Keep Finn Safe and Alive

Finn is a 10 year old boy who charms everyone he meets with his big laugh, extroverted and caring personality. Finn wakes up every day excited to be around his family, socialize with anyone and everyone, and explore the world. From a young age Finn has been extremely curious, sensory seeking, and social. Despite being mostly non-verbal, Finn has always been a social butterfly, longing for friendships and connections with those around him.

Each day Finn teaches us something in his own unique way. He is diagnosed with a rare genetic disorder called Mowat-Wilson Syndrome, Autism, Intellectual Disability and Epilepsy. Due to his disabilities he has been engaging in therapies ongoing since a very young age. Finn has a daily invasive medical procedure due to a chronic bowel condition which he will live with for the rest of his life.

Finn has suffered significant abuse at previous schools that was meant to support children like him, and has nearly died multiple times in the past 2 years due to severe tonic clinic seizures and a bowel haemorrhage. Despite these challenges, Finn is the most resilient and caring young man who is deeply loved by his family and devoted team of support workers and therapists.

Finn has a high pain tolerance and due to his cognitive disabilities, a poor understanding of risk and consequence. Finn often shows little to no fear and is exceptionally vulnerable in the community, particularly when he uses his resilience to try again and again, becoming fixated on unsafe actions like absconding.

Recently, Finn and his family went through a traumatic event when Finn successfully absconded from his home well before 4am. Finn has no concept of safety in the community including road safety and stranger danger, and was unaware of the danger he put himself in wandering across a main road and through the community alone in the middle of the night.

On this night, Finn’s mum woke to her missing son. Immediately calling SAPOL, she began searching for Finn alongside his uncle, the police, and multiple support workers. He was found by a member of the community who called the police after seeing him with a ‘strange and concerning looking older woman’. This woman left 10 year old Finn alone in the dark, unable to communicate, and clearly lost before the police arrived. We still don’t know what happened to Finn due to his inability to communicate fully.

Thankfully Finn was located and returned home unharmed after the approximate 2 hours he was alone in the community for, aside from injured feet from walking barefoot. We fear we will not be as lucky next time for someone as vulnerable as Finn. Finn is at risk of being in a car accident, drowning at a nearby beach, being taken as he cannot defend himself verbally, getting lost, wandering to wetlands, and injuring himself during his absconding.

Finn has been at risk of absconding since he could walk, and it could previously be managed by baby gates and locks which he didnt have the skill to use. Finn now has the skill to use keys, unlock doors and sneak quietly to abscond unnoticed. Since this incident, Finn has been repeatedly attempting to abscond the home with more intent than usual, always running toward the main road situated behind the family home.

For children with Autism, research indicates:

49% of children with autism attempt to elope at least once (Anderson et al., 2012).

35% of families report elopement occurs regularly, posing significant safety risks.

Children who elope are at a high risk of re-attempting, particularly in the absence of preventative measures (McIlwain & Fournier, 2012).

A study published in the Journal of Autism and Developmental Disorders found that 67% of children with ASD who had attempted to elope at night reattempted within 6 months (McDermott et al., 2017).

Another study published in the Journal of Child Psychology and Psychiatry found that 45% of children with ASD who had attempted to elope at night reattempted within 12 months (Hill et al., 2015).

A review of 17 studies on elopement in ASD found that the average reattempt rate was around 55% (Anderson et al., 2018).

Finn does not currently have NDIS funding for overnight support, leaving his mother/full time carer to diligently supervise him from the moment he wakes until support workers arrive the next day. Finn will often wake anytime after 11pm, and remain awake for the remainder of the night until morning support workers arrive.

We are desperately seeking house modification approval through the NDIS to put in place preventative measures to keep Finn safe during the night. However, this is likely to take months and be rejected with their recent legislation changes - we fear Finn absconding again may result in a catastrophic event - Finns safety is at imminent risk and we cannot wait.

Finns mother is a single mother of 3, full time carer for 2 of her children and her brother, all whom have their own unique needs and diagnoses. She dedicates every fibre of her being to providing her children with the highest quality life she can give them, tirelessly advocating for their complex needs and managing a large team of supports to have their needs met. Finn’s mum is currently fearing for his life, knowing the high risk situations Finn can put himself in due to his lack of awareness.

For Finn, none of this matters if he escapes in the night and doesn't return home safe. This is the frightening reality for Finn and his family.

If you could please donate anything at all to support this family in being able to afford house modifications designed to ensure Finns safety it would be indescribably appreciated.

We are seeking to install an alarm system for the front door and safety screens to prevent Finn climbing through windows along with perimeter fencing. The cost would also cover installation.

Thank you for taking the time to read and know our Finn, and a very small glimpse into the traumatic daily life of ups and downs caring for a child with rare and complex behavioural and medical needs.