Light & Shade

There are a few benefits to having a son with special needs, it is not all doom and gloom, as I try to illustrate in my blog. The key positives that I recognise are:

  • Joshua is incredibly loving; I must get more than 30 hugs a day. His face lights up when he sees me and I am treated to regular bear hug squeezes. What other 21 year old lad would be so affectionate to his mother and in public too?
  • For the majority of the time, Joshua is a happy soul who does not worry about anything. He takes life in his stride and adapts so well to new situations. He loved our recent roadtrip, you would think that we stayed in hotels all of the time, the way he adjusted to living in one room and going downstairs to a restaurant for breakfast. He has given us no concerns over how well he has settled into Daycare, he has fully embraced the new situation and he clearly loves going there.
  • We do not have to worry about Joshua leaving home, that gut-wrenching time when your child heads off to make their own way in life, maybe off to university or start a new job working away. I will always be able to protect my son, as he will never be far away from me and we will be in control of his life choices, making them in his best interests of course. I do not have to worry about his getting in with the wrong crowd or getting into trouble with alcohol or drugs, worries which must occupy most parents’ minds.
  • We celebrate Joshua’s successes everyday, he makes me so proud that he has defied his diagnosis and grown into a handsome, sociable young man. When he was born we were warned that he may not walk, talk, see or hear. Joshua can do all of those things, to a certain level, but I love his cheeky , bright personality that makes me proud when I take him out. His smile lights up a room and he makes people happy. Yesterday in a café, an elderly lady stroked his hair saying that she loved his curls. He did not flinch or object, he just beamed at her and she smiled back. I love how he relates to people

There are however, definite downsides that I should also address :

  • Joshua requires care 24/7 ; he needs someone to dress him, feed him, change him and support him when he walks. The unpredictability of his seizures means that you have to watch him all of the time, looking out for telltale signs that seizures might be on their way. His care continues through the night; last night for instance he went straight to bed at 9.30pm when we got in from a lovely pub meal. I went to bed just after 11. At 2am I heard him moving about downstairs and he let the dogs out of the kitchen so they were running around the house, delighted to be released. I put everyone back where they belonged and tried to get back to sleep. At 4am I heard him on the landing again, so this time I snuggled in next to him in his bed, but at 5.15 he was climbing out of bed again. I offered him some Weetabix and put him back in his bed, when I brought it up to him, he was already fast asleep. That kind of broken sleep is not unusual.
  • His epilepsy spoils plans and wipes out entire days. He cannot control it and his seizures are better managed, and less frequent, than they have been in the past. But even so, it hangs like a black cloud over us, sometimes threatening but passing by and other times, taking the joy and energy out of our son, so that he is completely spent and lifeless. It is a cruel condition and it is one that we have accepted that we will be living with for the rest of his life.
  • Joshua has been deprived of a ‘normal’ life : he will never be fully independent, get a job, study or leave home. He is very attracted to young ladies, trying very hard to capture their attention, but he does not have the capacity for a relationship, so will never marry and have children of his own. The future that we might have envisaged for him – like the one we both had when we left home, went to University, got jobs, got married and had a son – will never be his reality.

But the real blessing is that Joshua seems content with his lot in life, if he is frustrated by his limitations, he really does not let it show. We had dreams for Joshua’s future but I doubt that he did, so he is not disappointed. Joshua’s concern is with the here and now : what am I doing and what will I be eating? seem to be his main priorities. Joshua is nowadays taking more control over what he is doing and eating, by making suggestions. He sat beautifully last night for 2.5 hours in the local pub and ate up almost all of his scampi and chip supper, but at 9pm he made his feelings very clear by repeating “Bed!” endlessly until we heeded his request, paid the bill and drove him home.

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