Are You “Aware” Enough of Autism? I Wasn’t, and Now I’m Atoning for It

Atonement. Webster’s defines it as this: noun 1. satisfaction or reparation for a wrong or injury; amends.

Depending on what you are making amends for, that can be a tall order. Believe me, I know.

In February 2007, my brother and his girlfriend had a baby boy. D-Man we call him. He was gorgeous, smiley, playful, snuggly, and calm. Always so happy. Although our family was a little worried about my brother and his girlfriend’s ability to care for this precious child, we tried to be there every step of the way to help them and, honestly, to intervene if necessary. D-Man’s parents were young, hadn’t mastered the skills of adulthood quite yet. They weren’t the cleanest of housekeepers, and they still had a taste of the party lifestyle. All of these things rang in my head constantly, making me overprotective and over analytical of every move they made as parents.

It was around D-Man’s first birthday when I started to see the signs. The dreaded signs of neglect that I had always feared. Donovan was coming over with summer pajamas in the wintertime and no jacket. He was putting everything in his mouth but food. You name it, he would try to eat it. Batteries, fabric, dog food, dog toys. The list never ended. He always looked so tired. The biggest dark circles under his eyes that you’d ever seen. Did the poor child ever sleep? Was the partying keeping him up all night long? Every little thing worried me.

Around 20 months, he got a Polar Express train for Christmas, and he loved to watch the train go around and say: “This is the Polar Express!” It was so exciting to watch him growing into a young boy and out of his baby stage. But a couple months later, after he turned two years old, he just stopped talking. He didn’t want to play with his toys anymore, and he didn’t love to snuggle me like he used to. He was becoming increasingly angry and throwing things around. He cried all the time it seemed, and he was never happy anymore, no matter what we did to try and sooth him. Children don’t just stop speaking and snuggling. That doesn’t happen when things are all right. He wasn’t all right. He was being hurt, traumatized, and neglected. I knew it with everything inside of my soul. I was terrified and mystified that my brother, this loving, kind, patient man, could let this happen, let alone be responsible for it.

He would call me all the time. Why can’t I get him to sleep? What do I do, his stomach hurts and he can’t poop? Why won’t he stop screaming? I would give him all the suggestions that worked for my daughter, and I insisted to him that, if he would just listen and do them right, D-Man would be fine. D-Man just needed more love, more time, and more food. Surely he wasn’t giving him enough of those things or else this wouldn’t be happening.

D-Man and his father

One day a few months after his second birthday, the police called me. They had found D-Man wandering around our city by himself in nothing but a diaper. What the hell!? They had returned him home to my brother, who had been sleeping. He didn’t even realize that D-Man had gotten out. What kind of a parent doesn’t even know their child is out of the house at risk of being hit by cars? This was a new level of horror for me. My brother received a ticket and had to appear in family court. He pled guilty to child negligence and from then on, CPS was in our lives. I wish I could tell you that it was the last time this happened, but it wasn’t. The very next month, D-Man got out again. This time he was found in the next neighborhood over by some nice ladies who took my tiny nephew, who couldn’t tell them his name or where he lived, into their arms and held him until the police came. Another ticket. Another court date. This time, parenting classes and random check-ins by their newly assigned case worker. I couldn’t understand what the hell was wrong with them. How hard was it to keep their child safe? If he can open the child locks, then get new ones! If he can unscrew the door hinges with a screwdriver that he smuggled into his pants, then keep the tools locked up! This wasn’t rocket science; this was parenting for God’s sake!

The last straw came for me when D-Man was two years old. His parents dropped him off at my house for the first time, I saw the physical abuse he was enduring. His nose was clearly broken, he had two black eyes, and his forehead had a dent in it. A dent! I immediately took him to the children’s hospital to have him evaluated. The doctor came in and confirmed that D-Man’s nose was in fact broken. She told me that she had never seen a dent in a child’s forehead like that but, thankfully, his scans and x-rays came back negative for fractures or brain bleeding. I told her the story that D-Man’s parents gave me about him banging his head over and over on the coffee table. I told her how they claimed they tried to restrain him, but he would bang on anything and everything near him, including his crib bars. She told me that a child of two years old would never bang their head to the degree of force that it would take to cause that damage. To her, it was clear that D-Man had been abused, and she called CPS. For the first time ever, I realized that D-Man was being hurt on a level that I had never though possible. It wasn’t quite registering, but by this time, the rage was setting in and I was ready to fight. I had never seen anything like this, and I knew that D Man needed to be kept safe. It was so clear to me that he was being hurt. How could anyone look at him and not see that? He needed help and now. After going back and forth for a couple of months, trying to convince my brother to let us take D-Man and raise him until they were in a better place, an offer that my brother never once entertained and was furious at, my husband and I decided to file a formal complaint with their CPS worker. We had had enough. It was May 14th, 2010.

The case worker said that once this was filed, she would have no choice but to remove D-Man from their custody and we could take him home pending a placement hearing. The emotions that I felt were vast and varied but I had to protect my nephew. At all costs. So we filed.

CPS called me later that afternoon to let us know that the temporary custody order had been put into place, and the parents had been officially notified. Now it was up to them to do the work, prove to the state that they were fit to have D-Man back. The process would be long and hard, and they would have to commit to every step of the way or else they could lose custody permanently. Hearing her words, so cold, so final, made me wonder if what we had done was the right thing. How did we know for sure? The evidence was all over the place. But still, it felt horrible, and I couldn’t place it at the time, but it felt sickening in my belly too.

Around 5 p.m. that evening, my brother called. He was quiet, shocked, hurt, and sad. Of course he was. He had just lost custody of his son — the one he always played with, sang to, read to, and said that he loved more than his own life. It was all just becoming too real. Then he said to me, “Take good care of him.” It was the last thing my brother said before saying that he loved me.

Four hours later the police came to notify us that my brother had committed suicide. He was dead. His final goodbye was a plea that he was a good father who loved his son. He didn’t want to fail anymore. He wanted D-Man to be well cared for, and he knew that we would do that for him.

Oh, my God. What had we done?!

Three months after he died, the answers came like a knife to the gut. Per CPS orders, we had to take D-Man in for an autism screening because he failed his early intervention testing. We honestly thought this was just a formality. We never thought in a million years that he would come back as having autism. Children were born with autism. D-Man was completely normal from birth until around two years old. Children with autism didn’t break their own noses and scream for hours on end with no reason. Right? Children with autism didn’t run away from home while still in diapers. That didn’t make any sense. No. No way. D-Man wasn’t autistic, he was abused. Neglected. He was traumatized. WASN’T HE???

As I sat there pleading my case with the team who diagnosed him, I will never forget the look on the psychologist’s face and what he said next: “Mrs. D, I am sorry, but you are in complete denial. This child is severely autistic. He will never speak to you, he will never hug you or look you in the eye. He will never use a toilet, and if I were you, I would start looking for a residential facility for him now because the wait lists are long and you won’t want him around when he hits puberty and gets angry.”

I must have sat there for at least 20 minutes, not talking, not moving — just sitting, absorbing what they were telling me. As I sit here now typing this, tears running down my cheeks, I don’t have the ability to convey to you the feelings that I felt as the realization of truth washed over me. You see, I don’t have the chance to call my brother and apologize. I don’t have the chance to tell him how wrong I was or how stupid I was to believe that he would ever hurt his own child. I can’t admit my disgusting self-righteous attitude. And I can never take back that phone call to CPS. I can never go back and listen to the boss I had who handed me Louder Than Words, by Jenny McCarthy, and actually read it in time to save my brother. To learn and to know all of the red flags of autism that doctors, police officers, and case workers told us couldn’t possibly be anything other than abuse and neglect.

D-Man today

I can only go forward. I can only work every single day to save other children and never let what happened to us ruin another family like it has ours. I can only make sure that I am sharing the truth about autism, its causes, and its treatments to any and every person who will give me a minute of their time. And I can only keep healing D-Man, who is now my adopted son.

Because I can’t atone. It’s too late. My brother is dead, and nothing will ever change that. But I made a promise to save D-Man. No matter what it takes. And he is recovering. Today, the same boy they told me to institutionalize is now talking, goes to school, has friends, plays sports, and loves to tell jokes. The best part is that every time he smiles, I get to see my brother again. We are saving him. My husband and I opened a clinic last year to help families treat their children with autism as well. Through a grant that we set up in my brother’s name, we see patients from all over the country at little or no cost so that families who otherwise wouldn’t have had access to care, can now save their children too. Every child that comes into our practice is one step closer to making things right. I don’t know if I will ever feel as though I have accomplished that. But I do know that I will never let my brother down again.

I love you little brother. Turtles.

~ Rainmaker

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