My Life As An Angel's Mommy
Okay so here it is, the best introduction for this blog can only be one that allows my readers to know who I am and what my story is, to give them a little glimpse into my life, for them to see what I believe in, what’s important to me, what occupies the most space in my life, but mainly in my heart.
My name is Jolene Walker Barlow. I am a 2003 graduate of Southeastern Louisiana University. While attending Southeastern and working towards a bachelor degree in Psychology, I began my work with children affected by autism as an in home play therapist, my responsibilities soon changed gears as I became a one on one instructor and therapist, teaching social, play, and life skills twenty five hours a week to Matthew, who was severely affected by autism. During this time I formed relationships and gained knowledge and experience that was beyond anything I had ever dreamed. Gaining the love and admiration of a child affected by autism, unwilling to be touched or hugged in previous months, was the best reward a person could have. Knowing that I had made a difference in the life of a child who most thought could not be rehabilitated was a life altering experience. I still tear up when I think of the day that Matthew hugged me and asked if he could sit on my lap, I knew then that I had done my job; and so began my passion for autism.
Above all other responsibilities and jobs, my most important title is “Mommy.” No matter how much work experience or education I had received, nothing could prepare me for the birth of my daughter Annastacia and her eventual diagnosis of autism. In July 2002, God blessed me with an angel, but I never could have imagined how my life would be changed by the tiny helpless baby that I held in my arms that day. As a new mother, I was oblivious to the unending responsibilities of motherhood, though I believed that I could take on the world and had a self-deceit that I was strong enough to handle everything that could be thrown at me. Despite the fact that I had read the books and asked all the questions I could imagine, I never asked the questions that no parent wants to ponder, “What do I do if my child is sick?”, “What if she isn’t reaching her milestones?”, and most importantly, “How do I handle the things that every parent fears the most? How do I respond to knowing that the dreams that I had for my child were actually false hope, knowing that she won’t grow up and go to college, knowing that I may never see her walk down the aisle or even see her be able to live independently?” It breaks my heart and it is very difficult to fight back the tears when I revisit this grief that I have over the monster that has taken my child’s dreams and aspirations away. This monster called autism. I have never been angry and never asked God “Why me?”, but I hurt, no hurt isn’t even the right word, my heart aches, it has a physical pain that literally overwhelms me and takes my breath away, a pain that no parent should ever feel, a pain that reminds me that autism has stolen my hopes and dreams for my daughter and replaced them with tears and anxiety.
I wasn’t prepared physically, emotionally, mentally, or financially to care for a sick child, but soon after Annastacia was born, I learned to cope with all of my deficits in these areas. On my due date, my doctor informed me that Annastacia had not grown in four weeks and that she was at risk of being still born. The doctors induced labor immediately and after twelve hours of intense, Pitocin induced labor, Annastacia was delivered under emergency conditions because her heart had stopped beating during labor. My biggest fear at that moment was losing this little girl that I had impatiently waited nine months to meet, a heart wrenching fear that I may lose her before ever getting a chance to hold her in my arms. This was the first time that I ever stopped and realized that there could be a chance that the plans I had subconsciously made for her may never come to fruition. This was just the beginning of Annastacia’s many medical problems as an infant, the range was broad including jaundice at two days old, her first hospital stay at two weeks old, diagnosed as failure to thrive at two and a half months, and an uncountable number of hospital stays due to digestive issues, infections, viruses, and dehydration during her first two years of life. During this time I was a college student and my husband was working to support our small family, with no other option, we sought medical coverage for Annastacia through the Louisiana Medicaid program. Despite the fact that Annastacia remained sick throughout her infancy, I kept up with her vaccination schedule, as not only recommended by her doctor, but also mandated by Louisiana Medicaid regulations. Shortly after her first MMR vaccination, she stopped talking and displayed many regressions both physically and neurologically. My little angel stopped calling me “Mommy”, she stopped squealing “Daddy” when my husband returned home from work, and she stopped delightfully asserting, “I’m beautiful!” Not only did she lose all of these wonderful exclamations, she lost her ability to sit up on her own, and no longer tried to pull up on the couch. We sought answers through visits to neurologists, metabolic specialists, endocrinologists, gastroenterologists, and geneticists. Doctors did not have any answers and did not have much to offer with regards to hope, other than unrelenting blood tests that did not give any definite answers. Her diagnosis at this point was gross developmental delay, although I later learned that this is not a diagnosis, it is merely a symptom of a diagnosis. This time was frustrating and physically, mentally, and emotionally draining. In my mind, I knew there was something wrong, although my heart never wanted to accept that concept. My experience and education had provided me with knowledge that was easily used to help other children, but this knowledge seemed to be absent when I was assessing my own child (after all, a mother sees her child only with her heart and not with her eyes or her mind). I also met opposition from family members who accusingly asked me why I would want the doctors to say something was wrong with my daughter. Regardless of the fact that my heart was hurting, I was soon able to surpass the beginning stage of grief, the stage of denial and move on to acceptance. I recognized the fact that I had to accept the idea that Annastacia was not a typical child, if I ever wanted to help her. I knew that I had to seek and find a diagnosis so I would know how to help her. This acceptance was difficult and I found myself withdrawing socially, I experienced feelings of resentment towards my friends and their typical children. I felt disgusted each time I heard them talk about the milestones their children were reaching, knowing that even without a diagnosis, my little angel may never compare to her peers.
Fast forward three years, with lots of speech, physical, and occupational therapy and one on one instruction from a special education teacher through the Early Steps program, Annastacia was growing and making great strides in her development. It was at this point that I continued Annastacia on her scheduled vaccines; she received her second MMR vaccine at four years old. Annastacia then lost all eye contact and stopped responding to her name. With no other choice I started a mission to find answers and after many misdiagnoses, endless dead end streets, much frustration, pain, and tears, we received a diagnosis of autism in May 2007. By this time, I had accepted that Annastacia was not a typical child, and I knew not only in my mind but also in my heart that autism was the monster that would taunt me and haunt me for the rest of my life. The neurologist told me that early intervention was key and to get her as much therapy as possible. I enrolled Annastacia in our local early intervention program and continued therapies in the hospital/private setting. Applied behavior analysis, the only scientifically proven method of teaching children with autism, was not an option for us at this point due to costs, so I did everything I could to help her at home. Despite the fact that I had once thought that I could not have dreams or set goals for Annastacia, I simply had to understand that the dreams and goals that I had for her were changing. Her accomplishments became reasons for celebration, moments of utter joy and excitement replaced the previous feelings of anxiety and thoughts of failure, before I had felt that I was failing her as a Mommy. I came to realize that I had never failed her; I just had to get on the right path, the path that God had put us on together. I had to face the fact that this was a journey and I was travelling on unknown streets that had potholes and dark alleys; but, the reality is this path has a sun that shines brighter, the grass is still green, and flowers still bloom, sometimes they just bloom in unexpected weather or even in an unexpected season.
Annastacia continues to be extremely delayed compared to her typical peers. She has the expressive language of a two year old. She is not capable of dressing herself without assistance and academically she was in kindergarten three times and is now in first grade at age 9. She cannot write her name or complete many of the simple kindergarten tasks without hand over hand assistance. Annastacia has meltdowns and wanders away from our family when in public places. She must be supervised at all times, because she does not understand the dangers that surround her (she can’t cross the street without holding my hand, has no fear of water even though she cannot swim, and has no fear of heights or falling). Annastacia has no way to communicate to my husband and I if someone was to hurt her and it is very difficult for her to express her wants and needs. My biggest fear is her getting lost, of course every parent fears there child being lost, but my fear is titanic in proportion to the fear a parent has regarding a typical child. Annastacia can’t say her name, she can’t tell anyone who her parents are, she doesn’t know our phone number, or address, or even how to communicate to someone that she has autism. Due to Annastacia’s speech delay we also have to be very particular about the people we have caring for Annastacia. Annastacia has never experienced a sleepover at a friend’s house, as most typical 9 year olds have already experienced several times. We have to plan far in advance for one of Annastacia’s grandmothers to watch her. I worry that my mother and mother-in-law are aging and that there will be no other capable, willing person to care for Annastacia while I work.
On the bright side Annastacia is truly a blessing from God. She is a loving, beautiful little girl who desperately wants to express herself. Unlike many children with classic autism Annastacia seeks affection and wants to give affection to me, her Daddy, and her brother and sister. Yes, she has a younger brother and a younger sister, and as it is in this letter, it is often the same in our life; the focus is many times solely on Annastacia. Our lives revolve around therapy and sports schedules. I know that our family needs balance. I do my very best to create a loving environment for all three of my children, but it is often difficult to explain to her siblings why Annastacia gets treated a little different than they do. Annastacia is always included in everything we do, if she is not able to participate, no one does. It may seem a bit constrictive, but I never want Annastacia to feel different or left out. Annastacia is blessed to have Jasmine and Nicholas as her siblings, they love her unconditionally, are understanding towards her, even in the midst of a full blown meltdown, and most impressive, they defend her, attempt to explain autism to their peers and openly tell others that they love their sister despite her autism, because “that is the way God made her.” I can’t imagine my life without Annastacia. Her smile brightens my days. The love that I receive from her is the best gift God could have ever blessed me with. I now that life with a child affected by autism is tough, there is no way to deny that, especially when you stop and let the monster eat away at you, but honestly I wouldn’t trade this life for any other one. I don’t think it would be possible for me to ever love Annastacia more than I already do, I sometimes believe that I have such an intense love for Annastacia because of her autism, not in spite of it. The burden of autism is enormous, but the reward for loving, providing for, and accepting a child with autism is unsurpassable. Annastacia is my blessing; I have never and will never view her as a burden. I believe in the quote by Mother Teresa that says, “I know God will not give me anything I can't handle. I just wish He didn't trust me so much.” I realize that God has entrusted me with the care and handling of one of his most precious souls, and I feel blessed to be her Mommy.