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

Some of our unschooling wins!

I thought it was about time I mentioned a few recent unschooling wins!

Lily is now reading almost fluently and loving her new-found freedom. Not only is she better able to communicate with and understand the world around her, she is also brimming with a new level of confidence in her own ability to learn!

She has gone from reading simple children's bedtime stories, to young adult manga in a matter of weeks. She has revolutionised her own bedtimes in the process. She is now getting in to bed without any electronic media and she is reading (and sometimes drawing) until she feels tired. This doesn't mean we are without incident completely, every night, but it does mean it is far more manageable and that Lily is far calmer and happier.

We have talked again bedtimes as a family, but we are all agreed that they are working really well as they are and we all feel that we are benefiting from them in a positive way. This means we maintain the status quo. Yay!

Hannon and Lily get into bed at 9pm, with all electronics gone by 10pm and then reading for as long as you wish. Dominik stops gaming by 11pm and is in bed with his PS4 off by 12. He has chosen to have his tablet, as he will only read online. He is currently immersed in Undertale fan comics (more on this later).

Lily has also learnt to write by hand. This is something that has never come naturally to the boys, but Lily has taken to it like a duck to water. The boys are happier to type. Full stop. They do not have the skills at the moment to hold a pencil comfortably so typing is far quicker and feels nicer. They can both spell well and Dominik requested that I buy an Usborne book on spelling, punctuation, grammar etc. so he is actively learning some grammar! :-) Again though, Lily has picked up grammar very easily. In fact, I'm not sure we have even talked to each other about it. She may have heard me talking about it with the boys though. Either way, she rocks at punctuation! She wrote a note for my mum this week and it was simply beautiful. I will try and remember to upload a picture of it if that is ok with them. The envelope was even addressed - Beryl/Nanny - how lovely is that?

Lily has begun drawing her own little animations on her white board (her favourite and most used Christmas present by far!) almost continuously. She usually draws boys and girls and love hearts etc, but it is fabulous work.

She has been enjoying parkour and is a natural when she actually tries to be present during the lessons! Her physical abilities are extraordinary. She has also picked up some early tennis skills this week too.

I'm sure I could go on but I must tell you about the others.

Hannon has now learnt to use a second online animation programme. He is putting together little animations as well as making games. He is trying to perfect his YouTube intro at the moment. He has also made a few vlogs which seem to get more views than his gaming, much to his surprise!

Hannon has had a friend here for a sleepover this week and it went so well! There are usually a few skirmishes during a visit but this time, not one! Hannon was kind, thoughtful and generous without even a second thought. He allowed our guest to use his computer pretty much continuously whilst he was here. He said it was because his friend doesn't get to use one otherwise, as he only has gaming consoles. This made me think about how important it is that gaming consoles do not forever overshadow personal computers. We have found that having the ability to type on a keyboard makes a huge difference to communication skills and especially spelling abillity. (Google autofil is an issue though so best to turn that off!!) Lily does not have access to a keyboard and is using handwriting. I guess it just goes to show that where there is a will, there is a way.

Today Hannon typed 50 messages to Dominik during a livestream! 50 messages! He even typed one in the font 'Windings' because he thought it would be funny! He even searched for a translator to do it for him!!! Hilarious. Dominik loved it too.

Hannon likes to make and solve puzzles (they all do actually..hmmm, WE all do!) and we were gifted a 'Monster Book of Monsters' which was great for puzzle solving! If you aren't familiar with it, it is a book that featured in the Harry Potter book series that needed to be stroked in order for it to be opened. Well, this one needs a four part code to open it or it gobbles and growls at you with a cute little mouth. They all had marvellous fun setting new codes and trying to crack them! It was brilliant! Every time one of them cracked a code they would open the book, take out what was in the secret compartment, and then replace it with their own (by now) not so secret stuff and say, "This is my book now", to which I would reply, "No it isn't, it is still Hannon's.". They would then say, "But it can't be, only I know the code, so it's now mine!". How could you argue with that logic? So, the book currently belongs to the person who last set the code!

Hannon has been helping around the house completely voluntarily. He is also helping to choose meals with me every week because he is so fussy it is causing me too much stress now. He is helping me choose foods for him that he will eat. Today he ate....wait for it......KIMCHI!!! Yes, my 9 year old boy ate kimchi and asked for more when he was finished. I am so proud of him for trying it. I lived in South Korea when I was 21 and refused to even try it! He is amazing.

Ok...move on Natasha.

On to Dominik. He has been reducing his competitive gaming time gradually. He is realising what we already know and that is that he is far nicer to be around when he doesn't do it at all. I know. It truly sucks. He is gutted at the result of our experiment. I think we all are actually. We all want him to be able to play the games he adores but we have all seen that without them, he can function far easier. We think it is simply over-stimulation. He gets so agitated that he cannot manage anything else. Not even a conversation some days. He is playing fewer games and he is spending more time with me. He is also spending more time with Hannon, which Hannon loves.

He has continued with his physical exercises too and says that he hopes to return to parkour one day and to take up archery with Hannon and I. He is optimistic about the impending neuro-developmental therapy and is eager to get on with it.

What an incredible change. He is actually taking charge of his own well-being in a big way. He is embracing changes to himself like never before. I have talked to him about the possibility that his behaviour may change once he begins the therapy and he seems to understand that too. I am so proud of the leaps he is taking. He is also monitoring his diet and getting dressed and undressed at the end of each day. Not made much progress with bathing nor teeth brushing but baby steps are good.

Oh, yes! The Undertale fan comics! Dominik has begun writing Undertale (a new-ish game following on from FNAF) fan stories! It is called 'fanfiction' and he loves it! He has written at least two of his own so far. He brought one to me to read and I began talking to him about grammar and punctuation and the importance of structure for your story-telling. At first he was frustrated and cross and then he listened to me read his story without any punctuation and then again, but with some punctuation.

He immediately identified the difference and realised that his lack of 'theory of mind' was inhibiting him. He had assumed we would all read it how he does completely forgetting that we are NOT him!

Once I physically showed him what would happen to the reader, he understood immediately. Yay!

Just proves that practical, one to one support is priceless.
Especially with children who have communication difficulties.

NB - That ('communication difficulties') is NOT just a phrase for SEN advocates to bandy about! It actually means something! You must be practical in your teaching! It must be real! NOT realistic! It cannot be learnt via a make believe story, at least not to any real depth of understanding in my humble opinion. It MUST happen TO THEM. Not AT THEM. I am speaking from experience!

Domink has been taking strides I was unsure I would see.

And I suppose I should include Harriet?

Oh, ok then.

She is still, completely lovely. Today we had a baby visitor and she simply hugged and kissed him, and hugged and kissed him for about the first ten minutes of his visit. She just wanted to love him. It was quite obsessive and she was doing it with no prompting at all. It was beautiful. She's an empath of the highest order! You could see him visibly start to relax even in this new, strange, noisy environment. He left his mum without a glance and began smiling and playing happily as soon as she was done.

She is also walking! Yay! Oh man, she took a few steps in the week before Easter weekend and then on Easter Sunday she just walked! Over 50% of that day, she was on her feet. She was so proud and excited that she had finally got the hang of it! She is now only walking. Within two weeks she has gone from crawling to only walking. The downside is that she now does not want to go to sleep. Ever!! It is tiring me out a little but, meh, it'll pass and she is so happy I don't care! Today we went for a little walk to the end of the road and last week she walked around her first park, choosing her rides and her explorations. Harriet is truly content and happy with her life right now.

Her comprehension is excellent. There are very few daily routines that she doesn't comprehend now. She can communicate what she wants very effectively too. She rarely screams for attention but she does 'tantrum' if she doesn't get her way. I am hoping this will get better when she truly understands that I will let her do anything that does not pose a significant risk to her or us (or the cat)!

Harriet is a blessing as I always knew she would be. There is no love like the love from Harriet.

Ok, that's enough.

I'm exhausted and I want to snuggle with everyone before they get to sleep!

Love to you all from our unschooling bubble.

N x