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To Mourn, or Not To Mourn

When your child is diagnosed with autism, do you mourn?

Let me say something in defense of those who love the kid, hate the autism.

Mourn? Sure I mourn. While some look forward to future school Christmas concerts, ballet recitals, little league games; I lay awake in anxiety at bedtime, worrying that my child will be abused or molested in an institution after I'm dead. While some of us look forward to our teen's first date or prom; others will still be changing diapers or deciding on which group home looks less depressing. Is my child happy? I don't know because she has no words in between the hysterical laughing and the crying tantrums that go uncomforted and tear at my already withered heartstrings.

Do I mourn for the baby I used to have or thought I had? You bet I do. On those rare moments that my little girl will lie down and 'cuddle' with me, I see in her sweet face a ghost of the baby that I gave birth to; the perfect sweet, angelic baby that I had dreamed about and looked forward to for nine months. I remember the indescribable joy I had for such a short time, that was snatched away from me be to be replaced with agonizing despair. Two lives destroyed by autism. Do I hope for a cure? You bet I do, if too late for my baby, at least to prevent any other human beings from experiencing the horrible all-consuming emotional pain that I experience every day. A pain that no psychiatrist, therapist, priest, pill or bottle can ever take away. A pain that, for me, isn't even escapable in sleep, for I still dream of the precious little girl that I gave birth to and re- live in my nightmares the theft of my brief joy.

I'm truly happy for those success stories that I hear about, and admire people who are comfortable in their children's "uniqueness"; I strive and struggle to be like them. But my daughter isn't just "unique". She is severely autistic and mentally retarded, and I am reminded of that every day. I'm reminded when I hear little children in the mall excitedly discussing Santa or the Easter Bunny with their mom's; I'm reminded with every damn commercial where I see little children playing with toys; I'm reminded in the grocery story when I over-hear women answering all those silly-little-questions that children ask, and I envy them. Is it OK to mourn? Yes it is. Just as it is OK to be strong and 'accept' the autism. Either way, we should respect other parents' feelings towards autism, as we cannot all be the same. Do I love my child? Yes I do, with all my heart. But I still hate the autism and what it has done to us.

April Wells

February 1996