Today I had a 15 min catch up with soldier’s teacher, he has only been in school 50% of the time since school returned after summer. A mixture of illness (bowel related), tiredness (gene flaw related) and just not wanting to go. He refused his last two respite visits too. He’s a big lad now so there is no gently lifting him to where he needs to go …. so if he decides he is not doing something he drops to the floor and he doesn’t do it… Mummy bear here has been a bit upset since thinking about all the challenges he/we face:

  • what happens if he continues with a poor school attendance? This will hugely limit his learning. He already had 3 years in primary where he had poor attendance due to sensory issues which had a significant impact on his opportunity to learn.
  • what happens when he is at home and mummy bear is too tired given her recent heart condition to teach him when he is home? Does home become the easy option?
  • what happens if he loses respite as for the second time they want a review on whether he should be supported at home?
  • what happens if he has the same problem accessing services as an adult? What kind of life will he have?
  • what happens if his sensory issues and severe learning disability stop him accessing medical treatment? This is a HUGE worry
  • he has struggled to wear his oxygen cannula at night as he hates things on his face, his night time oxygen stats are falling and we can see he is more tired, where does this end as his brain, heart and body are starved of oxygen for so long?

What happens when mummy bear allows herself to worry? worries that are always there but come rushing to the fore when a statistic brings things sharply into view!

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