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Sunday, 31 January 2016

Real or fake names? Is internet safety clear-cut?

Internet safety is a vast topic which, being a big user of the internet and social media, I have researched and pondered about on more than one occasion.

There are many differing views on it; those who barely ever use it, in case details get cloned or nasty people find out where you live, to those who do online banking and don't think twice before posting intimate things on Facebook (often helped by a glass of wine or two).

I think we all have friends or family who fall into one of those two descriptions, but we also know plenty of others who sit somewhere in the middle - or who like me, can swing from one side of the line to the other depending on what day it is or how good you are feeling.

Some choose to never use real names, some wouldn't dream of posting a picture of their child on the internet. Six years ago, I started by doing both of these things. My blog has always been about our personal story, and originally I didn't think many people other than family and friends would read it.

When I decided a few months back that I would change the girls' names on my blog so they weren't immediately identifiable, I was following the example set by the write of my favourite blog (A Diary of a Mom). To be brutally honest though, she has more readers than I could ever dream of, so I'd say it's more of a worry for her. I totally agreed with her decision at that time, and felt it was the right thing to do.

As our eldest approaches the next stage of schooling, where she will mix with children who are becoming ever more independent, and who are big users of the internet and social media, I wanted to try and remove the chances of bullies finding information about her which they may be able to use against her. So I set about changing the girls' names to random new ones (Tilly and Sophie it was, as I let Tamsin choose and funnily enough she was drawn to the name of someone else she liked to watch on YouTube).

I've discussed all of this with Tamsin along the way - even from the beginning, she was adamant she was comfortable with my blog and everything we've put on there. As she gets older, some of the material may embarrass her more, or she may like to laugh as she looks back at it and remember the fun we had. Probably both of these things will happen, at different times. Sasha is still at the stage where she doesn't understand much about the blog, or her difficulties, but of course we will talk more when the time is right for her.

The trouble was that it never felt comfortable for me to write those names for my children. It made me stop every time, and when I read it back it just didn't feel right. So I got into the habit of replacing the names with 'oldest daughter' and 'youngest daughter'. That just felt too cumbersome to be putting in every post though, and I started to consider using just initials. Again, it didn't read right.

So I took a step back and thought long and hard about it. I'm switching back to what feels right for me, so that I don't give up writing all together. I've always wanted to be open and honest while I share our story, so it's too difficult to lie about the girls' names. I can't help wanting to share photos of my girls either; if I'm honest, it's also hard work trying to find free and relevant photos of anything else to share with every blog post!

In terms of bullies, I think they'd find a way to cause trouble with or without a blog, and we're better off educating Tamsin on how to deal with that rather than trying to avoid the issue. We already had that opportunity a couple of years ago, when we first posted a Minecraft animation about Stampy that Tamsin had made to YouTube (it's had over 70,000 views, and 325 comments), and she received a wide mix of comments before we worked out how to disable them.... It was actually a really useful learning experience though, and going forward everyone can be reminded that she was only 8 when she made that, so it was age relevant at that time. We're just about to go through similar with Sasha too, as she has independently worked out how to leave comments on YouTube videos herself... under my name though, which is slightly worrying!

I appreciate that these decisions will be different for other people, and that there will be plenty who disagree with what I'm doing, but we all have to make our own mistakes (or successes) in life and so for now this is my choice. I'm not promising I won't change my mind again in the future of course...

To finish, here is the obligatory picture to help make the post more interesting ;)

www.stephstwogirls.co.uk

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Wednesday, 27 January 2016

Parents are Experts

There's a lot of good blog posts out there on what it's like to be a parent of a child with additional needs. 

A great post which I've just come across is called 'Am I spoiling my child or accommodating his special needs?' and below is an excerpt from it. It's so great that I just had to reblog some of the words here.

An accommodation is something that helps your child function as close to the level as possible of other children who do not have the same special needs. With autism, many accommodations are social accommodations, like not requiring him to eat at the table. Social accommodations are more likely to be perceived as spoiling, because the need is not as obvious as the child requiring a wheelchair or hearing aids. Your child has clearly shown us that he needs help to function in certain situations. You are accommodating him so that he can interact with and engage in the world as much as possible. That is not spoiling him. That is helping him. That is being his mom.

Spoiling and accommodating are two words which are similar and can be interchanged. I know that I have to live with the knowledge that other people believe I am not strict enough with my autistic girl; that if I just stopped letting her choose so much then she would eventually give up wanting to have control herself. Erm, if only it was that easy. Don't you think I would if I could?! There's a reason she has a diagnosis of autism with pathological demand avoidance (PDA*) behaviours; it's not just a label made up for the fun of it. I don't spoil her; I make allowances (or accommodations) for her needs. It's different. 

Of course I do spoil her on occasion too, by buying her one more toy, or letting her have a little more time on the technology of her choosing for example, but it's not constant, and it's no more than other parents on average. We do teach boundaries, and she most definitely knows right from wrong where it matters. Those boundaries may just be different in our house to yours; I personally don't think that trying to force her to sit at a dining table and eat 'properly' is ever going to have that desired effect of us all being able to go out and eat in a posh restaurant. That's one goal I've given up on - maybe it wasn't so important to me in the first place though. In that case, it definitely shouldn't bother you.

Sadly I'm not sure of the exact source of this writing below; I do know it was given to me during an Early Support course which I used to be a Trainer for, and it has stuck with me ever since. Early Support was a great government initiative which has sadly fallen by the wayside in times of cost-cutting, but it was a lifeline to me not long after our daughter's diagnosis (reminiscing here but an old post of mine talked about this). 

Early Support was intended to help parents of children newly diagnosed with any kind of special needs find their way through the jungle of information on Special Needs (see also Special Needs Jungle, another great resource) and there are many free resources available to help parents which I hope to go into more another time. For now, this is the key message I'd like to be taken away:


I need as many other mums as possible to read this post, because it's important. It was easier for me, with an older, typically developing (or NT, neurotypical) child to compare our youngest with; in some ways I could see the difference. I feel strongly though for all those who don't have the benefit of a close example and who do have to put up with their parenting being challenged. The challenges can often be verbal, but almost as bad is the knowledge that others are thinking it even when they're not saying it.

None of us are perfect of course, but so many mums are crumbling needlessly under the weight of others' opinions and I want to send them this reminder. In 99% of cases, YOU, as the parent/carer, are the only expert in YOUR child. You spend the most time with them. Every child is different and may benefit from a different approach. Please stay strong and confident in your own abilities to parent. For those reading who have friends or acquaintances with children with additional needs, please bear in mind that a little support can go a long way in most cases.



Sons, Sand & Sauvignon

* for more reading on PDA (Pathological Demand Avoidance), a type of autism, please visit www.pdasociety.org.uk.
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Wednesday, 20 January 2016

Is praise good for everyone?

So today was the first Sweetherts dance class back in the New Year (to see how this went for us before Christmas, please read my previous post The chance to dance). The girls were very excited about going again, and were delighted to see the same great teacher.


Today, in half an hour, the three girls in the class managed to choreograph a whole funky dance routine together (to Fight Song) and then perform it for mums at the end of the session.

It brought a tear to my eye (as far too many things seem to do these days...); for our youngest to be able to express her creative side and also actually follow through on directions is nothing short of amazing.

At the beginning she scrunched her face up with the shyness/embarrassment of being watched, but it was clear she wanted to perform the routine anyway - I think her love for music just overruled the anxiety. At the end, the mums clapped (of course) and youngest girl clapped her hands to her ears, to stop the noise.

All brilliant. Then at bedtime, I whispered to her how much I had loved it, and that I thought it was amazing that she had worked with the others to make the dance up. I was going off the premise that if she knew how much we had enjoyed it, she might feel proud and want to do it again.

Her reply, with a sigh, was:

'Mummy, you don't have to do that, congratulate me, you know. I kind of like to be happy and proud but no clapping, too noisy. Too erm, congratulating. You know me, I don't like too much noise or too much people. Anyway, I wanted to do the whole dance, not just my bit.'

Love how that's told me. Too much praise is not a good thing for many autistic children; it can be overwhelming. On top of that, the noise of clapping has always caused our girl issues, despite the fact she is very able to make more noise than that herself!

It also highlights how difficult it was for her to share the choreography with the other two girls, and to not be in control of the whole dance herself. I count every time that she agrees to relinquish a little control as a huge achievement - but with the understanding that it must always be baby steps and done in a 'fun' way.

To finish off on a tangent... for a while when she was younger, I kept a record of the strange turn of phrase. It's at times like this that I feel hugely disappointed with the lack of Speech and Therapy input over the last six years. We've received no support and yet it is clearly an area where some work could be done - if only someone could make a 'fun' YouTube video playing Minecraft whilst speaking perfect Queen's English (minus American slang such as her current favourite, 'butt'), I'm sure there'd be huge excitement in the autism mums community.....
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Saturday, 16 January 2016

Siblings ~ January 2016

Time flies when you're having fun. It's that time of the month again; time to join in with the Siblings Project. It's a very addictive habit but I do love how it's made me document the girls growing up on a monthly basis - this is the start of my third year of taking part!

www.stephstwogirls.co.ukThis year is off to a very exciting start as we begin to clear our new house and start thinking about how we are going to turn it into our family home. This month's photos were taken on a day when we popped over there to let Daddy have a play in the garden. Us girls stayed inside the house, although to be fair it wasn't much warmer in there. We stood back as we switched the heating on and prayed it would jump into action... it did, phew!

www.stephstwogirls.co.uk

We had so much fun, just being a little crazy. The next couple are not strictly siblings alone but I wanted to throw in a couple where I played with the timer too.... just be grateful for all the other crazy ones I'm not including!




www.stephstwogirls.co.uk

The girls love having so much room to run around in so I'm thinking we need to go for a minimalist design. That's one reason... lack of funds after the building work might be another. Anyhow we hope you'll enjoy watching our journey this year and I hope the girls (and their parents) are still smiling this much in December!





The Me and Mine Project
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Thursday, 14 January 2016

Six years on; still talking about autism

Six years ago, after an initial speech therapy assessment, I took our youngest girl to be seen by a paediatrician. My first blog post was written that day and was titled 'Today - a diagnosis of autism?'. 

The post was short; I had too many questions swirling round my mind and no real answers. The word 'autism' had sprung into our daily lives, and has been a constant companion ever since.


www.stephstwogirls.co.uk
December 2009, aged 2.5, just before diagnosis
The diagnosis was a complete shock at the time, but was strangely also a huge relief. We had asked for speech therapy as her sounds were unclear, and we also requested hearing tests as we weren't sure she was hearing us correctly (we were to find out later that this is a very common pattern of events!). We knew some of her behaviour was somewhat different to our eldest girl's, but as youngest girl was only 2 and a half, we hadn't dwelt on it and had just assumed it was the actions of a more 'forceful' toddler.

The relief was about being able to explain to others why I acted in a certain way with our youngest, somewhat different to how our eldest was parented. The diagnosis was justification, in my mind, for the less strict and traditional methods of parenting we were being forced into. This wasn't an active lifestyle choice as such; it is true we could have continued to try and impose our demands and those conventional methods on her, but we chose to keep the calm as much as possible for the sake of the whole family.

We probably did fight it, and her, for a while though, until we came across articles about Pathological Demand Avoidance (PDA). It was at that point that we realised why traditional parenting was counter-productive, and we also discovered that the standard methods for helping autistic children mostly didn't work for our girl.

Six years down the line, it feels like we are still riding a roller coaster, but one which no longer has those extreme peaks and troughs. Toddlerhood has passed, we're hitting the age of her becoming more aware of her own differences but still not fully grasping it, and puberty is yet to come (oh joy!). Our experiences have taught us plenty along the way though and it feels less like walking on eggshells (a common expression from parents and carers of children with PDA) and more like managing plans A, B, Z and several others inbetween. Much forward planning and flexibility is vital, but life is good.


www.stephstwogirls.co.uk
December 2015, six years later
A few days ago though, I posted to my Facebook page and subsequently my blog about what our youngest had said to me about being sad and lonely at play times.

Then last week I took her for an after school trial at the gym club where she had held her 8th birthday party. She's not taken part in any mainstream club since she left Brownies last year, and I was anxious about how the new experience would go. I had considered sending a 1-1 support worker in to the session with her, but staff at the gym (Sapphire Gymnastics Club) were brilliant and assured me that they would give her the support she needed. The good news is that she wants to go back next week (yay!); the slightly sad news was what prompted thoughts for this post in the first place.

As we waited in the holding area for our girl's class to begin, she spotted the other children standing with their parents too. In a loud whisper (meaning she thought no-one could hear her, but they could) she told me excitedly that she wanted to go and make friends with the small girl standing nearest to us. She told me that she wanted to compliment her on the leotard she was wearing, and 'find out things about her'.

'Awwww', I can hear you say. Yes, I agree, very sweet, but how am I supposed to explain that that is not what children do? That most other children would feel quite intimidated by a full-on approach like that from someone they've never seen before? Our girl wants to be sociable, but she doesn't know the 'rules'. You know, those unwritten ones, that help to establish who is on the autistic spectrum or not.

I was saved from having to choose between letting the 'friend-making mission' go ahead or trying to explain why it might not work when our girl decided instead to go and join the small queue forming by the door into the gym. I watched as she introduced herself loudly to the three girls there, at the same time as bowing her head and scuffing the floor. She blurted out her own memorised script of her name and how old she is, then proceeded to ask them for their names. One girl must have had a slightly unusual name, or a quiet voice, as our girl turned away, then after a few moments asked her for it again. Then she passed on some more random information before turning to the girl a third time and saying 'I'm sorry, I've forgotten your name again'. This all sounds very polite and not unusual, but if you knew our girl and heard how she talks, you would then understand the emotions I could see running over the faces of those girls standing with mine. A quick glance over their shoulders to see if anyone else was listening, then flickers at each other to try and grasp whether they were hearing right. The rapid realisation that this girl talking to them was different, was not one of them, did not know 'the rules'.

After six years (yes, it took THAT long for the penny to drop), it has dawned on me that I may have made some mistakes in terms of how I write. I'm an 'old' blogger now; I know the games I should be playing to get up high in the Bloggers' charts, to get more exposure and to achieve the overall aim of getting more people to read my words. I should learn about SEO (Search Engine Optimisation), redesign my blog and be more selective with my use of social media in order to maximise my own page views. It might sound harsh, but I should concentrate on a few key relationships with prominent bloggers rather than trying to be friends with everyone. I should keep my posts short (ha!). I see hundreds of 'letter' posts go viral, and I know that I should sit down and write an open letter to the myriad of people, professional and personal, good and bad, who have been involved in our lives since that first diagnosis. I'm not promising I won't do any of that in future of course...

That's not how I've managed my blogging though. I'm just trying to get my message across, to help my family and others. Up until now, it could be that my posts have focused more on how I'm feeling than I intended them to. My aim has always been to try and spread understanding, but I didn't mean for that to be an understanding of me and my emotions. I was hoping to help educate and let people know about autism; more specifically about how some people with autism may act, and what challenges they may face.

I think I've been missing the real message off the end of every post. I've been leaving readers to draw their own conclusions, and I'm hoping now that the conclusions weren't that I wanted pity. Pity was one of the first emotions I felt being thrown at me when I started to talk about our girl's diagnosis, and it was the least helpful approach I've experienced. I don't want or need pity and neither does my girl. What she does need, is a certain level of understanding and acceptance.

So to be clear, my message is: Please talk to your children and your friends about this, about Autism.

Explain that they should be kind and caring to everyone. No matter how they talk, or act, or what they look like. It is an inbuilt part of human nature that first impressions count, but teach them to think again, to not judge, to take time to understand. Feel free to ask me any questions you like about it; I'm happy to tell you what I know.

Autism should not be a scary word. It won't do any damage. Autism just IS; it exists, it's a way that the minds of many children think these days. Just as gay people should be allowed to be out and proud, and any person of any race, of any colour should be a part of any society, autistic people should be celebrated for who they are. Not revered, or demonised, or given a wide berth and avoided, just accepted and welcomed. Everyone needs to understand the differences, and this can only happen if we continue to talk about autism.


For more information on PDA, please visit the PDA Society webpage.

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Wednesday, 13 January 2016

New Teletubbies Toys Review

You're never too old for Teletubbies... honestly, I think I was as excited as the girls when I heard that Character Options were releasing new Teletubbies toys!


Amazingly, it's been 18 years since the last lot of Teletubbies toys were released (we still have quite a few of those!) and I'm sure the new ones will be loved every bit as much.

In our box we had a variety of items to test; three soft plush toys and three hard plastic ones.

The smallest 6 inch plush toys (RRP £6.99) are supersoft and just the right size for little ones to grab. Just because I can, I'm showing you the difference between old and new Dipsy - what sticks out most for me is the change in eyes! The new one is slightly bigger and the faces are now flocked and soft to touch.


Then we had two larger talking soft toys to cuddle, RRP £9.99 (Po and Laa-Laa for us). Again, these are supersoft all over, and when you press the tummy they have a variety of phrases to say randomly, including the famous 'eh-oh', 'Po' or 'Laa-Laa', 'again again' and plenty of giggles.


There are mini collectables with a good RRP of £3.99 (I've already been told we have to have the full set) which are small hard plastic characters holding their favourite item (so in our case Tinky-Winky has the red handbag, Po has her scooter etc). There's also a Noo-Noo in this range, my own personal favourite...



The Tickle and Glow Po (RRP £14.99) has poseable arms which adds to the play value. It took us a moment or two to work out that you tickle (or press) its chest rather than the tummy panel to elicit a giggle, and then the tummy panel lights up. Apart from the giggle, the same phrases as per the talking soft toys will come out randomly to keep you on your toes, and if left alone for a while Po can surprise you by calling out (unless you use the 'off' button).












The Tubby Phone (RRP £9.99) also has light and sound effects; four coloured buttons along the bottom which will light up the corresponding Teletubby on screen when pressed. The screen is mirrored, which will entertain for hours!
On the first press the phone rings and the voice says 'eh-oh', then press again and it says 'hello Po' (or whichever character), third press says 'hello Teletubbies' and fourth gives a 'Tubby phone party' plus a little tune. If you leave the phone alone for a while it will ring and flash up all four character pics individually to grab the child's attention. As with the Tickle and Glow Po, this toy has an on/off switch which is always a bonus to save batteries/your sanity.

So that's the fab new toys we got to see and I'm sure they will be a big hit with many. There are more options over on the Character website - I love the look of the Drive and Steer Noo-Noo!

There will be a Twitter frenzy on Wednesday 20th January at 1pm using the hashtag #TeletubbiesToys and if you're a Teletubbies fan I'm sure it will be worth your while joining in!





Disclosure: We were sent the above products for the purpose of this review. All the views expressed here are our own. 

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Tuesday, 12 January 2016

Can autistic people be sociable?

It's a common myth that children with autism are not sociable. Autistic children can be keen to make and keep friends, but may struggle with knowing the unwritten 'rules' and therefore have difficulty maintaining friendships.

Recently, our youngest girl sighed as she told me the following:


'Mummy, Thursdays we always have lunch last, because we are nearly always late back from swimming, but I don't mind that anyway because then there's not much playtime left, and I don't have to spend so much time sitting being sad and lonely like the other days.'


She went on to say that the only thing she could think of to do at lunchtimes would be to sit at the computer, but she knew she would get bored with that too.

Sniff. 

As a parent, it is never nice to hear that your child is alone or unhappy. In a post about this time last year, I spoke of friendship groups and corresponding difficulties for our girl. I know the struggle with friends can happen for many children, at different times in their school lives, but it is NOT the same struggle for NT (neurotypical/typically developing) children. Those children can generally work their way through issues and learn from them, especially if given a little help from adults.


The lack of social understanding for autistic children creates such a huge divide, but often doesn't stop them wanting to be sociable. They just don't know the rules, and they are generally unaware of what will make other children think they're 'weird'. Even if good social behaviour is modelled for autistic children to learn from, there may be other issues such as sensory sensitivities which interfere with their ability to replicate that behaviour at any given time. 

Our eldest girl recently told me about all the times she has been in the younger year group playground (as one of the oldest at school, taking on a 'squabble squasher'/playtime help role with the youngest). The younger children come up to her and ask her why her sister is weird, why she makes strange noises whilst in the toilets, why she shouts and gets upset, why she puts everything in her mouth. Our eldest doesn't really have the answers to all of this and is understandably embarrassed. My heart aches for her too.

I honestly don't expect the other children to be friends with my girl, or for them to always include her in their games. I'm amazed how often they do try to include her, and how accepting they are on the whole. I'm guessing that some of them do like her and want to be her friend, but she is unpredictable and of course I can see how that makes it quite difficult for everyone. I hope that adults in the playground keep an eye out and remember just how extra difficult these social times are for autistic children. I appreciate that it's a very difficult situation all round though; I'm sure they do look her way, and I know some time is spent trying to involve her too, but they probably quite often see our girl running around doing her own thing, or kicking her heels in the mud, and think that she just likes to be alone. It could just be worth an extra check.


Sons, Sand & Sauvignon
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Monday, 11 January 2016

{Siblings 2015}

A quick update just for the records - all our 'Siblings' pics from last year. One photo for each month, though I generally couldn't stick to one in most of my posts.... just thought it would be nice to highlight the progression (of the girls, sadly not of my photo taking skills).

January 15
February 15

March 15

April 15

May 15
June 15

July 15
 
August 15

September 15

October 15

November 15
December 15
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Sunday, 3 January 2016

What does testing achieve?

Today, this post about new plans unveiled by education secretary Nicky Morgan has flashed up in my timeline; in short, she has decided we should test every 11 year old on their 12 times tables.
www.stephstwogirls.co.uk
Free times tables printable for you... do you know yours?!
It's difficult to put into words how frustrated I am with all these new tests that 'they' keep coming out with. To me it feels like further discrimination against those children who are not particularly suited to tests. That includes children who are not capable at learning at the same rate as the masses, those who are classed as having a learning disability. It also includes children who do actually know the answers, but who, due to high anxiety, are not capable of regurgitating them under exam/test conditions.

Our youngest girl is autistic. She is not classed as having a learning disability; in fact in certain areas she can outperform her peers in terms of knowledge. Our reports from Great Ormond Street clearly state that she has superior perceptual reasoning skills; she would be in the top 6% of children her age for that. Her language memory score placed her in the top 12% of typically developing children of her age where English is their only language. Her verbal comprehension is average, but her working memory, processing speed and executive functioning are all low. Maths is one of her stronger subjects as it happens but it's unlikely she would ever recall a times table parrot fashion for anyone. She doesn't learn that way.

Autism is a disability. Our girl may not have a learning disability in terms of her overall intelligence, but she certainly does have a disability when it comes to accessing the learning. We are considering secondary schools classed as MLD (for moderate learning disabilities) because the sheer size and conformity aspect of mainstream secondaries will be a huge barrier for her (I go into more detail about this in my post about schooling for high-functioning autism).

She is unable to sit and concentrate on written work for any length of time; certainly not under exam conditions. At the end of her infant education, the staff took her separately for verbal testing and tried various ways to discover what she knew (one of these was chiming a bell as she answered maths questions!). Thanks to the removal of the coursework aspects from most subjects, we are guessing that our girl is now unlikely to gain any GCSE qualifications. That doesn't make her 'stupid', far from it. Her talents should be recognised and built upon just as they should for any child.

So who are all these tests for? Are they really for the teachers, to ensure that the strict curriculum is being taught in school? Or are they to ensure only survival of the fittest? How much talent is being missed out with this narrow-minded attitude?

It's true that some exceptional people find their way to the top despite not being good at traditional school life; common examples are Richard Branson, Bill Gates and Mark Zuckerberg, but how about others such as Sean Connery, Simon Cowell and Sir Alan Sugar? There must be many more who have been beaten into submission before realising their true potential. The unnecessary pressure will no doubt have caused mental health problems for some - and plenty of money will have been spent treating those people and trying to fix a problem caused by the introduction of more and more ridiculous tests. Where will it all end?

Maybe what this country needs is more teachers who are allowed to follow their passion for teaching; those who want to develop each child to their full potential and help create well-rounded individuals rather than only concentrate on the academic achievers. We don't all need to know our 12 times tables. I'm guessing there are plenty of app developers who don't, and where would we be these days without all the apps we now use on our phones and tablets (which incidentally, can also be used as calculators)?!

All these tests seem to achieve is a tidal wave of teachers who no longer want to be involved in educating in such a prescriptive way. Their passion is squashed and instead of being allowed to inspire and lead, they are forced to prepare all children for the same limited testing which tells us little about their abilities. I'm wondering if there are increasing numbers of children being educated at home, and whether those figures are being recorded and analysed by one of these maths geniuses.

I've not heard anyone in favour of these tests yet. Is it time to start thinking outside the box?


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