¿Cuál es la labor de una Asociación Síndrome de Down? El caso de Down de Navarra

What does a Down Syndrome Association do? The case of Down Syndrome in Navarra


What is Down syndrome?

Down syndrome (DS) is a congenital defect due to the appearance of a chromosome over the 21st pair in each cell. This abnormality is known as Trisomy 21.

Frequently Asked Questions

1. Why does Down syndrome appear?

DS is the most common intellectual disability of genetic origin. It occurs at the time of fertilization and is produced by the presence of an extra chromosome in the 21st pair. Although it is detectable during pregnancy, its causes are not determined at the moment. This means that nothing the parents of a baby with DS have done during pregnancy has caused this genetic alteration. DS cannot be prevented, so any couple can have a baby with DS.

2. Are they sick people?

DS is not a disease because it cannot be cured; there is no treatment for it. DS is a disability associated with the person, one more characteristic of the person. Babies born with DS may indeed have a higher prevalence of health disorders (heart disease, infections in the respiratory and digestive systems in the early years…).

It is very important to attend to all these possible associated disorders by means of a good health program and by offering positive and stimulating environments that favor their autonomy and the development of all their abilities.

The importance of early care

Early care begins a few months after birth and develops until the child is 6 years old, taking advantage of the neuronal plasticity of the early years, allowing for psychomotor, cognitive, linguistic, social and affective development. The child with DS will reach all the developmental milestones that any other child does; he or she will walk, talk, etc. The difference is that, due to their psychomotor delay, they will reach them later and it will depend, as in any other child, on their individual variability.

Nowadays, early care is not only aimed at achieving the first developmental milestones, but intervention is also directed at the family, so that the person with DS accepts himself and is as independent as possible.

¿Cuál es la labor de una Asociación Síndrome de Down? El caso de Down de Navarra

3. Can Down syndrome be prevented?

It is not possible to know before conception if a couple will have a child with Down syndrome. Once the fetus has been formed, the pregnant woman can request prenatal diagnosis to find out the chromosomal endowment of the fetus being born. There are various tests, the most frequent being: amniocentesis, chorionic biopsy and biochemical screening.

Topics

Society has stereotyped and pigeonholed people with Down syndrome and it is our duty to defend that they are unique and unrepeatable like everyone else.

  • People with Down syndrome are no more loving, happy, or fond of music than anyone else.
  • They are not always “children”, they grow and develop mentally and physically like everyone else, if they are given the necessary conditions for their development.
  • They go through all stages of life: childhood, adolescence, adulthood.
  • There are no degrees of affectation for Down syndrome: you simply have it or you don’t have it.
  • Its nobody’s fault.
  • It’s not a disease.
  • You can’t “cure” it.

The Down syndrome Association of Navarra

We are a non-profit organization established in 1990 on the initiative of a group of parents of people with Down Syndrome who were looking for solutions to the particular problems associated with this disability.

We have been working for 30 years because people with Down’s Syndrome through actions that contribute to improving their quality of life and defending their rights.

We operate in the Autonomous Community of Navarra and are federated in Down Spain (Spanish Federation of Institutions for Down Syndrome). We currently have more than 150 members and 200 collaborating members.

What do we do in our Down’s Syndrome Association?

1. Host Program

Protocol of attention in the case of a birth of a child with DS and attention to any type of consultation (families, entities, university people and students, people interested in our work etc…) informing about activities and programs of the Association.

2. Family Care Program

The family, as the first natural nucleus of inclusion of the person with DS, must have the most complete information from the beginning, as well as adequate training to become involved in the care and education of their child throughout the different stages of his/her life. The Family Care Program offers the following resources:

  • Emotional Support Group for parents with children between 0-3 years
  • Emotional and Educational Support Group for Parents with Children in Infant and Primary School
  • Sibling Emotional Support Group
  • Grandparent Emotional Support Group
  • Individualized Psychological Care for People with Down Syndrome

3. Psycho-pedagogical support program

  • Collaboration with Educational Centers: Service offered with the aim of advising the educational center on the characteristics of people with Down’s Syndrome, providing guidance on access to the Curriculum, providing guidance on different learning methodologies, raising awareness among educational centers and families on the importance of inclusion, advising families, offering training sessions for professionals from educational centers and exchanging experiences, educational materials and topics of interest and current affairs.
  • Speech Therapy.
  • Reading and writing.
  • Global Stimulation.
  • Social Skills.

4. Leisure program

The aim of the Leisure, Free Time and Sport program is to enable our young people to have a standardized leisure time that is appropriate for their age, and they themselves can decide how to use and manage their free time, according to their tastes and interests.

The program offers the following activities:

  • Outings around Pamplona and weekend trips.
  • Urban Camps.
  • Summer Camps.
  • Self-managed holidays: aimed at young people and adults with personal, social and acquired autonomy, supported by a personal assistant.
  • TxalaparDown.
  • Regional dances.
  • AfroDown.
  • Swimming.
  • Football.

4. Itaca Sepap Occupational

Service for the Promotion of Personal Autonomy with the aim of contributing to the development of skills and empowerment of people with Down’s Syndrome.

  • Personal and social adjustment service.
  • Internship in ordinary company.
  • Employment inclusion ECA.
  • Training in social and labor competences for people with DS who are working.
  • Occupational therapy and job training service.
    • Administrative Practice Workshop.
    • Business Simulation Workshop, Ulysses.
    • Cooking workshop.
    • Domestic Skills Workshop.Internship in ordinary company.

5. Itaca Independent Living

Global service aimed at families and especially people with Down Syndrome that facilitates their transition to adult life and support in choosing their life project through Person and Family Centered Planning

  • Apartment for the Promotion of Personal Autonomy.
  • Supervised apartments.
  • Support service in the natural environment.
  • Guidance and Advice to families for the development of life projects.
  • Guidance, advice or referral to professionals and/or specific services.

6. Volunteering

Welcome, training and follow-up program for the volunteer.

Our Experience with NeuronUP

At the Asociación Síndrome de Down Navarra we have been working for almost 3 years with the NeuronUP cognitive rehabilitation platform. The areas it works in, the different possibilities for designing sessions (digital or paper-based activities), the types of activities (cards, games, simulators…), the adaptation to the population you need to work with (children or adults) and so on, make it an effective and motivating intervention resource for our members.

¿Cuál es la labor de una Asociación Síndrome de Down? El caso de Down de Navarra
A person with Down Syndrome doing a NeuronUP activity.

Continuous stimulation of cognitive functions is fundamental for people with DS, thus promoting the proper development of their abilities. On the other hand, their aging process occurs early and in many cases is associated with deterioration in cognitive functions. For this reason, it is necessary to stimulate and work on cognitive abilities from an early age.

Working with NeuronUP in a group

¿Cuál es la labor de una Asociación Síndrome de Down? El caso de Down de Navarra
A group of clients of the Asociación Down Navarra working with NeuronUP

In our entity, we use NeuronUP in a group way in the work sessions of basic and advanced social skills for groups of children and young people from 10 years old. We frequently use the activities of the areas of occupation (ADLs, games, leisure, social participation, etc.) and specific activities of attention, monetary management, for the training in this type of skills so important for the promotion of their personal and social autonomy from that age.

For adults, the psychological care team assesses the cognitive status of each person using Itaca Sepap Occupational and designs individualized sessions adapted to the needs of each person, which are worked on weekly both at group level and individually in individualized psychological counseling sessions.

Additional resources

Finally, one of the most used sections of the platform is that of “additional resources”. Images, sounds, texts, tools, etc., that facilitate the work of individualized intervention with each of our users.

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