tag:blogger.com,1999:blog-79971737140414847522024-03-08T03:34:05.147-08:00Hot Mess to Super MomAnonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-7997173714041484752.post-32075988177183942592018-10-15T05:59:00.000-07:002018-10-15T05:59:30.514-07:00How Therapeutic Horseback Riding Empowered My Disabled Daughter <div class="separator" style="clear: both; text-align: center;">
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<span style="-webkit-font-kerning: none;"><span style="font-size: large;">When Alyssa sat on Casper’s back, the giant horse seemed to become hyper-aware of her presence and remained perfectly still. As the riding aides began to coax him out into the arena, Casper’s careful movement reflected the respect and admiration he had for my disabled daughter who proudly adorned his back. The mere sight of such as small and seemingly fragile child riding gracefully on a huge animal in comparison can be a bit perplexing for those witnessing the act for the first time. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Casper elegantly walked around the arena with the assistance of volunteers on either side and one leading the way. He maneuvered in and out of obstacles, stopping and starting on command. Alyssa maintained perfect posture with her arms stretched out, grasping the reigns and Casper’s mane at times. Her legs spread loosely over the width of Casper as she rode bareback. Her confidence and riding skills were clearly on display. She was in charge and Casper graciously obliged. </span></span></div>
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<span style="font-size: large;"><span style="font-kerning: none;">Alyssa remained perfectly calm for the full duration of the class. The only time she became agitated was when Casper stopped. She longed for the motion and stride, for they gave her confidence in her abilities</span>—<span style="font-kerning: none;">something she lacked outside of the arena. The serene setting of the open atmosphere on a beautiful fall day was the perfect opportunity for Alyssa to become the master of her domain. For those precious minutes spent riding her horse, Alyssa was no longer disabled. Her legs became one with Casper as he stepped for her. Alyssa’s non-verbal barriers disappeared. Her voice was heard through her body language as she guided Casper forward. She has gained much more than expected through horseback riding</span>—<span style="font-kerning: none;">her voice, her ability to walk, and her ability to have authority over her existence. In those moments, she was as free as a bird flying through the glorious wide-open unknown. </span></span></div>
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<span style="font-size: large;">When Alyssa started therapeutic horseback riding two years ago, we never imagined how much she would benefit from the experience. We were hesitant at first to have our tiny four-year old ride such a large animal. She quickly became comfortable with Casper, which helped to ease our minds. At that time, she rode with a full back supported seat. When she graduated to bareback, she still lacked the proper strength needed to sit up fully the entire duration. She would lean forward, with rigid legs that tightly clenched Casper’s back. The improvement she has made since that first semester is astronomical, especially considering all that she has been through. </span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Alyssa has faced many physical challenges and setbacks over the span of her horseback riding career. Two years ago, Alyssa had bi-lateral hip reconstructive surgery to correct hip dysplasia (dislocation). Her bones were cut and placed back into the sockets, held together by hardware (screws and metal plates) for one year as the bones healed. The surgery and recovery emotionally and physically drained Alyssa. Despite her pain and discomfort, she continued to ride, as it was necessary for her recovery. Alyssa’s resilient spirit continues to shine through as bright and beautiful as the Northern Lights. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Alyssa’s therapeutic horseback riding class is provided through Mississippi State University’s Extension Equine Assisted Therapy Program in West Point, MS at the 4-H Elizabeth A. Howard arena. The arena was donated by Tommy and Brenda Howard, and it is on property donated by Jimmy Bryan. The program has earned premier accreditation status through PATH International (Professional Association of Therapeutic Horsemanship), and serves children with developmental disabilities, autism, down syndrome, ADHD, and other conditions. There is also a veterans-focused program available, which provides much-needed emotional support to veterans in the area.</span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Alyssa’s riding instructor, Lori Irvin, spoke to the Starkville Rotary Club about the importance of the program. She said that through the program, students learn to care for and ride horses. According to Irvin, that interaction helps with learning empathy and creates a passion for animals. From that, she said, students can build self-confidence. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">“We're trying to incorporate their learning goals. Social skills, motor skills, balance, coordination,” said Irvin. “A horse stimulates your nervous system something like 60,000 times a minute. There's no way that can be replicated in any other kind of setting.” </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Irvin believes the horses have a healing power, and I couldn’t agree more!</span></span></div>
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<span style="font-kerning: none;"><b><span style="font-size: large;">What are the Benefits of Therapeutic Horseback Riding?</span></b></span></div>
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<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Improves balance, motor coordination and self-assurance while receiving therapeutic muscle stimulation. </span></span></li>
<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Improves posture, core strengthening and flexibility. </span></span></li>
<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Improves fine and gross motor skills. </span></span></li>
<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Improves teamwork and cooperation as the riders become more independent on the horse. </span></span></li>
<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Develops and Improves social skills.</span></span></li>
<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Establishes a strong sense of responsibility as the riders learn to take part in the care of the horses and the equipment. </span></span></li>
<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Classes, horse shows and events encourage confidence, self-esteem and a sense of accomplishment as new levels of ability and goals are met. </span></span></li>
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<span style="font-kerning: none;"><b><span style="font-size: large;">Who Benefits from Therapeutic Horseback Riding?</span></b></span></div>
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<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Individuals with muscular disorders such as hypertonia, hypotonia, multiple sclerosis, cerebral palsy, and muscular atrophy.</span></span></li>
<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Individuals with developmental disabilities, cognitive impairment, and learning disabilities. </span></span></li>
<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Individuals with sensory impairment such as vision and hearing impairment, dyspraxia, and sensory integration/processing dysfunction. </span></span></li>
<li style="font-family: Helvetica; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-kerning: none;"><span style="font-size: large;">Individuals with PTSD, traumatic brain injury, and mental health disorder.</span></span></li>
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<span style="font-kerning: none;"><span style="font-size: large;">To learn more about the MSU Extension Equine Assisted Therapy Program, visits their website: http://extension.msstate.edu/family/equine-assisted-therapy-programs</span></span></div>
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Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com1tag:blogger.com,1999:blog-7997173714041484752.post-65955993626206265952018-10-02T12:37:00.000-07:002018-10-03T08:07:54.579-07:00Turning My Novel Writing Dream Into Reality<div style="font-family: arial; font-stretch: normal; line-height: normal;">
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<span style="font-size: large;">Writing has always been my passion. It is the one thing I have known without a doubt that I am meant to do with my life. For me, there’s something freeing about writing. It gives me an escape and a much-needed break from reality. It allows me to have full control over the story that I am orchestrating. I am the creator—the inventor of my world. It is a fulfillment unlike no other.</span></div>
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<span style="font-kerning: none; font-size: large;">I have been drawn to writing since I was a child—creating stories before I could even spell. I have always had a love for words, books, and creative expression. My most prized possession growing up was my vintage typewriter. I loved the sound the keys made as they stamped the paper, spelling out the words inside my head. I can still remember my first short story about a young private eye who craved mischief and adventure. I lived inside Carmen’s world and found excitement in telling her story. </span></div>
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<span style="font-kerning: none; font-size: large;">As I got older, my writing style changed. I became more interested in a journalistic approach to storytelling. I was determined to keep writing even when there was no platform for my expression. I had initiative and ambition that allowed me to create publications for the schools I attended. In middle school, I started a newsletter that included features, poems, interviews, and news articles. I remember the joy I got from laying out the pages and feeling proud that I had created something people were reading. In high school, I continued to break barriers by starting the school’s first newspaper. I found validation in my passion and knew without a doubt writing would be my chosen career path.</span></div>
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<span style="font-size: large;">My love for writing and creation is what paid my way through college. I received scholarships for the four years I worked as yearbook editor. Those years are what allowed me to branch out more creatively. As the editor, I was in charge of the overall development of a large-scale publication. I quickly grew to love photography, graphic design, pay layout, managing a staff, and meeting strict deadlines. I enjoyed the challenge and energy that came along with being an editor. </span></div>
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<span style="font-kerning: none; font-size: large;">My first “real” job after college was as a newspaper reporter for a daily publication. I thrived in the fast pace environment. I liked being able to write engaging pieces that people were actually reading and enjoying. I soon found that I was drawn to feature writing much more than hard news stories. However, the skills I learned that year were invaluable and are still implemented to this day. My remaining professional years were spent working in public relations at a community college. I wrote press releases and promotional pieces, designed publications, and assisted students working on the yearbook. It was my dream job at the time because it allowed me to do everything I enjoyed.</span></div>
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<span style="font-kerning: none; font-size: large;">Without any warning, life can send you curveballs that completely derail you from the path you were destined to lead. It happened to me just as I was starting to take off in my career. I was living the life I always imagined, but life had other plans. Having a child born with multiple disabilities took precedence over any personal ambitions or dreams I had. I chose to sacrifice everything for my daughter, and I will never regret that decision. Giving her my full attention and ensuring she has access to every available therapy, school and resource is my new job—one that I will continue to have for the rest of my life. </span></div>
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<span style="font-kerning: none; font-size: large;">During those early years, I took to journaling as a way to release my innermost thoughts. It was therapeutic and enlightening for me. That is where I spoke the words I could never say aloud. It was my saving grace. Blogging has also become a creative outlet for me over the past few years. It allows me to tell our story and raise awareness, while also giving me the opportunity to feel some sense of purpose and meaning. </span></div>
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<span style="font-kerning: none; font-size: large;">I have been giving a lot of thought to what I want to do next with my writing. While blogging has been my primary creative outlet, lately I feel as though I am being pulled in a different direction. I have reached a turning point in my writing pursuit to where I am finally ready to embark on my long-awaited dream of publishing a novel. I want to hold my book in my hands and feel the joy that comes from knowing I gave life to what was once thoughts inside my mind. I want to have something greater than myself that I can share with the world for years to come. I want my children to be proud of me and see me living my dreams. </span></div>
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<span style="font-kerning: none; font-size: large;">I plan to participate in this year’s NaNoWriMo (National Novel Writing Month). NaNoWriMo is the catalyst many aspiring and seasoned writers use to jumpstart their creative process. During the entire month of November, writers from all over the world collectively attempt to write 50,000 words toward any project of their choosing. It is a great opportunity for writers who want to be challenged and quickly write the first draft of their manuscripts. It is also a great way for writers to become a part of a community that is engaging and supportive. </span><br />
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<span style="font-kerning: none; font-size: large;">I knew about NaNoWriMo from friends who have participated, but it wasn’t until I had an idea for a book that I made the decision to become a participant. The thought of committing to writing 1,667 words every day for 30 days is both frightening and exhilarating. I want to push myself to new limits and step outside my comfort zone. I have never written that much in such a short amount of time. I usually critique my writing every sentence and paragraph as they are written. NaNoWriMo will force me to stop overthinking my creative process and simply put pen to paper; getting my story written—no matter the outcome. </span></div>
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<span style="font-kerning: none; font-size: large;">Some writers use October to plan out their novels (plansters), while others choose to fly by the seat of their pants and wing it (pantsers). My background makes me a planner by nature. I plan to have an outline before embarking on NaNoWriMo next month. I believe having a clear picture in my head of how I want my story to unfold will help me write more effectively and make the editing process smoother. How much of the story I will have planned out is yet to be determined. </span></div>
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<span style="font-kerning: none; font-size: large;">The idea for my novel came from a conversation my husband and I had about what would happen to our disabled daughter when we both pass away. This is a conversation all special needs parents dread but is inevitable. I know I am taking a risk with this topic because of its nature. Death and its ramifications</span><span style="font-size: large;">—</span><span style="font-size: large;">especially in the special needs community</span><span style="font-size: large;">—</span><span style="font-size: large;">is not a topic that is widely discussed. However, I want to write about something that not only means a great deal to me but has a significant impact on society as a whole. I have always been the voice for my daughter who cannot speak for herself. It is through those experiences and lessons that I feel the need to be the voice of a greater population and tell their stories in a way that is rarely told. </span></div>
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<span style="font-kerning: none; font-size: large;"><i><br /></i></span> <span style="font-kerning: none; font-size: large;">Life was finally starting to make sense for Eason Davenport. He had spent his youth living in the shadow of his disabled twin sister, Savannah. Going away to college allowed him to finally step into his own identity and be known as more than just Savannah's brother. </span></div>
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<span style="font-kerning: none; font-size: large;">He loved his sister unconditionally and had sworn to protect her and care for her no matter what, but he never understood the full extent of those promises until faced with them head-on.</span><br />
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<span style="font-kerning: none; font-size: large;">As Fall began, Eason's world was turned upside down. With the death of his parents, Eason had to decide Savannah's fate. What followed was a series of events that would forever change their lives. </span></div>
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<span style="font-kerning: none; font-size: large;">Was he ready to become Savannah’s guardian and caregiver? Was he mature enough to handle that sort of responsibility; and what would that mean for his future plans? Was it fair to expect him to take on that role? These were all questions Eason had to face alone—or so he thought. </span></div>
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<span style="font-kerning: none; font-size: large;"><i>My Sister's Protector</i> gives a refreshing inside look into the world of a special needs family—a dynamic that is rarely represented in literature. It shines a light on topics facing real-life families in similar situations and gives a voice to the underserved. This coming-of-age story centers on a brother facing an unimaginable situation. How he chooses to proceed will affect not only his life but the life of the one he loves the most. Come along for the journey; and be ready to experience a plethora of emotions that will leave you longing for more. </span></div>
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Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com0tag:blogger.com,1999:blog-7997173714041484752.post-18729861870850871352018-09-26T13:38:00.000-07:002018-09-26T15:22:17.379-07:00Alyssa's Journey with CVI<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz6odrDBvepaz8ZxB4pBQqMgfW8FJLalwG_FMIvADKMGl7NpjTvSssAGoSvXv25_GxHr6iX2PiBN7ypU7dcrIb7q_k5O4uRoRg8ALTDba_8cD4E-70_3H0L0Nt7q-3TNXbvev-_1arOwbQ/s1600/AlyssaCVIJourney.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz6odrDBvepaz8ZxB4pBQqMgfW8FJLalwG_FMIvADKMGl7NpjTvSssAGoSvXv25_GxHr6iX2PiBN7ypU7dcrIb7q_k5O4uRoRg8ALTDba_8cD4E-70_3H0L0Nt7q-3TNXbvev-_1arOwbQ/s400/AlyssaCVIJourney.jpeg" width="400" /></a></div>
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<span style="-webkit-font-kerning: none;"><span style="font-size: large;">A mother’s intuition can be very powerful and kick in the first moment she lays eyes on her newborn. It was within the first few moments of meeting my daughter that I knew in my gut that something was different about her. She lacked expression and eye contact—something that could easily be written off as typical newborn behavior—but I knew there was more to it than just that. Even holding her felt different, and I felt like a horrible mom for thinking about it. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">I never expressed my concerns during those first few days because I wanted to wish it away and prove my gut wrong. I wasn’t ready to face the harsh reality of what my feelings could mean if proven right. Alyssa slept a lot those first two months, giving me a short window of time to enjoy my newborn just as she was.</span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">As Alyssa started to stay awake more, it became glaringly apparent that something was not right. Her eyes would move side to side uncontrollably. She couldn’t focus or track objects because her eyes were always in motion. She wouldn’t even respond to light. There was no more time for denial. It was clear what the next step would be, and I started preparing myself for the news to follow. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Alyssa was referred to a pediatric ophthalmologist in Jackson, MS. Dr. Mungan confirmed that she had nystagmus (involuntary eye movement) and told us it was because of vision loss. Her eyes were completely healthy, therefore the doctor said her vision loss was neurological and ordered an MRI. She was only five months old at the time. We were told by Dr. Mungan (before ever seeing the MRI results) that Alyssa was totally blind with no light perception on October 16, 2013. My world was turned upside down that day, but I refused to let it break me. I knew that now more than ever I had to be strong for her. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">The next step was getting her MRI and seeing a neurologist. On November 13, 2012, Alyssa was seen by her neurologist, Dr. Lee. He told us her MRI was abnormal and that she had cortical blindness and microcephaly. Alyssa had been misdiagnosed by her pediatric ophthalmologist (something that is very common among children with CVI). Alyssa was also diagnosed with periventricular leukomalacia (PVL) at a later MRI. PVL is a white matter deficiency in the brain that is often caused by lack of oxygen. The doctor briefly described cortical blindness. He referred to her brain as a computer and her eyes as a camera. He said the camera was working fine at collecting the images and transmitting them to the computer (brain), but there was a problem with the way the computer processed the images. His explanation made sense, but there were still so many unanswered questions. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">For a long time, it appeared Alyssa was blind. Her nystagmus seemed to slowly get better, but she still wasn’t focusing or tracking. She would not smile, laugh or look at me. She looked past me—as if I wasn’t there. That was the hardest part, as well as not seeing her show emotion. I contacted First Steps Early Intervention through the State Department of Health (go to your local Health Department and ask to speak with a First Steps caseworker). She was then evaluated to see which services (therapies) she would need. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Her vision started improving around five months old. It seemed as though she would see certain things and track, but it was never consistent. She finally started smiling and laughing at five months old, as well. As her vision improved, so did her nystagmus and head control. She finally started holding up her head after she was able to see objects better. It’s hard to explain, but it was as if her vision kicked in overnight. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">I met with a teacher for the visually impaired (TVI) in December of 2012. She was the first person to tell me about her visual impairment diagnosis. She told me that cortical blindness is more widely known as cortical visual impairment (CVI) because the children are rarely totally blind. She opened me up to a whole new world of endless possibilities. She was the first person to tell me there was hope—that my daughter COULD learn to see! That was all I needed to hear to get motivated to learn as much as I could about CVI. I spent weeks searching the internet for any and all information about CVI. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Everything I learned about CVI was translated into her different therapies. Children with CVI have very specific characteristics and learning needs. Once I knew how my daughter could see, I understood what I needed to do to improve her vision. Her daddy built her a “little room” that had black curtains and objects hanging from the ceiling in her preferred color. Her therapists were wonderful with learning about CVI and things they could do in therapy to help her. She began to make drastic improvements in her vision, as well as her motor skills and physical strength. She started rolling over at eight months old; and by that time she had great head control. When she turned one on May 22, 2013, she was rolling everywhere, sitting up with her hands out for 30 seconds and saying a few words. Her first word was “Bubba” at around ten months old. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">When Alyssa was 15 months old, she started Project IMPACT at the T.K. Martin Center for Technology and Disability, a special needs preschool in Starkville, MS. We moved our family over an hour away to be closer to Alyssa’s school and therapy center. It was at Kids Therapy Spot in Starkville that Alyssa started working with an occupational therapist that was experienced in working with children who have CVI. Through the therapist’s leadership and training of Alyssa’s additional therapists and teachers, Alyssa continued to make great progress with her vision. Alyssa uses a Light Box at school and in therapy. She also uses a LightAide that was purchased through generous donations from family and friends. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Alyssa is now in her sixth year at T.K. Martin. Her teachers and therapists continue to implement CVI strategies into her daily routine based off of the CVI Range Assessment (Roman-Lantzy). They have been an intricate part of her overall success. We have been very fortunate to have such a hands-on team approach. Over time, we have learned what works best for her and what doesn’t. There are times she needs visual breaks when she may have sensory overload or when she gets exhausted from using her vision a lot throughout the day. Children with CVI are never completely “cured” of their visual impairment, but hope is far from lost. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">CVI is the health crisis most people have never heard of. Now is the time for us to change that! The best thing we can do to help children with this visual impairment is to spread CVI Awareness. Through doing so, we can guarantee more children receive a proper diagnosis and have access to appropriate early intervention by trained professionals. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;"><b>What is CVI?</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">CVI is a brain-based visual impairment that affects the way the brain interprets what it sees. The individuals' eyes may be functional, but the necessary connections in the brain have been damaged. Thirty to forty percent of children with visual impairment have CVI in developing countries. An estimated 85% of children with CVI have additional disabilities. With the advancements in technology, more premature babies are surviving, resulting in greater numbers of children having complications associated with preterm delivery. There are many causes of CVI, such as oxygen deprivation, stroke, cerebral palsy, hydrocephalus, and microcephaly. Other etiologies in children and adults include traumatic brain injury, congenital anomalies, central nervous system infections, neonatal hypoglycemia, and seizures. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Children who present with these conditions should be screened for CVI. CVI is diagnosed by an MRI, an eye exam that does not explain the loss of visual function, a medical history that includes neurological problems, and the presence of the visual and behavioral characteristics of CVI. Because CVI can be difficult to diagnose, parent’s should stay adamant about finding professionals who can properly assess their child. Children diagnosed with CVI have a better chance of improving their functional vision by having a trained professional perform the CVI Range Assessment (Roman-Lantzy) to decide which phase they are in. CVI is broken into three phases—Phase 1 is the worst and Phase 3 is the best. Once properly assessed, the teachers and therapist will be able to develop a strategic plan based off of the child’s specific needs, allowing them adequate access to their visual surroundings. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Children with CVI have unique and specific needs based off of the degree and location of their neurological damage. Different tactics are needed for each child since some respond to specific colors while others may respond to light. Children with CVI may have difficulty recognizing faces or distinguishing facial expressions, accessing information in a cluttered environment, interpreting drawings, perceiving depth, distinguishing between background and foreground, and may have better peripheral vision than central vision. Children with CVI may also see better when an object is moving. Light fixation and light sensitivity are also common among children with CVI. Children with CVI may also get fatigued rather quickly and need frequent visual breaks.</span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;"><b>CVI Resources:</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Perkins: <a href="http://www.perkinselearning.org/topics/cvi">http://www.perkinselearning.org/topics/cvi</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">CVI 101: <a href="http://www.perkinselearning.org/cvi/101">http://www.perkinselearning.org/cvi/101</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">American Printing House for the Blind CVI Resources: <a href="https://cvi.aphtech.org/">https://cvi.aphtech.org</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">CVI Pinterest Boards: <a href="https://www.pinterest.com/pathstoliteracy/cvi/">https://www.pinterest.com/pathstoliteracy/cvi/</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">CVI Teacher Blog: <a href="https://cviteacher.wordpress.com/">https://cviteacher.wordpress.com</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Hands-On Activities and Resources for CVI: <a href="http://www.pathstoliteracy.org/topic/cvi">http://www.pathstoliteracy.org/topic/cvi</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Little Bear Sees: <a href="http://littlebearsees.org/">http://littlebearsees.org</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Strategy to See: <a href="https://strategytosee.com/">https://strategytosee.com</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Start Seeing CVI Blog: <a href="https://startseeingcvi.com/">https://startseeingcvi.com</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">CVI Focus Series: <a href="http://www.afb.org/store/Pages/ShoppingCart/HomePage.aspx">http://www.afb.org/store/Pages/ShoppingCart/HomePage.aspx</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">TSBVI Web Series: <a href="https://www.tsbvi.edu/cvi-exercise">https://www.tsbvi.edu/cvi-exercise</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">West Virginia Department of Education Training Material: <a href="http://wvde.state.wv.us/osp/vi/cvi/">http://wvde.state.wv.us/osp/vi/cvi/</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">CVI Hub for Parents: <a href="http://www.perkinselearning.org/cvi/parents">http://www.perkinselearning.org/cvi/parents</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">CVI Hub for Educators: <a href="http://www.perkinselearning.org/cvi/educators">http://www.perkinselearning.org/cvi/educators</a></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">CVI Hub for School Districts: <a href="http://www.perkinselearning.org/cvi/school-districts">http://www.perkinselearning.org/cvi/school-districts</a></span></span></div>
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Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com26tag:blogger.com,1999:blog-7997173714041484752.post-87027807747922492392018-09-14T10:44:00.000-07:002018-09-14T11:14:40.569-07:00Why Quality Time With Your Children Is Important<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHULytGN5ak33HN_6TkC6zplGT9vnw1O9T3ZpvJ_ciYg2ir_5ty49VCgD17JL382BOdfO_czKdd9AGIY_m5lsrB9eV3yeGDMatMPS8vkIFbfDvAIeWOU_51S0V69zb2kGHyapi3vpzc3ES/s1600/qualitytimepic.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="789" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHULytGN5ak33HN_6TkC6zplGT9vnw1O9T3ZpvJ_ciYg2ir_5ty49VCgD17JL382BOdfO_czKdd9AGIY_m5lsrB9eV3yeGDMatMPS8vkIFbfDvAIeWOU_51S0V69zb2kGHyapi3vpzc3ES/s400/qualitytimepic.PNG" width="400" /></span></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Many people go through life consumed by their never-ending to-do list—causing them to spend less and less quality time with the ones they love. That pile of laundry and those emails waiting in your inbox—they can wait. Your children need your attention more. Finding the balance between work life and home life is challenging. Quality time is the key to connecting those two worlds and creating a family dynamic that is impenetrable. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I was reminded of this recently by my two-year-old daughter while we were running errands. She was having fun playing with LEGOs while I was getting my tire repaired. When it was time to go, she started crying and saying she wanted to stay and play. I normally would have viewed her outburst as a typical toddler tantrum, but at that moment I slowed down long enough to really listen to what she was saying. <span style="font-kerning: none;"></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I had a choice to make. I could either go home and let my daughter play there while I did the work I needed to do, or I could spend quality time with her doing something she enjoyed. I chose quality time—and here’s why.</span></span></div>
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<span style="font-kerning: none;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">1. Children Grow Quickly</span></b></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Our children will only be small for a few short years that seem to fly by in the blink of an eye. These precious moments of youth should never be taken advantage of because soon they will not be as excited to spend time with us—their devoted parents who have raised them nurtured them and provided for them. Almost overnight their interests change and the disconnect begins. The thought of our children outgrowing us is not pleasant to think about, but it is a reality we must all accept. That is why we must embrace every possible opportunity to make memories with our young children while we can. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Feeling loved and important is a vital part of the human experience, especially in young and impressionable children. This is very important to their development; as well as building their self-esteem and self-worth. When children feel safe, secure, loved and valued, they are better equipped to live a fulfilled life and become successful adults—the goal for all parents. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Children often mirror the behavior of those they spend the most time with. If you want your children to grow up respectful, caring, well-mannered and responsible, you must model this behavior in front of them as much as possible. If you are not spending enough quality time with them, do not be surprised when they pick up traits you do not approve of. Teach your children to be leaders instead of followers. Always make an effort to set a good example for your children to follow, especially during quality time. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">When you spend quality time with your children, you are able to start seeing their personality develop, allowing you to get to know them better. By learning more about your children’s likes, dislikes and personality traits, you can plan your quality time according to their interests. Children thrive in an environment that is nurturing to who they are as individuals. Some children may enjoy a quiet setting, while others crave excitement and adventure. You will also start to see both their strengths and weaknesses, and in doing so, you can help them build on their strengths and become successful adults. </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">Addison playing with other children at the indoor playground.</span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>5. Children Need Someone to Confide In</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">There is a fine line between being a parent and being a friend. Both are important when establishing a strong relationship with your children. Being someone your children can trust and talk to openly is vital to their overall wellbeing. Start having open, honest discussions with your children at a young age so they can grow up knowing they will always have someone there to talk to when times get hard and they need advice and guidance. Be sure your children know that when they are with you they are in a safe place with no judgment or criticism. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>6. Children Need a Strong Relationship With Their Parents</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The most important benefit of spending quality time with your children is creating a special bond that will last a lifetime. Children can achieve more in their lives when they have a supportive family unit. The lessons and skills they learn from you will stay with them forever, which is why it is so important to start making those connections and building those relationships while they are young. The relationship will grow and change over time, as expected, but the security and love they feel with last forever. It is important to spend quality time alone with each of your children so that they all feel equally loved and valued. Ensuring each parent gets adequate quality time with the children alone is also important.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-kerning: none;"></span>Alyssa enjoys swinging at the park.</span></div>
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<li><span style="font-size: large;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The key to good quality time is being able to give your children your full attention and vice versa. Plan for when you will be least distracted. Make your quality time as personable as possible by ditching your phone. It’s rude! Always make eye contact when talking to your children. Remember that they are constantly learning from you, so emulate the type of behavior you expect from them. Showing mutual respect for one another will go a long way. </span></span></li>
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<li><span style="font-size: large;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Work in quality moments throughout the day. Everyone has a busy life, even our children, but setting aside a few minutes each day to really talk to your children and ask them about their day will help strengthen your relationship and make spending quality time together even more special. Planned outings are great, but spontaneous trips to get ice cream or go to the movies can be just as fun and memorable.</span></span></li>
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<li><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Spending quality time together as a family is also very important. Family game nights, movie nights, dinner traditions, Sunday Funday, jam sessions, grilling out together, holidays and family traditions are all great examples of quality family time. These bonding moments set the framework for how your children will value family in their own lives. </span></li>
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<li><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Spending quality time does not have to be expensive or difficult to come by. A good place to start would be asking your children what it is they would enjoy doing with you. If you are a busy working parent, use the time you do have with your children, such as after work and on the weekends. The benefits are endless, so make bonding time a priority in your family. Here are some ideas on ways you can spend quality time with your children. </span></li>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">1. Go to a park. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">2. Go to story time at your local library.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">3. Cook and bake together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">4. Play sports together or practice for a sporting event.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">5. Outdoor activities such as camping, hiking, bike riding, swimming.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">6. Go shopping together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">7. Read a book together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">8. Make arts and crafts together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">9. Watch a movie or tv show together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">10. Participate in your children’s hobbies.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">11. Attend school and community events together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">12. Go to the movies, concerts or amusement parks together.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">13. Go on a date of their choosing. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">14. Go to church together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">15. Go on a trip and explore a new city together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">16. Try something for the first time together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">17. Exercise together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">18. Take a dance class together. </span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">19. Make a scrapbook together.</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">20. Learn a new skill together (i.e. playing an instrument, learning a language, singing lessons).</span></span></div>
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<span style="font-kerning: none;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>If you have other quality time ideas, tips or a story from one of your quality time adventures, please leave a comment below. We all can benefit from sharing our own experiences and learning from one another. </i></span></span></div>
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Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com1tag:blogger.com,1999:blog-7997173714041484752.post-37663904829760209822018-08-24T14:43:00.000-07:002018-08-24T14:53:02.709-07:00Hot Mess Mom vs. Back to School<div class="separator" style="clear: both; text-align: center;">
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<span style="-webkit-font-kerning: none;"><span style="font-size: large;">Now that the first few weeks of school are under our belts, we can all take a collective sigh of relief. We all made it through the start of a new school year — and that’s something to be very proud of. If you’re anything like me — a hot mess the majority of the time — you had a pretty rough first week back. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">To begin, I have procrastinated for the past two weeks writing this </span></span><span style="font-size: large;">post — so here it finally is!</span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">I set the tone for how the first week of school would go by waiting until the day before school started to get school supplies. That followed with my hot mess fail of a first day.</span></span></div>
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<span style="font-size: x-small;"><span style="font-kerning: none;"></span>Triston and Addison on the first day of school</span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">My son, Triston, has a seizure disorder and takes medicine at a set time twice a day. It is very important that he doesn’t miss a dose. Because my middle daughter, Alyssa, goes to a different school than Triston and needs to be fed before school starts, my husband, Jonathan, takes Triston to school in the mornings. On the first day of school (when the carpool drop-off line is chaotic), what do I forget to do? That’s right! I forget to give Triston his medicine. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Luckily, my mom stayed with us the night before, and I was able to realize quickly that I had forgotten his medicine. I called Jonathan right away, and he hadn’t dropped Triston off yet. They pull out of the line and wait on me to get there. After giving him the medicine, we both decide to walk him to his classroom. This isn’t what we had planned the night before since Triston was going into second grade and he told us he was fine walking in by himself. However, we couldn't miss out on walking him to his classroom on his first day of school. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">After I get back home, we leave to go shopping out of town. I planned it early so we would be back in time to pick Triston up from school. Of course, I start running behind schedule and barely get back in time to drop my mom and youngest daughter off at home. Halfway to the school, I realize I had forgotten his name card that is mandatory for pickups. I rush back home, grab the card, and rush back to the school. Thankfully, the carpool line is still going. That’s better than I did last year on the first day of school when I was too late for carpool and he had to wait to be picked up from the office.</span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Wednesday of that week, Alyssa started back to school at her special needs preschool. The school does not have qualified staff that can handle her tube feedings, so I arranged to have her start school 30 minutes later so I can feed her in the mornings. That morning, I get up early and hook Alyssa up to her feeding pump at 6:30. Her feedings last an hour and a half. When the pump starts beeping at 8:00, I get her up and start changing her. It is a tradition that every year I take a “first day of school” picture. I could tell she wasn't having it, but I wanted to get the pictures anyway. </span></span></div>
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<span style="font-size: x-small;"><span style="font-kerning: none;"></span>She wasn't up for pictures that day</span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">In the middle of taking her pictures, she gets upset and starts gagging herself. I try for just one more picture — then lo and behold — she projectile vomits all over the floor! Thankfully, she didn’t get any on her clothes because she was standing up (always look for the silver lining). At this point, I’m way behind schedule, and we get to school later than I had intended. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Friday finally rolls around, and I think I’m out of the danger zone. What else could go wrong? Well… that day around noon, my hands and feet start to swell and I break out in hives all over my body! I was having a severe allergic reaction with no idea what caused it. The next day my mom was moving to the town we live in, so I had to suck it up and pull it together to help get the job done. I downed Benadryl and Naproxen all day and felt like complete crap, but there was no way I was going to let my mom down after all that she has done for us. The hives cleared up three days later, and my mystery allergy is still unknown. </span></span></div>
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<span style="font-size: x-small;">The first day of second grade</span></div>
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<span style="font-family: "helvetica"; font-size: large;">That sums up my hot mess of a first week back to school. Hope y'all </span><span style="font-family: "helvetica"; font-size: large;">had a better week than I did. Honestly, it wasn’t all bad. Memories were made and new adventures began. Life is full of hot mess moments that remind us to slow down and enjoy our crazy, messy, beautiful lives. Life is too short to worry about always being perfect. You are still a Super Mom or Super Dad even when you drop your kids off late to school. </span></div>
Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com11tag:blogger.com,1999:blog-7997173714041484752.post-24008789223791184692018-08-22T09:19:00.000-07:002018-08-22T09:47:59.276-07:00Tips on How to Talk to Children about Disabilities and Special Needs<div class="separator" style="clear: both; text-align: center;">
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Alyssa Claire Greer</div>
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<span style="-webkit-font-kerning: none;"><span style="font-size: large;">In a perfect world, my daughter would never be stared at, whispered about, made fun of, or mistreated by people who don’t understand her. Instead, she would be praised for her individuality, unique abilities, beautiful personality, and her capacity to overcome any obstacle put in her way. Although she faces many physical and cognitive challenges, she is still a six-year-old child — and it is my hope that she will grow up in a world that is more understanding and accepting. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">In order to make sure that our future generations grow up in this idealistic world, it is vital that parents spend more time talking to their children about disabilities and special needs. By normalizing disabilities and exposing our children to people with special needs, we are encouraging the creation of these relationships. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Finding the right words and timing to talk to your child about disabilities is challenging. Below are tips to help break the ice and begin the discussion. </span></span></div>
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<span style="font-size: large;"><b>1. Start the conversation </b><span style="font-kerning: none;"></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">If you haven’t talked to your child about disabilities, now is the time to do it — even if you feel uncomfortable or unsure of how to approach the topic. If you don’t talk to your child about disabilities then they are left to get their information from other children and adults who may not take the best approach. They will also begin to model the behavior of others on how they should treat people with disabilities, and in today’s society with bullying on the rise, you do not want your child modeling the behavior of disrespectful, ignorant people. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;"><b>2. Let them know that being disabled isn’t BAD</b></span></span></div>
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<span style="font-size: large;"><span style="font-kerning: none;">Start at a young age teaching your child about the differences people have. Tell them that differences are normal, but we all have many similarities — have them focus on these instead. </span>Tell them that some children are born with their disability, or have a hereditary condition and that some children become disabled due to a trauma at birth, or later in life from an accident. Be sure they understand that you cannot “catch” a disability from someone else. Encourage your child to come together with disabled children and bond over common interests. Talk about disabilities in a positive way. Help your child learn to see past a person’s differences and get to know them for who they are on the inside. </span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Encourage your child to engage and ask questions when they are around children with disabilities. It is much kinder for a person to be direct and open by asking questions and not ignoring them or staring. Try to answer your child’s questions the best you can. It’s okay if you don’t have all the answers. Be sure to let them know that. Encourage your child to talk to the child with a disability. If a child cannot speak for themselves, have your child talk to the parent. Most special needs parents will be more than happy to answer any questions you have and help bring awareness to the disability. It’s all about how you approach the conversation.</span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">The way you react to a person with a disability sends a strong message to your child. If they see that you are not afraid to approach a person with a disability then they too will follow in your footsteps. It’s human nature for children to want to ask questions and point out things they are not accustomed to seeing. Keep your composure and try to handle the situation in a nurturing way that will not upset either your child or the child with a disability. </span></span><br />
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<span style="font-kerning: none;"><span style="font-size: large;"><b>5. Encourage friendships</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Children with disabilities are still children first. They want friends, respect, and inclusion. Encourage your child to develop a relationship with a child who is disabled. If a child doesn't talk, there are still activities the children can do together, such as play board games or arts and crafts. The more they are around children with disabilities the more they will learn to see them as a “normal” peer, rather than someone “different.” Your child will begin to look past a person’s disabilities and see a person more for who they are on the inside. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Teach your child to stick up for kids they see being picked on, especially those with disabilities who cannot defend themselves. I don’t advise telling your child to start a fight with the child who is bullying, but rather tell them to stop being mean or tell a teacher/adult. Don’t teach your child to become a passive observer. Teach them to be an assertive, caring leader. Teach them that the way they treat people and respond to situations matters. </span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Teach your child how to use respectful language when talking to someone with a disability. Instill this in them at a young age. Encourage them to give compliments and not criticism. Reinforce with your child that name calling — even if meant as a joke — is always unacceptable because it is hurtful. Promote the use of positive language and put a stop to the use of words such as “stupid,” “dumb,” and “retarded.”</span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;"><b>8. Discuss the different types of disabilities</b></span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;">Be sure your child understands that not all disabilities are alike. Break down the differences between visible and invisible disabilities, as well as chronic illnesses and diseases. Help them understand that someone who has a physical disability may not necessarily have an intellectual disability, and vice versa. Also, be sure to let your child know that children with disabilities can do many of the same things they do, just in a different way. It might take them longer to do a task. They may need assistance or adaptive equipment to help them.</span></span></div>
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<span style="font-kerning: none;"><span style="font-size: large;"><b>9. Learn more about disabilities together</b></span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-size: large;">Take time with your child to read and learn more about disabilities to have a better understanding of a person’s experience. There are many great resources online and at your local library on this topic including books, articles, websites, and videos. Read picture books with young children and discuss them afterward. Chapter books with characters who have special needs are better for older readers. Ask your child about the book when they finish. Television shows, movies, and documentaries are another great tool for parents to use. </span></span></div>
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Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com1tag:blogger.com,1999:blog-7997173714041484752.post-47327490960369045662018-08-01T06:41:00.000-07:002018-08-01T13:05:32.017-07:00The Truth About Weight Loss: The Good, The Bad, and The Ugly<div style="font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
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<b>The Truth</b></div>
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If you’ve been struggling with your weight loss—getting started or staying on track—don’t get discouraged; you’re not alone. Losing weight isn’t easy. It takes a lot of determination and self-motivation. It takes sacrifice and making hard choices that put you outside of your comfort zone. It forces you to look inward and assess why you’re in the shape you’re in—and that’s hard for a lot of people. Because losing weight isn’t easy, not everyone can do it or be successful at it. According to the Centers for Disease Control, the obesity rate in America is somewhere between 26-32%, almost one in three Americans. Nearly all dieters (90-95%) regain the weight they lost within one to five years.</div>
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It’s a lot easier to stick with your current way of eating and not think about how the food you put into your body is affecting you both mentally and physically. It’s also easier to make excuses for why you aren’t working out. After all, we’re all busy. And when you don’t see results instantly, you throw in the towel without ever giving it your full effort. We’re a culture obsessed with instant gratification, and weight loss isn’t one of them. </div>
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After you can get past all of the things that have been holding you back and decide that you are worth the risk and investment, you can finally set your mind to changing your life for the better by losing the weight and getting in shape. Getting to that point is actually the hard part—not the journey itself (or so I thought). </div>
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<b>My Journey</b></div>
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Two years ago I decided to start making changes in my life and take control of my health and fitness. I had reached a point where I was completely unhappy with the way I looked and felt. I had just had my third baby, and I was carrying around years worth of accumulated baby weight. I knew I had to make changes in order to be a better person for myself and my family.<br />
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<b>The Good</b></div>
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The first step I took with my weight loss was deciding when to start my journey. No more excuses and no more putting it off. I had given the start date a lot of thought, and I set a time frame for when I would begin. I planned to start after my daughter’s surgery—around the time school started back—when things at home were calming down. I gave myself full control, rather than jumping in blindly without a plan. I set goals for myself and started out slowly. I also decided to make my journey public as a way to hold myself accountable, encourage others, and gain support along the way. That really helped. </div>
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I dove in head first and had a successful first month—losing five pounds. That first month, I didn’t do anything crazy with my diet or exercise. Instead, I opted to take it one week at a time and cut out bad habits slowly. I stopped drinking sweet tea and started drinking more water. I stopped eating junk food and started introducing healthy alternatives. I started walking and increased my distance each week. </div>
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The second month, I decided to incorporate more exercise and focus more on eating healthy. I chose to try low carb to see how it worked. That month I lost 10 pounds, and I knew I had found what worked for me. Seeing results helped keep me motivated and pushed me to keep meeting my goals. I celebrated every 10 pounds lost, and I challenged myself with new and harder exercises. I started weight lifting and gradually increased the weight and reps over time. I also started to jog and run sprints, as a way to build endurance and keep challenging myself. </div>
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I continued to lose weight at a steady rate. By the end of my first year, I had lost 64 pounds and was down from a size 16 to a size 8 (all without the use of diet pills, fad diets, or gym). I was only seven pounds away from my goal weight of 140 pounds last August. The best part of the entire process was witnessing the success of people I had motivated. Making my journey public was not an easy decision, but it was worth it if I could help just one person. </div>
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<b>The Bad</b></div>
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The flip side to all of the success—what most people never tell you about in regard to their weight loss journey—is the dreaded plateau and falling off the wagon. Losing weight challenges you both physically and mentally. It puts your will to the test and pushes your limits. It even tries to break you. Having a weight loss plateau is just one example. You may be doing everything right and still not seeing the scale move. Sticking with your weight loss can be so challenging at times. This is the point that most people throw in the towel, especially when they are giving it their all and not seeing the results. </div>
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One of my biggest challenges was overcoming my food cravings. I did well staying in control the majority of the time, but when I fell off the wagon, I fell hard. In the beginning, my slip-ups would last a few days, then progressively get longer and longer. Each time it became harder to get back on track. I felt like I was weak for giving in to my cravings, then I felt resentful toward my weight loss because it was depriving me of my favorite foods. When I found intermittent fasting (IF) I found freedom in food that I never had before, but even that success was short-lived.</div>
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<b>The Ugly</b></div>
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When I made it to my one year mark and was down 64 pounds, I made a very big mistake. I chose to take a break. This time, it was not a setback or a plateau, it was a conscious decision to stop. I thought I deserved a break from dieting and exercise because I had done so well over the year. I thought I could maintain my weight loss, and that I would still be in control when I was ready to start back up again. Boy, was I wrong, and it has been my biggest regret throughout my weight loss journey.</div>
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Starting back is what I struggled with the most. I kept telling myself, “I’ll start back Monday.” Well, when Monday rolled around I would make another excuse. What’s one little donut going to hurt? YOLO! That’s the sort of mindset that opens up a Pandora’s Box of bad choices. I quickly fell back into my old habits of stress eating and being lazy. I let outside factors (e.g. my special needs daughter’s constant illnesses during the Winter) weigh too heavily on me rather than using them as fuel to continue fighting for my weight loss success. </div>
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The weight started creeping back. It was slow at first while I continued to practice IF. I made a New Year’s Resolution to get back on track and start exercising again. But, my heart just wasn’t in it—that was the time I was at my highest stress level (cue the stress eating). At some point, I reached a total state of denial and pretty much gave up on myself. That’s where I’ve been the past few months. I’ve gained back 20 pounds of what I lost. I’ve gone up two dress sizes, and my confidence level continues to plummet. </div>
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<b>Getting back on track</b></div>
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I have become increasingly aware of how quickly I am gaining back the weight, and I know that if I do not intervene at this point I will become another weight loss statistic. I have worked too hard to let myself start back at square one. Ignoring my weight is what got me to 211 pounds, to begin with. It is time I start to make myself a priority again. I’m going to focus on why I wanted to lose weight in the first place. Getting into the right state of mind and making a plan of action will be the key to my success in the months to come. </div>
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August marks my two-year weight loss anniversary. I have decided this month (August 2018) will be my starting point for taking back control. I am going to emulate the actions I took at the very beginning of my journey. Taking things slowly and gradually changing bad habits worked for me back then, and I know they will work for me again. Because I haven’t worked out in months, I will need to take my exercise routine slowly and work myself back up the level I was at before. Exercise is something I have truly missed. I felt so empowered and strong when I was working out, and I had only just begun to tap into my full potential. It is my hope that I can regain that missing piece in my life, as well as finding freedom in food once again through IF. </div>
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If you have struggled with your weight loss or haven’t found the motivation to get started, there’s no better time than the present. It won’t be easy, but it will be worth it. Set obtainable goals and commit to making positive changes in your life. Having a workout buddy or someone you can go through the ups and downs of your journey with will be very beneficial. Reach out to others when you feel like you need a little boost. Anyone who has lost weight or is currently losing weight knows exactly what you’re going through. No one is perfect, but very rarely do people tell you the whole truth about weight loss. The good, the bad, and the ugly are what makes it such a fascinating journey. </div>
Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com14tag:blogger.com,1999:blog-7997173714041484752.post-75802275238902056132018-03-07T08:48:00.000-08:002018-03-07T08:48:08.464-08:00Why we chose to transition our special needs child to a medical daycare, and how it affects our entire family<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial, Helvetica, sans-serif;">Special needs parents become accustomed to being their child’s primary caregiver. After all, no one knows them better than us. We are the ones who have been there for them every strep of the way. Every doctor’s appointment and new diagnosis, every hospital stay and medical procedure, every illness nurturing them back to health, every late night meltdown and every miraculous moment they overcame an obstacle put in their way. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As our children get older and become ready for their next transitional step, whether it be starting preschool, mainstream school or attending a medical daycare facility, it never gets any easier as a parent to give up more of our caregiving role and put our children in the hands of someone else. However, this is a necessary step and important for the development of the child and the relationship they have with their parents and the outside world. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Last week marked the start of a new chapter for our almost six-year-old daughter, Alyssa, and our entire family. Alyssa will now be attending a daycare facility for medically fragile children called PediaTrust in Columbus, MS. She gets picked up from school and transported to the center, where she spends the remainder of the afternoon until they bring her home. At the center she receives therapy, works with a special education teacher during a designated time, participates in group activities such as arts and crafts, story time and music therapy. She also gets one tube feeding during lunch time while she is there. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The decision to start PediaTrust was made primarily due to the fact that my husband Jonathan and I do not want Alyssa to attend public school in the classroom after she ages out of her special needs preschool T. K. Martin Center for Technology and Disability Project IMPACT, which could potentially be next school year. The reason for this is because of her extensive medical conditions that impair most every aspect of her development. She needs extra care and attention that we feel would not be given to her in the public school setting. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Alyssa enjoying her time at PediaTrust.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We knew we needed to come up with a plan that worked best for Alyssa. Many special needs families decide to homeschool, but we did not feel that would be best for her. She thrives from interaction with her classmates and the structure she gets while at school and in therapy. We wanted to give her as much of that same structure as possible. Therefore, PediaTrust became our best option along with homebound education. After she ages out of T. K. Martin we will enroll her in our local school district, but put into her IEP (Individualized Education Plan) that she will be homebound and receive her education from a teacher that comes to our house. By choosing not to homeschool and do homebound, she will be able to receive the resources obligated to her as stated in her IEP, such as vision services. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Even though we knew PediaTrust would be the best environment for Alyssa, we still struggled with the decision to send her. Would she be safe riding the bus? Would there be a tube feeding fiasco? Would they know how to handle a meltdown and calm her? Will she be able to function throughout the day if she doesn't take a nap? Will she act out because she is frustrated and hurt another child? These were all valid concerns, but ultimately we realized we had to do what was in the best interest of Alyssa. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The staff at PediaTrust.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We are choosing to put our faith and trust in the well-trained pediatric nurses at the facility. We are choosing to believe that they too will fall in love with the spunky, vibrant, silly little girl that is Alyssa and take care of her to the best of their ability. Individuals that choose to work with special needs children are a Godsend in my opinion. We refuse to be the parents that live in fear of every possible thing that could go wrong with our child and always assume the worst in people who take care of them. By giving into that fear Alyssa would miss out on a great opportunity to interact with other children and create experiences that will enrich her life. We chose to put her needs above our concerns. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As Alyssa’s mom and primary caregiver I feel that I am struggling the most with this transition. I have always been the one to administer her tube feedings and take her to and from school and </span><span style="font-family: Arial, Helvetica, sans-serif;">therapy. I’m learning to let go of my need to control every aspect of Alyssa’s daily care. I cannot be there with her at PediaTrust to tell them when or how to feed her. Sometimes she prefers to be mobile and wear her feeding backpack and other times she may be content eating while in a highchair, doing an activity, or even while napping. I know what has worked best for her in the past and have learned many things through trial and error. I know when Alyssa is getting upset because she is tired and needs a nap and I know when she is getting frustrated and needs a break. These will all be things her new caregivers will have to learn about her. I am still learning new ways to care for Alyssa even after five and a half years.</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Alyssa enjoys being indepent while eating.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Along with having to learn how to let go of being in control, I’m learning how to cope with the mom guilt I feel about sending my child to daycare while I’m a stay-at-home mom who doesn’t work. In the back of my mind I have this guilt because I feel like I should be the one taking care of Alyssa and spending that time with her. I chose to be a stay-at-home mom many years ago in order to take care of her and be the one to take her to and from school and therapy. I know just how fortunate I am to have the ability to stay home with my kids and spend quality time with them, so I feel that I am being unappreciative of my situation by choosing not to spend every second I can with Alyssa. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The mom guilt I feel will always be there, mostly because I will always miss her when she is not with me, but my rational brain knows that it is okay that my nearly six-year-old daughter is not at home during the weekday (well actually just four days out of the week). Sometimes it is hard for me to accept that Alyssa is growing up and not a little baby anymore. Neurotypical children her age are in kindergarten all day and preparing for first grade. We feel that what is best for Alyssa is to have as close of a normal structured “school” day as her peers, but in a safe, secure environment such as PediaTrust. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">This is now what my typical day looks like!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Alyssa’s new schedule has changed my day-to-day routine drastically. Now, I only have to take her to school in the morning and pick up my seven-year-old son Triston from school at 3 o’clock in the afternoon. By not having to pick Alyssa up from school and take her to and from therapy in the afternoon throughout the week I have more time to spend at home with Addison, my nearly two-year-old daughter. This gives Addison more of a structured day and allows us more time for spontaneous, fun outings. I also have more time throughout the day to spend doing things for myself, such as working on my blog and website, exercising and relaxing while Addison takes her mid-day nap. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I still feed Alyssa before school and at night, but somehow by taking away just one feeding during the day allows me to feel less like Alyssa’s “nurse” and more like a typical mom to her. I know that may sound strange, but keep in mind I have performed the duties of basically a nurse for my child over the past four years. Tube feedings, diaper changes, bath times, administering shots, dressing, personal care, you name it and I have to do that for my child every day because she is unable to do them on her own. Any opportunity I have to give that responsibility to someone else I feel a sense of relief, primarily because of how taxing it can be to constantly be my child’s caregiver. All special needs parents need and deserve a break from time to time. My husband and I are very fortunate that my mother is able to care for Alyssa and all of her needs during times we want to go on a date night or have a few hours to ourselves. I feel that Alyssa’s new schedule will give me more of a sense of being her mom rather than just her full-time nurse/caregiver. I want Alyssa to gain that awareness as well because I feel that is vital for our relationship. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Alyssa loves riding on the bus to and from PediaTrust.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Alyssa now rides a bus home from daycare. Something about having them drop her off at home adds a sense of “normalcy” to her daily life. I love seeing Alyssa doing things other kids her age are doing even if they are done in different way. Alyssa has taken dance, cheerleading and horseback riding. It took time for her to get accustomed to all of them. She would cry and gag herself to the point of throwing up at beginning of class, but over time she grew to love them. I accept that Alyssa will have a transitional period with this new environment and that there will be days when she isn’t her happiest. She is a very headstrong, assertive little girl. Add on top of that being non-verbal and unable to express her thoughts and feelings about being in a new place and seeing new faces. I would be throwing a fit too. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Another aspect I have to consider is how this change affects Jonathan. We discuss and decide every aspect of Alyssa’s care as a team. We have become pretty efficient with communicating our emotions, concerns, needs and feelings over the years. We discussed in great lengths all aspects of what this transition would entail and how it would benefit Alyssa, but just as I am having to adjust to the change, so is he. He recently explained to me that it took him time to accept and be okay with someone other than myself being Alyssa’s primary caregiver. Just as I had to learn to trust others, so did he. He expressed that not only does he worry about Alyssa while she is out of my care but also how I am dealing with her absence. He has a lot on his shoulders with work stress and providing for our family financially. I am very fortunate to have such a loving and devoted partner to raise our children with. His bond with Alyssa, as well as our other children, is like no other. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As special needs parents we do our best to ensure our children have the best life possible. In doing so we must sometimes make hard decisions based off of what we feel is best for our child. Many times we question ourselves endlessly over those decisions. We’re only human after all, but it was bestowed upon us to have the greatest gift of all — our special children. We must learn to trust our intuition and believe wholeheartedly that we are making the right choices for their wellbeing. Ultimately what matters the most is that our children are happy and well taken care of. Everything else will fall into place</span><span style="font-family: Helvetica;">. </span></div>
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Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com1tag:blogger.com,1999:blog-7997173714041484752.post-39626794898849742272018-01-11T12:32:00.001-08:002018-01-11T12:47:41.983-08:00How to plan for your child's surgery in 5 easy steps<div style="font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
Hospital stays, no matter the length of time, can be unpleasant and nerve racking. You are already having to deal with stress and worry surrounding your child’s surgical procedure, so the last thing you want to be worried about is something you forgot to pack or plan for. Being prepared will help ease your mind and make your stay a little bit easier. </div>
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In this post I will break down the 5 easy steps you can take when planning for your child’s next surgical procedure. These steps apply to both outpatient and inpatient procedures. </div>
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<b>Step 1. </b><br />
<b>Plan child care for other children.</b></div>
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Be sure to have a plan in place for someone to watch your other children, whether this is at home or at the hospital. I suggest having a relative or friend watch your other children at home so you will have less distractions and worries the day of surgery. So much will be going on already, that having to stop and deal with a tantrum, could be overly distracting. Your child that is having the surgery needs your full attention, both before and after surgery.</div>
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Expect to be waiting there for HOURS before surgery even starts. You will have to wait in two or three different waiting areas, and a few different rooms before they take your child back. </blockquote>
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<b>Step 2. </b><br />
<b>Plan your arrival time. </b></div>
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Know the exact address and location of where the surgery will take place. If you have never been there before, be sure to know the best route to take and the time it will take to get there. Plan ahead for travel time and consider weather conditions, traffic, and parking. It is important to know exactly where to park and if there will be any construction work going on in that area. Call the hospital in advance for this information. </div>
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Plan for the time it will take to unload everything from your car and walking to the registration desk. Be sure to give yourself enough time for this. </div>
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Get gas the day before so you don’t have to stop early in the morning. Overestimate the time you think you will need by at least 30 minutes. It’s always better to get there early rather than late. Be sure to get your parking validated before leaving. Every hospital is different about how they do this, so be sure to ask when you check in. </blockquote>
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<b>Step 3. </b><br />
<b>Packing your bag.</b></div>
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Pack your bag a day or more in advance. Include your clothing items, hygiene products, something to keep you busy while you wait, such as books, iPads, movies, crossword puzzles, etc. Don’t forget any electronic chargers you will need. Also, be sure to pack snacks to save money. Eating at the hospital can get costly. I recommend eating from the cafeteria rather than the fast food restaurants, if they have any. </div>
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Be sure to pack all of your child’s vital information, such as insurance card, medical records, labs results, X-rays, letters from the doctor, or anything that the doctor’s office told you would be required to have on the day of surgery. Pack these items where you can get to them quickly if needed. </div>
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Expect to be waiting there for HOURS before surgery even starts. You will have to wait in two or three different waiting areas, and a few different rooms before they take your child back. </blockquote>
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<b>Step 4.</b></div>
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<b>Packing your child’s bag.</b></div>
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Pack your child’s bag a day or more in advance. Pack any comfort items they will need, such as pacifier, favorite toy, iPad with movies to calm them, favorite stuffed animal, blanket and pillow from home. You want to make them feel as comfortable as possible. </div>
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Be sure to pack any medical supplies your child will need, such as medications, tube feeding supplies, and other medical supplies or devices. Pack extra in case the hospital doesn’t have your child’s specific formula in stock. Be sure to pack extra in case you have to stay overnight. </div>
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The night before, be sure to follow any guidelines the hospital or doctor’s office gave you regarding what and when your child can eat and drink. This also applies to any medications they take. </div>
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These comfort items will be needed most after surgery when your child starts to wake up from anesthesia and when they are able to call you back. Be prepared to see your child in pain and crying. This can be very hard to watch and I truly hope your child gets through this phase quickly. Depending on the type of surgery your child had, the pain level will vary. Be sure to talk with your child’s doctor about pain management methods. </blockquote>
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<b>Step 5.</b></div>
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<b>Expect the unexpected.</b></div>
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It is always scary to think about your child’s surgery not going as planned and turning into an overnight stay or extended stay, but it does happen. This is why it is important to be prepared for this by packing an emergency overnight bag with extra clothes and hygiene products. Be sure to do this for both yourself and your child. Have extra money for spending as well. Cash and change will be useful for times when the cafeteria is closed and you want a midnight snack. </div>
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Be prepared to sleep horribly. Most hospitals only have “beds” for one parent, so be prepared for this. You may want to plan to have one parent stay with your child at night and the other stay at home with your children, or stay with a friend/relative that lives close to the hospital. Or if all else fails get a hotel room. Check to see if the hospital has a program in place that helps with providing discounted rates on hotels or a complimentary stay. Also, be prepared to be woken up every few hours throughout the night when nurses come to check your child’s vitals. </blockquote>
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Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com1tag:blogger.com,1999:blog-7997173714041484752.post-76509793264447885382018-01-07T11:16:00.000-08:002018-01-07T11:28:51.084-08:00How to survive flu season with a medically fragile child<div style="font-family: Helvetica; font-stretch: normal; line-height: normal;">
Unfortunately, the best way to survive flu season while having a medically fragile child is to avoid as many situations as possible that put your child at risk of catching an illness. </div>
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Sometimes that requires having to miss certain family events, birthday parties, holiday events, even school and therapy. </div>
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For medically fragile children, exposure to people in a household that have had the flu can be serious to their health. So, it’s extra important to be aware of the people you put your child around when they are medically fragile. </div>
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Yes, it’s hard when any child gets sick, but when children that are medically fragile get sick, it is taken to a whole other level. Unless you have experienced and witnessed your child in such a fragile state, you couldn’t even comprehend. </div>
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I’ve seen my daughter go through way too much already, that if I can do something as simple as keeping her from a person that I know has the flu or a stomach virus or a cold, then I’m going to do that. </div>
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I’ve seen Alyssa go through weeks of being ill and not being able to get out of bed, not being able to keep down her food, not being able to lift her head even on days, because she is so weak and fragile. </div>
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When you’ve seen your child go through something like that it changes you. It makes you want to do even more to protect them. And if that means we have to miss a birthday party or family event, then that’s what we’re going to do. </div>
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What defines a medically fragile child?</div>
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Medically fragile children are children that have feeding tubes, tracheotomy devices, need heart monitoring, oxygen, or IV medication administered. It is any child that has extensive medical needs beyond your average care for other special needs children. </div>
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Alyssa is considered medically fragile because of her feeding tube. It is her sole source of nutrition, and because if that her needs can be extra challenging, especially during flu season. </div>
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When Alyssa gets sick it affects her in ways that are so different than the average person when they get a cold or flu, or even a stomach virus. </div>
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She becomes very weak and lethargic. She’s unable to keep down her feedings. She constantly throws up. </div>
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Alyssa is five and a half years old and only weighs between 31 to 32 pounds. When she gets sick and she’s unable to keep down he feedings, she can easily lose a pound d or more during the week span that she is sick. </div>
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She can get dehydrated very easily, and if it wasn’t for her feeding tube, there would be many times that we have had to hospitalize her based off of a simple cold. </div>
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We’ve been fortunate this flu season to not contract the flu in our household, but Alyssa has had her share of illnesses over this season. </div>
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<span style="font-family: "helvetica";">Being sick is no fun!</span></div>
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Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com2tag:blogger.com,1999:blog-7997173714041484752.post-13113068682572691102018-01-05T21:12:00.000-08:002018-01-05T21:17:00.158-08:00Navigating the world of a non-verbal child<div style="font-family: Helvetica; font-stretch: normal; line-height: normal;">
Having a child that is non-verbal presents many challenges, and no length of time ever makes the lack of speech any easier. </div>
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There are many days I wish my daughter could simply tell me what’s wrong and when she's hurting. I wish I knew how to fix whatever is bothering her at the time. I can see the frustration she goes through, and it breaks my heart. </div>
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We are fortunate that she can say a few words (mama, buba, dada). When she gets really upset and whinny is when I hear mama the most. She will start calling for me, and I just get as close as I can to her and do what I can to comfort her, without even knowing exactly what is wrong. </div>
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She has been getting so frustrated lately that when she cries she starts to gag herself. She will do this for long periods of time, while we are doing everything we can to try and figure out how to calm her down. </div>
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For the most part, I think her crying outbursts are her way of telling us she doesn’t want to do whatever it is she is doing at the time. For instance, the other night when she about to be hooked up to her feeding pump to eat, she started crying uncontrollably. I took this as an indication she didn’t want to eat at that time. </div>
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Instead of having her sit there and cry, I took her out of her high chair and started playing with her. I got her happy and distracted, and gave her time to calm down. An hour or so later I started her feeding, and she did fine. </div>
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Alyssa is just like any other five-year-old child. They all have times when they get tired, cranky, sad, mad or angry. Alyssa has all of those same emotions, but deals with them in a more internalized way. As she gets older I am seeing more of the frustration coming through with her not being able to verbalize her wants and needs. </div>
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Alyssa uses an AAC device (Augmentative/Alternative Communication) at school, therapy and home. It looks similar to an iPad, but way heavier and bulkier. Her teachers can program every aspect of the device, including the words and the background. Over time, Alyssa has made great advancements with the use of her device. She continues to impress her teachers and therapists. </div>
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The AAC device is great for communicating with Alyssa during certain activities, but it is limited to being able to express very basic commands. It is my hope that in time she will learn to use it more effectively, but our current delimma still stands, even with the use of the device. </div>
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Having breakthrough moments when I feel that Alyssa and I can connect and communicate, whether through words or not, is the most exiting moments I have as a special needs mom. I’m still learning how to navigate her world. It is an intricate and exciting world that we are all so happy to be apart of. </div>
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<span style="font-size: large;">Mommy and Alyssa</span></div>
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<br />Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com1tag:blogger.com,1999:blog-7997173714041484752.post-70583159145735950892018-01-04T17:28:00.000-08:002018-01-04T17:28:40.851-08:00My Biggest Problem with Holiday Break<br />
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<br />Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com1tag:blogger.com,1999:blog-7997173714041484752.post-78179444790465781762018-01-03T21:40:00.000-08:002018-01-04T17:35:46.453-08:00How Hot Mess to Super Mom was brought to life<div class="separator" style="clear: both; text-align: center;">
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<br />Anonymoushttp://www.blogger.com/profile/02041477270576838408noreply@blogger.com2tag:blogger.com,1999:blog-7997173714041484752.post-13119459195550234522018-01-01T15:02:00.003-08:002018-08-30T09:34:21.890-07:00Let Me Introduce Myself<div style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; line-height: normal;">
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At the beginning of the year, I made a commitment to focus on personal growth and pursuing opportunities that allow me to follow my dreams<span style="font-family: "helvetica";">—</span>one of those being the creation of my blog "Hot Mess to Super Mom." As my readership grows, I want to let everyone get to know me a little better. </div>
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For as long as I can remember I have always wanted to be a writer. As a child, I spent my free time writing stories and illustrating them while dreaming of one day becoming an author. My most treasured possession as a child was my typewriter.<br />
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In elementary school, I started a newsletter and began writing the first of many short stories. In high school, I started the school's first newspaper. I had drive and ambition at such a young age that I was able to carry over into adulthood. I turned my interests into opportunities to continue chasing my dreams.<br />
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As a freshman in college, I was chosen to be the editor of the school yearbook. It was everything I wanted all rolled into one. It allowed me to write stories, take pictures, design layout and oversee the entire creative process. I stuck with being a yearbook editor throughout college, and the experience paid for my four-year degree in journalism and graphic design. </div>
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After college, I worked as a newspaper reporter for one year. I loved the fast-paced grind of the daily paper. It was challenging and allowed me the opportunity to become immersed in the local community. I enjoyed being able to meet interesting individuals and tell their compelling stories. I learned so much within that year. </div>
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My next career endeavor required making a big move. My husband and I were newlyweds when I was offered a job working in public relations at a community college in another town. Together, we made the decision to move over an hour and a half away. I loved everything about that job. Not only was I able to write press releases and create graphic design material, I was able to work with the students on the yearbook. It was a dream job and a great opportunity to work my way up the ladder. </div>
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That was almost seven ago. I have not worked professionally since the end of 2011. You may be wondering what happened. Well, life is what happened. Things beyond my control began to occur, and I had to learn to accept that life does not always go as planned. My career was put on hold indefinitely after our second child was born with multiple disabilities. </div>
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Her needs took priority over my own. She needed me more than I needed my career. Those first few years were a blur of medical testing, multiple diagnoses, dealing with insurance, surgeries and feeding tubes, daily vomiting and formula spills, an endless accumulation of new specialists and frequent doctor visits, navigating the world of early intervention and therapy, and the constant worry of what the future held. </div>
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Over time I began to let myself go and not care as much about how I looked. My weight continued to go up, and the stress of having a child with special needs began to wear on me both mentally and physically without me even realizing it at the time. My day-to-day life revolved around Alyssa’s schedule. My oldest son, Triston, who was not in school at the time, stayed at home with me and would accompany me and Alyssa to all of her appointments. That is the only life he has ever known. </div>
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Growing my family was something that meant a lot to my husband and I. With the birth of our third child, I felt my family was finally complete. Having three children has had its challenges, but I wouldn’t change anything about it. Two years ago I finally reached a point that I knew I needed to make changes to my life in order to find inner-happiness and become the best mom and wife I could be. </div>
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I started my weight loss journey in August 2016. For the first year, I focused on eating healthier and becoming more physically active. I had never dieted or tried to lose weight before, so I had years of baby weight and food addictions to overcome. It wasn’t easy and I fell short more times than I can count, but what I accomplished in that one year helped motivate me and bring back my confidence. I lost 64 lbs and four dress sizes. I still have a long road ahead of me and many health and fitness goals I want to accomplish.<br />
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Changing my mindset and outlook over the past two years not only helped me reshape my physical appearance, but it also reignited a flame inside of me that hasn’t been lit since I worked six years ago. I had this longing and a nagging feeling of being incomplete, but I wasn’t sure exactly what was missing or how I could fill the void. Certain areas in my life had to become more figured out before I could start focusing on my own ambitions. </div>
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Alyssa’s future has always been a bit of a mystery. We have chosen to enjoy life living in the moment without a sense of fear and worry of the unknown. I don’t put a value on other people’s expectations of my child. I let Alyssa determine what she will accomplish in her own time, while always giving her every possible resource available that will help her reach her full potential. We celebrate each and every inch-stone as they come, and take things one day and one step at a time. </div>
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For the longest, I have pretty much determined that Alyssa would need me on a full-time basis for all of her daily care, aside from when she was at therapy (Kids Therapy Spot in Starkville, MS) and her special needs preschool (T.K. Martin Center for Technology and Disability's Project IMPACT, located on the Mississippi State University campus in Starkville, MS). We’ve known from the beginning that Alyssa would only be able to attend Project IMPACT for a short time. Children age out of the program at the age of five. Each school year has been a blessing because we never know if funding will be available. Knowing that Alyssa would one day age out, I began planning for life after T.K. Martin, which hasn't been easy. Alyssa has attended there since she was 15 months old. *(edited to note that Alyssa is, in fact, attending T.K. Martin for her sixth year)</div>
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Last year, I had a meeting with our school district to determine if I wanted Alyssa to attend their special education class or be considered homebound (receive services from a teacher and therapists at home) after she ages out of T.K. Martin. The answer was made very clear to me at the time based off of the school’s limited funding<span style="font-family: "helvetica";">—a big fat NO</span>. I was not happy with the thought of Alyssa missing out on being with other kids throughout the day, but I knew I needed to put her safety and medical needs first. We have always enrolled Alyssa in extracurricular activities that give her the chance to experience things, other typical children, her age do. Therefore, I had planned to make the best of our homebound experience and get her out of the house and engaging as much as possible. </div>
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A new blessing entered our lives in the form of a care facility for medically fragile children called PediaTrust in Columbus, MS. PediaTrust allows Alyssa to attend the center (with a schedule of our choosing) and engage in a variety of activities, therapies, and interactions I could only dream of. There, she is cared for by a team of well-trained pediatric licensed nurses. She started PediaTrust in March two days a week after school. We started her slowly to see how she would adjust to the new environment and schedule. She is now attending the center four days a week after school and gets all of her therapy done there (except for aquatic therapy). Alyssa thrives in an engaging environment around other kids<span style="font-family: "helvetica";">—and PediaTrust offers just that. </span></div>
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Overnight it felt like I had this huge weight lifted off of me. I didn’t have to worry about the unknown of Alyssa’s day-to-day care anymore, and all the responsibilities did not have to lie solely on my shoulders. I could finally have a life outside of just being Alyssa’s caregiver. However, putting my child and her care into the hands of someone else was not easy for me, but it was a necessary step I had to take. </div>
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The timing felt right for me to start thinking about my future again and what I personally wanted out of life. Did I want to go back to work? Did I want to get my master’s degree? Did I want to start my own at-home business? The opportunities felt endless. At that time, I knew I wasn’t ready to go back to work full-time and put my one and a half-year-old in daycare. I love the quality time I get to spend with Addison. I value being able to be a stay-at-home mom, thanks to a devoted and hard-working husband that supports our family, and I realize others are not as fortunate. </div>
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Over the past few years, I have made our family’s struggles and triumphs public through my personal social media account. Many family, friends and even strangers, have become invested in Alyssa’s journey, as well as my own. I love having the opportunity to share these stories with the world. Through that passion and desire, I have decided to invest my time and energy into my blog that will chronicle my life and my family’s highs and lows. I want to show the world that no matter the challenges you face you can overcome them and live the life you have always dreamed of.</div>
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I’m starting this next chapter in my life with an open mind and an open heart. I am taking on things I have never done before, and I am willing to learn from scratch<span style="font-family: "helvetica";">—</span>while sometimes making a complete fool of myself. After all, being a Hot Mess comes naturally! I know I won’t be a success overnight, but if I put my heart and soul into everything I do, the world will see how genuine and cathartic this endeavor is for me. </div>
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I want to have something that I can look back on and truly be proud of. I want my kids to see me living my dreams and investing in myself, as well as my family. This website is only the beginning for me. I still have a long list of things I want to accomplish, and here is where I plan to open myself up for the world to see. </div>
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This has been years in the making. </div>
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I’m finally ready!</div>
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