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Facing the trauma of autism diagnosis

Former NFL quarterback Rodney Peete writes about dealing with his son R.J.’s autism. After meetings with teachers and specialists, the Peetes were given their son’s devastating diagnosis: “We think your son is unteachable.” An excerpt.
/ Source: TODAY books

In "Not My Boy!", former NFL quarterback Rodney Peete writes about dealing with his son R.J.’s autism. After meetings with teachers and appointments with specialists, the Peetes were soon given their son’s devastating diagnosis: “We think your son is unteachable,” “He’s never going to be able to look you in the eye” and “He’ll never be able to tell you he loves you.” After a period of anger and denial, Peete joined his wife, actress Holly Robinson Peete, in her efforts to help their son. An excerpt.

Chapter two: The wake-up call
By the time the football season was over, I was happy to be home so I could spend my time being the kind of dad I had always wanted to be. I wanted to be there for the fun stuff as well as for the dirty work of changing diapers. Every day with them held a surprise for me. I felt I could watch them grow and change minute by minute.

R.J. was more than hitting his milestones. He was hitting them early. He was strong and very well coordinated for a little guy. He started to walk before he hit ten months. I couldn’t help but think we already had the next in a long line of Peete athletic prodigies.

R.J. was quick mentally too. I would be amazed by the way he could figure things out. As Holly and I moved around the kitchen getting their meals, he watched how we opened the childproof cabinet doors. Around the time he said his first words, at twelve months, he had figured out how to open those doors himself. I knew I was supposed to be stern with him and let him know that this was not allowed. But it was hard to fight back a smile when he looked at me with joy and pride at his latest accomplishment.

He was also into pushing buttons in the car, as many kids are. You press this button and the music turns on. Then you press this button, and the music is different. We’d let him take his toys apart and put them back together. These were just simple toys, but he’d put them back together right. When he was reassembling things, he’d look up at me like, Heh, I got this right? We thought R.J. was a lot like I had been as a kid: social and adventurous, with a little streak of mischief in him.

Shortly before the twins’ first birthday, the whole family was invited to spend the weekend with friends of ours who have a beautiful home near Santa Barbara. We were the super-parents, with the porta-crib and everything anyone might need stuffed into the back of the car. The kids were pretty good sleepers at that point, and they slept the same schedule. We settled them down in an upstairs bedroom and fastened a childproof gate at the top of the stairs before heading down to enjoy a glass of wine before dinner with our friends. Just as we were sitting down to dinner, I heard a little shriek from R.J. Grappling hand-over-hand along the side of the archway, he came smiling into the room, ready to join the party.

Holly and I looked at each other with a mixture of very strong reactions. Oh my God! Were we bad parents for leaving him up there? How did he manage to get out of that crib, open the gate, and make his way down that long flight of slippery Spanish tile steps? What if he had cracked his head? At the same time, I was blown away by how he’d managed to make this epic journey on his own because he wanted to be where the party was. Oh my God, I thought, this kid is incredible!

Of the two of them, the child we were most concerned about was Ryan. The pediatrician had told us not to worry about her being so small, because girls catch up quickly. Unfortunately, she had muscle development problems. Her feet were splayed out, and she had trouble holding up her head well into her first year. All the family pictures from that time show big grinning R.J. looking right at the camera and Ryan with her head slumped to the side.

She was in physical therapy constantly for her first two years. She had to wear special shoes, and even when she finally started to walk, at fourteen months, she was always falling down and getting bumped and bruised. R.J. could do so many things so easily. He was a great climber and loved to crawl through things, while Ryan could be just sitting and fall over. We thought her problems were neurological, and we were always running to the doctor to get her tested.

I don’t want to sound like we were frantic with worry all the time. We were happy parents who were trying to do everything right for our kids. Holly was especially good at this. She had acute mommy radar for anything that was wrong, even the tiniest sniffle or cough.

We were already planning for their futures too. We’d found out that many of our friends had enrolled their children in a very progressive school that had a great program for two-year-olds, but it was hard to get kids admitted. Holly toured the school and loved the energy and attitude of the staff as well as the smart, child-focused curriculum. We used to laugh about how silly it seemed that we were stressing out about getting our kids into preschool.

Since they had an October birthday, the twins had to wait until they were nearly three before they could start the two-year-old program. In some ways, it was good that they would start a little later than the other kids because by that point Ryan would be stronger and more coordinated.

A few months before they hit that two-year mark, Holly took the twins in for a checkup with our pediatrician. They’d had ear infections and were both coming off a course of antibiotics. Holly asked the doctor if he would delay their next round of immunizations because she thought loading them up with that much medicine while they were still a bit weak from the antibiotics might be too much for their little bodies. She believes the doctor, a very old-school, by-the-book pediatrician, brushed off her concerns as those of an overly cautious first-time mom. He said he’d immunized hundreds of children and never had any such problems.

This didn’t sit right with Holly. Something about this disturbed what she calls her “mommy gut,” an instinct that moms have that goes beyond what professionals say. She asked him if there was any way he could break up the measles/mumps/rubella vaccination so that they would not have to get such a potent cocktail all at once. The doctor said that that couldn’t be done. Besides, the nurse said, the twins were behind in their immunizations. Part of the purpose of this visit was to get them all caught up.

Holly got even more concerned when she found out that they might be receiving more than just the MMR vaccine. She wanted to know what was in the shots and how many of them there would be. She remembers the nurse looked at her like she was psycho mommy, and told her to relax while she took R.J. in to be weighed.

Holly was sitting in another examining room holding on to Ryan, when she heard R.J. screaming, “No! Mommy!” She ran to R.J. and saw that the nurse had given him the MMR plus the second hepatitis B and the polio vaccines. The nurse said that it usually was easier with the parents out of the room.

Maybe it was easier for the nurse, but for the next eight years, nothing about R.J. would be easy for our family.

At home that night, R.J. had a terrible fever and started shaking violently, just short of something like a seizure. Holly called the pediatrician to ask him what could have caused this. Should we take R.J. to the hospital? The doctor was unruffled and told us that it was not a reaction to the shots. He recommended that we give R.J. some Tylenol to help him with the fever and he promised that R.J. would be fine. R.J. had a terrible reaction to the Tylenol and we rushed him to the emergency room late that night. We believe he went into some kind of toxic overload shock. After that, we didn’t hear the words “Mommy” or “No” for about four years.

I know there is a lot of controversy in the medical community about what causes autism. Researchers and doctors reject parents’ claim that vaccines, particularly the MMR, can trigger the disorder. Many parents believe that the mercury-based chemical thimerosal, which is used as a preservative in vaccines, reacts dramatically in the immature immune systems of some children and triggers autism. In the last decade, the number of vaccinations has increased dramatically; now kids get more than thirty different shots, most of them before the time they reach eighteen months.

While the government and the vaccine manufacturers have worked to reduce the amount of mercury in the vaccinations, receiving those shots gives children a big dose of toxins to process. The symptoms of mercury poisoning look an awful lot like what children with autism suffer: rocking, circling, flapping arms, walking on toes, difficulty with swallowing or chewing, digestive problems, oversensitivity to sound and touch, loss of speech or failure to speak, mild to severe hearing loss, staring and unprovoked crying, injuring self (such as head banging), social isolation, poor eye contact, and blurred vision.

The Centers for Disease Control says that the symptoms of autism start to show up around the same time that kids receive most of their shots. The CDC advises parents that this does not mean that the vaccine is the cause, and they can cite several studies to justify this position, but just to be cautious, the CDC recommended in 2001 that vaccine manufacturers reduce or eliminate thimerosal in vaccines.

Holly and I, and many of the other parents of children with autism, believe that the scientists who have concluded that there is no connection between vaccines and autism should have designed their studies differently. Our kids tend to be sensitive to foods and stimuli that other children tolerate without any trouble. We’d like to see studies performed on vaccines and children who have gluten sensitivities or are allergic to dairy, for example. We believe it might be true that kids with those difficulties shouldn’t have to follow the strict vaccination schedule, at least not until their bodies have developed further.

Many of us believe that science should give this idea of a sensitivity-specific study more of a chance rather than rejecting it in favor of studies on a general population of young children. Too many families have had to suffer through a huge — and in many cases permanent — change in their children for science to turn its back on us and refuse to explore this question.

That day of the vaccination marked a major turning point for R.J. Within a week of the shots, he stopped responding to his name. Normally, when I came in to pick him up from the crib where he slept with Ryan, he’d be standing up alongside his sister. They’d look at each other and crack up, laughing at one of those private jokes that only twins can understand. Shortly after the shots, R.J. withdrew. He stopped making eye contact and he didn’t laugh much. Often he’d just lie curled up in a ball staring at his hand or the wooden slats of the crib, lost in a world of his own.

Even his interest in trying to figure out how things worked changed. Before the shot, I’d watch him study the chain that went around a bicycle wheel and try to figure out how that made the wheel move. As soon as it made sense to him, he’d look my way with a big grin that said to me, See, I figured this out! After the shot, he was obsessive. He’d just sit there watching the chain go around and around, staring at it for hours. I’d try to get him to change activities, but he’d go right back to that chain. He also started with odd new behaviors: flapping his hands and flicking his ears. His speech stopped evolving too. He went from learning new words to saying the same thing over and over again.

We asked our pediatrician what was happening with R.J., and he acted as though what we described was no big deal. He reminded us that boys develop differently than girls. Growing up isn’t a straight line, he said. He’d catch up just like Ryan had pretty much caught up with him physically.

I see now that we were willing to accept this because he was telling us what we wanted to hear. There was nothing wrong with R.J. He was just going through a phase, a temporary setback that he’d recover from before he started school in the fall. We were overjoyed when we found out that Ryan and R.J. had been accepted into our top choice for preschool. The teachers there were well trained and compassionate, and we expected that they would help R.J. learn more social skills and encourage him to make friends.

I thought that trying to keep up with the other kids would be a huge motivation for R.J. to snap out of whatever phase he was going through. Maybe once he was around the other kids he’d start to do what they did. That would help with speaking too, I thought. If R.J. really was a member of the Robinson-Peete family, there wasn’t anything that could have prevented him from talking. Our pediatrician confirmed everything I had hoped about how getting R.J. out into the world would be a way to break his isolation.

The school session started in the fall, when I was right in the thick of the football season, so I wasn’t monitoring R.J. as much as I would have had I been home. Holly kept telling me that R.J. didn’t seem to be catching on at school, not the way Ryan was. We talked to our pediatrician again, and he told us the same thing. I repeated it back to Holly whenever she was telling me how worried she was. He’s just a little boy. He’s two. Give him time. He’ll catch up.

When the football season came to a close, I took over the job of driving the kids to school. When I got them out of their car seats the first day, Ryan was ready to go. She was ready to run right into the yard where the kids had forty-five minutes to play before the indoor part of the school day began. R.J. was indifferent. I had to take him by the hand and lead him into the yard. He didn’t resist. He just didn’t have any enthusiasm.

After we said our good-byes, I did what my dad used to do with me. I hung back by my car and waited until I was pretty sure that the kids wouldn’t be aware I was still around. I’m tall enough that I could see over the fence around the yard. I could see that Ryan had joined her friends and that they’d all run over to the finger painting table. My eyes scanned the yard to see who R.J. was playing with. He was alone by the water fountain, watching the spurts of water as he turned the knob on and off. Look at him, I thought. He’s always trying to figure out how things work. As the minutes ticked by and he remained at the water fountain, my heart sank. Where were his friends? For all the money we were paying for this school, you’d think the teachers would try to get R.J. included in a group of kids or bring him over to join one of the activities. He was all alone.

The next day, when I took up my post at the fence, it was basically the same. This time R.J. was in a different corner, spinning around in circles and flicking his earlobe. Wasn’t someone going to help him? Holly and I were scheduled to meet with the twins’ teachers and the head of the school that next week. At that meeting, I was going to tell the teachers what I wanted them to do to help R.J. get through this tough passage.

That next week, when we arrived for our meeting at the school, I could tell something was off from the moment we entered the room and saw their grave faces. We settled into our chairs and an ominous silence settled in.

“We’ve talked,” the head of the school said, “and we think your son is unteachable.”

I looked at Holly and she looked at me. Our mouths hung open. What kid in the world is unteachable? Were they saying that R.J. didn’t have the ability to learn? Who would ever say that about a three-year-old?

“We’re saying there is something going on with R.J. and that we are not capable of teaching a special needs child,” the head of the school continued.

All I could think was, He’s three. You don’t have to teach him trigonometry.

When we drove away from that meeting, I was angry and Holly was upset. Why are we paying all this money to this school? They didn’t say, “Let’s figure out how we can help this kid.” They threw their hands up in the air and said, “We don’t want to spend the time to do any extra work trying to teach him. This kid is not worth the effort.” This was the school we’d fought to get the kids into.

By the time we got home, both of us had cooled down a bit. We had to admit that we had concerns about R.J. and how his recent setbacks had made Ryan more clingy. The first thing we decided to do was take R.J. out of the school. Then we began our search for an expert who would check out our kids and tell us if there was anything that we needed to be concerned about.

Holly asked around and found the best pediatric specialist in Los Angeles. She was booked months in advance, and it was difficult getting an appointment for the twins to see her. Fortunately, she had a cancellation, and we grabbed it. It was excruciating to sit in that waiting room for three hours while the twins were in her office with her. We had no idea what was going on. She didn’t have an observation window so we could see how they were responding to her. We were on pins and needles.

She finally called us in and we took our seats. Holly grabbed my hand.

“Your son is autistic,” she said. “And your daughter is too.”

Holly started to cry and the doctor handed her a box of tissues. I stared straight at this doctor in disbelief. She’d said it in such a cold way. For a specialist who had to deliver devastating diagnoses all the time, this woman had absolutely no bedside manner.

“There is a spectrum of autistic behavior, and your son is very low-functioning,” she said. “Your daughter functions at a higher level. You’re going to have to get your son into a program right away. He’ll need speech, physical, and occupational therapy and special tutoring.”

Holly was bawling by this point. I was surprised she was able to hear what the doctor was saying.

“I’m trying to prepare you as parents. I’m going to be honest with you,” she said. “He’s never going to be able to look you in the eye. He’ll never be able to tell you he loves you unprompted. He’ll never tell you he’s hungry. You’ll have to learn how to read his clues.”

Holly’s hand was gripped tight with mine while she disintegrated in the chair next to me. I couldn’t believe what I was hearing. He had made eye contact. He used to let me know when he was hungry. How can she use the word “never”? This couldn’t be my R.J. she was talking about. Not my boy!

“It’s my experience that kids his age and at his level of severity don’t generally come out of this. I want you to be prepared that this is a real uphill battle for him. If you don’t start right away with these treatments, he will slip further and further into the autistic world,” she concluded.

Never during the hour we spent with her did she say, Here is our plan. Call this person for speech and this person for occupational therapy. There are a couple of schools in town that do great with kids with autism and use my name when you call. And check his diet out because there might be something going on with his digestion. Here’s a nutritionist who is familiar with the kinds of digestive problems kids with autism have. You need to get him another test to see what things he is allergic to that might affect his autism. None of that. Just the cold evaluation.

There was nothing I could do. As a man, you want to be able to protect your family. You want to be able to soothe your wife. There was nothing I could say because this so-called expert had just evaluated our kid, but she’d also robbed me of all of my power. “Robbed” is the right word. I’m giving you this diagnosis and you’ve got to take it because I am the expert.

We walked out of her private office to collect the twins. Ryan was very affectionate, but she looked a little confused as to why Mommy was crying. R.J. was oblivious. We put them back in the car, and as we were driving back home, I had an overwhelming feeling of hopelessness. I felt like a failure as a parent and I started to blame myself. I had wanted to be the kind of dad who was there for them all the time. Why didn’t we recognize this earlier? Was this hereditary? Did we do something wrong during the pregnancy?

We had been responsible parents. We had asked the right questions. Where had we failed them?

We got back into the house and went through the motions of feeding the kids and getting them ready for bed. I don’t remember anything of that evening. My mind was so clouded. I wanted something to do, someone to blame, but I had no target for my feelings. Holly couldn’t stop crying. And in a few days, I had to leave. Football winter mini training camp was starting again. Thank God I was playing for the Raiders in Oakland, so I would be close to home.

Excerpted from “Not My Boy!” by Rodney Peete. Copyright (c) 2010 HollyRod Entertainment. Published by Hyperion. Available wherever books are sold. All Rights Reserved.