Progress

Something happened tonight.

I realised that my joy genuinely drives our family joy. When I am focussed and charged my energy seeps through everyone in my family. (My mum starts being complementary and butt-kissing so I know it must be there!)

For the past 5/6 weeks I have been obsessed with the idea of moving to another country within the next two years. This means that I have been binge learning Spanish, and trying to understand proofreading and transcription work, and I have taken (and passed with Distinction), an online TESOL course.

Being Autistic means I am capable of hyper-focus. Hyper-focus is in fact, my preferred state of being. I am learning so much that I can breeze through every other aspect of life. It's like my mind is so focussed on something positive, that everything else becomes very organised and almost military in its flow.

When I am truly inspired to do something I cannot help but focus on it. In this I am blessed.

So, over the past 5-ish weeks, I have taken great leaps towards achieving what I want for my family. The freedom to live anywhere we choose.

I have found many good online courses, for reasonable amounts of money, being delivered by people just like me! People who just gave their dream a real chance! I have found endless opportunities for work if I should choose to accept them. Proofreading, copy editing, captioning and transcription jobs are abundant! ESL teachers are in huge demand. The future is on the internet, which will lead onto the main point of this blog in a minute, but a quick aside.

(For a few years now I have despaired at ever being able to realise some of my own dreams. Now that is changing. Everything is aligned so that I can finally take another forward step.)

In my endless research into jobs, countries and lifestyles, I came across a job opportunity with a very famous game making company! It was not a job suited to my talents at all...but it was perfect for my oldest son. I sent him the link and he immediately came to me with ideas which I then submitted. He is buzzing with positive energy. He realised that he has a true talent in writing.

He can caption/vine/meme as if he were born to do it!

As he just said to me, ‘I’m overqualified for the internet!’ And he’s right! He has been information hungry since he came Earthside (and a fair bit before that too, to be fair) and his love of learning has been thoroughly sated by having access to the internet since he was very young. He was around 2 when he continually tried to break into our password protected pc (repeatedly and very often, ie every two minutes until someone caught him) so we had to show him how to use it or else we would not have had a pc anymore!

Dominik is the internet. He does not watch tv shows very much at all but he does read/play/investigate/learn, pretty much all day long. The internet is his environment. He understands it and moves in it as if he is a part of it.

Dominik is truly a child of the internet. He is discerning, open minded, generous, anarchistic, accepting, knowledgeable, witty and intelligent.

Writing comes so naturally to someone like Dominik who has done nothing but read since he taught himself at 3 years old by reading Thomas the Tank Engine by Rev. W Audrey (the original books not the new, simpler, modern versions).

Reading and English are his talents. I have always known this.

I am so grateful that I trusted him to know what was best for himself even when my entire being screamed, ‘nooooooooooooooooo’! Adn to be honest, still does on a regular basis.

Tonight I was overwhelmed with pride and confusion when once again unschooling/self directed learning triumphed over what can be an utterly paralysing condition.

I find myself trying to imagine what Domink would think of English and reading and IT, if he had been forced to read, write and learn what OTHERS thought he should for the majority of his time! It makes me feel so sad to think about it.

Dominik has been taking some online spelling/grammar/punctuation/typing, tests and he is finding them incredibly easy.

He is taking these with enthusiasm...a PDA child voluntary testing themselves. Who’d have thought it?! Well, anyone who has a working knowledge of PDA children and adults would definitely know this! When motivated to do something not much will get in their way so long as they are supported and nurtured through the process.

I guess my point is that, it takes huge leaps of faith to achieve the life you dream of but they are worth it. Do the work and pay attention to what gets you further along your path and the goal becomes less important. The path is what matters...it paves the way for the dreams.

Start leaping!

N x 

PS - Harriet has also said she'd like to give going to nursery another try...so here we go! 

 

Update on the neurodevelopmental therapy.

I thought I should write an update on the 'brushing' therapy.

In case you're not up to speed, my oldest son Dominik (PDA, SPD etc) had been receiving neurodevelopmental therapy since June 2015. We have been visiting Bob Allen in Windsor roughly every 6-8 weeks. Dominik has been slowly releasing his retained infant reflexes (please see Bobs website or Sue Hyland's blog for an excellent synopsis of what these are) and today we found out that we are on to the next stage in this process. We no longer have to brush twice daily (on various different body areas for a varying amount of strokes), but now Dominik has to take charge and complete one exercise per day which consists of getting in and out of one position. I think Bob called it the 'baby' position. The process will integrate Dominik's left and right hemispheres (brain and body) whilst also improving the communication between his upper and lower body parts. Dominik was confident that he could do this and I think he is even looking forward to it.

He was also excited to see Bob today! Bob is funny, charming, trustworthy and calming. He has a positive effect on Dominik and I think he might even care what Bob says to him!

Dominik is very proud of his progress and has even seen an osteopath (suggested by Bob) after being discharged from his successful physiotherapy sessions!

Dominik and I have been massaging his scars, brushing twice a day and doing exercises recommended by both the physiotherapist and the osteopath. As those of you with PDA children (partners/friends/parents etc) already know, placing any demand on them is difficult and could result in a huge meltdown depending on various factors, but for a boy like Dominik (who basically lives with no demands placed upon him at all), I was worried that this would be a particularly big deal!

When we left the osteopath with a list of 8 new exercises to do every day, I wanted to cry.

I'll be honest, my anxiety went through the roof and I felt so overwhelmed that I thought I was actually going to vomit.

Domink has been amazing when it comes to cooperating with all of these interventions but that does not mean that he will always be able to be that cooperative! I am hyper-vigilantly searching out the next source of 'too much' for him all the time. I am constantly anxious that the next request could be one request too many. It can be exhausting doing mental gymnastics at this pace. Kudos to all my fellow warrior mums.

Well, guess what? I'm proud (and more than a tad relieved), to say that he has been consistent in his cooperation and on the occasions where I have been reluctant/and or felt too tired or busy, he has requested his therapy and I have done it.

When something has true importance these children, (and adults) with PDA pull out all the stops.

PDA children value the truth.
They value quality.
They value authenticity.
External rewards are, in the main, disposable and transient and our children seem to instinctively know this.

When it is important to them (and they are intrinsically motivated), they will do it and they will do it to the absolute best of their ability and with the same degree of enthusiasm with which they undertake everything else that they choose to do! (I know...I wish he wanted to wash/change/brush his teeth/sleep too!)

The very qualities that make them so vulnerable and anxious and the very same qualities that will cause them to soar.
Tenacity.
Wit.
Intelligence.
Empathy.
Passion.
Knowledge.

I could go on all day but I won't. I'm sure you get the idea.

Dominik has started to find himself. I have evolved in my role in his life too. Perhaps I'm even finding myself.

Felicity Evans told me recently that these children (our children) are here to help us heal ourselves and our family trees through their energy. I have no doubt that she is right. Please do visit her website and especially take a look at the Resources page. It if fantastic.

Dominik is surging forward and he is pulling us all along in his wake. I am so proud of him.

There is one final thing I wanted to say:

I am currently looking for a family to volunteer some of their time to me so that I can develop my support and advocacy skills with a view to establishing a family support and advocacy business aimed at families living with PDA (perhaps this will expand with time but I dont know yet). I would love to meet a new family and see if I can help facilitate some positive changes in their lives.

Please do email me if you'd like to participate.

N x

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

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

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!

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."

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

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!

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

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

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

The Unravelling!

Those of you with children on the Autistic Spectrum are all well aware of the concept of unravelling I am sure, but I wanted to tell you a little my daughter Lily who is 5, going on 15 (and soon to be 6)!

Lily was born, unassisted, in Peru in 2008, in a room overlooking the sea, in a tiny village called Los Organos. She was born in the early hours of Christmas Eve and therefore earned the affectionate nickname of Angel De Navidad...Christmas Angel.

It was a very fast, easy labour and delivery and because of the time difference, we were able to Skype with our family in England shortly after she was born so everyone could see her.

She was a lovely baby. Smiley, affectionate, easily humoured and friendly. She met all the milestones with ease, fed well and developed with no obvious 'disabilities'.

We lived in Peru until Lily was 15 months old when a family breakdown forced us to return to Bedford.

Upon our return we were homeless and income-less so we stayed with my mum. She lives in a three bedroom semi so the little ones and I shared a room! Dominik had his own, my mum had her own too and I shared with Lily and Hannon.

It was around January 2010 that I began to investigate Dominik's quirks and discovered that he had a myriad of differences.

I suppose being alerted to all the different neurological conditions opened my eyes to all the possibilities and I began seeing Lily in a different light.

She wasn't happy being dressed. She did not sleep well. She wasn't happy with any kind of change. She became fussy and obsessive. She was resistant to new people and places and she adored her nanny!

I suspected she had an Autistic Spectrum Disorder with the often found sensory integration diffculties to boot very similar to her oldest brother.

Fortunately, our life was structured in such a way that I was able to accommodate her differences with ease most of the time. The decision to home school was a blessing in disguise! It enabled us to find our own rhythm and it helped me to understand Lily (and Dominik and Hannon) better than I would have been able to had they been away from me for hours every day.

Lily's difficulties continued to expand. She was edgy, nervous, aggressive and took to running away whenever she was upset/angry/overwhelmed or unable to communicate properly.

Between the ages of 3 and 5 she was at her most challenging. We could not go shopping, to busy parks nor noisy play centres and we could not travel any distance in a car at all.

She would take hours over a meal, procrastinate about clothes and shoe choices and point blank refuse to do anything that was outside of her comfort zone.

Life was becoming more and more isolated with two little ones on the spectrum.

When Dominik was 9 and Lily was 5, I applied for Disability Living Allowance. I was successful for Dominik in the first instance but it took two tries to get Lily an award.

The first thing I did was find a local homoeopath with knowledge of Autism. I contacted Alison Jones who agreed to meet us all and see what she could offer.

Alison was a godsend. Her patience, tenacity and understanding made a refreshing change after the professionals I had met up until that time.

She put Dominik on a series of remedies and the difference was almost immediate.

I decided to ask Alison to treat Lily and Hannon too.

Lily began seeing Alison in early 2014. She was given several remedies to tackle her challenging behaviour from several angles. We dealt with language, maturity and tried to increase her sense of calm.

Lily has been a completely different child during this time. So different in fact, that I began to question whether or not I had imagined all the difficulties she was experiencing.

Things have now changed!

For those of you who do not know anything about homoeopathy, there are a couple of stages that the remedies go through. There is a 'proving' stage where you expect to see an escalation of the symptoms for a short time (this means they are having an effect) and then there is a settling period where the remedies 'find their mark' so to speak and the behaviours are diminished, or in Lily's case, eliminated completely.

Lily has been stable since early summer. Her remedies has varied slightly but have not 'tailed off' to any extent. She has matured, her language has flourished, she has not had any violent episodes nor has she had trouble sleeping. We have had a real life!

At the end of last week that all changed! The remedies seem to have finally run their course and the difference has indeed led to an unravelling the likes of which I have never seen before.

She is anxious, easily upset, extremely emotional and fragile. She is punching, kicking, running away, hiding, screaming and reverting to the behaviours of a toddler to make her point. She also seems to have forgotten how to use any words at all at times of high anxiety. It has been an eye-opening and depressing few days.

These kiddos have a tendency to lull us into a false sense of security I think. Many weeks can pass without incident and then, out of nowhere it seems, everything regresses. Sigh. It is so disheartening and so very distressing to watch it happen. To see Lily so traumatised by her own mood changes has been horrible. She is at an age now where she is very self-aware. She knows that she is behaving differently and this alone frightens her compounding the problems further.

Lily was given an emergency remedy this morning and has had a semi-aggressive reaction which was thankfully, short-lived!

I hope we are now back on track but only time will tell.

There are a couple of good things to come out of this experience and they are:
Firstly, I wasn't imagining her 'disability' in the first place. And secondly, the homoeopathy is having a huge impact on her behaviours in a positive direction.

If you have any questions, please do contact me. I would love to share our experience some more.

Here's wishing for a quiet day for us all!

N

All because of a Galaxy bar!

I read many stories from other parents (mostly mums) about the abuse they suffer at the hands of their highly resistant Pathologically Demand Avoidant children and to be completely truthful, I tend to sigh and move on quickly as they upset me.

I did think though that it might be useful to describe what happens in my house when Dominik, my PDA eldest son, has a bee in his bonnet about something.

At this current point in time, Dominik's 'bees' tend to be about food or money.

Dominik was once a slim, energetic, active child who pretty much ate what he wanted and didn't gain weight. Well that is not the case anymore. Over the past 18 months, he has slowly become more sedentary and more fixated on unhealthy foods.

I am a conscious shopper. I don't buy snacks as a rule, we don't have chocolate in the house nor do we have jelly sweets, ice cream or fizzy drinks. I buy organic, whole foods and I cook all of our meals form scratch. I get my Abel and Cole box every week and we drink fresh juices and enjoy home made soups on a weekly basis. I also have never had a microwave.

My children's health and well-being is something I take seriously and it is one of my top priorities. I spend plenty of time telling Dominik about essential nutrients and vitamins and we even went so far as to give the main vitamins personalities and characteristics so my children would remember why they were so important!

Well, this is all well and good, but with a PDA child, once the genie is out of the lamp, it is impossible to put it back.

We had a very close friend and neighbour who would regularly turn up at our house with the giant, £1 Galaxy bars and share them with my three. This honestly was not a problem because whilst I may buy very little of the sugar laden foods, I have no problem with others buying it for them. In fact, my mum relishes this part of being a nan!

Yesterday, Dominik decided he wanted a £1 Galaxy bar as he hadn't had one in a very long time. This is true, it has been months since we've indulged in a giant Galaxy, but I still not want him to have one as he had certainly had enough calories for the day already.

I took a stand and said that I would not go to the shop and buy one.

That's when it began. The screaming, the crying, the throwing toys around the room, the ripping my duvet cover off my bed, the hiding under the bed, the swearing, the punching, the 'you hate me', 'you're the worst mum in the world', refusing to have the shower that had already been put off since Thursday....and the list goes on.

Yes, this is hurtful, difficult for my smaller children to witness and downright exhausting (especially after an hour and a half) but I stuck to my guns.

What I often read in these scenarios is that other parents escalate the situation...adding on punishments and retributions for the current round of disruptive (panic/anxiety driven) behaviour whilst it is occurring. I do not do this.

I sit quietly, I maintain eye contact, I speak in a soft voice, I empathise, I reiterate my point and I finally say that I am done talking about the Galaxy bar today.

This is not always guaranteed to work. As I said, this particular event happened over an hour and half at top volume. In the end he went and curled up under my daughters bed. My son went to see if he was ok. He was ignored. My daughter went to see if he was ok. She was ignored. I sent him a text message (which is sometimes the best way to communicate to him that yes, I do care, but no, I will not talk about the issue any more) and I was ignored too.

He eventually came out and instantly complained that none of us cared about him. I pointed out that we had all tried to make him feel better....which he did not acknowledge as being true, but he did drop the subject.

In the end, the meltdown was over and we all got on with our evening. I needed to nip out to the shop and while I was there, I bought him a small Twix.

I took it home and gave it to him. He was over the moon. Full of gratitude and love because even though it wasn't what he had asked for, it was an acknowledgement of his current needs (and in my mind, a reward for moving on relatively quickly from a meltdown). He gave me half of one half. Proud mummy moment which also demonstrates that it is less about the chocolate, and more about the control.

No, it wasn't what he had demanded. Yes, it was small. But, most importantly I think, it left him feeling like he had not lost face. That he was still loved. And that yes, I did indeed care.

I'm sure there are plenty of people who will see this as rewarding 'bad behaviour' but I don't. For me, it was a way to connect with him, even when he is in the dark. He knows that his behaviour is unacceptable (after the event) and he knows that it won't help him achieve his goals (after the event). But he also knows, that I love him, and that if something is reasonable, and not extravagantly over-indulgent, he is likely to get it.

I try not to sweat the small stuff. For us, meltdowns, can become small stuff if they are handled with sensitivity and empathy.

N x

Dominik in Portugal with his precious 7Up! 

Thinking about respect.

Last night I was kept awake by a series of persistent thoughts focussing on the concept of respect.

The thoughts consisted mostly of questions and I thought I'd share them here, if only to stop them nagging me!

We constantly ask for respect from those around us, but how well do we demonstrate the concept?
Is it something that is easier said than done?
What are the consequences of a lack of respect?
What other virtues arise as a consequence of respect?
Is it the cornerstone of good relationships?
Is self-respect a consequence of living surrounded by respect?

As an unschooling/life learning household respect is something we talk about a lot. Our lives are so intimately linked that often times respect becomes the lynch pin of our day to day life. Afterall, how else would we ever get anything done!?

For example, I need to run some errands and my youngest children (7 and 5 years old) are too young to stay home alone so I tell them what I need to do and explain that they need to come along. They are both busy (one playing Ratchet and Clank and one watching My Little Pony) so we talk about how long they both need to finish what they are doing and agree when we will be ready to leave. When the time comes, we leave without a fuss. Phew.

I think that this approach is particularly helpful with Aspie children and especially for those with PDAs (I am going to write about PDAs in more detail in the coming days) because it allows them to have both have some control over their time and it give them time to prepare themselves for the upcoming transition (which we all know is very hard). There are no surprises (or at least very few) and when there are, the children are better able to manage them as they know that it really is unavoidable.

I think the anxieties associated with Autistic Spectrum Disorders are lessened if the person feels in control. We are extremely privileged in that we can afford to spend the time respecting one another's needs and quirks.

Now, some of my family have said that I am setting my children up for a gigantic fall because the world doesn't work that way in general. I agree! The world is not always respectful. However, I completely disagree with that being a good enough reason to not live this way.

Which brings me back to my original thought. The more respectful you are, the more respectful your friends and family will be and consequently, perhaps, the world will be too. How can that be a bad thing?

I firmly believe in the Ghandi quote, "Be the change you wish to see in the world". I want my children to learn by example. Just because I don't think what they are doing is 'valuable', it does not mean that it is not. Who am I to judge? How would you feel if someone diminished your passions? How different would your life have been had someone let you spend four hours colouring your picture to the best of your ability? Or letting you devour book after book alone in your bedroom?

I firmly believe in empowerment and I think that the best way to empower and prepare my children for their future is to let them discover who they are, what they love and where they want their lives to go.  I have long since let go of the notion that I know what's best for them (having a child with PDAs tends to do that). I don't. I can neither see the future nor can I dictate how they spend their time. and who they are.I resent people dictating to me and I see no reason why I should dictate to someone else.

As my children grow up to explore the world on their own, which I firmly believe they will, they will do so standing firmly in their own power and refusing to let people bully and manipulate them.

N x