|Brianna pictured with her Special Needs Coach|
We have all envisioned our idea of what a hero should be. This might include a celebrity, a parent, a comic book character, or whatever our imagination conjures up. This individual becomes the center of inspiration for our life and gives us a guide line to follow. My hero happens to be a seven year old little girl. Her name is Brianna Susan Williams and she is my daughter. She was diagnosed at the age of 3 as Autistic and I have watched and shared with her the struggles she has had to endure on a day to day basis.What is Autism you might ask? If you had asked me that a few years ago, I would have given you the same blank, confused look that I have encountered many times since my daughter’s diagnosis. Medically put, it is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. It is set by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and in varying degrees. The list for such behaviors would fill a book and therefore would take me hours to explain. Let me just share a few examples. Not responding to one’s name, unresponsive to senses such as pain, temperatures, danger, etc., and many other unusual responses. Confused yet? There are so many definitions out there to explain this diagnosis that my daughter’s doctor actually put it in even simpler terms. She said “We just do not know. It’s a category we put these children in simply because they don’t fit anywhere else.” No wonder the puzzle piece is the symbol for this unique disorder. This leads to another very important question. Are there any warning signs? The answer is yes, although some of the signs may not be apparent at first and differ with each child since there are such a huge variety of levels involved. With a desire to help other’s get an early diagnosis, I felt the need to share Brianna’s story.
On January 19, 2005, I become a mother for the first time to the most beautiful little girl God ever created. I may just be a little biased in that area. She was perfect and never seemed to cry about anything unless it was the usual wet diaper or hunger pains for her next meal. For the first couple of months, she was so content. Nothing seemed to bother her and she was a complete angel. Time cannot remain still however, and things slowly began to take a turn…warning bells started to ring…. at a very slow pace….Brianna began to react badly to her formula. She was constantly throwing up. And I don’t mean a little spit up here and there. She could have competed with the biggest, geyser flowing volcano around and would without a doubt, won the gold medal. This makes sense now since many Autistic children have bad digestive systems. They aren’t always able to process foods the same way as “typical” or “normal” individuals have the ability to do.
Other milestones seemed right on track. Her first words were “momma”, and “dadda.” She began walking a little over a year. Other signs however, should have caught my eye and would have had she not been my first child. She seemed unusually quiet and never seemed to mind being by herself. The mechanics of her baby toys seemed to fascinate her to no end and continued to do so. She could have cared less about the toy itself and was more interested in how the toy operated or how it was put together.I never took the time to worry about whether or not this particular behavior was a little odd. In fact, her Pediatricians were so pleased with her development that I just thought I might have some genius kid that would out smart everyone. After my son was born; however, I had my first inkling that something was amiss. She reacted very badly to her new brother coming home. Jealousy is to be expected but hers was a little out of sort. She didn’t want to comprehend that she had a brother and even tried sitting on him and a few other tricks to make him invisible to her world. Her speech had come to a stop. At least I thought it had. Looking back, I think my mind finally started to target in on the fact that she could use words but I had to admit to myself that her vocabulary should have been on a larger scale. She only spoke when mimicking something she heard on a cartoon or from someone. I started to feel sick when it suddenly hit me that truthfully the only time I had actually heard her put more than two words together occurred when she was singing a song. I shrugged it off and attributed it to the fact that she was my first child and really hadn’t had many young kids to play with so her language just hadn’t had time to progress.
Then the illnesses started. She began getting an amazing amount of ear infections. In fact, she was sickly so often that she was put on an antibiotic at least once, sometimes even twice a month. It was an ungodly amount. Her doctors never voiced a concern which seemed strange to me. I once got the courage to ask if maybe something deeper was wrong since it seemed completely odd that she couldn’t shake the sickness or ear infections. Their response was always the same. “Oh she just seems to be one of those unlucky few to suffer from bad allergies.” At the time we were living in the mountains of Pine Mountain, Georgia so I played it off to the possibility that it might be the elevation at which we were living.All of a sudden, Brianna stopped sleeping. She started having horrific night terrors where she would scream and kick violently in her sleep. It would take everything we had to make it through the night. By morning, I would be in tears right along with her and sigh in relief when she would finally collapse in a peaceful sleep.
I began working again and for the first time in a while, she entered into daycare. The teachers praised my son’s intelligence and his ability to learn new things but they presented me with concerns involving Brianna. She would not play with the other children. In fact, she preferred to stay completely to herself. It didn’t seem to bother her at all to be alone. This is where I got my first mention of the word Autism. My mother-in-law at the time came to me one day after doing some research on the subject and said she thought Brianna fit in with some of the symptoms associated with the disorder. I wasn’t actually sure what Autism was and I went into mommy defense mode. I completely blew up at her for saying such a thing about my perfect little girl. I was in complete denial. In secret; however, my research had begun.For personal reasons, my now ex- husband and I separated and the kids and I moved home to Mississippi to be closer to my family. Teachers at my daughter’s new daycare voiced the same concerns as her old teachers. Brianna started picking up more abnormal behavior such as spinning for a good hour without so much as pausing, flapping her hands up and down when happy or excited, and sitting by herself and making noises rather than talking. I dubbed her flapping hands as her angel wings and still did not want to admit there was a problem.
Then one afternoon, not long after she turned 3, I realized denial was no longer an option. It hit me like a ton of bricks and my eyes suddenly opened up. Brianna would not respond to her name, she could not follow simple commands, and she only used words when mimicking. She had an incredible memory. She could watch or hear something and repeat it word for word a few days later. Other than this unique oddity, she only communicated with noises or hand gestures. Sleep had become non-existent. She simply didn’t need it. Emotionally and physically wore out, I called a new pediatrician and took her in for an appointment. After a few minutes of talking to the doctor, she got quiet. She immediately referred me to Jackson and set Brianna up for an evaluation.This began a series of trips to UMC hospital in Jackson. Her first evaluation was so heartbreaking. They would ask her the simplest commands and she just didn’t seem to comprehend it. It took every bit of energy I had not to stand up and sit where she was sitting and just do the work for her.
It didn’t take long to get the results. All I could see was one word on the page that overshadowed everything else: AUTISM and Developmentally Delayed. I went home and cried. I cried for what seemed like hours. Brianna came into the room, plopped down in my lap and started flapping her angel wings. She threw her arms around me in the biggest hug she could muster up. I felt so ashamed. I was sitting there feeling sorry for myself and here she had to live it. I hugged her back and promised her we would find some answers.Trips to Jackson increased. We were making the drive about every other week. In the end, they just listed some therapies that might help her such as speech and sent us home. I could not believe that was all we were given. It was as if they were saying you have a child that is unusual, here is some therapy to possibly help, and we will see you every six months to evaluate her again. That was the first day I came to the realization that we, the parents, have to become the doctors in this area.
I enrolled her in a Special Ed program two days a week at South Jones Elementary and Speech Therapy two days a week. Progress was there but only in small areas. I put her on the waiting list at Dubard which she still sits on today. I started to realize that if I wanted my child to have a chance at being independent, then I was going to have to place myself as a doctor and teacher of a sort. My research increased and I threw myself into any information I could gain. I started to learn things that shocked me and new therapies that gave me some hope. I started slowly and am still learning and implementing new ideas into her lessons.She is now 7 years old and still continues schooling, Speech Therapy, and Occupational Therapy. She is in first grade special education this year and will go to public school unless Dubard offers her a spot in their program. She can now put two word commands together and some of her language is starting to grow after doing some new research and trying to implement new things at home. She has still not yet conquered the potty which continues to be an ongoing battle. She can put her shoes on and take her clothes off but getting her clothing on continues to be a challenge. She still uses the mimicking method and using noises to communicate. Remember growing up and someone playing the copycat game on you? Imagine living with a child that does this every day, all day long. She still flaps her “angel wings” and continues to spin or spin objects which is one of her favorite pastimes. Doctors label this “stimming” which just means this is their way of stimulating themselves. Finding other outlets for stimulation sometimes helps to diminish this slightly.
In a nutshell, this is the reason why I label her my hero. Autism is a disorder that takes many forms. Brianna just happens to be at a more severe level or in the middle range…to be honest, it’s hard to say exactly where on the spectrum she belongs but as a result she has not progessed as quickly as I hoped and prayed for. There are so many beliefs as to how Autism is caused. Everything is argued over from vaccinations to environmental issues. Here are a few points I would like to share about what I have learned. Autistic children are supposedly standoffish and not very loving individuals. Brianna absolutely adores giving hugs and kisses and I have discovered after research that it’s not actually unusual for a lot of them to be loving children. They look just like you and I but due to unusual behaviors are often frowned upon when in public as if they are unruly children. I have watched her experience prejudice on a day to day basis and yet she still smiles and hugs even those that want her to remain as far away as possible. I don’t think they mean to, they are just scared of what they don’t understand. It’s sadly a disorder that is not widely known although each year it’s becoming more so. April is Autism Awareness month and it amazes me how many people do not know this. It tends to get overlooked in the scheme of things and by bigger health issues lurking out there, but unfortunately this disorder is growing. I’m hoping we can educate other’s by sharing this information. Let this number scare you…about 1 out of 88 children are being diagnosed with Autism (please note these numbers change constanstly so know this number may have even changed since writing this). That’s pretty profound, don’t you think? Next time someone asks, “What is Autism?” “I know I’ve heard that somewhere.” Refer them to this article or just tell them to google it online. There are huge arrays of websites out there concerning it.So let’s sum it up. My hero is a 7 year old Autistic girl. Her name is Brianna Williams. She is loving, loves music, has an obsession with water (I think she would live in it if I’d let her), loves collecting empty containers, adores hugs and kisses, is a monkey for banana’s, and loves to laugh. She is a girl of few words but makes up for them in more ways than one. I believe there are angels in this world that are sent to watch over us or just to give us a guiding hand. I also believe there are angels on earth sent to teach us a lesson or to touch us in some profound way. I truly believe my little angel is one of them. That makes her the biggest hero of all. I am only a parent determined to see her daughter have a bright future. So, until then, my sweet girl, spread your angel wings and fly, mommy promises to catch you when you fall.