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Special needs parenting - where rules don't apply

Special needs parenting - where rules don't apply

Now I'm not saying that we exist in some sort of alternate reality, but what I am saying is that you can take almost everything you thought you knew about raising a child - and subvert that.

There are so many times everyday where I think to myself "this is not what I expected" or "this is the opposite of what other families do."

Think of all of the cliches you were told whilst pregnant. "Get used to the idea of lots of nappy changes!!", "your washing machine will never stop!" down to "it gets easier when they move onto solids and start to be able to feed themselves.

Or "after a while they start to sleep better at night." Nope, nope and nope, 5 years on and the rules don't apply here, it's like we are trapped in time except for the fact my "baby" has become a lot bigger!

Nappies are still a daily thing, in fact they're everywhere. I could build a nappy castle!! We get delivered a 4 month supply each time and have to feverishly try and squash 28 packs of nappies in every nook and crevice around the house. Free insulation you could call it.

Sleeping through at night? Nope! We have melatonin and valium, enough to make me sleep for a month and yet here we are, awake excited child wanting to play all night.

People use that term "it takes a village to raise a child." I've lost count of how many times I've wished I could clone myself in order to meet my daughter's basic care needs.

It takes multiple hospitals, specialists, carers, nurses, doctors, drivers, assistants and so on - and even then you can feel the purse strings of the "system" wanting to cut services and provisions.

We are lucky to have what we have, yet with all the help in the world, this still is far from plain sailing.

Struggling for money? Then get a job. That's what the world says.

But here the rules don't apply. How on earth can I get a job that fits around school hours and doesn't mind that I may need to constantly say I can't come in due to x, y and z reason.

If I could secure a job - where does she go in the holidays? Nowhere can medically accommodate her care needs, or provide hoists.

I recently saw an article about a place of work providing a creche for both during work hours and also so parents can use the on site gym. The rules don't apply to parents like us.

I see so many things and think "wow that's good, but doesn't apply to us." The truth is that people who need help the most are the ones left in fighting but left with nothing.

I know there isn't an easy solution, it's a complex issue, but it seems our children and also ourselves are left excluded in so many situations.

A local café recently had a renovation and announced a re-opening party. "Oh wow that's nice, we could all go as a family."

I message them on social media to check there is wheelchair access. Was there? Nope. Everyone is welcome, except you sorry, the rules don't apply to you, you are an inconvenience and an afterthought and we don't care you can't come.

That's not how their reply was worded, but it's how it feels. Sure, we could carry her wheelchair up the steps to get in, but we shouldn't have to and it isn't fair.

It makes you not want to try.

The most frustrating rule in our world that doesn't apply, and I'll mention it every time... toileting facilities!!

There are places that are legally required to provide toilets. But the law does not dictate to provide toilets for EVERYONE but only for people who are able bodied.

If lucky enough to have a disabled toilet - you are expected to transfer yourself with only the aid of a grab rail. Because the rules don't apply here.

If you need a hoist and lots of space for your wheelchair and equipment, this is apparently not the place for you.

Thankfully there are lots of people campaigning for better provisions for people who need changing places and I hope that one day it becomes a law that they are provided in certain places.

One rule that does apply but not work in our favour is that specialist equipment seems to have to cost a lot more than what seems reasonable.

What may appear to be a 50p dog toy in a pet shop, is at a disability convention priced at £12 and labelled "cognitive development tactile rubber ball."

The level of exploitation is staggering.

Why develop things to help people and then force them to pay so much more when so many aren't in a position to afford such things due to not being able to work?!

I am thankful that there are companies like Firefly that actually sell things affordably. It would be easy for them to see what they provide and charge several times more for it knowing OT's will somehow find the funds.

Got a headache? Take a paracetamol the world would say. Swollen ankle? Ibuprofen will sort out that swelling my friend.

Got epilepsy? Well, let's try x amount of medications with varying horrific side effects only to be met with a whole new set of challenges. Dystonia? Let's try various medications again, with horrendous side effects and we can tweak doses and hope that the benefits outweigh the lousy side effects.

The rules don't apply with our kids and medicine. Their issues are so unique and complex that there is no obvious or simple fix. Nothing with them seems to be an exact science - this isn't the fault of anyone, it just is how it is.

These are the rules and we have to accept them.

"This medicine might make her sleepy" I've been told.. secretly hoping that we will get a better nights sleep.

Only to then be met with entire nights of insomnia from my child! You can read the common side effects and assume that the opposite will happen, because the rules don't apply here.

Ah, caught a common cold? Keep hydrated, rest and you'll be better soon. You guessed it - the rules don't apply here.

Cue aspiration, nebulisers, suction, ambulances, trips to resus, IVs, antibiotics, chest physio. Things here are not done in half measures.

The advice on the NHS site doesn't apply, you'll watch your child like a hawk, noting every seizure, every spike in temps, every cough in the night will send you running like an athlete and grabbing a suction catheter quicker than you can say bradycardickangaroopyjamas.

Family day out? Maybe pack a change of clothes for the child, sun cream and some snacks and drink. Oh no, not here. A trip to a garden centre will look like a weekend away for a family of 5.

People will joke as you become trapped in doorways by your copious amounts of baggage. "Do you really need all of those bags?" Yes, yes we do. We have more in the car too don't you know.

Doesn't everyone take a suction machine, nebuliser, feeding pump, changing bag and a meds bag out with them to the shops?

These are just a few examples of rules not applying. The one that makes me feel guilty is that 100% of the time my child gets her iPad when she wants, she gets to leave the room or table if she wants, she gets anything she wants and needs.

She's so loud and quick to become distressed, it's hard to read her wants and needs, she can't express them like other children her age.

So we go with the flow and have our own set of rules. She is a child like any other, and I know children thrive on routine.

But routine is something very hard to adhere to in our world. We always expect the unexpected and we deal with the cards we are dealt and they are dealt.

In some ways it makes us a better person. We are more patient, more prepared, more understanding. But it comes at a cost. It's exhausting, frustrating, and unrelenting.

There are rules I wish didn't apply. So many in fact.

It makes you see that whilst the world is starting to become more aware, we still have so much work to do to gain the understanding of others, and to get the adaptations and services we need.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ceri-Ann Brown

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!)

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