Posted on September 2, 2018 at 18:00 PM
Are you the parent of a child who is living with autism or any other disability? Do you find yourself on the edge? Are you finding it difficult to cope or understand why many in your community do not understand the struggles you and your child are facing?
Are you tired, frustrated, and mad at being looked at as alien, especially when you are out and about in the community with your child? Are you afraid to walk down to your local shop, supermarket, or playground with your child because you feel uncomfortable with the way you are looked at? Do the looks and expressions on the faces of people you encounter when you are in public spaces make you and your child feel unwelcome?
If any of these applies to you, your friend, or relations then I have a word for you. STOP Living on the Edge. Fasten your belt, sit tight, accept, embrace, and enjoy the ride.
Why should you fasten your belt and sit tight? Our experience of parenting a child who has autism and other disabilities for the past 12 years, informed by the experiences of other parents in similar situations, backed by research teach us that we are in a for a long haul. A long haul because Autism Spectrum Disorders are not something that will go away after a few years, they will be there forever. The only hope is that persons living with autism can in some cases learn and acquire skills which will help them to improve in areas of social interaction, communication, and behaviour.
The need to accept and embrace our reality: As parents of a child with autism and multiple disabilities, my wife and I have realised, again through experience, and interaction with other parents of children with the same conditions that.
(a) In most cases, we the parents struggle because we do not accept our realities.
(b) We are in denial, not ready and willing to accept that our children experience the world differently from others. This explains why we would sometimes say, ‘why can’t you behave like ‘Charlie, or Abigail?’ In fact, some parents find it hard to accept that their children exhibit unusual behaviours in public. For example, our son might get very vocal (making loud noises) when he wants something. Apart from being vocal, he can sometimes grab a stranger, hoping that they can solicit on his behalf. It happens, often when we are out in public and he wants something to which we say no and stand firm. This can be embarrassing, especially when the person he has turned to for help does not understand and gets annoyed or even accuse him of being aggressive, as we have experienced on several occasion.
Why you should embrace your situation: We live in a society where many people do not understand what to live with autism and disability really entails. Let alone the impact on the person experiencing the situation, their family, friends, and relations who care for them. A world in which most people are individualistic, caring only about their personal issues, for example, their next pay cheque, bills etc. This explains why when our son, for instance, touches a stranger in public he is seen to have violated their personal space. Even though the touch in his worldview could be an attempt to reach out to say hello or to ask for help.
Enjoying the Ride. My assumption, which by the way may or may not be right is that by now, this is at least making some sense to you, even just for the moment? My experience, as a parent in a similar situation, is that once we recognise, accept and embrace our realities, for example, the fact that our child, friend or relation is going to live with autism and disability for the rest of their life. That they will often or occasionally exhibit behaviour that are different, from what society sees as normal. That some people within our society will not understand or refuse to understand the challenges people living with autism and disability encounter on a daily bases, then we can begin to feel free, in the knowledge that this is the status quo. At which point, we will be courageous to take our children out and about, freely, and without guilt. Knowing that people will look at us in a multitude of ways; some scornfully, others with curiosity, wanting to understand why our children are behaving the way they are.
That this is just the way we must live, that our today and tomorrow may or may not be vastly different. When we understand and accept this, we are ready to apologise on behalf people living with autism and disability when they grab a total stranger in trying to call out for help, but also prepared to challenge and educate those who do not understand the issues. Helping them to realise that the realities of people and families of children living with autism and disability are different. That apart from being seen as nuisances and troublemakers, they are human beings in need of understanding and support.
It is my hope that we can together show love, understanding and acceptance to children and families of people living with autism and disability.
CAN-Abilities is a non-profit organisation. We support people living with autistic spectrum conditions and other learning disabilities and their families through everyday challenges. As a not for profit organisation we rely on donations from people like you.