Martí, with autism and on the waiting list

Families with children with special needs, due to their physical or cognitive situation, are always debating between what will be best for their child, a regular school where the child will be with other children with different abilities or a special education center with resources and specialized personnel, but without diversity.

The inclusive school is the objective of the educational community, supported by legislation. The 2017 decree indicates that all children, with minimal exceptions, must be together. Some not to be excluded; others, so that they do not lose the opportunity to live with children who think or live differently.

To do this, there must be teachers trained in neurodiversity and a host of professionals and additional resources to allow everyone to move forward. Now this is not true.

Martí Subías was born five years ago and at the age of 3 he was diagnosed with autism, a 75% disability and a degree 3 dependency. He entered with a reinforcement resource (SIEI) in the school of his brother Luca, 7 years old, a concerted and welcoming center, a cooperative of teachers from Castelldefels with an active education project.

Martí tends to disconnect from the reality that surrounds him and it is difficult for him to follow the order of the day. He sometimes isolates himself and seeks his interests. If a story is told that he doesn’t follow, he gets up and leaves. Maybe he goes to a corner where he knows there are some cars or trains, but he doesn’t use the word to request them. Sometimes he will tap an object on a surface or seek to sway for stimulation.

This is a “high demand” student because he is not able to express what he wants and what he needs, such as drinking or eating, he does not control sphincters and becomes frustrated and dysregulated due to the impotence of not being able to communicate.

He has muscle weakness (hypotonia and gait ataxia). Therefore, they require a third person to attend to their basic needs. At school he has a caregiver and is also assisted by a psychologist and a physiotherapist for one hour every 15 days. “All in all, the school gives him more than what the SIEI resource recognizes,” thanks his father, Eduard Subías, “and even so it is insufficient.” At the beginning of his schooling, the differences with his classmates were not so noticeable. Now the parents know that it is not that he does not continue, it is that he does not learn because the way in which neurotypical children acquire knowledge, based on imitation and repetition, does not work for him. “Martí has ??to learn in a different way,” says his mother, Olga González.

Because early intervention is a key strategy in autism, her parents have gone out of their way to provide it. Speech therapist to work on communication through pictograms, sensory integration (psychomotor skills, attention, initiative), occupational therapy to learn basic activities of daily living (dressing, showering), and therapy in water and with horses.

The price of all this is breaking their school routine and the consequent stress. Some days they don’t take him first thing in the morning, others he leaves the center at noon, or in the afternoon. They also move to Barcelona.

To be available for his son, the father took advantage of a staff reduction plan at the company where he worked, he got money that he has used to pay for all these therapies. Olga reduced the day.

The house is a gym set up to strengthen your muscles. The parents teach him pictograms to tell him what is going to happen. Dinner, teeth, sleep. One day Martí pointed to the letter of the madeleine and everything was celebrated. Another uttered a “uc” sound which was suc (juice). That gives parents hope that in the future he will be able to formulate sentences. “We need him to communicate or he will always be frustrated.” But time slips out of their hands because they believe that it is now, with a brain more capable than ever of generating connections, when they have to push.

In February, the educational psychology care team (EAP) suggested they visit the Can Rigol special education center in El Prat de Llobregat. It excited them. They use pictograms for routine and the child could learn what he needs in school time.

They asked for a place. The demand is very high for this type of student. Education believes that the child is progressing and that there are others with prioritized needs, so all possible measures must be exhausted before going to a special education center, according to department sources. “And the EAP estimates that he should stay in school.” The parents ask that, at least, the EAP reassess Martí’s situation, after the last report, 2 years ago, since there is new evidence of his needs (Sant Joan de Déu hospital) not collected. They trust in September. Perhaps they will increase the ratios, or Martí can go to his center for a few days, others to the special education center.

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