Last year I remember reading a couple of blog posts about parenting children with Autism and there was a bit of debate going within that community about loving and caring for your child with Autism. The main point of the author was that to TRUELY love your child with Autism then you had to love the disorder. I remember at the time I was just a bit overwhelmed in working through the diagnosis and starting up the ABA program that I really didn’t feel like I had my feet on the ground. All I knew was that I loved LittleMan soo much … and then if I needed to love Autism … then I loved Autism. I could not spend too much time pondering such a notion as it got more nowhere and I have to deal with careplans, recruiting and training new therapists, organising shifts, battling government organisations, dealing with our cat dying of cancer (and then the death of my father) …. and of course looking after LittleMiss who was very much a baby at the time. The first 6 months of 2010 … well lets just say not good.
But now I guess I have a bit more headspace and it has been something that has returned to my consciousness. And it is something that has been mulling around in my brain? Do I love Autism? Do I need to love Autism as a parent of a child with Autism in order to fully love my son and all that he is? It is a question that I just can’t stop thinking about …
- I love my LittleMan soooo much. I have loved him from the moment that I knew he existed and that has only grown. I love him more and more each day … and this has not changed since he was diagnosed with Autism. For me loving him is the easy part.
- I love how my LittleMan is such a beautiful happy little person. He almost always has a smile and a hug. He is genuinely one of the happiest people I have ever known.
- I love all of the beautiful little people with Autism I know that have such wonderful hearts and who struggle every day to be part of this world in spite of their difficulties.
- I love all of the little people with Autism I know who whether it is because of their autism or in spite of their autism are capable of showing such warmth and affection. Maybe it is because it is so difficult for many of them to express when when you do see it … it has so much more meaning, honesty and purity.
- I love all of the little people with Autism I know who get up every day having to deal with sensory issues, the dirty looks (often bullying), the physical, emotional, social challenges just to go to school.
- I love the parents whose lives are drastically changed by being thrust into the world of autism and away from everything that they had anticipated. I love their tenacity, their sense of purpose to do whatever it takes to help their children.
- I love the siblings and friends of children with Autism. I love their ability to look beyond the labels and see the beautiful little person. I love their understanding and maturity beyond their years.
- I love the teachers and teachers aides that work within the funding restraints and do their very best to provide help and an education for children with Autism.
- I love the therapists who have dedicated their careers to improving the lives of people with autism.
- I love the people at Autism Awareness like Nicole Rogerson and Elizabeth Sarian who work tirelessly to increase awareness, advocacy for better services and funding and educational programs to both families, educators, medical professionals, other children/students and the general public.
- I love listening to people like Temple Grandin speak. I could listen to her speak all day. I love how she is changing how the world sees people with autism and the value of neurodiversity
- I love listening to people like Bobby Newman speak.
- I do not love the fact that my LittleMan has to spend over 25 hours week locked in rooms with adults instead of being with his peers … playing games and having fun.
- I do not love the difficulties LittleMan experiences with expressive and receptive communication (verbal communication). I really do think that his difficulties in this area … limit our ability to understand what he can do in so many others.
- I do not love that I sometimes feel helpless in regards to helping him overcome his difficulties … like I just don’t know how to give him a different way of either expressing his feelings or regulating his sensory “space” instead of biting his hand.
- I do not love the lack of understanding and lack of acceptance in the community for both Autism and other Mental Health concerns
- I do not love the negative looks and comments behind my back.
- I do not love the lack of funding for early intervention
- I do not love the lack of funding for schooling
- I do not love the lack of school places with appropriate staffing and resources (even when you have the ability to play $20K to $40K a year school fees)
- I do not love the pressure that privately funding Autism therapy and schooling places on families
- I do not love many families have to empty their super funds in order to privately fund therapy and private schooling
- I do not love the fact that some families fall part with all of the strain.
Okay. So is it possible to feel both anger at autism and love at the same time? To hold these seemingly opposing views side by side? I think so.
What do you think? As a parent of a child with Autism … do I need to love Autism? Is loving Autism a requirement to acceptance of a Autism diagnosis?
Images: Created using the Silent Angels – Autism Charity Kit by HGD By Laurie Ann. All proceeds from this kit until April 2012 are going to Autism Speaks.