A mum of three has spoken about the challenges of caring for her 12-year-old son who struggles to go to sleep at night. 38-year-old Gemma Jones from Brynna in Rhondda Cynon Taf is a carer for her son, Kristian, who has autism. According to Gemma, although her son is a "happy and smiley" boy he has trouble sleeping at night, which can cause harm to her and himself.
Children who have Autism Spectrum Disorder can develop sleep problems, with insufficient sleep often resulting in daytime tiredness, learning problems and behavioural issues such as inattentiveness, hyperactivity and aggression. Not only does sleeping difficulties impact the child, but also other family members.
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According to Gemma, Kristian's difficulty in falling asleep at night combined with repeated awakening has been an issue since he was born. With the help of her family, Gemma hopes to fundraise for a specialist bed - which cannot be funded by the NHS, and offer a safe space for Kristian.
"Kristian was diagnosed with autism when he was two years old," she said. "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 realise 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. 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."
