Sunday, December 28, 2008

Long before Becca......

I had adopted James, my now twenty-five-year-old son. I was twenty-four and single when I got custody of him. He had just turned three but had been spending weekends (and longer) with me and with other members of my family for over a year. For reasons I won't go into, I had been feeling protective towards him even before he was born, and somehow I always knew he would be my son. I am not a person who wants to take children from their parents. But James needed to be adopted, and I wanted him. The adoption process took nearly three years.

Parents who want to recover their children from autism are often accused of not being able to accept a "less than perfect" child. Those aren't my words, because in my eyes my children really are perfect. This is the crap that we parents get thrown at us when we want to recover our children from a devastating medical condition. It couldn't be more untrue. Before I adopted James, he was developmentally delayed and appeared to have signs of autism. In fact, before he came to live with me he seemed to be more likely to be on the spectrum than my daughter ever was. He had very few words and would sit silently all day playing with his shoes. When held, his arms would hang limply at his side. I knew so little about autism then. My brother-in-law, a psychology major, observed him and thought he showed all the signs. That made no difference to me. I wanted to adopt him. It was my choice. As it turned out, James did not have autism. He had suffered unspeakable abuse at the hands of his biological mother. For three years he had been living a nightmare. I don't pretend to be a perfect parent by any definition. I made countless mistakes. However, when removed from the abusive situation, he did thrive, and with the care and the therapy he needed, he recovered to the extent possible when one experiences something so traumatic. It has not been easy for him. But at twenty-five he has graduated from college, works in a psychiatric hospital, and is a caring, thoughtful individual who is a wonderful son and friend, a person who gives back to the community. I am immensely proud of him!

I was a single parent until James was twelve, when I met Ron. At that point I had had enough failed relationships to make me not even believe in marriage. I had finally gotten to the point where I was happy to be single. I figured I would eventually adopt another child. But Ron and I became friends, and it wasn't long before I decided I was going to marry him. First I had to get him to at least ask me out on a date. Once that was accomplished, things moved quickly. We knew within a couple of weeks that we would be married. It was important to me that he wanted to adopt James and that he wanted more children. We were married the following year, in a big church wedding followed by a reception that was so much fun, our friends are still talking about it almost twelve years later. He and I had both experienced our share of hurt and loneliness, and it seemed that it was all behind us. We had so many dreams, all within the realm of possibility. I don't think we were being unrealistic, but we had no idea how our life would be turned upside down.

Almost as soon as we got married we wanted to have a baby. I knew I might have difficulty getting pregnant, but I wasn't prepared for the heartache of infertility. It was difficult to pursue fertility treatments because Ron was retiring from the Navy and we were getting ready to leave Rhode Island and move to New Jersey. Once settled in New Jersey, I found a fertility specialist, and after just one cycle of Clomid I was pregnant!

All mothers have dreams for their children, but when thinking of my baby's future I couldn't help but think of my son's past. I knew my baby would never have to suffer the way James had. She would be raised with so much love. I just assumed she would always be happy and content because she would be surrounded with love. I felt more prepared to be a parent this time around, being so many years older than I had been when I adopted James. I felt like I had dealt with a lot of baggage in my life and was a better and more patient person. And there was a certain self-satisfaction in thinking I was doing everything right. I think I was guilty of feeling a little smug. I thought if I ate right, took my vitamins, and got good prenatal care, I'd have a perfectly healthy baby. Before she was born I interviewed a pediatrician. I knew I would be the kind of parent who read all the baby books and would never be late with well-child visits and vaccines. I was determined to be the perfect mother!

Pregnancy was difficult. We decided the move to New Jersey had been a mistake and couldn't wait to leave. Ron had retired from the Navy and was not happy with his new career. James, now fifteen, was dealing with serious depression. Back in Rhode Island, my mother was showing signs of Alzheimer's. We moved to Pennsylvania just one month before Becca was born. I was not close to my in laws at that point, and all of my family and friends were in Rhode Island. I felt terribly lonely and isolated. It was a stressful time for us as a family, but I felt everything would be OK once Becca was born.

My new obstetrician in Pennsylvania didn't seem concerned when I went ten days past my due date. The nurse practitioner in the practice wouldn't even let me see the doctor and didn't listen when I said I couldn't feel the baby move anymore. I had Ron take a day off work and go with me to see the doctor because I figured they would listen to him. They did. What's more, the doctor looked at the results of the non-stress test and sent me to the hospital for another test. In the meantime, we had had another ultrasound, and it showed little amniotic fluid and a deteriorating placenta. I was furious at the doctor for letting me go so far past my due date. When I got to the hospital they admitted me right away with the intention of inducing labor. But after running some more tests it showed Becca's heart rate had dropped, and the doctor had to do an emergency C-section. I was terrified that I was going to lose my baby right then and there. I remember thinking we had come all this way and I was so in love with my unborn baby, and now I was going to lose her. The doctor assured me my baby was going to be fine but couldn't go through a long labor and that was why she had to do a C-section. I calmed down a little and started to realize that at long last I was going to see my little baby girl.

Becca was born on September 15, 1999, at 1:26 AM. When I first held her she was extremely alert, eyes wide open looking right at me. She latched on and nursed right away with no difficulty. I felt such a sense of relief. She seemed perfectly healthy. I don't remember much else about that night other than being completely exhausted, and too excited about my new baby to sleep much. Ron and I spent most of the night talking about her.

I have no recollection of ever signing permission for a Hepatitis B shot. Maybe I did, but I don't remember doing so. Becca spent part of the morning in the nursery, and when she was brought to me she was fussy and unable to sleep. I didn't think that was unusual for a new baby, but I was disturbed by the fact that she now had difficulty nursing. There had been no problem at all right after she was born. We struggled with it throughout my hospital stay. The lactation consultant said I was doing everything right. But we just couldn't get her to stay latched on. I was frustrated by the long hours she had to spend in the hospital nursery every morning. Instead of taking each baby in there one at a time to do whatever it is they do in there, they would take all the babies at once and wouldn't bring them back until they were done with all of them. I asked to leave the hospital a day early so that we could get into a regular nursing routine at home. But it wasn't any better at home. To make a long story short, she lost more than ten percent of her birth weight and became so weak that the pediatrician said I had to supplement with formula. She couldn't tolerate milk-based formula and we quickly switched to soy. She became stronger, gained weight, and very quickly became the alert wide-eyed infant I had held the morning she was born.

Becca met some of those early milestones right on time. She held her head up quite early and seemed very aware of her surroundings. Very early on she started babbling and cooing. She loved to interact with us. It was easy to entertain her. She laughed when we did silly things. She seemed to be trying to talk directly to us when she was amused by something.

Two things concerned me. One was that she was very gassy and often seemed uncomfortable after feedings. The other concern was that she hated being placed on her belly. Other than that, I didn't see anything that concerned me in those early months.

I can't say I saw major changes after the vaccines. But when I look back at her records and how they coincide with her development, I can see where she started to regress with each vaccine. It seemed there was a cumulative effect,with the most significant, yet still rather subtle, changes taking place after the DTaP. When she was about eight or nine months old I was concerned that she wasn't crawling like a lot of other babies. But I was told some babies never crawl. She could remain sitting up if placed in a sitting position, but she couldn't pull herself into that position. By one year she wasn't pulling herself up to stand, and she wasn't even close to walking. Her one word was dada.

I made the mistake of scheduling her one-year visit right on her birthday. It wasn't the kind of day when you want to hear bad news. The pediatrician wanted her to have a developmental evaluation, as she was behind in her motor skills.

It took three months to get an appointment with the developmental pediatrician. It was at that visit that we got a diagnosis of global developmental delay. We started early intervention services right away. Becca made great progress, but I had no idea that the services were not nearly enough. I had never even heard of ABA or Floortime back then.

There's so much more, but that's basically the beginning of her story. She's now nine years old, and my entire world revolves around her and her recovery. I hope someday I will be writing that she truly is recovered. That is my greatest dream!


  1. Thanks for sharing Becca's story. She is beautiful! There are so many things I can relate to - the difficulty conceiving, the "doing everything right" during the pregnancy, the stressful delivery...
    I pray that she will indeed be completely recovered.

  2. Thank you! I do believe , whether Becca recovers or not, that God has a wonderful plan for her and for all of our children. I'm actually much more hopeful than I might sound in some of my posts. I think I'm still venting years of hurt, but as much as I struggle with it, I do have great hope. As you can see from my post, I tend to be somewhat of a control freak, having to do everything for myself and do it perfectly, and that just isn't working. Letting go of that control, while still working hard for Becca's recovery, is my greatest challenge. That's why I love your blog. I think you're better at this than I am!

  3. "Letting go of that control, while still working hard for Becca's recovery, is my greatest challenge." You said it, sister!

  4. Lisa, thank you for sharing your story.

    Natalie had a global developmental delay also; she was late sitting up, didn't crawl until AFTER her first birthday, didn't walk until she was 20 months. She was a quiet baby but she DID interact, but at a year was when things really went downhill and she completely disappeared inside herself.

    I did everything "right" also. What embarrasses me the most is I was a "crunchy" parent in all areas except for vaccines - I exclusively breastfed Natalie and even gave birth to her at home with a midwife, yet I vaccinated her on schedule. I wish more than anything I could go back and change that.

  5. Chris, back when I had Becca I wasn't what anyone would call "crunchy." Other than baby-wearing and really trying to breastfeed (still regret that that didn't work out), I was pretty conventional. Hospital birth, with an epidural planned before I knew I'd have to have a C-section, vaccines all the way! This attitude extended into all other areas of my life as well. I really didn't think much about the environment beyond recycling. I thought there was a pill to cure almost every ailment. Autism changed all that. We all entrusted our children to doctors, to hospitals, to Big Pharma, and to our government, and that trust has been betrayed. That changes everything.


Before autism