Cerebral Palsy

2010 Study - Increased morbidity in severe early intrauterine growth restriction.CONCLUSIONS: Infants born prematurely who are also severely IUGR have higher neonatal morbidity and mortality when compared to infants of similar gestational age. The surviving IUGR infants had less intraventricular hemorrhage and periventricular leukomalacia than less mature infants of comparable birth weight, but a similar incidence of ROP and length of stay. They had a higher incidence of NEC, direct hyperbilirubinemia and chronic lung disease, probably due to end-organ damage in utero from chronic placental insufficiency. These findings highlight the unique pattern of mortality and morbidity seen in infants with severe early IUGR.

Fetal growth restriction and chronic lung disease among infants born before the 28th week of gestation.

Study assessing the comparison of impact on mood, health, and daily living experiences of primary caregivers of walking and non-walking children with cerebral palsy and provided community services support.

CONCLUSION of 2007 study:: According to Antonovsky's concept, the SOC level is established in adulthood and it is relatively stable. These results showed that taking care of a child with CP is a potential source of chronic burden, which may cause a SOC level weakness.

2006 Study ssessing: "Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. RESULTS: Mothers and fathers of children with DD reported high levels of parenting stress, with 84% of mothers' and 67% of fathers' scores falling within the clinical range. Parents of children with DD consistently reported higher levels of parenting stress, weaker SOC, and, for mothers and parents in 2-parent families, poorer health than parents of children without DD. Within families, mothers of children with DD reported poorer health, higher levels of parenting stress, and weaker SOC than their partners. There were no significant differences in reported health, parenting stress, or SOC between parents of children without DD.

Study Abstract: Based on a qualitative research project guided by grounded theory methodology, this article describes parents' participation in home therapy programs recommended by physical and occupational therapists. The study involved in-depth interviews with 8 parents and 4 therapists of children with cerebral palsy. The parents reported that in the initial stages of adjustment to the diagnosis, they were typically overwhelmed by their situation and unable to participate in providing activities at home for their child

American Association of Intellectual and Developmental Disabilities - Since 1876, the American Association on Intellectual and Developmental Disabilities (AAIDD) has been providing worldwide leadership in the field of mental retardation. We're a powerful community of leaders with a strong voice and important mission. AAIDD, (formerly AAMR -- American Association of Mental Retardation) is the oldest and largest interdisciplinary organization of professionals and citizens concerned about intellectual and developmental disabilities.

The Association of University Centers on Disabilities (AUCD) is a membership organization that supports and promotes a national network of university-based interdisciplinary programs. Network members consist of: 67 University Centers for Excellence in Developmental Disabilities (UCEDD), funded by the Administration on Developmental Disabilities (ADD) 39 Leadership Education in Neurodevelopmental Disabilities (LEND) Programs funded by the Maternal and Child Health Bureau (MCHB) 19 Intellectual and Developmental Disability Research Centers (IDDRC), most of which are funded by the Eunice Kennedy Shriver National Institute for Child Health and Development (NICHD)

The Ad Hoc Developmental Disabilities Task Force monitors the Developmental Disabilities Bill of Rights Act and the administration of the program through the Administration on Developmental Disabilities. The Act is authorized every three years and regulations and policy guidelines are developed based on the statute. The Task Force also reviews other developmental disability related issues.

National Disability Rights Network - Protection & Advocacy for Individuals with Disabilities - The National Disability Rights Network (NDRN) has a vision of a society where people with disabilities have equality of opportunity and are able to participate fully in community life by exercising choice and self determination. MISSION NDRN's mission is to promote the integrity and capacity of the P&A and CAP national network and to advocate for the enactment and vigorous enforcement of laws protecting civil and human rights of people with disabilities.

the Parenting stress index as Virginia.edu

The California Evidence-Based Clearninghouse for child welfare - Screening and Assessment Tools for child welfare - Parenting Stress Index (PSI) and Parenting Stress Index-Short Form

PubMed Abstract: Negotiating lay and professional roles in the care of children with complex health care needs. AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.

PubMed 2010 study Abstract assessing the narrative ability in children with cerebral palsy."

PubMed Abstract of 2010 published study assessing the factors associated with bone density in different skeletal regions in children with cerebral palsy of various motor severities.

PubMed Abstract of 1993 Article : Common gait abnormalities of the knee in cerebral palsy

PsychCentral - Stress News - Parental Stress with Special Needs Children

Family Guide - Keeping YOuth Mentally Healthy & Drug Free - Combating Parental Stress

eap.partners.org - Special Needs Children: Working with Professionals - Content provided courtesy of the National Dissemination Center for Children with Disabilities (NICHCY). For more information or to discuss parenting concerns please contact Partners Employee Assistance Program at 1-866-724-4EAP

Parents helping Parents - Practical Solutions that Strengthen Relationships at Home - Special Needs Children for Mom and Dad