"I'm Stuck" says Oliver appropriately anytime he is kept from doing what he really wants to do, like leap out of the car and run up the stairs to Grandma's house. He says this to let me know that I should help him out of his seatbelt and quick! Or, he says, "I'm stuck in the muck" if he really wants to do something and is being restrained from ever doing it. Like jumping into the brackish, spoiled water of the creek that runs by a few blocks from our house. And I've got to hand it to Oliver. He has only a few words but they are well chosen. Even the sound of the word 'stuck' makes it seem an unfortunate place to be.
Over the last so many days since Autism, I often find myself wondering how much each of us has become stuck. I find that we are in a true liminal state both as a family and as individuals. We're not quite the family we were and we haven't yet found how all of these pieces will fit together to create the family that will see us through. And as individuals: mother, father, brother, we haven't yet learned how to fill those roles in this new context. For my own part in all of this I have had to stand up straight, look myself in the mirror and give my self a good talking to more than once. I am not the Reader's Digest mom who will overcome great adversity through some heroic sense of inner strength. I would like to be that mom but I'm just not. Shortly after Oliver's diagnosis I found myself struggling mightly with self-pity, frustration and anger. This is not the life I signed up for. But this is the life I was given and I was entrusted with Oliver for which I am profoundly thankful. And so I have come to understand that my job as a mother is to have love and faith and hope and humor. With those four things practiced daily I hope I will emerge from my state of becoming as the kind of mother that Oliver needs and deserves. The verdict is most definately still out.
If our life were a movie of the week, however, Oliver would most certainly be the hero. I can't imagine the daily struggles that he faces and yet he manages to spend a good part of each day smiling and, we believe, happy. Since Oliver's language is so limited it is hard to know many things about him. Parenting isn't an exact science even with typical children, but when your child is autistic and largely non-verbal you find yourself making a lot of guesses and assumptions. When Oliver was first diagnosed we comforted ourselves that at least he was physically very healthy and, we assumed, fairly happy. Upon hearing this from us, however, one of Oliver's therapists drew our attention to the writings of those who are able to describe how tormenting it is to be "trapped" within oneself by autism. This conversation has lingered in the back of my mind and each day I realize a little bit more that I don't really have a good understanding of how Oliver experiences the world or just how stuck he really feels. That realization has been hard. But I continue to believe that he is, overall, a fairly happy little boy and have hope that one day he will be able to tell us for himself.
I decided to start this blog as a way of recording and sharing Oliver's progress. The Baby's Book of Milestones that my mother gave me when I was expecting Oliver is sitting on a shelf gathering dust. I realized the other day that it had gotten shuffled to the back about the same time that Oliver stopped having milestones to record. I'm afraid to take the book out now to look at it and realize all of the things that Olver used to do and doesn't anymore. The change in him over the last year, and the loss of so many skills, has been tremendous. I think I will burn that book! Instead I will try to capture here the milestones of our family as we grow into what we will be and of our heroic little boy who it seems is stuck from time to time.