insiderblmDuring a visit to The Orpheus Centre, a college in Surrey which provides therapy to disabled young adults through the performing arts, a loud and unexpected noise distressed Harvey and he threw his head repeatedly against a door.
Katie told him to count to 10 to control the stress but another noise sounded and he kicked out. The staff encouraged him outside where it was quieter, but it signalled the end of the visit.
Katie will often touch Harvey or speak with him to maintain his calmness. The duo banter constantly and have scripted phrases they say to each other – when Harvey says “Hip, hip,” Katie replies, “Hooray”.
The scripting is sometimes considered similar to stimming (self-stimulatory behaviours) that many autistic people like to use to relieve anxiety or show happiness.
When they visited National Star college in Cheltenham, Harvey was distressed and worried he would have to stay overnight.
He didn’t want to get out of the car and whimpered. Again, Katie reassured him and encouraged him to wear his ear defenders. Because this isn’t a regular day for Harvey, the teacher, Alice, showed him a “social story” with pictures of what he could expect from the hours ahead.
She decided to begin at the end with “goodbye” – so Harvey knew he would go home.
It was a difficult start, but when he visited the flats the students live in – with their own bathrooms and kitchens – and got to watch frogs and trains on a big screen in a sensory room, he was won over.
He described the college as “wicked” and excitedly said “yes Mum” when asked if he would be happy there.
Katie says: “The reason I want him to go full-time residential is because some weekends they might have disco nights or bowling and he might want to go and do that and not just come home to me. It gives him a choice.”
But it is far from a done deal. It relies on much administration and the local authority agreeing to finance it.
Lynette Barrett, chief operations officer at the college, tells Katie: “We would put in a funding application to your local authority and that application would detail everything that we are going to provide for Harvey.
“For someone that is a part-time day student that may be £15,000 to £20,000 a year. For a student that is full time, all-year round residential with really high health care needs, that could be up to £300,000 to £350,000 a year.”
It will be the Prices’ local authority which makes the decision on whether to fund it or it may decide somewhere local is suitable.
The approval depends on Harvey’s needs. Katie must ensure his Education Health and Care Plan (EHCP) – a legally binding document in England detailing the support he must receive – is up to date.
“Everything about Harvey is in that plan,” she says. “It’s so time-consuming and you feel like you’re alone, but you’ve just got to get on with it.”
Katie must detail Harvey’s education attainments, health problems and the medication he requires, as well as the tasks he can complete – whether he can cook for himself, dress, make the bed and wash.
The thought of Harvey leaving home is daunting for Katie, but a move she wants to pursue.
“As much as you smother your kids and you want them with you all the time, sometimes you have to let them go, just give them that bit of space to go and explore.”
This year has been challenging for the family. Harvey is classed as extremely clinically vulnerable and has been shielding during the pandemic. He also spent some time in intensive care and his health is a constant concern.
“With Harvey the future is unpredictable, but I’ll make sure that he’s in a place where he thrives on happiness, excitement, joy and he looks forward to waking up.”
Katie and Harvey have applied to National Star. They will find out in March if they have been successful.
