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Autism hits home

As sextuplets achieve milestones, mom notices one boy lags behind

Each one of them stayed in the neonatal intensive care unit (NICU) at Akron Children's Hospital for nearly two months after being born 12 weeks prematurely. Each one of them struggled to learn to breathe on their own and drink from a bottle. Each one of them was a miracle for even surviving birth in the first place.

At the beginning, when the kids all came home from the hospital, the days were a blur of feedings, diapers and the unrelenting demands of caring for six preemies with the help of a huge corps of volunteers. There was very little time to worry about when each child hit all the usual baby milestones like rolling over, sitting up, crawling, walking and talking. It just seemed that they did each new thing one right after the other. Except for Kyle.

Kyle took the longest to get the hang of bottle feeding in the NICU. He was the last to roll, to sit and to crawl. We thought he'd never walk, since he kept right on crawling for at least six months after everyone else had taken off on two feet. He was happy and healthy and ate like a little diapered pig, so we tried not to compare him too much to the others.

At some point, I began seeing lists of the warning signs of autism popping up everywhere. They were in parenting magazines. They were in the newspapers and on the Web. I even found one on a box of cereal.

Every time I found a new list, I would read them and mentally compare them to Kyle: Doesn't talk or babble (check), interested in spinning objects like ceiling fans (check), makes little eye contact (check), doesn't respond when his name is called (check), does not interact much with other children (check), has repetitive behaviors like jumping on his toes and flapping his hands (double check), does not
react well to changes in routine (big check). . . .

The lists went on and on, but I always dismissed autism as soon as I got to the item about most autistic children not liking to be cuddled or held. Kyle was a cuddle bug from the very first day. He was the first baby I got to hold 24 hours after their birth. He has always loved to be hugged, tickled and wrestled with, and was generally a very happy baby.

Hoping for progress

Gradually, as Kyle got older and passed his second birthday, our pediatrician began to voice his concerns about why Kyle wasn't talking, and asked whether we wanted to have him evaluated for speech or hearing problems. We had Kyle's hearing tested and found it normal in spite of repeated ear infections. We dismissed the doctor's questions about Kyle not talking because he'd been so late to do everything else. It just took him longer, but he'd get there eventually, I reasoned.

You may think that I merely had my head in the sand at this point, but life was busy with so many little ones to watch over, and time slid quickly by. Keith and I tried not to worry too much about Kyle's issues, and almost unconsciously learned to cope with the things that sent him into tantrums or hysterical screaming fits.

He couldn't tolerate drumming or clapping, and church services on Sunday were always interrupted by Kyle's wailing if we suddenly began singing or applauding when he wasn't expecting it. Strangers and changes in routine also had the potential to send Kyle into orbit, so we tried to carefully guard him and prepare him for new experiences ahead of time.

Before I knew it, it was time for Kyle's third-year checkup, and the pediatrician again mentioned that Kyle's lack of speech was concerning. Kyle had actually said a word or two just before that, so I used those examples to convince the doctor that more time was needed for Kyle to catch on. Plus, he had just begun preschool, and I wanted to give his new speech therapist a chance to see what she could do with Kyle.

Last May I wrote a column about how I spent my Mother's Day. I talked about Kyle jumping, squealing and flapping in front of the TV, and how he preferred to sit quietly with me rather than run around in the yard with his siblings.

A few days later, a kind reader e-mailed me a very tactful suggestion that Kyle had autism. She mentioned that she worked with autistic children and asked whether we'd ever had Kyle evaluated for the disorder. At the time, I was still heavily in denial about the whole thing, hoping he'd magically start talking one day and I wouldn't have to face my growing fears that something was deeply wrong. I responded politely but firmly and pretty much told her to butt out, as I'm sure she expected I might do. But she had planted a mental seed that just would not go away, and I am thankful now for her kind words.

Learning about disorder

I began to read about autism, and allowed myself for the first time to consider what life might be like if what I feared was actually confirmed. I prayed a lot, and quietly discussed autism with Keith, sharing what I'd read in the brief minutes before we fell into our typical exhausted sleep.

I began to watch Kyle carefully and compare him more closely to the children I was reading about. I found out that, although there is much that can be done to help a child with autism, there is no cure for the disorder that affects communication and social skills. Autism began to seem like a very real and very frightening possibility.

In August, after taking one of the other kids to the pediatrician for some crud they had, we began to discuss Kyle again and the doctor finally insisted that I take Kyle back to Akron Children's Hospital to be fully evaluated. Neither of us said ''autism'' during that conversation, but I know both of us were thinking it.

Phone calls were made, many lengthy questionnaires and medical histories were filled out and we began the nearly five-month wait until a specialist could see and evaluate Kyle. Not being one to just sit around and wait happily, I began looking into ways we could try to help Kyle in the meantime.

A friend gave me a book on gluten (wheat) sensitivity in autistic children, which opened my eyes to lots of other physical problems Kyle was having, like failure to gain weight and increased fussiness after eating. After much research, we made the leap and put Kyle on a strict gluten-free diet.

 

At first I felt like the proverbial Wicked Witch, denying him foods he loved like macaroni, pretzels, crackers and pizza, but with a little trial and error, we found decent substitutes for most of his favorites. It wasn't very hard to get Kyle to eat those darned expensive substitutes since he will eat pretty much anything; the real challenge was in convincing his brothers and sisters why they didn't need ''special food,'' too!

Tiny miracles

About a week after beginning the gluten-free diet, I witnessed a small miracle: Kyle looked at himself in a mirror for the first time in his life. This may not sound like much, but for a boy who never once, even as a baby, had the slightest bit of interest in his own reflection, this was HUGE.

He began running (another thing he almost never did) back and forth to the bathroom just to look at himself dozens of times a day. He began to smile and laugh more, and the perpetual worried wrinkle he wore on his forehead disappeared somewhere in Week 2 of the diet. And over the course of three months, he gained six pounds and finally got tall enough to move out of the 2T pants he'd been wearing for a year and a half.

As chief diaper changer, I noticed that the gritty, sandy mess that had filled Kyle's diaper for years soon disappeared and was replaced with normal stool, which also thrilled me way more than you would believe. We tried excluding dairy from Kyle's diet, too, but didn't really see any improvement from that like we had with eliminating gluten. So, after a two-month trial, we phased dairy back in.

The most positive and exciting change was in Kyle's demeanor. He slowly became more tolerant of noise, crowds and schedule changes, and finally got to the point where he could sit in church again without throwing a fit and trying to get away. Kyle began to make more eye contact with us and with his teachers, who reported slow but steady progress every week. He even would turn occasionally when we'd call his name. Once in a while, we'd swear we heard a word, but he would never repeat it when asked, so we were always left wondering.

Adding supplements

At a suggestion from our pediatrician, we added fish oil supplements to Kyle's routine. I'd read that fish oil helps the parts of the brain that control concentration, memory and language, so we thought it was worth the experiment.

The first day, I fought with him to get a dribble of oil into his mouth and didn't mention it to Kyle's teacher at school. She brought him out at the end of the session and raved about his excellent concentration and how he had really attended to all the tasks she'd asked him to try. The second day, after another round of fish oil, his speech therapist walked him out and was beaming as she told me she'd just had the best speech session ever with Kyle, where he picked his own picture when asked, a first for him. So the fish oil became a permanent addition to Kyle's diet.

To help his language development, Kyle's teachers gave him a button that said ''More!'' when he pressed it. The other kids thought it was hilarious to see him beating away on that button at the table, and then watch me scramble to see what it was that he wanted ''more'' of. One morning, after I'd just refilled his cereal and was on the floor mopping up someone else's milk spill, I heard the thwackity-thwack of Kyle hitting his button.

''More! More'' said the button. ''Just a minute!'' I said, still wiping. ''More! More!'' repeated the button. ''Hang on! Almost done!'' I said again. ''More! More!'' the button insisted. ''All RIGHT, Kyle! I hear you!''

I finally growled in my least patient tone, and then promptly started laughing at the stupidity of what I'd said. Here I was trying to teach the poor kid to talk, then chewing him out when he was banging away at the button and talking in the only way he knew how. So I got him ''More! More!'' tasty gluten-free cereal and mentally kicked myself for a few minutes.

Fears confirmed

Keith and I were impatient for the holidays to come and go so we could get to January and the appointment at Children's. Finally the big day arrived. We said a lot of prayers, packed up our bag of treats and toys for Kyle and headed off to confirm the news we already knew in our hearts.

Kyle performed like a champ, demonstrating the skills and quirks that we were so familiar with, but had been afraid he'd be too anxious to show a stranger. After several hours of observation, discussion and interacting with Kyle, the doctor told us that our suspicions were correct, and our son did have autism. She said we were already doing good things for him by having him in a therapy-intensive preschool, putting him on a special diet and giving him the supplements. We took a deep breath, looked at each other and said, ''So what do we do next?''

Kyle, worn out by an afternoon of challenges, pulled his favorite pink chenille blanket over his head and fell asleep in the corner as we discussed various therapies and additional tests with the doctor. The doctor said we had to begin pushing Kyle harder to communicate.

She also suggested teaching him simple sign language so he would have a way of talking until real words came. Kyle was still snoring as we carried him to the lab for a blood test, but quickly woke up in full scream when we held him down so the technician could draw two very large vials of blood.

Facing the future

Although we both seemed matter-of-fact about the diagnosis the day we got it, it took Keith and me several days to really come to grips with the situation. I was 99 percent sure Kyle had autism before we went in, but there was a big mental leap required to handle that last 1 percent where near-certainty becomes reality. In the end, both of us said a prayer of thanks that we weren't facing much worse, and decided to get on with the work ahead.

I began showing Kyle basic signs, which he thinks are hilarious for some reason. Last weekend, I was working on the signs for ''Mommy'' and ''Daddy'' and getting nothing but giggles out of him. The other kids got into the act, too, and pretty soon the entire table was full of little hands enthusiastically signing ''Mommy,'' ''Daddy'' and ''thank you'' while Kyle laughed and laughed.

I was pretty sure he was just messing with me and not paying attention, until Sunday morning, when he came down the stairs and into the kitchen to greet me. I looked down and said hello to him, then watched in amazement as he deliberately put his thumb on his chin in the sign for ''Mommy'' before popping that thumb into his mouth and marching away without any idea what a big deal it was.

I have no idea where this new road is going to lead our family. We are by no means autism experts and are looking for answers, just like any other family that has been touched by this disorder. I know we will have setbacks and miracles every day, and we'll just have to deal with them as best we can, with lots of prayer and plenty of faith and hard work.

We have only begun to explore what this diagnosis means for Kyle and for his siblings, who have all wondered when he will begin to talk. Lucy asked me recently, ''Is Kyle a baby?'' I explained that Kyle is not a baby, but he doesn't talk yet because his brain works differently than everyone else's does.

Big brother Connor was listening intently and said, ''I can't wait to hear what Kyle's voice sounds like!'' I just smiled and said, ''I know it will be beautiful!''


Jennifer Hanselman is the author of Party of Nine: The Triumphs and Traumas of Raising Sextuplets + One, which is available in stores and online now. Visit http://www.partyofninebook.com for information.

 

Each one of them stayed in the neonatal intensive care unit (NICU) at Akron Children's Hospital for nearly two months after being born 12 weeks prematurely. Each one of them struggled to learn to breathe on their own and drink from a bottle. Each one of them was a miracle for even surviving birth in the first place.

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