These words form the well known motto of Survivor, the reality TV game where contestants are stranded in a tropical location and forced to rely on their wits, strength and endurance to survive.
In the game, contestants need to be smarter, more strategic and stronger than their tribe mates. They need to use all their skills in order to ouwit, outplay and outlast their competitors.
Reacquainting myself with the show again, I believe these skills are equally important for special needs parents too.
I really believe that special needs parenting is a lot like Survivor.
Think about it.
Parents need to outwit their children. They need to anticipate every possible scenario so they can guide their kids to where they want them to go. I remember expeditions to shopping centres where I pre-planned where I was going to park and the route through the centre I was going to take in order to get to my destination safely without having to spend 20 minutes at the black and white ATM (my son’s favourite).
I gave myself extra points for avoiding sensory meltdowns along the way.
Special needs parents need to outwit their kids when it comes to:
- food (I can’t be the only one who has switched brands but still kept the original brand packaging for their benefit)
- attending medical appointments (I need to have a good bribe up my sleeve to make a trip to the specialist a success)
- going to school (school refusal is a unique test of my skills of negotiation, persuasion and persistence)
- trying new things (ditto to the above plus a liberal dose of bribery)
- getting organised (this is one area I still struggle in but routine and reward charts can help)
These are all every day examples of using experience, knowledge and cunning as a special needs parent to outwit your child in order to survive.
Parents need to outplay the system in order to get the help and support they need. They need to network and build alliances with everyone around them and know when to call bluffs or pull triggers. They need to decide which fire to put out first to avoid the most long-term damage while considering which fire to light in order to get the action and attention required.
Special needs parents need to become masters of playing the game to have any chance of coming out on top. They need to know who to talk to, who to escalate concerns to and who they can trust to achieve the best outcome for their child. They need to be able to play multiple games at once, across the education, government, medical and community sectors, resulting in multiple alliances and multiple threats.
In between dealing with the school and IEPs, dealing with funding and the NDIS, dealing with specialists and therapists and dealing with going about in the general community, I know I’m exhausted at the end of each and every day. But I know I need to keep on top of it all in order to continue to outplay the system and give my children the help and support they need.
Parents need to develop physical, emotional and mental endurance to keep in the game. There is no point being able to outwit and outplay others if you cannot outlast them as well. Special needs parents need to be resilient and persistent – they cannot take no for an answer if that means their child is disadvantaged. They will fight for their child and continue to push their case, even in the face of resistance.
Special needs parents need to cultivate patience, resilience and a distinct sense of humour to outlast everything they face. They need to be able to find the positives in any situation and will often develop a dark sense of humour as a result.
For instance, my husband and I will sometimes see the humour in our son’s vision impairment, particularly if it means he remains oblivious to sensory triggers nearby like balloons. The irony of one diagnosis “helping” out with another does amuse us at times – I guess you would need to be there to fully appreciate that!
Special needs parents need to be able to outlast the needs of their kids, the demands of their families, the strain of school, the pull of specialists, the expectations of therapists and the ignorance of the general population. It’s a tough gig and I know I struggle to keep it all together in order to keep playing the gane.
Do you agree that special needs parenting is a lot like Survivor? Share your examples of outwitting, outplaying and outlasting the “competition”!