I write about my kids all the time. I’m very open about my parenting and how it is impacted by our oldest’s special needs. I share our origin story all the time in person. It is Autism Awareness Month now and I feel the need to write it down and I hope that you will share it with anyone with a child that is possibly on the spectrum or dealing with a developmental delay.
Benji was our first child. He was born in 2003. Ron and I had limited experience with children, only a few nieces and nephews around us. We liked kids but neither of us had spent any substantive time around them. So when we received this gift, this smiling beautiful baby boy, we were so excited. We were nervous too. The rule was “Don’t Break Him.”
Benji was a happy boy with juicy cheeks and thighs. We affectionately called him Buddha because of his big round tummy. He was such a sweet bright boy. At 5 months, Benji was mimicking me when I’d sing to him, trying to make sounds just like me. I was amazed at this. It was really remarkable to hear a baby do that. Who knew? He started crawling a few months later and found his feet just after his first birthday. By then, he’d stopped mimicking my singing. He’d stopped attempting to speak at all. Over the next few months we noticed that he was not using any words. We had a neighbor whose son was 8 weeks younger than Benji, and he was beginning to talk. Benji was eerily silent. He was incredibly active, exhaustingly so once he started to walk. He’d run back and forth in our house, almost as if he was on a rail. If we went to the playground, he’d make his way to the highest surface possible. He’d stare blankly at nothing, almost like he was feeling the wind on his face. It was odd behavior for a toddler, but I like the feel of the wind on my face, so I thought nothing of it. But it became clear that you couldn’t take your eyes off him for a second, or he’d climb something. Anything. Our house was two stories with a catwalk. I probably lost hours of my life behind him running back and forth on that catwalk, trying to find a way to climb the railing.
My bff kept him while I worked when he was an infant. I was under the illusion that I was going to just keep working, as I had been. The thought of staying home with him did not cross my mind. I did however, start my own business, and worked from home quite a bit. Initially I thought I could watch him and work, but it was impossible. I was drowning because he never sat still. At the time, no television shows would pacify him. There was no way to distract him into play time. He wouldn’t tolerate a play pen. So my college friend and professional nanny took over for me, and we settled into a routine that worked for our household and my business. The schedule worked well, but we noticed he still was not speaking. We decided to let him go to Montessori for a couple of hours a few days a week, hoping he’d pick up more language by being around other kids his age.
Benji was about 15 months when I mentioned casually to his doctor that I was struggling. Benji wasn’t speaking. He had no words. He would not make eye contact. He didn’t want to be held, but he couldn’t be left on his feet for more than a second before starting to run back and forth, wherever we were. He was already walking on his toes, constantly perched with his heels in the air as if he couldn’t bear to have them touch the earth. I couldn’t do laundry or cook unless someone else was in the house with him. Then we found the Backyardigans. Something about the music in that show mesmerized him, allowing me to get work done in 30 minute spurts. But the biggest issue that I mentioned to my doctor that day? He would not let me hold him. He would hug me when he saw me, and immediately run off. He didn’t seem to want me especially. I couldn’t calm him. She asked about his toys. Did he have any favorites? No. Was he attached to any dolls or toys? No. Does he play with toys? Well, he plays with trains. He lines them up in a row. Does he play with anything else? He will play with almost anything that he can line up in a row. I want you to see a developmental pediatrician she said.
The same week of that pediatric appointment, the director of the Montessori he attended asked to meet with me. She’d noticed Benji in class. He didn’t seem bothered by the other kids, but wasn’t interacting with them either. He spent most of his time in the class playing in the corner alone. He particularly liked the cotton ball station. He enjoyed lining up the cotton balls like trains. Outside he seemed happy, but he always climbed the slide over and over. He didn’t play with other kids. He didn’t try any of the other toys or equipment. Just the slide, over and over. The day of that meeting was the first day I heard the word Autism. The Montessori director was a wonderful woman, married to a pediatrician, who asked her husband for an assessment and performed it on Benji during class. She shared the results with us and said we should check with his doctor.
The next few weeks were a blur. I read everything I could about autism. There wasn’t much. We saw the developmental peds doc. She said he presented with every typical symptom of autism. Katie Couric did a story on the Today Show about autism and the early symptoms. She described our son. We spoke with longtime friends whose child was diagnosed a few years earlier. They offered a lifeline to us because we not only had no idea what to do, but neither did anyone else. Not really. There were organizations that dealt with developmental delays, but Benji was diagnosed before he was two, which was not normal at the time. We tried private orgs that said he had to be more severe for them to treat him, and state organizations that presented a plan that sounded like I was putting Benji in their hands completely. I didn’t trust that. We met with Babies Can’t Wait. I know they provide great help for some, but I had a hard time getting past the intake process. We ended up putting him in the Walden School at Emory Autism Center on the suggestion of our friends. He was the youngest student they’d ever had.
The diagnosis led to a lot of changes. The business I started would eventually close. With Benji going to a really expensive private school, we couldn’t afford a nanny any more. I was pregnant with Ace. Most of Benji’s therapy occurred at school which was great. But therapy is not cheap, nor is it a quick fix. We moved closer to Emory. Benji would scream for the entire ride home if you didn’t drive a certain route, and using the same route every day from Decatur to Fairburn is almost impossible in Atlanta traffic. So we moved closer. We did whatever we needed to do to make sure Benji received the care he needed. This put a strain on our marriage and our finances. We struggled mightily.
In the 14 years since we heard the world Autism, so much has changed. We are recovering from the financial setbacks. Our marriage and family unit are stronger than ever. Battle tested. Benji is doing really well thanks to many amazing hands over the years. We experienced some serious challenges, but we also encountered some angels in disguise. Raising Benji has taught us so much. One of the largest lessons I’ve learned is there is no one way to be successful. When faced with this diagnosis and not many examples of adults living with it, I decided we wanted Benji to live his best life. It may not look like what I dreamed for him. We didn’t know what would be possible. But Ron and I both decided not to frustrate ourselves or Benji with holding him to a standard that we weren’t sure he could meet. We wanted him to be happy. Whatever that looked like. So that allowed us to take each day as it came, and meet him where he was. I believe this made a big difference in his progress. We let him tell us what he was capable of, and we went from there.
The other huge lesson that I learned is to assume goodwill, always. Along this journey we saw many doctors, nurses, health professionals, teachers, therapists, administrators. Some of them, like all people, were better at their jobs than others. Some were kinder and some were better with kids. Some sucked and needed to go home and start over. Some were probably in the wrong field. We decided to take none of this personally. They were human. We advocated for our child, we asked for things and received pushback. We pressed and were guided to alternatives. It has been a give a take all these years. But we’ve had tremendous professionals working to help our kid get better. I could have been offended, often. There were meetings I left in tears and times when I was ready to mama bear someone across the table from me. But a good friend taught me early, and its worked so far, to be grateful for his progress and believe that everyone in the room wants what is best for him until they prove different. This method has made adversarial meetings friendly, and has helped us receive the very best of some mediocre situations.
If I shared any advice to parents, other than my two biggest lessons, it would be to get your kid all the help they need. Don’t be afraid of your kid getting labeled. Don’t listen to people telling you nothing is wrong. Don’t ignore delays in development that could linger and cause problems down the road. Don’t wear a blindfold. Don’t just pray for it to get better. Act. Don’t listen to people who are negative. Don’t underestimate what is possible for your kid. Don’t buy everything on the market that says it can help. Advocate for your kid. Ask questions. Don’t leave their fate in the hands of educators that are overwhelmed by the needs of the population they serve. Be the squeaky wheel. Love your kid for exactly who they are. Be kind, your child is watching.