Yo, mi proyecto. Crecer hacia dentro y hacia arriba (Spanish Edition)

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Dictionary - Merriam-Webster. America's most useful and respected dictionary. Dictionary - M-W Premium. Many children with CAPD will benefit from auditory training procedures and phonological awareness training.

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Intervention may also involve the identification of and training in the use of strategies that can be used to overcome specific auditory, speech and language, or academic difficulties. A number of actions can be taken to improve the quality of the signal reaching the child. Children can be provided personal assistive-listening devices that should serve to enhance the teacher's voice and reduce the competition of other noises and sounds in the classroom.

Acoustic modifications can be made to the classroom e. Finally, teachers and parents can assist the child in overcoming his or her auditory deficits by speaking clearly, rephrasing information, providing preferential seating, using visual aids to supplement auditory information, and so forth.

The program should be tailored to the child's individual needs, and it should represent an interdisciplinary approach. Parents, teachers, educational specialists, and other professionals, as appropriate, should be involved in the development and implementation of the child's management program.

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Children with CAPD do not have hearing loss if the term is used to refer to a loss of hearing sensitivity. Most children with CAPD have normal hearing sensitivity and their auditory difficulties will not be detected during routine hearing testing unless some of the special "sensitized" tests see discussion above are administered. These children, however, have hearing loss in the sense that they do not process auditory information in a normal fashion. They have auditory deficits that can be every bit as debilitating as unidentified hearing loss.

Children can have both a hearing loss and a CAPD. Fortunately, most children seen for central auditory testing have normal hearing i. However, children with hearing loss can also have a CAPD. In fact, the presence of a hearing loss may place a child at risk for CAPD. This is because the auditory pathways and centers in the brain develop as they are stimulated with sound. The presence of a hearing loss may limit the amount and type of auditory stimulation that is necessary to promote optimal development of the auditory nervous system.

If this happens, then auditory deficits are likely to result. A question frequently asked of audiologists is "whether or not a child with a hearing loss can be tested for CAPD? Interpretation of the test results does become somewhat more difficult for the audiologist who is conducting the testing if a hearing loss is present, but there are distinct patterns of test results that can indicate the presence of a CAPD. Moreover, there are certain tests that the audiologist can use that are not affected to the same degree as other tests by the presence of a hearing loss.

These tests should be used whenever feasible. Unfortunately, there are some individuals with losses so severe that testing cannot be completed. As a general rule, central auditory testing cannot be done if the individual being tested has a hearing loss falling in the severe- to-profound range. The books listed in the reference section are good sources of information. In addition, we have provided a list of web sites that you may find helpful.

Address correspondence to: Jane A. No puedo ni comenzar a explicar como en situaciones sociales esto puede aguadarte la fiesta. Bueno lo admito no es tan poquita. Algunas veces hasta tiene pedacitos de comida. Entre los muchos comentarios que hemos escuchado: "Tu hijo necesita silla de ruedas para moverse" Bien, acepto, ese comentario es algo al que me puedo acostumbrar.

Pensamos que a lo mejor esto ayudaba. Mi esposo y yo nos hicimos bien remilgosos para comprar la ropa de Austin. Algunos hasta le limpiaban la barbilla. Al poco tiempo me di cuenta que en muchos aspectos yo confiaba en El, pero no en este. Austin iba a asistir a otra escuela. Eso era algo bueno. Nos recomendaron al Hospital Scottish Rite en Dallas. Yo estaba emocionada. En el verano de fui a San Antonio para asistir a un seminario de doctores, terapeutas y proveedores de salud. Enseguida hice una cita. Quiero contarle esta historia a tanta gente como sea posible. Dios lo sabe Nunca pierda de vista lo que usted desea.

Que Dios los bendiga. This seemed to me to be the greatest news of all. I could not wait to get to the nearest phone and call my husband to tell him, "No more bandanas! My son Austin is an adorable thirteen-year-old, who has an unfortunate problem Cerebral palsy has a lot to do with his inability to swallow.

I can't even begin to express the social bummer this can be. I could not understand why people just would not look past a little drool. Maybe even sometimes it hung from his lower lip like a long spider web. Sometimes it was mixed with food. Often there was a wide wet spot on his shirt just below his chin. During the winter, we had even seen this area freeze! Not a pleasant situation.

This has been a difficult obstacle to overcome for Austin. Among other obvious things, we heard, "Your child needs to use a wheelchair to get around. Then we heard, "Your child is not going to be able to read normal sized print, drive a car, or develop at the same rate as his peers, or eat, sit, walk or talk, and all that other stuff, at the same rate as his peers. Austin is fortunate in many ways because the other children seemed to be able to deal with all that stuff also.

We've learned to deal with everything but "the drool". So, I decided to buy colored bandanas to coordinate with all his clothes. Maybe this would help. My husband and I became very selective when purchasing clothes for Austin. We would give it "the drool test". We'd hide behind a rack of clothes in the store, and using a spray bottle from my purse, we would add a few drops of moisture to the garment a quick check to see how the garment might look after being worn by Austin for a few moments.

White and black thin cotton always worked best. Still, Austin was asked a million times a day to swallow. Some would go as far as to wipe his chin for him. Others just exclaimed their disgust at his seeming lack of concern. The color-coordinated bandanas didn't seem to make a difference, even the Nike bandanas, the Tommy Hilfiger or Reebok. None of these sports icons seemed to help matters.

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  • I became bitter. The younger children seemed to be more accepting of Austin's problem. I knew that as he got older and moved up in school, this would become more of a social barrier than it had been at a younger age. So, there it began. I was on a mission, a journey, not only in the physical sense but on a spiritual quest as well. I prayed. I read. I took many long walks in the pasture. I attempted to make a deal with God. Some people might say at this point, "She's over the top. I cried, "Lord, this is a mountain that I cannot move. Please help! Our family moved to another city in the summer of ' Austin was going to attend another school.

    This was a good thing. This also meant that I would have the opportunity to find a new team of doctors. Also, there was the hope of new horizons and fresh ideas from this change of venue. We were referred to the Scottish Rite Hospital in Dallas, and we made an appointment with a neurologist. The doctor seemed to have a lot of experience with preadolescent children with cerebral palsy and to appreciate our concerns.

    After the usual barrage of questions and answers, we were handed a prescription of Artane. We were assured this may help with the drooling and sent on our way. I was thrilled. Why had I not heard of this before? I was so grateful and gave many thanks to God. Soon after we started on the Artane, I did notice some improvement. I was very hopeful that this would make a difference for Austin. He started at a new school.

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    The children seemed to love him right away. Even though the Artane helped somewhat, the side effects had us concerned: delayed urination, the feeling of "having to go and not being able to" became a problem. We also noticed that great care had to be taken when our son was exposed to the heat or sun for long periods of a time. He seemed to overheat even on balmy days. His face would become red and blotchy. Ultimately, the side effects continued and so did the drooling.

    The summer of '98, I traveled to San Antonio to attend a seminar for doctors, therapists and healthcare providers. One of the topics was prevention and therapy for people who drool. I spoke to a neurologist there about Austin and our family. I shared where we were in our treatment, and what Austin was experiencing. He discussed the importance of oral simulation with different objects and how speech therapy, posture and cognitive awareness played a big part in oral control.

    He thought we should try another drug therapy called Robinol. I immediately made an appointment to see our neurologist at Scottish Rite Hospital. With notes in hand and much optimism, I shared what I had learned at the seminar. The doctor was familiar with Robinol and discussed the side effects of this drug. We agreed to try it and see what happened. The new drug seemed to help at first and the drooling did appear to slow down. However, side effects were still a problem: overheating, difficulty urinating, fatigue. Austin was in middle school by now.

    The children were less accepting of the drooling and his eating habits. It broke my heart to see this happen. Friendships were being strained at best, and in some instances, friendships lost. I continued searching for "the answer". I searched the Internet. I frequented seminars. I grilled other parents in similar situations. Often I heard, "Let me know what you find; keep us informed. Good luck. I prayed to God to please have mercy; please either open a door or give me a heart of acceptance. Late in the fall of , I was talking to a friend about the Scottish Rite Hospital.

    She asked me if I had been to the Rainbow Clinic there? She had heard about a group of specialists who were preparing to do a clinical study on kids who cannot control saliva flow. I made an appointment. Initially we were referred to the Scottish Rite dental clinic. Everyone was extremely caring and supportive.

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    They told me that Austin might be a candidate for a new device that could help in controlling the saliva flow. This, I felt, was probably too good to be true. But we would try anything at this point. After a brief screening process, it was determined that Austin was indeed a candidate for this mouth appliance. We were cautiously optimistic. An impression was taken of his bite.

    We learned that the appliance would fit somewhat like upper braces, and that it had a small bead attached to the back to stimulate a swallowing reflex. If it did not cause a gag reflex in Austin, this could be what we had been looking for. We returned to the clinic weeks later to try out the mouth appliance. The moment of truth! The doctor inserted the tiny plastic and wire device, and to our relief, Austin had a minimal gag response. Moments later the doctor and I noticed he was swallowing. The drooling stopped almost immediately. I had never seen my son swallow without being told to do so.

    I still find myself staring from time to time in total amazement.

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    The irony of all this is I thought I had looked everywhere for the answer, and here it was in my own backyard. It has been about a month since Austin received his retainer. I had lunch with him at school a few days ago and was delighted to see some new and curious kids hanging around. Today the school bus arrived to pick Austin up for school. I was scurrying about gathering all his school stuff.

    As he was headed out the door in his chair I quickly yelled, "Wait Austin, you forgot your bandanas. I want to share this story with as many people as I possibly can. The happiness on my son's face when he said, "I don't drool anymore" could absolutely launch a thousand rockets to the moon. No words can express how this has made me feel, but more importantly, what this has done for Austin.

    God knows He had his merciful hands all over this, and I am truly thankful. I am also deeply grateful to the team of specialists at the Scottish Rite Hospital. Because of their countless hours of dedicated service to the children and their parents, this unforgettable opportunity is now available to many people in need. We are going camping this Thanksgiving, and we are going to have a big campfire. Austin and I agreed we should toss those bandanas into the fire.

    We laughed and laughed. Austin said, "Nah Never lose sight of what you want. God bless you all. If you would like to contact us personally, we can be reached in the following ways:. En lugar de esto se utiliza un criterio de normas mayores y menores que pueden indicar que el paciente padece de CHARGE.

    Questions that my husband and I began asking more than a decade ago about our daughter Katy's deformities were answered at that seminar. CHARGE is an acronym, with each letter representing the six malformations noted nearly 20 years ago by researchers who were studying the commonalties of specific abnormalities in their patients. The person does not have to have all six or, as was thought prior to , four of the six common problems for a diagnosis of CHARGE to be made.

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    This important point was emphasized during more than one session at the conference, because many health care agencies are still going by the old standards and the syndrome goes undiagnosed. Without a proper diagnosis, certain facts, such as a need to test for growth and sex hormones levels, can go unnoticed and untreated until the youngsters are heading into their teens. A revision of the diagnostic criteria for the syndrome now takes into account that there are several features that are extremely common in CHARGE but very rare in other conditions.

    The cranial nerve dysfunction includes: a lack of smell; facial palsy; sensorineural hearing loss or vestibular problems; and swallowing dysfunction. She was also born with several other problems that appear on the "minor diagnostic criteria" list for CHARGE, features that may occur, but are not consistent enough to be considered major criteria. Katy was born in March of However, the genetics department of our area hospital, apparently still using the pre guidelines in , "poo-pooed" my suggestion, pointing out Katy did not have all, nor even four, of the six abnormalities.

    Instead, they decided she had Treacher Collins Syndrome. After finding a support group for Treacher Collins, I began corresponding and exchanging photographs with other families. It quickly became apparent, to me and my pen pals, that Katy had been misdiagnosed. While we were there I quizzed the doctors about Treacher Collins Syndrome.

    Unfortunately, we had not scheduled an appointment to see a geneticist during that trip, and the doctors we were consulting with were not able to suggest what syndrome she might have. We went home knowing we had been sent down the wrong path by our area hospital. With no new leads, we were back to square one. We had planned to seek out another geneticist closer to home for more tests, when Katy faced yet another round of hospital stays for pneumonia and other problems.

    Getting Katy healthy and keeping her that way was the main focus of our concern. After weathering that crisis, we were in no rush to visit new doctors and have more expensive tests run, knowing that we might walk away with no new information. Without a syndrome to pin Katy's deformities to, we had nothing to guide us on what the future might hold. I resigned myself to being in limbo about my daughter's future. After hearing about the various characteristics of these children she was convinced Katy needed a follow-up exam to determine if she had CHARGE.

    Wanting to learn more, but doubtful that our area hospital would be of any help, I began researching the Internet for information and tried to remain patient until the next CHARGE conference which, happily, was planned for Houston. On July 24, one of the guest speakers, Dr. John Graham, M. With his diagnosis and a two-inch binder full of information in hand, I am confident I can have Treacher Collins Syndrome removed from Katy's health records and replaced with the proper information.

    There is still no answer to the nagging question: Why was she born this way? But studies are being done. They also provided us with a kit to take home so my husband, John, who did not attend the conference, can also supply his blood for the study. Having been in the dark about Katy's condition means we had to face a lot of uncertainty alone - no support groups or case studies describing what we might expect.

    During the conference I learned that many of the problems we faced with Katy, like the seemingly endless rounds of sickness, are common for children with CHARGE during their first two to three years of life. Also prevalent is an inability to walk until age 3, and the need for g-buttons and trachs because of throat problems that cause trouble with eating and breathing.

    I learned that children, like Katy, who survive the first three rocky years, tend to "turn the corner. This point is helping to ease our concerns about what might lie ahead health-wise, thus allowing us to focus on her educational needs and growth as a person. The list of "If we had only known" is quite lengthy, but rather than mourn the past we can now look towards the future with a better idea of what to expect and how to be better prepared to help Katy to flourish into a healthy, productive person.

    Thanks also to Robbie Blaha and Texas Deaf-Blind Outreach for alerting us about the conference, supplying us with all the forms and registration fee to attend. Our address is Myra Lou Ave. Phone: or For more information please contact Marilyn Ogan - Conference Chair :. Una de mis fuentes favoritas es el sitio Family Village. Kennedy Jr. Este Centro ofrece recursos para los incapacitados, sus familias y esos que les proveen servicios y apoyo.

    Los usuarios que usan programas lectores de pantalla lo encuentran muy accesible. Se va a sentir como un experto en menos de lo que se imagina. Frequently, I need to get information about a specific condition or syndrome for myself or for a family I am working with, or I want to find some resource about disability issues.