Mother of three makes desperate plea for help with care for autistic daughter

Donna Oakes and her autistic daughter
. Picture supplied
Donna Oakes and her autistic daughter . Picture supplied
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A MOTHER-OF-THREE today made a desperate plea for help as she told how her autistic daughter held one of her sons hostage with a knife during a “meltdown”.

Donna Oakes described how Casey, 15, refused to let her back into the house, where she was alone with eight-year-old Noah, and then grabbed a knife. Police had to be called and Casey was restrained before eventually calming down.

But the incident was just one example of the crises which can flare up without warning at almost any time due to the teenager’s condition.

And Donna said she feared unless she got more help, the authorities would find 
themselves holding an inquiry into how a tragedy could have been prevented.

She said: “I love her and I want to care for her but I need some help to do that. She needs to be at home – I don’t want her to become part of the system. But she needs some sort of respite away from me to lower the chances of meltdown and try to help her to control her emotions better.”

Donna said the hostage incident happened out of the blue as Casey and younger brother Noah, eight, were watching telly.

“He was on his console, Casey was watching telly and being nasty to him. I told her to stop being nasty, but because I checked her that was enough to trigger her and she started freaking out.

“I went to bring in some laundry and when I came upstairs again the door was locked. I knocked on the door and said ‘Let mummy in’, but she said I wasn’t getting in. She was going up the scale and every level was being reached. I was worried about Noah.

“She picked up a brush or a mop and was swinging it about, then she grabbed a knife.

“I had to phone the police. They came and they were so concerned I could lose two children in a matter of seconds they were trying to kick my front door in – it took a fair bit to get into the property. They restrained her – they put handcuffs and leg straps on.

“Noah was upset, but we’re used to her behaviour and once it’s finished it’s done, we don’t dwell on it, but we do talk all together about how to avoid it in future.

“The calm Casey is the sweetest, nicest wee girl you could meet and the politest wee girl too, but the angry one . . .”

Donna said Casey was not aware of cause and effect in her behaviour.

“When she calms down afterwards, she will say to me ‘I don’t like this, mummy, help me – I don’t want to be like this’.

“It can start for no reason, just for nothing – or it could be she has had a bad day at school or someone has said something to her on the way home.

“It’s so unpredictable, it’s hard to find a trigger because everything’s a trigger.

“It starts off with verbal. 
Rather than go and chill in her room she will then challenge and follow you – I’ll just be getting on with housework or making the dinner and she wants to talk but doesn’t know how to. She gets anxious and she gets angry, then it goes to objects being thrown and then physical assault – biting, punching, kicking.”

Although Casey is 15, Donna said emotionally she was five.

In another incident just the other day, Casey attacked her mother as they walked to school, leaving Donna with a broken 
finger.

“She didn’t want to go to school, 
she just started hitting out. She kicked me and then because I didn’t respond she got me in a headlock. I hurt my finger trying to get out of it.”

The family – including another son, Harry, 11 – live in a three-bedroom flat in Gracemount. They have a partition in the living room so the children can each have a bedroom of their own.

Donna said: “There was a time when I didn’t want anyone to know what was going on.”

But she decided to speak out to highlight the problems families living with autism can face.

“Unless you live with autism, you don’t understand how it can be,” she said. “My family won’t be the only one going through this. And there is not the proper support.

“I want to scream from the rooftops: ‘Help me, help me, help me’.”

Casey was in mainstream education until recently but now goes to a special school.

But Donna said otherwise the only regular help she gets is a one-hour session once a fortnight from children’s charity Barnardo’s.

“Although her behaviour has maxed out over the past six months, it has been an issue for a much longer time. I was able to manage and control it until just a year or so ago. She is too strong, too big. I need social services to help me raise her.”

Donna is a single mum and has no family members nearby to help. She said Casey had displayed aggressive behaviour since she was two and a half. She was referred to the child and adolescent mental health service when she was seven.

But it was only in July last year that she was officially diagnosed as autistic.

Donna said: “At first, social work and child and adolescent mental were telling me we were not doing enough interaction with her and not creating enough boundaries. That’s a big confidence blow to a parent, to be told you’re not doing your job properly.

“I did a family therapy course which gave me confidence back to say ‘I’m a damn good mother’.

“When she started high school I made them aware she was autistic but didn’t have the diagnosis. Because she didn’t have the diagnosis they couldn’t treat her as autistic, they treated her as a naughty child.

“The school were putting in place the things they put in place for a naughty child – a daily diary for behaviour, taking her out of classes and putting her with children who had been disrupting the class.

“She started picking up their behaviour and showed that at home – swearing, hitting, kicking, punching. She got worse through the other children.”

Donna said her education level had fallen dramatically. “She has not been learning since half way through first year.

“She has been so anxious she is in defensive mode so she’s not learning or listening.”

Now in specialist school she is coping better, but at home she is still aggressive and 
unpredictable.

“Although school is going well, her behaviour is never going to change.”

Donna believes the key would be a consistent person outside the family for Casey to relate to.

“She needs one worker who is going to be consistent and it has to be for the long term.

“What I was thinking of was a foster carer who could take her at a weekend or overnight so she has interaction with another adult.”

And she said she was prepared to put up with the attacks until she can get the right solution for Casey.

“I can’t be angry with her – she is my child and she needs help. We all need help or we could end up with someone being hurt. We keeping getting to the point I said I didn’t want to reach – all the things we don’t want to happen.

“Social services need to step in and provide respite for everyone, or else they could all be having a meeting asking ‘How could we have prevented 
this?’

“Someone in my family is going to get hurt really badly and it could be prevented. It doesn’t have to happen.”

A council spokeswoman said she couldn’t comment on individual cases, but added: “We regularly review our services to make sure they adapt to new demands and we will continue to do so to ensure every child with additional support needs is properly catered to”

ian.swanson@edinburghnews.com