Monday, 13 March 2017

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 preceding 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.


Wednesday, 1 March 2017

#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

Monday, 30 January 2017

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 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



Saturday, 7 January 2017

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

Friday, 30 December 2016

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 - 

Thursday, 8 December 2016

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





Friday, 21 October 2016

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