#UnlockCallum: Readjusting to Normal Life

The First Week Back Home – New Eyes!​

Since returning back to the UK last Saturday evening life has been a total whirlwind and quite simply brilliant! I am going to attempt to update our blog weekly, every Sunday, until we return to Canada on the 12th August 2017 when I’ll return to daily updates.

So we landed in the UK and celebrated Callum’s amazing progress in Canada with a cheeky glass of champagne and a biscuit (as you do!). Callum was so excited to return home, he was incredibly alert and aware of everyone around and couldn’t contain his excitement. He slept from 2am -9.30am and woke up a little unsettled. He was struggling with being back home and seeing it for the first time in an orientated state. By 4pm he did settle a little bit but we’ve both been struggling with jetlag – it has been hitting me like a brick every day around 2pm so goodness knows how it feels for Callum!

So, Monday arrived and you should have seen him run into school, he was so thrilled to be back! He remembered all of his old routines and remembered where to put his coat and bag and waltz into breakfast club like he’d never been away. I could sense there was a certain level of nervousness from Callum though as he was insistent that I walked down the corridor with him as he grasped my hand tightly. A completely normal response when you consider the Canadian bubble we’ve lived in for the previous two weeks. However, once breakfast was served he was ok and I made my way up to my office. Due to a previously arranged appointment, I was due at Head Office on this day so after an hour I made my way up the M1 and left Callum in school.

Callum spent the day pacing and exploring the entire school; we had agreed that we would follow Callum’s lead as his non-verbal cues would tell us where to go and what to do. He obviously wanted to re-establish himself with the school and would walk in and out of most rooms repeatedly checking they were still there. He was generally unsettled but happy to be back.

On Tuesday, Callum arrived to school very content and his teachers witnessed a ‘first’: Callum enjoyed playing chase with another little boy. Remember Callum was not even aware of his peers and even if he was he certainly wasn’t interested in playing with them! This was such a moment and one of his teachers ran up to tell me and even better share the video evidence. We were all bursting with pride! Callum was also incredibly focused on the light tubes in the sensory room – he has been in there time and time again and never bothered with these lights! He was following instructions first time with absolutely no problem or stress – Callum was generally very content! On Tuesday evening we video called Desmond from home and it was brilliant. Callum was definitely aware that Desmond was on the screen and relaxed whilst watching Shrek. We were lucky enough to be joined by Ray Davies (son of Ron Davies) and it was great to share Callum’s journey to date. During the video call Desmond was able to spot subtle signs of sadness (Shrek got a bit scary at one point), then fear, then empathy from Callum’s body posture and eyes – Desmond really is a marvel! This array of emotions displayed by Callum in a few moments was brilliant – we just need to make sure we label them clearly for Callum so he can understand what he’s feeling!

On Wednesday, Callum seemed to want to retreat a little and I’m not going to lie and say we were all a little panicked by this but we shared this on our facebook group with Desmond and as a result calm was restored. Callum had experienced two full on days and he needed Wednesday to process everything he had taken on. Desmond thankfully stated he would be very happy to talk to me, Callum’s two wonderful staff at school and DawnLouise at Callum’s after school club on Thursday – so we prepped our questions and slept peacefully knowing we had the constant support of Desmond guiding us every step of the way. We are all certainly feeling the pressure, the baton in #unlockCallum had been handed over to us all and we desperately didn’t want to waste a moment by getting it wrong. However, as Desmond explained ‘as long as you do everything with the best intentions for Callum, then he will feel that and good will come out of any experience.’ At school we had to really reflect and seek solace in the understanding that if something didn’t quite go to plan, know that we would spot this and change it immediately.

On Thursday, Callum went horseriding and for the first time ever he was very unsure of the horses! This is just another piece of evidence that demonstrates the impact of the NOIT. In an orientated state, Callum was not sure of an animal he had previously had an incredible bond with! I can only imagine how Callum’s eyes and ears were perceiving the horse, it demonstrates the extent of the new clarity in which he is seeing his new world! Thankfully the staff recognised Callum’s fear and guided him through the required steps to get him to feel confortable on the horse again – which they achieved with great success!

At 4pm we enjoyed an enlightening video chat with Desmond and we revelled in asking him our plethora of questions to which he responded very clearly following the Davis Autism Approach leaving us all feeling very positive. I must confess that this conversation made me realize just how much I am missing Desmond! This is despite us having video called most days and messaging him numerous times each day! I cannot wait to go back to Canada on the 12th August!

On Friday I was on a training day so absent from school and Callum really wasn’t very impressed about it at all. He was incredibly tired from such a busy first week and I was certainly struggling so he must have felt a lot worse.

So to summarise Callum’s first week, he has been very brave and wanting to explore everything/everywhere and check out this new world. I am thrilled that Callum is inquisitive and wants to know things, showing an interest in the people and environment around him is a HUGE first step. We are all on a huge learning curve as a result of our trip to Canada but we have very open discussions and as Desmond reminds us ‘an act with good intentions is a positive act as Callum will know the source of the intentions and feel it.’ We are learning through observations and together we are recognizing the vital small steps that are critical to Callum’s overall development.
Bring on Week 2!

#UnlockCallum: Coming Home

The Final Day in Canada

The final day in Canada!

Today was all about ‘handover day!’ I woke up incredibly anxious full of questions/concerns, some of which I have listed below:
‘What if I can’t continue this progress at home?’
‘What if I get it wrong?’
‘Who’s going to help me in my moment in need?’
‘I don’t want to be on my own again!’
‘I don’t want to deal with the ‘doubters’!’
Just generally feeling ‘AAARRRGGGHHHH!!’
I felt an overwhelming sense of fear about stepping on the plane to come home tomorrow because of the above. However, I swiftly discovered, within an hour of meeting Desmond, I really didn’t need to have any fear and in actual fact I just need to get cracking with the great team we have back in the UK – you know who you are!

I left Callum in the safe hands with his Grampy this morning watching his favourite movie in the hotel’s cinema room – he was very happy and content with this! It felt very strange leaving Callum as it was going to be the longest I’d been away from him since we arrived on the 12th June, I felt a bit like I did when I returned to work after my maternity leave! However once I arrived at Desmond’s office and ready for my handover lesson, I focused on everything Desmond was telling me – I was in the zone!

Firstly Desmond talked me through the Stepping Stones Program he has been working through with Callum and explained the finer intricacies. He taught me how to set my ‘energy dial’ which is now (and probably has always been, I just didn’t appreciate it!!) so critical for Callum to cope with everyday life but I came to the conclusion everyone could do with an ‘energy dial’ as it helps you work out what energy to enter a room/conversation with to ensure you get the right approach. This is so critical for Callum as remember he can pick up on your energy very quickly, if Callum likes being in your space you can be certain you have a positive energy about you that’s for sure! If not, then you’ll need to readjust your ‘energy dial’ – he can teach you an awful lot about yourself if you wanted to know that sort of info! Thankfully I totally understand this methodology as I use my intuition an awful lot which is all linked to picking up on the energies around me. At school I work hard on ensuring the staff know that they need to deal with any negative energy before they step through the school front doors because it impacts the individuals in their class so much if they don’t – thankfully they also understand and therefore take responsibility for their thoughts and actions.

Desmond then taught me the ‘release’ which is achieved through a particular breathing method. I have witnessed Callum’s whole being change within seconds of Desmond doing the breathing techniques as it helps Callum regulate his body and mimics the NOIT to a certain extent. Desmond talked me through the release and I fell into a bit of a meditative state during these few moments so was able to appreciate the power of this breathing method on Callum – no wonder he relaxes immediately!! Hamish is going to be brilliant at this because he’s a lot better at switching off than me so will be able to implement this far quicker than me – although I’m going to persevere and make sure I become a master at it!

Beth, director of NOIT research then arrived and she talked through the development of the NOIT and the impact it’s had on individuals to date. Beth also very kindly gave me an additional NOIT and other goodies to bring back to the Uk as well as post the latest model of the NOIT to our home address within the next few days. I could listen to Beth for hours but the one thing I was struggling with was the question ‘why on earth is the NOIT technology not well known far and wide?’ I asked Beth this question and she explained that individuals around the world have had great success once the NOIT has been introduced and those individuals have been incredibly pleased with the outcomes as a result of using the NOIT. They of course tell others but that’s where it stops. However, Beth was explaining today that not only have the NOIT website received a high volume of hits within the last week, emails and phone calls are now coming through from parents and professionals. One professional was a lady who worked in a class of 30 children who would ALL benefit from the NOIT! We know Callum’s story has provided hope to others through the sharing of the VLOG’s and BLOG’s via social media, however I was still struggling with the ‘why not sooner?’ part of my question because we can all see it works. Beth then explained how unique Callum’s journey has been in relation to the speed at which he has progressed before our very eyes. Usually clients have approximately 1 hour weekly sessions with a NOIT consultant/facilitator and although progress is always achieved it is at a slower pace – understandably.

The difference with Callum is that we’ve immersed ourselves in our Canadian bubble and 24/7 embraced every opportunity to maximise the outcome of using the NOIT. In addition Callum and Desmond are the perfect combination – we have struck magic here and has been crucial to Callum’s progress. They have such a special bond that was obvious from the very first moment they met and cemented within 20 mins of meeting! Due to the intensive therapy Desmond has been able to really pull on Callum’s interests and make rapid gains. In addition we are an ‘all or nothing kind of family’ and never do anything by half measures and that in itself has contributed to the success of our two weeks. We arrived with hope, pure intentions and then ran with every opportunity that presented itself – I am certain that gave Callum the permission to accept this invitation to give it a go and see what happens. Callum felt safe so he was prepared to take those bold and brave steps to tackle this new world! Through the VLOG’s and BLOG’s the evidence of impact speaks volumes and nobody can argue with the video evidence we have been lucky to capture – this evidence has obviously provided others to pick up the phone or send an email to Beth to enquire about the NOIT. This makes me so incredibly proud of Callum as not only his he taking bold steps to start afresh now he’s orientated, he’s inadvertently helping others! Callum is one unique little boy and I am proud to say he’s my son.

Desmond had then arranged for us all to speak to Heidi Rose who is a Davis Autism Facilitator and has a great deal of experience with working with non-verbal children and the NOIT in conjunction with the Davis Autism Approach. Heidi was a fountain of knowledge and made it very clear as to what I need to focus on when we return to the UK tomorrow. I have to remember that although Callum is 6 years old he is developmentally working through the stages of a 2.5/3 year old. This means I need to treat him as though he is 6 years old, patronising Callum is definitely not the way forward, yet I need to remember where he is developmentally so make sure certain aspects of his life are age appropriate to ensure he can master certain skills to move forward. I understand this fact far better than I can write it down. Heidi was very clear that whatever I do I need to triangulate it on a physical level, a thought level and an energy level – we do this naturally with a toddler but I really need to embrace it all of the time with Callum to support him whilst he works through his developmental milestones.

Heidi also made a really valid point that I hadn’t considered before despite knowing this is Callum’s second chance as he’s learning everything from scratch. Heidi explained when we return to the UK everything will be new to Callum as he will be seeing everything for the first time in an orientated state of being. This will begin from the moment we step into Hamish’s car, drive up to our house. walk through the front door and into his bedroom! I’ve been very aware that Callum’s been learning everything for the first time out here in Canada but it was all new so it was easier for me to appreciate I needed to explain everything to him…I hadn’t considered this for when we get home! Hamish spoke about this in great detail tonight as it’s important we both appreciate this from the moment we land. It’s such a remarkable journey for Callum yet he’s taking it all in in his stride and very comfortable with this new information.

Before we finished our phone conversation Desmond explained a mother of a child who had been on a similar journey to Callum using the NOIT and the Davis Autism Approach with her son in Italy had read our BLOG and wanted to offer her support via email when we returned back to the UK. It’s this sort of support we’ve received that has made me feel incredibly humble. The willingness and eagerness of people who totally understand and more importantly empathise with my situation has been heart warming and me saying ‘thank you’ really doesn’t do my gratitude justice! Callum’s ‘village’ of support was set up…Desmond has set up a facebook group including himself, Dr Cathy, Beth, Heidi, Hamish and I so that I can send any video’s questions or issue to them all directly. They will all then be ready to respond with words or wisdom or support at a moments notice – this is why I now feel ready to return to the UK – Callum’s village maybe world wide but they are all within seconds away via Facebook – social media truly is a lifesaving tool!! Hamish and I are truly grateful to you all!

I tried to summarise our journey here in Canada on my VLOG but it’s too emotional for me to verbally articulate properly so I’m going to try and do a better job here. Firstly, we flew out to Canada because it ‘felt right’ and thankfully Hamish has complete faith in my judgement when it comes to trusting my instinct and he supported me without any hesitation. Hamish is the one who sorts out all of the nitty gritty and makes sure everything runs like clockwork. Hamish also completely respected my feeling that I needed to be the one to bring Callum to Canada and work closely with Desmond in this first instance and threw himself into looking after Euan. He’s been on the end of the phone/email whenever I’ve needed support/words of encouragement as when he’s right with me he gives me the strength I need to continue in times of adversity. This will be no surprise to Hamish as I tell him all of the time so much so he has been known to refer to himself as ‘the rock!’

Euan, I have spoken about lots already but he really is amazing. Some people in the past have made comments such as ‘Euan must feel really left out at times due to everything you have to do with Callum?’ ‘How does Euan feel about Callum?’ ‘How does Euan cope with Callum?’ The list goes on and if truth be told these comments irritate me. If you have watched our VLOG’s you would have seen how Callum and Euan have a special bond because of Callum’s difficulties and yes, Callum’s needs have had an impact on Euan. As a consequence Euan is able to empathise with others incredibly well, he picks up on non verbal cues brilliantly, he manages his energy dial effortlessly and is a master at articulating his feelings. Callum has had nothing but a positive impact on Euan and you would have seen he has a very clear role in our family dynamics and thriving. Hopefully by sharing our journey people will stop pitying Euan because of his brother Callum and see the positive influence Callum has had on us all. You might have gathered from my words I feel very strongly about this point and I make no apologies for it.

My Mum and Dad have been so supportive and thank goodness they moved nearer to us when they did, life has been tough and the on the spot respite they have provided us has provided us with many moments of sanctuary when needed. Dad has obviously joined us on our trip to Canada and I am so grateful he has because he has looked after us so well. Thank you so very much, we are so grateful.

My brother, Adam has created the VLOG’s every night during our stay, heavens knows what time he’s been going to sleep as he’s been working on them late every evening. However, my goodness they’ve been brilliant and his email’s saying ‘your video is now ready’ has been one of the highlights of my evenings. The Friday before we left for Canada I had the idea about creating the VLOG’s for close family and friends so gave Adam a call and after a few moments of him trying to explain how I could create such video’s he picked up on my lack of understanding (and possibly got a bit exasperated!) and just said ‘do you want me to create them?’ which of course I completely agreed to! Result!

My very good friend Michelle (aka the secretary as she’s named herself) has been the mastermind behind the JustGiving Page and the BLOG. Michelle shares the same birthday as Callum and from day 1 of them meeting they have always had a special bond. Michelle is incredibly calm and Callum loves this, she has hugged me whilst I’ve sobbed on her shoulder in times of despair yet always had my back and relentlessly shared our quest via social media! Michelle, I am eternally grateful to you and thank you so very much!

Soon after I had given birth to Callum I introduced him to my good friend DawnLouise who owns the nursery both Euan and Callum attend before and after school and she told me ‘he’s going to change the world Kim’ and at the time I smiled and said ‘oh ok!’ Dawn – you were right as he’s already helping so many others who need help! Dawn has wiped many of my tears away and picked me up for a number of years because of my despair at not knowing what to do to help Callum and it was Dawn who recommended I looked further than the UK. Thank you so very much Dawn, as ever you were spot on and I cannot wait to catch up with you next week!

Then there is my friend Carmel. Carmel’s eldest son, Jonathan is 5 months older than Callum and they have grown up together but Carmel and I have known each other for over 13 years through work. Carmel has looked after Euan every morning since I’ve been away and she’s made sure he’s arrived at daycare happy with Jonathan and Connie, apparently they have been enjoying singing away to their hearts content to Ed Sheeran on their way! Whenever I’ve emailed my updates in the early hours of UK time I have eceived an immediate response from Carmel as she’s been awake (!!) and her jovial and encouraging words have supported me greatly.

Being a Principal of a school is quite possibly one of the hardest roles to have time out of work during term time, however due to the support of the Trust and Governors I was given their full blessing to get on that plane on the 12th June. This would not have been possible without the strong Senior Leadership Team at KHPA – Clair stepped up to cover me without any hesitation and took on the role of Acting Headteacher with complete conviction. I am eternally grateful to everyone at KHPA but you better brace yourselves as I will be returning with a whole host of new ideas!!!

Finally, Desmond, you are a marvel and you have saved our gorgeous boy from despair! You have showed him that life can be good and fun. Thank you for just being you, being the eternal optimist and seeing the potential in Callum even before you had met him. I cannot wait to see you again in August and introduce you to Hamish and Euan.

So all in all this trip has been life changing…#unlockCallum is happening and in full flow…I believe the keys have been found!

Lots of Love
XXX

Resistance Day

Today started abruptly at 1am! Callum crawled into my bed and was restless until 4.30am until he finally fell asleep. This was the second morning in a row that he had followed this pattern and although he frequently wakes in the night he seemed to want constant reassurance with a hug. I happily obliged and told him it was all OK but that he really did need to go to sleep! We woke up in a thick haze at approximately 7.30am and following a strong coffee for myself we got ready to embrace and embark on Day 8!

 

Callum was not as calm as he’s been, immediately I worried the NOIT wasn’t working fully following yesterday’s unsettled behaviour but it seemed to be OK. We arrived at Desmond’s for 9am and I explained Callum was acting a bit ‘odd’ and a little unsettled. Desmond checked the NOIT and confirmed all was fine and that the tinging sound was perfect. I said my goodbye’s and left Callum in the very capable hands of Desmond. Following my verbal goodbye’s Callum gently yet purposefully grabbed my hand, pulled it to his chest and then pushed it away. Desmond very quickly spotted this and said ‘he’s just said goodbye Kim’ so I left them in peace.

 

I had booked a little RnR treat in for myself this morning whilst Callum was with Desmond and had a manicure. Unfortunately because Callum was acting in an ‘odd’ way this morning I couldn’t shrug that feeling of ‘is this the resistance day I’ve been waiting for since we arrived?’ You see, Callum is the master of resistance and this is at the point many of the professionals who have worked with Callum in the past walk away leaving us with no answers. I have watched Callum do this time and time again and I have witnessed other children do it at school…I know they are testing the adults to see if they are simply go to ‘stick by them and be true to their promise’s of being able to help!’ Callum knows Hamish and I as well as a very small group of other people will not be going anywhere and we will be right by his side no matter what happens. But like I said, Callum is the true master of testing the adults and not many pass his test and I dread it when it comes around because I know I have to begin a new research path to help unlock Callum.

 

Part of me applauds Callum for this – why should he let anyone into his world if they do not truly believe in what they are doing or even more importantly be prepared to push their own boundaries in terms of their professional knowledge and methods! I know Callum has been searching for the very best and no-one else will do! We have witnessed Callum refuse to comply with diagnostic tests on purpose and completely manipulate a scenario that manifests itself into a situation that leaves the professionals aghast…only the very best (and brave) have been able to see this for their own eyes and not deem him as ‘unaware of his actions.’ Ironically Callum has been so incredibly aware and in control of his actions in those scenarios.

 

So, it was ‘Resistance Day’ for Desmond and I was very aware of the importance of Desmond conquering today – and conquer it he did!!! Thankfully Desmond called me tonight and explained how he had showed Callum he’s here to stay and no matter what Callum put in front of Desmond, Desmond wasn’t budging! Through the positive Davis Autism Approach Desmond continued with his breathing techniques intensely for approximately 55 mins whilst Callum pulled all of his tricks out of the bag. Callum stood on the chairs, climbed over Desmond, didn’t fully respond to instructions (despite hearing them), increased his hyperactivity and flapping of his arms, the list goes on….!

 

Callum was also starving, despite having a big breakfast and this just made resistance day even tougher because Callum does not like feeling hungry and will repetitively hunt for food and will not settle until his hunger disappears. Desmond explained that most importantly he ‘requested’ Callum to behave in a certain way that empowered Callum and then when Callum responded positively Desmond gave him a tight hug and send ‘thank you so much Callum’ So although Callum was misbehaving, he was empowered to make the right choice which was then rewarded with positive recognition of the behaviour.

 

This all makes perfect sense and is very logical once explained but here’s the bit that is the unique part – Desmond explained he made sure his energies were low from the moment Callum entered his room. We have all experienced that party, meeting or interview when we walk into a room and we either feel happy or sad, excited or nervous, at ease or uncomfortable or simply just not right. This is because we unconsciously pick up on people’s thought processes and subsequent energies. I know this because I do it all of the time and very rarely does my instinct let me down. We travelled to Canada simply because it ‘felt right’. We have observed Callum walk into a room, levitate towards certain individuals and without fail he always picks the people who have had to stand strong against adversity. He will walk away from people who are not pure in their thoughts and actions, he does not tolerate their energy on any level. Thankfully, Desmond completely understood this whole way of being without me having to explain anything and as a result Resistance Day came and swiftly disappeared! I was relieved and amazed.

 

Two hours later I returned to pick Callum up and he relaxed back into the new ‘calm and controlled Callum with each hour that passed. He had a huge lunch which certainly helped and then we went on another adventure to the CN Tower in Toronto.

 

48 hours ago we had carried out the same train journey to Toronto but this time there was a difference…Callum was so in control of his body and actions that he barely sat on my knees on the train or held my hand walking to the station to the CN Tower. He followed all of my instructions first time and just looked so much more peaceful than previously. Considering this was ‘resistance day’ all was going so well. Callum and I thoroughly enjoyed going up the lift at lightning speed up the CN Tower and looking through the glass floor – although Dad went a bit pale as he’s really not a fan of heights!! Whilst on the train Callum called me ‘Mum’ for the second time and in my world that’s a pattern as it was more than once!!

 

Upon our return I messaged Desmond and explained that whatever he had carried out with Callum this morning had worked which was when Desmond called me to explain the above in detail. I have so much to learn myself and I’m fascinated by Des’s methods. Following Callum’s Epsom Salt bath (great to help relax toddlers and young children if you wanted to try it), a light supper and a bit of Fireman Sam Callum fell into a peaceful sleep – I wonder if I’ll be seeing him at 1am!?!