I’m on bended knees praying our lives don’t get any tougher, says mum who is carer for autistic son

“I’ve always tried to find a positive no matter the challenge, but I’ve had to dig deeper than ever before (during the pandemic) to muster the strength to be the best mum to Nathan,” says Co Tyrone mother Daphney Scott.
Daphney Scott and her autistic son NathanDaphney Scott and her autistic son Nathan
Daphney Scott and her autistic son Nathan

Daphney’s teenage son Nathan is autistic, with a severe learning disability, severe challenging behaviour, Sensory Processing Disorder and PICA - an eating disorder in which people compulsively eat nonfood items. He is also non-verbal, doubly incontinent and experiences sleep difficulties.

“He is a 15-year-old adult-bodied baby,” says the Cookstown woman, “he requires round the clock care, guidance and safeguarding.”

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“We already lived an isolated life, but Covid restrictions intensified everything. Nathan hasn’t seen his grandparents, aunts, uncles or cousins who live 40 miles away, since the March lockdown...As he is non verbal, everything is a guessing game as to how he feels, but I am sure he wonders where everyone has disappeared to.”

Nathan, 15, has a range of complex needsNathan, 15, has a range of complex needs
Nathan, 15, has a range of complex needs

Daphney, who is chair of the Dungannon & District Branch of the National Autistic Society NI, based in Coalisland, adds: “Nathan is no longer the happy child I once had. He has been robbed of so much and as a mum this is very difficult to not just watch, but live alongside.”

Despite her innate positivity, Daphney says “everyday is exhausting”.

“My complete wellbeing has been hit hard. Fact is, I’ve been sleep deprived for almost all 15 years of Nathan’s life as he has always had sleep disturbance.”

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And, because of the pandemic, there as been no respite for the family.

“Nathan is entitled to four overnights per month in a respite centre in Ballymena,” says Daphney. “Unfortunately between lockdown and another decision made by the NHSCT (Northern Health & Social Care Trust) my boy had nothing outside his home for six months. This has had a huge impact on his complete wellbeing and heightened negative behaviours which is understandable to me.”

To compound matters, Nathan has now also been diagnosed with epilepsy.

“A few weeks ago he could have died on our kitchen floor,” says Daphney.

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“I have no idea how I managed to save him. We always had life challenges, this new diagnosis is a threat to his life.”

Daphney believes carers have been forgotten about by politicians during the pandemic.

MLAs brought the role of carers during the pandemic up a few times during their meetings, but there was never any follow up that benefited me directly.

“I lead a very lonely and stressful life the majority of time, but these past six months I am becoming more isolated.

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“During the lockdown the government deemed carers as essential workers, yet all I receive is basic Carers Allowance which is a slap in the face really. “Unpaid carers are always taken for granted and are completely undervalued, our government should be utterly ashamed of the way we are mistreated.”

She adds: “Financially, I am sunk. My family, not through choice, is hand to mouth daily on benefits. These don’t cover the daily outgoings we have. Anything viewed as special needs is accompanied by a special price tag.

“The NHSCT provide Nathan with the maximum allowance of five pull-ups (disposable pants) per 24 hours. My son has these used by lunch! His 12-week supply last five weeks. Due to his stature I have to buy XL adult pants which cost an average of £10 per day.”

Daphney is thankful to the support of her close friends, her family support officer with the National Autistic Society NI, Nathan’s social worker and her family, who have been “a rock from afar”, but the challenges remain.

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“Nathan has two things he enjoys outside his home. One is going to respite and the other is being driven around the country, which can be as early as 6am. “We have a morning, afternoon and evening drive which costs between £15 - £20 per day on fuel. I then spend my respite time catching up on housework and laundry.”

Daphney says her financial situation has been so critical, she had to resort to food banks.

“The benefit system didn’t change to help those in great need and I had to ask for help from food banks for myself and husband as Nathan’s needs always have to be met, plus he has certain foods he will only eat, which isn’t uncommon amongst autistic individuals.

“I have accumulated debt and have no idea if I’ll ever be in a position to repay what I should be paying. We are in temporary accommodation at present and hope to return to our forever home which is under going adaptations for Nathan at present in Jan 2021. I have no idea how I am going to decorate and put floors down when I need so much equipment for Nathan which will help save his life.”

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Daphney says all the financial and emotional pressures, on top of trying to do her best for her son, is “crippling” her.

“I’ve always been proud, but right now I am proud and poor. I have always lived by the saying ‘A tough life is still life’ and right now I am on bended knees praying that ours doesn’t get any tougher, as I don’t think I could carry much more. I desperately need help and I need it sooner rather than later. “I can only hope and pray I can get myself back on track again, as I need to be in good health for my lifetime commitment to my son. What I would really like to know is, who cares for the carer?”

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