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When I wake up every morning, the first thoughts that come into my mind are: “Are my children safe?”
My first thoughts always concern what might have happened in the hours since I fell asleep and what
might happen in the day ahead that could change all of my tomorrows.
I can only explain by sharing my family’s story, the events that have changed our every perspective and influenced our every decision since. In September 2002, I was living in San Diego, working full-time as an education consultant with a major publisher and preparing to give birth to my first child, a boy, with my husband, Trey, a lieutenant and pilot in the U.S. Navy. We had been married for just under a year, and I was due to deliver Benjamin right around our one-year wedding anniversary. Trey was not home at the time; he was on a tour of duty serving our country flying SH-60 helicopters as part of the post-9/11 efforts in the Persian Gulf. Though not happy about it, I was prepared to go through childbirth without my husband by my side—as so many other women before and after me have done. Luckily, I would have my mother and aunts with me.
It was the middle of the night on Sept. 5, 2002, when I received the call. I was used to middle-of-the-night calls—they often came if my husband was in port in Dubai and was able to grab the opportunity to use the phone. The time difference meant we shared conversations whenever time allowed. Roused from sleep, I started to speak when I was interrupted by a voice that did not belong to my husband. The voice of Trey’s squadron’s commanding officer came through the line and spoke to me words that no person should ever have to hear. There had been an accident. Trey’s helicopter had crashed into the waters of the Persian Gulf. There had been casualties. My heart sank deep into my chest and my body heaved. I strained to listen as I felt my world close around me. Trey had survived, but there weren’t details as to his state. More words, vaguely recollected: one death, three seriously injured. He would call me later as he learned more information. Prayers were relayed. I said, “Thank you,” and the line went dead. I held the phone and shook, realizing that tears were streaming down my face. My stomach started to contract. My husband was alive. He was in a crash, but he was alive. Someone had died. My stomach contracted again. In the hours to follow, I would learn that I had started to labor at that moment, silently and slowly, and that Trey had, in fact, several lacerations and broken bones, a concussion and other injuries that would reveal themselves in the coming years with the passage of time. The final outcome was that after several days on a medical ship, Trey was flown back to the U.S. for medical assistance and to recover. I was lucky—Trey arrived home one day before I went into hard labor, two days before our one-year wedding anniversary and four days before Benjamin was actually born. The reality is, he had almost died in the Persian Gulf just weeks before. And now, in childbirth, it was to be me and our son who were facing an uncertain future.
Giving birth to Benjamin was, without question, the most difficult thing my body has ever done. I labored for 58 hours. Benjamin’s delivery spanned the course of three days. His heart rate would drop, I would roll to one side, his heart rate would pick up and even out, and then inevitably it would slow again. We repeated this dance for hours. Finally, I could push, and after several failed attempts, doctors decided to force Benjamin into this world.
Too weak to push any longer, a stranger climbed on to he delivery table, straddled my head and pushed on my stomach at the doctor’s order while Benjamin was pulled from my body with forceps. I was torn in two. Benjamin was lifeless. I didn’t notice right away. I was exhausted and seriously injured. My husband, mother, two aunts, the chief of obstetrics, our attending, our obstetrician, and 10-plus interns and medical students all observed silently and waited while the neo-natal intensive care team tended to Benjamin. Trey was next to Benjamin. The room was a bustle of activity, but was virtually silent as I questioned everyone: How is he? Is he okay? What was happening? Why could I not hear his cry? Then I saw him , my beautiful baby boy. He was bluish, he wasn’'t really moving and his response levels were low. The doctors applied pressure to my uterus to curb the bleeding until they could attend to me, and with fear, my family and I watched as they stimulated life into my son’s newborn body. They vigorously rubbed him all over, they repeatedly cleared his airway with suction trying to elicit that first cry, they administered oxygen, they immersed him in a cool bath, and a few minutes after he was born, we heard his very weak cry. A squeak, really. From then on, we called him “Squeakers.”
If I had delivered Benjamin 20 years ago, I am not sure I would have lived. I was in surgery for two hours following his delivery, and though I knew my body would never be the same in ways I had yet to learn (I have had several reconstructive surgeries since his delivery, and will most likely have several more), I couldn’t begin to know what lay ahead for my almost 9-pound newborn son. Shoulder dystocia, the doctors said. Benjamin’s shoulders were wider than his head was large, so he got stuck during delivery. They had to pull him out of me or he would not have lived. When we were released from the hospital three days later, we were at home for almost a full 12 hours before we were back at the same hospital’s emergency room. Benjamin had developed a high fever. The pediatric team tested him, and due to a lab error, decided he had spinal meningitis. He was administered a barrage of antibiotics via IVs in his hands, feet and head, but his little veins kept closing, so it was suggested that he be put under anesthesia and have a central line inserted through his inner thigh. He was 6 days old. Ultimately, we were admitted for eight days. The doctors finally came to us and said he was fine and that we could go home. Benjamin had no fever, no conclusive labs, nothing. I thought I knew what relief felt like, but it was at this moment that I learned I had been wrong. Now, I knew relief. Through all of the pain that the month of September 2002 had brought into our lives, we were finally going home to heal and to learn what it meant to be a family. This was our first new day: It was a time that we were hopeful that healing would come to us all and a happy, if not always easy, life would follow.
Benjamin hit all his developmental milestones, including walking at 10 months old. As any parents would say, we were amazed daily. Our dogs were his first best friends. I swore his first word would be bark. He started to talk—first, the normal babble and squeals, followed by monosyllabic words like da and ma, then more complex words like Dada, Mama, uh-ee (uh-oh!), oopy day (oopsy daisy) and a few others. Overall, he learned about a dozen words. We decided to have another child—my body was failing me in many ways, and I was told that to fix my problems, I would require some reconstructive surgery. If we wanted another child, that had to come first and soon.
We started trying to have another baby right away. I became pregnant almost immediately, and we joked of my immense fertility—as I had conceived Benjamin while on the pill (yes, that .04 percent is a reality). Born to us was the hope of growing our family and sharing our love with another amazing little person, but in June 2003, I miscarried. We moved on and stayed hopeful. In September 2003, I miscarried again. In December 2003, I miscarried on Christmas Day. Our bright hope turned to dimming light in our hearts. In January 2004, we saw a fertility specialist and began multiple tests. We learned that fertility was not our problem, but maintaining a pregnancy seemed to be the issue. We were given a regimen to follow that included our attempting to conceive and my taking synthetic progesterone the moment my cycle was late. It worked. Finally! We were going to have our second child, also a boy, who we would name Cooper. Benjamin would have a little brother, our family would be as we had hoped, and I would then have surgery to start repairing my broken body. Pregnancy with Cooper was hard. I was sick for the first five months, lost weight instead of gained, and then suddenly was fine and packed on the pounds. All told, we were ecstatic.
In October 2004, when I was 8 months pregnant, Benjamin stopped talking. He stopped looking at and responding to us. He stopped playing with his toys. He just stopped. It was gradual, though, so we didn’t notice immediately. Our pediatrician said this was typical for boys, and with Cooper joining our household, we should expect this regression. He insisted we stand firm when Benjamin challenged us. He attributed some of the regression to the fact that Benjamin had been frequently ill with ear infections, croup, colds and various viruses throughout his toddlerhood, and shared with us that these circumstances often played a role in regression. He pointed out to us that Benjamin was always treated for his ills and always recovered quickly. This regression was to be expected. Call him in January or February if we still had concerns. We trusted him. We were first-time parents and did not know there were other questions to ask. (Word to the wise: If you are concerned about your child, ask more questions. See another doctor. Do whatever it takes to get the answers you are seeking.)
Between October 2004 and January 2005, Benjamin started humming. He hummed constantly. He started spinning things, mouthing things, perseverating with his toys, and behaving oddly and repetitively. He started to take our hand and lead us to food, drinks, objects—things he wanted or needed help with. He grunted, screamed and cried instead of using words. Because he seemed to have lost the ability to communicate his most simple needs, hunger or thirst, he grew frustrated and angry and would hurt himself by throwing himself to the ground headfirst, banging his head on the walls, and hitting himself with his toys. We became targets when we couldn’t understand what he wanted from us, and he would use his body against us, ramming into us with his head, scratching and tearing at us, and pulling our hair. We became desperate in trying to understand what he wanted and needed, trying to help him find his words, to gain his attention, to get him to respond to us, and to get him to simply look at us. But we couldn’t. It seemed he was lost to us. Our doctor, though, had told us to hold fast and firm, to expect this, and to persevere. We tried.
At the end of January 2005, Autism Speaks was formed and ran several documentaries about autism on NBC. We watched out of interest, not concern. While watching the first program, I startled, then fear took hold and I began to cry. By the end, I knew something my doctor was unable to identify. I was watching my son on that television screen. I knew Benjamin had autism before anyone else had to tell me.
While Benjamin was not formally diagnosed until late 2005, we started seeking answers right away. Trey was forced to educate our pediatrician—who could have helped us six months prior had he really listened to our concerns. Eventually, we were given our first referral to see a specialist, and then were on our own. With determination and Baby Cooper in tow, I dove into this world where Benjamin had begun to spend so much time to learn how to reach and help him, as well as to help ourselves. My family was suddenly on an island feeling more alone than I can possibly explain—and we began to understand the lifelong battle that lay ahead of us.
First, we had more questions than answers: I didn’t know if my son would ever be able to talk with me, care for himself, show or feel love. I worried about Cooper being able to play with him and know his big brother, and how he’d cope growing up. I worried, selfishly, about my life and what autism meant for me and my husband. I worried and I cried and I feared. But I didn’t stop seeking answers.
With Trey in the military, his time was limited, so I became the primary voice for Benjamin, his vigorous advocate. My husband did all that he was able to while still working to meet his obligations to the Navy. He served a tour at the Pentagon as we entered this phase of our journey, and it was the most challenging tour for him yet. His time was highly structured; he was on duty more than he was home. We hired an au pair because I needed help. I couldn’t work full-time, care for the boys and myself, and advocate for Benjamin without more help. I felt like a single mom—my husband wandered in chronic fatigue in and out of our home. He was there when he had to be, though, and as difficult as it was, he made some amazing things happen. He is a wonderful father.
We started working with the school system. I researched hospitals, therapies and treatments, including biomedical, speech and language, occupational, physical and behavioral. I joined the queue of thousands in getting on the list for every service, therapy, program and voucher available. I completed applications and sat through interviews for every program available through the state and federal government. We watched, in disbelief and awe, as our savings faded away and our insurance carrier fought us at every turn. Through an act of fate, we discovered Kennedy Krieger Institute (KKI), one of the foremost and respected autism treatment and research facilities in the country. It was located in Baltimore, an hour from where we lived. We got on their wait list, too, but were told not to expect to be called to schedule an appointment until that fall. That meant that we might get to see a doctor in the spring of 2006, a year and a half from when we had first expressed our concern to our pediatrician. Early intervention was critical, and yet wait lists across the country were nine to 12 months long, pushing our window of opportunity to help Benjamin. We were wait-listed at five children’s hospitals within a five-hour radius of D.C. I had to be proactive. I called Kennedy Krieger daily, asking if there were any cancellations, asking if I could get that appointment. After two weeks of calling, I got an appointment in the Speech and Language Clinic at KKI due to a cancellation by someone else. I got lucky. I canceled my work appointments for the day, and Trey made himself unavailable to the Navy. We were at the clinic within two hours of getting the appointment. This is when our lives changed.
Our appointment yielded a clinical review that found Benjamin had severe speech delays, oral motor dysfunction and autism spectrum disorder symptoms. We were directed to several branches in the hospital, including developmental pediatrics, but the one that has, to date, proven to be our light was KKI’s Center for Autism and Related Disorders (CARD) REACH Research Program, Early Achievements program and Achievements Day program. We volunteered for a research study through KKI’s CARD, where Drs. Rebecca Landa and Kay Holman were researching early intervention in young children on the autism spectrum. Benjamin was thoroughly evaluated—two days’ worth of testing. He was accepted as a research participant, a fortunate match to the research group KKI was preparing to study, and he subsequently became one of five children ages 2 to 3 who were students in KKI’s Early Achievements classroom. Research was taking place behind the scenes through video, behavioral logs, observation, ongoing parent interviews, home visits and weekly parent training events. We were busy, but it meant that Ben was receiving treatment and starting to learn again. He was also being given help, albeit minimal, through our public school system. In June 2005, Benjamin began to come back to us. And in July 2005, Benjamin spoke again. It had been almost a year since he’d started to slip away.
I was putting Benjamin to bed after an extremely difficult and exhausting day, and Ben was suddenly completely present. He looked at me, into my eyes and said clearly, “Mommy’s nose, Mommy’s eyes, Mommy’s mouth” while he reached out and pointed to touch each of these features of my face. I stared back at him, frozen and overjoyed by hearing his voice. Through tears I said, “Yes! That’s right!” and that I loved him and was so proud of him. That was when he said the words I never knew if I’d hear: “I love you.” Then he was gone again, staring at the wall, humming and very effectively ignoring my presence. I didn’t care that he had echoed my own words. He had said them to me. That was what mattered.
KKI gave Benjamin back to us. Since summer 2005, Benjamin has worked more than 35-plus hours per week engaging in ABA therapy, speech and language therapy, floortime, TEACH, pivotal response and VB therapies through KKI’s Early Achievements and Achievements Day classes, the school system and our in-home private therapists. He has endured multiple attempts at biomedical treatments, testing for gluten, casein, yeast, soy and nut allergies, and trying every allergen-free diet along with multiple vitamin and antifungal treatments. For Benjamin, a “cure” wasn’t to be found biomedically through the removal of allergens, or the repair of leaky gut syndrome, or the interruption of the opiate effect—all biomedical treatments based on the premise that autism can be cured holistically. For some children, this treatment course works. I have learned that with autism, what matters is that you treat the symptoms, and either the treatment works or it doesn’t. The more traditional approaches have been what have worked for Benjamin. And so, they continue, intensively. Every day.
Benjamin has taught my husband and I what working hard really means. Cooper is starting to learn that Benjamin is different from other children, and we hope that he will be a stronger, more tolerant person because of his growing awareness and experiences. My children are my heroes, both for different reasons. My sons’ lives are very different in terms of how they experience the world. Cooper’s journey is one of a typical child, learning and growing by trial and error, challenging us at every turn as he seeks his independence and learns his abilities. Benjamin’s journey is not so typical; it has taken him down a road where for every two steps forward he takes, there are almost always a few steps back that he will have to tackle again. He has struggled with impulsiveness; violent outbursts of kicking, biting and scratching; self-injury; poor muscle tone and coordination; sensory integration issues; and a weakened immune system, and yet he continues to move forward. We continue to push him forward. He has accomplished great feats in learning to speak again, learning to look a person in the eye, to tolerate the presence and proximity of the people around him, to accept noisy places, to play with toys properly…all things he couldn’t do before. At age 6, he still cannot use the potty. He still has difficulty controlling his frustration. He still doesn’t really fathom danger. Most terrifying is that he is a “runner,” an “eloper,” and quite frankly, this is an art form for him. We deal with that each day, hour by hour, minute by minute.
But these things do not define Benjamin. What defines him is that he is a loving, intelligent little boy who loves to read stories with us at bedtime, ride his bike (just learned how!), draw, paint, color, do puzzles, hike and build, build, build. He is a master architect with wood blocks, Legos, gears—anything that he can construct with. He is learning to self-regulate in social settings, to monitor his reactions to situations that are not preferred, to cope and to live in the world at large, instead of his own, solitary one.
Benjamin started kindergarten this past fall. It was a much more difficult transition than we had anticipated. The introduction of a new routine, new teachers and peers, and a new school all were a trial for Benjamin. He experienced a violent regression. But again, he has and is still working through it. We have wonderful therapists, a great school system, and a little boy who perseveres against the very inclinations his intuition tells him to escape from. Every day is a brand-new day, and each brings a new challenge. Some days are good—and we celebrate each success. Some days are difficult—and we still find things to celebrate. And even more, some days are harder than words—and to make it through, we simply celebrate surviving the day. Most days, though, we go to sleep knowing we have done what we could do that day—our best.
As we check on our children one last time for the night before heading to sleep ourselves, we tuck them in again, kiss both of their heads and look forward to the day that will be the defining one for us: the day that research will find a cure.
Jennifer Brown is:
Jennifer Brown, M.S. Ed.
Mother of Benjamin, age 6; Cooper, age 4
Business Development Manager, America’s Choice Inc.
Autism Advocate
LinkedIn: www.linkedin.com/in/jennyannbrown
Facebook Profile: Friend of The Family Groove
Blogspot: http://chocolatechipcookiesfordinner.blogspot.com/
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