I have noticed a trend of late.

There are many, what I call, “Mainstream”, mummy bloggers out there.

The ones who write, most bravely and openly, about how hard parenthood is.

How much gin/wine/Prosecco/vodka/lighter fluid it is necessary for them to swill, in order to cope for even part of the day with the tribe of little monsters/sh*ts/demons that fate has seen fit to saddle them with (funny how few of them seem to have ‘children’). 

Well now, I thought, being the compassionate soul that I am, I have the perfect product to lend help and succour to these poor, benighted, suffering women in their hour of need:

SPECIAL NEEDS MUMMY SHOES!

Walking just one mile a day in Special Needs Mummy Shoes brings:

The ability to endure a full day* of parenting without the need to resort to alcohol OR coffee, tea, any kind of food, toilet breaks or sleep! (*A day may last anywhere from 18 to 72 hours)

Amazing clarity of vision – allowing the wearer to see the difference between a toddler tantrum and a full-on sensory meltdown.

A new, improved sense of perspective – bestowing upon the wearer the Zen-like realisation that the prospect of not getting the school place you want is not a life-or-death situation.

The ability to become a self-taught medical expert and education specialist, whilst also managing medication/equipment, therapies, outpatient appointments, hospital stays, review meetings, work, study, marriage, other children, household management and sleep deprivation.

Vastly improved olfactory function – put them on as soon as you wake up and you will not only be able to smell the coffee, but also the bed of roses you’re lying on.

Yes! Just ONE measly mile a day in SPECIAL NEEDS MUMMY SHOES guarantees instant relief from whining and self-pity.

SPECIAL NEEDS MUMMY SHOES – brought to you by ExtremeParenting.me

I know, I know, I shouldn’t judge: everyone is fighting a battle others know nothing about. I shouldn’t have to point out that this post is flippant and not intended to be taken seriously, but I will, because there’s always one, isn’t there, who misunderstands the concept of tongue-in-cheek, and gets their head stuck right up their fundament (not that cheek, dear!).

It’s been a long day, but, I am pleased to report, I have managed to write this post using very few swear words, and whilst drinking nothing stronger than a cup of lemon tea.

I’ll never make a, “Mainstream”, mummy blogger, will I?  

Whilst composing a post about, ‘Scruffy Hospitality’, my mind wandered into a consideration of my relationship with my mother and the differences in attitude between us.

One of the most cutting things she has ever said to me was: ‘How will you cope with a disabled child? You can’t cope with the two you’ve got’.

I was shocked rigid by the blatant injustice of it, and didn’t answer back.

Or perhaps I was silenced by the little voice, nagging away in the back of my head, saying: ‘She’s got a point, you know.’ I’m not one of life’s copers, not like she is.

My mother worked full-time and kept the house immaculately, aseptically, clean, tidy, and carefully arranged.

She was ruthlessly organised and efficient, never putting off till tomorrow what she could do today.

She cleaned the windows religiously on a weekly basis with hot soapy water, rinsed them with vinegar and buffed them up with scrunched newspaper.

She used three separate cloths for dusting, one to remove the dust, one to apply polish and the third to rub it to a shine.

Visitors were swept straight up the garden path and into the pages of Woman and Home.  

In my house there is a pop-up bin in the kitchen where I put any clean laundry that I have not yet got round to ironing; things can always be pulled out and rubbed over if they are needed.

I clean my windows with a green spray from the supermarket and a bit of kitchen roll; I use the hoover to remove dust from all surfaces, high or low, soft or hard.

All this despite the fact that I have not gone out to paid employment since my eldest child was born. I am a shameless slob.

Perhaps she forgets that I have three children; that I have raised a son who is on the Autism Spectrum with no outside intervention or help.

There simply wasn’t any available locally at the time, because our son does not have a learning disability.

She probably doesn’t realise just how exhausting it is to start each day with a battle of wills with my youngest, who has Down’s Syndrome; nor how important it is to put that exhaustion, and the causes of it aside, so that you can hold your patience and remember to have compassion for his difficulties.

She probably doesn’t know that I haven’t found any of this particularly hard.

I think she also overlooks the fact that she had just one, quiet, solemn child, live-in childcare courtesy of my (now late, then retired) grandmother … and a prescription for Valium throughout most of my childhood.

I used to think I must have been a really horrible child to drive my mother to the point where she needed tranquillizers.

But now, pondering her attitude to housekeeping and entertaining, I am beginning to wonder if I was the cause of it.

Was her anxiety actually driven by her desperate need to, ‘keep up with the Jones’s or, at least, her perception of the Jones’s, and what they had, thought and expected of others?

Knowing a little about her background now, I understand where this painful internal pressure to conform, in order to be approved of, came from.

She became what she needed to be.

My circumstances mean that I, and my family, can never conform.

I have had to learn to live with this.

In order to do so I have had to let go of any need for the approval of others, and therefore, any need to conform to their expectations.

My eldest son is now an independent young man, living a perfectly ‘normal’ life at university.

Despite being sandwiched in between two brothers with additional needs, my daughter has escaped the mould of the typical young carer; I give her a decent share of my attention, as well as opportunities for personal enrichment, and time to spend with her friends.

Freddie is, by and large, a happy, confident child, who perceives that he is loved.

Anyone nosey enough to look in through my quickly-wiped windows can see this.

They can’t see the undone ironing.

What is coping but doing what you need to do to make it through each day in one piece.

In my head I know where this parent is coming from: I’d be feeling the same way too if I cared what other people think.

But I don’t care what others think of me, because I’ve had to learn not to.

Viewed through the prism of ‘special needs’ parenting, this person’s nightmare looks like my dream shopping trip – only one ‘terrible twos’ tizzy, with an easily identifiable cause.

Although I understood the point the writer was making, I didn’t identify with him at all.

In fact, I found his concerns somewhat laughable because I had just returned from a two-hour expedition to buy milk from a shop ten minutes’ walk away from my house.

The usual laws of time and space don’t apply to special needs families. It IS possible for a ten minute trip to take two hours.

It might start with a flat refusal to come downstairs to get ready to go out.

This refusal may come completely out of the blue, or it may follow a tantrum about the wrong kind of toast (or, as last week, a tantrum because it wasn’t August yet, and according to mummy, it takes more than just turning over the page on the calendar to make it stop being July).

To show him I mean business I can take the shoes and backpack (with attached wrist-link) upstairs and attempt to put them on, but this will result in ten minutes of furious kicking while I try to wrangle the boots on without the insoles slipping out of position, and at the same time avoid getting my front teeth removed by a flying Piedro.

Hopefully I’ll get them on the correct foot at the first attempt, even though they are so battered and out-of-shape that I can barely tell which is meant to be which (but, of course, I’m still waiting for the new ones to be delivered).

What happens next depends on which one of us first gets bored of waiting out his refusal to stand up.

If I’m very lucky, then, once out of the front door I might find that he resigns himself to going to the shop, and walks nicely beside me holding my hand, chatting about the things he sees and hears on the way.

His first attempt to run off will be met with application of the wrist link, which may result in him realising that trying to run off was a bad move.

If this is the case then, as we approach the busy road, I may feel a little hand slip into mine.

Sometimes, we might actually get round the shop without a tizzy of any kind, especially if he is fully occupied pulling the basket, which handily has little wheels on it so it doesn’t get too heavy.

He’ll even gleefully unload the stuff onto the belt at the checkout, and pack it all into the bag at the end, carefully dropping a four-pint bottle of milk onto the bread rolls to cushion its fall (luckily, hereabouts, we eat North Staffordshire Oatcakes, which are already flat and pretty much indestructible).

The homeward journey could potentially proceed via three or four ‘flop and drop’ attacks. 

These are caused, in the first instance, by me dragging him away from the most fantastic stick that he’s just spotted on the ground, because we’re in the middle of a pedestrian crossing, and the lights are about to change for the traffic to start moving again. This one could last as long as twenty minutes.

The next might well occur because I tell him off for viciously kicking the shopping bag as he gets up from the first (only ten minutes, this one).

The third will probably be precipitated by my refusal to let him pick up a dirty wipe from the grass outside the flats – some trollop has obviously wiped the baby’s bum on it and just thrown it out the window (I’m getting decidedly frustrated with the whole world, and everyone in it, EXCEPT for my child).

The person who offers a jocular, ‘helpful’, comment on my parenting style at the fourth, ‘flop and drop’.

(which occurs because my little one is now tired and fed up) will likely feel the sharp side of my tongue and will go away thinking I’m an asshole. That’s ok, because I already think he’s an asshole, so we’re quits.

The fifth (wait, there’s a fifth? No wonder it took two hours) will inevitably happen at the entrance to a car park, or in the middle of the road, or some other place so obviously inconvenient or dangerous that it is difficult not to imagine that it has been carefully chosen as part of some dastardly plan to be the final straw that breaks the camel’s back (and boy, have I got the hump by now).

I have no choice but to half-drag, half-carry my offspring out of harm’s way to a more suitable location for such an activity (or inactivity).

Sanctions and punishments have no effect whatsoever in this situation.

You can only try to manage the behaviour and ride it out. Much harder to ride out is other people’s reactions.

I was going to say that it helps if you have no shame, but no one should be ashamed in this situation, because they are dealing with something most people have no understanding of.

So, Mr Woe-is-me-my-kid-threw-a-wobbly-in-Waitrose, I’ll see your tiny toddler tantrum and raise you ten.

I’m not asking for your pity. You may be thinking, ‘I wouldn’t want to walk in her shoes’, but I’m laughing, because I know I could fly in yours.    

Our parents are elderly, our friends have busy lives and elderly parents of their own to look after, so babysitters are thin on the ground.

When our older children were little we would gather with friends at each other’s houses on weekend afternoons, so that we could all take our children along with us. That doesn’t happen so often now that our children are growing up.

Although one or two of our friends still have young children, and still entertain in this way, it is more difficult for us to participate.

Freddie has no sense of danger, is inquisitive, mischievous, and an enthusiastic absconder.

We have to keep all outside doors, and all windows locked, and the gates bolted. Our friends houses and gardens do not have to be as secure as ours, and it seems rude and presumptuous to start imposing our needs on them when we go to their home – could you lock this and close that, and could you put those away?

Although we do enjoy their hospitality, we can never fully relax and it’s exhausting.

The solution was obvious.

For years I have wished we could entertain in our own home, where everything is already arranged to suit our needs. But my house is not fit for company, and I am not a good hostess.

My mother was ahead of her time – her house was, ‘Pinterest-perfect’, forty years too soon.

I was an only child, my parents both had well-paid jobs and free live-in childcare courtesy of my grandmother.

When my mum wasn’t working she was cleaning, decorating, or shopping for the perfect accessories.

Her taste was expensive, solid, restrained, and obsessively co-ordinated.

Entertaining was a ceremony.  

A white lace cloth was laid, the, ‘best’, Doulton dinner service was brought out and filled with food from Marks and Spencer, best clothes were put on at the last minute and kept clean.

I gave up work when I had children, and as both the youngest and eldest have additional needs, I have not returned.

In my house there are three children, two adults and one income.

The furniture is mismatched, accessories are cheap and cheerful.

On the bookcase, alongside one or two, ‘coffee table’, books, are piles of paperbacks that have been dropped in the bath, and Freddie’s collection of plastic dinosaurs and diggers.  

After twenty years of marriage the matching wedding-present crockery sets have long since degenerated into a randomly assorted selection of different designs and shapes.

We’ve never had a, ‘Dinner service.’

Then I read an article about, ‘Scruffy Hospitality’, that is, opening up your home, and yourselves, honestly to your friends, inviting them to share what you have and accept you as you are, without worrying whether your home is, ‘picture-perfect.’

I realised that, even before Freddie came along, I could not have told you whether or not my friends had dusted before hosting us, whether their carpets were new or threadbare, or whether their crockery matched, or contained food that was home-made or store-bought.

What I could tell you is that the food was tasty, and the company and conversation were excellent.

So I decided to take the plunge, and invited friends over for Sunday lunch.

I did worry what they’d think about this informal approach to entertaining, but I shouldn’t have.

One friend turned up having done some shopping on the way, and asked if he could put the perishables in our fridge.

My mother-in-law turned up unexpectedly and we had to grab an old chair out of the garage, plonk a cushion on it, and squash her in at a corner of the table.

I didn’t plate up, everyone just helped themselves from a variety of containers placed in the middle of the table, and there was little left at the end.

Our rag-tag crockery attracted no comment, but we were complimented on the roast potatoes.

Freddie played on his faded plastic slide while we enjoyed coffee and cakes in the garden.

When he’d had enough he went inside and put on a DVD, we could see him through the window and knew he was OK.

I thought, ‘If we invite them back and they don’t come, then we’ll know it didn’t work’.

But arrangements were made even before our guests, our friends, left.

We felt so much better for having had the company.

It turns out scruffy hospitality is not a shabby idea.

Throughout her life my mother has been a Carer.

She first took on this role in her early teens when she cared for her stepfather who was terminally ill, while her mother went out to work to put food on the table (the NHS and the welfare state had barely got started at the time).

After raising me, she cared for her own mother, then her mother-in-law, and then her father-in-law in succession.

Now she cares for my stepfather who had a stroke some three years ago.

When I fell pregnant with my third child, and discovered the chances that the baby would have Down ’s syndrome were one-in-twelve, she was devastated.

The one thing she didn’t want for me was the life of a Carer.

After I refused an amino she didn’t speak to me for six weeks, so adamant was she that my life would not be worth living if I had a child with Down’s.

She thought it the height of self-destructive folly to continue blindly, in the hope that it was just a false alarm and everything would turn out all right.

Everything is all right.

Yes, it’s true that my son Freddie does have Down’s Syndrome, but – and this is a secret, so don’t tell anyone else on here or they’ll think I’m a big fraud when I write about disability issues – the truth is; I’m not a Carer.

That may not be true for everyone who has a child with DS, but it is true for me, and I’d bet you a pound to a penny that it’s true for some other families as well.

You see, Freddie is healthy and able-bodied, he just has a developmental delay and some learning and communication difficulties.

‘Extreme Parenting’, more accurately describes what I have to do for Freddie.

Each stage of development has come later and lasted longer, but he consistently progresses in the right direction.

I had a ‘baby’ for three years, and a ‘toddler’ for four.

Yes, we changed nappies for six years, but many children have the odd accident up to this age.

Now, at seven and a half, Freddie is reliably clean and dry in the day; at this stage we just have to remind him to go to the toilet every so often (there are so many, much more interesting things to do), and administer a few spoonfuls of medicine to keep on top of his tendency to constipation.

He wears a pull-up at night, because (lucky us) he sleeps right through, but some mornings he is dry when he wakes, so it looks likely we’ll get there in the end. Around one-in-four typical children wet the bed up to the age of about ten, anyway.

Yes, I spent a sleepless night on sick-bed duty last Saturday, administering medication and making warm drinks..

not for Freddie – who snored softly under his quilt the whole time – but for his dad, who had a nasty flare-up in his asthma.

I stayed alert the rest of the night, ears pricked for the sound of a deterioration in his breathing – severe asthma can rob you of the power of speech just when you most need to ask for help.

Many times when my daughter was small I lay beside her in bed, listening for the same, waking her every couple of hours, on doctor’s orders, to give her a dose of her inhaler.

I would much rather wipe a loved one’s bum from time to time than listen to them wheezing and gasping with such difficulty that I’m afraid they might stop breathing in front of me.

Yes, I have to deal with some challenging behaviour.

Partly this is due to developmental delay – patience helps a great deal here, remembering that Freddie is in some ways cognitively and emotionally younger than his chronological age.

Partly it’s due to frustration caused by learning, and especially communication, difficulties, in which case strategies like the use of Makaton have helped.

Partly, I have to say, it’s also due to personality.

My mother found me a very challenging child; luckily there’s no prenatal test for Outright-Awkward-Sod Syndrome, otherwise I might not be here.

Freddie has no major physical or mobility problems, so we don’t use any special equipment.

The only medication he is on is a mild laxative, which he slurps off a spoon.

So, in addition to only having to do a bit of, ‘Extreme Parenting’, I also still get to experience the milestones and the fun things that all mums and dads look forward to: hearing him read aloud, seeing him learn to write, to swim, and to ride a bike.

We go out to restaurants, the theatre, the zoo, and to museums.

We go on holiday. He kicks his football over the fence into the neighbour’s garden.

This is the truth of Down’s Syndrome for me.

You see, my mother’s fears were groundless.

You can’t blame her, such were the negative messages she’d absorbed about the condition, messages she tried to pass on to me.

How many others, hearing the, ‘received wisdom’, about Down’s, have been made to feel unequal to raising such a child, even though they wanted children?

We were shopping in town one day, when my daughter was about seven.

We were walking through the lovely little public garden on the edge of the town centre when she asked if we could have a picnic there.

When I pointed out that we didn’t have any food with us, she solemnly opened her little plastic handbag and produced two biscuits in a little case that she had squirreled away just before we left the house.

We shared them sitting on a bench, looking at the flowers and chatting. She was content with our picnic and so was I.

I don’t think I’ve ever been on a traditional picnic, the sort that involves a basket, a tartan rug, and portable plates and cutlery (by its nature so very middle-class).

Ours are always much more downmarket affairs, with sandwich bags, juice in little cartons, and a bit of mismatched ‘tupperware’ if the food includes smushables.

We still love having picnics though, which is just as well, because they were invented for families like ours.

On a tight budget? (We are). Pack a picnic It’s much cheaper than eating out in restaurants and cafes. And, since you only pack what you like, in quantities you will eat, there’s little, if any, waste.

Got food allergies, or very fussy children? (We have). Pack a picnic. You know exactly what is in the food, and you can be sure that, whatever your destination, there will be a suitable meal or snacks readily available.

Got sensory issues? (We have). Pack a picnic. Busy, noisy, crowded eateries can be a nightmare. But with a picnic, you can choose your eating place to suit your needs.

Use a wheelchair, an extra large buggy, or other mobility aids/special equipment? (We have had) Pack a picnic. OK – public places should make provision to accommodate us as easily as the next person, but the sad fact is that many either think they have, but are not really fully aware of the kind of provision that needs to be made, or simply don’t have the ability to make the necessary changes. Either way, it can be difficult to manoeuvre or deploy such equipment in a busy or cramped establishment. Once again, with a picnic you can choose your spot to suit your needs. Having said that, toilet and changing facilities remain a problem everywhere!

The vagaries of the British weather are a consideration, not to mention a considerable inconvenience at times, but I am becoming aware of an increasing tendency for visitor attractions such as museums to offer indoor spaces where patrons are welcome to consume their own food – the Museum of Science and Industry in Manchester is the one that springs first to my mind.

Sometimes, if the little one is fractious and uncooperative at mealtime, or on rainy days in the long summer break, we have an indoor picnic.

I spread a blanket out in the middle of the living room floor and lay the food on that. It usually works a treat.

This year I am thinking of adding a few pot plants to the mix, to enhance the ‘picnicky’ atmosphere.

If it’s raining the windows will be closed – just think … all the fun of outdoor eating without any pesky wasps.

We find a tablet P.C. an invaluable part of our holiday kit.

We love them because you can download so many different things onto one, easily portable, device: games, favourite T.V. programmes and films, books, and educational apps that support numeracy, literacy, and communication skills.

I don’t feel bad about using screen time to keep Freddie busy at home, either.

I know, I know – there are people who believe that young children should not have any screen time at all. While I wouldn’t want Freddie to be glued to a computer, a tablet, the television, or any other electronic device all day, every day, I don’t think that, ‘rationed’, use of them will do him any harm. In some ways, I think it can even be beneficial, used in moderation. 

And moderation is always possible. I am not afraid to use the word ‘no’. I am the adult, I am the one in charge; I decide when he has the tablet or T.V. and for how long. I set a timer if necessary, and when the time is up, the device goes off, no matter how much he protests.

Very often, when the alarm rings, he switches it off himself after a bit of gentle reminding.

I have the same attitude to biscuits.

We have found some novel ways to exploit screens to support his learning.

Freddie loves animals. We have taken to recording family-friendly wildlife programmes (pre-watershed), which he really enjoys watching.

He has a tendency to repeat words and phrases that he hears on the television.

When he does this, we pick up on the words and talk about them, and try to add some context, so that what starts as merely echoing leads, in time (hopefully), to understanding.

Another thing we have noticed, and this is one in the eye for those who say that all screen time is detrimental to children, is that Freddie responds much better to a book once he has seen an audio-visual version of it, such as the BBC adaptations of popular Julia Donaldson stories.

Viewing these on screen has encouraged him to engage more actively with the printed books. He now reads them more or less independently.

Freddie still gains just as much pleasure from traditional toys and activities as I did, growing up in the days before personal computers and mobile phones were available (‘Pong’, was as near as I got to a video game).

When we fly I also take along non-screen-based distractions, such as paper and coloured pencils.

One thing that went down particularly well was a new book, presented as a ‘surprise’ once we were seated on the plane.

I can see this becoming a tradition, and who knows, perhaps giving books as exciting presents will help keep alive, by association, his love for real, ‘paper’, books that can be handled, smelled and cherished.

One of the most prevalent and problematic ways of perceiving, or looking at, disability is this:

Society tends to view disability as a problem with the individual – that an individual’s medical condition is the root cause of their exclusion from society.

This is known as the, ‘medical model’, of disability. It is this viewpoint, or construct, that is responsible for evolving a great deal of the terminology surrounding disability that is in regular, mainstream use.

It is language that, by its very nature, denies that many of the most disabling aspects of any given condition are caused by societal barriers, that is, society’s failure to recognise and accommodate the differing needs of people with impairments.

It is terminology that is patriarchal and negatively nuanced (e.g. ‘invalid’), subtly suggesting that disabled people are non-functioning members of society who need looking after and are not capable of independence.

Much of this language is based on false premises that have since been disproved; but it is perpetuated by the medical and social care professions, and often the mainstream media.

It is generally considered offensive by the disability civil rights movement.

The language that people use both reflects and influences how they think, and as a consequence, how they react to, and deal with, situations and other individuals.

If we are conditioned to believe that the problem lies with the individual, then we will take a different approach than we would if conditioned to regard the problem as being with the attitudes, systems and practises of society.

Commenting on this picture, one person said that they couldn’t see why special needs parents were any more ‘super’ than any other parent: we’re all just trying to do our best for our children.

I wouldn’t dispute the fact that we all want to do the best we can for our kids, but it got me thinking about the wide gulf of difference between what the parents of, ‘typical’, children are required to do to ensure the best care for their children, and what we, ‘special needs’, parents have to do.

There is a vast difference between waking up and putting your newborn baby to your breast and sitting up nights to express milk for a child not strong enough to breastfeed.

Then, after that, spending a further one and a half hours trying to feed that milk to a little one who struggles not to get exhausted before they’ve taken the minimum amount necessary for their welfare.

All the while, knowing that in another hour you’ll have to start all over again and, in the meantime your other children need to be given breakfast and taken to school.

There’s a big difference, too, between preparing a home-cooked meal for your child and administering nutrition via an NG tube or peg, or liquidise every morsel they ingest.

Being woken periodically by a child who doesn’t sleep well is a world away from routinely being up all through the hours of darkness because your child can’t tell night from day, or whose brain just doesn’t ever switch off, or has a condition which means that someone has to stay awake with them all night, for safety.

How many people, who are not members of the medical professions, have to routinely manage medical equipment and treatments, day-in-day-out, like many special needs parents have to?

How many of them have to endure the hostile stares and judgemental comments of others when their child goes into meltdown in a public place, whilst trying to manage the situation calmly?

Do they have to fit in numerous medical appointments and therapy sessions on a weekly basis, or juggle the needs of a child frequently in hospital with the needs of their others at home?

All whilst trying to keep their worries and fears in perspective and under their hats?

Whilst holding down a job, or studying?

Whilst trying to maintain their relationship with a partner, who may be their rock, but may bring additional problems which also need managing?

Would they even dream of attempting to do all that in make-up and high heels, just because that’s how they roll and, at the end of the day, they still need to be themselves?

My fellow special needs parents and I – yes, we are super-parents – not because someone waved a magic wand and made it so, or gave us a mask and a cape and a pat on the back, but because we had no choice but to find it within ourselves to shoulder all these extras and carry on as normal.