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.


Homemade (With Love, Felt Pens, and Desperation).

Here’s another of our ‘Heath Robinson’ handmade (in other words, crappy) resources. I wanted to demonstrate to Freddie, in visual form, exactly how long the school summer holidays are, and to reinforce the idea that he will be going back to school in September. I wish I had thought of this at the beginning of the year, because the second week of July is a little late to go looking for an academic year planner, at least in my local shops. I know there are lots of great printable resources available online, but our printer no longer actually prints. The light still comes on when you plug it in, though, so as far as Daddy is concerned it isn’t broken. Anyway, when you factor in the cost of ink cartridges, and paper, and electricity, it’s much more cost-effective to send your spouse down to the shops on foot to buy some pens, so she can draw things by hand on the free cardboard that you get with every packet of cereal. Another advantage of wives is that you can run them on cheap baked beans from Aldi. Indeed, they are the ultimate sustainable solution: organic, low emissions and fully biodegradable, a bit like cart horses used to be.

I didn’t have long to knock this little gem together, and wasn’t sure how best to approach the task. I colour-coded the days: blue for school days, red for weekends, and yellow for school holidays. By the time I was finished I was beginning to think that I’d made it over complicated, but there was no time left to try again. I attempted to explain it to Freddie when he came in from school, but he immediately demolished the moveable green dot I’d made to mark which day we’re on, and cast the chart into the (metaphorical) weeds.

Later on I found the dot stuck to my shoe, so I stuck it back on the chart and Blu-tacked the whole thing to Freddie’s wardrobe door thinking ‘We’ll see how we go’.

Fast forward to Saturday morning and the first thing Freddie does when he gets out of bed is to move the green dot from the Friday to the (correct) Saturday, then parks himself in front of the chart and studies it for a good few minutes. Perhaps he will ‘get it’ after all. Always presume competence. Actually, while it’s perfectly legit to presume competence in one’s children, you might want to exercise a little more caution when it comes to professionals 😉.

End Of Year Thoughts

Another school year has come to an end. Over the past couple of weeks my newsfeed has been full of posts about Sports Days, leavers’ assemblies and prom nights, and end-of-year reports and concerts. Bittersweet moments have been shared, of children ‘growing up too quickly’ as they pass through the milestone moments of their education, moving onwards from one stage to the next, inexorably towards adulthood. A good many of these posts have shown children with additional needs and disabilities fully included and participating in mainstream school life. Inclusion is the ideal – where the school is willing and able to fully meet a child’s needs, and where the child is able, with appropriate support, to cope in a mainstream school environment, it benefits the whole school community, and society, as it teaches tolerance, and ‘normalises’ disability by allowing non-disabled and disabled children to interact as peers, on a day-to-day basis. However, for some children it is not the best option.

There are many children with additional needs who struggle in the mainstream school environment. There are many mainstream schools who struggle to meet the needs of SEND pupils. Often the situation is an unhappy mix of the two. For the parents of children in this unenviable position, the suggestion that their child’s needs would be better met in a Special, or SEND, school may come as a crushing blow. And no wonder – inclusion in mainstream is held up as the gold standard; having your child end up in a SEND school is seen as Failure.

Parents often express feelings of grief, guilt, despair, or anger when it becomes apparent that their childs needs can really only be met at a Special school, and some refuse point-blank to even consider it, preferring instead the idea of fighting to keep their child in a school that is manifestly unsuitable. I believe the reason for this is because the common perception is that they will be somehow selling their child short, or letting them down, if they choose Special school. No parent wants to do that.

This is a very sad situation for everyone involved. 

I can tell you from personal experience that SEND school is not the bottom-of-the-barrel option. It is not about failure, or giving up on children, or just ‘babysitting’ them for the day, and it is not about segregating disabled children away from Mainstream. Special Education, properly done, is about appropriate and accessible education. 

It is about acknowledging and accepting difference, and the fact that different people need different things. Inclsuion in Mainstream is all very well when it works: when the school can meet the child’s needs, and the child can cope in a mainstream environment, but this does not always happen. Of course there are good and not-so-good schools in both sectors, but Mainstream and SEND are, in a sense, two different animals, and one is not less than the other.

My own son goes to a Special School. Freddie is in a class of ten pupils and three staff (plus one extra to assist a visually-impaired pupil). He gets a much bigger share of attention than he would in a class of thirty. Yes, in mainstream he would have one-to-one, but there is no guarantee that his one-to-one would have any special training or knowledge. With a pupil/staff ratio of roughly 3:1 he does at least have to learn to stand on his own two feet a bit, but in a very safe environment.

All the staff in Freddie’s school are specialists in SEND and are aware that our children may need to learn and be taught in different ways. They seem to be able to be much more flexible and creative in the way they work than mainstream would allow, it means they can be very responsive to individual need and circumstance 

I don’t have to fight for anything, and I don’t have to be constantly going into school to sort out problems. The expertise we need is all in place.

All the staff have a great deal of experience in dealing with challenging behaviours in a calm and constructive manner. All the staff know how to discipline children with additional needs effectively, and they have certain expectations of the children, and know how to communicate them in a way the children can understand.

Acheivement is measured on an individual level at Freddie’s school; each child is encouraged to improve upon their personal best, and when they do so this is celebrated, no matter what others in the class have done. This is only fair because, as the school recognises, their children come with widely differing needs and abilities.

Freddie certainly isn’t just being ‘babysat’ for the day. And he doesn’t spend the whole day just singing silly songs and doing bits of craft. Yes, art and craft are on the curriculum, but so is literacy and numeracy, or English and Maths as he calls them now that he is in Year 3. They do Phonics. They do topic work on Science subjects, History and Geography. They do use songs as a learning tool sometimes, because it helps the children to remember things. I still sing a little rhyme I learned in school when I want to remember which months only have 30 days in them. 

They do cover life skills and skills for independence, which has taken some of the pressure off me at home. In fact I’ve learned a lot of helpful tips from the teachers which I’ve been able to use at home. Consistency of approach between home and school has improved Freddie’s behaviour. 

I’m certain he’s getting far more out of the curriculum at Special school, because it’s differentiated to meet his needs, than he would at Mainstream school. To insist that he be taught exactly the same as typically developing pupils would be to deny his difficulties, and, therefore, limit his opportunity for learning. Many of the things that pupils do in Mainstream can be adapted for Special School. In September Freddie will be doing Forest School. In another year or two he will get to go on a residential, if I can bear to let him!

So, if you’re one of those parents who’s feeling gutted because Mainstream school is not working out for your child, please believe me when I say this isn’t the end of your child’s education, and you’re certainly not failing them, letting them down, or selling them short by sending them to a (good) Special School. You might just be unlocking a door for them.

What A Star.

Freddie likes to follow a predictable routine. Familiarity is comforting to many of us, and in Freddie’s case, I think it also helps him to make sense of things – if THIS is happening now, then THAT will probably be happening next. This is probably the reason why he can be resistant to a sudden change of plan. Every school day the minibus comes to the end of the drive to collect Freddie for school. But today the bus was rather late. Then I had a phone call from one of the chaperones to say that the bus had been stuck for ten minutes on the main road that leads to our little estate, behind the huge vehicles of a maintenance crew who were resurfacing the road; could I possibly walk Freddie down to the main road? In the background I could hear that some of the other children were getting distressed – they like their predictable routines, too. I told her I would, but it might take me some time to coax him to do something different. Then I took a deep breath and …

Freddie was an absolute star. I explained the road was being mended, which meant the bus couldn’t drive over it to get to our house, so we’d have to walk to meet the bus on the main road. He was playing a game on my phone while he waited for the bus – his reward for completing all the steps on his morning routine. Usually he’s allowed to carry the phone to the bus at the end of the drive, and gives it back to me before going up the step. I told him we couldn’t walk down the street playing a game, we’d have to leave the phone behind, and straight away he let me have it back. He took my hand and walked nicely all the way off the estate; no refusals, no pulling his hand out of mine, no flop-and-drop. He jumped up onto the bus and went straight to his seat, and the bus was able to turn around and continue on its way again )much to the relief of everyone aboard).

And it was a lovely sunny morning too. 

Can’t be bad 😁

My Life As It Was Meant To Be: A Firefly Community post.

This post, on Firefly Community, goes some way, perhaps, to explaining why I found it relatively easy to decide to go ahead with a pregnancy in which I knew I had a 1-in-12 chance of having a baby with Down’s Syndrome; and why I was able to face his diagnosis with less fear than most:

Blogging About Disability part two: A Firefly Community post

In the second part of this two-part post on Firefly Community, on the subject of blogging about disability, I talk about what we should take into consideration when choosing terminology to use when blogging about (another person’s) disability.