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Sunday, March 25, 2018

Asperger's v auitsm

This is from my own personal experience only, what'sever is written here is from my journey and my kids

Severe non verbal autism
Its hard and its very challenging
The behaviours are extreme
They cannot communicate so they get frustrated and overwhelmed
Its 24/7 its groundhog day and its a very long never ending struggle

They can talk, they can communicate and they can live independent lives  but they need to learn a lot about the world first,

To achieve that is what makes you lose your mind

I put most of my parenting efforts into my daughter leaving husband focused on the other 3, but it needs and needed to be this way

My teen daughter  had problems with  rationalising, reasoning, organising  structuring , staying focused or on task, socialising, Understanding sarcasm, reading and processing emotions, she was self involved, Anxiety ridden and had no confidence or self worth, she struggled with peers and peer behaviour

I could go on and on here

This is now so much better but near gave us all a nervous breakdown getting her to the good place she is at today

She needed a lot of help with things even at age 18 she still needs a lot of help, but if I compare my teen to her peers in school , trust me my teen will go places and is more capable in ways than They are

We are a very open, honest and communicative family, we talk about everything and ask advice or guidance from each other on how to move forward
This goes for my husband and I, us and my 9 year old and especially for my daughter and us her parents

If me or my husband are unhappy we talk it out and find a solution and compromise going forward
We do the same witb teen, teen spent a lot of time being unhappy and she didn't like to compromise so we could never move forward, we got stuck on a loop, a lot a lot of loops, this was torture

I used to say and think that my teen was only happy when she was miserable or causing misery

She could not read emotions well, she needed me to explain them to her
She would say inappropriate things at inappropriate times
She would walk into the disaster and hazards
She would daze as she walked often getting lost or wandering off
Her meltdowns where endless and when she came out of it she would rethink it and go back into the meltdown
She had anxiety about everything and she had a fear of the most stupid of things
She was oblivious to anything that did not directly involve her
She had fleeting thoughts that scared the shit out of her

Ignoring a autism meltdown becomes a skill but there is no way to ignore an aspie meltdown

They come find you, they shout abuse at you, they throw things at you, they kick the door until you come out, they run away from home, they face book message you to continue the argue or they txt you, they threaten to tell lies about you, they manipulate you, they try control you

Now as a parent you should cop on and just nod and walk. Away, that's the appropriate response, yea that never happemed but your human and yes you snap and she says horrible shit to you,  you say horrible things to her, your parenting skills turn to shit, you fight with your child as your human and you sometimes throw things back

I'm not proud but I'm not apologetic either
Until your faced with the situation you have no idea what you would do either
I have thrown a hair brush at my daughter and it did clop her on the head
We laugh about that now
She has kicked, punched, scraped, and pulled hair out of my head, we laugh about this too
I did pack her bags and throw her out
We also laugh about this, in fact we remiiniss a lot about these things and laugh
Weve been through and done some mental shit together

The hse where useless in helping us, in fact they more hindered than helped

She's at that age now where we are friends and we are at a great place of communicating  and compromising
I have learnt through no help of the hse but through parenting her and studying counselling and psychology  how best to handle things, unfortunately it took 16 years but hey, better late than never I suppose

She comes to me for help with everything but it's fine as there are very few arguments now
She has turned into an amazing young adult very capable, in fact more capable and way more mature than her peers of life just not of her self
Were still working on this, it's hard but we're getting through it

Social anxiety is still very much a problem and structuring and organising herself, she is so forgetful and scatty when it comes to her self but not other people, why? Because it is written or explained
Babysitting, she is an amazing baby sitter
And in high demand
Why? instructions are left and there are guidelines to follow

For years we had hazard signs up like on the microwave door, NO METALS
she earned the nickname microbomber
She almost blew the house up
At the toaster, no cutlery while toaster is switched on, yep she would put knives in the toaster to get her bread out, mid toasting
Water and electricity was another disaster
Car parks and reversing cars
Crossing roads
Unplugging things like straighteners and curling wands

You know the song dumb ways to die, yea shes done nearly all of them, I'm amazed she's still here to tell the tale
In fact that is a great educational song and my teen learnt a lot from it

I copped on very early how to parent teen
Everything had to be black or white with her, no confusing unnecessary add ons or middles

Teen couldn't  have a menu in a restaurant (she can now but when a Pre teen, hell no)  too many choices over whelmed her and made her anxious, I picked two of her favs and told her to pick 1, even that was a panic

Saying no to teen was a rag to a bull
Instead of a straight up no, we had to compromise she had 1 or the other, park or swimming never a third option, beach or lake, or not today but we can tomorrow (but you had to make sure tomorrow happened and you had to follow through with everything you said

Teen needed military planning
She wanted to know the time we leave, when she could go to the toilet, how many towns we had to pass through, how long the journey took, the arrival time and where we would eat and at what time
I had to make social stories or a check list

My Mum babysat teen while we went on honeymoon for 2 weeks, she was 4 at the time
I gave my mum 4 A4 typed pages on how to get through the days with teen
My Mum thought I was nuts and laughed at me

School was never a right fit for teen, primary was HELL, secondary was better in some ways but a disaster in others, she was able for the academic side just not the peer side, although she tried very hard it just wasn't for her, she has left without her leaving cert but she's still in education in a place more suited to her and her needs, she's  with older people than her, she feels so much more comfortable and Confident there and has made so many more friends
Her self esteem is coming back

Something clicked at 16 and she actually realised I gave her good advice and life skills.  That I wasn't her enemy and Controller, she stopped defying me so much, I Introduced her to psychology and pointed out the things that related to her, seeing it in black and white and listening to you tube clips really did make her more aware and learn to process things better
She's actually quite interested in psychology now and counselling, she can council anyone through their shit times just can't council herself

Asperger's is in ways much harder than typical autism, the struggles are so much more intense and push every last button you have, there is no escaping it either

But my girl is amazing, mature and responsible, she is also very capable of practical things  especially if it has rules and guidelines

People don't come with rules and guideline unfortunately and this is where she falls down a bit

Saturday, March 24, 2018

Late night chats

When all the kids are settled and it's a good night and you stay up talking

Sometimes you talk about anything but autism and your kids, they're great nights
But when you do talk about autism and the future that awaits
Yea it never is a good conversation is it

Where will they go when your both dead
That's a very scary thought, especially with the crisis at the moment
Care homes being shut down, abuse being reported in care homes thanks to whistle blowers, cuts to funding

It's just too daunting a subject and ends up leaving you depressed and scared out of your mind

Then financials
You gave up your careers to care for your children, you had to, it was not by choice

So when your children leave the family home and are in the care of the hse be it care home or whatever, you can no longer claim money for them, you will no longer be their carer
Then what? Your just tossed aside with little to no money to survive,no pension to reflect the work you did just a standard state pension, and that's if pensions still exist by then

All these companies hiring robots, robots don't pay taxes, taxes pay social welfare payments ahhhhhh. Can't go there, too Scared

 yet you have to go there, you gotta pay the bills and loans you  took out to help provide for your special needs children, every special needs parent has a loan or 2 for something, and your mortgage still needs paying.

you can't  get a job as your inexperienced  and out of work for so long that your skill set is no longer valid, anyway robots are probably doing any job you would be qualified for
Fucking robots

What happens then

Apart from stressing over your child who's no longer in your home and the fear of the closed doors you can not see behind

You also have the financial stress
Then the guilt stress of not being able to have your child well adult I should say at home with you

Then if your kids are in residential care homes you'll have a whole new life to adjust to, a whole new pace, will you identify with yourself or loose yourself, will you know who you are, will you feel empty and incomplete, will you reinvent yourself? Will you and your husband stay strong together and create a new life or fall apart as you can't move on from the guilt and stress

Or worse, you have no care home or adult service available to you, what then?
Will you be mentally strong enough, physically strong enough and emotionally strong enough to care for your special needs adult
Can you both do it? Can you defend yourself against the aggressive outbursts cause you barely could with a preteen while in your 40s
Sickness, how will you cope if one of you are sick, or needing hip or knee replacement
What if one of you get cancer or heart disease or anything serious
Sure how would you cope if one of you had a typical sickness like the vomiting but
Their not kids anymore, they are grown ass adults, it's a whole new caring role and more challenging than before

Omg I'm sweating and panicking as I type

Oh I wish I didn't wonder so much about the future but some days its all I can think about

I'm very scared of it that's for sure

PS I typed this while lieng in bed sick with a severe kidney infection
I'm awake since 3am and in a lot of pain my back especially

I can hear chaos down stairs, my husband is solo parenting today after a very rough night with preteen
He had a 2 hour melt down and only went to bed at 1am

My mind is racing and I hate it
Sleep deprivation

So there is lacking in sleep, rough nights sleep, and no sleep and then there is what ever the fuck we are

We have our very own sleep tag team, seriously Olympic worthy

So preteen falls asleep at 10 with melatonin and antihistamines on a good night, depend on the phases he is in
6 Yr old girl falls asleep at 9 sometimes 10 ish with melatonin and phenegam
6 Yr old boy falls asleep at 8pm

Ok we go to bed when the last one falls asleep

On a good but very rare night they will all Sleep, great but your body can't handle this shock to the system of one night of sleep

On a decent night only 1 will wake at 3am ish   you can cope with that, that's really good

On a typical night girl will wake at 2am
You have to run and tend to her or shel get very loud and very hyper waking Pre teen
we must never wake the bear for the bear will rip your head off, literally

You settle her, go back to bed, but she's bouncing round the room, damn

You get nice and comfy back in bed but at 3/4am they boy wakes up looking for his apple smoothie fix, he's like a withdrawing heroine addict, cold sweats, shaking, shouting
You give him his fix, put  on netflix and run, RUN
He is waking from one of two things
He is noise sensitivie, all 3 of them are
His sister is making a noise doing his head in or he's had a massive sugar drop
He has ketotic hypoglycemia
He needs carbs and sugar to survive and its put his life in danger several times.
There is a blog about it on the page

If your lucky he will settle back down to sleep, rare but has happened
Mostly he gets hyper and uses his  bed like a Trampoline so you are in bed but he's too noisy to sleep through

If the bear wakes it's any time from 2am onwards
When he's up, the whole house is up
He wakes up shouting, banging etc full blown autie meltdown and nothing stopping it
He can be aggressive, stubborn etc, his meltdown can last for up to 30 mins to an hour because he's so disorientated and confused as to why he's awake, sometimes I think he's pissed off because he woke up
I don't think he knows why and he gets angry about it

Most nights  we are up to 1 child at 2am, then again to another child at 3am and up for good at 4am with another, this is a typical night for us

We are clinically exhausted

This places a huge stress on the whole Family, the only one who sleeps through them all is the 9 year old, he hears nothing
I Suppose he was born into the madness, he is slap bang in the middle of them all, he was conditioned to it as was born when bear was at his worst phase of autism

The only fix to our sleep deprivation is respite

We only have one autie in respite at the moment

Friday, March 23, 2018


We don't do Christmas well

All 3 auties under one roof among noise, decorations, noise, larger crowds, santy on tv etc

My kids can't survive on bank holidays so you can imagine a long ass holiday

Santy, yep my autie kids are terrified of him, even when on Peppa pig, ben and Holly, cbbs oh my God get him off
The screams, the meltdown, self harming

Visitors, again my auties aren't a fan, my non auties love when people come over however as do I but the auties  will gladly show them the door

Presents, no interest at all, they couldn't care less and opening presents irritates them as they hate the noise the wrapping paper makes

Decorations frustrate them as they are too loud, bright, sparkly, clanky, too much stimulation

They do love the goodies Christmas brings, the chocolate, crisps, pastries, yep food is the real present here

We dread Christmas every year, it's just torture for us, so much so it got so stressful with ds believing in santy (night owls and wake at a pin drop auties)  the magic of him was ruined every year anyway as could only open presents when auties sorted and in a different rooms and then had to be quiet, couldn't play with toys that where noisy as would upset preteen and twins etc
We told 9 year old he does not exist, it broke my heart but it was just something we had to do
He didn't give a Monkeys tho, we where not too surprised, I think he was actually more relieved,  all he cared about was that he got his laptop , he showed no upset or heart break
He actually said he kinda knew anyway as the movies made him think about it too much
So yeah Christmas movies aren't the magical thing you think them to be

Last year was the first year we had our extension and it made a huge difference

We planned in January 16 for Xmas 17
We moved and forfeited respite to get extra over Xmas holidays and it was just a really good move
We saved up money so we could do a lot of activities over the holidays with 18 and 9 year old like cinema, meals out, bowling, trip to relatives in Dublin, have relatives from Dublin stay here for a few nights, shopping, we just wanted to make it as much about them as possible as we are aware previous Christmas's really sucked and  how much of their childhood was robbed from them
They themselves will tell you they hate Christmas, heart breaking

Well we had the best Christmas ever
Bear was in respite
We had our Christmas Eve dinner on the 23rd with family, we went out for Christmas dinner on the 24th and we had a loud autism friendly Christmas day on the 25th and  26th and we went out the 27th and 28th again
Everything was brought forward by a day, we even done presents on the 24th as bear (preteen) was in respite  and we got a lot of in home for the twins

It was awesome, we barely had time to think as we where so busy out and about

So as you can guess we've done the same for 2018, we can't wait now for xmas, a statement I never thought you would hear from anyone in this family

We flipped the finger to typical traditions and made our own, we made our own autieland Christmas and it was awesome
Ketotic hypoglycemia

What is it, how it affects my child

When my 6 year old was born he was healthy like any other child.  It was his twin sister who was under weight, smaller, weaker etc but when he reached 6 months old it all went down hill.
His twin sister took over and became the strongest and healthiest and heaviest and he just plummited

Gastric bugs hit our family hard, we find it very difficult to shift them, mostly because we're all on top of each other and heavily involved in caring roles of our 3 autistic children, even my 18 and 9 year old are

 pre extension (house adaptation) they all shared rooms and where even more on top of each other
This was hugely problematic and promoted gastric to spread more rapidly
And stick around for longer

When my little boy vomits or has a very high temperature he looses sugars in his blood, this then causes his keytones to rise and sugars to drop further pushing him into a hypoglycemic state, high temperature just burns the sugars away and makes him plummit faster

It was a full two years actually more than that before he was diagnosed with this, it was always a question mark or possible DX but now it's official

He may or may not grow out of it, we're praying he does as it's very scary

What happens
He's happy healthy and full of energy then wham, he's flat and passing out
He goes very sleepy, this is not good
Then he'll vomit and we are straight in the car or ambulance to hospital

He needs glucose drips, bolas drips and and sugar drinks, dexterous gel etc if were lucky he may get out a few hours later but mostly its over night and becoming rare now we are there more than one night

We have a glucose monitor at home and a protocol, it used to be one vomit then hospital now since he's older and we have found ways to treat it better its 3 vomits and sugars at 3 then hospital but if we can smell the keytones rising (they are potent) then its straight to hospital

His diet has to be carb heavy, lots of bread and high sugar drinks and fruits
He is very skinny tho and a really bad eater, typical autism diet fads so he makes carb loading hard, he is also extremely hyperactive as has ADHD so burns what he eats almost straight away
This leads to 3 am wake ups with sugar crashes and his body needs sugar and carbs straight away to avoid a hypo episode

This paired with autism and adhd makes life harder and nerve wrecking at times
And not to mention the complication of one parent being in hospital with one parent left solo parenting the others
Its really hard going and then let's not forget sleep deprivation added to all of that

Its a nasty illness that leaves you scared out of your mind, I've seen my son hooked up to a lot of monitors in a really bad dangerous state before my very eyes and the fear that you didn't make the hospital on time
The hospital is 1hr and 15 minutes drive away IN GOOD WEATHER

That's why we ask people to avoid us like the plague if they or their kids have gastric bugs, we campaign to ask parents to stop sending their children to schools sick, that people do not go to work and be out in the public sick
That they understand the bug and follow the guidelines for recovery

Your little gastric bug could kill someone who's immunes system is compromised
And no that's not a dramatic statement its a true statement
House adaptation

Remember when you first started your autism journey

I do, we where both working and had money and savings
We moved as preteen was being DX so we had a better quality of life, lower mortgage, slower pace of life yada
Better schools and services, and that's exactly what we got

But, there is always a but isn't there

Our savings just went, we paid out on private therapies, aba, assessments, counselling for teen, we autism proofed our house,  childcare, inhome support, we concreted our entire garden as it was just a swamp,
Concreted a trampoline into the ground, separated our sitting room into two rooms as was too biig and used one as a therapy room,  floored our attic,
Bought big sheds, and had one kitted out as a huge play house
The money just disappeared
Then we upgraded our car to allow for heavy milage and durability to long distance schools and hospitals
Some a 3 hr drive away
The savings just vanished, I was a carer on low money but husband was working a great job so it was ok still
We where comfortable, no savings left but good wages

Autism bleeds you dry, every penny goes into autism some where

Then the twins came along, which was perfect
We where so happy and had the room or so we thought yikes, little did we know

So things got complicated, very complicated, ohoh the twins are not developing as they should or reaching milestones, and then final confirmation
The twins have autism and intellectual disability
Heart ache, utter devastation
You have no idea how sad this time was for us and how our lives where shattered once more

An even bigger blow hit, my husband had to leave work, life got chaotic and we could no longer maintain a parent at work and one coping at home we needed the two of us home
This was a blow like no other
Financially, emotionally, physically and mentally

So we eventually got a rhythm and made our peace with things
But the house even tho a 4 bedroom house was just simply too small
The small therapy room was turned into a bedroom for preteen,  the twins went  into his room, at first travel cots worked as a means of safety but then they learned to climb.  Then we devided the room with a fence type thing,  yea they climbed that too and made it more difficult to shift a gastric bug as they where so on top of each other

My girl used to sit on her brothers head in the middle of the night and jump on it, it was so dangerous, then other times he would climb into her and pull her hair OUT and bite her, it was a nightmare

My social worker handed me the forms for the grant and basically said were doing this, I was like no way they gonna grant me that, I'm so glad she made me apply , we had a fight to get a bigger adaptation than allowed and we won.
We had an amazing TD, his staff, the support of everyone involved with my kids and a very understanding co council
We also fundraised to kit it out with sensory and of equipment and took out huge loans to finish it

We cannot believe the difference this made to our lives, we installed security cameras in all the auties bedrooms and therapy rooms, we have spare sets of eyes now lol 

The space in the house is just fantastic, they are so happy to be free of each other and we've had less hospital dashes with my 6 hear old as can quarantine the gastric bugs and viral infections much better

Everyone has breathing space now and they really can regulate themselves better thanks to the therapy rooms

I would advise anyone in really big need to apply for an adaptation grant but i would also warn it is hugely expensive  as you need to pay architect and engineer for plans and kit it out
That's the very expensive part
But worth it


Yep we all feel it , special needs parents especially

There is so much to our one day than you could ever imagine

It typically starts at 2 am for us, sleep disorder in special needs children is quite common, while there are medications to get your child to go to sleep there aren't really any that keep them asleep

Mornings are hard, its quite stressful to seperatley feed 3 autistic children who hate the noise of each other, that's great craic all together, there is a lot of crying

Than just dressing 3 hyper stubborn children, its like trying to wrestle crocodiles

Packing bags, lunches, giving meds

So your already tired and drained before the school bus even arrives, then it's the mundane house work or appointments

Then home for 2 to meet the kids off the bus then homework, dinners, after school activities, showers, ready for bed routine

It's a horrific stressful day from start to finish, there can be several tantrums and meltdowns in between, and that's just the adults lol. The bed refusals are hard too, preteen does this a lot, sometimes your up till 11 waiting for him to nod off and you can't go to bed till he is asleep, that's also getting difficult especially when you know you will be up at 2am
That's a pure killer

Phone calls and paperwork can be quite daunting, the paperwork is the one I find hard because I'm so bloody brain tired
Trying to keep concentration and remember dates and hours and dates they did this that and the other, I can't remember yesterday in fairness

Social welfare forms are the worst, that drives me silly as requires gp signature, consultant signature, photocopied reports, form chasing
Some forms can stress you out so much you can go into a fit of utter rage and wanna just tell them exactly what you think of them  and where they can stick their form, I have done at times too

I hate being denied something i know my child is entitled to, that really winds ms up, so your leaft writing an appeal, more paper chasing, Dr chasing, signature chasing, photocopies, then you win, why, why put a parent through that bull shit.  I am the kind of parent who won't look for what I don't need, but will look to get everything they do need, and I'm like a pitbull fighting for it, but if I know I don't need something that I could be entitled to, then no if I don't need it I haven't the time or patience to put into looking for it

I've had many a form and application almost send me demented and you kinda turn into a psycho as your that riled up by it, it can make you very anxious and depressed also as it's always a battle and waiting game
You are anticipating bad news or them needing more info, and you are more times right than wrong

Appointments can be good or frustrating
Drs mostly on our part listen and are very helpful as are therapists and teachers but then you get one who might just not really listen and offer you useless information or ask you to try something that's impossible to achieve in your  families circumstances, and you just want to thump them.  They heavily rely on their books for answers not their brain.
I hate these people
Autism is not written, it is felt, experienced and  witnessed, you can not learn from a book

I'm living with autism a long time and even I'm no expert and I'm still learning
I know nothing yet I know something
Every day you learn something new in this life
But at times you feel you know more than the supposed expert your sitting in front of and your baffled at their ignorance and lack of common Sense

Not all are like this and thank God I've come across very few but they have upset me greatly when I have encountered them, which I always write my letter of complaint to the head of whatever and ask for them to be removed from my child and my family as I am entitled to, and yes they get removed as I won't drop it till they are gone

No one and I mean no one needs to put up with that bullshit on top of everything else they are going through
Always take up the offer of social workers if they are offered with your services, never fear a social worker
They are your back up voice and support system, I am in awe of my children's social workers and all they do and put up with
They are amazing

Always remember you are your child's and families voice, if your not happy and you feel angry, make it known, do not take it, stand up for yourselves
You are your child's voice and advocate

They can't help if they can't hear or see you

Yep angry
We all sure do feel it don't we