Our beautiful and incredibly smart daughter, Jillian, was at risk at birth for many potential issues . . . including death.  Fortunately, she is not in a wheelchair, not blind, not having seizures, not spastic, retarded or a vegetable.  However, she does exhibit profoundly autistic behavior. 

She is non-communicative when it comes to words (signed or spoken) or pointing; however, she is usually able to tell those that know her how she is feeling.  Whether it is crying and biting, or jumping and flapping with her mouth open belly-laughing, or quietly pulling her shirt up for a belly or back scratch, or climbing in our laps for a rock or two (or fift)y, a smiling cuddle, or giving the excited recipient of the tremendous honor of a genuine baby-like "tongue" kiss, we can communicate with her. 

Of course, a life without autism would be fabulous; but no one chooses to have it.  What is our choice is how to live with it.

We have had the remarkable fortune to be educated and middle class; further, we have a family and caregivers who love our children, both of them, as much as we do.  Our therapists have loved our child.  Our educators have loved our child.  We have all racked our brains and worked hard to try to find ways to help bring Jillian into our world, and unlock hers. 

We have had successes and failures, and sometimes what has worked in the past has stopped working.  We have never given up, but in the face of each step back, or dead end on a course, have continued to fight.  We are winning--just maybe slower than any of us would like, and maybe not in the ways that we expected.

When a baby is born, he or she follows a general developmental course that eventually results in an exchange--physical affection for physical affection and, eventually, words for words.  If we never get that exchange, the reward of human interaction, we start to feel like we are banging our heads against a wall (doing something that is useless, because it does not provide us the desired reward). 

I think what I have realized is that the struggle is not to love your childthat is easyor to fight for your child's development; instead, for me, it is making myself remember to ask questions or make statements, every day, like "how was your day?" or "I love you", even though I don't get the type of response that as a human being I expect or need--what I call, being willing to keep banging your head against the wall.  All of the people in Jillian's life bang their heads against the wall, and are willing to do it tomorrow . . . and the day after that . . . and forever, if needed. 

The parents and people we need to reach out to are those without the education, determination and/or resources to know "how to bang their heads against the wall." 

I hope that both of my children look back on the job I have done as a mother and know that I have done the best that I can; of course, I wouldn't be offended if they thought I was perfect.  As with most questions, time will tell how successful I have been in dealing with autism (whether defeating itwhich is my dreamor finding a way to handle its challenges with love and grace) and, in spite of autism, how well I have raised my children.  I am hopeful.