On April 19th, fifteen people will run the Boston Marathon in support of the Doug Flutie, Jr. Foundation for Autism. Each member of our team has their own, personal reasons for wanting to take on this challenge. Following is a very moving letter written by one of the members of Dougie's Marathon Team:
So many thoughts, emotions, opinions and ideas surround this one word.
As a parent whose beautiful, perfect, two-year-old son received this diagnosis, I can tell you it’s complicated.
The parent. For you, life halts. Dreams die. You weep. You panic. You ask why. You mourn. You try to fight it. You convince yourself you will “recover” your child from this stranglehold…whatever it may be. It consumes you. Isolates you. Exhausts you. You miss the babyhood of your children who follow. They potty train themselves, learn to talk, dress and become care-givers before they can read. You struggle to remain a friend, a wife, a sister, a daughter when all you want to do is fix your child, be the mother you know you need to be. You quit your job. You read constantly, study alternative medicines. Your family can’t do the things other families do. Your child can’t handle it. You struggle through common daily activities. Your friends and family don’t know how to help. So you drift further away.
And the stress. You have anxiety, perhaps panic attacks. You lose patience and feel like the worst parent on the face of the earth. All you can do is try to find balance in your life, try to find a minute to take care of yourself. They all depend on you and you must stay healthy.
Doctors study your subgroup: parents of children with special needs, particularly autism. It is the highest stress-level group they can find. Your group also has the highest divorce rate. You join support groups. You spend thousands of dollars on various therapies and doctors, special diets and detoxification protocol. You spend on trainings to teach you to teach your child, on therapists and special schools. You may even sell your home or move in search of resources.
You question the cause. Was it something I did? All the mercury-laden fish I ate while pregnant? Was it the vaccinations and antibiotics? Was it silver fillings? Perhaps something in the environment: years of pesticides, artificial ingredients, canned goods, various toxins. Are autistic children more highly evolved people? So many theories. So few answers. You become a health-food junkie, an environmentalist, more spiritual.
In your house, you need to install a revolving door for the years of therapists and specialists that frequent it, sometimes daily. They watch your family eat, sleep, poop and play. They offer advice, criticism, theories and ideas. Many become close friends because they understand you and your family. But then they move on and a new one replaces them.
Sometimes it all works and your child is “quirky” but otherwise successful in school and life. What a relief. Sometimes, in spite of valiant efforts, it doesn’t.
Your child. He sees you mourn, cry, fight, and struggle. What’s wrong with him? He’s not sure, but clearly knows something is. He withstands hundreds of blood draws, doctors, vitamins and supplements. He eats special foods. He sits with you in hyperbaric chambers, infrared saunas, with spiritual healers and sensory therapists. He rides horses, takes swim lessons. He has special teachers. They try to play with him, make him talk, point to pictures, use his hands to make signs and go potty in the toilet. They want him to stop playing with his fingers, to look at them, to do what they ask. He watches as therapists use tickers to determine whether he knows the difference between red and blue. Has he truly mastered it? Does it really matter? Should we praise him, and what type of praise? Can he read? Count? People argue over what is best for him. Years of this go by.
He can’t wipe himself, bathe or dress himself. He doesn’t speak, play, or interact with peers. He yells and doesn’t sleep. He chews everything and steals stranger’s food. You have to bolt the doors and watch his every move because he isn’t safe when left alone. He develops seizures and self-injurious behaviors. He won’t be in GATE, or an all-star. He won’t earn a scholarship or maybe even a paycheck. He will never marry or live on his own. You can’t compare him to other children. And if you’re lucky, you will outlive him so you know he will be cared for always.
He knows he upsets you. Frustrates you. Makes you cry. Makes you mad. He can’t help it. He, too, doesn’t want it this way, but he just can’t help it. He has OCD. He pulls hair or begins to pinch and hit himself because it’s how he communicates. He clings to you and any shred of his self-confidence. And all you can do in the end is just love him.
This is what goes on in homes with children who have severe autism.
But there is something remarkable that comes out of all this. Your priorities and perspectives change. You see the world differently and it’s a blessing. You love to a degree you didn’t realize was possible, and it’s enough. You work harder and are stronger than you ever imagined. You see beauty in so-called imperfection. You don’t sweat the little things and find joy in simplicity. You know you can’t handle it all on your own and learn to ask for help or to let some things go. Your children are stronger, deeper, more loving, giving, tolerant and accepting. It’s what matters. Recovery from autism is no longer your goal. You realize it’s all OK as it is, and you just want him to know how truly remarkable he is and how much you love him. He makes you a better person. Child becomes teacher, or perhaps always was.
I am hoping this little dip into the autism world will inspire others to understand, accept and want to help those affected. Today, very few people haven’t been touched in some way by autism. It is a growing population and it lasts a child’s lifetime. There are organizations focused on cause and prevention, on interventions, on offering services and activities to families living with autism. All are equally important. It doesn’t matter to whom you donate or why. Just get involved. Even an understanding glance to a struggling parent or an informative talk with your own children about acceptance, tolerance and the importance of being a friend to special needs kids is priceless.
I have chosen to run for my son, Genaro. For all he has gone through and all we have learned. I am running to make a statement about autism. I am running for all those who live with autism today and those who will be diagnosed tomorrow. And I am running for myself. Please show your support.