Carolina Reyes ENG102: 71715 Dec 16, 2012 A Special Kind of Love When a woman is pregnant, it does not

matter if the baby will be a rambunctious boy or a vivacious girl, what matters is that the stork delivers a healthy bundle of joy. I gave birth to three children and the first thing I did when I met each and every one was count all of their fingers and toes to make sure they had ten of each. Every time I was blessed to meet the most important people that would ever enter my life was unique, unforgettable and to put it mildly, heavenly. Words do not give justice to those feelings and never will. The clich of love at first sight became meaningful to me. When I laid eyes on my loves for the first time, I was completely and utterly consumed with the feeling of unconditional love. That feeling did not lose intensity from my first born to my last and third love. When my third love, Gabriel Alexander Reyes was born on July 25, 2008 at 2:15am at the Naval Hospital on Camp Lejeune, North Carolina, my husband Ricardo and I would have never imagined that we would embark on a journey that required a different kind of patience, perseverance and hope. A special kind of love was also born on that day and later we would find out that our perfect, precious son would battle a speech delay. This journey is not only being traveled by Gabe, my husband Ricardo and I but also by our ten-year-old son Matthew and eight-year-old daughter Maya. I am thankful that we have stuck together and gifted each other with the utmost support. It all began when Gabriel was 5 months old in December 2008 and started getting ear infections. As

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a mother, I realize how important it is to take children to the doctor when due to an ear infection. I have also always known when my kids suffered from one when symptoms started appearing. Therefore, my kids always went to the doctor in those cases. I took them to rid them of the pain not realizing that ear infections also had the potential to impede on a childs speech development. The fear of my children building a resistance to antibiotics has always existed and came true with my Gabriel. From the time he was 5 months old to 18 months old, Gabriel had had over 10 ear infections. This meant that with every ear infection, the dose was increased and the type of antibiotic was alternated. While Ricardo and I kept wondering why the antibiotics were failing to rid him of the ear infections, his speech was becoming an issue. At that point, we still had not made the connection between the two. The trust we had in the doctors at the pediatric clinic was quickly disappearing. When he was 15 months old, I asked his doctor if it would be a good idea to see an ENT (Ear Nose Throat Specialist) and she told me she would give me a referral 2 weeks later. She moved to another office and the new doctor did not follow her instructions. I fully understand that children reach milestones at different ages but it was becoming difficult not to compare his lack of speech to other children his age. My other two children were speaking in two to three word combinations by the time they were 1215 months old and Gabe still had a hard time even saying ma-ma and da-da. My husband and I would have late night conversations about reasons why he was not talking. Discussions and disagreements arose because it was scary to think that our son had a disability or disorder. Our biggest nightmare as parents was within our reach and

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it was terrifying. I started wondering what I did during my pregnancy that would do this to him. I was secretly blaming myself even though I knew I was healthy. I started doing the worse thing a parent can do and turned to Google for answers. A heartbreaking conversation with my husband included the possibility of autism even though he did not have all of the same symptoms. I was in denial that it could be any disorder or disability of that sort. We faced many struggles with Gabriel during this time and in fact, his entire life in terms of communication. We would call his name and he would not respond that lead us to think he was ignoring us on purpose. At times, I thought he was just being a kid or rude but little did we know that he was in his own world because later it would be discovered that he always had fluid in his ears that kept him from hearing. Due to the constant ear infections, he was experiencing temporary hearing loss. The doctors compared it the feeling of having water in your ears or hearing as if wearing earmuffs. All he was hearing, if anything, were mumbled language as if under water. My heart broke when we found out Gabriel had been struggling to hear us the entire time and it was even possible it started when he was 5 months old. Many instances ran through my head and it all began to make sense. It was no wonder he could not tell me what he wanted using words. When I asked him he would take us by our hand and walk us over to show us. Gabriels older siblings, Matt and Maya, played important roles in his life. They helped us figure out what he needed or wanted, played with him, and most importantly provided my husband and I with a support system in doing so. To this day, sometimes Matt and Maya are the only ones that understand what Gabriel is saying. There were

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instances when we would call Matt over to help us figure out what was wrong with Gabriel. He took to his big brother and sister for protection in social settings like parties or parks. In a sense, they provided him with a comfort zone he needed due to his speech delay. Gabriel was very independent when it came to playing unless he played with his brother and sister or cousins. He was not very social at daycare and did not have friends nor did he care to make any. We then realized it was due to the language barrier. He had decided not to engage with them because he probably figured it would be laborious to attempt communication. Behavioral issues were beginning to present themselves and Gabe would resort to biting at daycare when he became frustrated due to the absence of language to express himself. I would cry to my husband because we were at the end of our ropes and did not know what else to do. Finally in March 2010 when Gabe was 18 months old at yet another appointment, I had had enough with the doctors telling me wait 2 weeks to monitor him and lets see how this antibiotic at this dose works---I was done. A feeling of frustration consumed me because I thought to myself, This doctor is taking my sons health too lightly! He just does not care! So, I firmly gave the doctor an ultimatum; I was either walking out of that office with Gabriels medical records or a referral to an ENT. The doctor was shocked at my demeanor and in that moment in time, I was in charge of my sons health and had made an executive decision. He bowed his head and wrote me a referral and gave me a history of Gabes ear infections. As a parent, I exercised my God given right that was bestowed to me when I was pregnant with him to be his advocate and speak on his behalf. In fact, I believe that this right is not exercised enough. There

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are times in a childs life when he or she cannot defend him or herself and that is exactly when titles like Dr. are tossed out the window. In our case, we gave those doctors several chances to treat our son and they failed. I took matters into my own hands and proceeded to getting my son the healthcare he deserved. While I was waiting for the appointment to see the specialist, I set up a home meeting with a state program called Arizona Early Intervention Program (AzEIP) that provides support to families with children that have developmental delays and disabilities with resources and developing a plan of action for the child. The program was referred to me by his pediatrician and daycare director. My family coordinator along with a speech therapist and developmental specialist came to our home and assessed Gabriel. It was determined that he had a speech delay and because of his absence of speech, was coupled with a developmental delay in regards to cognitive skills as well as mild behavioral issues. The program is for children ages 0 to 3 and funded by the state. Even though we had insurance, it was never billed. One week later, my son was seen by an ENT who was concerned when I revealed Gabes ear infection history. I knew that he would want to perform the ear tube surgery right away. The ear tube surgery (myringotomy) is performed on children that have recurrent ear infections or fluid build up in the eardrums both of which applied to Gabe. The surgery consists of a tiny incision in the ear drum which rids the child of any pressure, removal of any build up or secretion and followed by the insertion of miniscule plastic tubes (tympanostomy tube) to allow for aeration of the middle ear (Cunha, 2012). These tubes will ensure the prevention of fluid build up in Gabes canals and eardrums virtually killing the chance of future ear infections. The specialist advised me that a child

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should get the ear tube surgery if he/she has 4 infections in one year. I was infuriated that his pediatrician never cared and allowed my son to endure over a dozen ear infections during the most crucial time in the speech development of a child. A child learns specific sounds of letters at certain age ranges and Gabriel had missed it all. He had the speech of a 6-month-old infant for being 1 years old. The specialist moved his schedule around because he knew how upset I was that Gabriel should have had the surgery a lot sooner. A week after the initial appointment, the day of the surgery arrived and I could not have been more excited. Our baby would finally hear us! He would be relieved of all the pressure in his little eardrums and be free of pain. I had done research prior to the surgery and got feedback from people whose children had had ear tube surgery. I was told that because he would finally be able to hear, his personality would change. The speech and developmental specialists advised me that his hearing would be hypersensitive which meant that we would have to be very careful and choose our tone and volume carefully with him, especially right after the surgery. They were right. It was a bittersweet moment to see my third love in a hospital gown with little dinosaurs on it but I knew the surgery was for the best. The nurses were absolutely wonderful in keeping me updated and letting me know that my baby was in good hands. It was a 15-minute outpatient procedure and one hour later he was awake. The anesthesia had made him extremely irritable and it took everything for me to restrain him from getting off the bed. I gave the nurse the okay to walk away and let me ease him. He was kicking and screaming but I cradled him in my arms and he calmed down as I whispered that everything would be okay.

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Two weeks later, he had a hearing test at Phoenix Childrens Hospital and passed with 100%! From the day I gave the pediatrician the ultimatum, that got the ball rolling, to the day of the hearing test, three weeks had passed. It made me wish I had acted sooner but I was happy that my son had passed the hearing test with flying colors. The audiologist told me that he would have failed the test if it were not for the surgery. One of the fears that we had was permanent hearing loss but thankfully, he did not have any. The road to recouping for lost time in regards to his speech development had begun and by the following week, he started seeing a developmental specialist and a speech therapist through AzEIP every week that would last until he turned 3. Throughout the whole process, I was working full-time and grateful that my boss allowed me the time off I needed when it came to taking care of Gabriel. It was the toughest time in our lives because it felt like a bulldozer hit us in such a short period of time. In essence, that bulldozer was preparing us to be the parents of a special needs child. It was preparing Matt and Maya to be siblings of a special needs little boy. Many things Gabe did in the past were brought to light and all of a sudden, they made sense. We finally knew why Gabe was so independent at play, why his laugh as a baby was silent, why he resorted to biting to express his frustration, and why he was not talking like the other children his age were. The art of speech helps make connections for people such as being able to tell someone you love them. Those words meant nothing to Gabe because he could not hear them. Instead, we showed him with hugs, kisses, bath times, and bedtimes. With the help of his speech therapy, he was beginning to use sign language as a bridge to speaking. He started to engage with us a lot more than before. He even began to

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cuddle with me. He was beginning to open up to us and feel more comfortable. He still possessed a certain degree of shyness directly tied to his speech delay but it was completely understandable. Needless to say, Gabriel never saw that pediatrician ever again and continued with AzEIP until he turned 3 years old. He received speech therapy and aid from the developmental specialist weekly from which he needed little help from as time progressed. There were many times I wanted to quit my job and be completely available for Gabe to get his therapy but the therapist and daycare director worked closely with us for accommodations to see him while I was at work at times. We were blessed for AzEIP even though we did have insurance. The program assessed Gabriel before his third birthday in July 2011 and forwarded the results to our school district with the diagnosis of developmental speech delay. Therefore, he was a perfect candidate for the 3-year-old Special Needs Preschool (SNP) program at Lookout Mountain Elementary School. The program is aimed to help children with disabilities and special needs to prepare them for the 4-year-old preschool class, whether it would be Special Needs or a regular class, by providing a small teacher-student ratio, speech therapists as well as developmental specialists and periodical assessments throughout the year setting goals on a regular basis. Gabriel was assessed at the end of the 3-year-old SNP program in May 2012 and was recommended to be in the 4-year-old SNP program versus a regular preschool class and we were content with that decision. We were aware that Gabe still needed the extra therapy and attention. We had a parent teacher conference in October of this year and his teacher and therapist advised that the assessment at the end of this school

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would determine if Gabe will move on to a regular kindergarten class or a Cross Category kindergarten class with a smaller teacher-student ratio as well as speech therapy. To this cold December day in 2012, I am happy with my decision in giving that doctor an ultimatum. I hope that one day it will make Gabriel proud to know that I acted as his advocate and accomplished so much in those 3 weeks of his life when he needed me the most. Being a mother is a job that is not to be taken lightly, and by the same token, neither should the job of a doctor. There is a lot responsibility attached to a doctors job because, if neglected, can cause a ripple in a childs life. Thanks to all of the speech therapy and amazing preschool teachers, Gabriel is quite the chatterbox! I thought the day would never come that I would actually say that but thankfully, I can. He is speaking in sentences, talks about his feelings, and is even starting to write his own name. He is beginning to count and recognize letters. Needless to say his favorite letter is G. I decided to write about this journey my husband and children have taken with Gabriel because I believe that it is important that people understand that children need advocates when those responsible for providing their healthcare are failing at their job. That also goes for any situation, even at school. Parents need to realize that it is okay to disagree with their childrens doctors and use their God given right to speak on their behalf. God knows how long that doctor would have waited to give me that referral to the ENT if I would not have demanded it. I have read about parents in forums who waited too long to get their children the help they needed because they did not know any better.

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At times, I still feel guilty for not acting a few months sooner but I was in denial. It is the most sensitive subject to parents but if we do not act on their behalf, who will? I thank God everyday for blessing my husband and two older children with the opportunity to have a special kind of love like no other for Gabriel. Next to being Matt and Mayas mom, being Gabriels mom has definitely tested by patience and parental experience. I would not change my Gabriel or this journey for anything in the world. When hes not looking, I see him and see a fighter. I see a child who has fought and persevered everyday of his God willing life to be where he is in his developmental stage to have overcome every obstacle placed in his path. For that, I love him more and more everyday.

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Works Cited Cunha, J. P. (2012, December 16). Ear tubes (myringotomy & tympanostomy tubes). Retrieved from http://www.medicinenet.com/ear_tubes/article.htm

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