"Heave" "No Heave"

Tuesday, April 28, 2020 Mary Busk

For a while now, Alex developed a habit of saying “heave” when he wants to man handle us in some way. Having the strength of a young adult and the mind of someone much younger brings out these interesting combinations of fun and danger. We say “no heave” which is duly repeated and that changes the subject, most of the time.

Although many noises and loud voices upset him, he likes to make his own noises and also listen to noises he likes, mainly through You Tube videos of his favourite cartoons. Looking at old family videos last weekend, we can see how little has changed. We are still listening to Maisy, Thomas, Percy the Park Keeper, Wiggles, Pokemon and Angelina Ballerina, and more, and the same clips too!

Alex is now at home from college, where he was not totally happy, self-isolating, shielded, settling into a routine around mealtimes, including helping to prepare those, and his physio exercises. We have added to that with sand and his tractor which he likes to bury, a weighted blanket and his favourite puzzles.

Everyone realises that he is best at home in the current circumstances, where it is quiet (except for noises he can tolerate), he has space, can potter, is not annoyed by others he is not keen on and has a routine that is personalised around his needs. We have to try to maintain that calm alert state, avoiding the angry outbursts and hand biting as much as we can.

We have had to do this before when things all became too much for him at his secondary special school some years ago. There was some help then, but it was very invasive in our family life.

We would be concerned if we were not to be able to look after him now at home. We are lucky our elder son and youngest daughter, studying for her A levels, are also here. We are trying to work. Are siblings and carers valued enough? Is there enough understanding of the personalised care needs of autistic young people?