Powered By Blogger

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

Asperger's
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

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


Inhome / Inhome workers

What is it and who  are the people who do it

They are someone we pay to take our child out for a few hrs either each week day for  the twins  and a weekend for preteen

Weekends are particularly hard for preteen as he simply cannot tolerate the twins for long periods of time sending the house into meltdown and uproar,  when one starts it's like a competition to see who can out do the other In  the screaming and crying stakes

Preteen Is a very busy young man, he needs a lot of activity in his day and stimulation
He is a worker, grafter if you like
He likes to get down and dirty and pitch in

During the better weather we always have him out on his 13ft trampoline and in paddling pools but he loves chores
We give him the hosee, watering cans and the power washer to keep him busy
He waters the plants (drowns the plants) and loves making big puddles in the garden
But it keeps him happy so we are happy
Sometimes I give him the hoover in the house and he helps me out hoovering the car etc
He also does the dishwasher and puts things in the bin for me

Last year I got him and my 9 year old gardening and working together
He now tolerates 9 year old cause hes older and calm, he used to really really hate him
He tried to evict him once, long story but yea he got all his toys and fucked them out tge front door no lie
I also got them cooking and baking together, again attention span and meltdown pending.
And Yes it is thanks to cbd usage

But on his weekends he does real work
He loves farming, he fills the meal for the calves and gives it to them
He also goes to stables and helps out cleaning the yard etc

The twins
My girl gets girly trips with her inhome worker, she goes shopping and to cafes and goes visiting to get spoiled and I mean spoiled

My boy has been adopted almost by his Inhome worker, jesus she picks him up and disappears till all hours lol  she has a 3 year old and her little boy and mine love each other, they also kill each other but that's great as means it's age appropriate typical relationshipship

People often say omg that's so much money, are you mad, no I'm really not
Firstly for sanity reasons we need the break as much as they do but
Id kill to do all the above with my children
Id love to give them those opportunities
But I can't, between sleep deprivation, appointments, my other two kids and after school activities etc it's impossible to give quality time and meet individual needs
I want them to be part of their community, familiar with many different surroundings and activities
So yes Inhome is worth every single penny we spend

I love knowing my kids are safe happy and getting enjoyment in their life, I have amazing Inhome workers who treat my kids like they are their own kids
Without them our job/life would be ten times harder

Respite and thank god for it

We are forever greatful for our respite and we know how lucky we are to have it

We got respite as a result of a crisis
I was pregnant and my son was aggressive towards me which put me in hospital as I was solo parenting 2 days a week as hubby was away working those two days every week
We started off with 2 days weekly than this progressed to an added weekend a Month  a few years later when twins came along

Unfortunately we are now needing more and are in crisis yet again with horrendous and dangerous sleep deprivation.  We are still in receipt of sons respite but we have none for the twins, we are eagerly awaiting it to start for them in July as they will be 6 years old then

While we get respite we don't at same time,  while one is away the other two are here

We still don't get to switch off, sleep or do anything with our non autie children
They suffer so much as does my teenage daughter as she  can't sleep either because of them, they keep her up all night too, she is exhausted and this also affects school and consentration

When we get the opportunity to be autism free and the money is saved up enough we go mad, we go to two cinema movies instead of just 1
We go for a Chinese meal and go all out
We try go to really cool places with really cool activities like tayto park, bundoran, fota wild life on the weekend.etc
We try make it count as it's so rare we get out like that, we live for every second we have, we do be exhausted but it's worth it

If we go away for a weekend we need my supermum to move in which means her poor dog boards in kennels
We need in home workers to take kids off for few hours each day to let my mum recover as those twins  are seriously hard work and she won't get sleep, my mum is in her 70s

We need to plan the trip like a military operation, serious strategic planning
And there must always be a plan B and a plan C never just a plan A
There is no room for error or sickness
Ie preteen too sick for respite or my little boy taking a hypoglycemc dip.and needing hospital

we need to swap save and change respite also to accommodate for school holidays like midterms, Christmas, Easter, Halloween and summer, we gotta forfeit to store for them and swap and change to suit them, its a nightmare, I have to be so on top of our shit on 0 sleep , lack of forward planning and organization will wipe the floor with a special needs parent

Then we have the solo respite holidays, this breaks my heart and upsets my kids
My kids are half German half Irish
Their dad flies home once a year on his own to get some quality respite and see his family, this is so important for him as he is a full on hands on night shift dad
He changes nappies, showers kids, makes the lunches, does the laundry, washes the dishes, empties and fills the dishwasher and does the night shifts
This guy is my carbon copy but male
He is superdad , and he needs a break
PS we don't do man flu, that man would be on his hands and knees still getting the shit done. And yes literally once he was on hands and knees sick with a vomiting bug doing what needed doing

I then go away with my mum and my two non autie kids, we go away for a good 10 days or so and we make every minute count, we do sun and pool and every activity the country has on offer
We don't get to do this every year but we do it as much as possible and when we don't go abroad we travel the west or Dublin doing as much as we can
The aim of the game is fun and making every second count, again this takes strategic planning and respite and in home

Respite is like a lotto win
You just go mad and enjoy every minute
You'd be crazy not to

Sibling loving

The one thing I cling onto in our chaotic life is seeing the love this family has for each other

My 18 and 9 year old have an amazing relationship, their not really ones for fighting with each other, they do like to annoy each other for the fun of it but no fighting or name calling, hitting etc
They do mess fight and fart in each other faces etc

They share the same armchair and they take selfies together, play games on the phone etc together and snuggle up and watch DVDs together

My 9 year old is also great with the auties, he's always giving them a cuddle, playing with them and you'll catch glimpses of him Sharing some chocolate or crisps with them from his party bag or treat he got in the shop

My 18 and 9 year old also understand how tired we are, they help with chores like putting clothes away, cleaning the house, helping put away the shopping and making school lunches, they'll also help out with dinner prep and load and unload the dishwasher

My 18 year old changes her fair share of nappies and helps with bathing the twins and the usual every day tasks
She'll make an awesome mother some day and her brother will be a very good husband
He is his daddy's son that's for sure

They are just so loving and considerate of each other, their autistic siblings and us their parents

They make getting through it easier, we really couldn't do it without them
We always make jokes about the team work that goes into everything, how everyone has their role

Like cleaning a shit smear, we all have our station and rhythem and gastric bug, again we have our stations and it makes getting it sorted ten times faster, we are like a tag team

I try spoil my 18 and 9 year old a bit to let them know they matter and are loved and appreciated, I think this helps the balance as their life is no ordinary life, they take on as much stress as we do, I think it also makes them more willing to help, they are not being taken advantage of, they are not told or made to help they are asked and offer, and are rewarded for it

We seem to have a good balance and we're the type of parents that allow our kids to speak up if things aren't great and ask how can we make it better, there is not much fighting from anyone in the house

We went through a horrendous argumentative phase with DD between the ages of 7 to 15, I honestly didn't think we'd survive it but was pure anxiety as she can't reason or rationalise
Cbt has helped with this over the years as has prozac, that's her wonder drug
CBD did not work for DD, it heightened her anxiety and made her very paranoid and on edge

We may have the craziest of moments in this house but there is a lot of laughter around those crazy moments

The shitty side of sensory processing disorder.  Literally

Shit smearing, oh how its the one part of SPD that tips me over the edge

I have 3 in nappies, 2 smear
Its just ridiculous, apart from a straight jacket I'm not sure what to do

At present my preteen is wearing a wrestling suit underneath his PJs, it contains the shite at least, but doesn't  prevent it,  it does however distract him  and yes, to add further insult, of course he's on movicol

My 6 year old is trickier, she is Houdini and can get out of anything, I actually am convinced she's double jointed
Her and her twin brother wear a uva all in one  swim suit backwards, underneath is a popper vest (thank you marks and Spencer's) and a pair of boxer shorts, again it distracts but does not prevent

There is nothing worse than a 3am smear, that's a pure killer, and I can't go back to bed until child, walls, floor, window, bed, linen, curtains are stripped and put in the wash while new ones are put back on

Now I've had one child smear, and while I was cleaning that one the other child also smeared, you'd be near suicidal

My 6 year old is also a food smearer
It drives me demented

I'm 10 years into smearing, its painful, you'd think in those years I'd have learnt all the tricks, no, I'm still baffled.
I do the sensory play, I do the sensory brushing, you name it we do it

Nothing works

So we just hope and pray for them to grow tired of it

Still waiting

Assistance dog

We waited 3 years for our superhero to arrive, we had assessments and attachments  to make sure son was a candidate and to find a good match etc

Eventually we where called for our attachment and corse , we stayed a week in cork getting to know our dog and learn all the commands etc
There is a lot more to it than that but pritty much how it went

It was an instant success, child and dog where a dream match, they soon even learnt to work semi independently (always supervised)  the dog thought my preteen so much
He now no longer bolts, runs off or tries to dive into lakes and ponds

They are not friends or needing of each other, the work jacket goes on and they both know their job and what's expected
Jacket comes off they go their separate ways and are happy out
They don't look for each other outside of work

Preteen will sit beside the dog at right and the rare time pet him, only because the dog refuses to get off the couch so it's sit beside him or nothing
the twins just like to push him out of their way

Our dog is now working with my 6 year old boy, again instant dream attachment
No problems or hesitations
Again jacket on means work, jacket off means see ya later, again no great attachment or need for each other

To be honest I'm actually glad as one day  our dog won't be around anymore, I don't think an autistic child would ever get over that if they where heavily attached

My dog will often sit outside the room of a child in meltdown and look on, he will alert us if child is doing anything dangerous, he will stay till the child has calmed down

He does love them and he does love when they accidentally drop their cookie or toast, where a child is eating your sure to find my dog beside them

They are an added expense, 2 vet checks a year, specific food, they do need to maintain a certain weight and coat, they do need to be groomed and walked daily
They are an added stress at times but they are also a god send and i wouldn't be without him

The monotonous eeeeeeeeeeeeeeee

One of non verbal autism's annoying traits, well it is for ne

Why?

A noise going off in your house, the smoke alarm for example
OK for the first few mins you laugh at the fact you can't even be trusted to make toast, duh  but the sound is penetrating your brain and you are fairly anxious to switch the damn thing off

Or an alarm goes off on your phone but you can't find the phone, your fumbling around to find it as its driving you mental
Or a car alarm at night when all is asleep, you terrified its gonna wake a kid and your cursing who ever owns it to switch the fucker off

But what if you can't switch it off, it doesn't have an off switch

Yep frustrating ain't it

You finally settle down, the twins are in bed jumping round the room safe and sound, everything is done, they are fed, changed, medicated, you just waiting for the drugs to work and take them down

Preteen is different, preteen fights the sleep to the last, he falls asleep on the couch and we take him to bed, look it ain't right but that's the way its gotta be
Preteen loves cuddles and a foot rub,
Your watching TV all chilled, in he'll come with his tablet playing fruit ninja, the volume full blast, sometimes hel have his phone as well and youtube clips are on a loop, that's enough in itself to get ya twitching
The foot is flung onto your lap, the bear wants a foot rub, never aggravate a tired sleepy bear
But while fruit ninja is at full volume, youtube on a loop and no matter how many times you lower the volume, back up it goes
The monotonous eeeeeeeeeeee starts

Arrrrrrrrrr eeeeeeeeee uuuuuuuuuuuu
Yummmmm eeeeeeeeee arrrrrr
Its just a straight long pitched tone
Your already twitching from the poxy ninja and now you got this, your tired as your up since 2am, you've changed at least ,12 nappies, I'd say 8 of them where shitty toxic foul nappies and your on your last nerve and this is going on, your beautiful son demanding his foot rub and vocalising away to his hearts content

I love our cuddles but I wish he didn't bring the tone, it gets in on your very tired brain and you can't switch off from it, you try but you can't

This is the first time you've sat, you've heard and seen nothing but cbbs from one room and nick Jr in the other, you've gone through a fair few meltdowns, maybe an injury, tantrum, demands where made and met, you've chased your 9 your old to do his homework, you've done the soccer run, you've been shopping and put it away, I hate this job, you've made 3 different dinners etc etc
Your exhausted, greys anatomy is taped and your dieng to just sit with a HOT uninterrupted cuppa cause you just can't cope with another Luke warm one

You'll do the foot rub, you'll even do the leg squeezes

But fruit ninja, YouTube  and the eeeeeeeeee

Come on, really

Nope

Joy

The hidden financials

You often hear special needs parents mention the financial impact having special needs children places on a family but the details are never really given to show where the money goes
I'll tell you from my family's view

Food- an autistic child eats a lot, especially the ones who have a similar appetite to that of a child with prader Willy syndrome

My preteen is one of those children
He never stops munching and can get quite stressed and aggressive when you try to stop him

He eats a never ending supply of dry cereal, he uses this to snack on
He eats pasta, rice, biscuits, meat, cheese, crackers, chips. Bread,  Nuggets, pizza sausages, eggs, potatoes, fruit, miminal amount of veg, crisps, popcorn around the clock
A lot of his food is healthy but not in the quantities  he consumes it and some is really not healthy but we try as much as possible to only have the healthy on offer , but you must pick your battles, the stress is sometimes really not worth it especially when you have to consider sibling feelings and mental health

My food shop bill is at least €150 to €200 a week  so €800 a month

Meds, thankfully we have the drug hardship scheme and a medical card so we are capped at €25 a month
But that does NOT include  calpol, cough meds, skin creams for exzima, nappy rash creams, bottles of nurofen, paralink, the Apple pouches my son needs at 3am for hypoglycemia etc.  That's all extra and can run into €50 a month or more
CBD oiil  is €140 a month
Totals to at least €215 a month

Nappies, disposable gloves and wipes
We have 3 in nappies, their nappies are toxic, gloves are a must
We get nappies from the hse but we do not get near enough to last the month
Preteens nappies can be bought in boots at €13 a pack and we need to buy 4 per month  €52 sometimes we need more than that
For now the twins nappies can be bought in lidl  at €7 a pack and we need to buy 4 also a month  €28
Baby wipes, we need lots and lots of baby wipes, thankfully we can buy these in aldi at €4 for a pack of 4, we need 8 packs per week  €32
Gloves can be bought in local discount store, we use 2 boxes a month €6
Total €118 a month give or take

In home support
We get help with this but not as much as you would think

We use more in home than we are allocated as it's the only way to survive
We pay €10 and hr and we get €6.50 back off our allocated hours only

Preteens uses 20 hrs a week in home
That is 200 a week
Girl twin uses 15 hrs this is 150 a week
And boy twin the same 150
€500 a week  paid monthly 2000 sometimes more depending in school holidays
We get maybe on a good month €850 sometimes more back and again more if on school holidays
That leaves is paying €1150 or so

So that's the standard extras

Now
Clothes and boy does my preteen go through a lot of clothes, so much so that for birthdays, easter and Christmas he is given vouchers by my family and friends and the twins also
Thankfully if preteen hasn't wrecked them I can pass down some to 9 year old who passes down to 6 year old boy
I have started keeping my teenage daughters clothes for my 6 year old girl also
I do buy their clothes from littlewoods and tk maxx, sports stores pennys and the diesel store , those vouchers are a god send
I also need to buy specific clothing from special needs ranges like popper vests and PJs
We also need to purchase wrestling suits @ €50 each for preteen to wear under PJs to prevent smearing and leaking and all in one sun suits for twins for same reason costing between €15 and  €20 a peice

Shoes, nope no ordinary shoes from penny or Dunne's here, not for fashion purposes but for support issues
They wear special orthopedic shoes from HSE but by time they arrive its so late they have almost grown out of the size as it took that long for them to arrive so you have to buy really good boots in their place like timberland, kickers, hi tec etc   these are horribly expensive boots, all their shoes must have a solid high back and good arch and ankle support as my kids tippy for walk and cause damage to their feet and ligaments
One pair of boots can cost €110 and I have 3 needing these specific type shoes

Phones, tablets and consoles
Yes this is ridiculous you might think, but it is not
Technology is the way forward for our children so tablets or phones are a  must for the autie funky bunch

Preteen has a phone for respite, a tablet for school and a phone and tablet for home, he uses these for playing games, YouTube, Netflix  and for communication purposes

The twins are also learning to do the same, for their birthday they will be bought a tablet to keep in school and a tablet to keep at home for communication purposes

If one breaks its replaced straight away as its that important as is consoles being used for Netflix and YouTube, the need for their TV shows to be played on a loop is very important, they become obsessed with programs and  want to watch them over and over again on a loop.  consoles, TVs and HDMI connectors are a necessity not a luxury
And they are expensive

Now we need to look at furniture, windows, doors, toys, sensory equipment, educational resources etc

They break a lot of stuff, A LOT OF STUFF

Trampolines are a necessity for a child with severe sensory processing disorder, but they need parts replacing all the time, safety nets, jump mats, safety surround mat that covers the springs, the springs them selves and even the frame, sometimes they get so damaged you need to buy an new one completely

Swings are so important, the older they get the more specific the need of the swing is, the durability needed changes as does the strength of the frame

Ball pits, yes they bite the balls and they need replacing, those balls are not cheap.

Toys and disability aids are shockingly expensive, a simple hammock swing can cost €800 plus, a dark den €1200 plus fiberoptic lights €1000 plus, a bubble tube €1000 plus
Sensory lights, the cheapest come in at around €300 or so
Then there are weighted blankets and weighted vests, they come in at about €150/€200 each, lap pads €80/each, wobble cushions about €70, harness for table chairs €40 or so
Harness for car seats €100
Projectors can come in at €500 to €1000/plus

Other toys like lava mats, fidget toys, toys specific for gross motor development, cause and affect toys, phonics toys. Its endless, crazy crazy money

Windows do get broken, doors do get damaged, furniture takes a fierce battering as do beds and TVs, TVs don't last pissing time, between shoes, toys and body's being slammed at them their shelf life diminishes drastically
These items need regular replacing and for safety more than luxury

Before you buy furniture especially beds  you have to check the wood and the quality of it, you have to check that it can be screwed to floor and wall, that it can take trampoline type bouncing, that it can't be easily moved, that it can take a lot of wear and tear
You also need waterproof wipe down hospital type mattresses
I have had to replace tables, chairs, couches, poor couches don't last very long, they take serious abuse, floor tiles, I had to put a wooden floor over my floor tiles as they where so badly damaged and broken leaving them sharp and dangerous , kitchen presses take a fair oul bating too
Washing machines and dryers, oh my god those poor domestic machines take on the abuse intended for industrial machines, this drastically reduces their shelf life to barely 3 years usage

My autism assistant dog
Food €70 a month, 2 vet checks a year, 3 professional grooms a year, vaccination and boosters, flee and worm. Treatments
He's an expensive asset

Cars, between insurance, nct and tax alone its draining but when you bring in petrol/diesel/repairs, new tyres etc forget it, they are
 Financially crippling and when you can't survive on one car alone omg mental money, especially when some appointments are 1 to 3 hrs away and you have kids needing picking up in other schools
I'd kill to cut down to one car but its impossible especially when one child has a life threatening illness needing urgent medical attention and hospital intervention

Autism is relentless and the financial impact is overwhelming and your in crippling debth but sure what can you do

Nothing, you just pray you can meet your repayments and that nothing else breaks, but it always breaks
ALWAYS

Bank holidays and school holidays

Autism takes no prisoners, well yes, yes it does

Autistic kids and days off school is a recipe for utter disaster, especially in this nut house

My 3 auties hate noise, hate busy unpredictable movement and hate lack of routine, but most of all they HATE each other, and yes I mean they HATE each other

It already starts when no bus shows up, literally as early as 8am
The shouting, pacing, constant grabbing of the jacket and bag, throwing the shoes at ya to be put on

Then the twins join in for shits and giggles, and we all start rocking in the corners or hiding in the toilet or fighting over who gets to go to the shop for milk and bread that we have conveniently run out of, bull shit we poured half a litre down the sink and fucked the bread out to the birds just so the excuse of needing to go to the shop was there
You know those 1 hr shopping trips

Escape is a wonderful thing

We have preteen who is running from his yes HIS sitting room to the sensory room all while raiding the fridge and presses, often seen with a cereal box under one arm and his tablet in the othe, top rolled up, tummy hanging out and mumbling (vocalising) to himself
Shouting at the twins if they breath, yes BREATH in his direction

Preteen uses nursery rhymes, YouTube clips and his favourite lines from TV programs to communicate

You'll here songs of it's my birthday, happy birthday, it's my special day, this basically means I want cake, sweets, crisps and you all must fall at your feet and love me and answer my demands

You'll also here who is that scary monster that lives her, basically this means his little brother or sister, it also means remove it please

If his daddy is missing on the toilet for long periods of hiding, you'll hear ooooh where is the fat controller gone
We must fetch the fat controller
Meaning I don't want this woman who dared say no to me, get me the yes man, you know the nice one

And so on and so on

The twins are separated also
One twin In OT room and the other in our sitting room or playing with toys watching DVDs in their room, often their preference as further away from the noise  of the others

We have CCTV in all of their bedrooms and therapy rooms so we can have eyes everywhere

These days off are loud, mischievous and often aggressive, the auties are frustrated and are like caged lions and bears

The food needs to be on tap and in ready supply, the internet needs to be fast and the chocolate stocked up

Inhome support workers need to be arranged and available to have kids out of the house for a few hours each to give them a change in their day
Inhome is our saviour and we appreciate and  love our support workers
We couldn't do the job we do without them

Always and I mean always cherish and respect your inhome worker and the job they do as that job ain't an easy job

So yes when your making snow men on your snow days, at your saint Patrick's day perades, Easter activities and play centres having a great time and on your summer outings and holidays making memories we're at home rocking wondering should we be medicated to survive it and counting the days till they are back in school

We do try get out with them esp the twins as going out with all 3 will never happen for safety's sake but we can't do anything traditional and crowded, everything must be autism friendly, even things so small like the wind can upset the twins, they are that noise sensitive

School, we love school and our kids teachers, we love them too
And we also love airc Midlands and other organisations like them for  all the work they do and activities they plan centred around activities for children with special needs and their siblings together
With out them we would have very little we could do as Family at all

Cbd use

Yes I use it and buy it by the truck load, it costs me a fortune but its worth every penny

One bottle is €35 and we use 4 bottles a month for 3 children
,€140 a month

My preteens usage is heavier than my twins usage
Preteen is on it 3 times a day, sometimes 4, stress levels depending and twins just once a day and that is plenty for them for now and works great

We saw the results straight away with preteen, we where astounded
He was Calmer, SPD was calmer, he understood more of what we where saying, meltdowns reduced, he started communicating more, he was more capable of independent skills like putting dishes in dishwasher, getting dressed, using a spoon, his coordination improved, he started getting more adventurous with food, he was able to cook with one on one and hand on hand assistance
I can't highlight enough how much CBD changed preteens quality of life and ours

A good time after i started the twins but it was impossible to get it into them, I couldn't even hide it in food

The company we use brought out a new milder tasting clear version, we had nothing to loose so bought it
Could not believe the twins actually took it , no fighting and looked for another dropper full, result, delighted

We didn't see the results straight away like preteen, but after a week wham, what a difference
Calmer, more interactive, understood more, communicated more, attention span improved, they started to follow patterns more, like first comes socks, then shoes then laces
Everything started making sense, they could sequence and anticipate what was to come next
They have even started vocalizing more and some words are starting to come out
taking them to places like shops and restaurants are easier now as the SPD is calmer with the cbd oil

Don't get me wrong, we still have challenging behavior, we still have meltdowns, we still have self harming
We still have aggression

SPD is still rife in other ways like hair cutting, showering, noise, etc

CBD is not a cure for autism or SPD
It just helps with it and can mildly reduce it

I'll take mild reduction over full blown any day




Medication

I'm all for it, sleep meds, respiradone, cbd, prozac, phenegran you name it

YES and here is why

I was a NO person for years and I struggled all through those years needlessly

Why?  Stigma, hype, guilt .basically stupidity, lack of knowledge, ignorance
Who am I to tell my child he/she can't have the meds their body is begging for
How bloody dare I

My child is self harming, ramming his head off walls, floors, windows, concrete steps, bed frames you name it his head bounced off it, and at full force too
I've seen my child bite his arm so badly its bled and then go back in for more
I've watched my child punch himself hard into the stomoch, thighs, head, mouth, eye, everywhere
My child put me in hospital twice while I was pregnant on his brother now aged 9, he knocked me on conscious also when pregnant while wearing plaster Paris on both his feet
He landed me in hospital twice while I was pregnant on the twins, causing me to bleed in the very early stages of the pregnancy

Why

PAIN, the child was in excruciating pain
Constipated, impacted, again that's a post all to itself

But also the child could not regulate himself, he had pressure building up inside and all he could do to release it was punch and hit the parts of his body that was annoying him

He was hyper even when he didn't want to be, active when he was exhausted
Cold when it was summer, hot when it was winter

All his senses where completely confused, not sleeping was a added factor, that messed his body up completely , he never slept and was up every night for good at 3am

We where at a point where it was dangerous to have him around our small child and my pregnant self

You have no idea how it feels to be afraid of your own brother or son
The fear was immense

Life was hell, he was attacking bus escorts, students, GPS, paediatric drs, peers, siblings, parents

The hardest part was knowing he didn't mean it but he couldn't help it, he was
Upside down in himself, it was affecting school, home, everything
He is the kindest happiest boy, he would hurt himself before others so to see this behavior was so difficult

He was referred to a psychiatric Dr who recommended sleep meds and respiradone

The behaviors didn't disappear but settled, the outbursts became less aggressive and life became a bit easier
We where granted emergency respite
Of two nights a week, this was huge for us

Things where moving in the right direction thanks to the right medications
They helped get our little boy back, he was so much happier in his own body, he was feeling good and you could tell

Medication
My advice
Don't fear it, try it, it costs nothing to try something

I will write a post on our 3 cbd oil successes shortly

I highly recommend cbd oil

Crippling anxiety

My daughter has suffered with anxiety since the age of 2 but we never knew it was anxiety, we called it terrible twos times ten, she was hyperactive, aggressive, didn't sleep, willlful, head stong
She had a fear of escalators, sliding doors and glass buildins
She was very impulsive

At age 4 she changed, hello challenging behavior
In school she made her self invisible so no attention was drawn to her
Her teachers spotted it not me, I was struggling with her behavior which I couldn't get my head around
Street angel house devil is what we  described her as
She was like a shook coke bottle
School was with the lid on, home is where the lid came off and exploded everywhere, it was like her inner volcano irrupted
Her teachers where shocked at how i described her at home and us shocked at how they described her at school
Massive contradiction
We worked together and this lead to assessment discussions

We unfortunately moved counties mid waiting on lists.  She struggled so so badly in her new very large  school and she became so anxious and overwhelmed
They also recommended assessment
I moved her to a tiny country school
Big mistake but I didn't realise that till much later
In a big school or medium sized school you have escapism and options
There are more friend options
In a small school where there are 30 in the whole school it's disastrous as you have no escape , but the resources and interventions where better, you can't win, what you think is good is not always the case
My DD was heavily dominated by a girl in the school, her anxiety got so bad she was sick a lot, belly aches and head aches, typical anxiety complaints

We got her assessed and low and behold we got a shock of our life
Our girl had more wrong than we thought and finally everything started to make sense, all those struggles all those years and yes, this was why and I finally understood my DD

I won't go into too much detail of her DX as she's now technically an adult
Her iq is is above average just a few percent below superior, she's no Sheldon Cooper but she is one very intelligent cookie.  She needs routines and is a visual learner.  She needs schedules and written reminders for everything and even they don't always work, she is very forgetful. Her mind races from task to task so she finds it hard to focus on just one, she can't even watch a DVD from start to finish

Secondary school was disastrous, the more the years went on the worse the anxiety became, she is on Prozac daily possibly for life.  Her treatment was only ever for anxiety and not her actual DX so this just made life impossible for her, not her fault but camhs fault. School refusals also became a regular and imaginary illnesses

She is soon to leave school and start a new education path in the national learning network, we feel this is the best way forward for her.  Since she has been doing less and less time in school she is so much more calmer and happier in her self, her confidence and self esteem is starting to come back, slowly but its getting better

Some causes of dds anxiety

Peers: why?  Dd is a rule follower, she is very kind and gentle mannered, she can be naive and aloof so peer personalities just don't work for her
She is older than her years and has had huge responsibilities early in her life with having special needs siblings, she by passed teens and went straight to adulthood, that's not a good thing, it's ruined it for her even maintaining friendships, children need to have a childhood, it's no one's fault but more support for siblings would have helped tremendously

Dd finds crowds overwhelming, a coping mechanism of hers is to switch off and pretend she's not there, become invisible by bringing no attention onto herself at all
She can't read body language
She can't hold eye contact
She can't keep attention to tasks
She feels dizzy and faint in large crowds
She can't understand irresponsible and reckless behavior
She cant understand sarcasm and takes things literally
If she sees peers in the street she will cross the road (and often without looking left and right) in a panic to avoid them and not cross paths with them
If we see peers in a shop she freezes, gets clumsy and panics

But what she can do

Maintain an extremely intellectual conversation with adults, adults are blown away to realise an 18 year old has such a grasp on life and politics and an understanding of adult life in general

She can look after 2 autistic 6 year olds solo and cope extremely well

She can change nappies, make bottles,.bath a toddler, dress a toddler
Special needs or other wise and function quite extraordinary in an adult type life

She has the ability to understand non verbal adults and children, use pecs, and other forms of communication

She has the Patience of a saint, she is so good with adults and kids with special need's

I can't even begin to tell you enough about her and all she is capable of

She is a volunteer with the special Olympics
She helps a girl 1 day a week with her homework
She helps a mum with her 4 home schooled children 1 day a week also
She is in high demand as a babysitter

She is also a junior carer here at home
She is as much a carer in the house as we are to her 3 autistic siblings

She has an uber stressful home life yet she still finds time to volunteer and help others,  she is the kindest most loyal loving sweetest girl, she is simply amazing

Anxiety has robbed so much from my gorgeous daughter
I just hope she finds a way to fight it and get all she lost back , her self esteem and confidence for one