Friday, March 23, 2018

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

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

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