bibic is a small charitable organization based in the United Kingdom that supports children, young people and their families who have a wide range of different conditions. The charity was founded by the late Keith Pennock who had a daughter with a learning disability. The work was derived from Glenn Doman's The Institutes for The Achievement of Human Potential (IAHP) in Philadelphia, USA.
Many of the children they work with have disorders of the nervous system, or inherited characteristics, which affect the way the body or brain develops. These include: acquired and traumatic brain injury, Down syndrome, cerebral palsy, autism, Specific developmental disorders, attention deficit hyperactivity disorder and learning disability including dyslexia, developmental coordination disorder and dyscalculia. Unlike many other organisations, bibic also works with children that have no formal diagnosis at all. [1]
A variety of therapeutic approaches are used. There is no peer reviewed research into the effectiveness of therapy for this condition. [2]
The organisation raises funds and receives no Government funding.
The charities National Assessment Centre is based at Old Kelways, just outside the town of Langport, in Somerset. [3]
Keith Pennock's book Rescuing brain injured children [4] describes the impetus for starting the organisation as his daughter, who had developmental delay. In 1970 the family travelled from the UK to Philadelphia and attended the IAHP. The family adopted the Doman-Delecato patterning technique in the UK. A precursor to bibic (BIAHP) was opened in Staffordshire later the same year, as news spread of the family and their use of the new therapy method. Local residents began to give donations and offer their time. [4] The British Institute for the Achievement of Human Potential (BIAHP) was established in 1974, with staff being trained directly at the IAHP in Philadelphia. The family and fledgeling organisation moved to Knowle Hall near Bridgwater, Somerset in 1976.
In 1979, the IAHP (under the management of Glenn Doman) were turning their interests to "well children" with the introduction of a Better Babies programme. The board of the BIAHP felt that they could not support this shift in focus and wanted to continue their work solely with children who had a brain injury, therefore through necessity the British Institute of Brain Injured Children was launched as an independent organisation in 1980 – no links with the IAHP were retained, and staff began to be trained in the UK. In 1987 a research piece was commissioned to demonstrate the effectiveness of the programme, [5] in association with the University of Surrey.
Keith Pennock resigned from his post as chief executive of BIBIC in early 1996. In 1999, research covering the period 1995-1997 at BIBIC was published. [6] In a letter to the [journal] editor, [7] the authors of the appraisal report noted that strong similarities to the Doman-Delecato Patterning method (a therapy by this point widely condemned) [8] [9] remained strong despite BIBIC making revisions, and that areas of the therapy caused concern. BIBIC responded later that year, [10] informing the journal that significant changes had been made to the programme, with the appraisal report being a much-anticipated catalyst for doing so. Since these revisions and under new management the organisation has been registered as a charity, and is now known only as "bibic". Bibic remains an active organisation and also provides policy input.
Bibic now reports to base its programme of developmental therapy on more recent research [11] based on the concept of neuroplasticity, the brain's ability to undergo alterations in response to internal and external environmental changes. Bibic moved to Langport in Somerset, in 2014. [12]
Cerebral palsy (CP) is a group of movement disorders that appear in early childhood. Signs and symptoms vary among people and over time, but include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, and speech. Often, babies with cerebral palsy do not roll over, sit, crawl or walk as early as other children. Other symptoms may include seizures and problems with thinking or reasoning. While symptoms may get more noticeable over the first years of life, underlying problems do not worsen over time.
Speech disorders, impairments, or impediments, are a type of communication disorder in which normal speech is disrupted. This can mean fluency disorders like stuttering, cluttering or lisps. Someone who is unable to speak due to a speech disorder is considered mute. Speech skills are vital to social relationships and learning, and delays or disorders that relate to developing these skills can impact individuals function. For many children and adolescents, this can present as issues with academics. Speech disorders affect roughly 11.5% of the US population, and 5% of the primary school population. Speech is a complex process that requires precise timing, nerve and muscle control, and as a result is susceptible to impairments. A person who has a stroke, an accident or birth defect may have speech and language problems.
Developmental disorders comprise a group of psychiatric conditions originating in childhood that involve serious impairment in different areas. There are several ways of using this term. The most narrow concept is used in the category "Specific Disorders of Psychological Development" in the ICD-10. These disorders comprise developmental language disorder, learning disorders, developmental coordination disorders, and autism spectrum disorders (ASD). In broader definitions, attention deficit hyperactivity disorder (ADHD) is included, and the term used is neurodevelopmental disorders. Yet others include antisocial behavior and schizophrenia that begins in childhood and continues through life. However, these two latter conditions are not as stable as the other developmental disorders, and there is not the same evidence of a shared genetic liability.
Childhood disintegrative disorder (CDD), also known as Heller's syndrome and disintegrative psychosis, is a rare condition characterized by late onset of developmental delays—or severe and sudden reversals—in language, social engagement, bowel and bladder, play and motor skills. Researchers have not been successful in finding a cause for the disorder. CDD has some similarities to autism and is sometimes considered a low-functioning form of it. In May 2013, CDD, along with other sub-types of PDD, was fused into a single diagnostic term called "autism spectrum disorder" under the new DSM-5 manual.
Hypotonia is a state of low muscle tone, often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength. Hypotonia is a lack of resistance to passive movement, whereas muscle weakness results in impaired active movement. Central hypotonia originates from the central nervous system, while peripheral hypotonia is related to problems within the spinal cord, peripheral nerves and/or skeletal muscles. Severe hypotonia in infancy is commonly known as floppy baby syndrome. Recognizing hypotonia, even in early infancy, is usually relatively straightforward, but diagnosing the underlying cause can be difficult and often unsuccessful. The long-term effects of hypotonia on a child's development and later life depend primarily on the severity of the muscle weakness and the nature of the cause. Some disorders have a specific treatment but the principal treatment for most hypotonia of idiopathic or neurologic cause is physical therapy and/or occupational therapy for remediation.
The Bobath concept is an approach to neurological rehabilitation that is applied in patient assessment and treatment. The goal of applying the Bobath concept is to promote motor learning for efficient motor control in various environments, thereby improving participation and function. This is done through specific patient handling skills to guide patients through the initiation and completing of intended tasks. This approach to neurological rehabilitation is multidisciplinary, primarily involving physiotherapists, occupational therapists, and speech and language therapists. In the United States, the Bobath concept is also known as 'neuro-developmental treatment' (NDT).
The UC Davis MIND Institute is a research and treatment center affiliated with the University of California, Davis, with facilities located on the UC Davis Medical Center campus in Sacramento, California. The institute is a consortium of scientists, educators, physicians and parents dedicated to researching the causes of and treatments for autism spectrum disorders, fragile X syndrome, and other neurodevelopmental disorders. The director of the MIND institute is Dr. Leonard Abbeduto.
Sturge–Weber syndrome, sometimes referred to as encephalotrigeminal angiomatosis, is a rare congenital neurological and skin disorder. It is one of the phakomatoses and is often associated with port-wine stains of the face, glaucoma, seizures, intellectual disability, and ipsilateral leptomeningeal angioma. Sturge–Weber syndrome can be classified into three different types. Type 1 includes facial and leptomeningeal angiomas as well as the possibility of glaucoma or choroidal lesions. Normally, only one side of the brain is affected. This type is the most common. Type 2 involvement includes a facial angioma with a possibility of glaucoma developing. There is no evidence of brain involvement. Symptoms can show at any time beyond the initial diagnosis of the facial angioma. The symptoms can include glaucoma, cerebral blood flow abnormalities and headaches. More research is needed on this type of Sturge–Weber syndrome. Type 3 has leptomeningeal angioma involvement exclusively. The facial angioma is absent and glaucoma rarely occurs. This type is only diagnosed via brain scan.
Language disorders or language impairments are disorders that involve the processing of linguistic information. Problems that may be experienced can involve grammar, semantics (meaning), or other aspects of language. These problems may be receptive, expressive, or a combination of both. Examples include specific language impairment, better defined as developmental language disorder, or DLD, and aphasia, among others. Language disorders can affect both spoken and written language, and can also affect sign language; typically, all forms of language will be impaired.
The Institutes for The Achievement of Human Potential (IAHP), founded in 1955 by Glenn Doman and Carl Delacato, provide literature on and teaches a controversial patterning therapy, known as motor learning, which the Institutes promote as improving the "neurologic organization" of "brain injured" and mentally impaired children through a variety of programs, including diet and exercise. The Institutes also provides extensive early-learning programs for "well" children, including programs focused on reading, mathematics, language, and physical fitness. It is headquartered in Philadelphia, with offices and programs offered in several other countries.
Speech–language pathology is a healthcare and academic discipline concerning the evaluation, treatment, and prevention of communication disorders, including expressive and mixed receptive-expressive language disorders, voice disorders, speech sound disorders, speech disfluency, pragmatic language impairments, and social communication difficulties, as well as swallowing disorders across the lifespan. It is an allied health profession regulated by professional bodies including the American Speech-Language-Hearing Association (ASHA) and Speech Pathology Australia. The field of speech-language pathology is practiced by a clinician known as a speech-language pathologist (SLP) or a speech and language therapist (SLT). SLPs also play an important role in the screening, diagnosis, and treatment of autism spectrum disorder (ASD), often in collaboration with pediatricians and psychologists.
Developmental coordination disorder (DCD), also known as developmental motor coordination disorder, developmental dyspraxia or simply dyspraxia, is a neurodevelopmental disorder characterized by impaired coordination of physical movements as a result of brain messages not being accurately transmitted to the body. Deficits in fine or gross motor skills movements interfere with activities of daily living. It is often described as disorder in skill acquisition, where the learning and execution of coordinated motor skills is substantially below that expected given the individual's chronological age. Difficulties may present as clumsiness, slowness and inaccuracy of performance of motor skills. It is often accompanied by difficulty with organisation and/or problems with attention, working memory and time management.
Classic autism, also known as childhood autism, autistic disorder, (early) infantile autism, infantile psychosis, Kanner's autism, Kanner's syndrome, or (formerly) just autism, is a neurodevelopmental condition first described by Leo Kanner in 1943. It is characterized by atypical and impaired development in social interaction and communication as well as restricted, repetitive behaviors, activities, and interests. These symptoms first appear in early childhood and persist throughout life.
The Kennedy Krieger Institute is a nonprofit, 501(c)(3) tax-exempt, Johns Hopkins affiliate located in Baltimore, Maryland, that provides in-patient and out-patient medical care, community services, and school-based programs for children and adolescents with learning disabilities, as well as disorders of the brain, spinal cord, and musculoskeletal system. The Institute provides services for children with developmental concerns mild to severe and is involved in research of various disorders, including new interventions and earlier diagnosis.
Over time, the approach to cerebral palsy management has shifted away from narrow attempts to fix individual physical problems – such as spasticity in a particular limb – to making such treatments part of a larger goal of maximizing the person's independence and community engagement. Much of childhood therapy is aimed at improving gait and walking. Approximately 60% of people with CP are able to walk independently or with aids at adulthood. However, the evidence base for the effectiveness of intervention programs reflecting the philosophy of independence has not yet caught up: effective interventions for body structures and functions have a strong evidence base, but evidence is lacking for effective interventions targeted toward participation, environment, or personal factors. There is also no good evidence to show that an intervention that is effective at the body-specific level will result in an improvement at the activity level, or vice versa. Although such cross-over benefit might happen, not enough high-quality studies have been done to demonstrate it.
Dyskinetic cerebral palsy (DCP) is a subtype of cerebral palsy (CP) and is characterized by impaired muscle tone regulation, coordination and movement control. Dystonia and choreoathetosis are the two most dominant movement disorders in patients with DCP.
Restorative neurology is a branch of neurology dedicated to improving functions of the impaired nervous system through selective structural or functional modification of abnormal neurocontrol according to underlying mechanisms and clinically unrecognized residual functions. When impaired, the body naturally reconstructs new neurological pathways and redirects activity. The field of restorative neurology works to accentuate these new pathways and primarily focuses on the theory of the plasticity of an impaired nervous system. Its main goal is to take a broken down and disordered nervous system and return it to a state of normal function. Certain treatment strategies are used to augment instead of fully replace any performance of surviving and also improving the potential of motor neuron functions. This rehabilitation of motor neurons allows patients a therapeutic approach to recovery opposed to physical structural reconstruction. It is applied in a wide range of disorders of the nervous system, including upper motor neuron dysfunctions like spinal cord injury, cerebral palsy, multiple sclerosis and acquired brain injury including stroke, and neuromuscular diseases as well as for control of pain and spasticity. Instead of applying a reconstructive neurobiological approach, i.e. structural modifications, restorative neurology relies on improving residual function. While subspecialties like neurosurgery and pharmacology exist and are useful in diagnosing and treating conditions of the nervous system, restorative neurology takes a pathophysiological approach. Instead of heavily relying on neurochemistry or perhaps an anatomical discipline, restorative neurology encompasses many fields and blends them together.
Sensory processing disorder is a condition in which multisensory input is not adequately processed in order to provide appropriate responses to the demands of the environment. Sensory processing disorder is present in many people with dyspraxia, autism spectrum disorder and attention deficit hyperactivity disorder (ADHD). Individuals with SPD may inadequately process visual, auditory, olfactory (smell), gustatory (taste), tactile (touch), vestibular (balance), proprioception, and interoception sensory stimuli.
Diane Louise Damiano is an American biomedical scientist and physical therapist specializing in physical medicine and rehabilitation approaches in children with cerebral palsy. She is chief of the functional and applied biomechanics section at the National Institutes of Health Clinical Center. Damiano has served as president of the Clinical Gait and Movement Analysis Society and the American Academy for Cerebral Palsy and Developmental Medicine.
Timothy Brei is a professor of neurodevelopmental pediatrics at the University of Washington and a developmental pediatrician at Seattle Children's Hospital. He is also the medical director of the Spina Bifida Association of America. Brei's research has focused on healthcare outcomes for children with spina bifida and as an adult with spina bifida who is an uncommon leader, he has also served as an advocate.
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