‘My autistic son hurts me and himself in sleepless nights caused by frustration’

Kristian Jones, 12, has trouble sleeping and mum Gemma Jones sees her son change from a ‘happy and smiley’ boy to someone who will hurt them both at night

Gemma Jones, with her youngest child, Kristian Jones, who has autism

A boy with autism hurts his mum and himself during sleepless nights caused by frustration.

Kristian, a 12-year-old, has trouble sleeping and mum Gemma Jones sees her son change from a “happy and smiley” boy to someone who will hurt them both at night,

Those who have Autism Spectrum Disorder can have sleep issues.

It can lead to daytime tiredness, learning problems and behavior concerns such as aggression and hyperactivity,

The sleep issues affect other members of the family but also other family members and he repeatedly stays awake at night.

Gemma hopes to raise money for a specialist bed, which cannot be funded by the NHS, she hopes will provide a safe space for Kristian.

Kristian Jones, 12, has autism which has resulted in sleeping problems


Gemma Jones)

Mum Gemma Jones, with her youngest child, Kristian


Gemma Jones)

She told WalesOnline: “Kristian was diagnosed with autism when he was two years old.

“The only way he can go to sleep is if I lie next to him, otherwise he would be up and about in the house, causing damage or chaos.

“Sometimes, he has bad days where he doesn’t go to sleep before 5 o’clock in the morning and I’m left black and blue – he doesn’t realize he’s taking his frustration out.”

She added: “It can happen seven days a week sometimes. He goes to stay with his dad over the weekends purely so I can sleep more than two hours and I can spend time with the other kids.

“It can be particularly challenging when he doesn’t go to sleep until 5 or 6 o’clock in morning and I have to wake him at 8 to go to school – he’s shattered.

“The summer holiday is the hardest time because obviously you are with him day and night.

“Whereas when he’s not on holiday and he’s in school, if he doesn’t sleep at all at night, I know I can get a couple of hours sleep in the day.

“In the summer holiday, I don’t have that option – once he’s up, he’s up.

“It does get draining and I’m so tired. When you’re tired, you’re prone to things like colds and cold sores.

Kristian’s autism can lead to daytime tiredness, learning problems and behavior concerns


Gemma Jones)

People who have Autism Spectrum Disorder, such as Kristian, can have sleep issues


Gemma Jones)

“I’m constantly at the doctors getting cream because I come out a lot with cold sores when I’m tired or stressed.

“But also, you’re stressed for him – you can see his body wants to go to sleep but his body is still active. He’s frustrated and you understand why he’s frustrated and lashing out because he can’t switch off – it’s heartbreaking. “

As Kristian was recently diagnosed with epilepsy, lack of sleep can also cause more seizures. A specialist bed therefore would not only promote safe sleeping, but also a safe space for him during particularly difficult times.

Gemma said: “The specialist bed would include sensory objects and a camera. In that bed then, if Kristian is having a seizure, for example, I can see over the video.

“It’s not safe leaving him on his own in his room. So this bed would make it a safer environment for him – it’ll calm him down.

“I could be in the next room – I could go to bed, read a book or something, while he settles, feels safe and not anxious because he’s trying to go to sleep.

“It would be life changing for the family as well. The other two are older, it would be nice to be there for them as well, help them with school and other things.

“It would be nice to do whatever I have to do and know that he is also safe. It’ll be life changing for him and for us as a family.”

With the aid of her friends and family, Gemma hopes to fundraise for a £5,000 specialist bed for her son, with a walk up Pen-y-Fan set to take place at the beginning of June.

The mum-of-three said that the response to the fundraising so far has been “heartwarming”.

She said: “Many of my friends and family are raising money, and we have got a lot of people coming together as a community.

“A specialist bed is over £5,000 – hopefully we’ll have the money and the bed set up by the summer holiday because it’s crucial.

He’s a happy and smiley little boy, but obviously like anyone when he gets tired he gets grumpy. This will be life changing for him.

“When you have a child with disabilities, you feel like you are on your own, especially at 3 or 4 o’clock in the morning, you feel like you are alone there.

“Like most people, I don’t like asking for help and feel like I should be able to do this by myself.

“But the fact they are all coming together, without me even asking, it’s so heartwarming.

“I never thought anyone would go out of their way to do this. They have a lot going on themselves with Covid and their own families.

“I’d like to thank everybody for the kindness that they have shown.”

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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