Kristina Szalay Arocho is an Author, Educator, Speaker, NCAA Champion
Kristina Szalay Arocho is an Author, Educator, Speaker, NCAA Champion, 4 Time Hall of Fame Inductee but most important, she is a Mom to a very special little girl who has SPD. Now, this Mom has written a Book about some personal experiences concerning this topic and has also decided to become an Advocate for SPD and let everyone learn more about it. It’s a life-changing decision for this Mom, one she is willing to take.
BF 1. Hi Kristina and we would like to say thank you for spending some time with us. To start off with, can you tell us a little about yourself, so our readers have a better understanding of who Kristina Arocho is.
KA 1. Thank you very much for allowing me to speak with you about such a powerful and passionate topic. Kristina Arocho is your average New Jersey native who began bowling at the age of 4 and became highly successful at a young age. I was the youngest qualifier in NJ for a state-level tournament who then went on to become a top high school female bowler. At Paramus Catholic High School, I was named First-Team All-County, All-State, All-Region, MVP, Captain, and eventually All-Decade. During my senior year I signed a National Letter of Intent to become the first recruit for the newly formed NCAA Division 1 Women’s Bowling team. During my time at Fairleigh Dickinson University, I was named Rookie of the Year, All-Conference, All-Tournament Team, Academic All-American, Player of the Week, Coach’s Award, and my final tournament during my senior year was winning the 2006 NCAA Division 1 National Championship. The following month I received my Bachelor’s degree in Psychology and immediately continued my studies to obtain my Master’s degree in Teaching and Supervisor of Education. Upon completing my Master’s degree, I secured a position as an elementary teacher where I continue to teach currently. During this time, I coached high school bowling and have had 4 Hall of Fame inductions along with professional accolades. Three and a half years ago, my husband and I welcomed our beautiful daughter, Catalina, into this world and from that moment on I have been in full mommy mode ensuring her needs are recognized and met, if not exceeded. Throughout this process of becoming immersed into the world of Sensory Processing Disorder, I have spent countless hours researching, learning, and finding the correct care for Catalina. Now, it is time to advocate for Catalina and the other children who are challenged each day with this disorder.
BF 2. Tell us a little about being part of an NCAA Championship team and all the work that went into becoming a Champion
KA 2. Being part of a NCAA National Championship team was the most exhilarating, yet rigorous time in my athletic career. When I first met the other ladies on my team, I was intimidated. I was extremely worried I wouldn’t be a good enough bowler and they would be the better members of the new women’s bowling team. After working with them, attending classes with them, and having practices and tournaments, I quickly realized we were all equal and needed each other to accomplish our goals. To say we out forth blood, sweat, and tears is an understatement. Our team started as 5 ladies for a 5-bowler team our freshman year to over 15 ladies our sophomore year, traveling the country with an “A” team and “B” team. A lot of us encountered injuries, struggled with time management with balancing our full-time class schedule with mandatory workouts, practice, and traveling. During a practice at the end of my junior year, I felt a pop in my shoulder. I had some pain, but I always viewed myself as a fighter of my goals. During that summer, I stayed away from bowling and began some physical therapy to get my shoulder back for my senior year. Once senior year started, and bowling was back in full swing, the level of pain I had was incredible. After having tests and scans, the doctor found I had completely torn my rotator cuff. By this point, the ladies I was intimidated by were now my family and there was no way I was leaving my family. I absolutely refused to stop bowling and agreed to numerous physical therapy sessions on campus along with checking in with the doctor and following his orders. In the months leading up to the National Championship, practices became intense and I found myself as the cheerleader more than the bowler to reserve my shoulder for tournaments. Finally, the announcement came as to which teams were qualified to attend the 2006 NCAA National Championship in Texas and Fairleigh Dickinson University was invited! I started to receive cortisone injections with anti-inflammatory medication, so I could last until Texas. One night as I sat in my dorm room, I promised myself that if I put myself through this physical journey I would make sure it was worth it by bringing home a championship. About a month or so before the championship, we had a practice session in which my roommate (teammate) drove, so after practice I left my equipment in her car while she went the mall. When she walked out, she noticed her car had been stolen and all our bowling equipment was stolen too! We scrambled to get basic equipment and I wore my assistant coaches’ shoes to Texas. I didn’t have much time to learn my equipment, let alone know which bowling ball to use on which oil condition, it’s reaction, what I had to do to adjust to it, etc. It was finally April and the moment of truth was upon us. While in Texas, I followed the doctor’s orders of ice and heat with medication and paced myself throughout the multiple days of competition. After a rigorous few days of competition, we made it to what was called, “the tv match.” With the lights bright and hot, lane conditions shifted quickly and luckily so did my family! We won the 2006 NCAA National Championship and I couldn’t think of a better team to have won it with.
BF 3. Do you feel being on a Championship team such as the one you were on, helped you look at life in a different way both personally and professionally. And rumor has it, you are a multi-time Hall of Fame Inductee and that your college even retired your team number. Is that true?
KA 3. Being on a championship team has definitely helped the way I look at life in all aspects of my life. I have learned patience, perseverance, teamwork, and determination which I take with me everywhere. It has also helped me to see how everyone has their strength they bring to the table and how when one person is struggling, there are others there to support and carry them through. There were plenty of time I needed my teammates support whether it was due to mental fatigue, physical injury, family tension, or a bad bowling day. These ladies were always there to support me and just as I was when they needed support. I have taken these notions with me to complete my master’s degree in just 4 semesters while working a full-time job and as a graduate assistant in the athletics department. In my professional interviews, I have always talked about being a team player and how there is no “I” in my collaboration with colleagues. I also feel this training has made me a better wife and mother. Yes! I have 4 Hall of Fame inductions and my #7 (go Mickey Mantle!) was retired at Fairleigh Dickinson University in September 2013. I was very honored when I was told this was happening and am elated that I left an impression worthy of this caliber.
BF 4. Today for many reasons it seems as if life is now taking you into a new direction. Can you explain a little about that?
KA 4. For the past 8 years, I have been focused on my teaching career and advancing my career by obtaining my Supervisor of Education certification and am in the process of completing my Educational Administration certification. While I continue to keep my profession in focus, I am shifting gears in how I want to work with and assist children. When my daughter was a year old, I noticed her speech was not where it should be. I sought out an evaluation and it turned out her speech was delayed; yes even at just 14 months old. She was in speech therapy for about a year and exited, but shortly thereafter I noticed a regression and had her re-evaluated. She entered speech therapy a second time, but during this time her temperament drastically changed and was exhibiting other behaviors I didn’t have a clue about. I would speak with my principal a lot about my daughter’s behavior and sometimes cried because I felt I failed her. There were only a handful of people who understood me, but most thought she was a typical “terrible two’s” baby and she would “get over it.” I felt deep down inside something was different. She became physical aggressive towards me, pulled her hair, hit herself with her hand, screamed, yelled, cried, ripped off clothes because of the tags, screamed at the sound of a hand-dryer and vacuum, showed anxiety at school, spun in circles, couldn’t sleep through the night, screamed when we put socks on her, screamed at the sun, always said her underpants hurt her, and the list goes on. These behaviors continued for months and months and that’s when I decided to seek out the new occupational therapist at the same facility she went for speech. After voicing my concerns to the director, she also agreed an evaluation was an ideal next step. This evaluation did in fact detect sensory processing challenges, fine/gross motor deficits, and visual integration deficits. I immediately wanted to know everything there was about this new chapter in our lives and if in fact her behaviors were at all connected. In devoting my time, research, and energy to learning about Sensory Processing Disorder and how I can help my daughter, I learned Sensory Processing Disorder is not a recognized diagnosis in the DSM-V (Diagnostic and Statistical Manual) utilized by physicians, psychologists, and psychiatrists. There is much controversy over whether children who present with sensory processing challenges have altered sensory pathways in the brain or have another underlying condition in which sensory processing is affected by. There are some organizations and medical research centers that have been undergoing studies to uncover this disorder and determine its origin. I would like to thank those organizations for their hard work and dedication. Such organizations as the Star Institute in Colorado and Dr. Elysa Marco at the University of California San Francisco.
BF 5. Tell us readers about Sensory Processing Disorder and how it could affect someone.
KA 5. Sensory Processing Disorder is a neurological condition in which the brain receives information from our senses, but isn’t able to properly analyze and categorize them resulting in abnormal responses. So, essentially, there isn’t any impairment with our senses, it is within the brain. It is often referred to as a “traffic jam”. For example, in a non-SPD (Sensory Processing Disorder) person, the feel of a tag may not even be noticed or at most just may be annoying. To a person with SPD, the tag could feel like pricks from a cactus. To me (non-SPD) underpants are often not even recognized while wearing, but to my daughter she is unable to wear them due to the pain and discomfort the feel of them bring her. She even had a behaviorally negative week at school not too long ago as a result of the pain and discomfort underpants brought her. Once we removed them and kept just her pants on, she returned to a happier student who listened to her teacher. Growing up, I always learned and recognized humans as having 5 senses, but we in fact have 8. These include the more thought of 5 (smell, taste, sight, sound, and touch), but we also have 3 internal senses (vestibular, proprioceptive, and interoceptive). Our vestibular system is responsible for balance. The proprioceptive system is responsible for our muscles and joints and how they respond to stimuli. Lastly, the interoceptive system allows us to feel what is happening to our bodies internally. With Sensory Processing Disorder, children can be hypersensitive or hyposensitive meaning the symptoms are felt either “way too much” or “not enough”.
Sensory Processing Disorder is quite complex and affects people in countless ways. There is still a lot of research being done to determine more precise causes of Sensory Processing Disorder, but there are some research pointing ways to heredity and biological factors. Dr. Elysa Marco and her team at the University of California San Francisco have been conducting research studies and found, through Diffusion Tensor Imaging (an advanced MRI) scans and other instruments, that Sensory Processing Disorder does present in a biological manner. The scans displayed abnormalities in the brain when comparing these children to typically developing children.
Children with Sensory Processing Disorder can be affected behaviorally, through self-regulation and emotions, learning, socially, and daily functioning. Often, these children are viewed as “behavioral kids”, when in fact they are not behaviorally problematic they are engaging in a response to stimuli they cannot handle. It can sometimes be thought of as a “flight or fight” experience.
To list all the challenges one can face would be pretty daunting with keeping my answer concise because each individual experiences their challenges differently from another SPD child. Behaviors or symptoms will be displayed as children who avoid situations or who seek them out. Brief examples of such are: covering ears at the sound of hand dryers, hair dryers, vacuums, etc which often result in crying or screaming, may avoid being touched or touches excessively, clothing textures including tags and seams may be painful resulting in daily difficulty of getting dressed with crying or screaming, dislike hair being washed, combed and/or cut, may show little to no reaction or extreme reaction to pain, heat, and/or cold, may like crashing into things such as couches, pillows, and/or people, may appear clumsy, may have poor fine/gross/visual motor, difficulty holding a pencil, may chew on non-food objects, trouble concentrating resulting in learning trouble, may sit in a “W” position, may smell food and/or people, intolerance to sun and other lights, crave fast movement including spinning, have quick and unpredictable meltdowns and emotions, and many other behaviors that impact daily living including learning.
BF 6. You now want to become an advocate for SPD. In what direction do you see yourself going in and has anyone offered assistance in helping you make this come true.
KA 6. I am excited to become an advocate and spread the word about an underrecognized condition that affects so many children in so many different aspects of life. I would like to be able to meet Dr. Elysa Marco from UCSF and Dr. Lucy Jane Miller from the Star Institute and be able to work with them along with countless other advocates to make Sensory Processing Disorder so well-known, recognized, and respected as an actual disorder worthy of its own diagnosis. I have also begun talking to some wonderful people who have offered assistance, such as Senator Nellie Pou and Passaic County Administrator Anthony DeNova, about SPD and its effects on children both academically and personally. I know there are many passionate people out there working towards having SPD recognized and put into the DSM (Diagnostic and Statistical Manual) so these children can be provided the services they need both within a school and therapeutic setting. I want to be part of that team!
BF 7. In addition, you have a new book being released in early 2018 called, Fabulously Sensational- Where Sensation Meets Inspiration. Can you tell us about that and where the name comes from?
KA 7. Fabulously Sensational is a book written from my daughter’s perspective that provides a clear visual of what she is experiencing, how those around here react, and what she wishes her mommy and daddy knew. It takes the reader through a journey of her symptoms surfacing, her parents becoming aware something truly is different, and her parents seeking the help needed. The book concludes with my daughter telling other children she is “there” to help them even if they don’t know each other while asking parents to be patient and give love and trust to “her friend”. For quite some time the notion of writing a book was discussed, but I wasn’t ready. I wasn’t able to think clearly when these symptoms surfaced and even when I learned what she has. I needed time to research it, learn it, and become part of this world I never knew existed. One fall night, my husband and I were watching the television show, “The Good Doctor” which features an extremely brilliant (savant) Autistic doctor who struggles to connect socially with those around him including his colleagues and patients, but is magical at saving lives through his brilliance and unconventional ideas. The first few episodes showed two separate worlds, one with Shaun and one with everyone else. He was viewed differently, wasn’t given the same opportunities for learning and development, and was doubted by almost everyone. Once the awareness grew of his Autism as well as how his savant abilities were an asset rather then a hinder, he was accepted and given opportunities to grow and learn as a surgeon. It was at that moment I connected the lack of awareness with SPD to this show and knew I needed to get global awareness.
BF 8. You said in a previous answer that Senator Pou and a few others have offered assistance to you in spreading the word about SPD to a higher platform. Do you ever see yourself entering the world of politics to possibly even advance the word to a much higher level?
KA 8. If you would have asked me this question 5 years ago I would’ve laughed, but now my answer is different. Seeing how much SPD affects basic functioning each day even with some simplistic activities such as brushing teeth or washing hair coupled with the lack of recognition as an “actual” disorder worthy of its own diagnosis, has opened my eyes to a world of possibilities for these children. One of those possibilities is to work with highly knowledgeable and highly respected individuals who share a similar passion; quality of life for children. These individuals offering assistance are parents and grandparents themselves and are also involved in someway with education whether it be on a local, regional, or state level. They, too, want children to live happy, safe, and prosperous lives and are willing to listen to my story which represents countless other children. If I am able to become a part of their team to advance SPD awareness and bridge my knowledge of education from my teaching background to what I am learning and will continue about SPD then I would be honored.
BF 9. As you might be already aware of, I have spoken to your father about all this and the one thing he expressed to me is that there have been many tense filled moments and tears shed by both you and your husband over what has taken place with Catalina. Can you share a little about that?
KA 9. SPD, as I mentioned earlier, causes challenges with self-regulation and children often exhibit behaviors associated with the inability to properly process stimuli neurologically. These behaviors can be mild whining, groaning, and verbal complaining to extreme screaming, kicking, biting, hitting, running away to escape, and throwing things. Before we knew what, she has, these behaviors were exhibited often and many times for what seemed to be no visible reason. I spoke to a lot of people, but these people did not agree with me that something was wrong, they dismissed it as typical terrible twos and my lack of patience. I remember my husband and I looking at each other one day and I said to him, “if raising kids is this difficult then I don’t know how people have multiple kids. It just can’t be this difficult.” I kept saying it to myself and started to watch other kids her age, do more research, and finally I listened to myself and said, “no it’s this difficult” especially when we had the additional support of my parents to help too. When you feel you are in a world with few people on your side, a child exhibiting behaviors that are not mentioned in parenting books, a job that is very stressful with more and more demands placed but no compensation to provide us the ability to live on our own, not having stellar health yourself but trying to put yourself through graduate school, and then having a daughter who continuously was sick herself with coxsackie, multiple episodes of croup, eczema, and chronic constipation, the situation was dark, lonely, and extremely stressful. I cried with my husband, my parents, her therapists, and even my principal.
BF 10. Can you give some advice on what a parent might do if they suspect that their child might have SPD or possibly early warning signs?
KA 10. The first step is to not ignore what you are thinking! Despite 90% of my “circle” telling me no, I kept saying yes. You know your child and know what seems “off”. I did some research first prior to saying anything. I found this research through the Star Institute in Colorado initially then as I researched more I become immersed with The Child Institute in NYC, Understood.org, Psychology Today, Dr. Elysa Marco at UCSF, and Facebook groups such as The Sensory Spectrum and Sensory Support for Parents. Within weeks I realized, “hey, I am not crazy!”. I then took the evidence to the pediatrician and the director of the therapy place she was receiving speech therapy from and they both felt there was enough to warrant looking into further. Simultaneously, we had an evaluation with a developmental pediatrician and an evaluation with the Occupational Therapist at her speech facility. Occupational therapists strongly believe in SPD and thanks to Dr. Ayres and other OT’s pioneering this work, symptoms a parent experience can be brought to them and if proven through their assessments and the Sensory Profile often given to parents to determine such symptoms and behaviors, SPD can be validated. During the same month, the developmental doctor also agreed that my daughter exhibits sensory processing challenges and would benefit from integrating a knowledgeable team of professionals to work on the multiple deficit areas she examined. Depending on the age of the child, a school evaluation can be conducted although Sensory Processing Disorder is not recognized in the DSM, there are often other co-existing DSM recognized diagnoses such as ADHD and Autism. I strongly recommend becoming your child’s best advocate and voice, doing research, keep notes about behaviors/triggers/successes and challenges, and contacting your pediatrician as primary steps. If the pediatrician is not supportive, then reaching out to a developmental pediatrician and occupational therapist would be your next steps.
BF 11. Where does Kristina Arocho see herself 5 years from now on her new journey?
KA 11. In the next 5 years, I see myself fully immersed in advocating for Sensory Processing Disorder and possibly removed from a classroom environment, so I can reach and have an impact on a far greater number of children. I have contemplated returning to my psychology education roots and possibly becoming a neuropsychologist so that my advocacy can be a full package of support from the wonderful politicians such as Senator Nellie Pou and Passaic County Administrator Anthony DeNova, my unwavering passion and dedication due to my daughter, and then a thorough education and direct access to helping children from a medical perspective while continuing to lobby for SPD to be admitted into the DSM alongside exceptional medical professionals such as Dr. Elysa Marco and Dr. Lucy Jane Miller.
BF 12. We would like to say thank you for taking the time to be with us and if someone out there would like to find out more about you or even possibly ask you a few questions, where can they find you.
KA 12. Thank you very much for allowing me to share my experiences and wishes for all involved in the SPD mission and for those just entering and may be learning about it for the first time today. I can be reached at my website at: www.kristinaarocho.com — My E-Mail: firstname.lastname@example.org on Twitter at: www.twitter.com/kristinaarocho and on Facebook at: www.facebook.com/kristinaarochospd