13 Jun Autism will not define little JJ
When her son JJ was diagnosed with autism, Daniella Patey’s life was turned upside down.
Watching her little boy have terrifying meltdowns, hurt himself and scream uncontrollably was something she could never have been prepared for.
The three-year-old will not even let his heartbroken mum comfort him with a cuddle and she is left hoping that the sound of her voice will be enough to soothe him.
Daniella’s everyday experiences will ring familiar with other mums who have autistic children but they came as a massive shock to the 28-year-old who also has daughter Lucy, seven.
JJ, who also suffers with global developmental delay, was only diagnosed in November last year but their difficult journey began when he was just seven months old and began suffering infantile spasms.
Determined Danielle fought for a diagnosis for her son despite being turned away and sent home by doctors calling her a “over-reacting mother”.
She said: “I begged them to let me sit there and wait for him to have a spasm but I was just sent home. So I recorded him the next time it happened and we were referred to the RVI. He had a diagnosis in 45 minutes.”
Daniella was warned infantile spasms are very closely linked with autism so she began preparing for a hard life she never dreamed of.
“It was terrifying going from having a little girl who loves nothing more than a kiss and a cuddle to a little boy going berserk and hurting himself,” she added.
“I was afraid that I was going to let him down and not be able to take care of him.”
But Daniella was reminded by a special education worker that autism was just a label and JJ was still her little boy and she gradually began to gain confidence.
JJ can have meltdowns due to his autism which cause him to bang his head on things, slap himself in the face, bite himself and “scream like he’s being murdered”.
Daniella said: “It’s really traumatising as a parent. I’ve never felt so helpless. He won’t let me give him a cuddle to soothe him, I just have to sit on the outside and try and soothe him with the sound of my voice.
“It used to really upset Lucy too when he had a meltdown but she’s used to it now.”
Like many others with autism, JJ loves his routine and doesn’t like it to be changed so school holidays can be a trying time for the family and he can’t be calmed down no matter how hard they try.
Daniella would love an outdoor playset for JJ, who goes to nursery at Gibside School, to use in the garden at their Gateshead home but it comes at the hefty price of almost £700.
“It would be really beneficial to his development but I just can’t afford it,” the single mum added.
The climbing frame would help to improve JJ’s hand-eye coordination and balance which he struggles with and would be a safe place for him to enjoy himself.
Daniella said: “He has no safety awareness so he wouldn’t think twice about running in front of a car. When he falls over he doesn’t put his hands out to stop himself.
“He also doesn’t register pain which is the scariest thing of all. It’s a constant worry.”
JJ has been picked as one of ten children to benefit from the donations received by The Sunshine Fund’s Go Bananas appeal this June.
The charity raises money to buy specialist equipment for North East children in need and your donations would mean the world to this family.
“It means he can have his friends over to play and he can play safely,” Daniella added. “He can enjoy himself like any other little boy.
“I wouldn’t be worried sick and I’d be able to enjoy myself with him instead of being uptight and panicking all the time that he’s going to hurt himself or someone else.
“It would mean a lot to us.”