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! 

 

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

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

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

Responsibility.

I've been composing and erasing this blog post for about two weeks now and it just hasn't really come together at all so, I'm just going to type and see what happens.

The second and third month of this year were shockingly stressful. I don't like to write about my life when it is going off course because I try to be positive and uplifting. I cannot write about anything other than what is actually going on in our real life either so consequently, when I don't write, it's because things are shit.

Here's a brief synopsis of what happened -

 - My car died a death.
 - My daughter was refused DLA because our incompetent Dr lost the form he was meant to complete and return on our behalf.
 - My son has seen a private podiatrist who recommended an urgent referral to an orthopaedic surgeon with regard to his tip-toe walking. This has still not happened as I type.
 - The stress of the potential surgery has sent my son into anxiety overdrive.
 - My daughter has been without her usual activities due to a complete lack of funds so has been equally as anxious.
  - Baby has started walking and is getting 8 (yes, at once) new teeth so is not sleeping...at all. Ever. (Well, obviously not, but you know what I mean.)

I think that is about it but it was more than my Aspie self could manage.

It got me thinking about responsibility.

Sometimes it all just overwhelms me.

The very idea (reality) that I have four little people who rely solely on me for everything in their lives is just staggering and terrifying. When life takes unplanned turns I feel so out of control and panicked that I simply freeze. I just cannot function with any real fluidity. I am normally organised, present, confident, open, engaged and happy. But when I feel out of control, I am distracted, confused, sad, angry, impatient and detached.

The kids and I have a very open relationship so they are aware of all the things that are going wrong but that probably doesn't help when I am once again answering the question, "What's for dinner?", with "I don't know. I can't think about it right now."

As it stands, the DLA for my daughter has been reinstated. Phew.
The car has been scrapped and replaced. Phew.
The baby is beginning to calm down and isn't quite so keen to be on her feet 24/7 exploring her new world of freedom. Phew.

So, that just leaves the potential surgery for Dominik. Well, I took a step back, thanks once again to my guardian angel friend, Felicity, and I don't think surgery is in Dominik's best interests after all.

Felicity's timing is nothing short of miraculous. We don't speak that often and we see each other even less, but when we do make contact, the Earth moves and my life, and the lives of my children, change for the better.

I spoke to Felicity this weekend and began to tell her about the nightmare that has been trying to get seen by said surgeon and she immediately said, "Stop. No." I was relieved when she did because I knew that meant she had a plan! Thank the universe!!! This responsibility was going to be shared. Hallelujah!

I was so nervous about the surgery route anyway (because it goes against everything I believe in in terms of health and well being) and if anyone would know of a better alternative solution (permanent solution, not temporary, surface level, band aid), it was Felicity.

Now, back in 2012, I know she talked to me about what we came to discuss on Saturday, but it had slipped from my mind. It happens. I'm not perfect. It is back in there now though and I'm ready to tackle it! As is Dominik for that matter (which is something else Felicity and I discussed at length).

The alternative to surgery is something that goes by several names, but the most common I have found is, retained infant/neonatal reflex therapy.

It is a lot of information to take in so I am now going to link you to (and quote from) what I found to be the most helpful webpages.

First, a visual, for any Aspie mums like me who need a good visual synopsis before they begin!

Here is the Wikipedia page.

"Primitive reflexes are reflex actions originating in the central nervous system that are exhibited by normal infants, but not neurologically intact adults, in response to particular stimuli. These reflexes are absent due to the development of the frontal lobes as a child transitions normally into child development. These primitive reflexes are also called infantile, infant or newborn reflexes."

So, that is what they are.

Here is an amazing summary from a lady called Sue Hyland. I honestly did not find a better summary than this after many hours of research. 

I am going to simply copy and paste the sections that are most relevant to us. Please do visit her website linked above for the full text. It is brilliant. 

"Moro Reflex

Sudden head movements on a vertical plane, that is forward and backward, will initiate the Moro reaction. This reaction is a rapid extension of the limbs, with a big inhalation of breath, followed by contraction of the limbs and a cry. This reaction is initiated by the Moro reflex and is perfectly normal from about 9 weeks after conception to about 12 weeks after birth. It is a reaction to potential danger and occurs as a result of both nerve/muscle stimulation and chemical release."

...

"Should this reflex reaction be retained after it’s normal time of inhibition then not only willunwanted muscular reactions occur but so will the release of the chemicals, every time the head is jerked backwards or there is a sudden visual stimuli or unexpected loud noise. Obviously these will sometimes auger danger, when a full blown flight or fight response is required, but frequently they do not. "

...

"3 or more of the following are the kinds of behaviour which suggest a retained Moro:

Mood swings

Unexpected sudden changes of behaviour

Aggressive outbursts

Withdrawn timidity (either of the last two can exist as major characteristics or they can alternate)

Tendency to observe others rather than join in play

Craving for sweet things

Snacking, inability to eat a whole meal

Dislike of rough and tumble

Dislike of fairground rides

Dislike of bright lights, headaches

Dislike of wind in face, water in face

Panic attacks

Distractibility

Copying difficulties

Perceptual difficulties both visual and auditory

Nervousness

Need to be in control

Dislike of change

Dislike of loud noise

Over sensitivity to particular frequencies of sounds

Over sensitivity to textures, labels etc

Sensitivity to a range of high frequencies normally outside human hearing (so that cars can be heard miles away, lift mechanics emitting a high pitch whistle)"

So, that is just the first reflex in the list and as I continued to read them, light bulbs were switching on all over my head.

Here is just one more, perhaps the most relevant for us.

"The Grasping Reflexes

The Grasping Reflexes develop and inhibit at about the same time as the Moro, which in itself is really a grasping reflex, and can be divided into the Palmar, Plantar, Rooting and Infantile Suck Reflexes. They are therefore frequently found if the Moro is retained, usually all being present."

...

"3 or more of the following would lead you to suspect retention of these reflexes:

Poor pincer grip between thumb and forefinger
Immature pencil grip
Over sensitivity on the palms and bottom of feet, very ticklish
Poor knife and fork grasp and control
Difficulty with cup handles
Poor running skills
Complaints that shoes hurt especially over toes
Tripping, falling
Poor saliva control, dribbling, frothing at mouth corners, spitting whilst speaking
Over sensitivity around and in the mouth
Messy eating
Dislike of certain textures of foods
Tendency to suck rather than chew
Noisy eating
Inability to close mouth on eating
Narrow high arch to Palate
Poor tooth alignment and the need for orthodontic work
Poor control of mouth for speech
Poor co-ordination of breathing and speech
Retained thumb, jumper, pencil, hair sucking
Poor bladder control
Possible reflux from the stomach"

As you can see, there is much food for thought here. Domink has at the very least retained these two, but I suspect he has retained more.

Felicity recommended someone who is an expert in this field, and whilst we may not be able to go to him for the therapy itself, we will be going to see him for the initial assessment. It takes on average, a year to eighteen months of therapy to release these reflexes, but by all accounts, once they are released, the progress and improvement in the individual is life-changing.

I just cannot imagine how much happier Dominik would be if he could fully participate in his life. He is often so timid, afraid, cautious and in pain to even begin to think about taking part in the activities he would like to, but this might just change all that. 

And with it, his heels might actually feel the Earth. How great would that be? 

I'm going to sign off now and hope that what I have written is coherent and helpful.

And, to all of you out there feeling the weight of your responsibility; don't worry, you're doing a great job, you're not alone and remember, it is only temporary and it will get better.

Best,

N x

And 2016 gets off to a flying start!

Where to begin?

Happy New Year to you all. What a whirlwind this year has been so far. It's like someone opened a door way or something. 'Stuff' (for want of a better word) is just flying into our lives,.

It is breathtaking in its speed.

But first a few thoughts on Christmas this time around.

Aside from one event, it was brilliant. I can honestly say it was all about the things that truly matter. No one was that fussed about presents (although they all love their tablets), it was about spending time together and having fun.

We had very few visitors but the ones there were made the event all the more special. I do wish visitors would have a little more time for everyone when they came though, but at least they care enough to come and see us. I love you all and we appreciate your time,

One small request on behalf of the kids before I move on,. Please try to to show a little interest in what they've been up to! I know its not the same as asking a child who goes to school, but try anyway! I know they bombard you with lots of information and that its mostly about things you've never hear of or things you have no interest in, but, well, ABC's  and mental arithmetic don't count as interesting either really if we're honest. What I am trying to say is that we should simply celebrate enthusiasm and happiness whatever the cause! My four would love to show you what they've been doing. They LOVE what they all do. Please, try to reserve judgement and witness what they are all achieving, even if it isn't something 'mainstream'. I think it is all the more impressive because it isn't! The 'mainstream' is exactly that...it is what most people can learn during the course of their everyday lives. It is the majority, the ;normal', the (dare I say it) mundane. Listen and watch what kids have to show or tell you, whoever they are. Listen even more carefully if they are passionate about it. This is where the true learning experience happens. Especially if they are passionate about. It is important to them. We ask children to pay heed to what is important for us (and society in general I guess) a lot  of the time but sometimes perhaps, we should spend some more time listening to them.

So, yes, where was I...The New Year!

Here's some of what has been going on. Obviously keeping a positive slant on it all. I don't find focussing on the bad bits helpful because they would then over shadow the progress and I don't want that! There have been some tough moments, of course, but what follows could not have happened as it did/does, without them. Every experience is a potential learning experience.

 # Lily!

Lily is pretty much reading fluently, and she is reading words that she doesn't know and they rarely pose a significant problem. She took to the 'hoverboard' like a duck to water. (No, it hasn't caught fire.) She was an amazing hostess at her own Birthday Party. She took to ice-skating like she was born to do it. She is a born 'mover'. Not sure where that will take her but I am sure it will be far. Her innate talent and the ease with which she learns new skills is inspiring. Her vocabulary and maturity also continue to amaze me. For example. we had our 11 year old dog, Tia, put to sleep in December and Lily chose to stay with her until the end (with my mum). Just incredible. The vet tried very hard to guilt me into removing her but I gave Lily the choice and respected her decision. She was amazingly pragmatic throughout. She was a little sad, but, she was also completely accepting and full of love. I am so proud of her. What an amazing human being. She has only spoken positively about Tia since she died and seems to be happy with the desicion she made. (As are Hannon, Dominik and I and we chose to leave.) Love you Lily.

 # Hannon

Hannon it seems is a GAME MAKER. He spends significant periods of time creating and refining various different game ideas. He researches his options. He learns from other people. He experiments with different ideas. He and Lily do 'voice-acting' for their own characters too! He also never. gives. up. His tenacity is awe-inspiring. He is so determined to succeed. It makes me so proud. He tampered a bit with magic over the holidays (and engineering) but has left those behind for the time being. He has also found the time to read at least 12 books since November and it is staring to get expensive!!! But, I obviously cannot complain.. It is simply a running joke.  I even went and bought him his own bookshelves and he is actually using them! Yay Hannon. I love you.

 # Dominik

Dominik has made some massive strides too. He has completed over a month of daily exercises designed to lengthen and strengthen the muscles etc in his lower legs. These can be painful and the demand from me is a daily one so I would never have guessed he would have this much staying power. He is giving this his all. I think a physiotherapist would be able to support him now he knows he can do it. Great progress.  He has also showered twice on the same day that I have asked him to do so! (A miracle for a child with PDA and SPD.) He has also been letting me brush his teeth...not everyday, but more than ever before! He continues to improve his sketching skills (with a new rubber and pencil sharpener) and practices almost daily. He has rediscovered his love of music and all things rhythm based. He seems to be 'pitch perfect'. He can whistle the tune his tablet whistles when he gets a notification and there is no discernible difference. He almost beat me at Just Dance too!!! (Unheard of!!! Along with Mario Kart, Just Dance is about the only other game at which I can do well!) He found something called a Lauchpad and is desperate to try one out. We discussed it and after having talked about the benefits of him having one of these, we actually discovered that he needs (and would prefer) an electric drum kit into which he can programme all the sounds he likes! And, the boon, we don't all have to listen to his creativity. (This will build on all the times we spent playing with Synthesia and a couple of other rhythm/music based visual games (DJ Hero being another)). I cannot begin to imagine what he will create but we are both itching to find out. I also think that the drum kit will have many more benefits...not least of which will be to further strengthen his legs and improve his physical health. His motor skills will also surely take another leap forward as will his proprioceptive skills I should think. This is just brilliant! Alongside his parkour and his rekindled love of creating his own smoothies really bodes well for the future! So proud Dominik, so proud of you. Mwah. Love you.

See, I told you 2016 hit the ground running!

And now for Harriet...well, that would be an essay! She's the best! You'd have to meet her to truly appreciate her awesomeness though. Suffice it to say, she LOVES to climb, point, bite and smile. :-P

And finally, here's my favourite (of favourite ever) picture of our Christmas 2015.

Too. Funny.

And no, Hannon was not like that all the time.

And a dear friend made all the hats for us. Thank you Cara!

Oh, and, the photo was taken by a lovely friend who spent Christmas Day with us. She also brought her beautiful shitzu -yorkie cross. We had such a lovely time.

It was certainly a Christmas that we will remember as being full of smiles and love.

Oh, and we did buy a few family games but by far our favourite is Sushi Go! Lots of fun. Deceptively simple, tactical card game that is hilarious and sneeky (think Uno I guess)!

Happy New Year!

N x

Christmastime!

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

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

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

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

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

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

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

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

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

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

Merry Christmas & Happy New Year everyone.

On to 2016!

N x

Ups and Downs.

As is becoming my way, I wrote this in response to a message from a friend and it sums up where we are at nicely.

So, I honestly cannot think of anything that we have been doing in particular that is noteworthy but I do know that I am utterly EXHAUSTED!

Half-term turned out to be quite busy I guess with a couple of trips to woods (mushroom hunting and tracking and then making wands and pixie dust), some shopping with mum for my birthday (Fly boots rock!) and then some friends visiting here and there (one day I had 8 children in the house...arghhhhh!).

I guess I am doing ok but I am still a little lonely. It sucks not having anyone to pick up the slack when I'm tired or stressed out. At the end of a bad day what I would not give to have someone to chat to about what happened. What I would not give to have someone bring me a coffee in the morning, just sometimes. I do begin to go a little crazy inside my own mind some days.

This especially applies after Dominik or Lily meltdown and I've used up all my energy (which is usually at a pretty high level!) sorting them out and then there are still Harriet and Hannon to support in the aftermath.

Yesterday in particular was bad. Dominik has been having serious trouble sleeping again (we're talking between 4 and 6 am to fall asleep) so yesterday, when we had to get to parkour for 1pm, he was shattered and not in any fit state to get through it. I was dreading it before we got out of the door as he insisted on wearing his new trainers despite not having even worn them in the house yet! Yup, setting himself up for the inevitable fall.

He had the most massive public meltdown he has had in a very long time (so long in fact that I can't recall the last time) and it was spectacular. 

Swearing, kicking, shouting, punching and crying all at the top of his very loud voice in a very small gym.

It was all because he could not agree with the other children where his place in the line was and then, because they all disagreed with him, he felt that they were bullying him. It was heartbreaking trying to explain to him that it wasn't bullying and that it really wasn't that important. But, as those of you with Autistic children already know, this is a fruitless endeavour because it was not as he needed it to be in order to manage.

They all said his spot was somewhere different (because he had left the line to speak to me and change his shoes) to where he had begun and he just could not manage at all with that yesterday. This has never happened before and Dominik has been going to parkour since September so that is an indicator of just how bad he was feeling. It has highlighted to me just how massive his needs are when we are not in 'optimum state'. It has also been kind of a 'blessing' as I have the dreaded DLA paperwork sat in my kitchen waiting to be completed. Sigh. What a soul destroying job that is.

On to Lily then. She is pretty dire too right now. She is having trouble sleeping also. Not quite as bad as Dominik, but about 2 am. She is grumpy, argumentative and easily stressed most of the time if things are not kept calm, predictable and as she likes them to be. This is perhaps even more tiring than Domink if I'm honest. She will not be rushed, she will not be told what to do and she will not participate in anything aside from riding lessons.

I think before Harriet arrived this was fine because when they were up all night, I would be too! We would do all the things we would usually do during the day, at night instead so I felt ok about everything.

But now, obviously, Harriet gets up at around 7 am and I need to be up then too. I have to get to sleep before midnight or I cannot function at all and I start becoming more Aspie by the day and meltdown left right and centre over things that are just not that important (like a crumb on the worktop or a shoe on the floor) . This does not happen when I am doing well! Having the two of them going through a rough patch at the same time is pushing me to my very limit that is for sure.

Hannon however is AMAZING (thank goodness). He is excelling at parkour. Loving his running machine. Utterly focussed on becoming strong, fit and healthy. He is still programming his games with aplomb. He is now learning how to do some video editing and working on improving his spelling, grammar and punctuation (although he doesn't know that!) through his video uploading and responding to peoples comments.

Harriet too is AMAZING! She is above the 75%ile and growing beautifully. She is cruising, landing on her bum, kneeling up, clapping, waving, blowing kisses, almost standing alone and generally enjoying her new found communication skills. She is happy and content, loves being read to and enjoys playing with her big brothers and sister more than me! She also loves to eat although still prefers the breast!

I have just taught myself some basic crochet skills so have made Harriet some leggings and am making her a matching bonnet now. Feeling proud of that!

So, there you have it! Not a bed of roses but still ticking along.

On a final note, I am going to be doing some informal chats at The Avenue support group next week which is from 12.30-2.30 pm on Tuesday, November 17th at The Pentecostal Church, Crab Lane, Biggleswade, Beds, SG18 0LN. If you would like to come along and have a chat please book by sending an email to - theavenuesupport@outlook.com

Thanks for reading,

N x