Irritating timing.

Every time I get a little distracted and disheartened with life in general, it turns around.

It is literally like I need to hit my version of 'bottom', (which isn't very low!) in order to turn it around.

I have been feeling truly disappointed with my lot lately. It is fairly uncharacteristic for me to feel pessimistic and frightened, but I have been.

On the surface everything is great though! I honestly cannot complain.

We have all that we need and we are healthy and (mostly) getting along well with each other happily.
The weather has been wonderful!
We've had a lovely family holiday in a lodge in Norfolk and were able to visit dear friends.
Lily is managing life so well it means she must be happy and stress free. Yay!
Harriet is pushing every limit she encounters in true 2 year old style! It is exhausting.
Hannon is designing games and creating his own redstone circuits whilst having agreed to go back to Scouts. Exciting times.
Dominik went to the cinema alone today (at his request), gave Hannon permission to use his PS4 whilst he was gone (arghhhhh, never happened before), had a shower before he went and loved every minute of it. So, so proud of his achievement.

The children have all been talking about their passions and what they see in their respective futures. They are all enthusiastic about their options and seem to be approaching the subject in unique ways.
Hannon is focused on being a game designer and is flowing with ideas of projects to work on with his friends.
Lily is drawing and offering her 'chibi' portraits for sale.
Dominik has asked to attend voice coaching tuition to improve his chances of becoming a professional voice actor.

Such wonderful, genuine aspirations that will allow them to live authentic lives and hopefully remain happy and safe. They all want to generate their incomes from their own talents.

They are all conscious that their choices allow them to travel in the future whilst they continue working! And they also know that they will be able to determine their own schedules to a large extent!

I've been talking about creating an income from one of my passions too, so I can completely relate to their emotions. I sometimes wish that I'd been encouraged to follow my instincts and had the freedom to develop my passions at their ages.

But I think that all of the above happened exactly because the last few weeks, until today, have been dull!

Since we returned from our holiday, we have kept our socialising to a minimum (and our spending) as we all needed to recharge, but it has made life a little quieter than usual.

Today was clearly the end of that cycle. It feels almost as if we flat-lined for a moment and then rebounded afresh!

I now realise, that for our family, a natural 'lull' is absolutely necessary in order for us to coalesce the knowledge we've each been gathering.
It's like the moment before you are finally able to make a decision about something you've been procrastinating over! And on a family sized scale!

The learning is happening for all of us all the time if we would only slow down enough to actually process each moment.

I feel so lucky to be able to offer my special needs children such a varied and interesting life.

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

A discussion about therapies.

Last night I was involved in a discussion with a lady called Jude Seaward who has always been my 'go to' for more practical, empathetic approaches to helping my children, and particularly my PDA son. You can find out more about Jude here at her website, "SimplyMisunderstood".

She was asked by someone else in the group we belong to, what the difference was between Cognitive Behavioural Therapy (CBT) and Neuro Linguistic Programming (NLP) and why one might be more beneficial for children (and adults I guess) with Pathological Demand Avoidance, than the other.

I am going to copy and paste the discussion below as there is not much more I can add. Jude's summary was concise, comprehensive and easily understood.

Here you go!

Jude:

"What I have found is that therapy alone doesn't work, or is very slow. I have found that it must be multi elemental so you look at the environmental changes, teaching a new skill in line with their development and broken into small steps, altering interaction and changing the persons approach.

That is where NLP is slightly better than CBT.

CBT is about challenging people's views and offering alternative thoughts. For example, my friend walked past me and ignored me; 1) because they didn't see me or 2) because they don't like me and are ignoring me. So, CBT would look at the evidence to support or disprove the persons thoughts.

This process, if you think about it, is quite directive, and in some ways challenging. This, in its own way, becomes a demand.

With NLP, it's about building a new thought process and skills, so if you see your friend and they are walking past, you can call them, tap them on the shoulder and so on. You have a shared experience in the process. Instead of being an exploration, you look at the positive thought patterns and plant ideas.

The more you practice them, the more your brain positively reacts to it.

So, instead of with CBT, saying, 'Why am I scared? What can I do about it?', with NLP you would look at, yes, it does worry me but I can do this. Do I need to ask for help, or do I have the skills?

This way it helps the child (or adult) develop coping skills that they can use, (rather than with CBT changing what they think) in a logical format. It is very subtle, the difference, but one is more structured and therapist led (CBT) rather than free-flowing and child-led (NLP).

This is why it works better for kids with PDA...it gives them some control and relationship with the therapist - it is more nurturing.

Also, NLP will take into account the preferred learning manner and get you to be more in touch with your body, helping you to realise what senses you use to take in information from the world.

It's used a lot hypnotherapy where a positive thought is 'planted' to be triggered. For example, I used it when studying and the thought was simple: I like to read and study. This was in line with my natural balance but I reinforced it and it made doing my masters a breeze as I enjoyed it even more! Even now I enjoy a book (but not always a reference book)!"

So, there you have it. The subtle and yet crucial difference between CBT and NLP.

After having this discussion with Jude I realised that, whilst I don't have the technical terms for what goes on in my own home, I am following NLP principles. We constantly build on what makes us happy and helps us to feel accomplished. We rarely talk about 'deficits' and 'struggles'.

All learning in my house, (social, emotional, physical, educational etc.) happens by building on strengths and focussing on positives. I do not ever begin an activity with my children based on the premise that they need to 'improve' or 'practice' as these in themselves devalue where their skill level is at this current time, which in itself can be discouraging (especially for a child with PDA who has massive anxiety about their performance to begin with).

I know I risk sounding like a broken record, but, the unstructured learning approach for kids with PDA  is so very beneficial. It is also, slower and it is more bumpy and it is certainly requires a lot more faith, but, in the long run, it leads to better outcomes because ultimately, it is an internal change and not an external change.

If your child, whether they have the PDA part to their diagnosis or not, is anxious about failure and struggles to get motivated if the task is something that has been forced upon them, please consider how NLP and using different language might help.

Are you building on their passions? Are you harnessing their interests? Are you strengthening their confidence and self-esteem by using a 'can do' attitude?

I hope you have taken something from this short discussion that can be of use for your family.

Have a great day,

N x