Children, as we know, are extremely observant of their surroundings, but we have to remind ourselves that adopted and Looked After Children have already suffered trauma. They have already encountered loss in which they lost everything, often multiple times. This makes any kind of health condition hard to navigate as this will have a huge impact on the child as they witness the deterioration of a loved one. It cannot be ignored or hidden. Children are extremely smart at reading emotions.
We have never lied to him about my ill health but have limited what he knows about Motor Neurone Disease (MND) and the eventual outcome. He only knows what we feel he should know, so as not to worry him. For now, he knows Dad’s arms don’t work very well, that carers visit him once a day and that I use walking aids and a wheelchair when going out. He has been inquisitive about the visible changes, and we try to respond in such a way that he will understand.
My first symptoms were visible in late 2020/early 2021, which is when he would have seen me having difficulty unscrewing lids and bottle tops. We did not know the cause, but he would ask if I was OK as he could see my struggle. I remember reassuring him that I was fine and that my arms and hands were tired. Fast-forward 12 months and the inability to open things had become greater. In March 2022, I received my MND diagnosis and the first few weeks were unimaginably painful, but I didn’t let him see the pain. Multiple medical appointments followed and lots of home visits were made. These were always scheduled for during the school day, so he didn’t have to see the many services I engaged with.
When the strength in my right hand/arm had deteriorated further, I remember one day that Little Man said “When your arms get better…”. With a huge ball of emotion in my throat, I managed to say “they won’t darling, but it won’t stop me”. I wanted him to know that nothing would stop me living life. I just do things differently. My symptoms have progressed over the last few years, and he asked more about my arms and being fed. We have reaffirmed that they won’t get better we instead showed him that we don’t worry about what I can’t do, we instead choose to focus on what I can.
Whilst we may think that he may have brushed these comments off, it became clear he had been internalising emotions for some time. He came home from school one day, and he was unusually withdrawn and distant. I asked him if he was OK, to which he said he was, but he became more tearful. It took some time to get him to open up, but he shared that others in his school had made fun of me about me being in a wheelchair. We didn’t believe there was any genuine intent to upset him but rather considered that children of his age are unlikely to have seen many disabilities. We reassured him and put his concerns at ease and took this opportunity to educate. We engaged with the school and highlighted our son’s concerns. Several days later, during an assembly, they highlighted disability and inclusion across the entire school. We couldn’t ask for me and there have been no further incidents.
This summer, we were able to show him the Paralympic games and that disabilities of all kinds did not stop these individuals from competing. They didn’t worry about what they couldn’t do but focused on what they could achieve. We believe this really helped him to understand disability and that there are many people with disabilities. I have also ensured that we still have fun. I remember collecting him from school on my mobility scooter, and he screamed excitedly, “WHAT’S THAT?” We had loads of fun on the way home as we raced each other. I’ll do the same when the power chair arrives. Disability need not be dull.
We know the road ahead will be tough and emotional for him, but we take it day-by-day. We will ensure he feels that he can express his worries and that we engage with the relevant services to professionally support us all. We are so very proud of everything he has navigated so far.
Much like MND, the road ahead is unknown and it will be very hard for him to watch me deteriorate. We allow him to share his worries as we don’t want him to internalise those emotions. We will never lie to him about what he see’s. This is why having the ability to ‘bank’ my voice by reading ‘I Will Always Be Me’, narrated by yours truly. Have a tissue to hand as its an emotional read/listen. The opportunity funded by the MND Association.
This blog has been written, formatted and published using the 'head control' software on my MacBook Air - a vlog will soon be shared to show it in action.
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