No, It Isn’t September Yet, Stop Whining!

I posted a tweet yesterday which said: ‘Another post about how hard the summer holidays are by a parent of TD kids. Keep em coming-it’s doing wonders for my self-esteem #SENDlife’ (TD = typically developing). Every time a read a post of this nature I nearly bust a rib laughing, and not in a nice way. I’m not talking about posts written by parents living in difficult circumstances, who maybe unable to afford enough food in the holidays, or anything like that. Mostly the writers appear to enjoy what seem to be relatively comfortable circumstances. Is parenting typically developing children really that hard? I never found it hard when my eldest two were young. I am aware that even voicing this opinion may cause you to judge me for being judgemental, I may be accused of being a competitive parent, or even a liar. Then Facebook reminded me of this post I wrote a year ago – I have to say that even when my day proceeds like the one described below, I really don’t find parenting all that difficult: tiring, yes, but not as miserable and depressing as so many parent bloggers make it out to be:
I’ve just read a piece somewhere about how very difficult it is when your toddler has a tantrum in a posh shop because he/she wants to carry the basket. And even though it’s too heavy, wants to carry it all by themselves.

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.

On days when the Gods are smiling 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. 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 ‘God, I wouldn’t want to walk in her shoes’, but I’m laughing, because I know I could fly in yours.
Perhaps the prevalence of so many disaffected mothers (and fathers) is a product of the pressure that society still places on married couples to produce children regardless of their own inclinations, and the way in which those who choose not to are demonised?

A Vial Image

Images grab attention. They allow readers to summarily apprehend and review complex descriptions and concepts

On 30th July BBC news ran an article headlined ‘Public Health Wales ‘scoping’ Down’s syndrome Blood Test.’ From the point of view of the Down’s Syndrome Community the article struck a positive note. The article reported that Public Health Wales had cautioned that any plans to introduce the new test for Down’s syndrome within NHS maternity units in Wales must be carefully considered. It also quoted Julian Hallett from the Down’s Syndrome Association in Wales as saying ‘there should be no rush to implement NIPT in Wales until NHS staff were ready to support women and explain the new choices for screening’. Also reported were his comments that midwives and screening coordinators need to be trained (in the system) and have up-to-date, balanced and accurate information on the conditions being tested for: the need for health professionals to ensure that they balance the information they give parents by including positive information, and explaining the increased opportunities that now exist for both children and adults with Down’s Syndrome: and the need for rapid access to appropriate counselling, so that parents can make an informed decision.

 

This is exactly what so many in the Down’s syndrome community have been calling for: careful consideration instead of blanket acceptance and assumption; balanced and up-to-date information that will allow prospective parents to make a truly informed decision. At last, perhaps, our voices are being listened to.

 

But the BBC chose to run the article accompanied by the following image:


 

Five vials of blood, side by side. Appropriate enough, you might think, for an article about a blood test. So what’s the problem? Look closely at the picture, at the tubes. What do you notice about them?

 

I appreciate that whoever was responsible for choosing the image did so without malice, or even much thought. In all likelihood they just grabbed a stock image. Why does it matter?

 

Images grab attention. Images allow readers to summarily apprehend and review complex descriptions and concepts. This is especially true in the image-heavy, quick-click world of social media, where we do not expect to have to pore over the details of a lengthy text; instead we want to consume information in the form of easily digested pictures and bite-sized captions.

 

Visual images make a point more quickly and forcefully than words. But it is easy to be misled by them, because they show only a snapshot of the reality that the artist or image-maker has chosen to portray. This is a particular problem for those grabbing stock images generated by someone else: the creator’s original message or intention can be overlooked, and a superficially appropriate-seeming image can end up giving out a quite different impression to that contained within the text.

 

Those viewers who do take the trouble to read all of the accompanying text will not remember all the words and are, therefore, vulnerable to have their understanding of the text biased by one, simple, stark, arresting image that their mind will retain for much longer.

 

Now, look again at the image above. Read it. Consider every detail and the impression it creates in your mind. What does this picture say to you?

 

Five vials of blood in a row, three with different labels. The vials are not equal in size; one, labelled ‘Down’s Syndrome’ looms large in the foreground. That’s right: it LOOMS. Consider the sinister connotations of this word.

 

What does this suggest? That Down’s Syndrome is a disease? That it is worse than cancer? That it is a deadly scourge to be eradicated, as as we have eradicated smallpox?

 

Down’s Syndrome is NOT a disease. It is a genetic anomaly, a naturally-occurring chromosomal arrangement.

It is in no way comparable to cancer.

It cannot be eradicated, because we cannot prevent babies with Down’s Syndrome from being conceived, and we should not seek to prevent those parents who are so inclined from welcoming a child with Down’s Syndrome into their families.

 

How bitterly ironic that an article at long last calling for balanced, accurate, and up-to-date information about Down’s Syndrome to be given to parents has run with an image that is blatantly unbalanced and inaccurate.