Crying fits, shortness of breath:

Alessandro has to go to school despite his disability

Alessandro and mom Astrid

(Bild: Astrid St.)

For years, the severely disabled Alessandro (14) was taught at home by his mother. Now, however, the 14-year-old is due to start school, as required by the Department of Education. Although there are fears of dramatic health consequences. A legal dispute has broken out between the family and the authorities.

On September 8, 2010, the world of Astrid St. and her husband was turned completely upside down. On that day, their one and only, Alessandro, saw the light of day. As it turned out, he was a very special child. The 14-year-old is missing over 100 genes, which is why he is dependent on his parents' care day and night. He is at the developmental stage of a six to twelve-month-old baby, has no sense of thirst or hunger, knows no day-night rhythm, cannot walk independently and cannot assess dangers.

A small cold is life-threatening
Every 15 minutes, his mother drips a little water into his mouth to prevent him from becoming dehydrated. She gives him a spoonful or two of food every now and then. He can only eat the smallest morsels because he finds it difficult to swallow. He reacts to external stimuli with crying fits that drive him to breathlessness. Only mom Astrid is able to calm her darling down and interpret his facial expressions and gestures. What's more, even a small cold can be life-threatening for him.

You can see it in his face: Alessandro feels safe with his mom

(Bild: Astrid St.)

A mammoth task for which the Styrian has completely given up her life as she knew it until then. She and her husband sacrificed themselves, reducing their own needs to a minimum, to look after their son. Until Corona came along, Alessandro also attended school. "But he hardly had any peace and quiet there, he kept crying and refusing to eat. It was just too much for him." It wasn't until the pandemic that it became clear that home schooling was best for him. "He became so relaxed, slept late again and ate. We were even able to have visitors again," says the mother.

Education directorate insists on school attendance
But now, she fears, everything is about to change. The Education Directorate has already twice denied her application to continue home schooling. When asked, the Directorate of Education stated: "Even if it may seem regrettable to prohibit a child from attending school at home, the decision in this case is based solely on the current legal situation. [...] Home schooling would also mean that the child would have to take external examinations in all compulsory subjects at the end of the school year, which could well represent an additional, disproportionate burden. Even if the situation is regrettable, the authority is bound by the legal requirements and must act in accordance with the current legal situation."

Home schooling has neither been abolished nor suspended. As a lawyer, I find the claims made by the Education Directorate untenable.

Anwalt Andreas Kleinbichler

Bild: Heinz Weeber

An argument that Andreas Kleinbichler, lawyer for the family, cannot understand: "Every child naturally has a right to an education at school. However, the infliction of mental and physical pain is forbidden! Home schooling has neither been abolished nor suspended. As a lawyer, I find the claims made by the Directorate of Education untenable. An initial decision by the Directorate of Education in July has already been successfully challenged before the Federal Administrative Court. The legal view now adopted by the Education Directorate in the new decision is also untenable. We expect the Federal Administrative Court to find in our favor this time too."

We recently had a discussion with him at a school. What we feared happened, he didn't eat anything afterwards. I don't want my son to be dependent on a feeding tube because of this. They're ruining us!

Mama Astrid

Mom Astrid can't understand the education department's point of view either: "The authorities are completely unconcerned about his state of health. Alessandro was already being taught at home. Why should that no longer be the case? We recently had a conversation with him at a school. What we feared happened, he didn't eat anything afterwards. I don't want my son to be dependent on a feeding tube because of this. They're ruining us!"