In Portugal, June 1st is World Children’s Day. The date was created to promote the rights and well-being of all children anywhere in the world, with the aim of their full development. All children should have access to the care, support and opportunities essential for their growth. On this day, it is important to highlight the importance of the rights of children with neurological diseases.
Neurological diseases in pediatric age bring challenges to the daily lives of these children and their families, from daily activities to the need for intensive treatments and participation in educational, social and community activities. Society plays an important role in the lives of these children, through its responsibility in adapting the school environment, whether by using ramps and elevators to make the different playground areas accessible or by using adapted equipment (such as slides and swings), placing signs in Braille, using contrasting colors, selecting inclusive games and activities, providing augmentative and alternative communication devices (tablets and specific applications), creating spaces with sensory toys and areas that provide moments of tranquility. However, an inclusive society essentially depends on the training of professionals in the area of education, not only so that all these resources are used correctly, but also so that all children see their presence in the environment as natural, as well as their use by everyone.
Society also assumes its role in providing comprehensive medical care and in providing full support to caregivers through adjusted income, socioeconomic support and psychosocial support.
It is worth highlighting that a family that is cared for will take better care of its child with a neurological disease. Support from family and friends is important to bring the child to meetings and events and to support care at these times, but also to protect time as a couple, which is so important for caring for relationships and family harmony.
Health professionals who work with these children and their families on a daily basis are part of the social support network. Physiotherapy is part of this network as an integral part of the treatment and rehabilitation of children with neurological diseases. Physiotherapy intervention should be directed at the stages of motor development and focus on improving functions such as the ability to roll over, sit, crawl, stand up and walk, adjusting the objectives to the child’s daily activities and routines.
Intervention plans should be individualized and adjusted to the family’s objectives, based on motor control, promoting stability and mobility, increasing strength, improving balance and motor coordination, providing a better quality of life and increasing independence. It is also the responsibility of physiotherapy to support families in promoting a healthy lifestyle and integrating the child into adapted sports. The involvement and participation of families in physiotherapy sessions is essential for obtaining and maintaining functional gains, as well as for adjusting the plan to the real needs of the family, both in the clinical context and at home.
In short, it is up to all of us, health professionals, educators, friends and family members, to value diversity, develop empathy and understanding, and enhance the autonomy of these children, in any environment they frequent.
Alexandra Saúde, Physiotherapist
CNS – Neurological Campus