Yours is a decidedly painful situation. As a psychologist, I always caution people not to underestimate how hard any childs disability may be to accept and make peace with. It is good for you to admit how you really feel. It doesnt help to pretend to be positive when underneath you may be lonely, afraid, sad or mad. You dont have to lie to yourself. You can grieve. You can complain. You can mourn. This helps you to go on, make the best of the situation, and enjoy life. Our life force is resilient, but the longing for the healthy child or a typical existence may endure. You have to learn to live with that yearning, but you dont have to lie to yourself about how hard this can be. This is a giant step towards finding happiness in the everyday life you have with your family.
When my son was young (Tariq will be 27 late this November), I thought I would never be happy again, never laugh or smile wholeheartedly, unless he would begin talking again. Those were certainly thoughts born of the depression and grief following his diagnosis and lack of dramatic progress. He never did speak, and it took time and support and help to move on from this dark mood. Like many, many parents, I learned to celebrate what my son could do and relate to him as he was and is. I still wonder what his voice would sound like. Some days I still wonder what might have been. I still get upset when his behaviors are difficult to cope with. Beyond that, I can wholeheartedly enjoy a walk in the woods, a hike over a rocky trail, or a canoe ride. My relationship with him is different but not defective.
Accepting our pain and suffering leads to accepting and enjoying our child and our family life. Your child, while very different, even from other children with autism, is not damaged. Along with other children and adults on the autism spectrum, he bears witness to the diversity of the human condition and the resilience of our soul. That deep connection that a parent feels with a newborn, or a childs first steps, or first words can be felt at any moment when we are truly aware and attuned to our child with or without autism.
This ability to relate with joy and acceptance is what we can control. The autism and its many manifestations we can deal with as best we can and as best as good therapists and teachers can help us with. Especially fueled by your love, your child can progress in accordance with his capacities. But so much is beyond your control and the control of all parents of typical and special children. What remains in our control is how we deal with our feelings and how we deal with our relationships herein lies the possibilities for growth and happiness.
From Dr. Cindy Ariel:
You raise a very important distinction regarding when to back away from our involvement with our children and when to hang in there, providing the extra support he may need.
As your child has grown, Im sure there have been things you have been able to back away from. For example, as he first began to walk you had to be there every second, holding on so he wouldnt fall or get hurt. As he became more confident and proficient, you were able to let him go and watch from across the room. If you had a child who did not learn to walk on his own, of course you would still be at his side.
Similarly, your son needs you to be more engaged than you might otherwise be if he were more verbal. It takes more time and effort on your part and on the part of others to understand what your son wants and to communicate with him. Unfortunately, there are sometimes areas where a person reaches a plateau in their learning or ability and this can be very frustrating for all concerned. It is normal to feel sad and angry at times. Your son may never be able to accomplish the things you have hoped for him, and that fact may always hold sadness, frustration and anger.
While it will be helpful for your son for you to continue to work with him around his verbal and nonverbal communication, it is also important for you and your son to have times when you relate to each other without pushing it. Just enjoy doing some of the things that he may like, such as being pushed on a swing, sliding on a sliding board, listening to a story, or having a favorite snack. Life is tough and we all need to smile and laugh. His relationship with you and others around him will motivate him to ultimately do the best that he can in relating and communicating.
Robert Naseef, Ph.D., and Cindy Ariel, Ph.D., are the co-editors of "Voices from the Spectrum: Parents, Grandparents, Siblings, People With Autism, and Professionals Share Their Wisdom" (2006). On the web at http://www.alternativechoices.com .