#unlockCallum: Week 1 of the summer holiday

As a sit here wondering where on earth to start with this update I’m wishing I’d not left it so long since I last posted as a great deal has happened, there is much to share! Let’s hope I can remember it all…

Just over a week ago we finished school for the 6-week summer break and as a result I’ve been able to indulge in some quality 1:1 time with Callum for week 1 of the summer holidays. Euan was booked in for his Level 1 & 2 RSA Youth Sailing award with his best mate and Hamish was at work. Pre NOIT and our trip to Canada, spending a day with Callum on my own was hardwork as I couldn’t take my eyes off him for one moment, he would need the same instructions repeated time and time again and he would very rarely follow a request at the first ask. Also, when I was on maternity leave with Callum he would not leave my side, this wasn’t carried out in a way that was ‘cute’ it was carried out it a possessive way as though I was his. This was incredibly suffocating at the time and I found it difficult to contend with on a daily basis. So it’s fair to say I was intrigued (and slightly apprehensive) to see how this week would go now Callum was orientated and calmer.

Working in a school means no hour (and that’s being incredibly generous) is ever the same; I plan my days as best I can but dealing with 430 little human beings means I very rarely achieve my plans in the timeframe I set. There is always something thrown into the mix that we have to deal with because humans are often hard to predict. I felt this experience of dealing with the unpredictable would hopefully stand me in good stead with Callum. My fingers were tightly crossed I could anyway!

However, I did need one focus point for my week and I decided teaching Callum to ride his bike was going to be my goal. As for the rest of the week I had lots of ideas but I was more interested to see what would ‘hook’ Callum and then I would follow that. This is very much a new skill I have had to learn (and still learning) since our trip to Canada. I have to trust Callum as he proved in Canada he knows exactly what he needs and if us adults follow him he will thrive – this a step outside of my comfort zone and it took me until the end of the week to see his true needs with clarity.

So on day one I set our home up like a mini pre-school! We had all of Callum’s favourite activities and equipment from school and a plan to start with. I was ready! We dropped Euan off at sailing and then I began with enthusiasm – Callum was hyperactive from that minute! I couldn’t work out whether he could sense the change, was I being too enthusiastic or was it just blowing his mind that school had entered his home environment? I did not know the answer so helplessly I reverted straight to my goal and got Callum’s bike out!

Thankfully this calmed Callum right down and he really enjoyed being out on his bike. He smiled, lifted his head up to the sky and hummed his way to the park. His body was at peace and his shoulders relaxed down harmony had been achieved. Although Callum couldn’t pedal fully there was nothing wrong with his steering as he turned a sharp left at the junction that leads to the sweet shop!!! The persuasions of the going to the park soften my request that we needed to go straight on!! Once we arrived at the park I left Callum’s bike at the gate and explained to Callum that when he was ready to go he just needed to go back to his bike. After and hour of running around, climbing on every piece of equipment he was ready and ran straight over to his bike and sat on the seat – he was ready to go home. Not only was Callum communicating with me his requests he had remembered my message. Normally I am very guilty of setting tight timeframes with the boys and I know they could always do with longer on the activities they love. For once I waited for Callum and as a result he was so much calmer and just a pleasure to be around. Physically Callum needed that hour at the park, his coordination improved, the hyperactivity disappeared and he relaxed. I could instantly see the importance of following his needs.

After cycling home we enjoyed a big lunch as Callum has always eaten a great deal at breakfast and lunchtime. Callum then fell straight into the pattern we had in Canada or an hour chilling out on the bed watching the iPad. This is a similar pattern to a toddler who would have a nap at this time and although Callum didn’t sleep he did allow his body and mind to relax. After the hour he sprung into life and off we went again!

In the afternoon I tried to engage him in some of the jobs he did at school. This was a massive failure! Callum pacified me to some extent initially but after 30 minutes he would tightly shut his eyes and turn his head away from the activity! My initial thoughts were ‘you are kidding me!’ to ‘good tactic, I might try this when I don’t want to engage in something!’ I did chuckle to myself as his face (with closed eyes) was strongly telling me he was not interested in the slightest. I persevered but to no avail. I finally ditched the chalk activity when he got up and placed the chalk in the bin!!

Throughout this week our days developed a nice little pattern similar to the above although I began to embrace Callum’s needs to be more physical. We visited lots of new parks and enjoyed numerous walks. I have talked to him lots to ensure he’s in a language rich environment. Callum’s eating habits have also improved and he rarely uses his hands and will pick up his fork unprompted. As a result Callum’s coordination and balance has really improved. He can now pedal his bike consistently and his bravery at exploring new equipment at the parks has improved significantly.

On Saturday we visited the Heights of Abraham with our good friends Richard, Michelle, Leo and Fergus and due to the truly amazing day but I will write a separate blog tomorrow! It was a day when we witnessed Callum grow even further.

In a nutshell, Callum and I survived week 1! I feel as though I know him so much better and I most certainly have a deeper appreciation for him as the unique individual he is. For once I can read him much better and therefore meet his needs quicker. Callum has been a pleasure to be around and I cannot wait to see what week 2 brings. I might try more regular updates as and when there is a moment as there is so much more that I could have added!

 

Advertisements

#UnlockCallum: Tripping the Light Fantastic, Fundraising for the next steps

On Saturday, July 22nd over 90 people got together at an evening hosted by the lovely Emma from Academy No 1 dance school to tango, cha cha and jive the night away whilst raising funds for the continuation of Callum’s journey. A fabulous time was had by all with many impressive turns on the dance floor by the amazing dancers who tried to teach us mere mortals some of their more basic moves.

After a bucks fizz reception, we were treated to a wonderful fusion dance display incorporating Argentine Tango, Cha Cha, Vienese Waltz and Modern Jive to name but a few. Then, the semi pros offered their services on the floor to anybody willing to buy a dance to boost the fundraising coffers. The equally talented Ella (Emma’s daughter) along with her good friend gave an exceptional singing and dancing routine while those of us with two left feet watched on in awe (and maybe even dabbled in a swift G&T to steady the nerves!).

In a break from the dancing, we dined in style with a delicious fish and chip supper then a wonderful auction of experiences was hosted by the fabulous Richard Johnstone. Prizes were donated from many local business including Academy No 1, Silverstone UK, Northampton Town Football Club, Midus Health & Beauty, Northampton Saints, Snow Centre Hemel Hempstead, Bodystreet MK plus dance sessions and photo shoots galore. The bidding was frantic and lots of lucky people went home with smiles on their faces owing to the goodies they’d managed to grab.

#TeamCallum have been completely bowled over by the generosity of everybody that has given to the cause by whatever means since we started fundraising and this event was no different. The generosity of everybody involved, be it money with the bids and ticket purchases, or with the tremendous amount of personal time and effort given, is truly overwhelming. We thank you from the bottom of our hearts. At the final tally, the summer dance extravaganza raised £1,000 for the #UnlockCallum campaign. Thank you to all those who came and contributed to a truly wonderful evening. Your efforts mean that Callum’s next phase of treatment can go ahead with his trip to Canada on August 12th.

 

 

#UnlockCallum: Amazing Auction

On Saturday, as part of the spectacular dance party, there will be an auction of luscious lots to raise further funds to #UnlockCallum. Why not come along and have a fabulous evening and potentially grab yourself an amazing experience. If you can’t make it but something grabs your eye, Emma is accepting bids before the event so drop her an email with your best amount and the lot number. He’s a taster of what’s available to whet your appetite.

  1. Assorted Chocolate Tower. Yes, that’s a tower … made of chocolate. Why wouldn’t you want that in your life?
  2. Drinks Hamper. A hamper full of booze … what are you waiting for?
  3. Reflexology treatment with the magnificent Michele Sherratt of Midus Health & Beauty in Duston, Northampton. Toe tingling goodness could be yours when the price is right.
  4. Two Hour Private Dance Lesson with IDTA teacher Julie Holland in Shutlanger near Towcester. Will you manage to bag this exceptional experience and impress the rest of the gang at the next dance event with some hot new moves?
  5. Ukulele. Release your inner George Formby, grab yourself a lamppost and lean up against it. That certain person is sure to walk by with your fingers on the strings if you get your hands on this lutelicious lot.
  6. Six Weeks of Dance Classes with Emma Pettitt. Choose from Salsa, Ballroom or Fitsteps, the world is your oyster. A whole six weeks of divine dance classes could be yours if you manage to beat the bids.
  7. Family Photo Shoot with at least five digital images to keep and use as you wish with the ravishing Richard Johnstone (who happens to be your garrulous gent with the gavel on auction night). Strike a pose and release your inner vogue.
  8. Body Street Gym MK – One Month Membership. An overwhelming opportunity to get fitter and more fabulous than you ever thought possible.
  9. Two Cobblers Tickets. Support your local legends, cheer on the claret. Let me hear you shout C-O-DoubleB-L-E-R-S COBBLERS!
  10. Signed Northampton Saints Shirt & Ball. We couldn’t give the soccer crowd all the fun, one for the egg chasing fans among you. A perfect prize for a rugby fan, signed by our local sporting heroes.
  11. Academy No1 Dancers. That’s right, we’re even auctioning off the dancers. One of them could be yours for a princely price.
  12. Two Adult Weekend Tickets to the Silverstone Water Hayes event on 4th/5th November. Kids go free so why not take the family along to the largest Formula Ford 1600 in the world and watch 120 racers take part to win the grand finale trophy. All this plus admission to Silverstone’s annual firework display on the Saturday evening. Make sure your bids are under starter’s orders.
  13. Two Reef Knot Silk Ties. Dazzle your friends with your suave sophistication with these stunning silk ties which retail at £69 each.
  14. Private Family Ski Lesson for up to six people at Hemel Hempstead Snow Centre. Carve your way to greatness as you slip and slide down the slopes for an hour perfecting your skiing or snowboarding technique with your nearest and dearest.
  15. And more to come …

If you can make it on the night there’s even more fun to be had, and even more opportunities to raise money for two great causes, including our own wonderful Callum. There’ll be a photo booth, with the opportunity to purchase photos and DVDs of the excellent evening. For the kids there will be the opportunity to donate their pocket money to guess the name of the teddy and guess the amount of sweets in the jar and win the prizes if their guesses are correct.

Final orders for food need to be in today. Tickets are available from Emma at Academy No 1. If you are unfortunate enough to be already busy but fancy one of the amazing auction items, Emma is also the one who needs your highest bids. AcademyNo1@hotmail.co.uk

Best of Luck!

Here’s to a most excellent evening!

dance

#unlockCallum: Dance Party Fundraiser Event!

The amazing fundraising for #unlockCallum continues with a fabulous Dance Party! This weekend we will be thoroughly enjoying dancing the night away, eating fish and chips and bidding in the auction!

Everyone is welcome so if you fancy it please do contact Emma Pettitt via email a academyno1@hotmail.co.uk.

The funds will go towards helping improving youth employability in Zanzibar and our quest in unlocking our son Callum. Callum is visiting Canada in August to complete round 2 of his pioneering treatment and all funds raised will support this.

Huge thanks to Emma for hosting this exciting event and we hope to see you there!

Lots of love

Callum’s Family

Xxx

#UnlockCallum Week 3: More words, more new experiences and more fundraising!

This week has been full of further ‘firsts’.

Monday:

Callum entered his new classroom with his new classmates at school as it was ‘Move up & Stay up’ and overall it was a complete success. He explored lots but was very settled and content. At school we’re really trying to understand where Callum is developmentally so we can help him work through all of the milestones he is searching for and moving through at a rapid speed. This is an exercise I have carried out with other children before and appreciate the importance of identifying Callum’s gaps now, matching the education provision so these gaps can be explored and achieved so Callum can make accelerated progress.

Thankfully Callum’s sleep has really settled down and he’s sleeping consistently from 7.30pm – 5am, which is such an improvement for Callum as his sleep has been incredibly irregular for such a long time now! We did have one night this week when he was awake from 1-4.30am but that’s better than the 3 or 4 nights a week we used to experience this! He loves being surrounded by his teddies and you can see how he likes to keeps them all within touching distance.

IMG_6990

Tuesday:

Callum woke up with his first cold since being ‘orientated’ – he did not like this one little bit!  It reminded my how low Callum used to get when he was poorly as a young baby.  Callum developed a really high pain threshold during the ‘chaos years’ as I now refer to them.  He was not aware when he was in pain and it would take a really bad injury for him to wince.  This is a change in Callum that we’ve all really noticed, he looks in real pain when he falls over or knocks himself on something and he will search for a hug.  When orientated Callum’s pain threshold is reduced quite simply because he is aware of something hurting him.

In addition we had my very good friend, Ron Fortuna, come in and visit Callum at school to help the team aid Callum’s progression. Although Callum knows Ron, Callum was all over the place during his visit. I don’t think Callum sat down once or focused on a task for more than a few seconds (and that’s being generous!). I know myself and Callum’s teaching team felt really deflated as we wanted to show Ron the power of the NOIT and Callum’s new found abilities, however Callum wasn’t having any of this! Following a timely video chat with Desmond, he helped us all understand that our willingness for everything to go swimmingly and our worries/fear for it not would have been the energy Callum would have picked up on! I have witnessed Callum do this time and time again but it was even more powerful with him wearing the NOIT as he’s now so much more aware of what everyone is feeling/thinking! As ever though we all recognised this as a further learning experience, had an early night and woke up full of positivity for the following day!

Wednesday – a new day! Here’s a brief update from Callum’s classteacher’s:

Today has been so much better!!! He didn’t try to leave the classroom for over an hour! That’s huge! He was settled and engaged and even joined in in a group activity! Second part of the morning he needed to climb and that’s what we allowed him to do! We have a visual for when something is not available’ to match the language we use ‘we can’t go there now but we can go later’ then distract. He’s responded to this totally today!! He only went to freezer with the ice poles in once! During forest school today Callum shouted out “me” a few times We found a log away from the group as I could sense he needed some quiet time- we sat and I started breathing with him. I said “It’s ok ,you are safe”. On asking Callum ” can you help me” he started to breathe and copy me!

Callum saying ‘Me’ is a huge milestone and Desmond got very excited! Callum is beginning to recognise himself as an individual more and more and will be a great platform for Desmond to build upon when we return to Canada on the 12th August.

On Thursday we enjoyed our weekly video chat with Desmond and we focused on the language we should use at both school and home to help Callum understand key aspects of the Davis Autism Approach. This was really enlightening and on Friday Callum responded to everything perfectly. The Davis Autism Approach is incredibly powerful and we witness Callum just tap into everything linked to it with such ease! It’s most definitely the right approach for Callum, although we’ve all been using the language that Callum responds so positively to with other pupil’s – it works for them too! I said to one Year 6 boy who was doing something I’d rather he wasn’t doing ‘I’d prefer if you didn’t do that.’ He quite calmly stopped and replied ‘no worries!’ It’s all about mutual respect!

Callum’s ‘village’ set up on Facebook Messenger has been incredibly active this week and everyone has really pulled together to help us continue supporting Callum the best way we can. We are learning a whole new way and feel safe to try new methods/ideas with the support of Callum’s village. At school and home we are incredibly open to maybe not getting something quite right and being pointed in the right direction. This is critical to Callum’s success. I met up with a wonderful friend last week (I will explain more about that in a minute) but she used a great expression ‘the more I know, the less I know!’ This resonated with me so much. I have been on an incredible journey and my eyes have been opened up to new ways, however, it’s all new and I’m still learning so even though I know more than I knew 4 weeks ago I am only at the very beginning! I do hope that makes sense? I think what I am trying to explain is that never assume you know everything because the moment you think that, that’s the moment you stop learning and growing – there’s always something else to learn!

As I’ve just mention my friend Rachel Singer popped into school for a cup of tea and a good old catch up. Rachel is responsible for me taking up my first Headship and I have been eternally grateful for her placing me in a school that led towards a career path I hadn’t ever thought about before. I didn’t work for Rachel for very long as an exciting opportunity took Rachel up North and although I was gutted to not learn more from her directly, we have always remained in touch.

Rachel is always searching for new and exciting opportunities to better the lives of young children and therefore followed Callum’s story with intrigue. Since our trip to Canada Rachel has been working hard on exploring how The Davis Autism Approach can be implemented in the UK so watch this space for further details very soon!!!

Friday – just brilliant! Here’s a note from Callum’s teacher’s below to summarise his day – I’m sure you can feel their excitement!

Okay are you already? So far, today has been AMAZING! Callum has responded to the new routine. He stayed in the classroom from 10-10:30 without trying to leave once. Explored the sensory tuff spot (sorry Kim and Hamish he is covered in an edible mud) he found the bugs hidden in the mud. It was amazing. We got cleaned up and then Callum sat with me to paint a rainbow. We did it with our hands first, followed by hand over hand with a brush. For the final stripe of the rainbow I handed him the brush and said you do it and he did! It was almost perfect to fit with the rainbow. He didn’t once try to move away!

 

unnamed

We then did 10 solid minutes of breathing followed by building a tower with lego bricks (large ones) he could place one brick on top of the other. We then did 5 more minutes of breathing before we looked at the Thomas train. The other children were creating a giant map. We sat together on the floor and Callum studied the train. He ran his fingers over the wheels and he sat and watch the children draw him a track. Together we pushed it on the track and then up we jumped for break! He spent the longest time ever out doing the daily mile so he’s slowly coming round to the crowd. He also spent the whole time in nursery for break.

After break he did a job in the pod with Katy. One of the gaps he has missed is opening a pot with a lid on. Inside the pot were some grapes and after hand over hand and being shown Callum successfully opened the pot – he just needed some initial help pulling the top of the lid. He will master that by tomorrow I feel sure. He then had 15 mins of down time on the laptop. He chose sesame street. He then went to the trim trail just before lunch for climbing time! Callum also confidentially registered himself this morning. Along with joining in with the movement group on the trim trail. He didn’t care there was other children there!

I took him to the toilet and when we got there he shouted ‘no’, I wasn’t sure so I said well let’s try. He pulled his pants and trousers down sat on the toilet stood up again and said ‘no’. He didn’t need a wee! This was great! Callum also saw a classmate had the keys in his hand to open the gate and followed him so we could open it. He noticed the keyhole on the toilet door and reached out with his finger to touch it. When Kim took a photo at lunchtime he heard her voice and looked towards the camera. Callum also said “ball” when we were in the sensory pod, made a ” moo” sound during yoga and finally stayed out for the full 15mins during daily mile AND ignored the bowl of fruit on the playground ( we all know how much he loves his fruit too).

By the end of this week Callum is regularly using up to 10 words in school to express himself! This is incredible when you remember he was non-verbal before we left for Canada!

On Saturday we supported the brave abseiling fundraisers for #unlockCallum.

Crowdfunding: Help Callum

Callum’s Dad, Hamish and our good friends Dawn Johnson, Richard Jarvis, Richard Johnstone and Alan Jackson all abseiled all 129M of the National Lift Tower in Northampton!!!

#UnlockCallum: The Abseil

We are so proud of them all and between them they have nearly raised a further £2,000 that will all go towards funding the next round of Callum’s pioneering treatment in Canada with Desmond. Hamish has produced a video so you can all witness their bravery – well done team!!! Thank you so much to everyone who have donated/shared our quest in helping unlocking Callum – we are so incredibly grateful!

Here’s some photo’s of our day…

So… we have one more week left at school before the Summer holiday period here in the UK and I cannot wait to watch Callum’s progress this coming week!

XXX

A total learning rollercoaster of a week!

Our second week back after our return from Canada and Callum continues to progress at a rapid pace although it’s fair to say we were all emotionally drained by the end of it! You notice I use the term ‘we’ and not ‘I’ and it’s week’s like last week I count my blessing as Callum’s UK & Canadian ‘villages’ have been working in unison and together further progress was achieved. So, let me explain the rollercoaster of a week, brace yourselves…!

Monday was a hard day for Callum, he struggled returning to school from the weekend, however the staff at school gave him the time, place and permission to get his frustrations out swiftly. Callum was very vocal, he was frowning at me lots, which is a new facial expression I haven’t seen since he was a toddler but my goodness it was the double of Euan’s! He needed to run and thrash his arms around, he wasn’t happy but the staff persisted with the breathing technique that Callum responds to so well, gave him cuddles and told him he was ‘ok’ and by 1pm he was back, calm and content. At Daycare, after school he enjoyed a peaceful time relaxing and was sound asleep by 7pm.

On Tuesday morning Callum woke up and was very peaceful within his own skin again and as a result he had a fabulous day and lept forward in his progress. This is the pattern we are beginning to notice with Callum, he takes a leap forward, pauses for a very short while and then leaps forward. This is so new!!! Remember, Callum has only regressed in the last few years, there has been NO regression since the introduction of the NOIT and Desmond, he just pauses and then takes a leap!

During my handover meeting with Desmond, Heidi and Beth before I left Canada the ultimate goal was to see Callum recognizing himself and one of the steps Desmond was hoping for was for Callum to say ‘mine’ for something. This only happened on Tuesday!!! Callum’s teacher very calmly walked into my office with Callum by her side and calmly explained ‘something amazing has happened Kim, Callum said ‘mine’ when I held Mickey (a soft toy Callum’s become attached to!).’ I paused from my task and got incredibly excited and said ‘no way, that’s huge, that’s what Desmond was hoping for!’ Reality then hit everyone and we enjoyed a lovely celebratory moment. The speed at which Callum continues to progress is remarkable and once again I am so proud of how brave he is being. He makes it look easy in many respects but I can tell by the evening he’s exhausted and it’s an intense journey for him!

The day continued and got better and better…Here’s a little note from one of Callum’s class teachers to explain his achievements on Tuesday:

When we couldn’t go to the trim trail because it was sports day I said ‘I’d prefer you to stay in class, we can go later, won’t it be great when we go later?’ and Callum shouted ‘now’ When I tried to engage him in snack he shouted ‘no’ He has said more when he saw the laptop. He has said ‘move’ again to me when I was in the way of his pathway (by accident). He has said ‘Mum’ so many times today – so much so I’ve managed to record it twice! We also had a random shout of ‘Dad’ when he was climbing!

So in one day Callum said ‘now’, ‘move’, ‘mind’, ‘no’, ‘Mum’, ‘Dad, ‘yes’!!!!! Callum was completely non-verbal before the amazing NOIT and Davis Autism Approach were introduced under the watchful, patient and masterful Davis Autism facilitator, Desmond! I can’t tell you how much I love hearing Callum’s distinct voice and we all know it’s Callum talking before we see him because his voice does stand out. Every evening Callum’s teachers and I evaluate each day to help us all process his achievements and they made such a lovely comment, Hannah said ‘I’ve found myself just carrying on as normal whenever Callum speaks as that’s what I expect now but then I have to remind myself Callum’s only being talking for two weeks!’ I can also hear Callum walking up the corridor self-regulating his breathing by doing his release breathing – he is so relaxed when he is carrying this technique out.

On Wednesday we noticed the NOIT was working intermittently and I was incredibly worried that one of the wires had come loose. Callum is so active and strong, the NOIT is delicate and on you and I it would be able to cope with our day to day movements, however with Callum rolling, crawling, climbing and enjoying lots of hugs the NOIT is vulnerable to damage. We could see the moments it wasn’t quite right with Callum’s behaviour and facial changes. The most consistent behavioural change as a result of the NOIT not working, due to the wire coming loose is when Callum runs away. This happened a few times today.

However there were still moments of excitement; I wasn’t in school during this day and Callum was not impressed. Since we’ve returned to Canada he makes regular trips up to my office to check I am there, often he walks in, doesn’t even look at me, I say ‘hi’ and he just turns around and walks back to his classroom content. We totally accept he needs to do this for now to reassure him and it appears to help so we fully respect his need to keep doing this. However, I was out on Wednesday and although I had verbally told Callum I wouldn’t be in he kept checking. The staff knew he wasn’t happy about this at all as his bottom lip came out (a family facial trait which Callum used to show a lot as a toddler) followed by several shouts of ‘MUM’. I told him I was very sorry when I picked him up and he responded by pushing my arm away from him – he was showing me he still wasn’t happy with me, which I acknowledged by explaining ‘I know Callum, you are disappointed that I wasn’t at school today and I am sorry!’

Thursday – this has to be the toughest day we have had back in the UK! There were plenty of tears I can tell you. However, no experience is a bad experience, which we constantly reminded ourselves of throughout the day! Basically, the NOIT had broken! Callum was incredibly unhappy and as the day built up he just couldn’t cope anymore. As some toddlers do Callum expressed his frustrations by biting and scratching one of his teachers (the one who fixes everything for Callum at school as well which we all recognised as huge – he knows she’s one of his biggest advocates). This was completely out of character behaviour for Callum but demonstrates the depth of his despair. We all felt so helpless but we had to pause and think, if we’re feeling this bad for Callum then just imagine how low he was feeling!

Thankfully we had a video call arranged with Desmond at 5pm and we watched the clock tick as we needed his help and advice – an hour later, following our phone call we left school with a plan of action and a spring back in our steps! Desmond explained that although it had been a hard day we had all carried out our actions with the best intentions for Callum and that we must never underestimate that. Desmond helped us recognise the positives of the day one of which being how much Callum dislikes being orientated. Remember, this was his world, his safe place in which he didn’t interact with anyone. It’s transformational! I’ve said it many times before but it is only when we are catapulted back to a scenario/situation from Callum’s pre NOIT life that you realise his progress! Was today all about making us adults pause, reflect and appreciate his rapid journey in 4 weeks – I have come to the conclusion it was!!

Following our phone call with Desmond we all had clear next steps – I drove to a shop and purchased Bluetooth headphones so even if the NOIT breaks Callum can hear the important ‘ting’ sound through his headphones. I then drove to my Mum and Dad’s and left Dad with the vital task of fixing the NOIT. An hour later Dad had fixed the wire and we had a fully working NOIT – bring on Friday!!

IMG_6988

Callum’s Grampy had fixed the NOIT!

IMG_6979

Here’s Callum wearing his headphones with the ‘ting’ sound playing watching the iPad with his brother Euan.

It is moments like this when the pressure is immense and I feel it from all angles and it’s moments like this in the past that I have felt very alone. However, today was so very different as via messenger I received immediate advice and support from Desmond, Beth and Dr Cathy in Canada and I most certainly was not on my own. I cannot explain how much this support means to myself but I know with them all right by my side I can get through a tough day and help others around me who are supporting Callum.

Friday was absolutely brilliant; Callum was once again orientated and thriving, news that made everyone breathe a huge sigh of relief. Two moments that really stood out from the day included Callum saying ‘balloon’ after seeing some children holding one and then leading an older pupil to the trim trail and then playing with him amongst a crowd of other children! Callum has really struggled with large crowds since wearing the NOIT as he is so much more aware of them and it’s all a bit over whelming. Callum also said ‘wait’ when the laptop froze during his favourite programme – another new word!

IMG_6987

Here’s Callum looking very happy at school on Friday!

This weekend school has been open as the staff prepare their classes for their new children – we ‘move up and stay up’ tomorrow at KHPA which is an incredibly important day for all pupils and staff as our September starts tomorrow! Callum’s class teachers are setting up an additional classroom so there will be two ‘Heart’ classrooms and I cannot wait to see Callum’s face when he’s introduced to this amazing new space! I have no doubt he’s going to feel right at home. The commitment and dedication to get everything just right for Callum and his classmates is truly amazing which has been a huge factor to his progress since we returned from Canada.

Here’s a sneak peak at the classroom Callum will be walking into tomorrow morning…

So here’s to a further enlightening week tomorrow…!

#UnlockCallum: Naughty NOIT/Nice NOIT

On Thursday, the NOIT broke. Callum was restless and spent a lot of the day upside down.

Thursday: Naughty NOIT

Grampy Bill to the rescue: clever Grampy fixed the NOIT and Friday was the most wonderful day. Here are some observations from Callum’s teachers and Kim.

Like normal he’s been making noises: we’ve had the word “Mum”! When we suggest going somewhere, there have been a few “Nos”, but, when Callum agrees, he leads us to the location. We told him that the other children were doing PE and had balloons. Callum had a look at the balloons but didn’t want to join in, so he took Miss Savage to the trim trail. He then said “Balloon”! Callum is bonding really well with Katy (Miss Savage). This is such great news!

Callum pushed his dinner away, having eating almost all of it, to say he was finished! This lunchtime break there were lots of children on the trim trail and Callum shouted and flapped his hands because he wanted a turn. Callum ran away whenever he got close because of the amount of children.

During lesson time, a few classes went to the trim trail as a last day of the week treat. Callum kept going down but walking away or requesting hugs or breathing and leading us away. After sitting with Michelle singing and talking about some seseme street he completely calmed down. When the screen froze, Michelle told Callum they just needed to wait. Callum said, “Wait!” Truly amazing!

Friday: Nice NOIT

A wonderful video of Callum bonding with his teachers and peers.

#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!