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! 

 

Meaningful Engagement.

We don't do science. We don't do maths. We don't do music. We don't do geography. We don't do ICT. We don't do drama. We don't do PE. We don't do art.

But of course, we learn about all of these broad categories continuously, in one way or another. To try and quantify a genuine life/education (synonymous imho) is not possible! That would diminish the very experience itself. We could not measure it in and of itself because then it would cease to exist.

Learning is fluid. In order to be truly valuable the learning has to be able to bend and change at will.

For example, I cannot say anything about tomorrow other than that we will get up, get ready, eat, walk the dog, play, read, cook and then go to bed.

If you had asked me this morning whether or not Lily would grasp fractions whilst talking about the time, I could not have predicted that. But she did.

If you had asked me this morning whether or not Dominik would run around the house this evening examining literally everything there is under a black light, I could not have predicted that. But he did.

If you had asked me whether or not Dominik was going to learn how to combine probabilities today, I could not have predicted that. But he did.

If you had asked me whether or not Harriet was going to show me a perfect bow and a cute courtesy today, I could nto have predicted that. But she did.

If you had asked me this morning whether or not Hannon would go to the shop for me...well, you get the idea!

On another note, I also read the draft for the soon to be updated EHE Guidelines today because it is out for consultation until June 2nd 2018. The new guidelines would attempt to destroy our way of life (an example of which I have highlighted above). Our privacy would be brutally invaded against out wishes (right of entry to our home or else risk sanctions). Our family life would be placed under a microscope by an unqualified and unknown stranger (or risk sanctions).

When did we decide that this was ok? I did not think I was living in this kind of country!

I am also so frustrated that people don't seem to understand that the measures that are currently in place are powerful enough to deal with any safeguarding issues that arise when implemented competently.

As a conscious and gentle parent, I care enormously about children being kept safe. What is being proposed in the new guidelines will not enhance the measures currently available. It will easily supersede them. As a home educator I will come instantly under suspicion and scrutiny.  I am a 'red flag'. What the hell does that mean? How dare they! People in glass houses should not be throwing stones.

As a result of the above, my children have talked with me extensively about their rights and how they could be affected by these potential changes.

But of course they have! We practice consensual living! We consult and discuss and compromise with one another all the time so they are used to talking about their rights and their responsibilities. (Another example of something we don't 'do' - explore British Values! Or are these still British values? I'm not sure anymore.)

If you had asked me this morning whether or not the children and I would discuss their rights as citizens, I could not have predicted that. But we did.

I also caught sight of the news about Syria and I find that once again, as above, I am completely insulted by everything going on right now that is being directed by governments!

The public are once again outraged at the thought of dropping yet more bombs on innocent people and still, the government are going to forge ahead anyway! Sound familiar? Anyone remember Iraq? (Apologies for the sarcasm.)

If you had asked me this morning whether or not my family would discuss history and war and democracy on an even grander scale, I could not have predicted that. But we did.

You see, learning has no boundaries. It cannot be meaningfully measured as it is a constant and continuing process, so much so that once it is interrupted, it automatically becomes 'less'.

The more stringent the guidelines are (any guidelines) and the more rules that are put in place, the more the authenticity and the meaningful engagements are kept from us. You cannot be happy and peaceful when you are in chains.

I will not sit back and say nothing about the state of the world. If I won't stand up for my children and their right to be safe, happy and self determining, who will? Just because the government treats me like an incompetent child who knows no better, it does not follow that I will repeat that mistake. My children would not stand to be bullied by anyone, least of all me. I have not raised them that way.

In the spirit of community and continued personal development, the children and I attended a forum about self-directed learning and I am sad to say that I came away a little disappointed. I wanted it to be a chance to meet like minds and meet some free range children and hear what they had to say about their futures but what it actually was was something different entirely.

The event that sticks in my mind the clearest, is when my son had wanted to use the weekend, and a massive community, to make an escape room! He was told we could only book a space for a 30 minute slot. Well, it isn't possible to create an escape room in just 30 minutes so he decided not to bother in spite of my protests that I was sure we could sort something out.

I didn't think that this was in keeping with the spirit of self directed learning at all and it really clouded my view from there on in. My son was disappointed after this happened so we decided to go and do something different instead...so we went for a walk by the sea!

I kind of wish we'd saved the money and gone to Comicon instead but, I had to go and see for myself what it was all about, and the children were so supportive of my desire to go that I did give it my best shot but found that that kind of environment just isn't for me!

I have had so much to write that I'm not sure any of it made it out in tact!
Sorry. It's a bit of a garbled mess. I might come back and edit it.
But I probably won't!


In conclusion -

In order to truly learn, I am more and more leaning towards the idea that it has to be in a completely self-motivated and malleable environment. You just can't plan for it!

N x

Contemplating Snowflakes

Whilst Lily and I were making paper craft snowflakes this evening loads of things occurred that I felt compelled to share!

Firstly, it was unanimous, amoung our little family at least, that the 6 pointed snowflakes looked amazing when compared with the 4 pointed snowflakes.

We asked eachother why and had a nice discussion about nature, Fibonacci numbers, symmetry, tessellation, fractions and probably a couple of other things too! Win, win with a spontaneous and cool Christmas craft!

The snowflakes also brought to light a few other things unrelated to the snowflakes themselves.

Lily found it really hard. Overall. Not just one part. She could not imagine the completed snowflake in her head and even after she had cut one, she had to refold it and study what she had done in order to draw another. She also could not follow a pattern. Whilst she was designing her snowflake, she constantly unfolded and refolded, indicating again that she was unable to imagine what it may look like in the end (when unfolded). She point blank (read - after a huge meltdown), refused to use the second method we found for folding the paper (the one that created the 6 pointed snowflakes) because she thought the first method was easier. And finally, she found the cutting really stressful. She was breathing hard and then holding her breathe. She was groaning and gnarling with frustration. She was terrified she would cut her design too far and ruin it. She did actually do this a couple of times and both were snowflakes were violently screwed up and thrown across the table.

However, she is now happily sat making her snowflakes, her way and she is improving fast! Oh, and they are being stuck all over the house! :-)

During the snowflake making, Dominik came into the kitchen with his office chair, tablet, hat and headphones so that I could do his daily neurodevelopmental exercises. Amazing. I didn't even ask him to come. He wandered in and was ready to get started.

Well, that didn't last long. It really was too good to be true.

Let me explain why I think Dominik then had a huge meltdown (larger than he's experienced in a fair few weeks).

On Wednesday, we're going to see Hamilton in London. I cannot recall if I have ever mentioned his obsession with the musical in this blog, but, it's been there, for probably around 9 months now. He knows all the words to a large chunk of the songs. He has researched it's performers and writer, read parts of the Benjamin Franklin papers, learned some American History, spent hours singing the songs and has generally been very Autistic about it!

It's heavily on his mind and is basically replacing Christmas as his 'event' this year. Everything in his life revolves around 7.30pm Wednesday night. He is excited, terrified, nervous, angry, thankful and anxious all the time.

So, back to the kitchen, the reason he was unable to even start his therapy is because he started talking to me about his sleep pattern. It is all over the place and he has been trying  to 'correct it' (his words, not mine). As he sat on his chair he asked me what I thought he could do to try and ensure he does not feel tired during our evening out to see Hamilton (which is in fact a late afternoon to an early morning in reality) and I answered him.
That was my mistake. He did not actually want to hear my suggestions (turn everything off, have a warm milk, put on the fan for white noise and stay in bed to relax and, hopefully at the very least, help his body understand that it is bed time now), what he wanted was a big hug and some empathy.

Soooooo, mine were not helpful suggestions in the circumstances. They were stupid, useless, a waste of time and obviously not going to work for him (his words). Sigh. He stomped off. Slammed his chair against the kitchen cupboards and slammed his bedroom door for good measure.

I probably should have seen it coming when I noticed that his actions were literally, 'too good to be true' but I didn't. I was worn out from calming and coaching Lily for half an hour. I was brain numb from talking about Fibonacci and geometry. I was excited that Dominik was doing something VOLUNTARILY that I have literally had to beg him to do every. single. day. since September. I missed the clues!

But, here I am now, analyzing what happened and seeing it all more clearly.

I think that's why I write this blog. Having no partner to reflect with means that I have to get the thoughts out somewhere! Ta-da! :-)

Dominik will be ok. I will go downstairs now and give him that hug and tell him that of course he won't feel tired and that of course he WILL NOT fall asleep on Wednesday! And that it is going to be perfect.

Thanks for reading!

N x

PS - Snowflakes also made me think of a friend who lost a loved one this week and send her a little extra prayer. Life is just so precious and fleeting, much like snowflakes themselves, so love each other and be kind. <3

PPS - Lily is writing her first manga! Just giving it a mention because otherwise I will never remember when she wrote it!

There is ALWAYS more to learn.

The home education community is currently feeling under attack once again. (There is a pattern.)

Lord Soley's bill had its second reading in the House of Lords last week and is proceeding to the committee stage whereby amendments and changes can be made before it is presented again.

My mood is wobbling between screaming, "I told you so!" to anyone who will listen/hiding from all social media/springing into direct, offensive action or, starting some process of family defense!

Amidst all of this angst though, I think the above title is vitally important.
I am desperately trying not to lose sight of what I love about my family life and why we choose to live as we do.

The title of this post is the reason why I LOVE home education, and especially unschooling.

We are all always learning and we know that there is ALWAYS more to learn. We are never done.

In my house:

• We do not kid ourselves that it is only during 'lesson time' that we are learning something important. 
• We do not wait for someone else to suddenly impart the knowledge we need upon us.
• We do not believe that all there is that is worth learning comes in bite-size chunks in age appropriate categories and can only be delivered by 'qualified' teachers.

The thought of having to teach my children a prescribed curriculum and subject them to standardised testing, just sucks all the joy, spontaneity, creativity and desire OUT of our learning experience and therefore our family lives. If they wanted to learn in a traditional way, they would all choose to be in school (yes, they have the choice and their voices are loud and clear let me assure you :-D).

If the Lords wish to have a larger say in how I educate my children (or how they educate themselves for that matter), they had best be providing the funds for me to do it! This is of course in the same way that they would fund a school! If the Lords want that right then they need to accept the financial responsibility too. I am almost certain that this is not something they would consider.
 
I perhaps would not be quite so bothered by their interest if it weren't for the fact that modern science has demonstrated over and over again that active, effective, long term learning does not happen in a classroom style environment!

Academics have also proven that delaying formal learning IMPROVES long term results.
We know that intrinsic motivation is key and yet we push more and more external rewards.
We also know that homework has no significant, measurable effect on results and yet it is still mandatory in many schools.
We know that our school population are in the poorest mental health EVER in history and yet nothing is being done about it.


Obviously nothing about the bill is set in stone (indeed it may come to absolutely nothing, although I highly doubt it), and I am largely speculating about what might happen in the future, but I think it is safe to say that child led learning (that looks entirely different than 'mainstream' learning) will be more difficult to 'justify' to the local government representatives when they come around for their mandatory home visits.

I find the notion of my children studying a curriculum completely baffling. Why would you want your children to learn facts and information that come from limited and biased sources? Why would you want your children memorising information and 'facts' that are at best of date and at worst incorrect? Why would you want them to be basically the same as every other child? Why would you want to risk their mental health and well being as well as their curiosity and enthusiasm? (NB - I am speaking ONLY for myself.)

I am aware that I am using broad strokes when speaking about school and school children.
I am aware that there are many children who love school.
And to that I say, "Thank goodness!".
Please do not think for one second I am hoping to ban schools or discourage those who love it from attending. I most definitely am not.  Each to their own provided there is no actual harm.

What I am doing is defending my right to make different choices, and the rights of my children to follow their interests, talents, skills and hobbies in their own time and in their own way.

Speaking only for my family, we are active, self-motivated learners. Our minds are waiting all the time to glean some nuance we missed before. Or to hear a new word or explore a new idea. Our lifestyle facilitates our learning.

We embrace our lives as a part of the whole 'lesson'. To spend these precious years in a government institution seems like a huge waste of time and opportunity to me. Again, just speaking for myself.

There are many lessons in this experience too I'm sure and I hope we can all explore them together.

Please, when the time comes, stand by me and my family and help us protect our right to learn in a way that is most meaningful to us.

Join the discussion. This affects us all.

Thanks for reading my tired, our of practice ramblings.

N x

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

It's the moments that take your breath away.

Tonight I connected with my children in my favourite way.

We each spent some time reflecting on our day and listening to it from a different perspective. I would love to say we do this every night, but we don't! We often discuss particular events but we rarely talk about our entire day as we did tonight.

Lily came to tell me that she'd let the cat out, locked all the doors, turned off all the lights and folded up her clothes. I must have had the most dramatic change in demeanor because suddenly Lily was beside herself with joy! The feeling that engulfed me when she listed all the things she had just done (as well as being in her pajama's and having brushed her teeth) was one of utter love. I felt cared for, loved, heard and appreciated all at once.

Lily had done all of those jobs, in her own words, "Because I am getting older now and I need to learn to look after myself more." without any prompting at all from me.

My children are asked to help when needed, but are rarely required to do something for me when I ask (under threat or bribe). Lily has simply observed me and listened to my questions if she comes upstairs after I do, and learnt what jobs must be done before coming up to go to bed.

Of course she has!

In my deepest, most secure place I know my children are learning these things all the time, but at a shallower level, I still shit myself regularly that I'm doing this mum thing all wrong!

As Lily and I were talking, we discussed something that had happened when we had guests over this afternoon. Lily, plus 3 other children including Dominik, had been playing on the trampoline when Dominik pushed Lily and she fell into another child.

Lily hit her mouth and a massive meltdown ensued. She screamed at the top of her voice and listeners would have thought she was dying! Dominik simply climbed off the trampoline and said quietly that he was going inside.

I calmly tried to reassure Lily that she was ok and that she could have anything she needed to help her calm down. She was insistent that Dominik had hurt her lip on purpose. She did not comprehend that it was an accident. She assigned blame for her poorly mouth to the push from Dominik. She was inconsolable. :-(

When we talked about this before bed tonight, Lily said that she had acted childishly and that she was sorry for screaming. We decided to risk disturbing Dominik to tell him that we were both very proud of him, that we loved him and that Lily was sorry.

We first checked that all the doors were indeed locked (!), and then knocked on his door. He said we could come in and Lily, calmly and kindly, said she was sorry for what she did and that she knew he did not do it on purpose. He was visibly relieved and thanked Lily for coming to tell him.

Dominik interacted with two young men today, neither of whom are associated with particularly positive memories, and he did it amazingly well. I am so proud. He has had an abnormal sleep pattern again recently and has been really struggling to live with us all (and vice versa) but, the effort he has put in is paying off. I think he has realised, for the time being at least, that he does enjoy life when we spend more time together and that he can exercise some self control if he is able to pay attention.

Lily also played hostess today and loved it! She asked more than once if everyone was having a nice time (asking for a show of hands!), put food on plates and brought almost everything outside, all by herself. She was so proud to have been a help. It was amazing.

Hannon played happily with both of our visitors and didn't eat all the pizza before anyone else had had some! :-D He was also an amazing host. Polite, friendly and fun.

Harriet, and my lovely friend who babysat for me today (hey Sharon!), looked to have had an amazing time together too judging from the pictures! Harriet had looked forward to Sharon and Pepsi arriving all day so was quite happy for me to toddle off to my roller derby course without so much as a backwards glance!

Today I was so blessed.

Good friends. Lovely food. Fresh air. Roller skates. Love. Gratitude. Understanding. Learning. Happiness.

I'm pretty sure I could not ask for more.

Hope you all have a blessed week

N x


PS - UPDATE - Dominik has made some huge developmental leaps as a result of his brushing and movement therapy. For the first time ever he is becoming self-aware. The egocentricity, notable during toddler hood, is finally abating. He is starting to see that he is a part of a system and not alone in this place. He is taking better care of his immediate environment and is being more considerate than I had ever dared to hope for.

Small steps. Kind words. Patience.

Baby-wearing (28months, so not really a baby anymore!) my way through painting my garden furniture and cutting the grass!

UNschooling Life

This past week has been an enlightening experience.

We've felt energised by the warmer temperatures and the first signs of Spring so we've been out of the house more than in it I think. Just amazing. At last!

We've been to a park almost everyday and visited Wrest Park yesterday, (all with the Slackline). We even went swimming today. All 5 of us! It was so fun and it went so well. Proud moments.

One trip however, does stand out because it involved a life changing discussion for us all.

My youngest son and I went to 'town' (rare event) to visit the library and collect my new glasses. The other 3 children stayed at home with their nan so it was a treat to be out, just us two for a change.

We ran our errands and then decided to go to CEX and look at the games because H had some birthday money to spend (from his Dad!). He spent £6.50 on two games and decided to give his change to the homeless man that had asked us for some just before we had entered the shop.

As he walked up to the man to give him his money, a lady walked past and shouted, "Get a f*C^ing job.". I felt so sad and angry and disappointed all at once. My stomach took a nosedive and I felt sick.

After several seconds, I realised that I was truly outraged. That someone could show such little compassion almost floored me. H didn't hear what she had said, but I was upset, and I repeated it to him. He was easily as angry as I was.

This event has led to several discussions over the following days about how this could have happened. When did it happen? Has it always been this way?

We have now discussed it at length, and we are all in agreement that the next time we should witness something like this, we should say something.

It is time to stand up and be heard.

The misfits. The hippies. The carers. The children. All of you (us).

It is incumbent upon us to act now. It is time.

We're not advocating anything other than being compassionate and empathetic during your daily lives. We should all be sharing our goodness and shining our own individual light on dark places and dark people and dark acts. Things have to change.

I have always wanted to be kind but I guess it is presented as something meek and gentle (not very me!), so is consequently seen as a weak characteristic.

I think it is time that 'being kind' was seen as also being a courageous and (sometimes) loud characteristic!

Why not? Why can't we be kind, loudly? Share your good deeds! Spread your fortune and count your blessings! Speak out against injustice. Don't just sign petitions! Use your voice.

Let's face it, we are the peacemakers! I know that it is so difficult to invite conflict into our lives. It is uncomfortable and stressful for us to 'draw attention' to ourselves. I truly understand. But it is time now.  

Has society become so lost that it cannot even recognise kindness anymore? What if it has?

 

The following quote keeps me searching, learning, speaking out and acting.

For me, this is what unschooling is all about. The impromptu lessons and experiences that are immeasurable in their impact.

What happened during these conversations is life long learning.

This week my children and I realised that being kind and empathetic are the lock and key to true happiness.

Sending out lots of love tonight,

N x

PS - A friend shared this with me once and it seems pertinent.

#100daysofhomeed

Just wanted to add some pictures for a change.

Here are our bookcases! I have been thinking a lot about our journey and the prevailing theme is literature.

If you all read together, for pleasure, you can't go wrong.

Harriet's book box.

Lily's/family book shelf

Hannon's book shelf

Natasha's book shelf

And Dominik's to come (of course). :-)

Natasha x

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

An explosion of new learning.

I am astounded by the capacity my children have for learning new skills and developing their personalities.

Dominik has tonight told me how he recently advocated for a friend in need. He described himself using, 'intellectual language' and said that although he had been nervous and had lisped, he felt as if he had communicated his points really well. He felt that the person to whom he had spoken had heard him and was considering his/his friends position.

He followed that up with throwing around the bottom halves of his crutches (that have only previously been used as weapons!) in the manner of a juggler/baton twirler. He was surprisingly good! He could do a lot of stunts all of which he had taught himself. Now in search of juggling pins!

I think that perhaps the most beautiful thing he told me was that he actively tries to make me laugh! He said I have a very serious face and that it transforms instantly when I laugh. I told him I thought of myself as a fun person...and he laughed! We are all going to have more fun and laugh even more in 2017, I know it.

Since the year began, Harriet has said; bed, poo, boo, up and hot! Incredible changes happening for her too, Her self-awareness, empathy (yes, she really is empathetic at 23 months old so it must be possible), joy and love, know no bounds. She can crack any silence with a 'yeah' and she can soothe any tears with her small hug and gentle pat on the back.

Lily is now actively learning to skate backwards and she was joined today at the roller skating disco by her two cousins (and step-cousin?!) which meant the world to her. She was patient, kind and fun even when confronted with the fact that she was now effectively a lone skater, because I wanted to spend time with the (as yet) non-skaters. Cheer leading reconvened today too and given that Lily has been under weather and not sleeping, she met and exceeded her own expectations with her management of the whole day. So happy for her.

Hannon, I am finally going to submit, is Autistic too. He has been stimming a lot. He has been very insular and hyper-focused too. I have always known he has an ASD but right now, it is challenging for him to manage. I think that having acknowledged it is there, he is going to manage better though...as we all will I'm sure. Bless him. So emotional and confused. He is currently dreading returning to Cubs due to an incident and series of events that I have yet to share here so that is undoubtedly contributing to his sensitive state. He also still does not know what he would like to try this term...argh! Oh, and he is very focused on food.

And finally me! So far this year, I have begun adopting a paleo eating style, I've picked a yoga class to attend at last! I've begun my first cross stitch. I've picked up my Spanish. I've started having counselling, I am also researching the following subjects - 'screen time', violent and fantasy based play and cooperations vs competition.

Oh, and the children and I have started to plan some trips! A new soft-play, a climbing taster session, a shooting taster and a potential weekly Spanish meet with a Peruvian lady are all in the planning.

We've had a quiet couple of months, which we definitely needed after the whirlwind that was 2016, but now that is done, we're good to go.

N x

Problems of an Autist!

Today, Dominik saw the physiotherapist for a progress report and he has been discharged! 

This is as a direct result of his dedication and resolve. The improvement seen by us (and confirmed by Sebastian) is remarkable. He has a normal bend at his ankle already (the surgeon was worried that he would not even be able to get it to 90 degrees, let alone exceed it!). I am so thrilled for him. He is elated. Genuinely happy with a real world achievement. Properly proud of himself. For a person with PDA this is a massive accomplishment. 

He has finally dedicated himself to something and it has PAID OFF! No begging. No bribing. No threatening. Not even any nagging! 

He is finally seeing what I have known was there all along...huge potential. He told me himself that he has had a massive confidence boost. 

This operation was a catalyst for him even though I was so angry with myself for letting it happen. Ultimately it seems that it was for the best. 

It has provided the ideal test for Dominik. His well-being and quality of life were truly on the line and he rose to the challenge in a super-human way.

Keep the faith lovelies. <3

And now, on to Autist problems!

Because Dominik has now recovered (and exceeded expectations!), I need to book our rifle shooting classes! 

(I am sure I can almost hear the hysterical laughter coming from fellow PDA warriors!)

In writing the email (because I don't do phone calls) I became acutely aware of the reality of Dominik and people and ammunition all in the same place in real life. I'll be honest here, I'd have chosen pretty much any other sport/hobby/activity first. 

I intended to write a standard enquiry email but it became what I am sharing below. It includes some pertinent points and I'm proud of my advocacy...I think. 

And therein lies the Autist problem...was I too honest? 

Is writing an email like this a good idea? 

Have I prejudiced them from the outset? 

Should I have let him try? 

Urgh. This is so confusing for me and I have no idea if it would be confusing for a neurotypical parent! 

Here's the email

"Hi, 

My names Natasha.

I would like to bring my 12 year old son along to have a taster session with a view to both of us taking beginner classes.

I think it would be £60 each (plus the £5 each for safety and taster?) is this right?

My son has special needs (ASD) so I am joining him as his carer. I do not however envisage any problems outside of over-enthusiasm and possibly over-confidence!

He has just had an operation on both of his Achilles Tendons and as a result, can now stand properly. on his flat feet for the first time since he was around 8 year old. 

His amazing management of the surgery and his recovery are the main reason we are coming. It is the only hobby he is willing to try and I’d love for this to be a success.

He is home educated so is used to being self-directed. His only other 'class' has been parkour (free-running) and he was forced to stop that due to his shortened Achilles tendons which meant he could not balance well enough to progress.

He is a massive fan of weapons in general as a result of his love for COD games and other first person shooters.

To give you an idea of his dedication to the subject, one of his last full days out was to Wrest Park for a St George’s Day event. He was able to identify pretty much every weapon he saw in each 'zone'. It was so much fun and he impressed those who bothered to actually listen to what he was saying/asking.

Please confirm that it would be ok for us to come along, or if you think there may be a different way to give him (us) a taster, I’m happy to hear any suggestions?

Finally, would you please confirm/suggest dates as soon as possible so I can plan things accordingly.

I look forward to hearing from you,

Happy New Year,

Natasha"

Did I over share? Did I advocate? I don't know but I'm looking forward to finding out.

In other news, Harriet is still a climber and will be visiting a local climbing centre this month, Hannon cannot decide on any new classes this term and has refused climbing, kayaking (because of the day of the week) and archery. Lily is devoted to roller skating and is improving fast. We have a bet on now that if she can beat me in a race before Easter she can have a new pair of skates of her choice. I cannot wait to see her skills develop. Lily is also learning Spanish and will continue with Beavers and Cheer-leading. 

As for me, I'm itching to begin a career. I just cannot decide which area I want to focus on. I am torn between gaining a TEFL qualification (so we can travel again) and following my heart towards working with families and children and young people. Such a big choice...could I manage both?!

Enough from me. There is a sleep-over here tonight and as you can imagine, there is not going to be any sleep happening!

Happy New Year. 

May 2017 being you joy, health and love.

N x

PS - 

It's here again!

In what seems like the blink of an eye, it's Christmas time again. This is my third Christmas as a blogger! Where did that time go?

So, this year, dare I say it, it almost feels calm!

None of my children have asked for very much this year and I think this has had a large part to play in alleviating the usual stresses! We are all very excited and have even agreed that we will put up our decorations a tad earlier than usual. Cannot wait til the weekend!

Dominik, of course, has had his main present already and given that he hasn't asked for anything else, the rest will be sure to be a pleasant surprise.

I should probably fill you in on life after surgery! Dominik had his casts removed last week after what felt the longest six weeks of our lives! He hated using the commode almost as much as I hated him using it to be honest! So glad that is behind us now.

The first day he was incredibly nervous...refusing to put his feet down and insisting on using the wheelchair after a week of not using it at all! We had booked to go and see Fantastic Beasts that night and I optimistically, didn't expect to be using the chair but we had to in the end!

The second day he hobbled around with his crutches mostly using them as weapons, which was a bit trying.

But, on the third day, he put them down and began to walk unaided! He is waddling (a little like a penguin) and refusing to bend his knees but the surgeon assured us that within three months he would be much more confident and competent. I guess the irony is that he is point blank refusing to stand up on his toes! He simply will not do it. Hope that's a good sign.

We saw the neurodevelopmental therapist after the casts were off too to check on the progress of his retained reflexes and that was also great news. His pupils are showing almost no stress response now and he was able to do the exercises far more easily than ever before. His back has now loosened up which makes every single movement easier and far less stressful for his entire body. We have been advised to seek a physiotherapist (not provided by the hospital, urgh) and a cranial osteopath so the pathway to wellness continues.

Back to Christmas!

Three years ago when I first began writing this blog, I wrote a long and detailed post about all the things I put into place around this time of year to make life less stressful and anxiety inducing for Dominik but here we are, three years on, and those measures, whilst still being on stand by, are no longer essential.

I am going to copy and paste some of my tips here from the original article in case they are of use to any new readers.

"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?) 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 your 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 is even worse.

Bribery & Coercion

I think it is all too common that parents begin using Santa (and presents) as a 'carrot/stick' once Christmas time 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. A trip such as this can take days to wind down from even if it goes well. If it goes badly the guilt and shame and self-reproach from us perfectionists is almost too much to bare.

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, and the pressure to like them.

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 and frequent transitions.

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 have added a few tips and tweaked this a little but it is basically the same as it was in 2014.

I'd like to take this opportunity to wish you all a happy, fun and joyful Christmas.

Much Love, thanks for reading,

N x

The operation and its aftermath

Dominik had his Achilles tendon lengthening surgery on Monday.

Time has flown by and I cannot believe it's finally done.

Dominik has also been to see Bob Allen for a third time to check on his neurodevelopmental progress.

So, Bob Allen...well, we learned that Dominik has developed (?) his Moro reflex a significant percentage already. The difference is clear to see for those of us who know him well. Some changes to note: he has spent very little time gaming, he has spent a lot of time making new friends and communicating with his peers, he has been experiencing friendships and is being exposed to many variants of family life for the first time ever, he is speaking more slowly, he is more attentive and, perhaps, most importantly for those of us who live with him, he is communicating his needs far more clearly thereby avoiding most meltdown situations.

Other than being slightly edgy, he did not have any significant difficulties in the lead up to the operation. His pre-op appointment was uneventful although it did highlight his Autism. During the appointment, we saw the play therapy lady and a Jr Dr. He spoke in a mumble. He answered all their questions whilst looking only at me. He stimmed. He span on the spinning chair almost continuously. He fiddled with everything in sight. He didn't have any questions and declared that I had told him everything already! He loved the teenage gaming room in the ward and was almost excited to have some time away from home.

I think it is worth mentioning that his siblings have been very gentle with him. They understand how scary all this is and they want to make his days as simple as possible. Last week, for the first time in months, Hannon played with him for the whole afternoon. Earlier last week he spent a significant portion of the day with Lily and Harriet and I spent some of last Friday with him. Dominik has been mostly nocturnal again though so we must take that into account I guess. Lily and Hannon wrote him an adorable card and I know he appreciated their care and concern.

We are now day four post-op and I am so thrilled with how things have gone.

He has had painkillers on three occasions since he came home. He has been having fun trying to navigate the house in his wheelchair (even thought it is not self-propelling). He has come to the table for meals. He is mindful of how long he is sitting for and happily asks for help to elevate his legs when he feels it is necessary. He is dealing with the 'pee pot' and his commode with dignity and maturity. He is excited by the thought of being able to walk 'properly' when the time comes.

We had an emotional morning before the operation as there was obviously some waiting involved before he was called down to theatre. He finally went down at midday. He walked there without issue and let them insert the cannula and wire him up without complaint, although he HATED the blood pressure cuff! He went under quickly and smoothly.

He was a little longer in recovery than I was expecting which was very scary! I was expecting him back at 1.30pm and was finally allowed to collect him at 4pm! Not the nicest experience that's for sure.

He decided that he was confident to stay overnight in the hospital by himself which was astounding to me. In fact, truth be told, he was far more confident of his ability to manage than I was! He didn't even flinch at the thought and when I arrived early the next morning, he was beaming and very ready to leave!

We saw the Dr and received our instructions for care of his cast and were ready to come home by 11am. We did hit a snag here when I couldn't get him in the car. It was the only time he panicked and shed a few tears.

I ended up leaving him there and going to collect the wheelchair and commode from the Red Cross and ordering a wheelchair accessible taxi to collect him.

Once we were home, well, it has been plain sailing.

All in all, my young man has exceeded all expectations (even his own) and has his gaze fixed firmly on the end result.

N x

Pretty much terrified at all times!

So, I definitely owe myself (and you) a blog post.

For me, time is a little harder to come by these days because Harriet is exploring and generally being an 18 month old!

She is into everything. If you turn around for one second she is into something or, more often than not, on to something! Her ability to climb continues unabated even with the odd tumble.

The garden table, the kitchen table, the kitchen worktops, the bunk beds, the freezer, the chest of drawers, and last but not by no means least, the side of the bath! Nowhere is safe.

These experiences are all equally horrifying and inspiring. Not a single time do I not panic but, barring two occasions that spring to mind, she very rarely slips/falls. She is an adept climber.

Harriet isn't saying any words yet which I am grateful for in some ways but, surprise, surprise, in others, I'm not.

I swear that being a parent is basically being equal parts impressed and terrified at pretty much all times.

Hannon is collaborating on a few games with a new friend. They are beta testing one another's games, they are creating artwork for one another and Hannon has even begun to experiment with voice acting, inserting 'easter eggs', making cut scenes and is just today working on soundtracks! It is so impressive, and yet utterly terrifying at the same time.

Lily is asking very grown up questions all of a sudden. She is still growing at a rate of knots. She has been poorly too and a bit clumsy and in the wars.  It seems many of her changes are to do with her physical person and her level of maturity right now.

But, that is not to say that she isn't taking part in some activities! We walked the whole of Bedford, and learnt some of its history doing a treasure hunt from Treasure Trails (highly recommend), she was boosted over the barrier around our local 'music in the park' event by my mum (!!!) so she could see what it looked like inside and to hear one of her favourite songs played live and she has also managed a full 3 hours at a science event this month.

Her capacity for 'life' is improving all the time and Lily has far fewer meltdowns right now. It is such a relief for us both really and a well-deserved break from her usual level of stress.

On to Dominik! His is perhaps the most surprising of tales! We have now been therapeutically brushing for a fair while. The biggest difference on the surface is the amount of time he is spending actively playing games compared to doing other things. The balance is heavily in favour of editing, dubbing and drawing comics. He got through his birthday without much incidence this year but it was the most low key it has ever been. Not sure he would choose for it to be that low key again, but we might have found a balance for next year!

Dominik has also experienced his first breakup with his American girlfriend, He was definitely thrown by it but recovered quickly. His emotional state in general has been superb. He is still developmentally behind his peer group, but he has gained some ground for sure.

Dominik is also far more able to express himself. He is achieving a level of clarity (and honesty) never before seen. This alone has made a huge difference to his self-esteem and to his level of active co-operation.

He has a date for his operation (yes, we have been advised by several different professionals that we cannot avoid the tendon surgery for his tiptoe walking now) and whilst he is scared, he is also managing well. He is willing to talk about it and he is helping to plan what we will do/what he will want to do during his recovery. It was at this point during the appointment with the surgeon, when he realised that he would have a legitimate reason to stay in bed and literally do nothing! That was when he accepted the operation without a fuss! I must admit, I heaved a huge sigh of relief that he was not a more active, outdoorsy type boy, or else my house would be like living with a time bomb right now!

Dominik has also taken his relative successes in the voice acting and comic dubbing world to a whole new level! He was stressed yesterday about something (and the reason I could tell was because he was being particularly controlling and rude to me) and so I asked him what was wrong (during our evening brushing session). He said that he had taken on several projects and was struggling to manage them. He told me that one of them involved 20 different voice actors! I laughed out loud! My PDA son was trying to project manage 20 people! I have pretty much always known that he works best when he is in charge...but did I ever imagine that he would be voluntarily managing 20 people from all over the world by the age of 12?! Never! He himself has now realised that this is a mammoth task! He has learnt from it and I think he will be more careful what he takes on from now on.
His personality is equal parts terrifying and utterly impressive.

I am sure there is more to say but I am going to go to bed now. I am exhausted and Dominik and I are going to Windsor for our second appointment tomorrow and I simply hate driving there so I must sleep.

Thanks for reading. I hope your summer is as lovely as ours.

N x

The little things.

A few little things made me smile today and oh man, did I need to!

I just tucked everyone into bed and I wanted to share my joy at our achievement in this area! I'm sure all parents can empathise with traumatic bedtimes.

I used to sleep with Hannon and Lily in my bedroom. They used to have no set bedtime. They used to be awake until I could not be nice any longer! They seriously used to test my patience in the truest sense of the phrase and it was tough for me. I was a newly single mother of three, with two high needs children, trying to 'traditionally' home school a PDA child (!!!!) and getting used to a new-ish life living in Bedford, alone, dependent upon social security benefits.

So, I had to find a solution for bedtime before I lost my marbles!

Between us, we negotiated a new routine. Everyone in their own bedrooms. No electronics after 10pm. Read/play until they were tired if needed.

I set a new limit on food at bedtime too. I simply refused to make anything else after 9pm. That was when I 'clocked off' from the kitchen.

I think that because we came to this arrangement together, I was hopeful that it would work for everyone and give me back some of my much needed mental powers!

There were a few blips. Hannon and Lily shared a room for a while and then Hannon decided he wanted his privacy. Fair enough. We transitioned Lily into her own room over a week, reminding her every day it was happening and we hoped for the best! Then she used to sneak in her tablet for a bit (until Hannon caught her) but I think that was to ease in the change in her own way! No big deal.

Well, she doesn't even think about doing that now and she did so great!

They now both sleep in their own rooms and are in bed by 10pm.
No electronics.
No food.
No fighting.
No exhausted, grumpy mum!
Yay!

All consensual. All peaceful. All happy.

Hannon is now reading his sixth manga series (don't even ask how much this is costing because it is worth every penny) and has probably read them all several times over.

Lily is reading whatever she can get her hands on but mostly manga, rhyming stories and poems that are familiar.

Harriet goes to sleep whenever she damn well pleases!!! Hahahaha! Yup, the baby has no idea that she needs to sleep. She is learning so much (and loving doing so) that she simply thinks that she has no time to sleep! Sigh. It is tiring but so worth it. Today she spotted a bumble bee in a book and screamed because she clearly recognised that she had seen one earlier in the day. We had chased one through the flowers in the garden. She can now sign 'milk', 'dog', 'finished' and 'monkey'. She is confident, beautiful, smart and completely charming! But, I'm biased of course.

And last but by no means least, Dominik.

Dominik has found new life since we began brushing (to release all of his retained infant reflexes). He is currently focused on his comic dubbing (and some singing) and is even auditioning for parts in other people's comic dubs.

He has wowed me with his ability to learn new skills. He has learnt to use programmes such as: Audacity, Synthesia, Movie Maker, Paint Tool Psi (sp?), Dropbox and probably some more I've forgotten, in a little over a month!

He is researching information about microphones and sound proofing and is asking for equipment for his not-too-distant birthday. He is truly happy and satisfied. He is drawing on a graphics tablet that Lily let him have (she really did!) and improving so fast. He is barely gaming at all. He is making new friends daily, He has stopped obsessing over how many views his videos are getting on YouTube. He is asking about punctuation! He is also teaching himself how to play the keyboard! He is just enjoying life so much. I am not sure I ever thought I would see him like this. Melts me.

And what about me I hear you ask!

Well, I've been shit! I know!! How is that possible?

I think what happened is that life got a bit 'quieter' (with all the kids doing so well) and then my world came into focus for the first time in a very long while.

I've struggled to reconcile being alone if I'm being completely honest with myself. I am angry and disappointed that those who undertook this journey with me are no longer there beside me.

I am bereft at the reality that my own mother is not offering me some extra support right now given that she was with me during two recent Dr's appointments where they both said that ideally, I should be in hospital.

However, I've started to feel a little better and am slowly leaving the fog behind. That is mostly because of my smashing friends and my growing support network.

Ok, I know these groups can't do anything practical on the kind of scale that I actually desperately need and want (a few days off), but they can listen, console, empathise, advise and perhaps most importantly, make me laugh. And that is what they have all done in their own ways.

It really is the little things that cumulatively make the most difference in normal, daily life.

No, my mum has not offered to give me a few nights off (shame really given that I have had only 7 in 12 years) but, my days have become less dark because there really are people out there who do care about me.

I know there are, because they tell me so.

N x

Such good times!

It is important to write about the good times.

The past weeks have been so full of good times that I've not really had much time to take stock.

Tonight I did though.

I realised we have such a roll going right now that it is heart-warming and inspirational.

We have what I can only describe as a 'circle of happiness'. It works very simply....always be kind. That's it. If we are kinder to each other, we genuinely and actively live in a way that is kinder to ourselves. Happy people are kind people...don't you think? Are you more or less likely to do kind deeds if you are happy: or sad: or angry: or simply disinterested? You see my point.

Happiness breeds happiness if we all act on it. Easy.

Here's some happy for you!


Dominik has had an unprecedented number of hits on his YouTube channel and he is simply happier than I have EVER seen him before. He has over 100 subscribers now. He has had over 35,000 views of one particular video (which is not even a gaming video!).

It is lovely to see his joy, ease, calm, and more joy!

He now has two people collaborating with him too! They both lives overseas so collaboration presents some challenges. Plus, his collaboration tool kit is non existent. However, Dominik has just completed his first ever international collaboration. At 11 years old! He did it all with masses of support. He is so proud of himself. He is loving what he is doing. He is genuinely feeling inspired and motivated. He even began drawing on the pc today and made his first ever animation. It was excellent. I'll see if he wants to upload it I think.  :-)

He has also -
joined us on holiday
been to a Vintage Gaming Fair
been for two picnics
been to the cinema
been to a local fete on a sweltering day
been to Legoland
and finally met up with friends at a COUNTRY PARK!!!!

This is just the last three weeks. It is stunning in it's incessantness (is that a word...don't think so). Just exhilarating to be a part of.

Hannon, in addition to the above, has just been to his first ever camp. I honestly never thought this would happen. He has never spent one night away from me voluntarily. Not even to my mum's house which is less that 5 minutes away. This is a major achievement for Hannon. And he loved it. Bonus! He cannot wait to do one next month. He is happy and motivated like Dominik. What more can you ask?

Lily has also done all of the above, and stayed at my mum's house for two nights in a row (one was a sleepover with her two younger cousins) so as Dominik, Harriet and I could be alone (because it basically never happens). How thoughtful and kind of my incredibly sensitive, intuitive little girl. Her moods have wobbled at the extreme ends of the spectrum as a result of how intensely she has been pushing herself but I know she happier now than she was at the start of the week so that's what counts. She is happier. She is loving having her own laptop so she can play pc Minecraft. She has been using scratch to make animations which are really funny and so well drawn. I should ask Lily to upload too I think. That will make her happier too.

Happiness is simply contagious. There is a caveat though...you just have to actually be happy for it to work. If you are not being honest with yourself about what you want and how best to achieve it, you can't be truly happy and therefore the happiness will not spread as easily.

Harriet is just happy. (She is also still a mountaineer.) She graduated to climbing ladders in parks this week! She is calling me now. She is loving learning how to sign. We are doing animals this week and we've found that dolphins are easily signed and remembered after she saw a video of them. She is so independent and headstrong (yup, another one) and so much fun. She receives so much love from her siblings and I think she brings it to herself simply by just 'being'. We can learn a lot from babies. They are so pure. She is just one tiny bundle of love.

Thanks for reading.

N x