This “In Their Own Words” essay is written by Valerie Fuentes. Valerie has participated in the Pittsburgh Walk Now for Autism Speaks a a member of team “Hike for Mike” for eight years.
I feel broken … or I should say my heart feels broken. At times it feels heavy, too heavy to carry around on a daily basis. Other times it feels lonely, so lonely it hurts. Often my heart feels full: full of love, of happiness, of peace. Sometimes, it can feel cold and empty; or full of anger and sadness. At times, it is too much to bear. Too much …
I am a mother of a special needs son. Mikey is my blessing, and I am proud to be his mom. He gives me great joy and happiness, for he not only allows me to see the world through his eyes, but he teaches me about patience and acceptance. Mikey is by far more tolerant of this world than I am, for I see the world mistreat him and label him. He is completely misunderstood and, sad to say, feared.
I, on the other hand, am not as kind or as accepting of this world. Ignorance, cruelty and apathy abound, and this is the world Mikey lives in. As his mom, I love him unconditionally. But often, this is not enough. Unmistakably, it is a battle, a daily battle, to protect Mikey from the world. Nonetheless, it is my job to integrate him in this cruel world, and help him adjust, to fit in. Yet all I want to do is hold him close to my heart, keep him from harm and hurt, to scream at all the ignorant people in life.
Mikey is has autism and is nonverbal, and the world is not willing to accept him. Often it is the lack of knowledge and awareness of this disorder that feeds the fear and the ignorance. Labels are easier to deal with, not the person. How unkind, harsh and merciless the world can be to anyone “different.” As his mom and his protector, I want to stop the hurt. As his voice, I feel obliged to educate, to end the ignorance, and to teach kindness and respect.
There are many positives about being a mom of a special needs child. The road is not an easy one, and you may often travel it alone. However, the journey will change your life. Watching Mikey live each moment to the fullest is indescribable. He has taught me how to embrace life, and how to take time to enjoy the little things. Mikey has touched many hearts, and he has changed many lives. Learning to see the world through his eyes has been an enriching experience. He has shown me how to deal with adversity, and how to put a smile on my face everyday. Most of all, I understand patience and empathy for the first time in my life.
Despite the many positives of being Mikey’s mom, I must admit I long to genuinely understand the world in which he exists. The world of autism is unconquered; it is a place where minds drift and voices fall silent. Sometimes I feel it is a dark and empty place; other times, I picture it as a parallel existence, a place where a higher intelligence dwells. Where does Mikey go? How can I reach him? It often feels like I am moving in slow motion, trying desperately to pull Mikey out of the water. He will drown if I do not make this daily attempt.
Learning about the world of autism is a journey, one which I embrace daily. Each and every day I pray for a miracle for my son, and every night I thank God for the day I spent with Mikey.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.