Thurso mother starts online petition for respite care – ‘Life with severe autism is a daily grind’
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A Thurso mum who has been pleading for respite care for her severely autistic son has started an online petition that is quickly gaining momentum.
Elizabeth Jones said her son, seven-year-old Ollie, needs the care formerly in place at Thor House in Thurso which has changed its policy of providing respite assistance for struggling parents in need of a break.
"Thor House was specifically designed for disabled children and adults but these service users have now been ousted out in favour of children in care – who used to live in Avonlea care home in Wick," stated Mrs Jones.
In her online petition, which passed its initial target of 50 signatures just a few hours after being uploaded, Mrs Jones describes her predicament.
“I am the mother of a severely autistic little boy, age 7, called Ollie. We live in Thurso, Caithness, Scotland. Since the closure of Thor House in Thurso as a respite centre, there now exists no respite care provision for a radius of at least 130 miles from Thurso,” she writes.
“Life with severe autism is a daily grind. For me, it consists of a high level of supervision (at all hours), cleaning, scrubbing (yes, urine and poo), washing endless laundry, wiping and repainting the walls, cleaning all the glass windows and doors, as well as personal care for my son: dressing him/changing him/washing him, etc.
“Ollie is non-verbal, which means that he doesn't speak at all. He doesn't have a fixed method of communication either. He bites himself on a daily basis, leaving a permanent area of damaged skin. He can swing from an elated mood to a very agitated mood, and he makes loud vocal sounds throughout the day – regardless of his mood. He stims, sometimes until 02:00 in the morning.
“I manage Ollie's care alone, as his mother and unpaid carer, whilst also taking care of my 3 other children and running a busy house. I need and deserve some respite because if I become too exhausted, then we will all suffer – and Ollie's safety will be at risk.
“Ollie has previously managed to escape on a couple of occasions, which was very scary and emotionally intense for me, and once during the school holidays, he dropped a glass and gashed himself requiring stitches in hospital. Occupational Therapy has assessed Ollie several times, and he now has a specialist wet room at home and a specially erected garden fence to prevent him from climbing out.”
Mrs Jones finishes by saying that she and other parents urgently call on Highland Council to “reinstate the basic respite care services that Caithness used to have”.
Anyone wishing to sign the petition can find it at: www.change.org/p/bring-back-thor-house-caithness-sutherland-have-no-respite-care-services
Speaking earlier today (April 4), Mrs Jones says that the figure of no respite for at least 130 miles from Thurso needs to be increased to at least 211 miles. “There is officially no respite service for Ollie in Orchard House, Inverness, anymore either – not that I would have even taken him down there anyway. It is ludicrously far and too stressful for what is supposed to be respite.”
Ollie's symptoms include rocking, deep breathing, bouncing quietly in one spot with his hands over his ears, or making repetitive vocal sounds over and over. He also bites his hand, although “this is done out of frustration/anger”.
She says that Ollie's baby sister is showing autistic behaviour such as “stimming” in which she flaps her hands, bangs her head, and slaps herself on the face, head and tummy.
“I even phoned Orkney Islands Council a few weeks ago, to inquire if I could take Ollie up there on the ferry to access respite care. That's how desperate I am!”
