Leni, 6, is a cheerful child. And on top of that, very sociable. If she goes with her father to the shop, you are welcomed by the other customers in the Store. Prefer to to to children and shaking your Hand. To say another ‘hi’, makes you happy. However, for your salutations, you reap often derogatory views. “It breaks my heart,” says her father.
Leni is born with a genetic defect to the world. The probability stood at four per cent, had said the doctor. Their first child would be healthy, come to the world, thought Engelmann and his wife. The little girl weighed 3450 grams and was alive and kicking. The Doctors, however, expressed the suspicion that the so-called 5p-syndrome, collapsed for the fresh-baked family a world. “From the Moment when the words ‘intellectual disability’ fell, I could not follow the doctor’s conversation,” says Engelmann on the phone.
With the Worries at home alone
Apparently Leni was a Baby like any other. But when she cried, it sounded like a cat screaming. The genetic defect that will accompany the girl for the Rest of your life, call the specialists, therefore, also cat cry syndrome or Cri du Chat. “We had heard up to the time before,” says her father. Because it is only a suspicion, the Doctors, with the consent of the parents, a blood test.
Almost a whole week Engelmann and his wife lived in constant uncertainty and worry to your child. The worst are the evenings, where he had to sit with his thoughts alone at home for him while his wife and the newborn remained in the hospital. “In these moments, I felt particularly helpless,” says Engelmann.
The diagnosis confirmed the suspicion of Doctors. “That was a slap in the face,” recalls Engelmann. According to estimates, a 50,000 newborn comes with this disease to the world, girls are affected more often than boys. Cause a genetic change on chromosome pair 5. The children are mentally disabled, you have a smaller head and also your body is smaller and lighter than the peers.
Other Sorrows, other joys
“Is ripped the child with the disability out of the Norm, we as fathers are suddenly very alone,” says Engelmann. His voice faltering. The society pushes women to the caring role. Engelmann experienced since the diagnosis again and again.
“The complete care system is designed for women,” laments he, “You saw this in our daughter’s Kindergarten: all kindergarten teachers, every once in a while, a Volunteers.” To his daughter he and his wife attend together, but when it comes to conversation with a medical professional or therapist, feels Engelmann as a father left alone.
His friends and Acquaintances who have children the same age as Leni, he can not entrust until today. “You can’t understand my Situation.” It was a completely different world. “My mate is worried about what career will make your children later, or as the first friend of the daughter will look like,” says Engelmann. His thoughts revolve around the question of whether his daughter will be able to speak and without diapers life. It has a lot more, if Leni will be able to manage one day without the help of others.
“Dad’s with children with disabilities”
Lately, everything revolves in a circle of colleagues on the topic of Lego. Also as Engelmann can not say. Because, although his daughter has already reached the primary school age, plays with wooden toys for two year olds. In such moments, Engelmann feeling the societal pressure not to show any weakness. “We shut us then most of the time, because we were educated,” he says. “I have to be the strong dad.”
But “holing up” was not a solution. Engelmann had to confide in someone. Someone who is familiar with his Situation. Long as he is on the search. In the case of a Familienkur last February, a psychologist, proposes him to network with other fathers. Engelmann founded a Facebook-group.
Since March, the “dad’s of children with disabilities share” in the homonymous group about all sorts of things. Without expressions of Compassion, to endure. The topics range from nutrition, toys of Europe keys for disabled toilets. “You don’t have to always explain and can drain over care and everyday situations, sometimes steam,” he says.
For example, when the topic of Therapierad. In may, angel’s had the health insurance for the assumption of costs of the Therapierads for Leni. A month later, a letter fluttered into the house – with a cancellation. Because Leni is not in the position to operate the wheel alone, denies takeover of the health insurance costs. “This is clearly discrimination”, said Engelmann. The bike was intended for such cases. In addition, he and his wife, Leni, would never leave it unattended – especially not with a Therapierad.
Staksige steps on short routes
A bike tour must remain a desire. And what dreams are there? Silence on the line. One could almost say that the connection would be interrupted. Then, Engelmann says: “If I walk in with her little sister through the forest, then the Great home must stay. The worst part is that I know that you would make a walk fun.”
Nevertheless, Engelmann is not proud of his daughter, he is ashamed. “At least for people who don’t understand the problem.” Leni has done more than the Doctors dared to believe. Short distances brings you with staksigen steps behind. An obstacle are the rugs for you. However, she overcomes every now and again. “But only if she is distracted,” says Engelmann. To be able to communicate, she learns the sign language. Engelmann hopes that you will be used soon also in everyday life to communicate with others.
Love out loud
On an emotional level, his daughter could enrich him incredibly. If Leni is happy, then they show the quite at ease. “She laughs and is happy when she sees me. She hugs me quite often, in the evening, snuggles with me,” says Engelmann. “Many disabled children have extremely awarded a lot of love, because you let your emotions run free,” he is convinced.
The father knows that it is unlikely that Leni will be able to manage one day without the help of others. Nevertheless, he wishes his daughter above all else: “A self-determined life.”