Article first published as Bearing Up the Yoke of Autism on Technorati.
I just read a very telling post by a very human mother of a child with autism. She described a situation where immediate changes of plans was necessary, but yet they had to deal with the elephant in the room: her child's autism. She describes her momentary frustration she has with her child's condition, and the limitation it places on her to be able to do what she feels needs to be done (for more information on the situation, please read her post).
Her description of autism as a yoke, something that holds her, her family, and her child back, is a very telling metaphor. Families who have children on the autism spectrum find that all their plans for their family, the visits to crowded locations like airports, amusement parks, museums, concerts, etc., are all limited by the sensory needs of their child.
With our family, we had frustration after frustration as we fought to find a way to keep our sons occupied during the summer months without having them go outside in 100+ degree weather. We found more time was needed to devote to our children's education in order to help him move to the level of his peers, only to have his slow speech disappear during the summer. Often times dealing with autism, and not the child, seems to become an exercise in futility.
Now, I don't want to sound like I'm complaining about my sons. I'm not. I love them both deeply, and love the lessons they have taught me in patience and unconditional love. They are both my children, and have such wonderful personalities that I can't imagine having any other children. They are generally very happy, constantly enjoying even the most simple activities. They are both so willing to help. It's just that barrier of communication that autism brings to our relationship that makes it frustrating.
All parents are human, even parents who have children with autism. We work hard to make sure that autism doesn't interfere with everyone else's lives, at the expense of what is perceived as "normalcy" for our own. And at times, we can feel at a loss to see the positive side of such attention. But then your child looks you in the eyes, smiles big, and says a word (or even two!), and your world comes up roses.
So, just like the oxen who work together to plow a field full of live-giving grain, parents of a child with autism can accomplish great things by pulling. But don't look down on any of us if, at times, we chafe just a little bit.