Know the signs, fight for victory! This is the new tagline for The Marfan Foundation. My daughter, Hadley, and I had the opportunity to attend the annual Marfan conference in Hollywood at the beginning of this month. My daughter is fifteen and has Marfan syndrome (a connective tissue disorder) and has struggled with an enlarged aorta, severe vision problems, scoliosis and the list goes on. It was truly a life changing experience as we found a new “family” and support group. We also benefited from the wealth of information that was provided from some of the most renowned doctors in the country. Most inspiring was watching near strangers unite under one purpose. While Marfan syndrome is what we have been faced with, the number of syndromes, ailments and conditions one can be affected with is daunting. Although the symptoms and affects do vary, all children with special needs can benefit from defining what victory means to them. At the end of the conference, each individual was challenged to do just that. These personal victories varied from physical, emotional to service oriented.    PHYSICAL: There was a darling three-year-old girl I met at the conference who is severely affected with Marfan syndrome. At her young age, she has already suffered through countless surgeries and has many physical challenges. Victory for her means learning to walk. This is so humbling to me because the concerns I have for my daughter seem less severe in comparison. However, my greatest concern for...

Attendees of the Marfan conference find support and pursue victories in physical health, self-love, and raising awareness for the condition.

Know the Signs. Fight for Victory!

A recent article in the press described one couple’s “abortion pact.” That is, if any pregnancy had a chance of a fetal anomaly they would abort. The couple felt that because of their age – she was 37 and he was in his 40s – they had an increased risk of having a child with a disability and they were not prepared to care for such a child. I was going to write an emotionally detached post about this article, because I’ve had a few weeks to calm down from when I first read it. Yeah, right. I cry whenever I think about it.  I was going write about the difficulty in making a decision when you simply don’t know. You don’t know what the future will hold for you or your child. You don’t know if the test is accurate. You don’t know if the science is sound or what medical interventions will come. There are no crystal balls.  I was going to write about the notion of ‘chasing normal’ and how it permeates our society’s quests for perfection. Really, how perfect are you? What if someone decided that you were somehow wrong or ‘damaged.’ Would you still be here?  I was going to write about how this is a reflection of consumer culture and our objectification of people – that we think we can buy perfection and we (as parents) deserve nothing but ‘the best.’ Designer handbag, imported car, designer baby.  I was going...

Article reflects on a couple's choice to abort if a fetus shows anomalies, discussing societal attitudes towards disability and perfection.

Prenatal Testing &#8211; the Abortion Pact

 The Diagnostic Statistical Manual of Mental Disorders is the text for diagnosis the array of mental illnesses. The manual covers everything from an overview to lists of specific symptoms individuals must meet in order to be given a diagnosis by a licensed professional. The publication of the new DSM-5 (the DSM-IV TR, or text revision, is the one in current use) is the most anticipated document in the mental health field.   The DSM-5 makes some significant changes, including diagnostic criteria for:    Autism and other Neurodevelopmental Disorders (intellectual, communication, learning, and motor disorders, and ADHD)   Anxiety Disorders   Depressive Disorders   Obsessive-Compulsive and related disorders   Personality Disorders   Trauma and Stressor-related Disorders (including RAD and PTSD)   Sexual Dysfunction and Gender Dysphoria   Somatic Symptom Disorders    Other areas of the DSM are being revised as well, and it seems like no stone is being left unturned with this new manual. Many people are in support of the revision, but others are very concerned about the changes.   One of the biggest changes of the DSM-5 that causes concern is the revision of the autism definition. The diagnoses of Asperger’s and PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) are being eliminated, and everything will fall under the umbrella of the “Autism Spectrum Disorder.” The New York Times published an article earlier in 2012 about a panel of experts who say many individuals with...

DSM-5 updates diagnosis criteria for mental disorders; includes autism spectrum changes, with public feedback invited until June 2012.

The Future of Diagnosis with DSM-5

 Developmental pediatricians are doctors who specialize in children with developmental or behavioral concerns, or specific developmental disabilities. Developmental pediatricians may provide a “developmental assessment” to help parents understand their child’s challenges, and to provide guidance for a treatment plan. In addition, a developmental pediatrician may help you understand the unique individual differences of your child. When a child has a developmental delay or disability, there are usually several different therapists, teachers, and doctors involved. Often the parent must be the person to coordinate and integrate all of the intervention ideas. Developmental pediatricians may help parents balance priorities for treatment and serve as a team leader among various therapists, or as a consultant to the team. Parents often seek out information and may find multiple opinions about what is best for their child. Developmental pediatricians are often involved in research or training, so they may be valuable resources for information and guidance. Developmental pediatricians are able to take the perspective of the whole child: seeing how health, sleep, diet, motor, cognitive, language, and social-emotional development interact.A developmental perspective means appreciating how all aspects of a child contribute to a child’s ability to function in his or her daily life at home and school. The critical elements of a developmental perspective are the child’s gradually increasing ability to share attention, be curious, engage in warm relationships, initiate and respond in purposeful interactions, problem solve with others, be creative, spontaneous, flexible, and reflective thinkers—not only when feeling happy and cooperative, but also...

Developmental pediatricians specialize in assessing and treating children with developmental issues, guiding therapy and coordination.

Do You Need a Developmental Pediatrician?

My nine-year-old son was diagnosed at age four with selective mutism, a psychological anxiety disorder that is characterized by the sufferer’s inability to speak in certain situations. My son speaks normally at home and some familiar situations, but doesn’t speak in school, around strangers, or around many people that he actually knows well and feels comfortable with. In my previous article (July 15), I talked about my belief that selective mutism is related to autism: they share similar symptoms; neither has a clearly effective treatment; and both have a widely varying “spectrum” of impact in children. Most significantly, both disorders are characterized by a disruption of the child’s ability to engage in appropriate social interaction. What are these disorders caused by, and can they be treated without medication, or even prevented? This month, we’ll begin to explore the factors behind the breakdown of social interaction and look at how you can start searching for answers for your own child. I’ve had the opportunity to meet some of the experts at the forefront of the battle to unravel these kinds of disorders and learned that the place to start looking for answers to disorders in the mind is in the body. First, a basic biology lesson brush-up: Remember that old song from kindergarten: “the ankle bone’s connected to the leg bone, the leg bone’s connected to the thigh bone…” (and on and on)? Everything in the body is connected, and one of the important factors to consider with these disorders is...

Exploring if food allergies, like gluten and casein, contribute to behavior issues in disorders like selective mutism and autism.

Suffering in Silence: Do Food Allergies Play a Role in Selective Mutism?

Developmental pediatricians are doctors who specialize in children with developmental or behavioral concerns, or specific developmental disabilities. Developmental pediatricians may provide a “developmental assessment” to help parents understand their child’s challenges, and to provide guidance for a treatment plan. In addition, a developmental pediatrician may help you understand the unique individual differences of your child. When a child has a developmental delay or disability, there are usually several different therapists, teachers, and doctors involved. Often the parent must be the person to coordinate and integrate all of the intervention ideas. Developmental pediatricians may help parents balance priorities for treatment and serve as a team leader among various therapists, or as a consultant to the team. Parents often seek out information and may find multiple opinions about what is best for their child. Developmental pediatricians are often involved in research or training, so they may be valuable resources for information and guidance. Developmental pediatricians are able to take the perspective of the whole child: seeing how health, sleep, diet, motor, cognitive, language, and social-emotional development interact. A developmental perspective means appreciating how all aspects of a child contribute to a child’s ability to function in his or her daily life at home and school. The critical elements of a developmental perspective are the child’s gradually increasing ability to share attention, be curious, engage in warm relationships, initiate and respond in purposeful interactions, problem solve with others, be creative, spontaneous, flexible, and reflective thinkers—not only when feeling happy and cooperative, but also...

Developmental pediatricians specialize in helping children with developmental issues and may coordinate care among various therapists.

Do You Need A Developmental Pediatrician?

 Researcher Dennis Wall at Harvard Medical School says he can diagnose autism in a matter of minutes.    Any parents who have gone through a diagnosis of autism for their child know that it is a lengthy and complicated process. With the number of cases of autism at an estimated 1 in 88 (an increase from 1 in 110), researchers and doctors are finding a need to diagnose it earlier and quicker.   Wall’s tool utilizes seven online questions and a short home video of the child. Other diagnostic tools include the Autism Diagnostic Observation Schedule (ADOS), which investigates social interaction and language, and the Autism Diagnostic Interview, Revised (ADI-R), which includes no less than 93 questions. These tools can take hours, so Wall’s proposal of a tool that takes only a few minutes is quite startling and receiving a great deal of skepticism amongst the research and autism community.   Wall’s assessment can be taken at home, and the child would not even have to see a clinician. The two- to five-minute video of the child playing in his home environment, along with the answers to seven questions completed online, is evaluated by a trained analyst. The analyst then answers eight additional questions and is able to provide a diagnosis.   Wall compared his results to over 2,700 ADI-R tests, and he found the accuracy of his tool stacks up well against the other assessments. Wall says he wants every family to have...

Dennis Wall developed a rapid autism diagnosis tool using a video and seven questions, raising skepticism among experts.

Autism Diagnosis in Minutes

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Special Needs
Articles

Know the Signs. Fight for Victory!

Prenatal Testing – the Abortion Pact

The Future of Diagnosis with DSM-5

Do You Need a Developmental Pediatrician?

Suffering in Silence: Do Food Allergies Play a Role in Selective Mutism?

Do You Need A Developmental Pediatrician?

Autism Diagnosis in Minutes

Find Providers Near You

Special Needs Articles

Know the Signs. Fight for Victory!

Prenatal Testing &#8211; the Abortion Pact

The Future of Diagnosis with DSM-5

Do You Need a Developmental Pediatrician?

Suffering in Silence: Do Food Allergies Play a Role in Selective Mutism?

Do You Need A Developmental Pediatrician?

Autism Diagnosis in Minutes

Find Providers Near You

Special Needs
Articles

Prenatal Testing – the Abortion Pact