Screen time & gaming! The eternal conflict!

Here are some of my rambling thoughts from a conversation I was having recently with a friend of mine.

They are about gaming and screen time and the internal (and external) conflict these issues create.

Afternoon!

I do understand your concerns about the amount of time spent in front of a screen.

I guess what I would say, is how much time does an adult spend looking at screens (work, tv, phone, tablet etc) and is it really that different? 

I know for me for example, that it is very little but, you could easily equate a love of screens with a love of books and the amount of time I spend (would spend) with my nose in a book (my passion) would easily match up. I guess books seem benign (although they aren't in terms of impact on your eyes I'm sure)!

I think the optician who said the blue light from screens damages your eyes could well be right, but again, long term studies are thin on the ground (non-existent?) and there could also be many benefits for the eyes. We know that neurologists are discovering gaming benefits for the brain all the time.

Upon being asked for some links:

The only other links I have come across recently have been related to the brain scans of addicts (drug addicts and computer addicts specifically) and they show enlarged 'pleasure centres' in the brains of these individuals (not surprising). 

They do not however seem to know which came first (the enhanced pleasure centre or the addiction) so it is hard to determine causality.

(I have put some links below that cover some of the recent scientific studies)

I guess I'd also like to add that, yes, it does worry me some days how much time my PDA son spends in front of a screen BUT, I try to remember: it is his passion, he is incredibly talented, he wants to make it his career and he continues to learn and improve all the time. Not sure what more I could ask for really? I know that I would love, love, love to have something that I felt that passionate about. 

As to the addictive nature of gaming - who knows!

Just look at anyone who plays any games (including benign games like Candy Crush or Angry Birds) to see that everyone has the potential for excessive use. 

I think the difference for my son, maybe not for everybody, is that he needs the instant gratification, the trophies, the kudos from team mates, the speed of play, the depth of the graphics (better than real life according to him) and he enjoys the incredible attention to detail required to excel in all the different gaming arenas. 

For him, they are *better* than real life. Much of what I have listed he cannot achieve in real life! 

He has never been able to be on a team. 
He has never won a trophy. 
He has never been the best at something. 

It is no wonder the pleasure centre of his brain fires up when he games! 
He is experiencing a lot of pleasure! 

I can only wish that he found that much pleasure in other areas of life, and maybe one day he will (he does sometimes I guess...swimming, the beach, eating out, cinema, visiting good friends, the trampoline, water balloons, water pistols) but until then, I'm going to let him figure it out. 

He has all the relevant information (with regard to his health and the implications for it long-term) and a good idea of what can happen as a result of so much gaming so ultimately, it is his choice. 

As for everyone else, go with what feels right for your family. 
That's all any of us can do in the end. 

Meh, what does it matter...in the long run we all blame our parents for what goes wrong, right!? 

N x

LINKS - 

7 fascinating TED talks on the benefits of gaming

Gamer Brain Reward System

Video Gaming Can Increase Brain Size and Connectivity

Games not addictive says game addiction clinic founder

How video games can affect adolescent brains

Study Finds Action Gamers Are Better Learners

Is your Aspie a born gamer?

PDA Conference

Just a quick note to let you all know that the PDA Society are having a PDA Conference for parents and carers in September.

PDA Society Conference for Parents and Carers - Booking NOW OPEN!

Written by westd on May 15, 2015

The first ever PDA Society Conference will take place on Wednesday 23 September 2015 from 10:00 to 16:30 at

Park Inn by Radisson Northampton
Silver Street
NN1 2TA Northampton
United Kingdom
 

‘STRONGER TOGETHER’ is the theme that underpins the day. This is an analogy for the strong relationships that need to exist on all levels if our children are to succeed and truly reach their potential.  It also reflects the opportunity this conference provides for parents to develop their own knowledge and meet others with similar interests. 
 

The day will consist of a mixture of speakers, workshops and informal opportunities to meet other parents.
 

Speakers will be:

• Phil Christie, Consultant Child Psychologist
• Jo Clarke, PhD., Director of Petros: Resilience for Life
• Jane Sherwin, author of “Pathological Demand Avoidance: My daughter is not naughty”
• Neville Starnes, PDA Society trustee and creator of the “bluemillicent” YouTube videos

There will also be workshops across the topics of family life, education and health which will provide further information and strategies in dealing with the practicalities of everyday life the PDA way. Throughout the day you will also be able to meet up with other parents and carers and browse a selection of stalls featuring information and other resources.

Early bird booking prices (before 14th June) are £50 per person, or £35 per person concession (individuals claiming JSA, Income Support or Employment and Support Allowance).

Please use the link below to read FAQs and ALSO TO BOOK!
Eventbrite bookings site

Thank you

I will be there. Hope to meet some of you there too.

N x

Observation without assumption

Sunday we had a visitor.

Ordinarily this would not be blog worthy material but, I mention it (mostly) because she has been such an important part of our journey (and instrumental in furthering my understanding of my children), and also because she is such an inspirational lady.

Her name is Felicity Evans. Yes, I have mentioned her before here in my blog-life, but she certainly deserves another mention today. Her visits are fleeting and far between due to the fact that she still works full-time at Nature Kids whilst also watching over some of those children who have long since left her care and can no longer even be called children!

I open the door to find her laden with bags (as always)! She has a plethora of outdoor toys (shuttle cocks, hula hoops, bats, balls, boomerangs and more), clothes for Harriet and healthy snacks for all (serving to remind me that I must do better in this regard). She never fails to delight us all upon her arrival. She seems to have an  instinct for what we all want/need and I marvel at her intuition.

A visit from Felicity is valuable for me on so many levels. She 'sees' my children for one! Such a revelation. She also never fails to notice just how intricately I manage my household (reminding me that true professionals make whatever it is they are doing look easy). She delights in mine and my children's idiosyncrasies and allows us all to be completely ourselves.

Let's flash to when she drew up for a moment in order to illustrate this better.

I want to paint a picture of what Dominik was doing, literally, as he watched her pull up in her car.

Background -

His little brother broke his television a couple of months ago so, I put a claim to our insurance company and was given the money to replace it. I did this and I 'upgraded' it while I was at it. It is much bigger and has much better picture quality than his old one did.

The picture quality is where the problem has arisen and Dominik is convinced he should have the new television because 'he cares more about the graphics' and his 'PS4 has the ability to make use of those better graphics and the PS3 doesn't'.

Both of these things are indeed true.

However, Dominik was offered a new television at Christmas which he turned down in favour of the PS4. Fair enough. End of discussion as far as I am concerned.

Fast forward to Sunday.

Dominik begins chasing Hannon around the house screaming and swearing at the top of his voice, that he is going to swap the television for his and that is that. We have already been over this dozens of times at this point and Dominik knows that I am NOT going to change my mind. For once, Hannon is going to have something brand new and excellent all for himself.

So, I open my front door as I run past it (baby in arms) trying to intercept Dominik and free Hannon before it turns violent. I scream "Come in!" as I pass. Dominik now has Hannon cornered in the kitchen where he is cowering under the table. Bugger.

I manage to put myself between them for long enough that Hannon can escape back upstairs to sanctuary.

Felicity has come in and as she enters the kitchen. I introduce her to Harriet. Meanwhile, Dominik is still swearing and shouting at me about the television.

I do my best to empathise and console him (this works most of the time) but to no avail. He drops to the floor and crawls under the table. I try to coax him out with promises of pineapple and strawberries and by encouraging him to smile at Harriet, but he is having none of it today. Oh well. I look at Felicity and she beckons me to leave him be, so I do.

We continue our 'Hello's' and within about 3 minutes Dominik has crawled out from under the table (perhps sensing that it is safe to do so?), with his hand covering his face declaring that he doesn't want to see anyone and just wants to be alone. We watch him go.

Felicity then quietly comments on how calmly I handled the situation and, more importantly, she points out how amazingly quickly and well Dominik handled the situation and was able to self-regulate and calm himself down.

She is right. In recent weeks Dominik has been far more capable of regulating himself on lots of levels (although not all as the incident in the woods evidenced). He no longer eats copious amounts of rubbish food, he steps away from the screen when he needs to, he comes out with us far more regularly (provided it is not too far in the car), he showers when he thinks he needs to (this isn't anywhere near as often as I think he needs to, but, well, it's a start) and he knows what actions to take when he feels himself losing control.

What an amazing achievement! Some people arrive at adulthood, with no special needs whatsoever and can't manage to do that.

Thank you Felicity for helping me consciously observe Dominik.

Thanks for reading and please, if you have any thoughts, please do share them in the comments or by email.

Take good care.

N x

PDA kicked my butt this week.

Pathological Demand Avoidance (PDA) has kicked our butts this week.

Dominik has been more challenging this week than he has been for a long while.

Every single request, from asking him to being me an empty juice cup, to encouraging him to come out to the woods for an afternoon with us (more on this below), has met with outright refusal.

He is entrenched in his gaming world and is not interested in leaving it for any reason. Unless of course you count going into town to buy another game! That he did with no problem whatsoever and it went really well, in fact, it was a lot of fun.

That is what grates more than anything else. The fact that when he wants to participate in life, things are great. If Dominik wants to be a part of our world he is a delight. He is the spoke at the centre of the wheel. He is the determining factor in every situation. You have to admire someone who can exert that amount of control, no matter what the reason.

But, let's not forget that even if he does really want to do something, the transitioning is always tough. Getting him dressed and into the car is invariably lengthy and anxiety provoking (for all of us, not just Dominik). More often than not, the little ones stay out his way lest he lose control of himself and lash out. He is impatient and nervous once out of the house and prior to reaching his destination. He is in full blown 'I must control everything mode' until we get where we are going. He will ban everyone from talking in the car. He will decide whether or not the radio is on and if it is, how loud it will be. He will choose if the windows or the sunroof are open and if so, how far open. He will choose if you can drink your drink, eat your snack, play on your tablet etc etc.

It is exhausting and this week, it really has been.

Nothing has really worked in terms of distraction/persuasion. Sigh. I have lots of tools in my kit for dealing with/helping/encouraging/supporting Dominik, but this week, none of them have been enough.

We went to the woods yesterday to meet with a delightful family. We have just begun forging a new friendship and my little ones really seem to like them all a lot. Excellent.

Well, Dominik tried his best to control the situation to the nth degree and this resulted in him hitting their son (leading to him having his own meltdown and disappearing into the woods for an hour causing all sorts of new problems).

Dominik had only come because he had bargained with me to sleep downstairs the previous night. He had asked to stay downstairs and said that he would come to the woods with us if he was allowed to. I agreed.

He dressed without issue and left the house with nothing more than the ordinary drama described above.

We arrived at the woods on time (yay) and Dominik immediately asked me if he could go home in a taxi. I said no and he asked if he could stay in the car. I said no. He began throwing pine cones and sticks around so I subtly manoeuvred the little ones out of the way and we investigated the nearby woods whilst we waited for our friends to arrive.

They arrived and Dominik made his feeling known straight away, no doubt making everyone feel awkward. He walked with the adults and let the little ones go and play. He seemed ok. He said he was hungry and thirsty (we had had lunch before we left the house) and that he was bored but he kept walking. Pretty successful so far all things considered.

We eventually caught sight of the little ones ones and Dominik went running over to join in with them. Excellent I thought.

And then disaster. Upon running into a copse of bushes and fallen trees to find their base, he tripped and fell, pushing over the other little boy and grazing his own arm and leg in the process. Disaster. Dominik was screaming, the other little boy was screaming and they were both blaming eachother for the mishap. The other little boy (being on the spectrum also) thought that Dominik had pushed him over on purpose and shouted at him. This upset Dominik even more as he was not only physically hurt, but his pride was damaged and now he was being accused of doing something that he did not do. This combination of events is trouble.

Dominik is now inconsolable and insists on walking back to the car to wait for us to finish our walk and for the little ones to finish playing their game.

The little ones keep playing and don't really seem to notice his absence. Even the little boy he tripped onto seems to have recovered. Phew I think, we just need to make our way back to the car and we'll get home.

We arrive back at the car and Dominik is sitting there on a bench looking perfectly calm and ready to leave.

He wasn't. He ran over to the other little boy and thumped him. No warning. No words. Just a thump. And then he said, "That's for saying I pushed you over on purpose."

He was hurt and aggrieved that he had been accused of something he didn't do and I should have known that he wouldn't ignore that. I missed the signs and someone not only got hurt, but it caused untold stress and danger to another family.

It was not a good trip. I still feel horribly guilty this morning (hence my need to 'confess' to you all here I guess).

Everything turned out all right in the end. No one was badly hurt and I have been reminded to be more vigilant and to just let Dominik sit in the car if that is what he wants to do and even if it seems wrong. I must be flexible because he can't be.

Next time will be better,

Thanks for reading.

N x

What I had lost.

The weather seems to be turning and that means lots more time out of the house and a good reason not to give in to my slightly OCD tendencies with regard to house work and tidiness. Bring on the fresh air!

I was warned repeatedly (by well-meaning friends) prior to Harriet being born, that life would be harder and more complicated once she was with us and that I had better 'lower my expectations' and get used to not being able to do things quite as easily as we once did (as if it was ever easy anyway I thought).

Well, I am pleased to report that life is not harder and more complicated at all. In fact, it is exactly the opposite. Harriet has brought with her a calm and peaceful rhythm which has permeated each and every one of us, neurotypical and autistic alike.

Over the past couple of weeks we have all been to the following places as a five-some and all the trips, whilst not being completely uneventful, have been a lot of fun and remarkably easy to manage.

KidsWorld (indoor soft play)
Ampthill Park (for a lovely picnic, during the Easter holidays)
LaserWorld (indoor team shooting game)
The American Diner
Roller-skating
Tennis

Once upon a time I would have been far too nervous to attempt these trips by myself, with my three high-maintenance children in such a short time frame, but since the birth of Harriet, I once again feel full of confidence and, well, joy, I guess.

I realise now that these qualities were leaving me.

As I struggled to maintain some semblance of 'normality' I was slowly losing my joy, and my confidence was long gone! (I think that left me when Dominik was born truth be told, and when everything I had read about being a parent was completely false, I felt depressed and demoralised). I'm not sure if I had, until now at least, ever fully recovered. I think I got used to feeling like a failure and as a result I lowered my expectations for myself and for my children.

I would not go so far as to say I was depressed, because I have been depressed in the past and these past ten years have not felt like that, but I have certainly been losing sight of myself and what really makes me happy.

I am pleased to say that Harriet's arrival has brought with it a renewed love for my life. Instead of lowering my expectations as I was continually advised to do, I should have in fact raised them.

I truly want to be the best that I can be. I want to show my children what is important when it comes to living a full life. Is it really a clean house? Wardrobes full of expensive clothes? Flashy cars? Knowing your times tables or being able to define a verb or the pluperfect tense? I don't think it is.

I think life is for living and for enjoying and that is exactly what we have all been doing with baby Harriet. She is a precious, precious gift for which I am immeasurably grateful.

Thanks for reading, as always.

N x

It's been four weeks! Time flies when there's a newborn in the house!

So, Harriet Amelia Mae arrived via scheduled c-section (at 39 weeks gestation), on February 20th 2015, at 10.12am weighing in at a super dinky, 6lb 14oz.

We are now four weeks into our new life as a five-some and I have to say, so far so good!

As some of you will remember, I was terrified at the prospect of a c-section, so, I went all Aspie-on-its-arse!

I researched the subject until I was satisfied (read; exhausted/blue in the face) that I had enough tools at my disposal to facilitate a speedy and effective recovery. I simply could not bear the thought of being out of action with my lot for up to six weeks (with no driving) with a new baby in the house too! No way Jose!

So, in case it is useful to anyone, here is what I learned about surgery, c-sections and effective recovery broken down into the various categories. I will try my best not to forget anything because I think I have made an almost miraculous recovery!

Homeopathy

• Arnica
• Aconite
• Bellis Perennis
• Staphisagria

Essential Oils

• Lavender
• Geranium
• Tea Tree Oil

Herbs

• Fenugreek
• Alfalfa

Supplements

• Papaya Enzyme Extract, 
• Serrapeptase
• L-Glutamine
• ProBiotics 
• Chlorella

Vitamins

• Vitamin C
• Iron
• Multivitamin

Meditation

Positive Affirmations

Medical Equipment

• Theraline C-Section Recovery Belt
• Girdle

Food/Nutrition

• Fibre rich
• High protein
• Whole grain
• Fresh
• Organic

Extras!

• Miso instant cup-a-soup
• Nuts, seeds, dried fruit
• Granola Bars
• Green & Black's chocolate
• Peppermint Tea
• Bach Peppermint Rescue Remedy Gum
• Senekot
• Ibuprofen
• Paracetamol
• Something to relieve wind but I can't remember what it was called!
• Placenta Capsules 

I hope that is useful to someone! And as always, please don't hesitate to get in touch if you have any questions.

Here is a picture of my beautiful baby girl at four weeks old. Please excuse her blue mouth...I have been treating her oral thrush with gentian violet 1% and it turns everything bluish/purple!

Thanks for reading, as always,

N x

It's been crazy...

Hi world,

I'm sorry I've been away so long. It wasn't my intention but it has been my reality.

So, my big kids are all fine. Great news.

Life is going so smoothly with them it's a little unsettling to be honest.

Dominik, 10, has discovered a love of cooking and has been cooking us egg fried rice and stir fry, making exotic sandwiches and French toast and generally getting to grips with the kitchen and its pleasures.

Oh, and we made Groot biscuits complete with their dirt pot chocolate muffins and, as per Dominik's request, we made sushi cakes too. Now they were a feat! We decided to try and make marshmallow fondant...never again! It was the most arm-work (and mess) ever and I wasn't even that impressed with the taste to be honest. Next time we will use fondant icing for sure! However, they did go down a storm and looked great in the end.

Hannon, 8 next month, has had his birthday present early. A full on beast of a computer! He has been learning all about bookmarking, downloading, installing, updating, virus scanning and has generally increased his reading ability by about another year I think.

It has been tiring though, I won't lie. I am having to constantly look over his shoulder to ensure he really is learning what to do and what not to do and he does need coaching with his spelling as he is far less confident with that than the reading. At the moment the computer is set up in our kitchen so it does feel rather like we are living on top of each other which is not normal in our house, as we all tend to do our own thing most of the time. Sigh. It will be worth it in the end!

Lily, 6, has been trying to read and write with such determination I am in awe of her! She is using some very simple 'My Little Pony' phonics books and she is typing to her friends on the PS3 whilst playing 'Little Big Planet'. She is naturally inclined to write everything phonetically with no spaces but it is amazing to witness.

Yesterday she wrote me a note which said, "How many more days until Harriet is here (the baby in my tummy who will be arriving by c-section tomorrow)?" and she wrote it like this: "hawmenymodazintilHarrietishere". Isn't that fabulous? Her oldest brother was highly unimpressed (no shock there) but I was thrilled. Her basic understanding, her desire to learn, her desire to do it for herself and her ability to communicate are wonderful.

It is a lovely reminder that yes, children do want and love to learn and are perfectly capable of finding their own way to move forward if simply encouraged and left alone. All I have done is write out what she has written correctly underneath her message and she is massively impressed with herself, which is all that matters. Her little face when I read her message back to her was precious.

So, me, well, I've been distracted! Hmmm, biggest understatement of the year right there! Having given birth four times (one angel baby boy still born at 27 weeks in 2006), all naturally and twice completely unassisted at home in two foreign countries, the prospect of surgery is a daunting one.

The reason for the c-section tomorrow is because after Lily was born in 2008, I developed a haematoma, which led to a recto-vaginal fistula.

The fistula was successfully repaired on the first attempt (incredibly rare), three weeks post-partum in Peru and I have thankfully never had any other symptoms.

I have been consulting with colo-rectal surgeons throughout this pregnancy and their advice has been to have a c-section to ensure that the fistula does not recur, (or perhaps even cause a fourth degree tear where the scar tissue is and possibly lead to the long term consequence of needing a colostomy bag and repeated surgeries). Any further surgeries after the first one are significantly less likely to be successful and I have been very lucky so far.

I have weighed all  my options thoroughly and the bottom line is, that I am simply too frightened to risk a vaginal delivery. Sigh.

The chances are all would be well but the risk is too great for me. I am a single mum with high needs children and I simply do not have a large enough circle of support to risk needing to be in and out of hospital for an unforeseen length of time. That's not even considering the psychological damage it could do to me which I know I do not have the energy to deal with.

So, I am facing my worst fear. Elective surgery. Tomorrow. Wow!

I guess some great things have come from this experience though. The children and I have had lots of time to talk about babies (from conception to birth) and we have watched countless YouTube videos of natural births and c-sections (the kids by far preferring the c-section over the natural route...far less messy)! We have also discussed our fears, talked about the changes that will occur once baby Harriet is here and worked out together who they would like to look after them in my place whilst I am in hospital.

This will be the first time I have been away from them all over night since 2013 and I can count the number of nights I have ever spent away from them on less than two hands. Yes, for me, this is a big deal. Breathe.

Today I am going to savour every baby wriggle and squirm, every big kid cuddle, and every moment of it just being the four of us for one more day.

Bring on the life change! See you all on the flip-side.

N x

Another Year Begins.

Happy New Year to you all.

Christmas and New Year seem to have passed almost unnoticed for us this time around.

Other years have been fraught with 'ought to's, musts and should really's' but this year was so very different that the drama simply vanished.

I dare to even say it was close to being completely drama free.

We only attempted one outing over the Christmas period to a very dear friends house on Boxing Day and it went so well that I might even be brave enough to attempt a few more in the near future!

The Boxing Day trip was the first time Dominik has been to visit anyone at home since May 2014.

He finds visiting other people's homes very stressful because it firstly involves a trip in the car (sensory nightmare) and then the uncertainty of what there will be to do when he gets there, who will be there, what he will be allowed to eat, how long we have to stay and what will be expected of him. I try my best to prepare him but when you visit the homes of people with no real idea of what having a child with special needs entails, it is rather difficult to adequately prepare.

In this instance, we arrived to find that they were having a second Christmas Day...sigh. This meant the house was full of nieces and nephews, grandparents and extended family, none of whom we knew well...all exchanging gifts. This was unexpected as we were told it was simply a Boxing Day BBQ.

When we arrived to a room full of people and the first comments we received were about my children's clothes (Dominik in his slippers (no socks), Lily in a summer dress (no jumper)) that did not bode well! However, I took the time to explain that they both had sensory processing difficulties so that no, I would not force them to wear clothes that made them feel even more unhappy and uncomfortable than they already did, and things moved on swiftly.

The next hurdle was the abundance of food...which couldn't be touched as not everyone had arrived yet. My guys are not used to this kind of arrangement as usually, people are visiting us and it is our rules. They did however manage to leave the food alone until it was time. Success!

Then the present opening began. Now, all of you with children will understand how hard it is for a child to sit back and watch presents being opened when they themselves have none...and those with special needs children will realise that this is especially difficult for Dominik for has a strong need to be in complete control of his environment at all times. The lack of control during the opening of presents must feel horrendous for him. But, he did it. he managed to pretty much sit still and out of the way whilst the other children ripped open their gifts and gushed with joy! Success!

After we had eaten, Hannon fell asleep on the sofa (never happened before and I doubt it will ever happen again) and Dominik and Lily played happily with the other children (and chatted away to the adults) until it was time to leave. We stayed for a little over two and half hours and everyone was well fed and had a lovely time. I even received a compliment or two about how my children behaved. Success!

New Year 's Eve was also a great success. It seems that we are cultivating our own traditions for this special night. When I was a child, my parents would let me stay up and have a glass of Bailey's and then they would let me open the back door whilst they opened the front to let the old year out and the new year in.

Well, we have a Chinese takeaway, choose a movie from the year that we would all like to watch again (this year it was 'How To Train Your Dragon 2') and then we each write out a list of wishes (not really confined to resolutions although there are some in there), which we then burn and send off into the universe to manifest! It's becoming a truly special night for us and I can't imagine wanting to spend it any other way any time soon.

And now the New Year is here!

My first job in the New Year is usually to answer a letter from the Bedford Borough Elective Home Education Officer about the previous year's learning. I haven't received the letter yet but I am expecting it early next week.

This will take up a considerable amount of my time for the coming weeks as I do enjoy looking back on all my diaries and calendars and photo's and resources and books, and cataloguing how much things have changed and how far we have all come in what it is really, a very short time. It is a lovely way to remind us all just how much we love our little home school life and just how much we can achieve together.

I will of course share my reports with you all just in case you should be interested

In the meantime, I hope your New Year has gotten off the a great start too.

Here are a few Christmas snaps to wrap up the season.

N x

My Christmas Present...

After resigning myself to getting no presents this year, my 10 year old, Dominik, (who has loads of letters after his name: PDA, ASD, SPD, CAPD etc etc) brought this in to me after working on it for an hour.

Toothless, of 'How To Train Your Dragon' fame, is my favourite fictional dragon.

Now, aside from the birth of my daughter in 2008, on Christmas Eve, and my recently received Decree Absolute (yay), this is my best present EVER, EVER, EVER. Just the fact that he put his time and energy into something so thoughtful and beautiful just for me is enough to keep me smiling well into the new year.

Dominik has recently discovered his passion for drawing and sketching and has expressed a desire to be a graphic designer some day...I think he may be on to something.

Merry Christmas. I hope you all get something just as special as I have.

N x

Misunderstanding and Prejudice.

As a mum of extra-ordinary, special needs children, it is increasingly difficult for me to read countless stories on a daily basis about the amount of misunderstanding and prejudice that is out there in the world of 'professionals'

Everyday I am corresponding with mothers (and some fathers) who are at the end of their tether (and sanity in some cases) when it comes to trying to communicate the needs of their children with those who are meant to be helping them.

There is a stunning lack of empathy and understanding amongst professionals when it comes to supporting a child's sensory, emotional and physical needs. This is particularly evident in the educational establishment, not to mention the paediatric setting and don't even get me started on Social Services.

Let me preface my criticism with this thought - of course there are some amazing professionals out there in the country (and world) but unfortunately they are few and far between. Couple this lack of professional understanding with a parents lack of medical vocabulary, and it can get very adversarial very quickly with the parent often being blamed for their child's needs.

The parents I am corresponding with are telling me that those charged with the safety, education and well-being of their children are simply not listening to them.

They are almost unanimous in their cries of, "They think I'm a bad parent." "They say I lack the skills to the manage my child effectively." "They think he/she is just naughty/attention seeking/dramatic/uncooperative." And the list goes on and is exacerbated by a further lack of adequate diagnosis from the paediatric teams. This is particularly true in the case of Pathological Demand Avoidance which is not in the manual and is therefore 'not even a real condition' but simply a parents excuse for poor behaviour. As a side note, not all parts of the country refuse to diagnose PDA making it even harder for parents to figure out where to turn.

Parents often face the above charges without the professional having spent much more than a few hours with their child and even when parents present video evidence, behaviour diaries and testimony from others who care for their child they are still ignored. How can this be?

The professional literature would have us believe that WE are the experts on our children (and of course, we are) and yet in reality, we are ridiculed, belittled and patronised and, more often than not, sent on parenting courses which, in my opinion, is the worst insult of all, especially if you are the parent of more than one child and the others are 'conforming' and 'behaving well' with no obvious difficulties. Surely this alone indicates that it is not the fault of the parent?

My son has Sensory Processing Disorder (a condition commonly diagnosed alongside an ASD) and he often needs deep pressure, movement breaks, quiet time, something to chew or fiddle with and more sensory feedback from his environment (a sensory diet). He can react violently to loud noises, bright lights, too many people and strong smells. As his mum, I know what might cause extreme reactions and I am able to monitor and control his environment when necessary to avoid the sensory overload. I know when he needs his ear-defenders or his chewing gum or even a great big squeeze!

I don't think these adaptations are unreasonable if it allows him to regulate himself and participate in 'normal' activities! They are a necessary part of his 'therapy' and have a huge impact on his behaviour. I think they should be respected, just as you would allow a diabetic to take their insulin, or a wheelchair user to be able to use a lift. Just because they are not visible, it does not mean they are not real.

Now, why can't the professionals accept and meet these needs too? If my son were at school, I would send him armed with a list of strategies and techniques to give to the professionals in order to help them understand and support him. I would give them a very long tip sheet about PDA and how best to get him on board with any given task so that he stands the best chance of being able to comply and enjoy what he is doing. What parent wouldn't?

However, the chances are, my carefully though-out tip sheet and long list of successful strategies would be ignored/forgotten in amongst the mass of other tasks that teachers/TA's have to do in a day.

Fair enough, I guess. They do have a lot to do (and lots of other needs to take into account) but, if they do not utilise our suggestions, surely the resulting punishment of our children is discrimination? They are inevitably punishing our children for their disability! How can this ever be acceptable?

I read about illegal exclusions and draconian punishments DAILY which are a direct result of teachers and TA's being unable to meet the needs of our very special children. I admit, these needs are high, but the professionals have a duty of care, and they accept that duty of care and when they fail to meet the standard of care our children deserve, what are the consequences?

The consequences are disastrous. Not only for the teachers, TA's and other children affected during the school day, but also for the child in question and just as importantly, for the child's family when the school day ends.

When that child goes home they will need to release all that tension, frustration, upset and sensory overload somehow. They will more often than not, explode through the door at home and unleash a storm of fury and pent up anger all over their loved ones.

And here enters another 'professional' who, when told about this set of behaviours, instantly thinks that there must therefore be a problem at home! How ludicrous! How uninformed! How insulting!

No, Mr or Mrs Professional, this does not mean there must be a problem at home. On the contrary in fact, it means that home is where this child feels safe enough to let it all 'hang out'. This is where they can release and be themselves without fear of punishment, ridicule or reprisal for their behaviour.

Home is where all of the unmet needs of the day manifest into behaviours which communicate just how badly that child has been failed by their care-givers during their day.

Parents have to deal with the fall out of a failing system only to be told that their parenting is at fault! That their child's behaviour is a result of their lack of boundaries and training on their part.

Sigh.

It is such a soul destroying situation for these parents. Not only is their child being failed, but now they are being blamed for that failure.

How can we begin to address this issue? 

Well, I think, knowledge, knowledge and more knowledge is the only realistic and long-term answer.

Gathering this knowledge from caring, empathetic professionals (Jude Seaward and Felicity Evans to name two I know of), other parents, adults with special needs (who have long since left behind their school days) and of course, listening to our children, is the best way forward.

Places like The Avenue, and volunteers like Joanne, Elaine and Sarah, who are dedicated to expanding the knowledge of parents and carers, is the future.

It is groups like The Avenue that will make the difference to our children by empowering parents and informing professionals.

It is only when parents are given the confidence and appropriate vocabulary that they will be able to effectively advocate for the rights of their special children.

So, please, please, please, spread the word.

Share your experiences.
Share your knowledge.
Share your thoughts and feelings.
Share with anyone who will listen.

Do not be embarrassed (or shy) about disagreeing with a 'professional'.
Do not be intimidated by their qualifications.
Do not let them claim that they know better than you if what they are saying goes against your instincts and ignores your knowledge of your child.

Trust yourself. Get informed. Ask questions.

Be the best advocate you can be.

N x

Controversial (or not) Christmas ideas. First published 2014.

I thought I would write a few words about Christmas and how it's going for us this year (and it is an excuse to post a picture of my tree which is, honestly, the best bit for me)!

So, for those of you with little ones who are at school, I imagine this time of year must be particularly challenging not least because of the following;

• Mufti-days
• Carol Services
• Timetable changes
• Nativity Plays
• Decorations
• Staff absence 

to  name but a few of the school based changes. 

But what about if we include;

• School holidays
• Visiting relatives
• Christmas Trees and decorations
• Furniture being relocated
• Presents (and the accompanying anxiety)
• All predictability vanished
• Extra people everywhere

And perhaps even;

• Parties
• Father Christmas himself
• Family events
• Photo ops
• Different foods
• Different clothes
• An abundance of chocolate/sweets and treats everywhere
• Anxiety at its maximum surrounding the idea of being 'good/well behaved/deserving'

This is perhaps the most challenging time of year for us families with children (and adults) on the Autistic Spectrum so I thought I would share with you a few of my ideas designed to make life a little less stressful.

It is my hope that they will help things to  run more smoothly (and joyously), in your home too during this Christmas Season.

Preparation, Preparation, Preparation.

This cannot be said enough! Prepare to the nth degree!

Let your child create their own special visual timetable (in the form of an advent calendar maybe) so that they can anticipate all the events at school and at home. Let them talk to you about everything that they remember about the changes and how that makes them feel and what they feel they can and cannot cope with.

Enable them to choose, to as large an extent as possible, what they want to participate in and what they don't in the school calendar and respect their wishes. Be the best advocate for child that you can be and ensure that they get the Christmas they want too. Struggling is not a nice way to live at any time but at Christmas, when everyone else is smiling and happy, it must be even worse.

Bribery & Coercion

I think it is all too common that parents begin using Santa (and presents) as a 'carrot/stick' once Christmastime comes around. Children all over the Western world are worrying themselves half to death about their behaviour and whether or not they have been 'good' enough to deserve presents.

It is my firm belief that children will do well if given the environment in which they can do well.

Our special children are already doing their best all the time to manage without breaking down, so at Christmas, when there is so much more at stake, perhaps we should avoid pairing their behaviour with the promise of presents?

A lady told my daughter only the other day that if she 'screamed like that' Santa would hear her and she wouldn't get any presents. Not only was this extremely distressing for my daughter but it was horrible for me too! I do not use this kind of carrot and stick system in my house as a rule (I'm not perfect) and I have to say that to hear it come from a complete stranger was horrifying.

My daughter had been having a difficult (and busy) day and she was getting to the end of her ability to cope (several different shops, in and out of the car, hungry and over-stimulated) and this lady simply made things 100% worse. Sigh.

So, yes, try your hardest to not equate their behaviour with good/bad....they are trying their best.

Shopping/Trips

Please, please, please, unless you have absolutely no choice (or alternatively, they want to come along), let them stay at home! The world is a crappy place for those of us who shun noise, smells, lights, people, being touched and garishness right now! Unless your little one wants to plan a trip (and gets complete autonomy over what happens on that trip, including when to call it quits), don't make them come along.

Visitors

Keep the number of visiting friends and relations to an minimum, or, at the very least, let your child hide out in their room (or in the room that is most comfortable for them) and do not force them to socialise if they don't want to.

As an Aspie adult I can tell you, being made to kiss, hug and chat to people who are basically a load of strangers, is traumatic and exhausting and certainly not 'fun'!

Please be an advocate for your child and warn any visitors, that if they are bringing presents, to expect them to be unwrapped on sight if they are seen by said children! If they do not wish for this to happen then should wait for the opportunity to 'sneak' them in unseen when they can be safely hidden and not add to the anticipation that our children are already feeling with regard to unopened presents.

Also, tell these same visitors what treats/sweets/foods are acceptable in advance so you don't have repeated meltdowns over food.

If you can, decline any invitations that are non-essential. Visiting lots of different homes is stress-inducing due to the amount of unpredictability.

If you do over-do it our little ones will soon unravel and will not have a chance to regroup and recover, and will therefore end up not enjoying the best bits that Christmas has to offer.

Decorating

Allow your child/children to take whatever role they wish in decorating the house and tree (or not). If they are anxious about decorations perhaps put them up as late as you can in family areas and allow any other children to decorate their rooms so that they don't miss out.


I guess you may be curious as to how things are going with my brood in the run up to Christmas this year...well, let me tell you!

• I let them choose when to put up the tree and allowed them to dress it with me (spiking my OCD to the max let me tell you!).
• They are able to make a Christmas List the whole year through and add to it and take things away from it right up until December 1st ,when their lists are officially 'closed'. This is the same every year and it seems to work well and helps to avoid any anxiety associated with 'choosing' and being 'rushed' into decisions. (They also know that once December 1st arrives, there are no more 'incidental' treats as all my 'spare' money goes towards making Christmas awesome).
•  This year, once Dominik had decided what he wanted, I went and bought it for him straight away and gave it to him. He knows he will only have stocking gifts on Christmas Day now (and any presents that people have managed to sneak past him) and this has enabled Dominik to focus on everyday...the here and now...and not on the 'what might or might not be coming' in x number of days. It is the anticipation for him that is the hardest part of present receiving occasions, particularly Christmas, with the Advent Calendar, people constantly asking about his list, people coming to drop off presents and being offended when he wants to open them in the instant he sees them, and of course, people reminding him to be 'good'. So, as much as I get lots of 'tutting' and 'sighing' from friends and relations, I don't care. He is not spoilt. He is happy and calm. This makes for a happier and calmer time for us all but especially for him. Phew. 

I have implemented all of what I have listed above and, touch wood, so far, this has been by far and away the most amazing build up to Christmas there has ever been in my house.

It is a magical time of year so here's hoping it is for all of your families too.

Merry Christmas!

N x

Kids have so much to teach us.

This past week has been full of ups and downs.

There have been a few tense, trying moments (from my personal point of view, probably not the kids) and there have been a couple of days where I only wanted to go back to bed and start over. Sigh.

However, amongst the detritus, there have been a few stunning revelations. Yay!

My 10 year old son (ASD (PDA), Dyspraxia, SPD, CAPD, Misophonia, ADHD) showed me something that blew my mind!

I understand that technology is moving fast. I know that something becomes outdated within a matter of weeks. But this was other-worldly for me.

He showed me a video of Hatsune Miku (live) from 2013.

My first response, was along these lines, "Why, oh why, would people spend all that money to go and watch a hologram?! It's not even real".

And my response was countered by Dominik carefully, and knowledgeably explaining to me how this character (Vocaloid) was created.

Her voice is an entirely digital creation (as is she). She is entirely fictional. A 3D, singing, dancing fictional character on a stage, with an audience. (With a massive fanbase too that created a backstory and persona for her).

In the YouTube comments section, the top comment, by Kaito S, said this:

"For people that doesn't understand why other people would actually pay to see hologram singing and dancing, please let me enlighten you. But this might be a little long so I hope you bear with me :D

(I'd appreciate it if you would upvote this so this will remain at top of the comments for any newcomer to read.)

First off this is Vocaloid's concert, and Vocaloid long story short is a program with voice database inside where you can make songs by putting lyrics and melodies into it. Of course it is incredibly complicated as it has many parameters (like velocity, dynamics, breathiness, clearness, opening, gender factor, portamento timing, pitch end and ect) so its not as simple and easy as you think,

Anyone can practically buy a Vocaloid and make their own songs or cover songs. Users of Vocaloids can directly contribute by compose songs for any vocaloids, and by now (year 2014) the number of Vocaloid songs alone reach up to HUNDREDS OF THOUSAND, and yes I'm not kidding nor do I exaggerating things. Thier creativity doesn't come from a single mind like every other "real" artist, but rather is a collectives from their fans. That's why as long as their community is alive, Vocaloids will be alive as well. I'm even confident that Vocaloids such as Miku will keep going even after 50, or 100, or 200 years from now as she and any other Vocaloids are not shackled by reality. By now you should get my point that by being "not real" is their strongest weapon.

You might argue that their voice is terrible and you don't like it, well I have something to tell you: remember that Voclaoids are just a PROGRAM. So if you hate their voice its their "settings" or "parameters" that you actually hate. You will realise this if you listen enough number of their songs. Even though they are sung by Vocaloids, they sound uniquely different individually. This because each song has different composer, and each composer has their own unique parameter setting. So my point is don't hate Vocaloids, but hate the composer, like you don't hate guitar in general just because there is a guitarist you hate. Given enough effort and luck, you will surely find your favorite composer through out thousands out there :)

So the "thing" you see on that stage is not just a hologram, but a personification of creativeness coming from hundred of thousand of Vocaloid fans (And I should add that actually their fans count up to millions world wide). In a sense it really is a concert from Crypton Vocaloid fans, to their fans, and by their fans. Thats why they are not there simply to see the marveloussness of hologram technology like you think, Its more than that.

I would also like to add that if you search on Google: "Why Hatsune Miku popular" you would find an article from LA Times Magazines. It will give you more detailed and unbiased information around Hatsune Miku than me.

Lastly, whether you agree or disagree with me, please leave me a comment. I'd love to chat with fellow vocaloid fans and make any newcomer (or probably hater) to see vocaloid the same way as I do :)

P.S.: Damn, this is longer than I thought would be :P

-Written by +Clemens Cave 

-Edited by +Ratio Kun 

Ratio Kun / Kaito S Speaking here

Also if you are new to the Vocaloid I will welcome you, please tell me what you like otdislike about the concert or the Vocaloids in the comments, I would like to hear your opinions.

I will make a new post relating to more about the actual Vocaloids and some examples of their voices."

Dominik went on to show me more examples and enquire about the software used, whether his laptop could run the programme, how he would create the character to go with one of his own Vocaloids and generally how much he'd like to play around with it. Wow.

Who can ask for more than this? 

Genuine interest. 

Genuine learning. 

Genuine enthusiasm. 

A genuine desire to explore and expand his world (and ours I guess).

Who would have known a 10 year old could be this inspired? Especially a 10 year old, who, had he gone into traditional education, would have been classed as 'unteachable', 'disruptive', 'disengaged', 'distracted', 'disobedient' (hmmm..lots of 'dis' words in there) etc.

It turns out that he is none of those things. He is everything I, as his teacher, could wish for. 

So, yes, that's one thing down!

The second thing I learnt this week was from my middle son, Hannon, 7 years old. 

He taught me that birds and butterflies actually move as one (learned from 'Wild Kratts')...like the water in a wave, rather than as individuals in a group. Amazing and perhaps more than a little insightful. 

We had this discussion whilst driving back from Ampthill Park after we'd had a trek through the muddy woods and sat in the cafe watching the camera that is fixed on the bird-feeder.  

The camera was fun too actually!

It reminded Hannon instantly of 'Five Nights At Freddy's' (an horror themed Indy game which is essentially a complex puzzle game), and he began playing a game with Lily where they performed 'Five Nights At Freddy's in real life. The funny thing was, we had face-painted before we left the house and Hannon was the 'marionette' from the 2nd game, and Lily was Chica, one of the animatronics. Perfect.

Also this week, Dominik has begun making the family bread, Lily has decided she loves to bake, bump is growing fast now (and I'm getting more tired) and Hannon is now a maze genius after completing this book!

Here are some pictures.

Thanks for reading.

N x