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! 

 

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!

#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

Christmastime!

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

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

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

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

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

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

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

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

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

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

Merry Christmas & Happy New Year everyone.

On to 2016!

N x

Building the New.

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

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

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

Enjoy!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

N x PS - I did my hair!

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

Worth sharing. <3

"What’s in a name?

PDA - Permanent Demand Anxiety?

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

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

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

And the thing I find most difficult to cope with is the fact that she is hard-wired for this anxiety. She will never be without it. My job is to help her find ways to cope with the anxiety, reduce it and not let it control her. I monitor and reduce the demands when I can or when I need to so that she has as much time as possible where her stress levels are low enough for her to think clearly and practice skills she will need in the future, and to enjoy her childhood (or at least not beg me to kill her because life feels unbearable).

I don't sanction or remove privileges when she has violent outbursts because I understand they are driven by overwhelming anxiety. And every single time it happens she has been mortified and apologised afterwards. She has frequently asked me "How can you love me when I am so horrible?" My biggest reassurance comes not when she tells me that she loves me, but when she tells me she knows I love her.

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

Mum of Poppy."

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!