Wednesday, 9 December 2015

Christmastime!

Just wanted to drop a quick note to you all to wish you a peaceful and love filled Christmas.

This year the build up in our house has been unusual to say the least.

I opened their lists as usual, after Halloween, and closed them at the beginning of December. I had one request from Hannon and that was it!

It seems that this year, my kids achieved the ultimate goal of being satisfied with what they already have.

If someone had ever even suggested to me that my children would have empty Christmas lists I would never have believed them. But, this year, they did and it has made me very happy.

Domink, who usually struggles to hold it together at all at this time of year is positively chipper! He tried ice-skating this week (!!!), has been fully participating in his parkour classes and even having an extra half an hour, one-to-one tuition every week (and loving it)! He has been exercising AT HOME DAILY!!! (Those of you who have less than athletic children will understand the enormity of that one thing alone!) He is not fighting it. He has not refused to do them once in over a week! He is even beginning to notice his appearance changing as he slims down, livens up and feels more positive about his self-image for the first time since he was a small boy.

He has only asked one question about what Christmas presents he is going to get and I answered it. He has yet to ask any more. This is bordering on the twilight zone right now!! He hasn't even been opening his Advent Calendar!! Incredible.

I had no idea that this was possible for Dominik. To see him happy, content, cheerfully optimistic, participating and enjoying life is the greatest feeling ever!

Although, one other thing does come close! Some of you may remember that last year he drew me a Toothless (from 'How to Train Your Dragon'), well, this year, he bought me one!!! He didn't even make me wait until Christmas to have it!! He bought it for me with his own money and at his own suggestion. What a feeling this is.

So, I guess I just wanted to say that working with your children, allowing them their space and thinking time, really can elicit great changes. I have truly practiced gentle parenting this year with great success. Harriet I think has been largely responsible for that blessing. And, as a result, my son (in particular and only highlighted because of this particular blog post) is growing into a delightful young man. He is always searching for ways to better manage himself and identify his own needs and he more often than not, does the right thing what given the chance to do so. What a little star.

Merry Christmas & Happy New Year everyone.

On to 2016!

N x

Wednesday, 11 November 2015

Ups and Downs.

As is becoming my way, I wrote this in response to a message from a friend and it sums up where we are at nicely.

So, I honestly cannot think of anything that we have been doing in particular that is noteworthy but I do know that I am utterly EXHAUSTED!
Half-term turned out to be quite busy I guess with a couple of trips to woods (mushroom hunting and tracking and then making wands and pixie dust), some shopping with mum for my birthday (Fly boots rock!) and then some friends visiting here and there (one day I had 8 children in the house...arghhhhh!).
I guess I am doing ok but I am still a little lonely. It sucks not having anyone to pick up the slack when I'm tired or stressed out. At the end of a bad day what I would not give to have someone to chat to about what happened. What I would not give to have someone bring me a coffee in the morning, just sometimes. I do begin to go a little crazy inside my own mind some days.
This especially applies after Dominik or Lily meltdown and I've used up all my energy (which is usually at a pretty high level!) sorting them out and then there are still Harriet and Hannon to support in the aftermath.
Yesterday in particular was bad. Dominik has been having serious trouble sleeping again (we're talking between 4 and 6 am to fall asleep) so yesterday, when we had to get to parkour for 1pm, he was shattered and not in any fit state to get through it. I was dreading it before we got out of the door as he insisted on wearing his new trainers despite not having even worn them in the house yet! Yup, setting himself up for the inevitable fall.
He had the most massive public meltdown he has had in a very long time (so long in fact that I can't recall the last time) and it was spectacular. 
Swearing, kicking, shouting, punching and crying all at the top of his very loud voice in a very small gym.
It was all because he could not agree with the other children where his place in the line was and then, because they all disagreed with him, he felt that they were bullying him. It was heartbreaking trying to explain to him that it wasn't bullying and that it really wasn't that important. But, as those of you with Autistic children already know, this is a fruitless endeavour because it was not as he needed it to be in order to manage.
They all said his spot was somewhere different (because he had left the line to speak to me and change his shoes) to where he had begun and he just could not manage at all with that yesterday. This has never happened before and Dominik has been going to parkour since September so that is an indicator of just how bad he was feeling. It has highlighted to me just how massive his needs are when we are not in 'optimum state'. It has also been kind of a 'blessing' as I have the dreaded DLA paperwork sat in my kitchen waiting to be completed. Sigh. What a soul destroying job that is.
On to Lily then. She is pretty dire too right now. She is having trouble sleeping also. Not quite as bad as Dominik, but about 2 am. She is grumpy, argumentative and easily stressed most of the time if things are not kept calm, predictable and as she likes them to be. This is perhaps even more tiring than Domink if I'm honest. She will not be rushed, she will not be told what to do and she will not participate in anything aside from riding lessons.
I think before Harriet arrived this was fine because when they were up all night, I would be too! We would do all the things we would usually do during the day, at night instead so I felt ok about everything.
But now, obviously, Harriet gets up at around 7 am and I need to be up then too. I have to get to sleep before midnight or I cannot function at all and I start becoming more Aspie by the day and meltdown left right and centre over things that are just not that important (like a crumb on the worktop or a shoe on the floor) . This does not happen when I am doing well! Having the two of them going through a rough patch at the same time is pushing me to my very limit that is for sure.
Hannon however is AMAZING (thank goodness). He is excelling at parkour. Loving his running machine. Utterly focussed on becoming strong, fit and healthy. He is still programming his games with aplomb. He is now learning how to do some video editing and working on improving his spelling, grammar and punctuation (although he doesn't know that!) through his video uploading and responding to peoples comments.
Harriet too is AMAZING! She is above the 75%ile and growing beautifully. She is cruising, landing on her bum, kneeling up, clapping, waving, blowing kisses, almost standing alone and generally enjoying her new found communication skills. She is happy and content, loves being read to and enjoys playing with her big brothers and sister more than me! She also loves to eat although still prefers the breast!
I have just taught myself some basic crochet skills so have made Harriet some leggings and am making her a matching bonnet now. Feeling proud of that!


So, there you have it! Not a bed of roses but still ticking along.

On a final note, I am going to be doing some informal chats at The Avenue support group next week which is from 12.30-2.30 pm on Tuesday, November 17th at The Pentecostal Church, Crab Lane, Biggleswade, Beds, SG18 0LN. If you would like to come along and have a chat please book by sending an email to - theavenuesupport@outlook.com


Thanks for reading,

N x

Sunday, 18 October 2015

Building the New.


This encapsulates my life philosophy. I genuinely believe that my efforts are best placed in creating new 'stuff'. Be it thoughts, people, ideas, relationships, habits etc etc. I have never described myself as creative, but it turns out that I am! I only want to create new 'systems'. It thrills me. I think that is why the complex and completely meaningful relationships in my house fascinate me so much.

Anyway, during a conversation about school choices, I had these thoughts and things to say about what is going with us 5 at the moment.

Here is what I wrote. I wrote this to a friend, before I decided it would be a blog post so it is as honest as it gets!

Enjoy!

"Hey, So, which one did they choose? I'm dying to know! I used to work in all of them many moons ago.

They made a really big decision and it sounds like they have been empowered by the experience. It reminds me of me! When I was that age I had the choice of going to Bedford Academy (John Bunyan as it was) or Dame Alice (now merged with Bedford Modern but still a private school). I chose Dame Alice because even thought there was an exam and I would be going completely alone, it was still a safer, more predictable, more academic choice.

If I had gone to John Bunyan with my 'friends' I cannot even begin to imagine the different route my life would have taken.

It still wasn't easy and there were still mornings when my mum would have to sit in the car with me outside school and wait for me to stop crying and calm down enough to actually go in! But, go in I did, most of the time.

I switched again for my 'A' Levels to go to Sharnbrook. Now that transition was far from easy. I was back among all the kind of people who bullied me in my middle school!

{I edited out two paragraphs for privacy.}
We seem to be pretty busy. I'm not coping well with it but we are doing it! We have never had so many organised activities (4 per week) and trying to fit in 'quality' time is more difficult because I have so much more to do. Trying to get them all to comply and enjoy is hard going!

Dominik has a wobble every week at parkour. He has a meltdown within the first hour every week guaranteed. It is heartbreaking but he hasn't given up yet and is just beginning to see an improvement so I honeslty hope he decides to keep it up after half term. Feels like a test!

Hannon is coding his own video games which improve by the day! It is incredible to watch and he surpassed what I had learned in less than 24 hours!! He has taken to it like a duck to water. He has about 5 different pieces of game making software on his pc but this is the first one that has really worked for his learning style. So, after about 4 months of trial and error (and money!) he has finally found his niche...and it was free! lol [ETA - He is even drawing all of his own pictures which is a first as he doesn't even voluntarily write with a pencil. Whilst the rest are drawing, he has always resolutely refused. Until now! He is experimenting with drawing on the computer and even 3D drawing like he never could in real life. I think he has overcome a big fear in doing this. He even said he thinks he might start trying with a pencil in the future. I am so proud of him taking charge of what works for him. Lily has even let him borrow her graphics tablet in case he wants to try with a pen.]

Lily is reading like a pro! She is just flying through it now and she is even asking to learn Spanish! We wrote down all the ways I could think of to say 'I love you' in different languages last night. It was great fun, 

Although, to coincide with Lily's rapid developmental spurt, we have also had a complete regression to the aggression and violence.

I have come to accept that it is the price we pay for big leaps. It puts a lot of stress on her system and she falls apart a little at the seams. We're all doing our best to support her..well, except Hannon who mostly wants to torment her a little more. Grrr.

And Harriet! She is awesome. Teeth 9 and 10 on their way. Crawling brilliantly (although more of a drag than a crawl...think legless zombie!) and she has just started cruising the furniture! I had forgotten how scary this bit is but she is doing marvellously and takes the odd tumble with grace and humour! She can almost stand unaided and she is learning fast how to fall onto her bum! She is also loving any food you give her to try. Thanks goodness! I do not have time to cook yet another meal! She loves being wrapped and even tolerates my failures and re-wrappings with fun (that is, if you call having your ears bitten at all 'fun').

Me, well, I'm exhausted and was on the edge for a few days. My mum stepped in and gave me an afternoon last week which was my first one since Harriet was born. That is 8 months! So, well, it was great and I am ok now.

Well, now I've bored you with an essay (sorry) I'm going to blog it in an adapted form if that is ok with you? I won't mention you by name but I will say how the blog came about.

PS - Thanks for asking how we are. You'd be amazed how few people actually do and I sometimes forget that great things are going on here, even when I am too exhausted to fully appreciate it all. Being able to write it down really helps.

Big hugs xxxxx" So, there you have it. That's a short summary of how we are all building and creating in my house! Sorry I haven't blogged sooner. It's been a bit busy! I'm glad a friend helped me to make the time to blog today.

N x PS - I did my hair!



Saturday, 5 September 2015

A kind of 'Unschool'?

So, I've been thinking a lot about school as I am surrounded by reminders of it right now.

What if there was a kind of school where it was no longer necessary to use our chosen 'labels'? We define and categorise all children in one way or another all the time. Whether it be by age, gender, ability, religion, special educational needs, levels of potential attainment etc etc.

Surely by using these labels we are reinforcing the very need for these labels because we continue to categorise, and completely unintentionally, stigmatise, our children?

What if we had a school system that was by its very nature all-embracing? Where nobody was stigmatised. Would we not then grow a society that was also, all-embracing and non-stigmatising?

By removing categories that are essentially arbitrary choices of measurement anyway, we would be more open to measuring children (and society) in more meaningful ways.

Do our adopted measurements and categories really tell us what we need to know about our children anyway?

Would it not be nicer to offer our children a far wider choice of how they spend their time? Would it not be far easier to STOP categorising our children in unhelpful ways and START letting them find their own groups and interests?

By letting children choose their activities to a far greater extent, surely we would then see a whole different set of categories emerge? These categories would paint a beautifully intricate and interesting pattern I am certain of it.

My sociology head says it would be fascinating to watch and see what happened to a self-selecting group of children if given free-reign within a larger learning arena. Would they grow up to become dissatisfied adults or wholesome, well-rounded individuals? Would they be in jobs they hate or would they be following their passion?

NB - Whilst 'Lord of the Flies' jumps immediately to mind when seeing lots of children making their own decisions, let's remember that we will actually be there in this example, to participate! 


Imagine, a group of kids (self selected with no restrictions other than total number and geographical location...although, Skype live would be a great idea too), who get told that today they have a range of options, for 8 hours: gaming, gardening, science experiments, treasure-hunting, decorating, reading, astronomy, crafting, free playtime and the list goes on forever depending on what you can provide, and then imagine how the groups form and what we would learn about our children by letting them choose and then simply observing them?

When children are younger we spend a massive proportion of time simply observing them and not intervening all the time. Why does this suddenly stop? Why, at the age of 4 and a bit, do we suddenly feel the need to be directing them, when let's face it, up until this point they have all done (without exception) a pretty amazing job, with just their immediate family and a play-dates!

Woah...craziness, right? Kids learn without being drilled?! They just need to reach a certain level of emotional maturity for that particular skill to emerge?! They love to learn! Remember, a child learns more in the their first two years of life than they will learn in the rest of their life time put together!

All this got me to thinking about an Unschool.

The Unschool I imagine,  would be a little like a nursery school where (some would argue) you meet your most authentic friends (because you are drawn together by common interests), you look forward to going in the morning, you laugh a lot and have fun too! At nursery school, you are not defined by something arbitrary that an adult has chosen for you.

I think nursery school is amazing by the way! I sent my middle son to nursery school. Admittedly, at first it was because I was afraid that something bad would happen between him and my PDA son if I didn't step in, but, in the end it was because I loved, loved, loved their ethos. I loved it so much that I became a parent governor (a big deal for someone like me who is so completely anti-social).

The nursery school environment, when done well, is all about choice and being yourself. I bet you could speak to hundreds of nursery school teachers and they would be far happier when talking about the children they interact with than those teachers you meet who are teaching older children. Why is that?

And, I think, children pretty much love nursery. Well, perhaps not all children and perhaps not all of them love it, but, even our very sensitive special needs children, can navigate nursery fairly competently.

It is when we step in with all our 'categories' and 'definitions' that things begin to go awry.

I imagine no age categories, no ability categories, no special needs categories.

I imagine free play and movement. I imagine respect and compromise and discussion. I imagine natural consequences.

All of the above can only happen in a safe environment too by the way.

One that is without arbitrary 'rules' and 'regulations' and 'targets'. Where learning can move with the free flow of ideas and people. Those arbitrary measures we all cling to (hello Ofsted) are dooming our children and their futures because they refuse to evolve.

In my Unschool I don't see name calling nor bullying. I don't see local government funding issues. I don't see 'special measures'. I don't see homework (unless you want to of course and then yay! We'll help in any way we can!). I don't see 'lunch times' across the group. I don't see punishments. I don't see rewards. I don't see compulsory lessons.

In my Unschool everyone is exactly where they are meant to be. They can be tested if they desire but their level of achievement shall be measured by their own standards for themselves. Adults, of course can give their input and opinion, but the choice of whether or not to be happy about any changes rests solely with the child. If that success means only sitting and reading in the same room as other people, then that is completely fine. If that success is arriving earlier/later, then so be it.

In my Unschool, if a parent chooses to stay, then that is excellent but they must be willing to participate in the activities the children are doing if asked to. THIS IS NOT A COFFEE SHOP.

Perhaps adults would even be willing to share their own areas of expertise and hobbies. Imagine what diversity that would bring to the learning environment? I find that the best teachers are those who know their subject and their audience. Appropriately vetted, self-selecting adults would be so very welcome.

In my Unschool there would be no uniform. There would be no seat (unless you wanted one). There would be no compulsory hair styles nor shoes. There would be as many sensory rooms as classrooms.

In my imagination it would be like an official Unschool.

And, as every unschooler knows, at the very heart of the Unschool would be the children who make it all happen.

I love working with, learning from and being around children and young people.

I think we as adults are very quick to complain that children are becoming 'lazy', 'greedy', 'ungrateful', 'unskilled', 'unhappy' and 'unprepared' etc for their future as adults, but what are we really doing to change that?  

We need to be radical in our thinking. We need to start giving back to our children so they can feel empowered and capable again. This summer has been the most amazing one we have ever had. My four children have just blossomed since I fully embraced the idea that living peacefully and respectfully is the best way to go.

Now that our learning environment is becoming calmer and more joyous, the learning is blooming.

Domink has been to two classes in the past week. Two! That is more than he has EVER achieved before and we haven't even been brave enough to try since 2011. This week he went to make sushi and he had his first parkour lesson. He was STUNNING. He surpassed his own expectations with how well the events went. We talked about it a lot before he went and he was confident that he would perform well under the 'pressure' (his words, not mine) but he would not guarantee that he would manage it all. He had to go outside for a little run towards the end of the first hour of the sushi but that was all. He did it. He did not need any support at all during the parkour class which was 2 HOURS. Just incredible.

This is really thanks to unschooling. It is a miraculous learning style. It proves the adage that all children will do well if given the tools and environment in which to do so. Those who know Domink will understand the magnitude of what he has achieved.

Hannon has been learning how to code his own game in MIT's Scratch Programming Tool. I do not have the words to describe his dedication, his skills, his patience, his determination and his problem solving abilities during these past 10 days. What this has done for his confidence is incredible. If he were an adult who learnt a new skill this fast and applied it for the number of hours he has and with the attention to detail that Hannon has given to this, they would give him a pay rise!
 
Lily has been the exception. Right now she is not steady at all. I think she is finding it frustrating to not have the skills she needs to accomplish the things she wants to. 'The Sims' for example. She really wants to play it and every time we try to do it together, by the time she has finished designing the characters (again, for the fourth time) she doesn't actually want to play the game any more! This means we are getting nowhere when what she really wants is to start helping them 'live'. When we eventually have a family she is happy with, we will move on and she will have the most amazing variety of social stories made of her choosing. It will be a very useful learning tool for her when she is ready and I'm sure it won't be long given how much we're practising!

Harriet has cut two teeth with two close on their heels as she reaches her 6 and half month. She is sitting up competently and moving from her bum into the crawling position (where she does that baby rock...hahahaha) and she is trying to pull herself up! She has her first cold right now too, bless her little snuffles. She loves any food she tries during our baby led weaning. It is messy and fun!

So, an Unschool for everyone. What a thought.

Thanks as always, for reading.

N x

Wednesday, 12 August 2015

Addendum to "All arguments are NOT created equal"

Tonight, after reading a post from a member of one of the groups I belong to, I happened to look up what was meant by PACE Parenting and I tried to find out what a PACE course involved.

Well, I was fairly gob-smacked when I started reading to be truthful!

The description resonated so strongly with me that I felt my breath catch. How had I not heard of this?!

It was describing exactly how our house functions when we are all trying our best! These letters and the principles they represent are our conscious goal as a family.

I genuinely thought that what I do is just called 'parenting'. Apparently not! Which led me to thinking about how that could have happened.

How I could have such a minority idea of what 'parenting' is that it requires teaching to other parents?

To be honest, I pretty much always feel 'controversial' when discussing parenting with people...although, I am meeting a fair few super mums these days who are on the same page. You know who you are! ;-)

In truth though, 'parenting' is itself a far too complicated a word. It can be (and often is) easily manipulated by the mass media/culture depending on the last 'research' (see below).

There is always a new 'trend' that parents 'must' conform to or else they are risking possible isolation and/or ridicule because of their lack of  'parenting' skills. Sigh.

I do not subscribe to many things that are considered 'mainstream' and for me, 'parenting' simply means loving unconditionally. That's it. Simple right?

Well, guess what? Loving unconditionally is what PACE describes and that is what I tried really hard to explain in my last post (even though I'm not sure that I really did)!

I don't have to worry now though because here is an excellent description of PACE

By the way, I think the term PACE is now becoming widely used because the term 'attachment parenting' (that's the term I may use sometimes to talk about our ideas and philosophy) has become somewhat disparaged and is perceived to be a little 'fluffy' in modern times (*cough* thanks to the main stream media *cough*).

Well, not to worry because now here comes the latest 'parenting' trend in the form of PACE! Excellent stuff! It can't come soon enough.

Let's spread the love! <3

Not sure I should type the next paragraph because my Aspieness is confused about social convention (no shit right, please see above) and it is now too late to call Cara and ask her for her advice, so here goes nothing!

If any of you reading this would like to contact me to talk about how this works for your little people, with or without complex needs, please do get in touch, I'd love to think it through with you.

I guess you could say it was my 'gift' (as someone on the Autistic Spectrum) to be able to see these principles and apply them (fairly) easily to my own family.

Anyways, if anyone is still reading, thanks.

Take good care,

N x

EDITED TO ADD:

All of the courses I am finding about PACE appear to be aimed at those who are foster carers or adoptive parents, or people working in child protection fields and therapeutic and supportive roles etc. Very few courses are targeting actual biological parents. This is because the focus of 'attachment parenting' in these instances is NOT related to special needs children, nor even children in the 'majority'.

PACE is being 'sold' by people working for adoption agencies/fostering agencies to Local Authorities in order to support their fostering/adoption processes. Obviously, this is great news for all those children.

But, once again, I am left thinking that for some reason, the 'establishment' are perhaps hesitant to give these skills to everyone, sorry, I mean every parent as well as to everyone 'becoming' a parent if you know what I mean.

Imagine a world where the birth parents of all these children who find themselves in foster care were taught the principles of PACE? Surely it would have had a positive effect in at least some of the cases? Hopefully one day we will find out.

I am so sad right now because I know my children do not have any attachment issues (I parent using PACE principles already, doh) but what they do have are complex special needs governed by their senses and neurological conditions (causing me to parent this way in the first place if I'm being truly honest, they taught me everything I know) and if other parents don't know any of this yet (that just loving, accepting, understanding, listening, empathising etc etc works miracles) then they need to be told too!

So, please, fellow parents (and especially those of you with children with special needs), do not feel that you are being criticised by the mainstream and do not feel that you have somehow 'caused' your child's special needs just because so many of their difficulties cross paths with those who have suffered some kind of attachment malfunction.

What has in fact happened is that you now know that your child was born with these 'special needs' in order to teach you these important principles themselves...for free! Voluntarily! Not via some crazy expensive, mostly inaccessible course! Aren't we lucky?!

Kids ALL need showering with the principles of PACE (playfulness, acceptance, curiosity and empathy), shit, all ADULTS need some extra loving from the PACE principles too!

Go on, try it.

N x

PS - I really am going to sleep now.

Monday, 10 August 2015

All arguments are NOT created equal!

Just a quick thought really (I'm sleepy).

Not all arguments are created equally.

Sometimes my kids and I argue/bicker/fight/disagree and any other adjectives you can think of for being of opposing views.

These events can manifest in many different ways. Shouting. Stomping. Slamming. Throwing. Screaming. Stand(ing) off (or is it stand offing). Hitting. And probably more I'm sure. You get the idea right?

But sometimes, just sometimes, they (we) are arguing in a way that is different to the ways listed above.

They (we) are actually having a discussion about something outside of their (our) own lives. It is incredible to witness (be part of) and I am sure that these discussions become more coherent and more structured the more of the 'less desirable' types of scuffles they actually have! To have a discussion, the more information you have to draw from, the better things are for you. My kids are learning this as they move away from violence and frustration towards discussion and negotiation.

It is more than just opinions, gossip, finger-pointing, name-calling, childish disagreements etc. It is 'grown-up' (eurgh) and 'mature' (eurgh) arguing!

I'm not sure whether or not this phenomenon (at ages 8 and 6) is brought about by us being in a different environment to most (accepting, familiar, comforting, safe, loving) or whether or not most 6-8 year olds do this too? I sure do hope they all do! It is so interesting to be a part of and really bodes well for the future.

But, when my middle two children disagree, it can go every which way and therefore, sometimes, thankfully, does go the way of adult (eurgh) discourse (picture Sorkin, the Wachowskis etc). It is civil, structured, to the point, well reasoned and interesting to listen to. They ask one another poignant questions. They use persuasive language. They negotiate every little detail. They are always on the lookout for the catch!

I'm not sure any of this will work in their favour in the short-term to be honest, given how patronising adults are in general towards children, but, for the time being at least, they are articulate and curious and learning lots...yay!

Maybe that is why we love our unschooling so much? Having got rid of any preconceived ideas that because I have been alive longer, I know more, the children's arguments all become 'valid'.

By the time my kids make their way out properly into the world they will simply have learned to accept and be themselves because they have been allowed to be (without fear of further reprisal maybe because my house does not endorse 'punishment' for punnishments sake)?

My house teaches you that no one knows more about you than you do.

If you know yourself, you're more than capable of disagreeing calmly and patiently and this is because you do not feel threatened in any way. You know who you are and you are competing with no one but yourself from yesterday.

You are not attached to the thoughts/opinions that you may have formed over the years. You understand that they are transitory.

You are simply attached to your right to have those thoughts and opinions and your right to articulate them.

If new information arises, great! More to think about and consider. Win win situation so long as you are not too attached to your existing thoughts.

So in my opinion, all arguments are not created 'equal' but they are all valid forms of expression which clearly serve a purpose.

They move you towards self-knowldge.

Food for thought.

N x

PS - Just in case you are going away with the impression that my kids (and I) argue a lot, let me put it into context.

We are together pretty much 24/7.
We are awake and co-operating for approx 14 hrs per day. every day.

The things we do change. The people we see change. But, we mostly do things together, barring the times D does not join us (he needs far more quiet time than us as you already know).

There is a fight of some description probably every day, yes.

There are 5 of us in our house (one of them being a 6 month old baby who is obviously always reasonable and easy to deal with), plus a carpet-destroying cat (don't even get me started) and an incontinent elderly American Bulldog (urgh..laugh if you like but you'd hate it too). Things can get hectic!

But, I reckon, if you a divided the number of fights by the number of hours spent together, and then compared that number to a more typical population, we'd look pretty impressive.

Tuesday, 28 July 2015

Thoughts about Pathological Demand Avoidance or Permanent Demand Anxiety by Poppy's Mum

Worth sharing. <3

"What’s in a name?

PDA - Permanent Demand Anxiety?

The fabulous Neville Starnes (PDA Society and presenter of the bluemillicent videos on YouTube) once 'redefined' PDA as ‘Permanent Demand Anxiety’ and I have found this so helpful and is how I think about my daughter all the time. It has also really helped me explain things to other people who hear the term Pathological Demand Avoidance and don't 'get it'. I was sick of people saying things like "Well she doesn't avoid every demand does she ?" or "But that doesn't explain the swearing or violence?" etc. Aaaargh!! The term Pathological Demand Avoidance unfortunately focuses on the behaviour that results from the anxiety. Permanent Demand Anxiety reminds us all that it is the anxiety that causes the behaviour.

It means I can give them an analogy or explanation that they might understand. e.g. someone who is fearful of spiders - they may be able to cope with little ones, or ones far away, or pictures of spiders or spiders in the garden but not in the house. They are still anxious about spiders but they may not react - they are 'coping'. That person may become more agitated if there are lots and lots of little ones, or a big hairy legged one up on the ceiling or are watching a documentary all about spiders etc. They would almost certainly react if one ran across the carpet in front of them. I then ask how they would feel if their partner or best friend dropped a spider on them? or opened a box with 100 tiny spiders and let them free ? And then got a 5 inch tarantula and put it in their lap ..... I can almost guarantee that the most non-violent, loving individual would experience and probably exhibit physical rage towards that loved one!

And that, I tell them is what it is like for my daughter every second of every day. She wakes up every morning surrounded by 'tiny spiders' and every second of every day she is aware of bigger ones lurking and massive ones that might be dumped on her without warning. And sometimes it is the last little 'spider' that triggers the explosion. I try and explain that the tiny spiders can be things like knowing she has to get out of bed, or go to the loo or eat breakfast. The demands that cause such devastating anxiety to our children can be so apparently 'undemanding' that other people fail to understand they are there at all.

And the thing I find most difficult to cope with is the fact that she is hard-wired for this anxiety. She will never be without it. My job is to help her find ways to cope with the anxiety, reduce it and not let it control her. I monitor and reduce the demands when I can or when I need to so that she has as much time as possible where her stress levels are low enough for her to think clearly and practice skills she will need in the future, and to enjoy her childhood (or at least not beg me to kill her because life feels unbearable).
I don't sanction or remove privileges when she has violent outbursts because I understand they are driven by overwhelming anxiety. And every single time it happens she has been mortified and apologised afterwards. She has frequently asked me "How can you love me when I am so horrible?" My biggest reassurance comes not when she tells me that she loves me, but when she tells me she knows I love her.

I also know that my daughter is incredibly brave but she needs time and space to gather together her strength. She might be able to step back, think about looking more closely at a 'big spider' and in her own time and with complete control over when and how far she goes will choose to face her fears. If she is pushed towards her fears she will react against and pull away (or if I'm honest she would probably swear and hit back!) I now have confidence to allow my daughter the time and space she needs to make decisions and this has proved incredibly positive for both of us.

Mum of Poppy."

Friday, 24 July 2015

Summer so far.

Summer so far, aside from being a bit of a wash out, has been interesting!

Hannon, Lily, Harriet and I have made more than a few trips to Houghton House after discovering that it is brilliant for role playing games. The kids have really let loose and played Batman, Avatar and countless other chase games/shooting games/hiding games/mystery games and ghost hunting games. They have played for hours on end in the beautiful surroundings of Central Bedfordshire.

To be honest, I'm a bit worried that the local residents might think we are 'casing the joint' for some big job as we have been there so often, mostly at sunset!

But, wow, to have them voluntarily leaving the house and running around outside regardless of the weather has been magical and it is a nice reminder of why we love the Summer so much.

In other news, Dominik called the police to come to our house. Not so great. No.

He told the dispatch lady that I had 'tried to strangle his face' and that he was being assaulted. Sigh. I am more than willing to confess that yes, I did lunge at him (but that I lunged at him due to tripping over the end of his bed) whilst trying to take away his controller and headset in order to stop him playing a game which was causing him so much anxiety that he could no longer distinguish reality from fiction. Shit.

About half way through the call he realised what he had done and began back-tracking at a remarkable rate, but obviously this was to no avail. The dispatch lady explained to him that she had a duty to send an officer to our house.

Lily went into instant meltdown imaging the worst and fearing that I would be arrested and Dominik was almost suicidal thinking about the potential consequences.

The male officer arrived within ten minutes of Dominik making the call and he was professional, courteous and friendly to us all.

He listened to what we all had to say and took the time to explain to Dominik that what he had actually done was waste police time for what was essentially a fight with his mum over his computer game.

Domink was embarrassed and upset but handled it well overall. I was embarrassed and upset but also grateful at the speedy response and the understanding shown by the officer.

All's well that ends well I guess. I think Dominik would hesitate before doing it again and I do think he learned this lesson. It has always been one of my greatest fears if I'm honest so I'm glad it is out of the way now!

I should add though, that the officer did tell Domink that he should call again if he felt genuinely threatened by anyone (including me).

Ummm, what else? Well, we bought a little tent for our back garden and have had some great fun sleeping out and playing games in it during the rainy days. Hannon has discovered that he can read Harry Potter by himself. Lily has just had her first ever day out without me (or anyone else she is related to) and it went really well overall. She did hide in the toilet on two occasions during the day and she had a massive meltdown once she was home but that is to be expected I think. I'm just so proud of her for wanting to do it and managing to too!

We've already been on our holiday to Scratby as well. That was a beautiful five days away. We did lots of swimming (Lily can now swim on her back) and we went to the beach and Great Yarmouth Pleasure Beach too. It all went by without incident but that is mostly because Dominik did not come with us. He chose to stay at home with my mum and the animals.

He told me that whilst we were away he did not have a single meltdown nor did he lose his temper or swear (my mum agreed) and he made a point of telling me that he should have been an only child. Oops.

Dominik just likes to be left alone and he loves the quiet.

I do feel awful when I hear this from him because I just feel so guilty that we can't do more. I obviously cannot make the house silent at all times and I obviously cannot vanish my other children but I wish I could, just for him. I'd make him a giant soundproof bubble if I could.

Although, he is very lucky I guess because he does get so much down time. He does not have to contend with school, shopping trips, visits to relatives, day trips etc etc if he does not want to and I suppose it must be helping.

This week he and I focussed on his self-esteem. He admitted to me that he does not often like himself and that he is completely unsure of how it feels to be truly, intrinsically happy. We talked about dopamine and what it does and we discussed how his computer creates that hormone for him and therefore ensures his 'happiness'.

Dominik knows that he needs to learn how to be happy in himself and without any external stimulation but he also knows that at this time, it is not possible. He knows that he is at increased risk of becoming a lifelong 'addict' in some way and he is conscious that he does not want this for himself.

He is also aware that he missing out on so much, this year particularly. He has missed countless trips to visit good friends and two short breaks. It makes me as sad as it makes him happy.

Together we can work this out. I know we can. But, like most things, it's just going to take a little time, patience and practice.

N x

Sunday, 28 June 2015

Our latest experiment!

It occurred to me today that it might be worth mentioning our latest (somewhat unusual) project.

For a long time now my oldest son, Domink (PDA, ASD, SPD, APD, dyspriaxia, ADHD, misophonia, urgh, and the list goes on but basically simply adds up to 'hypersensitive in all areas of perception' and 'n'th degree human being! Perhaps an evolutionary step?! Who knows, but these young people are coming through loud and clear and telling us that society is breaking down...they can't live in it any more!!! But ask yourself this, is the world they would prefer worse than the status quo?

Woah, massive sidetrack, sorry.

So, yes, Dominik has been asking for a room of his own. Specifically, the front room in our house. Traditionally, the living room I guess.

I have resisted and resisted and have kept telling myself that it would make life far, far worse as he would then have to self regulate his computer usage, his space and his time alone. Massive changes. Big gulp.

So, back in May, I finally agreed, on the proviso that he gave me his months allowance toward the furniture, bed and mattress and that he helped me moving his things into his new room. He agreed and we bought what we needed.

We then came to a hurdle. I did not have anyone who would be able to help me move the big sofa upstairs to what has now become our sitting room/living room/Hannon (and oftentimes, Lily's) bedroom.

I soon bit the bullet (amidst all the nagging from Dominik) at the beginning of June and paid someone. He did a few other jobs that had been depressing me too so overall, I guess it made us all feel much better!

Dominik moved downstairs just over two weeks ago.

The first few days were very rocky!!! I was stupid enough to push my luck and unfortunately, Dominik had a massive meltdown in public, which he hasn't done in an extremely long time.

I'd forgotten what they were like to be honest and I don't miss them one bit!

So, yes, I encouraged him to come out with us on 'moving day', even though he had already struggled to hold it together all morning and had been particularly dictatorial. Sigh, When will I learn?

He really wanted to please me (as a thank you for getting his room done) so he made himself come.

Well, yup, we learnt a valuable lesson at the same moment that day and it has changed our relationship in a big way and for the better. We both now know to be more mindful and to not try to be 'normal' even when it appears to be the right thing to do. We knew we had tried too hard and we failed.

Right moving on. Since that first day, life has changed.

Dominik is spending more time out of his 'room' than ever before! He even sat in our new living room and watched a WHOLE MOVIE with us! Without freaking out and spoiling it for everyone (do your kids who are on the spectrum do that, or is it peculiar to just mine)? He did meltdown as soon as I left to get everyone a drink but, nevertheless, it was a massive improvement.

He is choosing how he spends his time really well. Yes, he is still playing a lot, but it is different now. With the constant threat of it being taken away gone, he is clinging to it far less ferociously.

He will eat with me.
He will come and chat with me in the kitchen.
He came out for TWO picnics over the last week.
He played a game with me!!
He is a godsend when it comes to helping me with Harriet. He is by far the most amazing with her....she always laughs for him! She adores her biggest brother and he her.

Hmmm, he did have a meltdown yesterday though.
He desperately wanted to see 'Minions' and I said yes without hesitating and booked us tickets Thursday and we went Friday.

Well, he lost the plot before we left because we wore minion glasses and Lily went one step further and face painted herself yellow!!!

I thought it was brilliant and encouraged her. Well, Dominik went crazy saying he would be embarrassed and that it was "****ing stupid". He ranted and raved and demanded to be able to punch Lily or else he couldn't go. He was being completely outrageous. He ran off with the car keys at one point!!! How did he get those I hear you ask? Well, I had given them to him so he could go and get in the car first to try to avoid a fight! Yes, that was stupid!!! Hannon even told me so! Hahaahahahah! He insisted he wasn't going and I said fine, my mum was with us, so he could stay with her.

So, I get the keys back from him and he swipes at Lily, I escort her out to the car and belt her into the front seat. Dominik decides he wants to be in the third row (exactly why I need one, DLA, do you hear me) and I put down the seats and get him in sharpish.

Harriet and Hannon get in the middle. We're all set! Deep breath.

As we pull away, Dominik is in floods of tears.
He could not apologise enough.
He was devastated and hyperventilating.
I told him how much I loved him.
Hannon told him that it was ok and that he understood that it was just a part of his Apsergers.
Lily said she forgave him.
I told him it was in the past. That we got it, that we were really proud of him for coming with us, that we knew he could do it and that it was time to go and enjoy the film together.

It was plain sailing from there, with the three big kids behaving impeccably from there until we got back to the car. Harriet was excellent the whole time.
Lily proceeded to fall apart once back at the car.
Hey ho, we talked her down and laughed about how Dominik is more like to freak before we go out, Hannon is most likely to do it while we are out, and Lily, without fail, will do it as soon as we are leaving and she lets her guard down! So strange! I tend to do on the way out and on the way in! Not my best moment and definitely the times when I am most likely to lose my temper and need to take a time out!

So yeah, I think giving him what he wanted is paying off. My house is a happier place.

Lily loves being able to stay with Hannon (and even though he says he hates it, he keeps letting her come back even though I back him 100% if he doesn't want her stay with him).

Hannon loves that I can go and sit with him lots more during the day :-)
He can read for me now too in a quiet, comfortable space, and that is excellent. Massive hurdle jumped. He even read the promise at his Cubs going up ceremony better than the other three boys going up with him. So proud because when he started Beavers he was one of the only ones who did not read at all. Look at what he's done! He read a page to me a few days ago from "Soul Eater" and the only words on the page that he could not read were 'Pharaoh' and 'tornado'.

(NB an article I came across today adds to the idea of self-teaching in general.)

Dominik is so happy now he controls his own space.
He is even putting washing away, emptying his bin and bringing out plates and cups. Having ownership has helped in a big way.
His self-awareness with regard to his meltdown Friday was inspirational. I love him so much. I cannot believe how far he has come.
He was complimented by his hairdresser this week too for being able to sit so still and being so polite.
He has been going to the shop confidently by himself.
He has sworn less.
He has been quieter.
He has been sleeping more.
He has been nicer to live with.

But still, and most importantly, he really is so much happier.

The gamble is paying off ... for the time being at least.

Sending out progressive vibes for you all.

Thanks for reading.

N x

Some cool moments from the past two weeks.


On our way to see 'Minions'.


Lily and Hannon out with their Dad.


Dominik photo bombing me and Harriet!



Thursday, 4 June 2015

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 - 



Friday, 15 May 2015

PDA Conference

webpic_conf.jpg


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!

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

Tuesday, 12 May 2015

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