Alicia Ballard Westbrook is a native of Hendersonville, NC and is the mother of three boys, Eli, 5, Danny, 4, and Luke, 2. Danny was diagnosed with autism when he was 2 years old, and is a student at the Grotto Preschool. Below is her story.
My first words of hope were "ready, set, go." I was standing at my kitchen counter fixing my boys a snack, when, Danny, my son with autism walked in. He looked at the food, and then he looked at me and then he said, in a clear, precise voice, "ready, set go!" At first, I was shocked and a little confused. Ready, set go…what? But it quickly became clear that he was telling me to hurry up with the snack! Before this, if Danny spoke, he was repeating words he had just heard. He’d never spontaneously spoken and I think it was the first time he tried to use words to communicate a want or need. It was a lightbulb moment for him. He understood that words had meaning; that words could get him the things he wanted and needed. I looked at him in that moment and I didn’t see his disability, his autism. Instead, I saw possibilities, determination and hope. The journey to this moment had been a tough one and honestly, I’m not sure if I would have ever made it without the support of the St. Gerard House and the Grotto Preschool.
When Danny was first put in my arms, he was simply perfect. I looked at my sweet, sleeping son and thought he could grow up and do anything. The pages in the book of his life were all blank and waiting for him to fill them. When he was diagnosed with autism, about two years later, I felt like that book had been taken from us. Autism had become the main author in his story and we had been pushed aside.
His diagnosis wasn’t a huge surprise. I, despite all my trying not to, had seen the writing on the wall. Having another child close to Danny’s age made it blatantly clear that Danny was not developing typically. Danny wasn’t talking, he didn’t make eye contact, he paid people no attention most of the time. He ignored toys and instead would just flip a string or piece of paper in his hands.
Even though I knew in my heart that Danny had autism, hearing the doctor say it was devastating. It was almost like an amputation, all my joy and hope had been cut off. The doctor was kind but realistic. He told me that Danny had classic autism, the most severe form. When I asked if my son would ever live independently, He said, “Group homes can be considered a form of independent living.” When I first held Danny, I never pictured him living in a group home. This was not the life I wanted for my son.
I thought I might feel better after we had the diagnosis. At least I knew what we were dealing with. I read, I researched, I made sure Danny was in every kind of therapy our insurance would cover. I tried to be determined and optimistic but the reality was I was exhausted. I was a fairly young mother with an almost 4-year-old, a 2-year-old with autism and a newborn. My husband was supportive but he was working full-time trying to keep our family afloat. My other children were essentially being raised by my mother and grandmother while I took Danny to therapy, attended endless meetings and made countless phone calls trying to get all the help I could for Danny.
Also, the day to day work of taking care of Danny was difficult. Some days, he would have screaming tantrums that would literally last hours. I would know he wanted something but I just couldn’t figure it out. He also was prone to get into things. If Danny was quiet, it usually meant he was somewhere finger painting with toothpaste, eating dog food, playing in the toilet or just making a huge mess. Also, Danny would escape the house and wander. Usually, I found him before he was in any sort of danger but after one terrifying incident when we were visiting my in-laws, where I found him at the bottom of their swimming pool, I began to worry not just about what would happen when Danny was an adult but even if he would survive to adulthood.
Living with autism was also lonely and isolating. Whenever I took my children out, it usually didn’t go well. There was the time at Chick-fil-a, where Danny kept licking the window and another mother asked why I didn’t have my son in some sort of therapy for his problems. There was another mother at a birthday party who told me, after listening to me explain why Danny insisted on eating sand, that having a child with autism was her worst fear. I felt like the only thing other people had to offer me was judgment or pity.
After about a year after Danny’s diagnosis, my well of determination and hope was running dry. Danny hadn’t made any huge gains, even with the help of a public specials needs preschool and all the private therapy insurance covered. He had no useful speech, he still didn’t make eye contact and he seemed completely locked in his own world. My other children were growing up with a mother who was not only physically absent a lot but also emotionally drained. My husband would come home after working to a needy preschooler, a screaming baby, a tantruming 3-year-old and a wife who just wanted to go somewhere and hide. My family was suffering. Autism was still, despite all my efforts, writing my son’s story, my family’s story.
I wanted to give up. I thought, it is what it is. I need to let it go and quit fighting autism so hard. I needed to be there for my other children and I felt like I was cheating them by being so focused on their brother’s autism. But, then, I would look at Danny and see how trapped he was by this terrible, terrible diagnosis and think, how can give up on him? I had to reach through the cage that autism had created and get my son out. But, I didn’t know how. So I prayed. I prayed for guidance, I prayed for someone to understand, I prayed for hope. And I found it when I discovered the St. Gerard House.
Another parent of a child with autism told me about the St. Gerard House, the Grotto preschool and ABA therapy. I had heard about ABA but it wasn’t covered by our insurance and totally out of our reach financially. I also didn’t know much about it but I was willing to try just about anything to help Danny. So we applied to the Grotto and thankfully, Danny got in. After he started going to the preschool, things started to change with him. I learned how to deal with his tantrums and they’ve decreased. Danny’s eye contact has improved and I feel like he’s making connections with people. He smiles when I come to pick him up and he wraps his little arms around my neck and returns a hug. He’s potty-trained now. He can speak a little. Ready, set, go.
While the teachers at the Grotto were teaching my son to do puzzles, to color, to use the potty and talk; Caroline, Rachael, the teachers and the parents of the other children at the St. Gerard House were teaching me how to hope and believe again. I am no longer alone in this battle against autism. My family is no longer alone. I don’t know the ending of my son’s story yet, but I do know that the people of the St. Gerard house are going to be with us as we fill the pages of the story of his life. I know the rest of this road is not going to be easy but before the St. Gerard House entered our lives, I didn’t want to know what the future held for us. I was terrified and I honestly I didn’t know if I could find the resolve and determination to keep going on, to keep fighting. But now, when I think of the journey that lies before my family, all I can say is “ready, set, go.”
Copyright 2011, Alicia Ballard Westbrook. Do not reproduce without permission.
