Thursday, June 13, 2013

My Middle Child Is Autism

"He's perfect. Go home and enjoy him."

And with that, a decade flashed before my eyes. We smiled wistfully, wondering what would have happened 10 years ago. If we'd only heard those same words back then.

But in 2003, when our older son was two years old, we heard something completely different.

"He's definitely got some issues...you should look at some programs."

And we did. A recommended appointment with a pediatric neurologist confirmed our deepest fears – our child was not "neuro-typical." In fact, he was on the so-called spectrum.

Thus began a decade of painful truths and discoveries. Programs we loved that he "aged out" of. Programs we fought to get him into, that ultimately tossed him aside. Programs we hated that did more damage than good.

We adapted. He adapted. We learned how to maneuver within the system. We became better advocates and made the system work for us.

At one parent-teacher conference, I recounted how our son had attended four different schools in the past four years. "On the way home last week, he listed them all," I told the teachers. "When he finished, he said 'Next year I'll go to another school.'" One educator buried her face in her hands, not wanting to lose her composure in front of everyone. Another quietly said, "Tell him that he isn't leaving here."

As we grew older, people inevitably asked if we were planning to have more children. After all, we weren't getting any younger. And the odds of having a second child on the spectrum grow exponentially as the parents age.

It was a reasonable question and the obvious answer was autism, but not the way most people thought. Yes, we had fears. But our mindset was, "Get the first kid established somewhere before expanding the family."

The first time we seriously thought about a second child as when we got the original diagnosis. The second time was right when the NEST program magically changed its requirements and bounced him. The next 2-3 years were no fun at all for anyone and he wound up with medicated and under the care of a pediatric counselor from all the harm and mental anguish of the experience.

Once we were finally ready to consider a second child, we put ourselves through rigorous trials: Genetic testing, bloodwork, readings. Conception was not the top priority. We even put ourselves through a genetic selection process, which attempts to time ovulation to give perspective parents a better chance at a girl. (Although autism hits girls harder than boys, they are only 20 percent of the total cases of autism.)

After we succeeded and a baby was on the way, test results of the amniocentesis went to the obstetrician first. He regretfully told us, "It's a boy." I think we were each saddened for the same, but different reason – we would both relate to a female child in a whole new way. But at least we were familiar with the operating manual for a young boy.

People who know us remember the final four months of the pregnancy as a blur of fetal echocardiograms and sonograms due to an incipient heart issue. Whatever deity you believe exists was messing with our heads. If this kid wasn't on the spectrum, he might be born with a defective ticker.

His birth (and surgery at 10 hours old) were happily uneventful. His older brother, originally fearful and nervous, grew to appreciate and love his new sibling. They now share many of the games we put away 6-7 years ago, due to stimming and inappropriate game play. And when his big brother doesn't play fair, the younger kid speaks up, "Ben not playing right!"

Because the second child was premature, we were assigned to visit a developmental pediatrician. My wife once asked, "Is this a new policy?" We were told no, this has always been the policy. "Well, our son was born premature in 2001 and we would have LOVED to have been sent to a developmental pediatrician! It would have saved us a lot of time and heartache!" Clearly, there was no answer that would have made us feel better.

For the next 2 1/2 years we visited the developmental ped and watched the baby like hawks. Was that repetitive behavior? Was he starting to walk too late? Do we take those toys from his hands if it looks like he's obsessively flipping them over and over?

Which brought us back to the developmental pediatrician's office today, two weeks shy of 31 months (2 1/2 years plus one). He aced most of the age-appropriate tests. The associate asked him to point to things in the office and he did. When the associate left, our toddler continued the game, asking US to locate things that HE saw.

Finally the developmental ped came in and shocked us. But in a good way. "I'm going to miss seeing that child and his beautiful red hair," she said. "But we're releasing him from the program."

"Releasing him?" my wife sputtered.

"He's perfect," she replied. "You could bring him back in six months, when he turns three, and I'll just tell you again how perfect he is."

I don't think it hit us until we left her office. I don't think it's fully hit my wife, who did make a followup appointment.

For 10 years the menace and mystery of autism has lingered over our house. It pervaded and changed all of our lives. We have a 12 year old and a 2 1/2 year old. But our middle child is really autism. He's been with us for 10 years and has kept us up at night more that either of his brothers.

I watch our older son struggle with homework as our younger son begins to experiment with imaginative play, crafting two-character plays using small Winnie the Pooh figures. Ben takes a break and his little brother drops the toys and runs to be with him, desperate to interact, push aside that middle sibling, and make a connection.

My wife wants to err on the side of caution and six months is a drop in the bucket after everything we've been through, us and the kids. We doled our inoculations incrementally when they could have been cocktailed, which added expense and doctors' visits. We paid for specialists and evaluations out of pocket to disprove other specialists and evaluations that we disagreed with. So we'll take an extra six months, but really the words from an expert gave us unexpected relief. They were from a woman who deals with developmentally-delayed children on a daily basis. And our boy walked in, did everything she asked him to do, and more.

So we will hold our breath for another six months and hope the center holds. But it reminded me that a decade ago, we were told our situation was less than perfect. And that profound truth pounded some deep, dark holes into our timeline.

We have two lovely children and one middle foster child who steals our time and money. The worst thing a parent ever has to do is live through the death of a child. But honestly, I dream every night that I will outlive autism, my middle child.

EPILOGUE
On January 9, 2014, we returned to the developmental pediatrician with our younger son, now three years (and six weeks) old. Her renewed assessment was that he does not show any signs of autism. She did not even attempt any of the basic testing and instead asked him a series of questions, such as "What color is the sky?" and "What happens to ice when it melts? What does it become?" His answers were "Blue" and "Snow," incidentally.

After 15 minutes, she made a simple, declarative statement: "He is awesome and delicious. His level is closer to a four-year-old. He answered in complete sentences that were understandable. Go home and enjoy him."

The next day, my older son turned 13. When the toddler heard us moving around in the dining room, he insisted on coming downstairs to wish his older brother a happy birthday before he left for school. They exchanged a hug and my older son grinned happily, waiting for the school bus.
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