and not be too busy for your attention and affection. I cherish your way of thinking as it is innocent and adventurous. I am your guide in life and I always will be, but you are my guide to happiness and I hope you will always guide me on this path with you and remind me to stop and think of the little things as they are all that matter. That life is as simple as you want it to be and that stress is the enemy that takes those happy feelings away. You are my everything xx

L’S SONG   I have posted a you tube link previous and if you go to your tube and search for rob Thomas little wonders you will find the song, its an amazing song


Rob Thomas - Little Wonders Lyrics
let it go,
let it roll right off your shoulder
don't you know
the hardest part is over
let it in,
let your clarity define you
in the end
we will only just remember how it feels
0ur lives are made
in these small hours
these little wonders,
these twists & turns of fate
time falls away,
but these small hours,
these small hours still remain
let it slide,
let your troubles fall behind you
let it shine
until you feel it all around you
and i don't mind
if it's me you need to turn to
we’ll get by,
it's the heart that really matters in the end
our lives are made
in these small hours
these little wonders,
these twists & turns of fate
time falls away,
but these small hours,
these small hours still remain
all of my regret
will wash away some how
but i can not forget
the way i feel right now
in these small hours
these little wonders
these twists & turns of fate
these twists & turns of fate
time falls away but these small hours
these small hours, still remain,
still remain
these little wonders
these twists & turns of fate
time falls away
but these small hours
these little wonders still remain


school rewiring stress


7 my boy goes to big school  /   rewiring

I was really at an all time low, especially since St Patricks Day.
I was so upset as L is amazing, he is everything a mother dreams of in a child, handsome, happy, strong, affectionate all of this, yet he seems to stay at a level for such a long time, progression is not something that comes easy for L it’s a snails pace progression, this upsets me as all the work, effort and time everyone to do with L puts in, it’s still not enough to speed things along, it stays at a pace that drives me bonkers. I don’t want to rush him by any means and im not looking for a fix but you do get worn out with phases, esp shit smearing phases and aggression phases.

I remember after L’S first ever seizure seeing huge immediate improvements in L’S intellectual development. His eye contact improved, his receptive language skills improved, he vocalised more all of this but yet I taught it was coincidence, and how could something so horrid actually benefit a small child.

I remember thinking another time that L must have had a seizure as something was not right when I found him in the morning, but he must have been well over the seizure as very little evidence he had one, again, improvements, major ones.

This seizure just gone, I knew for definite that these seizures are like a rewiring job on L’S brain as the huge improvements where not only visible to me, but to all who know and work with him. He’s like a different child, he seeks interaction and seeks kisses and cuddles. He is flying with P.E.C.S exchanges for everything, food, toys, everything. He is more tolerant THANK GOD of his brother and his mental tone of squeals, crying and laughing. He is trying different food textures, he is trying to do so much more for himself, his vocalising and interest in vocal sounds is really a huge thing, he now puts his hand on your lips and throat to feel the vibrations when you sing, he is just a different child.

It is so strange how our bodies work. A seizure is such a traumatic, frightening and heart stopping event and yet it is doing my son the world of good. I will never understand this and I still would never wish another seizure on my son but I’m not so frightened of them any more, I’m comfortable knowing that it is in a strange way helping him and not harming him at all.

I was so proud and happy to watch him playing with my friend the other night. He gave kisses, cuddles, and interacted with her for ages, he gave her amazing eye contact, he has known her for 2 years and she would never pass by him and not greet him, yet she knew she would never be greeted back, and now he’s on her lap cuddling, looking for tickles and shock of all shock, he allowed her to squeeze his HEAD, this was never allowed by anyone but me and his OT, he requested her to squeeze his head. I was gob smacked. This was huge.

I’m so happy that L is coming on so well, I’ve been waiting for this type of progress for a very long time, we all have. He has his EEG in May and I cannot wait to ask some questions and hopefully have a better answer to what is actually going on with him.

Big boy going to school

So we won the fight to keep L out of a mainstream school but lost the fight to keep him in his resource centre/playschool.  L was to start in an ASD unit, this unit is an hour away from me, and because I refused a local school they refused me transport.  Cause like how dare I put L in the most appropriate school for his needs like, oh the cheek of me.  I did receive some shitty grant though but yea was a pox. 
So he enrolled on August 31st and started Sept 1st, yes it was THAT mad.  You’ve no idea the shit we went through at this time.  L loves school; the drive however is killing me.  L misses a full hour of school every day as I have to bring K to school and R to playschool before L can get to school, did I mention its an hour away.  Exhaustion, but he loves school we will persevere.  My friend starts working with L every day as he is a psychologist.  He helps me out by doing some of the driving with me.  Thank god as it was impossible. 

NEVER ENDING

I got some of K’s stuff going on, her appointments are killing me, she’s killing me and all going on in back round of it all killing me.  , I got Lunatic john’s results from the hospital, all clear so that was a huge stress laid to rest and a major relief. But with good news comes bad also. The doctor went over the history again, he pointed out that R is very loud and over hyperactive. He especially pointed it out to me after R almost smashed his flat screen computer monitor and then broke his blood pressure thing (again) and as he was picking up all the stuff from his desk that R flung off it, he explained that R does not eat enough to burn off so there fore he is burning off his muscle tissue also. If he does not calm down and start gaining weight that he will need to be put on a special drink to help him gain weight. They are very concerned with the over hyper activity and have mentioned those lovely magic 4 letters, adhd and will bring him in and monitor him every 4 months. The squeal and loud shouting is also a behaviour associated with ADHD and spectrum disorders but they have completely ruled out asd. So yet again I am faced with more problems.
Great, just the news an already stressed out, exhausted, emotionally, physically and mentally drained mother wants/needs to hear, I think G is just praying that he grows out of these behaviours and he calms down and is just problem free, in my heart I am too, but in my well tuned brain, I know what’s coming in a few years.  Assessment of need is looming, AGAIN. On a good note lol, L also got results back from the hospital, ah yea, one hospital in Galway and the other in Dublin; I’ve been clocking up some mileage these days. L is cast free and will get away with one round of Botox, thank god as those casts where like deadly weapons. L knocked me on conscious with those things during a playing session one morning; imagine if it was R’s head, well actually L probably could more than imagine it being R’s head LOL


I’m trying to stay positive and keep my head in a good place but it’s hard, really hard. I have a lot of baggage with me that is really hard to leave behind. I have major guilt issues, failure issues, confidence issues, so much going on inside this head of mine. 


Sunday, May 10, 2015

trigger happy, and yea autism sucks

6 Trigger Happy more of my old blogs to continue telling the story of L’s autism journey


So you plod along nicely with Autism, teen and let’s not forget Brat toddler boy , its hard but you keep plodding along then PLOP, SLAP, THUMP, BANG, it slaps you right in the nut and you are knocked for six. Triggers yes, but somebody pull the trigger and send me to my resting place PLEASE.

Biting, lots and lots of biting, if it moved L bit it, and even if it didn’t move he bit it. So we finally get to the bottom of the biting episode, Mr fab’s way of saying I’m not ready for playschool thanks very much. Yes as soon as we took him out, biting stopped and I got my cool, happy, easy going baby boy back, yes L back in top form and doing great again. That simple, just didn’t want to go to play school, who knew lol so trigger found and all sorted.

To top that off I get a letter from Department Of Education to tell me that as L will be 4 in July that THEY feel his educational needs would be better met in a MAINSTREAM SCHOOL, yes you heard me right, a mainstream school, hmmmm he mangled half the kids in playschool and a teacher ot 2 and they want him to start school, hmmmm I don’t think so, well they were lucky I didn’t open that letter till 6PM as I’m only an hour away from their offices, and by god I would have let tem have it. I would have plopped L down on her desk and said REALLY, YOU THINK? How insulting and in your face was that letter, well em like how do you figure?? C***S!! then I would have went to financial and grabbed the one of the department of ed fuckers by the neck and shook her till I shook my tutors Home Tuition payment out of them, they never ever pay on time, ridiculous grrrrr what a useless, wasteful bunch of F*****s they all are.

On that note lol Mr fab actually went to the toilet in his special needs preschool, still will not sit on the loo at home as they have small loo there and he’s too nervous to sit up on a higher up loo but he did it, he did his first wee. Was so happy, I’m really hoping we can get him used to big loo now here at home

I woke at 7 one morning in a bit of a panic as L was not awake yet, you see he’s up at 6.30 eeeeeeing , oooooooing and aaaaaaaaaing out of him at the top of his lungs and banging the window at the cat every morning. I got that eeeerie feeling again, yes I opened the door to find my baby in his bed with that funny shaped mouth again, the milk bottle complexion, the creamy coloured lips and blank expression, but this time he was just coming through it so did not look dead and feel ice cold and stiff. He had had another seizure. But I wasn’t panicked or scared; he was sooo tired and sleepy that I knew he was ok so I let him sleep. I had the monitor plugged in down stairs and I checked him regularly. I refused to go to the hospital as they could do no more than what I could do and he was able to be in his own bed, with his teddies, his own blankets and pillow and with no added noise than usual. He was happier that way. It took till 2 pm and a bit of gentle persuasion for him to get out of bed, but up he got and ate a big bowl of his favourite food, chicken noodles and he hasn’t stopped eating and giving out since, he’s back to his usual self. I reckon ill be too stressed to sleep tonight thou as ill be listening out and watching him like a hawk but I don’t care.

R was having testes done for bits and pieces, K the same; my own health was a bit messed up as well. My thyroid packed in a good bit and I’ve been put on a new higher dose of eltroxin. I was so tired and just kept putting on weight and not shifting it no matter how little I ate. I looked like death walking, no matter how much I washed my hair it looked greasy. My skin looks dreadful and dehydrated. Ah I’m a wreck, yuck but I’m on the right track now and getting better. I got my hair chopped and layered again like I used to have and got my blond and copper highlights back in, I look so much healthier now with a lighter hair colour.  G was shattered and his skin in bits from stress and allergies, how are we surviving is beyond me.

Still fighting dept of ed to leave L in his resource centre instead of going to school, a loosing battle too it was becoming. 

That oul dog called depression

Me thinks Mr fab is only processing at night the fun he has that day.  Some nights he does be in his room laughing, jumping around, eeeeing and ahhhing till all the ungodly hours. This is most nights, when will I ever get a full night’s sleep. 

Sometimes you get so tired and down your mind wanders, the more tired you are the darker the wander. You start feeling like a failure, especially when you keep loosing battles after really long fights, you just want the fighting the stop, you want to feel normal and do the things normal families do, you want life to be less stressful, just easy flowing for once but it never does.  The less sleep you get the more thinking this shite you do.  You see other families out having fun, on holidays in the sun, siblings playing together, esp. face book, face book can be a killer for that, you sometime feel jealous, you crave what you know you can never have, you look on your own life like its crap, you feel even more abnormal, you start dwelling on it.  It takes a lot to remind your self that life may not be perfect but its by no means crap, you have to fight with yourself to get your positivity back, your feeling of loving life and what it gave you again. It’s very very hard, and you fight with yourself to get that feeling back because your ashamed of yourself for feeling negative. Your worn out trying to balance 3 very different children of very different age groups who are of very different abilities,  Days out are a nightmare as you cant please all 3 kids and it makes ya not want to go out in first place.  It’s just a depressing life at times and you really have to try hard to rise above it all and it makes you physically ill fighting against it all the time. 

St Patricks Day for example

CRAZY JANE had been invited to join a local parade with her brownies club. I kind of was unsure as to whether CRAZY JANE would like it, you see she is a bit noise phobic and brass bands etc might just send her into overload. I asked her, she wanted to go but I wanted to spend the day with her and L so gave her another option. We came to the conclusion that she would not go. I was relieved as G was working and L would not go near a parade for love nor money.

So I decided to ask k’s friend to join us swimming and then for lunch for the big day, she was delighted and said yes. They talked about swimming all week and K was really looking forward to it. I could have picked a handful of kids to ask but I chose this one.

So the big day arrived. I made pancakes for breakfast with a big bowl of tropical fruit salad, yummy, enjoyed by all. I managed to drop Lunatic john to my mums as out and out war had broken out between him and L. Lunatic john taught it would be great fun to scream his way through breakfast sending us all into a bit of a downward spiral mentally. So R gone, L calming down, our nerves settling again.

I for some reason said to my self, I’m sure my membership to the pool (can’t do public pools with L, too crowded and noisy, rushed and all that crap) was coming to an end, I had better ring just to double check so that I could bring proper stuff to renew etc. Well thank god I rang, pool was closing at 12 for the day (it was then 11.50) Oh no, what the hell am I going to do now. I really want to spend St Patrick’s Day with K AND L, but with L’S condition we are so limited to what we can do.

I looked out at the grey skies and said; maybe we’ll make it to the park and escape rain. I called in the two girls, k was delighted with this option, and the other girl was not. Oh god, how bad did I feel, the poor kids. I was forced to make a decision I did not want to make. I decided to leave L behind and bring the girls to the cinema and McDonalds. They where delighted with this. I was so sad as I again had to make the decision to leave L behind and not spoil his sisters day. I am being forced to make this decision a lot lately and its really killing me inside. We already can’t really function as a family unit with Mr fabs intolerance of his poor little brother so to accommodate Mr fab Lunatic john is shipped off a lot to my mums. The poor child spends more time away from us than with us as L simply cannot handle the noises he makes (to be honest we barely can either, its dreadful painful noises) so again we are completely divided as a family.

G –working, Lunatic john – mums, L home with working dad and CRAZY JANE off with me.

NON FUNCTIONAL AS YOU CAN SEE

Just as we are ready to leave, the little girl we where bringing is all of a sudden out of no where sick, your kidding me. K broke down, she sobbed and sobbed.  Poor K, and after all that the poor child could have went to her brownie parade. But no I chose to suggest a family day that in the end never took place. Sometimes Autism can really suck at times.

We went to Another  town in the end and caught the start of their parade. A circus was there too so we got tickets for that and went to see the princess and the frog. It’s actually a lovely film about New Orleans and jazz music. The circus was fantastic I must say. I taught it would be crap but filler for the day but we actually really enjoyed it. Poor K was planking her self at the acrobats and tight rope walkers. She was freaking out in case they fell; I had to keep telling her that they would not fall, not to be worrying lol. But we really enjoyed the day and she had nothing but smiles in the end.

I had a chat with her on the way home and I said, I really missed L, R and daddy today. Blank, nothing, not a single emotion. So I said, did you miss them? Why? She asked as if to say, but why would I. I’m here having a great time isn’t that all that matters she implied. Ah yes Autism can really suck. It never entered her head that they where not with us, that they where missing out on the fun, the celebration and togetherness. I was sad as when will we ever be a family unit like everyone else.  Is autism so bad for her that she can’t bare to be around it, that she actually preferred them not being with us?  I just felt very sad about it.


It’s getting so hard to get my head around just what our life is turning into. I’m so loosing my bond with Lunatic john as he is always being handed over to my mum as L is too upset by him. K is really showing more and more of her selfish pre teen  self the older she gets, L never changes, and that’s a big problem as it means he never progresses further, he’s just stuck where he’s at since a long time now. He has little tiny itsy bitsy progressions but nothing big, nothing major. I so want that next step to come, that next level but I’m just waiting and waiting.

I really want the day to come where L and R can remain in each others company for a day, not just 1 hour. I want us to be a family and do family things. I hate my husband’s job, he never has time off, it’s really getting to me, never a bank holiday and we are never all 5 together at one time, always separated by circumstances we cannot control.

Life can be sooo crazy  sometimes. Im glad K had a great St Patricks day in the end, she deserved it, she’s been so good helping me with stuff, the kids and I really do want to give credit where credit is due, she’s a fantastic kid but her pre teen hood can make her appear rude, selfish and distant and that’s not who she is, she’s the kindest, loving and giving child you could meet but this little thing inside of her can change that in a heart beat. I’d love to stamp all over her preteendrome and kill it sometimes, it can be torture to live with and it’s hurtful and shocking at times. I hate it, there I said it, I hate it. Autism I can live with but I hate pre  teenager syndrome. I hate what it does to my daughter; I hate how it controls her and takes over her. I hate that she struggles so hard to fight it and keep it at a safe distance.

So yea, sometimes Autism and pre teens can just really suck


Rob Thomas - Little Wonders [Official Music Video]






l's song

road to recovery AGAIN




5 road to recovery AGAIN

We finally come to terms with L’s seizure; we searched every inch of the web. Apparently it is perfectly normal for any child to have one possibly two seizures in their childhood. That’s a comforting fact to all mothers out there, I’m sure. There is no explanation, they simply will never know what’s caused it, or if there is more to come. You never let a seizure go on for more than 5 minutes, you NEVER wake the child and YOU LET the child SLEEP after for as long as the child needs to after it.. If seizure lasts more than 5 minutes you ring an ambulance.

(Please if any of that information is wrong please post a comment with the correct info and I will change it, thank you xx)

It’s nearing October; L’s Botox and casting procedure is due in a few days. I have to admit I’m nervous as hell as I’m afraid he will have a seizure under the anaesthetic. But he’ll be in the best of hands so that helps me a little. We arrange to leave Lunatic john in my mother’s and we being Crazy jane and L to Dublin and stay in my brothers house.

Today’s the day, the moment I’ve been dreading is here. We are the first into the day ward, handy, first in, first done unless a child younger than Mr fab and more severe than Mr fabulous arrives. Nope Mr fab’s first, at first they were going to cancel the procedure as Mr fab had not had an EEG on his brain; they eventually decide to go ahead. We are not allowed go to operating theatre as they are doing work on that area. I walk with the porter; he’s lovely to the lift. I have to actually stop there and trust this man and the team with my son.

It’s a long wait, but here he is, sitting up smiling, he’s a bit groggy and he has 2 blue casts on his legs. He didn’t bat an eye lid at them; he loved the feel of them and kept looking at his little toes poking out. He’s wolfing down toast and 7up. He can come home, once he’s up walking. He’s wobbling all over the place, he looks comical but he’s walking, on his tip toes, OUCH the nurse said its normal, leave him to it. They gave me the vilest looking shoes, open toed, its autumn?? Straight to McDonalds, then into pennies for a pair of uggs, ok their girl’s uggs, but when you cut the boggles off, their quite cool.

How funny, Mr fab is like a demon when we get home, NO ONE is allowed to sit on the couch; he pulls us all off, with a few scrapes and pinches to go with it. What are you doing you little nutter. No, no one could sit on the couch, so I made everyone sit there and do their best to stay, on, he went mental, and he’s got some strength for a 3 year old child. We finally arrive back home, we pick up Lunatic john from my mum’s, she’s changing his nappy on the couch, Mr fabulous straight in and grabbed Lunatic john by the arm, wow my mum’s got some good reflexes, Mr fab then tries to pull Lunatic john off the couch by his ear, the screams, the scratches, pinches, and just determination to get everyone off the couch was just mental. My mum decided to keep Lunatic john for the night just till Mr fab calms down.

He’s like an elephant when he walks, thump thump thump, those casts are heavy little things, thank god we waited till October. Again with the couch, ok I made Crazy jane sit on the couch, every time Mr fab went near her I gave out to him and made him stop pulling, Poor Crazy jane had a few war wounds but she knew we had to get Mr fab to stop so she persevered. Mr fab eventually stopped doing this at home but went on to do it in the in home worker’s house. What can I say; I got a strange child lol. He eventually stopped after a few WEEKS.

Everything settling we’re delighted with how Mr fab has taken to the casts.
and its getting better
A miracle has happened. Mr fab and Lunatic john although not the best of buds are kind of ok together, KIND OF. They can be left with supervision or separation by corner in the same room. Wow this is a major break through. Lunatic john loves to follow Mr fab around; Mr fab just about tolerates Lunatic john, just about. This is not perfect or an issue resolved by any means but its something. Lunatic john even is sleeping a bit better at night, A BIT.

We find our selves having to secure the telly even more to the wall than what it was, Mr fab likes to hug it and slap it ferociously. We have to board up our chimney, yes Mr fab liked to go up there, get stuck up there and paint the front room and hall with the contents from what’s up there. Mr fab also decided that the couch was thirsty; he poured a full 2 litre of milk down my comfy, lovely cream leather couch. Oh the lovely fresh smell of sour milk. Please go away smell as I love my leather couch and never want to part with it. It does EVENTUALLY thank god. Oh this is just great fun. Mr fab is becoming so interested in his surroundings, and investigates, eats, colours, paints everything in site, he even rips the wall paper off the wall, go Mr fab, explore away, oh god, he is a nightmare.

Life, it’s not perfect and I sure as hell know it never will be, but it really is just the little things that really make it all worth while. Mr fab is non verbal but yes he can communicate. If he wants a drink, he’ll waddle over with the bottle of 7 up, milk, juice, which ever one he wants is. If he is in the sitting room and needs a drink, he’ll simply fling his beaker at you, erm yea thanks son, same to you with bells on. If he wants fruit he will stand in front of the fruit bowl, clap his hands in excitement and simply vocalise an eeeeeeeee sound so that you hear him and see him. You see Mr fab is very clever, the Pecs cards are Velcro’d to the press of all his fav’s, but Mr fab is a stubborn oul shite. Mr fab knows that he should hand you the Pecs card, but why would he do that when he can simply open the press (even with the child lock on) and get it him self. If it has a wrapper he will simply throw it at you as if to say, oi you, mummy person, open that for me.

When I think of Mr fab I think of stuey from family guy. I think that’s exactly what goes on inside L’s head. (Well now you know what I mean, I don’t have to explain) I see Steuey and I instantly think of L. You see I know L is extremely intelligent; I have no worries regarding him in that area. I also know he is very stubborn and again wilful. I know he thinks all sorts in that head of his. The cheeky grin says a thousand words. I think he quite likes to keep us puzzled as to whether he can or can’t speak. I think he deliberately holds back as he enjoys his way better.

I understood a long time ago that Autistic kids are just the same as us, only their world is just a lot better than ours. Why listen to noise if you don’t want or have to, let’s block it out. Why put up with a screaming baby, he’s not my screaming baby, you deal with him, just keep him away from me. Work, I will if I want to, but don’t think for one second that you can make me. Hand you a card, you mean seriously if I want a banana I have to hand you a card, will ya fuck off you insane person, if I want a banana I’ll get a god damn banana thank you very much. The smell of that is irritating me, remove it please, and so on. I’d like to be like that at times myself, what’s wrong with that really at the end of f the day lol.
I’m very accepting of Mr fab’s autism, and I always have been. I see my boy, happy, enjoying his own world. I could have done strict ABA, but to be honest, Mr fab didn’t need it. I could have strict routines and strict rules, why, L simply does not need that either. I could put intense pressure on him to speak, communicate words like WANT, I, HELP, why? L will grab your hand and make you help him if he needs it, Mr fab will more than let you know what he wants, he is able to communicate extremely well that even strangers know what he wants, because of this, he does not suffer frustration all of the time, just some of the time, he does not get angry and hurt, lash out all of the time, quite rarely actually.
He is in fact a very calm, easy going and very expressive and communicative non verbal autistic child. I encourage the words as do the school and he is making excellent process and his vocalising sounds at the minute are just brilliant. I also am convinced along with tutor and other family members that we have heard words and in the right context. This is just fantastic news but again, there will be no major pressure put on him. In saying that he’s still very young. Hormones have not yet kicked in, teenage years a long way off, all this could change dramatically, I’m sure they will, but lets be happy with the L here and now and deal with other stuff as it arises.

I know other autistic children are not like this, and I know I’m very fortunate that Mr fab is who he is, I’m very fortunate to be able to go to a restaurant with my son, yes even a snobby one and have a nice meal. Mr fab loves his food way too much to let autism ruin his dinner. And if he squeals a few eeees and yummms do I care, no, so long as he is enjoying himself and behaving to some extent.

We can go to parks and shops with him, its stressful as he bolts but between the two of us we do it, it took at lot of encouraging and persevering on our end, but he enjoys it, so long as he has munchies to snack on and it’s not way too crowded and noisy. We have applied for an autism assistant dog for him, this will promote a lot more independence for L and security for us. The wait list is near 3 years long but we’ll see the benefit of that wait.
I love my children unconditionally and I don’t care who looks at them different, who slag’s them off, who stares if Mr fab is flapping his ears, I don’t care because I am fortunate enough to know better. I am educated to know better. I’m above it all and do know better, it’s the lookers and the starer’s problem. The rate Autism, ADHD, dyspraxia, spd, Asperger’s, mental health, anxiety disorders and all these other disorders are increasing, it will not be long before the on lookers them selves will be also witnessing a loved one’s, friend’s, or in fact their own child’s special needs.

I suppose it helps for me that I had worked with autism before I had my very own autie funky bunch. I kind of had a jump start on things that most parents wouldn’t have and the fact I knew something was going to be wrong also helped in a big way, it was less of a shock to our system. I worked as a child care professional before studying and becoming a sna but than moved into an aba unit where I started studying and practicing aba therapy. This is applied behaviour analysis where you analyse a child’s difficulties and follow a programme put in place by an aba psychologist. I then went onto study psychology, child psychology and counselling. Now until I had L I could swear blind aba was the only way forward for autism, but than I became an autie mum and I started to think differently. ABA is wonderful and I say use it if its for you and your family, I praise a lot about it, I just didn’t see how I could let it into my world and my child’s 24/7, I took elements from it and used them but I also took elements from everywhere else and used them also. I hired an aba psych to assess L and write him a programme and it was a great starting block. He went into a local service provider also who where brilliant and helped get me everything L and our family needed. I had the usual lengthy aggravating fights all us special needs parents have and I had my fair share of screaming matches down phones (you turn into psycho mom when you need to shout for stuff you are actually entitled to but don’t get.

Autism is really about taking each day at a time and going with it more than you go against it. Working with autism and living with autism are 2 very different things, as a person who did both let me just say some therapists talk shite to warn out drained parents and they never even realise it. They think their great offering you ideas, suggestions, help, well they’re not, sometimes as a person who works with autism can just be an ass, the mom secretly in her head is planning her shopping list or to do list while they’re still shiting on with all their wealth of information. You see they can come up with strategies for your child but forget you have other children a house, a hubby and a job etc to get on with also. They can put programmes in place, they can advise from the hilt but unless they’ve spent more than a month living with your child and your family environment they just don’t know shit about shit, they may think you do, they really don’t. Now there are other types of therapists, they’ve grown up with a autistic family member, they get it, or they have taken the extra time needed to understand your situation, they know well you cant do 3 hrs of speech exercises a day, 4 hrs of OT a day, 3 hrs of physio a day, 5 hrs of floor therapy a day yada yada, so they show you how to incorporate it into every aspect of your day instead without even realising your doing it. These are the gods of the therapists. Through teeth brushing, getting dressed, nappy changes, cuddles, play time, night time routine, feeding, you name it they figure out how to get the job done as quick and painless as possible without hugely impacting on your day and yours and your families quality of life. You see they remember you telling them your child and yee don’t sleep, they remember you telling them your child shit smears which involves lengthy heavy duty clean up (crime scene tape stuff) they remember he likes to bleed himself so he can paint with his own blood, they remember that he likes to make himself vomit so he can smear that too, they know your fucked tired and they know you cheerfully want to strangle your child at the best of times, they know, they remember and they just get it and don’t judge you.