Last night was a little poor in terms of sleep as Callum was awake from 1-4.30am, however he eventually fell back to sleep on me for a couple of hours thank goodness! This has been the first time since we’ve arrived in Canada he’s woken in the night and I am hoping it was just a ‘blip!’
Today was Father’s Day so we made an early morning call to Hamish to wish him Happy Father’s Day as well as see Euan give him his thoughtfully hand made card. Euan really does have an astounding way with words and we were all touched by his personal message to Hamish. We are so incredibly proud of Euan, for a boy who is only 9 years old he has coped admirably with our quest to unlock Callum and thrown himself into it with his own fundraising efforts at school. He’s incredibly sensitive and we have always encouraged him to embrace this quality which I think must help him understand, express and then self-regulate his emotions when needed. He does this whilst maintaining his quirky sense of humour!! Today Euan and his good friend Leo set up their own blog which was a perfect example of his sense of humour which Leo seems to totally understand!
Today we were visiting Desmond at his home for a Canadian brunch of 4 different types of bacon, french toast, Canadian maple syrup, Canadian beans and the most succulent berries. Callum was not his usual calm self this morning following his bath and the attachment of his NOIT. He wasn’t too bad but there was a slight edge to him that I couldn’t remove despite many words of encouragement and praise. I couldn’t put my finger on what was wrong but I knew it was ‘different’ from the Callum I have witnessed this week. He seemed slightly agitated by his own skin again.
However, he was still following instructions, taking in some of his surroundings and aware of some of his actions. Callum just didn’t seem to have the clarity he’s demonstrated throughout the week and appeared unsettled. We visited the grocery store and purchased a plant for Desmond for his garden to say thank you for an amazing first week. Callum pushed the trolley really well and negotiated the people walking towards him, although he clearly decided the row of canned peanuts could take a hit, they made a great sound as they clanged to the floor!!! He was also able to pick up the juice and throw (literally!) it into the trolley upon my requests. He was in control and seemed happy to comply with my instructions. I just couldn’t shake off the feeling that it was still ‘different’.
We drove to Desmond’s house and Callum definitely got more and more excited the nearer we got. A beautiful deer ran straight in front of us as we drove to Desmond’s, it was so elegant and graceful and within a blink of an eye was safely across the road and grazing in the next field. Just stunning!
When we arrived at Desmond’s house we met his wonderful wife, Jo-Anne, his step-daughter Alanna and her handsome son Aiden, his Dad Ron, Mum Dr Cathy as well as Beth Currie Shier who is the Director of NOIT Research. Desmond and Jo-Anne’s home was so calm and we all instantly felt relaxed. I immediately told Desmond ‘something’s different today Des, can you see it/feel it?’ Desmond of course could. Callum didn’t embrace Desmond in his normal way, he struggled to focus but it was still an improvement from when we’ve visited friends houses back in the UK when we wouldn’t be able to sit down because Callum would require constant watching as he paced people’s homes.
Desmond took Callum upstairs to meet his dog and interestingly his dog started barking – apparently Des’s dog doesn’t bark in that way and we put it down to the NOIT’s tinging sound. Suddenly Des called from the stairwell ‘I think I know what’s wrong and why Callum’s different, there is a crackle in the ting sound!’ Beth immediately jumped up and went to check the NOIT, she gave it a clean and asked Desmond to observe Callum for a further minute to see if that was the problem.
We sat down to brunch and then the chaos from our past returned!!! Callum was like a wild animal, unable to sit on his bottom, grabbing and squashing fistfuls of berries, grabbing my hair and climbing over me as well as leaving a trail of destruction on the table – The table and I looked a state and my anxiety levels rocketed! Thankfully Desmond came to my rescue and whisked Callum back upstairs and calmed him down through the use of his breathing activities. I was in a house I had never visited before, I should have felt embarrassed and mortified at the state of both myself and the table, however I was surrounded by a small group of wonderful individuals who just ‘got it!’
Dr Cathy and I had spoken earlier this week about the judgements of others that parents of children who are ‘different’ have to endure day after day. Hamish and I have experienced this countless times, it’s heartbreaking and disempowering because we have learnt that no matter how many times we try to explain ‘Callum really does not mean to do this’ they just don’t ‘get it’ and the judgement hits our core (and my heart) every single time. Instead of judging, everyone sat round the table trying to work out what was going on, they knew something was impacting Callum’s neurological function. I felt humbled by their actions and words of wisdom – imagine if everyone thought in this way! Beth investigated the NOIT further and she found one of the wires had come lose – the NOIT was broken! The sense of relief I felt was immense and yet again we had further evidence of the positive impact the NOIT was having on Callum. So, it was all systems go…within a few moments our bags were packed, we said our goodbyes and drove straight to the Oakville Success Centre to collect a new NOIT. Within minutes Callum’s whole body relaxed a calm returned…phew!
As we drove home I reflected on this experience and realised Callum was unhappy being back in this chaotic world and as Desmond stated ‘Callum wanted it to stop!’ This is remarkable when you consider a week ago this foggy/chaotic world was Callum’s safe place, where he would escape when he didn’t want to comply or acknowledge us. Now, through his behaviour he was telling us to make it stop! He IS now ready!! A slightly traumatic hour or so has given me so much more belief that we are on the right path, so onwards and upwards!
I enjoyed the most enlightening conversation with Beth and Dr Cathy who explained the NOITS origins and how Ron Davies makes every NOIT personally by hand. Beth and Dr Cathy together with Ron have tried to spread the success of the NOIT to many medics, speech and language therapists and other professionals but unfortunately they usually get ignored. Beth explained that since our VLOGs/Blogs the NOIT research website has received over 60 hits in under 48 hours – more than they’ve had since it’s inception in 2011. This is incredible and makes me incredibly proud of Callum…just imagine if Callum can help other children access the NOIT through his own journey! Beth and I also spoke about how Ron is constantly updating the NOITs to be even more efficient, however she will explain this in her own words when I interview her next week. She is so articulate and passionate about the NOIT.
So, we returned to our hotel, covered in berries and slightly worn out but thankfully Callum regained his calmness and fell asleep peacefully at 7pm.
Here’s to a good night’s sleep and a great day tomorrow!
XXX
#unlockCallum
#UnlockCallum 