Is Acceptance a Lack of Hope? And Vise Versa?

I recently read this lovely post at the following blog, which looks at notions of hope. http://roundworldflatmap.blogspot.com/2011/10/day-6-should-you-postpone-your-own.html#comment-form  I find the idea of hope a particularly interesting one for parents raising children on the Autism spectrum. Uniquely so as the developmental course of any one Autistic child is impossible to predict. This leaves a lot of room for parental projection based on hoped for outcomes. I think there's great value for parents in contemplating and being honest with themselves about what long term hopes they hold for their Autistic children.  I suspect for many of us it's a crucial aspect in understanding how and why we as parents respond to the journey our kids are on. Not making sense? Let me elucidate.

In the year since my sons diagnosis of an ASD Iv'e never considered the possibility of recovery. In fact I wasn't convinced it was even a reality. I suspected that any person who became indistinguishable either did not have Autism to commence with or had learnt to hide their neurological differences, yet would still be Autistic. Regardless it seemed such a remote possibility I paid no mind to the concept. This means I try to carry no expectations beyond the idea there will be progress for Harri, both as a natural part of ageing and learning and as a consequence of therapy. What that progress will look like is unknown but there are good reasons for optimism as we have an early diagnosis coupled with a fast learner and smart kid in him. I feel that as long as I can find acceptance of where he was and wherever he ends up, that is in the best interest of my own state of mind and Harri also. I think if I set high hopes, they might drive me to have unrealistic expectations, which may lead to disappointment, which would ultimately be unfair to him.

Then during a meeting a month ago with the program co ordinator at Harri's therapy centre, she used the recovery word. I can't recall the exact sentence, but it was something like "when a child is in recovery...", said as we were looking at Harri's monthly data sheets which track his progress. Now some parents at this point might have pounced on the word. Asked the therapist to clarify what she meant. Was she suggesting we might be witnessing a trajectory that indicates potential for recovery from Autism? But I didn't. I froze. I tried to block the word from my mind and focus on the remaining conversation. I don't want to hope for recovery. I find the idea anxiety inducing and fraught with problems, as explained above. How could I not feel disappointment if I pinned my hopes on that concept only for it not to eventuate? And how unfair is it to have that expectation placed on my child? Yet I am aware there are others who actively pursue 'recovery' as if it were the only acceptable outcome.

I know there are parents who would give a limb to be in my position regarding Harri's progress to date. I'm really aware of that. And for that reason I considered not mentioning this topic of recovery at all, as it does seem insensitive towards readers who face an inevitable, lifelong commitment of caring for their child/ren. And their hopes for progress are based on outcomes I now take for granted, such as verbal communication. But I wanted to use this idea of recovery as an opportunity to kick start a post about hope and expectations, and how they can impact in not so positive ways. I understand this topic is more multi layered than I will do justice to here. But I believe there is value for all parents of children with Autism in asking themselves what hopes they hold to, and how that may affect the ways in which they relate to their child. Iv'e personally found it to be a valuable exercise.

I share the story below of how hope led to wrong decisions according to this father.

http://www.autism-watch.org/about/bio2.shtml

So how can we, as parents,  hold expectations of development for our children that are realistic and don't lead us down paths that prove to be ultimately futile and heartbreaking. And in many cases harmful for the child. How do we not set ourselves up for disappointment unless we take a pessimistic point of view in order to be pleasantly surprised? I suspect essentially it requires a zen like acceptance of 'now'. Which is incredibly difficult when it comes to our children. Not looking too far forward, but going with our kids, assisting them and adjusting supports and services when necessary to ensure best outcomes. Whatever those might be.

Personally 'normal' or indistinguishable is not a goal I hold for Harri, as I have written on this blog previously. I refuse to entertain that idea, no matter what his therapists might think or say. They can afford to speculate and set their expectations as high as they like. Right now I am cautious due to his young age to project too far ahead of what I see in front of me today. And based on that alone I am proud of my remarkable little boy. If I was fixed on the future and hopeful outcomes beyond today I would risk missing the wonder and pride I have at really seeing who he is right now.

That's not the same thing as accepting behaviours that are limiting. It's not about taking a ce la vie attitude. I work everyday to ensure Harri learns as much as he can. I'm not talking about hope for improvement, as that's a given. What I refer to is the long term picture many of us hold as to what might be the best results for our children, such as attending mainstream school, living independently, holding down employment and so forth. Hoping for these things may seem natural, yet they also yield insight for consideration. Such as, for who really, is that projected hope the best outcome?