The story of IVAN, a 16 years old boy with autism. Ivan does not speak but he can express through his eyes all that words he can’t say.
Today closing the blue autism month of April, I remember that day when a paediatrician told me, without looking me in the eyes, “your son has autism, he will never talk, he won’t be able to do this and that”. Those were too many “no’s” for a small child who had just turned 2 years old. In the middle of that shock life was giving us, somehow, I had a rare moment of lucidity and could say, “He has all life ahead of him, I will not allow anyone to put a ceiling on my 2-year-old son. When I asked him if there was a plan for Ivan, he just stared at me. There was no plan. No one can give a diagnosis such as this without the dignity and ethics of being able to tell what are the next steps.
Ivan is now 16 years old. He has intellectual disability, he doesn’t speak, and he communicates through an Ipad where he has all his universe of words in images. Ivan has the gift of speaking through his eyes all those things he can’t put into words. He is very affectionate and likes to be hugged strongly. He loves arrranging things in tupper wares and his face lights up whenever he finds out there is oven roasted chicken with tomato salad for dinner.
So many challenges, so many difficulties, but we never gave up. We heard so many times “Ivan can’t do such and such a thing” that I decided to ignore these claims and surround him with optimistic people. Those who know how to look at the possible but invisible at first, people who believe that being creative and with effort, aims can be achieved. Nothing in life is written. There is no rush to get anywhere. We might go slower, at our peace, will take other ways, even for those that are not yet drawn, but we will always go forward.
When I think of all that Ivan has achieved in these 16 years, I am so moved. We have walked and moved immensely. Miles and miles. I always think that autism is a long-breath marathon. You need to go slowly.
Today I can say that Ivan is a great companion. He has the gift of being always in a good mood, with a smile, with those big eyes that observe everything. And he is that perfect assistant who doesn’t miss out on any detail, not even on those I would like him to miss. He sets the table, takes out the trash, helps with the groceries, washes up the dishes, dresses, and bathes alone, accommodates his bag and is an expert bottle cap keeper. He is learning to stamp t-shirts that gives us the hope, that with the supports he needs, will be able to have an occupation in his adult life, maybe not eight hours like most of us have, but a job indeed, and means dignity. Everyday he understands more and more. Much more than we can imagine or he can put into words. He loves to ride a bike, run in the park, drive in the car listening to the radio, and having two toasts with butther and a glass of water at tea time. And he is the happiest person on earth when he gets into water, since he was a small baby he’s had a special passion for swimming, he is like a fish in the sea.
Every day Ivan is a hero, my great hero, because he silently faces so many challenges that we can only imagine. Even if we think that we live autism, he’s the one carrying it inside and only knows what it’s like.
Although this road is often uphill, it’s also true we always move forward. Ivan makes enormous efforts to achieve this. Life shows us once and again, that great transformations don’t happen from one second to the other. They happen one step at a time. With no magic wands. We’ve learnt to savour every moment and let go of the fantasy of what Ivan’s life would have been like without autism.
Like all blue parents, I am concerned of what will happen when his father and I are no longer here to take care of him. Who is going to protect him against all odds? Who’s going to kiss him good night? And in those days that I am feeling fearful, I decide to think of the way life has always surprised us. In fact, it’s Ivan who keeps surprising us. Always. That’s why I need to be confident on all those things he still has to give.
There a no limits to get to the sky, there are simply other ways of getting there ”
April 30, 2017
Carina Morillo, proud mother of Ivan
President, Fundacion Brincar por un autism feliz (www.brincar.org.ar)