Quality of Life?

Be it right or wrong, being any parent is the hardest job in the world they say, but being the parent of a child with special needs is another order of magnitude tougher. I have nothing to compare it to  as we only have Joshua, who has very specific needs, but we are thankful that he does not have any behavioural difficulties to contend with. In the main , he is cooperative, affectionate and sociable, which are all positive characteristics that make our family life, with a disabled child, tolerable.

Yes we have to be on constant ‘red alert’ for seizure activity, Joshua has severe learning difficulties , has reduced mobility, has very limited language and is incontinent, but his positive, laid back personality shines out over and above those issues. I may be biased as his parent but Joshua’s sense of fun, when he is feeling well and awake, is one of his greatest assets and his affectionate nature wins him many fans whereever he goes.

As Joshua is in his 15th year, we are spared from some of the teenaged-horrors that his peers are putting their parents through : we do not need to worry where Joshua is at night and who he is mixing with. Joshua will not bring us the worries of alcohol or substance abuse, is not vulnerable to the many traps of social media or going to have big bust ups with friends and I am not aware that he suffers from any form of mental illness.

We were told before Christmas that the Vagus Nerve Stimulator helps to reduce seizures in around one third of epileptics and that in the USA, it is also used as a remedy against depression. The epilepsy nurse pointed out that even if it did not help with his seizures, the VNS could make Joshua happier. I considered that suggestion for a while, but came to the conclusion that I thought, particularly when he is free of seizures, that Joshua is inherently happy and I resented the suggestion that an electrical device fitted in his neck, might make him more contented with his lot.

Joshua shows no signs that he is frustrated with his poor mobility or his inability to ask for things that he might like to do or have. He takes most activities in his stride and accepts change well, adapting to changes in his routine. To our continued surprise, Joshua appears to be delighted by the same old favouites of Shrek, Lion King and Madagascar and he sits glued to the films as if he has never seen them before, beaming with joy. There was no doubt that he enjoyed Saturday’s pantomime too and for this, and many other clues that he gives us, I am confident that Joshua enjoys his life and shares his own joy , regularly and generously, with others.

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