SOCIALISATION has always been a difficult task for young Alex Lynde, who has endured more than any child should have to bear in his six short years.
Alex had open heart surgery at one-year-old, social and physiological challenges due to his autism, and a diagnosis at six months with neurofibromatosis (NF), a degenerative condition which causes benign tumours called neurofibromas to grow around his nerve cells.
However, just recently, Alex’s mother Shelly shed tears or happiness when she was told by his support worker that a little boy in his class had asked to play with him at school that day. By the end of lunchtime, a little girl had joined the two boys and the seeds of friendship were firmly sown.
“Socialisation is a bit of a challenge for Alex, but I’ve always found that the other children at school are beautiful towards him,” Shelly said. “The kids don’t judge, they just think ‘that’s just Alex and he has a support worker but who cares’.”
Shelly has the National Disability Insurance Scheme (NDIS) to thank for her son’s newfound confidence as Alex now has funding for support services that the Lynde family struggled to afford.
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Originally, group therapy was a disaster because Alex could not focus or sit still, so the only option left for his family was private therapy, according to Shelly.
This meant that Shelly was forced to go back to work to absorb the enormous cost, despite the challenges that this created with a child who regularly had to be kept home or picked up early due to frequent respiratory illnesses and therapy appointments. “He needed that one-on-one attention, but weekly speech therapy, occupational therapy and physiotherapy was like having a second mortgage,” Shelly said.
Now Alex has an NDIS support plan which includes weekly speech therapy, occupational therapy and a continence nurse to help with toileting at home and at school, which aims to keep him in a mainstream classroom.
“Before the NDIS, I found it frustrating that all the literature says early intervention is key to allow children with NF to integrate into mainstream society, but if I can’t pay for it, how am I supposed to do it?” Shelly said.
“NDIS has alleviated the financial pressures. To go from receiving nothing to Alex having all of his therapy costs paid for, it means so much to our family. I feel like doing cartwheels!”
Although it was early days, according to Shelly, the fact that all of Alex’s supports were working together had lifted the burden from the entire family, including big brother Jonathan, 12.
“There have been times I’ve been absolutely burnt out. Now I feel as if the weight has truly lifted off of my shoulders,” she said. “Without the NDIS, Alex would not have been able to start school this year.”