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One Autism Mom's Ghosts of Christmases Past, Present, and Future

Posted Dec 23 2011 12:00am
Christmas Past

Our autism journey began in earnest on Christmas Eve 7 years ago. We had taken the Prince to an audiologist for testing, since at 18 months old he was not speaking except for three sounds which only the Professor and I understood to be communication: “ma” for me, “ba” for bottle, and “ca” for food. Our pediatrician did not think anything was wrong and gave us the referral, hoping, I think, that everything would be fine and our new parent anxieties would be calmed. “Don’t worry, boys talk later,” she said. The audiologist confirmed that the Prince’s hearing was fine, but she said he had several “red flags” for autism. In my heart, I already knew that, but this was the first professional to say the words out loud. She said that she was not qualified to make a diagnosis, but that in her job, she had seen enough children to know the potential signs. She said this, as the Prince, in a state of anxiety due to the doctor’s office setting, was intent on flipping his stroller over so that he could spin the wheels.

A few weeks later, the Prince was enduring a battery of developmental tests at our local Early Steps (birth to three center). It was a long day for all of us ending in the confirmation of the painful reality that except for his gross motor skills, where he was on target and even a little ahead for his age, in every other area he was severely delayed. At 20 months, he tested at a 6 to 7 month level. We were told he was “at risk” for autism and that he qualified for services in speech, OT, and behavioral therapy, but again, that they could not give us a diagnosis. For that we should see a neurologist.

At the depths of my despair, my first Christmas spirit guide appeared. As luck would have it, my business partner was friends with Dr. Ricki Robinson, a well-known developmental pediatrician in California with a specialty in autism. Also, her son has autism. My friend gave me her cell phone number. I called and left a rambling message on her voice mail. A few minutes later, she called me back. I will never forget her kindness. She was on vacation, and recognizing the fear all parents facing this diagnosis feel, as a fellow autism parent, she took the time to call me back. Dr. Robinson gave me two hours of her time, for free. She gave me invaluable information about the best resources in South Florida and sent us to The Dan Marino Center. But most importantly, she related to me as a mother and she cared. Dr. Robinson was my first guide into the world of autism parenting and I will always be indebted to her for taking the time to call me and offer help and reassurance.

The neurologist she sent us to, Dr. Carlos Gadia, formally diagnosed the Prince on the spectrum. It was devastating to hear those words, but we were expecting it by that time. However, Dr. Gadia gave us hope, he told us to “get busy” with the therapies and that by starting early, the Prince could certainly make gains. He is still the Prince’s doctor today and has given us advice on everything from autism-friendly pediatric dentists to education advocates.

Christmas Present

The Prince responded to the therapies. We tried the conventional and the unconventional and to our great joy, he now speaks very well and is in a supported fourth grade inclusion class and working on grade level, with the help of gifted teachers. He has a few friends, I wish he had more, but I tell myself, all you really need in life is one good friend, right? The Prince still has sensory challenges, though he has learned to tolerate them and not act out. Loud noises, ambient sound, being touched, these still make him uncomfortable. He does still stim at times, with an occasional hand flap and lots of jumping. Our mini-trampoline gets a good work out. But he is a wonderful child who does all the things little boys do: play with toy trains, ride his razor, and laugh at Pixar movies. He also has the gift of a terrific memory, a love of computers and space, enjoys drawing, building things, skiing, swimming, and his Dad is his best friend. Soon we will be adding Annie, an autism service dog to our home, whom we hope will give him self-confidence and comfort.

My spirit guides now are my autism mom friends. I have two really good friends with children the same age as the Prince. They are all on different places of the spectrum, but I feel like we and our children have all grown up together. We shared in the humiliation of private pre-k where we learned just how different our children were. We endured the unique experience potty-training is for children with autism. We have been through the IEP wars together. We are warrior moms and have even given each other super hero nick names (I am the Bionic Woman!) We are sisters through and through. I am also blessed to be part of a wonderful parent support group, Hope For Autism. At our monthly support meeting, we share everything. I have learned from the parents whose children are older than the Prince, and I like to think that the parents of newly diagnosed children have learned from me.

Christmas Future

Like the ghost of Christmases to come in the Dickens tale, the future is the scariest for me. Obsessive Compulsive Thinking (a variety of OCD) has emerged as the greatest challenge for the Prince, interfering with his ability to concentrate at school or even for basic adaptive tasks. The Prince has a beautiful, rich and full fantasy life. If left to his own devices, he would rather enjoy the visions in his mind than take part in our world. Sometimes, I think, who can blame him.

The Prince is attracted to the work of Vincent Van Gough. At my most neurotic moments, I think of Don McLean’s song Vincent: “Starry starry night, flaming flowers that brightly blaze, swirling clouds in violet haze…are soothed by the artist’s loving hand….this world was never meant for one as beautiful as you.” And I worry that our world is too much for my sensitive boy.

So, though we had hoped to avoid it, the Prince must now take medication and has weekly psychiatric therapy. His psychiatrist has been saying of late that we must begin thinking about the future and push the Prince even harder to resist the OCD urges. If not, he may be unable to succeed at college or trade school, or to live life as an independent adult. Of course these tap into my greatest fears, combined with my own fear of cancer recurrence and not being here to usher my child into his adult years. Eric’s psychiatrist is my spirit guide for the future, though like Scrooge, I am not sure if he is heralding things that will be, or things that might be.

Will the Prince ever find a girl who can delight in his little quirks the way I do? Will I be around to see it? Will he ever get married or have children? I save little treasures that I might want to pass along to future grandchildren. But even as I do so, I wonder if it is just wishful thinking.

But I try not to focus on my fears. Having cancer has taught me to focus on the present and enjoy each day to its utmost. The Prince has made so much progress since that first Christmas Eve so long ago. I never thought he would speak, and now he does. I never thought he would let me kiss him, and now he can accept my expression of love. He surprises me every day. I love him so much. My goal for the new year is to live every day to its fullest, one day at a time. I thank the universe for bringing my Prince to me and the Professor, and for giving me the ability to love intensely and to nurture my little boy.

God Bless Us, Every One.

Photo Credit: The Starry Night, by Vincent Van Gogh
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