Next Step Therapy Blog: ‘Before Autism’

Next Step Therapy, submitted the following article by guest blogger Emily Eggleston: “Before Autism”

When my husband handed me my son for the first time, I felt his warmth and weight then peeled back his blanket, counted ten fingers and ten toes and breathed a sigh of relief. Sending up a quick thank you to my God, I assumed that since he looked okay that everything was going to be okay. That was five years ago.

Becoming a parent changed my life. Becoming a parent of a special needs child changed who I am as a person.

My husband and I marveled at how this tiny being, a mixture of both of us, could make us so happy, tired, worried, and proud all at the same time. Every milestone was cause for celebration.

Jeff would puff up with pride when telling people how big Owen was at birth, confident that he was destined for greatness, a pro football player, perhaps? I thought he was the most handsome baby that I had ever seen. He was so calm and quiet, a good baby, and I was certain that was because of my parenting. When I look back now, I picture karma chuckling and saying softly to herself, “Just you wait, my dear child.” One of the many painful lessons I’ve learned, is to never, ever get overconfident about anything. Life has a way of balancing things out. It’s much less painful to be humble and non-judgmental from the start than to live through an experience that makes you eat your pride filled words.

Shortly after Owen turned one, we decided to enroll him at our local daycare for a couple of hours twice a week. I was working part-time and needed the break, and we thought that getting him around other children his age would be good for him. The first morning that we dropped him off, he screamed and cried. The staff assured us that that was normal and that he’d be fine once we left. Crying myself, I kissed him good-bye and walked out, confident I was doing what was best for him. The crying didn’t stop. On good days, he’d calm down after an hour or so, but every time a baby cried he’d meltdown, and the staff were unable to comfort him. The only way they could calm him down was by separating him from the crying baby.

Eight long and agonizing months later we pulled him out of daycare. His crying never stopped. Some days he would cry for two hours straight. The head staff member told me one day that Owen wasn’t meeting some of the milestones for his age, like putting pop beads together and pulling them apart. I thought she was nitpicking because Owen wasn’t interested in pop beads. I was absolutely certain that if he were interested, he would be able to pull them apart and put them back together just fine. I joked with the staff on Owen’s last day saying that he’ll have to get used to hearing a baby’s cry soon because his little brother was due in a few months. I’m sure karma was laughing then, too.

My second pregnancy is a bit of a blur. It was similar to my first pregnancy, but now I had Owen to care for and was a little more prepared for the demands of pregnancy. We chose to have another c-section and scheduled it for November 15th. It was strange scheduling our child’s birthday. Fast forward nine months and there I was, strapped to the table and numb from the waist down again. The doctor pulled a very large 10lb 14oz baby Eli from my tummy and held him up for us to see. I immediately fell in love with him. Owen paved the way for his little brother: everything was a first with him, the pregnancy, the c-section, holding a newborn baby.

With Eli, I was more relaxed and could focus on him and that overwhelming feeling of love washed over me. By the time I got out of surgery and back to my room, they had taken Eli away. His lungs weren’t filling with oxygen properly, and he needed to be in an oxygen tent under close surveillance. I felt completely helpless, sitting in a hospital bed, recovering from surgery and unable to hold my baby. The physical ache that comes from not being able to hold your newborn baby is almost unbearable. I held Eli for the first time twelve hours after he was born. I was only allowed to hold him for five minutes until he had to go under oxygen again. The nurses said that I could sit next to his oxygen tent and talk to him, but I had to get out of bed and into a wheelchair to do it. It’s amazing what a little motivation will do.

With Owen, I catered to my incision. I was terrified that if I moved too much the incision would pop open and my guts would fall out. My recovery with Owen took much longer. With Eli, although painful, I was out of bed the same night as my c-section in order to be with him. For a faster recovery, I highly recommend moving as early as possible after having a c-section. Four days later, I was standing straight, moving, sitting and bending as if I’d never had surgery. Eli’s lungs were working perfectly, and we were on our way home. I missed Owen so much and was looking forward to having our family together.

It didn’t go as well as I had hoped. Owen was very standoffish with me. He didn’t want me to hug or kiss him. He was very wary of the baby and steered clear of him at all times. We thought that he was jealous and that after a couple of weeks, he’d come around. But the first time Eli cried, Owen melted down. Not just a tearful, whiny tantrum-like meltdown, he came completely undone. Hyperventilating, eyes wild, falling on the floor, thrashing about and screaming for upwards of a half hour. Nothing that we did comforted him. Finally, Jeff picked him up and took him out of the room and away from Eli’s cries. He was then able to begin to calm down. Everyone that we talked to said to give him time, that this was normal. “All children have a hard time adjusting to a new baby at home.” they would say. But it only got worse.

In two months, our new family was beginning to unravel. We began separating the kids almost constantly. When Jeff was home, he’d be upstairs playing with Owen, and I’d be downstairs with Eli, and then we’d switch. Having both kids in the car together was a nightmare, so we began driving separately. All of those expectations I had about Owen holding his baby brother for the first time, or giving him a kiss went out the window. Something was terribly wrong, and I didn’t know what to do. See Life After Autism.

Around that time, my mother-in-law started mentioning autism. I completely dismissed the idea as ludicrous. Owen wasn’t autistic for god’s sake. I didn’t know anything about autism, but I knew THAT wasn’t what was wrong with Owen. Finally, after two months of living hell, I talked with our local pediatrician about referring us for an autism evaluation. I wanted to rule it out, so I could silence that fearful voice in my head that kept saying, “maybe he is.” The pediatrician wasn’t concerned about Owen because he had no speech delays and had passed the autism checklist at his 18-month and 24-month office visit. For my peace of mind, they referred me to a pediatric neurologist a couple of hours drive away.

The night before Owen’s appointment with the neurologist, I googled signs of autism in toddlers for the first time. There were several red flags that Owen did and several that he didn’t do. I felt sick to my stomach while staring at the screen and crying. I thought since he wasn’t showing all of the signs that he couldn’t be autistic. At least that’s what I kept telling myself. My husband was certain that he wasn’t, so I reassured myself that he would be fine. I thought that after the evaluation, we would scratch autism off of the list and continue to look for help for his sensitivity to his brother’s cry.

I had no idea that January 22, 2013, was the day that our life’s course would be forever changed. That our outlook and perspectives on life would shift, and who we were as people, parents and a family would never be the same. All of our expectations about family and children would be challenged and shaken to the core. That day our son was diagnosed with autism. Any naivete I had left vanished as my eyes and ears were forced open to see and hear the truth about our first born son. I no longer could continue to live my life blissfully unaware.

~Emily’s Puzzle

Emily’s blogs can be found here: www.emilyspuzzle.com.