The Stick Insect
Andrew has always been like a buzzing skinny insect, always in your face....so he gained this affectionate nickname. At one stage, my husband called him Stanley after the famous British door closers, then he was Houdini during his escapologist stage.
He had a shocking diagnosis of Profound Autism, which is WORSE than severe autism...at age 3...when his diagnosis was extended. I would say that he has improved muchly but I would say he has gone down the slippery slope to severely autistic, not that it makes an iota of difference to me.
Since I wrote the piece for Noticeboard a lot has happened......
Every long Xmas holiday, Andrew got anxious when the bus didn't come, hence no school....and a few years back was no exception. His only trouble then was that his anxiety hung around much longer and he was having outbursts, so we tried Risperdal....it's was a brilliant success and it really suited him, especially as he was tube-fed due to his impaired sense of hunger and thirst. Risperdal which, unfortunately leads to appetite increase (and often binge-eating) caused him to take an interest in food ORALLY....so he started tucking into odd combinations like tuna, parsley and parmesan. Raw onion is still another gourmet food for Andrew.....but his breath pongs so badly, a quick hug and a kiss on the cheek suffices if he's been pigging into a bowl of the stuff! Halitosis+++ He gained a bit of weight and condition too and this seemed to help his immune system; he catches every bug that goes around.
He used to go into the Kids annually for his gastroenterology appointment and the annual change of his Bard Button. They all leak eventually as the plasticisers in them deteriorate...they are brilliant devices and GT bolus feeding is deadset easy. We nearly lost him years ago, pre-GT, due to severe malnutrition and chronic dehydration....sunken eyes, bones poking out, listlessness.
Now, as an adult, he has transferred to the adult medical system and is under Monash, who supply his feeds under the HENS scheme. He recently had his first day surgery there (Bard replacement) and it went well. There was an impasse where I thought we'd never get him out of his clothes and onto the trolley....but we did it. We took photos for his photo board - so that next year, he'll know in advance that he's going into the gastroenterology unit. Just as we do for all other aspects of his life. Activity sequencing boards are brilliant.
After several years of living in a temporary CRU, Andrew moved into a new purpose-built CRU and he gets wonderful care. Heaps of activities. Bowling, swimming, pottery, trips to the beach, snow, picnics, discos, barbeques...
Here's Sarah (below) - auties are very canny at discerning the people that love them and so he's very happy where he lives now.
Peter is one of my favourite carers of all time.
Not to forget Nikki, who now lives in the states. With her red hair!!
Here's Andrew sending a bowling ball down the alley. At least we know it's not going backwards into the seats!
We bought a new 26" ladies bike and my clever other half sabotaged two small BMX bikes to create a brilliant set of outrigger wheels. Lots of welding. It looks fantastic and he now goes out for frequent rides in parks with the staff.
Andrew has tried rollerblading.
He still has GT feeds - for a few years, he drank his formula orally but now he refuses. He recently came off Risperdal (needing other medications for mood swings) and I wonder if his appetite decreased because of this.
Andrew used to go on outings in David's land rover to Toolangi, etc....with the Land Rover Owners' Club. He had a ball and the more difficult the terrain (and David is no wuss - having driven landies for 36 years), the happier he was.....in fact, the more the landie leaned over - the more he rocked! Wonderful how a total lack of fear has been a bonus here.....
© Debs 2003