84 days later (part 2)

Happy Groundhog Day!

Is anyone actually keeping up with what day it is? I think it’s the weekend but I’m actually not quite sure, each day just slowly blends into the next one. What I wouldn’t give to go for a walk/run and see the view pictured above. I think once this is all over we’ll certainly appreciate the things we take for granted. The choice of which joggers to wear and whether to shave my ‘isolation’ beard off is becoming an overwhelmingly difficult daily decision! Oh the joys! The main thing is though we’re all safe and healthy so that’s all that matters at the moment.

Home Schooling

Home Schooling has taken a bit of a dive this week, everything seems to start off really well in the morning. The focus is there from Mila-Rose, Alfie not so much. We break for lunch then playtime then seems to last the rest of the afternoon! Absolutely no interest whatsoever and by 7pm they’re both asking to watch a film!!! Errr no, it’s bedtime soon and you’ll be off upstairs to get your PJ’s on!

Routine

As I said, Alfie’s been taken out of his routine and boy has it shown! Most boys with DMD have learning or behaviour difficulties. DMD is not just a muscle disease. The disease is caused by a genetic defect that influences the development of the muscles AND the brain. Children with DMD are missing a protein, called dystrophin, from both their muscles AND their brain. Without dystrophin in the brain, some areas may not function as efficiently, and this likely results in the observed learning problems that children with DMD have. If a brain develops without dystrophin it may not transmit information as efficiently as a normally developing brain. This lack of efficiency may impact upon the coordination of cognitive information; that is to say, Alfie may have difficulty processing cognitive information in a quick and coordinated manner, something that might be rapid and effortless in other children. As such, Alfie has difficulty when trying to process information which requires coordination of multiple pieces of information. For example, trying to process a set of instructions with many pieces. A possible real life example: We’d ask Alfie “Go upstairs, brush your teeth, put your PJ’s on and get into bed.” We’d then go upstairs and find he’s put the PJ’s on the bed. He didn’t do as he was told, but he feels he has, because he could only “get” part of what was said and knew it had something to do with PJ’s and bed. He can understand the parts of we said, it’s when it’s all put together that it is just too much. (Information source: Parent Project UK)

Boys with DMD have difficulty discriminating speech sounds. Alfie makes sound substitutions in his speech and has difficulty repeating verbal sounds accurately, and then finds learning to “sound out” words problematic. We have an Amazon Echo at home, but instead of ‘Asking Alexa’ he says ‘Balexa’. In general, the children with DMD show reading difficulties similar to those shown in children with dyslexia or reading disabilities, and often cannot tell some sounds apart from others.

Put this into the context of taking Alfie out of his usual school routine and trying to Home School not just him but Mila-Rose. To be honest Mila-Rose will actually sit down and do some of her school work and she’s an excellent reader and very creative with her writing. Maths needs a little bit of work but it’ll come to her in time. Maths was never really my strongest subject at school but through life and work experience you get by. You can imagine what the last 10 days have been like. It’s made with myself and Louise even more astonished as to why his EHC plan isn’t in place yet and the fact that he requires access to a one to one and repetitive learning. His attention span for each subject is roughly 10-15 minutes at the most then his focus waivers. This will lead to frustration and that then leads to behaviour where we encounter a massive meltdown and sometimes an aggressive nature which is very distressing. We have now decided that we’ll learn Alfie through play and use activities that will enhance his fine motor skills. He loves painting/drawing, cutting and sticking, jigsaws/puzzles, dancing/singing so I think this will be a positive way forward for the next 10 weeks. Don’t get me wrong it’s not all negative, Alfie is a very loving and sociable boy the majority of the time. His rote memory is exceptional, he’ll remember a place or memory from 2 years ago like it was yesterday! He can remember large chunks of information, like conversations from movies, words to a song etc. He’s a very comical little character and he doesn’t half make us laugh with some of the things he comes out with. He also has a little bit of an operatic voice when he sings so who knows where that will get him in the future.

Happy Groundhog Day!

See what I did there!! This week has been very tough mentally, last week was great as the sun was out and we could do school activities outside. Video calls were all the rage and the whole self isolation thing was a bit of a novelty. Week two has really been a wake up call and I hope this isn’t the shape of things to come. The last couple of days, I’ve been doing some Binaural Beats sessions on Spotify and also downloaded the CALM app on my phone. It’s a kind of stress relief meditation exercise. The first one was that good I fell asleep! I restricted myself to 20 minutes the next day! I think I will partake in some laps of the garden, perhaps 200 laps might equate to a 5k run. Even my steps have been well down on my Garmin. I’ve also been trying to focus on various Action4Alfie projects to keep me focussed. Later this month is Alfie’s 6th birthday and sadly we’ll still be in isolation. We were dreading the conversation with Alfie that he wouldn’t be able to have the Toy Story 4 party he’d planned but he actually took it quite well. We softened the blow by designing some virtual party invites so he can still share his birthday with his friends on Zoom. He’s now on countdown and asks every morning how many days it is until his party!

Alfie’s 6th birthday

So anyway, I decided to come up with a little social media campaign for Alfie’s 6th birthday. I’ve invited people to leave a video message on his social media pages and at the same time try to help raise awareness of Duchenne and the #StayHomeSaves Lives to protect the vulnerable. Now, when I have these ideas I visualise the perfect scenario of ‘A’ list celebrities getting wind of it, wishing Alfie a Happy Birthday and raising much the needed awareness of his condition. I actually even went as far in my head imagining having a video call ‘live on Good Morning Britain’ with Piers Morgan discussing how I came up with this amazing campaign to make Alfie’s birthday extra special. It would be followed later by a video chat with Holly Willoughby!! Well we can all dream!! (You see what self isolation does to you, we’re not even 2 weeks in!). So anyway I went ‘live’ with the campaign and let’s just say it’s taken off very slowly!!!! https://twitter.com/Action4Alfie/status/1245301561716355072?s=20

Unfortunately during these unprecedented times, people are more interested in sharing viral videos/memes of people doing stupid things whilst in lockdown! Frankly they are just becoming a little bit boring! I find it really frustrating when you’re passionate for people to see what you’re trying to do doesn’t come to fruition the way you envisaged it. Then again, maybe social media is a place for other people to escape from the real world. Imagine if one of David Beckham’s kids had Duchenne or say, Prince George was diagnosed with it? We’d all be reading about it, social media would be an outpouring of grief and everyone would be commenting how awful it is. We’d all know all about how it affected them and their families. The support network would be there and I’m sure the standards of care would literally change overnight. Now you may think I’m just feeling a bit sorry myself and maybe I am but this is what you come up against in terms of trying to make people take note. I’ll keep plodding on, I won’t give up the fight and I certainly won’t stop trying to raise awarenesss. My drive and determination will always be there and it will take just one high profile person to share or retweet a post then it will snowball!

Weekend luxuries

It’s now Saturday afternoon and we’re trying to make the weekend, feel like a weekend. During the week we all sit down and eat together which I really do enjoy. Tonight though we’ll eat when the kids have gone to bed! We’ve ordered in our luxury items tonight, it’s going to be like when they all sit down for the big feast on I’m a Celebrity, Get Me Out of Here! I’m having Rib Eye Steak, Chips, Asparagus, Mushrooms and Peppercorn Sauce washed down with a nice glass of red. Louise is having a Chinese banquet, hopefully there won’t be any bats present! I’m looking forward to relaxing and having a drink tonight. I think when you’re in this isolation situation, it could be quite easy to fall in the trap of having drink every night. By week 12 though you could have a massive problem that wasn’t there at week 1 and we certainly don’t need anymore problems in our life so it’s a weekend tipple only for us. Once I’ve devoured my Steak, I’ll be ‘heading out’ to catch up with my mates on Zoom. I’ve found this really good to wind down and have a sense of normality, it’s good to see familiar faces and to chat or have a moan about the week gone by.

Which reminds me, earlier this week we celebrated our 8th Wedding Anniversary. I looked into deep Louise’s eyes, my heart fluttered, I felt a connection, something deeper, something magical, I was transported to another place and I thought, blimey these binoculars are brilliant!

I’ll leave it at that for this weeks isolation installation!

Have a great Groundhog Day!

Stay Safe. Stay Home. Stay 2m apart.

Kieron

#DuchDad

One thought on “84 days later (part 2)

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