Hi – My name is J-Jaye Hurley and I am mom to a 7 month old baby girl named Reese, and mom to my 7 year old son, Jackson who was diagnosed with severe, nonverbal autism at the age of 2.
Jackson’s story is similar to so many diagnosed with ASD. We have come a long way since we first learned he had autism. In these five years since Jackson was diagnosed, he is not recovered, he needs daily therapy, consistent advocacy, constant care and continued 24/7 support. Autism is hard. Don’t let anyone tell you otherwise. It is hard as a mom because I can’t fix what is wrong with him; there are so many times I don’t know what is wrong when he is crying and needs help. Jackson will be 8 this summer; yet I have never been called mom or heard him say I love you. We struggle to eat out at restaurants; we rarely travel or go to friends’ homes. Jackson has no understanding of safety or danger, and needs help with all activities of daily living. Those are a lot of the things he struggles with. But I like to focus on his strengths. In these past 5 years, he continues to amaze me with his beautiful smile, his intense sweetness and optimistic love of life. In those quiet moments late at night, when he is making his “night time noises” and tickling my arm, I know how much Jackson does love me. He is now in the 1st grade and loves going to school – he started riding the bus this year which is a highlight of his day! And if you know Jackson, then you know he loves the water – he is truly his happiest self when he is in the pool, on a boat or even in the shower. If he could live on a houseboat, he would ditch us in a second! I also know how HARD he has to work for every little thing. I see how far he has come. And how far he has to go. I would never want to change Jackson or who he is, but I pray every day to find a cure to this disabling condition that prevents him from making friends, speaking or playing with his sister. Over these 5 years, autism has provided my family a community, a community that I didn’t ask to join, but am thankful now that I am here. Autism is not just one day a year, a walk or even a blue light bulb. It is a 24/7 reality so I feel that any chance I have to share our story, to talk about Jackson, his autism and what it means for his future and our life as a family, is another small step to lighting it up blue year round. It has been 5 years since I first learned of autism yet I still struggle with bad days – asking why him? Why us? So I forge ahead – working, talking, fighting, screaming – being HIS voice, as we work so desperately to help him find his own. I know I am not alone, especially in a room like this. Knowing I am not alone refuels my tank, it lifts my heart. I believe as you believe — that we WILL find a cure for autism. I believe that we will develop and implement a national plan for autism. I believe that we will end insurance discrimination and provide better, cost effective treatment options for all 50 states. I believe that each day holds new possibilities for Jackson – for all of us. Because of our journey with autism, I have met exceptional children and loving parents. I also have met his therapists and teachers who go above and beyond their job description because they love and accept my son for who he is. I am also blessed by a husband who walks with me side by side on our journey, and I am literally tickled pink by our new bundle of happiness. I continue to believe that answers and help are coming, and someday soon, we will find our cure.