Over the last few months, an autism video has gone viral in my Facebook news feed. The video is from the ABC show 20/20 and features a young girl with autism named Carly Fleischmann. Although it is almost three years old, it is being picked up again by my friends and shared all over Facebook.
I’ve seen this video many times over the last couple of years and each time, it brought joyful tears into my eyes. It isn’t hard to fall in love with Carly. She is a beautiful, smart young lady and her life story is an inspiration to many, autistic or not.
For some reason, however, the messages I have received and have come with its sharing are not always innocuous and welcome. Most often, it comes with messages of expectations of a cure, often along the lines of “this could happen to Alphonse too.” Sometimes, there are questions on whether we’ve tried what worked for Carly, with subtle suggestions that maybe we “just didn’t do it right.” Pray tell, what exactly is the right way?
I wish it were that easy, friends. Really. I wish we could say that technology, for example, the iPad, is our gamechanger and that we lived happily ever after. Unfortunately, despite the introduction of technology into our lives, none of Carly’s feats and achievements have manifested themselves in our experiences. Maybe it just hasn’t happened yet, or maybe it never will. Sure, we are disappointed, but we don’t blame anyone. It’s just the way it is.
Perhaps we should stop calling Carly a miracle. By its very definition, a miracle is “an event not ascribable to human power or the laws of nature and consequently attributed to a supernatural, especially divine, agency.”* When we refer to Carly’s life as a miracle, we forget all her hard work and belittle the blood, sweat, and tears her parents and teachers have poured in to make all these happen. At the same time, it sends a message that we celebrate only those who have found a way out of the shackles of disability.
I think that as Alphonse’s family, we have reached a point in our lives where we have stopped waiting for a miracle and have simply learned to appreciate what we have today. We lived through years of autism hell and back and knowing how deep and frightening the dark hole we have climbed out of is, having Alphonse restored to our family is a gift in itself. That he wakes up happy and content most days is a blessing for us. That the good days outnumber the bad is already a prayer answered.
Be that as it may, appreciation and acceptance do not necessarily mean giving up on helping him. All these mean little if we halt our efforts to help him reach the fullness of his being. Our dreams for Alphonse are the same as our dreams for our other son, his brother Alex.
To be happy.
To know that he is loved always.
To live a life of dignity in accordance to His Will.
What life with autism has taught us is to accept Alphonse as he is- imperfections and all- and show him that no matter what, he will always be accepted, nurtured, and loved.
I love Carly, and I thank God for all that He has done in her life. Carly is proof that we should never presume that intelligence is absent in the more affected individuals in the spectrum. It is a message that strikes a chord in my heart and I advocate the same for my son. But Alphonse, for all his limitations and disabilities, has had his share of wondrous things in life too.
When I think about it, I realize then that THIS the real miracle of Carly’s and Alphonse’s lives- the miracle of unconditional love.