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Positives of lockdown

I cannot believe we are shielding again. We shielded for 5 ½ months of 2020, and we have entered 2021 doing the same.

Obviously, shielding is one hundred times harder for some families than others. My heart goes out to single parent/carer families, those who have grown up children who have flown the nest or those who do not have access to the PPE supplies to enable PA’s or support workers to deliver care safely. I’m sure I have missed many others.

However, during our shielding journey we have found some true positives.

* No face-to-face schooling has meant we have managed 14 months without a chest infection. This means 14 months without the need for nebulisers, antibiotics or inhalers. 14 months without 4-times-daily chest physio. The autumn/winter months are usually so hard for our Boy Wonder; we are continually monitoring breathing, chest sounds, secretion colour and consistency. However, 2020/21 has allowed us to not be so obsessed with it. There have been no signs or symptoms of anything remotely chesty. For a child who usually picks up every single cold, cough or flu like symptom from his friends at school is a huge positive.

* As we haven’t been running around to appointments, meetings and training courses we have been given the gift of time. Time to pause and reflect. Time to gather our thoughts, make big decisions without rushing. Time to spend together. Time to work on our own wellbeing, relationships and all-important life story work. Time to just be, chill and relax.

* As everything has gone virtual and all professionals have had to adapt to modern technology, we have developed the working relationships with the professional team. To check in with Boy Wonder, the professionals need to schedule a call, PPE-d visit or video conference. They cannot physically see him as they once would and the communication between the professionals involved in the network has vastly improved for the better and is even more important than ever before. This has given us a more streamlined approach which can only be for the better!

* The highlight of the summer, for us, was being able to swim every day. For Boy Wonder, hydrotherapy is a vital therapy. The warm water of our hot tub allows him to relax his body knowing that it will behave. His breathing regulates, he is able to be supported and then feel the weightlessness of floating. He is able to lay back and look at the sky, watch the birds and just be a child. All children love the water and for Boy Wonder this is no different.

* Rain or shine we have been able to walk, explore and take in the nature which resides in our beautiful village. During normal life we spend a lot of our time on the road, in meetings, appointments and therapies. Over the last few months, we have been able to just walk, explore and relax. Not worry about what time we have to be somewhere, and then taking time pressured walks. One of Boy Wonder’s favourite places is the woodlands at Centre Parcs. Through the shielding process we have discovered how much our local area has to offer him. The birds, tree’s, animals, bright summer flowers, long grass, feeling the wind on his face. All a sensory experience for him, but also his favourite place to be.

* We have had more time to focus on therapy goals. Boy Wonder has stood in his standing frame more than he ever has; he has spent time on his wedge for longer than ever before. He has found joy in side-lying, bouncing on a ball, bench sitting. Spent hours and hours in the hot tub and on his Zoom / Teams music therapy sessions. As a family we have worked hard on his communication goals and as a result he has progressed further than we ever thought he would. All things that were time constrained activities or activities only delivered by education before.

There have been some incredibly difficult times during the last 12 months. Hospital admissions are incredibly daunting in this new COVID world. Important appointments for physical equipment have been delayed. We haven’t been able to spend good quality time with either of our extended families for 12 months. Contact has been via video calls for the majority of the last 12 months. All having an impact on relationships and our lives.

We have tried to live our best lives, in our house, garden and village and make the best of a bad situation.

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