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

Christmas

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

Anger

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

Emotionally drained

Yes every parent of a special needs child is and that's ok, yes it is normal and yes it's ok to say it

Acknowledge your feelings, own them, explore them and understand them then move on with your day, job done

There is this strange stigma that us parents need to remain strong and we tend to pretend we're ok when we are truely Dieng on the inside

Fear is a horrible feeling and we're afraid to admit our fears out loud for fear of being judged, and us parents always live in the fear that if we say how we truely feel they will think we're not coping and take our kids away

Firstly, let me just say, there is no where to put our kids safer than our home with their loving parent so don't fear that nonsense, and there is definitely no money to fund them being taken
Let's be honest here, I've read harrowing stories of parents begging for help and nothing as ain't no money to provide the help they need

Fleeting thoughts are normal, they are a brains way of filtering out it's nonsense
It has to release it somewhere at the end of the day, better out then in
People are afraid of their crazy thoughts, for fear they are crazy
Your not crazy, your normal, your brain reads and absorbs at an alarming rate, especially now with social media so accessable, you scroll though all sorts on face book, of corse your brain gonna retain some of it, some things on face book are disgusting, then you have the news, news papers, conversations
Give your brain a brake for all the madness it feeds ya, your brain is exhausted and overwhelmed, as are you it's just releasing it all back out before it explodes, your normal, that's normal and yes your not a lunatic and about to go on a killing spree

I have days where I'm floored by tiredness and I just lie there thinking I can't do this shit any more, not one more day of it, I get the panic of, what if things get worse not better and no more help is coming, were fucked we are simply fucked, I beg for more help but it  just ain't coming, what more can I do
I know, I'll load the car up, all of us in it and drive at high speed off a cliff
That's the only solution I have

Now let me say, that's never gonna happen, have you ever tried to load one people carrier with 3 autistic kids that hate each other and drive with 3 autistic kids that hate each other, trust me
Nothing is worth that torture

Am I ashamed of those mental thoughts
Nope, why? Cause its my processing of my situation, because I talk myself down
I love my kids, and I gotta be very honest here, they are seriously stunningly gorgeous kids, I mean seriously
We got the looks in that gene pool, the rest of the genes got a bit fucked up but yea we defo got the looks

My thoughts are mine, that's my protection, because I automatically think, god could you imagine just getting them in the same car let alone the drive there haha, preteen would probably already have bludgend one to death before we left the drive way, then I smile at the madness then I end up laughing at the craziness and then I'm like awww look at my gorgeous babies, awwww
They just too damn cute, loud but cute
Maybe we'll survive just one more day

Now you can read that and go on a mad one and be like omg what did she say

Or you can read that and think yep been there

Or you can laugh with it as there was humor intended

Allow yourself to be down in the dumps, pissed off, angry, fearful, drained, tired, hopeless for it's these emotions that I push us on to better places and want to be in better places
We handle it and learn from it
We succeed at turning a bad situation into a positive one

My kids come with the most exhausting challenges but they are happy, very rarely you'll see them at their worst as their mostly at their best, they have different points in the day that leave shaking with stress or ready to jump off a bridge but then the rest of the day their humming away, laughing, jumping
Or they do something mental that you can only laugh at cause your all cried out

Emotions, we all got them, everyone has some battle they are fighting, everyone is fed up with something or someone, stress is just a normal part of life now, some have it worse that others, but never be afraid of to say out loud how you feel, its important to talk, vent, rant, ask advice, look for support, that's what gets us through it

We're only human

Battles

We all have them and we all need to pick them, one of my biggest battles is working v being a carer

I loved working, I loved my wages too

I'm a carer a very long time now and I know no one can do the job for my family like I can but its not something I enjoy doing 

I love being out of the house and busy and I love to study, I've done a lot of studying over the years 

Some days I'm content and just get on with it but some days especially the bad autism days I can get quite depressed wondering what could have been and why I made some choices I made and why I can't just get over it and accept it 

I'd love to work but the situation I am in is that it's impossible, I have 5 kids in 3 different schools and one of them Schools in a Hrs drive away, if preteen is sick and needs collecting thats a 2 hr drive 

My 6 Yr old has a life threatening illness that can happen  at any time and Needs immediate hospital intervention 

The appointments are relentless, some weeks you can have 4 in one week and always a fair oul drive away and others you can have 3 in one day 

It used to be much more but now I refuse to go to some especially if they are not extremely important or I know it will be just a straight forward catch up type thing even ieps, I have 3 of them, now I do them over the phone as its just too stressful to find the time to attend, I have great schools and teachers who understand and accomodate this

Then we need to factor in the severe sleep deprivation, that's a real killer and there is no way I could maintain employment with little to no sleep, I can barely maintain being a carer 

Sickness, lots of it, it's like a never ending journey 

Because I have 5 kids in 3 different schools that bloody vomiting bug just won't shift once it lands, one will be better and the other one falls, we struggle so bad with this bug as we get it also and still need to care for 3 severe autiistic kids 

Sinus infections and viral infections are also never ending especially this year for some reason. 

Weather warnings, yes and there have been so Many, schools close and rightly so due to severe weather warnings, parents need to stay home as their kids are out of school 

School Summer holidays, yes they are long and they are chaotic especially in an autism household, even Easter and Christmas holidays seem to have gotton longer, what is that about, they're only back from them and they are on a midterm of a 2 day break then the bank Holidays which most parents have to work then the in service and training days 

Its mental carry on, it's not as if we can get childcare for our special needs kids 

I don't know haw people manage to maintain a job in general with small kids but with special needs kids 

How? 

I have tried and failed miserably 

I've plotted, schemed, researched for a way I can work and it's just not possible, it will never happen, not with our circumstances 

Even hubby can't work for all the same reasons. 

If we had just one autistic child we could send one of us to work, but with 3 

Impossible 

Its very hard to accept that, especially when you struggle financially with the expense autism brings, we don't drink, dont smoke and get out very little and still we are financially strained 

Every resource we have goes on our kids and extra help needed with our kids 

Dca, children's allowance all goes on Inhome and loan repayments for money borrowed to adapt and autism proof our home 

We try get a take away once a week for a family night just so my non autie children have a treat and some form of normality 

We try get to the cinema once a month 

Again so they feel normal 

But we as parents do not feel normal, we give everything we have to our children that we forget ourselves 

Mental health is so important and problems, emotions etc can sneak up on you when you least expect it 

I can go long periods where I have no time to think. What ifs and I'm planning the next week like a military mission. 

But then il find a spare few minutes and yep i start thinking all the above and it sucks 

I hate it, i hate feeling the way I do but it's my feelings, my emotions and I need to deal. With them and try put a positive to the negative 

Yes no one can do the job I or my husband can do For our  family