• October 24, 2020

Growing up with trisomy 21: Tom wants to move out

A few crows are sailing by. There is nothing to hear from the wind, it is quiet in the apartment on the 6th floor. A stand-alone new building in the Hamburg district of Ottensen, he stands there like a tower. Cornelia Hampel sits at the wooden table, behind her you can see through the large windows over the whole city. She cooked tea and steamed in the glass jug. The man is working, her son Timo is coming home, daughter Gina has crumbled in her room as teenagers do. A Wednesday afternoon of a normal family. Well, almost normal.

"And then you have the salad?

Cornelia Hampel's voice is soft and quiet, she tells of Timo. From the pregnancy with him, the first prenatal examinations that were not as precise then as they are today, and how he slipped through the first-trimester test, she says. The doctors urgently recommended an amniotic fluid analysis. Cornelia smiles. At that time, I said to myself, 'Oh, there's a pretty good chance of having a non-disabled child. In retrospect, that was courageous. And then you have the salad.? Then she laughs into the silence about her sloppy formulation, fine lines deepen in her eyes.



Timo wants to live with Tom

Timo was born with Down syndrome. Often, this is associated with diseases such as heart defects or immune deficiencies, even Timo takes medication. A couple are standing on the wooden table. The life expectancy of people with trisomy 21 has increased enormously, at 60 years it is approximately. Today Timo is 20 years old, goes to school. And wants to move out. Cornelia Hampel: "My son does not want to get used to the fact that he would like to have his own flat. And a job that brings something to this society and to him. He does not feel like giving alms. Simple wishes are that, Cornelia Hampel formulates it with a smile on her lips. With the same naturalness she mentions in a subordinate clause that she cycled on the mountain bike three times over the Alps and works as a programmer. "I try things out to see if they're good or not." Is that courageous or daring? Maybe both. Cornelia Hampel adds, "And I already have some stamina." Also for Timo's departure she needs a long breath. "We do not go out and rent an apartment for our child. There are special providers in the care sector.? That life with Timo has always been a life with this bureaucracy, you can tell by how natural Cornelia Hampel words of word like? Gesamtplankonferenz? woven into their sentences. This conference will take place in six weeks and will be organized by the state. It determines how much support Timo needs when he is away from home and how the funding is provided. An important date. Timo has clearly stated that he does not want to attract strangers into an existing flat. He wants to live with his buddy Tom. Even Tom has a developmental delay, the two have played together in the kindergarten. "He's more carefree than me?" Cornelia says about Timo. But it is also in the nature of the offspring, to plunge into adventure, while the parents fear.



Inclusion is something of a cage for Cornelia Hampel

Although Timo is one of the first generation to grow up with the so-called inclusion, nonetheless, people with a disability in Germany are not even integrated into society. You rarely see them on the street and then you just miss them, they move in a parallel universe, consisting of residential groups, educationally-led leisure activities and workshops for the disabled. Cornelia Hampel's relationship to this system is more than ambiguous: "I always associate the image of a cage with it. An aviary, for which one flips the bird's wings, so that he does not think, that he can fly further than to the lattice. But the logic of these systems is so powerful and engaging that sometimes, in black hours, I thought I had to pry his wings so he would fit into the cages assigned to him. So it's not so sad that he has to go into this cage cage. Cornelia wrestles with her composure and adds: "And then I say to myself, 'No, we'll do it somehow. That will come. ??



Timo has as many appointments as a foreign minister

Timo is coming home. He stands in the door, no chance to look past him? Timo is an exclamation point. His stature is straight and every sentence an announcement. "I changed clothes again quickly," he says, the pronunciation is a bit unclear, the content is clear. He shines with his colorful striped shirt like a bunch of tulips, which one put into the flat. "Hello, big one?" His mother greets him. Timo only has one hour, then he has to go again. To speech therapist.Timo has as many appointments as a foreign minister in addition to his education in the vocational education at the campus Uhlenhorst: tennis on Friday, handball training and hockey on Saturday. On Tuesday, football and work as a trainer assistant to an integration sports group are on the program, and on Thursday he is attending a seminar at the Special Education Institute of the University of Hamburg.

"And if I need help, then I ask mom.

When asked what would be the most beautiful thing about his first home, the answer comes off the gun: "That I have peace and quiet in front of my parents !? He enjoys himself royally and adds: "First, I want to find a job. A job is important to me so that I can earn money so I can buy my own food. And what does he do in the apartment? What good. "Put in furniture, the apartment is nice and big, then I can spread myself in it." His mother prompted and flanked his sentences with explanations. That he wants to have a decent first school leaving certificate because the degree is the first goal on the way to society, and that he wants to have the same washing machine model he already knows from his parents' home. Timo nods vigorously. "And if I need help, then I ask mom.

That one worries, is that so !?

Not a minute later, the two of them are spending their money on the gym Timo wants to visit. His mother gets louder when it comes to the annual contribution: "This is not a special fare for you !? Then it's back to the school. "You will not enjoy your free time, you have to learn." Typical child-parent discussions. One knows.

In between, Cornelia asks her son to ask his sister if she can be seen. Leave her. 17 years, long hair, pretty as a foal and stubborn as a mule, if you want to believe her mother. Whereby the amiable stubbornness may also be in the family. "Every child is exhausting?" Cornelia Hampel emphasized earlier. "And every child has its problems. Nobody takes that off. And being worried is one of those things, that's why you got them.?

"Maybe I'll let my son live in his apartment in ten years?

As Timo roars away again with a clamor, one gets an idea of ​​what it will be like when both children have flown out. A little paler, a bit quieter. So quiet that the worries in the head are quite loud. Cornelia Hampel is scared that someone will hurt Timo. Or before, that you can make him fat and he gets this typical Mongo figure, as she says. Many thoughts revolve around the world in which she releases him. A synchronized society, which is about self-optimization and about being as beautiful and efficient as possible. "We have already proven that," says Cornelia Hampel, referring to the Third Reich, "that this form does not bring the better company result, but only fear and terror."

None of these hardships will vanish when six weeks are spent on Timo's progress. The conference is not about the political climate, about normalization or the loss of control of a mother. Instead, it is about letters to the authorities, about shopping and how to organize the way to work. But who knows? Says Cornelia Hampel. "Maybe I'll let my son live in his apartment in ten years' time. Then we have a nice evening, I go home and am happy that he is such a lively and contented person. And maybe I'll end up with my husband in a pub afterwards? In the next movement, her laughter fills the big room to the last corner. "It's not like I do not have a nice life without children."

Frank Stephens' POWERFUL Speech On Down Syndrome (October 2020).