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15th May 2018.

Freddie and me have had a good morning. He was very cooperative and got ready so quickly that we had time for him to play on his iPad for 15 minutes AND a quick game of catch in the garden before setting out for school.
#positiveparenting #mummyblogger #pblogger #SENDblogger #behaviour

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15th May 2018: Forecast for the Week – Unsettled.

The last couple of weeks have been stressful. Freddie has been uncooperative and ‘acting up’ at home, especially when it comes to completing his morning and evening routines. Very likely the house move is catching up with him.  At Easter I said that Freddie had settled into the new house better than any of us; having said this I had anticipated that he’d be OK for the first couple of weeks and then we’d see a deterioration in his behaviour for a while. It’s taken six or seven weeks. He still says ‘I like the new house’, but on two occasions over the past fortnight he has said ‘go old house’. I’ve explained that another family live there now, and that the new house is our home, and all our stuff is here, and he seems to accept that.

We’ve followed the same morning and evening routines for a long time now, but, since the new house is very different to the old one, the logistics of our morning are different. I’m always wary of changing his routine, as predictable, familiar routines help him feel safe and make sense of things,  but I think we may have to make some changes to help things work better in our current  circumstances.

It’s at times like this that I refer back to David Stein’s book. It’s not a cure all, but, for us, understanding why certain behaviours tend to occur, helps us to see why certain solutions work; in turn this helps us stick at it, even when it seems to take a while to work. Revisiting the book when we’re having more difficult times reminds what we’re meant to be doing and why, and makes us pull our socks up a bit, in areas where we may have got a bit slack. It also helps us come up with little tweaks  of our own to make the techniques suggested work for us. So that’s my bedtime reading for this week. Wish me luck in getting us all back on track.

Teacher’s Day: The Specialists – A Firefly Community Post.

Both the UK and the US have Teacher Appreciation Days this week. I’ve written a post for Firefly Community about the very special educators in Freddie’s life. Special education is regarded by many parents as the poor relation of mainstream education; very much second best, even as ‘giving up’ on your child. But my experiences have led me to a very different conclusion. Please join me over on the Firefly Community website to find out what that is:

http://community.fireflyfriends.com/blog/article/teachers-day-the-specialists

13th April 2018 A Moving Story.

Good morning world! Now that we at long last we are finally connected to the internet, it’s time to start blogging again. But lack of internet connection is not the only reason why I haven’t written for a while. I don’t quite know how to describe the start of this year … except that it’s been like being fired out of a cannon. It’s only now that we’ve landed that I can look around and take stock of our surroundings.

Many years ago, in the days before the world wide web existed in anything other than a military application, a friend wrote a letter to me. We hadn’t seen each other for about three weeks and she began her missive: ‘I hope this letter finds you well, although, knowing you, you’ll have run off with an Arab Sheik by now.’ You may gather from those words that I have a reputation for being somewhat capricious or unpredictable. Not the ideal wife and mother in a family where issues like ASD and learning disability mean its other members tend to  thrive on familiarity, predictability and routine. I’ve had to learn not to spring things on people — not even a minor rearrangement of the living room furniture.

But suddenly, a mere two weeks into the new year, when I’d barely come round from the usual Christmas-induced stupor, someone else in the family did something capricious. Something totally unexpected because it was totally out of character.  And it came as a shock.

Arriving home from work one evening, Daddy announced: ‘Sorry I’m late, I’ve been to view a house. I’ve made an offer.’ This was mid-week. By the following Monday our house was on the market. The first viewers came at 10.30 on Wednesday morning, and just before the second viewers were due to come at 11.00 am  our estate agent rang to say we’d had a very acceptable offer from the first couple. On Friday we heard that the offer my husband had made on the house he’d viewed had been accepted. I saw it for the first time the following Tuesday, and did not see it again until the day we moved in, a mere seven weeks after the offer was first made, and on my fiftieth birthday to boot.

I didn’t realise until after we had exchanged contracts that my husband, a Building Surveyor by trade, had not actually conducted his own survey on the house at all. When we moved into our previous house, he and a colleague did a full survey on it, in addition to one required by the mortgage lenders, even though the house was only 15 years old. Usually he does nothing without long and meticulous consideration, endless lists of the pros and cons, written and rewritten, and elaborate spreadsheets detailing the all the costs of every step of the process.

It was only after such careful consideration that we tentatively put it on the market last year. I say tentatively, but you could say reluctantly, because although he had been vacillating over whether or not to sell up for a couple of years, he was still worried that he had, perhaps, rushed the decision. From the start the ducks refused to line up nicely and we pretty quickly decided that we would be better off staying where we were, and doing the place up; after all, the house was very comfortable, albeit in a slightly inconvenient location. Then followed a period of carefully considering what work we wanted to do on the house, how much it would cost, when we would be able to afford it, how long it would take, and whether or not it would be worth it in terms of the value of the house. Then we listed it all in order of priority. We were actually halfway through the first DIY project of the new year when Daddy suddenly announced that we were moving.

We’ve been here nearly a month now — and that’s why we’ve been a month without internet; the house has never been connected before, and this is the earliest anyone has been able to come out and do the neccessary. The house is nearly 90 years old and has been in the same family for all that time, up until the final member of the family line passed away a year ago. Consequently we were shown around by the estate agent. One interesting thing that came up when I went to view the house was that although we were the tenth people to view the house, our attitude was very different to the previous viewers.

Apparently, whilst all the previous viewers had agreed that the house did indeed have great potential, they also all agreed that they didn’t want to take it on because, they said, it needed gutting: it needed 40-or-50-grand spending on it before you could even move in. Neither my husband nor I could understand this — it’s not as if there was a hole in the roof, or the ceilings had fallen in, or problems with subsidence, or dry rot, or damp. The roof is in good repair, and not only are the ceilings intact, but they’re papered with rather lovely, if somewhat dated, Anaglypta (that resembles ornate plasterwork), the kitchen and bathroom are old-fashioned, but in full working order, and the peculiar refinement of a bidet (in the bathroom, of course) is something we’ve quickly come to appreciate. It seems that we were the only people who looked around and considered that it would be possible to move into the house as it is, and do the work needed to bring it into the 21st Century as we went along.

The difference is one of expectations.

We didn’t picture ourselves moving into our dream home. As far as we are concerned, the perfect ‘dream’ home is as much of a pipe-dream as the perfect family. We don’t expect perfection. We are learning to inhabit this space as it is, for the time being. In due course we will adapt the house to suit us; and thus the two ends will meet half-way.

The person who has learnt to inhabit this space most quickly of all is Freddie. I did expect some deterioration in his behaviour, as moving house is such a big upheaval, a disruption of everything that makes you feel safe and gives you your sense of place and belonging. But so far, he seems to have been his usual self. I did enlist the help of his teachers as moving day drew nearer. They sent home the Oxford Reading Tree books in which Biff, Chip and Kipper, et al, move house for him to reprise, and they talked to him, in a general sort of way during normal conversation about moving day and the new house. I also got him watching the Topsy and Tim episodes in which they move house (they take up about two series). He’s a bit old for Topsy and Tim but he likes it, so I knew he’d engage. And the best thing about the move so far is, oddly, that we lost our entitlement to Local Authority transport. I tried him to see if he could walk the distance, and he did! Consistently. There and back. For a whole week before the Easter break. For a long time I’d been wanting to wean him off his reliance on the buggy, but where we lived before was so far from all the places we regularly go to that the distances were just too daunting. Roll on the summer holidays when we can walk to our favourite park together. Next stop — all the way to town!

 

 

 

 

 

9/1/18 From Positive Parenting to Genocide (in 688 words or less).

Do you know what really hacks me off, pisses me off, fucks me off so badly that it makes me want to punch someone in the face?

The phrase: ‘It’s Political Correctness gone mad.’

I come across it time and time again whenever someone is called out for using offensive ableist slurs like ‘mong’, ‘retard’, ‘window-licker’, and others. Rarely is there an apology or admission of a mistake made, just the petulant whine ‘You can’t say anything these days, it’s Political correctness gone mad’.

Political Correctness is simply a handy title for the concept of having respect for your fellow man.

No doubt you expect that other people will automatically show respect to you, and you’d be offended if they didn’t. Well then, you need to show that same respect to other people. Treat others as you would want them to treat you.

Show some respect for other people — don’t use language that demeans or dehumanises others, or slang words, like the ones above, that started out as derogatory terms for disabled people. If you do so inadvertantly, please apologise and admit your mistake: we all make them from time to time, and they can be a vlauable learning experience.

Have some respect for yourself, and some pride — don’t parade your ignorance and pitiful vocabulary in public. Learn better, kinder words — they speak for your character in the eyes (and ears) of the world.

I know, I’m preaching again, and nobody wants to hear that. But I’m not going to stop, because I believe I’m right, and when I’m right I won’t shut up just for the sake of being liked, of being thought nice. All the niceness in the world won’t do any good if it makes us ignore the bad things.

There’s a page on Facebook that calls itself ‘Positive Parenting: Toddlers and Beyond that has repeatedly used the word ‘spaz’ in its posts, despite many previous complaints about its use, none of which it has made any attempt to address. It has a lot of followers and looks ‘professional’. I won’t post a link to it, I don’t want to drive any traffic to the page if I can avoid it.

Positive Parenting, my arse! Such high-handed disregard for others flies in the face of everything Positive Parenting stands for. Anyone with an attitude like that couldn’t Positively Parent a cockroach, never mind a child.

But it’s only a word, they don’t mean anything by it, they aren’t talking about a disabled person, sticks and stones and all that … honestly, you can’t say anything these days without someone getting offended, it’s Political Correctness gone mad …

NO! If you’ve offended someone the problem lies with YOU for giving offense, not with them for being the one offended against. And it doesn’t just cause offence, it causes actual harm. Because when you do this, even casually, or in jest, even if it is not aimed directly at a disabled person, you degrade disabled people by turning them into a living insult, a by-word for something inherently despicable or disgusting. This, in turn contributes to, and perpetuates, the negative perceptions of disability in society, and, by a slow, continuous drip-feed effect, leads to disabled people being viewed as something other than human, as ‘less than’, ‘invalid’, and so gradually they are disregarded and ignored, their needs a mystery that the majority population thinks it need not concern itself with. And this, again, by slow, eroding drips, leads to poor public planning, to a lack of services, and accessible buildings and facilities. Ultimately, this leads some in society, who pride themselves on being intellectually superior, rational, scientific beings, to assert that these pitiful sub-humans (as they view them) would be better off dead, and they should, therefore, be subject to eugenic abortion and/or euthanasia.

There is, of course, another word for the targetted extermination of groups of people based on a shared characteristic, but the intellectuals, the influencers, and the policy-makers never use it, because it carries a much more negative connotation than the rational-and-scientific sounding term ‘eugenics’. It is a term associated with criminality and evil: Genocide.

You see, words DO matter.

 

 

 

 

29/12/17 Happy Hibernation.

I’m going to say this very quietly, otherwise I may come under a hail of heavy missiles from my fellow parents …

We didn’t get up until ten o’clock this morning.

We (that is, Daddy and me) went to a wedding reception last night, leaving Freddie in the care of his big brother and sister, who are almost 21 and 18 respectively. They are both perfectly capable, and legally old enough, to look after him, and he is happy and confident in their care. In fact, big sister got him tucked up in bed and asleep before we left the house. We had a very pleasant evening; I danced for a whole ten minutes before my knees began to complain (with somebody young enough to be my son, but unfortunately Daddy didn’t notice – he was too busy with his duties as an elder, advising the Groom that he must now knock out a couple of kids as soon as possible, because to carry on living a carefree existence now that he has joined the ranks of married men simply wouldn’t be fair to all the others). We got home just after eleven, bearing milk and bread we had picked up on the way back (marital responsibility is never really very far away).

Freddie woke up at about 7.30. this morning. I made sure his stool and toilet seat were in place, fetched him a drink while he went to the loo, then got back into bed. He came in for a snuggle, and then amused himself quite happily while we snoozed (whether or not we will be happy with the way he chose to amuse himself remains to be seen, however — we’ve come down to find faces drawn on lampshades before …)

In our house we are close to declaring Christmas a Festival of Hibernation. Daddy usually has the whole week off work, but you won’t find us taking rictus-grinned selfies of ourselves engaging in regulation ‘Quality Family Time’, festively hurling missiles of compacted ice at each other in the local park (though it is much more tempting to visit when you can’t see the dog poo for the snow): or savouring the luxury of a crowded restaurant where your drinks come diluted with waitresses’ tears, because the kitchens can’t get the orders out fast enough: or enjoying the pay-through-the-nose priviledge of listening to a hundred or so other kids screaming and tantrumming at the Panto, while Freddie looks on, clearly mystified, perhaps wondering in his head if that’s how people are supposed to behave when they’re in a theatre. I know, I know, you shouldn’t complain about other people’s children, after all, kids will be kids, and they’re only young, and so on … unless it’s obvious that your child has a disability of some kind: then everyone and anyone has the perfect right to complain about your child, loudly, in your hearing, or even in your face, apparently. I say ‘apparently’ because I know many, many parents who have experienced this, but I never have myself. This is not because I am especially competant or especially blessed in some way, but more likely because I have been cursed with a case of Resting Bitch Face so bad it would make Medusa jealous. Nobody who didn’t have an active death-wish would bloody dare. Maybe this face is a blessing after all.

It’s not that we can’t go out and enjoy Quality Family Time, but because, at this time of year, we can’t be arsed. We really do just nestle down in the house for a whole week, enjoying the comforts of soft pyjamas, fleecy blankets, hot chocolate, films, books, and FOOD. I wish we could do that right through till March, to be honest. I’m sure I have evolved from some sort of hibernating species.

Actually, there was a small flurry of fully-dressed activity on Boxing Day (was that Tuesday?). Daddy put on his DIY clothes and built a Lego Triceratops with Freddie (well, you can never be quite sure how these things are going to turn out – even the most innocuous craft-type activity with children can easily result in the need to repaint walls). Lego seems to be very good for promoting the development of fine motor skills and concentration. In my day, though, we didn’t have all these fancy sets designed to build something specific, you just got a big tub of assorted components that required you to use your imagination to decide what you wanted to build. And, very often, even more imagination to see the resemblence of the finished model to the thing you intended it to be. I love Lego. there’s bound to be someone out there with an objection to Lego, but I love it. I think we should do more Lego with Freddie, especially through the winter months: living just a couple of miles away from an area knkwn as ‘The Marsh’ it’s unlikely that we’ll be able to use the basketball set before May, although I could probably run a profitable side-line in illicit mud-wrestling contests — you know, like underground bare-knuckle fights, but with swimwear and no skull fractures. I’m sure my neighbours wouldn’t object (especially if I gave them a discount).

 

This Christmas has been marked by a noticeable absence of plastic tat. Freddie has received mostly books (non-fiction, about animals), Lego (plastic, but not tat), and die-cast vehicles (also not tat, Cars 3 merchandise – therefore mainstream-interest, and yes, he has seen the film, at the cinema, with other kids). I stand by my unconventional choice of lamb for Christmas dinner, because all the leftovers have been eaten – very finely chopped the remaining meat made a tasty Shepherd’s Pie, something Freddie will eat till the cows come home (but obviously not till the sheep come home, because they’re not going to be coming home, are they…)

I know what you’re thinking: this is supposed to be a blog about Down’s Syndrome, and I haven’t mentioned it once.

That’s how little it has impacted on our day-to-day lives this Christmas. It’s true he has been on antibiotics for a skin infection, to which he is prone: but this is a far cry away from the promises the doctors made when he was born – that we would spend every Christmas at his bedside in hospital while he battled dire chest infections. Touch wood, he hasn’t yet been an inpatient since he was six weeks old. We’ve had only one major outbreak of stubborn non-compliance, when I forgot to warn him in advance that half-way through the morning he would have to stop playing, put on his coat and get in the car so Daddy could drop me off at the dentist, but that was my own fault for not following procedure.

Oh, and I was inordinately pleased to see actor Daniel Laurie appearing again in Call The Midwife on Christmas Day.

 

Footnote: a few days before Christmas my daughter announced that she had read that Brussels Sprouts are now being selectively bred to taste sweeter. This is not good. I like the distictive taste of sprouts, the fact that if you put a sprout in your mouth blindfold, you will know without question that it is a sprout and not anything else. Why should everything be made to taste sweet? Why do some people want the world to be forced into some endless parade of bland, homogenised conformity?