More mobility for children and adolescents

Cerebral palsy (CP) refers to movement disorders that occur as a result of early childhood (infantile) brain damage. The condition is not only the most common sensorimotor disability in childhood, it also has many faces and its course is very individual.

Cerebral palsy is caused by damage to the brain or central nervous system at an early stage of child development, i.e. at an immature, not fully developed stage. Usually, the damage occurs shortly before, during or shortly after birth. Since the immature brain or nervous system is affected, there are often no clear signs of CP in the newborn.

Abnormalities in physical development are usually not apparent until the first few months of life, e.g., reduced muscle strength. Later on, further symptoms may be:

• basic tension in the muscles (muscle tone) too low or too high–often resulting in spasticity

• one-sided posture

• reduced hand-hand and hand-mouth contact

• delays in turning to the prone and supine position, in sitting as well as in crawling

• restricted use of the hand and arm

A clear diagnosis can often only be made during the course or after the 1st year of life.

Once the diagnosis has been made, it is important to develop a medical care strategy as quickly as possible. On the one hand, this will be based on the severity of the disease and, on the other hand, be adapted to the child’s individual needs, since the children affected have varying levels of impairment in their gross motor skills (e.g. sitting and walking) and manual skills (e.g. grasping).

The course of cerebral palsy is very individual, so its treatment or medical care must also focus on the individual patient. CP indeed manifests itself in early childhood but is not a "childhood disease". It causes delays in sensorimotor development, which have far-reaching consequences in terms of the physical and mental abilities of the child and later adult. This poses new challenges for practitioners and caregivers, because patients have different needs at each stage of life. These needs are very diverse, so there is no pattern covering all patients. In CP, the exception is rather the rule.

On average, brittle bone disease affects 1 in about 20,000 births. Osteogenesis imperfecta is a rare genetic disorder of bone metabolism that causes bone instability. In those affected, the body is unable to produce a certain collagen or can only produce it in poor quality. Without collagen, elasticity and stability in the bone mass is insufficient. Walking and standing are impossible for most of the patients. They are permanently dependent on protective mobility aids, e.g. wheelchairs for children and rehab strollers.

Muscular dystrophies (MD) are a group of muscle diseases occurring worldwide with an average incidence of about 1 in 3,500,000 inhabitants. These inherited genetic conditions are caused by mutations in the genetic material, which usually lead to defects or deficiencies in proteins found in the muscles. The most common cause of muscular dystrophy in childhood and adolescence is a lack of or change in the function of the muscle protein dystrophin. Experts speak of Duchenne muscular dystrophy (DMD), in which the skeletal, diaphragmatic and cardiac muscles are degraded. It is a progressive disease, which, depending on the age of the child, manifests itself in different physical and mental developmental disturbances.

Similar to cerebral palsy, children with muscular dystrophy need early and individually adapted care. On the one hand, symptoms should be relieved; on the other hand, mobility and independence should be maintained and promoted. Orthopedic mobility aids such as orthotics, sitting and standing aids, wheelchairs and rehabilitation strollers are essential here.

Spina bifida is a very rare congenital malformation of the spinal cord and spine. It is caused by the failure of the neural tube (prestage of the spine in the embryo) to close properly during the 3rd and 4th weeks of pregnancy. In Central Europe, about 1 in 1,000 children is born with spina bifida.

Two forms are distinguished: In the open form (myelomeningocele or open spina bifida), the vertebral arch is split. Parts of the spinal cord skin and the spinal cord then visibly bulge to the outside like a sac. The closed form (spina bifida occulta) is usually discovered by chance and asymptomatic at first in most cases. Depending on the extent of nerve damage and on the affected part of the spinal column, sensory and movement disorders and even paraplegia may be the consequence.

To enable standing and walking, physiotherapy, orthopedic mobility aids, rehabilitation aids and surgery to correct the condition are important pillars in the treatment of spina bifida. Not only do they ensure that children with spina bifida are able to move better, they also increase their life expectancy and improve their quality of life.

Down syndrome is a genetic anomaly that cannot be altered. Instead of the usual 23 pairs of chromosomes that occur in all human cells, the cells of people with Down syndrome have an additional chromosome. Chromosome 21 is present in triplicate in them, which is why Down syndrome is also known as "trisomy".

Worldwide, more than five million people are living with Down syndrome, although not all of them have the same characteristics. Delayed mental and physical development occurs very often, although the resulting disabilities vary in severity. The affected children and adults often have a short stature and can be recognized by special facial features.

If physical disabilities are present, these children and adults often depend on mobility aids to help them become more mobile and independent.

The Bobath concept is a neurologically based, interdisciplinary approach to assessment and treatment. It offers help in coping with everyday life for people whose ability to participate in daily life is restricted due to a neurological or developmental disorder. The Bobath concept takes into account the extent to which certain physical and mental functions such as perception, cognition, mobility, communication and emotional behavior are affected and can be incorporated into the treatment approach to promote other capacities.

Assessment and treatment are the two key elements of the therapeutic and nursing process, with the core of the Bobath concept being a solution-oriented approach focusing on the patients’ individual needs. With the help of special exercises, patients are supposed to win back some autonomy.

Conductive education was developed by the Hungarian physician András Petö and is based on the assumption that body, emotions, mind and language influence each other. Accordingly, the best possible development takes place when a person is challenged equally on all levels. This assumption underlies conductive education, so the concept is rather an educational concept than a treatment option. The special feature of this concept is that children with movement disturbances or disabilities are supported together in groups.

Perfetti therapy is a concept of cognitive therapeutic exercises and a neurological treatment method. Like Bobath, the neuropsychiatrist Prof. Carlo Perfetti assumed that in the course of treatment of neurological and resulting motor disorders, connections need to be created in the brain to achieve improved mobility. He recognized, however, that stimuli alone are not enough to achieve this; children must also consciously experience the movement sequences they are practicing. Movement, perception and mental abilities are seen as a functional unit and jointly stimulated through specific exercises. There is a process of learning, through which patients acquire the ability to move in a controlled manner.

Speech therapy is designed to help impaired children communicate more effectively through speech and language. It treats speech and language impairments, trains voice and pronunciation and teaches techniques for swallowing and hearing disorders. As such, it is especially important for social integration.

With occupational therapy, children practice specific activities that are important for a self-determined life. In particular, these include everyday activities such as getting dressed, eating, playing and cleaning. At the same time, occupational therapy helps improve the child's social and cultural development.

The Czech neurologist Václav Vojta assumed that there are natural movement patterns inherent in each of us. These movements can be evoked reflexively if the right stimuli are applied in certain positions during therapy. With the help of Vojta therapy and special exercises, the main goal is to restore the patient’s mobility that got lost due to damages of the central nervous system. The cause of such damage can be a trauma, for example. A particular advantage of this therapy is that it can be started as early as in infancy.

Research has shown that animals like dogs can provide valuable support in the process of becoming healthy and have a therapeutic effect on humans. Dogs are able to support the training of cognitive skills and improve perceptions. They build a bridge between patients, therapists and the environment. However, animal-assisted therapy does not replace any treatment recommended by a doctor.

All children have a right to individual mobility aids that support them in their everyday lives. Given all the paragraphs and responsibilities, it is sometimes difficult to keep track of everything. Find information from your insurance provider or local associations and get advice on how to apply for a mobility aid or how to get the costs covered.

In order for your health insurance to reimburse a mobility aid, you need a prescription from your physician's practice (this is always required for an initial supply). Here the decision will be made about what mobility aid is useful and necessary in your situation.

It is important to stay with it and seek help as early as possible. All over the world, there are now many specialized experts and other affected parents who will be happy to help you.

Not only parents are affected by the special everyday life with a disabled child but also siblings, grandparents and other family members. This is important to keep in mind. Therefore, dealing openly with the situation is advisable. Allow everyone to take their time and always seek external support whenever you need it. This does not mean that the situation is permanent but often helps overcome fears of contact as well as insecurities.

Every child is entitled to live a good life. Children without disabilities deserve this right just as much as children with disabilities. However, this also means that children with disabilities sometimes need something different: more care or a different kind of schooling, for example.

Up to the age of six, affected children are entitled to early-intervention services. Above all, this includes therapeutic but also educational measures. Integrative or inclusive daycare centers and schools are designed to provide needs-based care taking disabilities into account. Here, children with impairments study together with other, healthy children, often with additional support from special education teachers. However, there are also facilities attended exclusively by children with disabilities. Further information is available from the child and youth welfare services and the inclusion services, for example.

Vacation planning with children always implies considerable effort for organization and thinking for several people. If medications and mobility aids are required on top of that, things can get complicated and many people refrain from taking time off together as a family. Don’t get discouraged! Today, there are numerous travel agencies and hotels specializing in vacation with children with special needs. Group trips are also very popular. Check with the travel agency and go on vacation!

In most cases, the diagnosis of a disabling disease suddenly and permanently changes the view to the future regarding the life together with the child. This involves a process of coping and being sad that differs for every mother and father. The starting point for counseling and support of those affected is respect for the individuality of the life paths. An important step is to get help and be open. You are not alone. Siblings and close relatives are also advised to take on this process and accept offers of help.

Especially in difficult life situations, professional advice alone is often not enough. Many questions concerning everyday life remain unanswered. Exchanging ideas with others who find themselves in similar situations helps, because it will make you feel less alone. On top of that, you can learn from each other. There are support groups for relatives in almost every city. You can meanwhile also benefit from numerous offers on the web, where you can find anything from public chat groups and forums to closed Facebook groups. Click, read and decide for yourself what you feel comfortable with. Getting help actually feels good and is not a sign of weakness. After all, exchanging experiences and information about treatment options is a perfectly natural thing to do.

The first time your child notices a person with a physical or mental disability, he or she often has many questions. Take the opportunity to explain to your child that people are different in many ways, for example, hair color and skin color. Likewise, there are differences in physical abilities. Some people are unable to see, others cannot walk but can see better. Special children's books dealing with this topic can also be helpful. The goal is to encourage acceptance and inclusion.

The degree of disability is the measure of the physical, mental, emotional and social effects of a functional impairment due to a damage to health. Physicians use it to determine the extent to which a person's physical and health condition deviates from the condition typical for that person's age. A medical examination and an expert opinion are always required to determine the degree of disability. It is expressed in degrees of ten; the lowest is 20 and the highest is 100.

If you have an impairment, you should have your degree of disability checked; otherwise, it will be difficult for you to apply for certain types of compensation. These include, for example, tax relief or concessions on public transport and depend on both the type and the degree of disability.