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