Society generally welcomes the fact that people will eventually want to have children. If, on the other hand, people with intellectual disabilities have children, this often arouses misunderstanding. But why actually? Disabled parents can also be good parents.
By Gisela Keuerleber
People with intellectual disabilities are not automatically overwhelmed with caring for children. (Stock.XCHNG)
"Brother Jakob, are you still asleep?. "
A young mother with her nine month old son. You just came from the pediatrician because the little one has a cold, now he is tired.
"Ne darling, normally you should be a bit fitter, you slept on the way. When he gets his teeth, I don’t know what to do, then he screams, but otherwise he’s the dear little sweetheart."
The young mother – let’s call her Nina – is only 19. She can’t live alone with her son, she needs support for many things. Because: She is mentally handicapped. Her home is the ‘Accompanied Parenthood’ residential project by Diakonie Michaelshoven in Cologne. Mothers with a cognitive impairment can live there with their children for the first few years until a long-term solution is found. Especially in the first week after birth, these mothers need help and guidance. Barbara Heine, one of the supervisors of the residential group:
"In the first few weeks when they live here, we stand behind them around the clock like a shadow, because we first have to get an idea of where help is needed. This can start with caring for the child, through everyday life, everyday structure, development, education, nutrition, it can affect every area of life and is different for every mother."
Clear rules help mothers organize their everyday life with the child. For example, every woman does kitchen work regularly.
Here, too, there is a helper at your side. The first preparations for lunch start in the late morning. Nina sniffs and wants to know what is on the menu today:
"Chive soup, I bet you’ve never eaten chive soup."
"No, I don’t like that. just try it."
Nina seems woken up, but would not get along with her little son alone. Like many mothers here, she has problems handling multiple tasks at the same time. She quickly gets stressed when, for example, a pediatrician appointment is due and she has to think about the bottle, diapers for the child and the departure times of the tram at the same time. And yet women are making enormous strides, like the mother of little Pierre, who will be two years old in a few weeks.
"This is celebrated with coffee and cake, and then comes the grandma and the other grandma. I also wanted two candles in a cake and wanted to see if he could blow out two candles."
The young woman looks shy and constantly looks at the floor while speaking. Her story and the cause of her intellectual disability are not entirely clear. What is certain is that her mother was dependent on alcohol and that she experienced violence as a child. Now, herself a mother, she is often insecure and has little self-confidence. But: she is very loving with her child:
"So I like to play with Pierre so Legos, he finds that very interesting. also Playmobil, yes and car and train, ffff, tschtsch, huhu. "
The young mother had to learn a lot in the past two years to do justice to her son. When she painstakingly lists when Pierre is hungry and when she has to have the food ready, and that a glass is always available in case of an emergency, you can see the effort with which she appropriated it all. The strong and agile boy challenges his mom, and so she is forced to mobilize all her strength.
"Small children, of course, put a lot of strain on their parents, and with mentally handicapped people it is often the case that many resources are slumbering that have not been accessed in this way, and so children get everything out of it. And without the child, she would certainly not have developed so quickly."
In the meantime, the women are having lunch with their children and eating together like every day. Little Pierre’s mother will soon move into her own apartment with her father – he too is disabled. Pierre will go to a day care center during the day and will be well looked after there. At home, the parents receive further support through social educational family help. The other mothers will also be so independent in two or three years that they can get along with their children, albeit with help. Models that have proven themselves in recent years. And yet – the fact that mentally disabled children have children is still a taboo subject:
"There are very large reservations in society in general about parenting and the disabled. You notice that in everyday life, in everyday business life, when you are dealing with other people, that there is a lot of rejection. That must not be."
Such a view of people with intellectual disabilities is often shaped by ignorance and misunderstandings. The severely handicapped or multiple handicapped usually do not develop a desire to have children. But many in cognitive thinking strongly disabled people can cope with their everyday life and that of their children. To deny such people the right to children – according to the Freiburg psychologist and theologian Joachim Walter – testifies to simple ignorance. Walter headed the Diakonie Kork near Freiburg for 30 years and is committed to equality for the disabled. In numerous publications he dealt with the topic of sexuality of disabled people and their right to parenthood. According to Walter, the development of a person runs on three levels: in the area of cognitive skills, i.e. the ability to process knowledge and knowledge, on the social and psychological-emotional level.
"When I imagine that in the imagination of many relatives and employees in the social field far to the present day, intellectual disability has always been confused with cognitive impairment in the sense that it can be classified as the level of developmental psychology of a five to five six-year-old child saw, and a child has no adult sexuality, and a child cannot have children, that is inconceivable."
A second prejudice: children of mentally disabled people or people with learning delays are also born impaired. Not correct. Just under a third of the damage is genetic. The majority of disabilities are acquired later – through illness, accidents or birth defects. In the 1980s, the answers to the questions began to change:
"How should disabled people live? What rights do they have, how much self-determination do they have to be granted??"
Until then, it was common practice to house them in homes, but now there were new, supervised forms of living and shared apartments in which people could live more independently. These ideas originated in Scandinavia. Joachim Walter remembers:
"We have to go back to the 1960s and 1970s in Scandinavia, where the principle of normalization, coming from Denmark, prevailed, also came to Germany in the 1980s, where the change from care to assistance via the keyword self-determination became important. Then in the 90s the new childcare law, then the Social Code IX with participation and participation, i.e. more and more self-determination for people with disabilities with regard to their sexuality in view and enforced and then in consequence the consideration: yes if sexuality, why then not children."
Forced sterilization has been prohibited since the revision of the childcare law in the early 1990s. This ended a practice that went back to the inhumane ideas of the National Socialists. But in other countries too, heredity teaching haunted the mind for a long time. As a result, mentally disabled women have been subject to forced sterilization all over the world – in the United States, Japan and Europe. This practice lasted until the 1970s. This chapter is a thing of the past, but – according to Joachim Walter – disregard for people with disabilities can be felt in some discussions about cuts in public budgets.
"That swells up again when we experience the savings discussion, when we see the cost factor of disability again, when counties decide that this is too expensive for them, then something comes back to the wrong level with the keyword ballast existence in Nazi Germany at the time was."
How much can humanity cost? What must a society do that does not want to exclude physically or cognitively impaired people? A society that uses the term ‘inclusion’ – meaning participation – not only as a fashion term?
"As a youth welfare office, we have the legal task of supporting parents in bringing up their children, and parents are entitled to this support service / and we do not differentiate between parents who deserved or did not deserve it."
All parents, whether disabled or not, are entitled to this if necessary, according to the Social Security Code, paragraph eight, says Klaus Peter Völlmecke from the Cologne Youth Welfare Office. For a mother with her child in the project "Accompanied parenthood" living in Cologne-Michaelshoven, the youth welfare office pays the sponsor 130 euros a day. This covers accommodation and help for mother and child. Placing a child in a foster family would be cheaper – but this point of view is not decisive for the decision of the youth welfare office, says Klaus-Peter Völlmecke:
"The examination of the needs situation of parents or for the children and the design of the help goes purely from a content point of view, the retention of the children by the parents is justified or the parenting ability of the parents is not given or not given, and if we believe the whereabouts of the Children are incorrect or not in the best interests of the child, then the child will be accommodated outside the home."
If a mother is so self-sufficient that she lives with the child in her own apartment, but cannot do some things in everyday life without help, she receives help from the general social service several times a week, even daily if necessary. And yet the question remains, how can municipalities, which are almost all under the pressure of saving, manage to accomplish these welfare tasks? In Cologne you have "on local" Sources of money opened up and financed the educational support through a kind of cross-subsidization. Despite the need to save, this municipality tries to support parents with cognitive disabilities. Their right to children is guaranteed in the Basic Law. Joachim Walter:
"Already from Article 3 of the Basic Law: ‘Nobody should be discriminated against because of their disability’. Now, since March 2009, we have this UN Convention on the Rights of Persons with Disabilities, which is also applicable in Germany, where sexual self-determination is particularly emphasized and Article 23 then highlights the right to children."
The UN Convention on the Rights of Persons with Disabilities also grants cognitively handicapped people the right to parenthood. But even before the signing of the UN article, the legal situation in Germany was clear: disabled parenting is legally guaranteed. However, the responsibility lies with the respective youth and social welfare offices, where it is decided whether a disabled couple is supported in the search for a suitable housing project and financed accordingly. Some providers – for example the Dortmund association Mobile Life Aid for Disabled – offers network Information in "easier language": This enables cognitively handicapped people to find out about offers themselves.
For little Johannes and his mother Katja, who has a language and learning disability, there was no way to live together in Bavaria, where the two are at home. For the first few weeks, the mother and child were accommodated in a home for the mentally ill. With the help of a dedicated employee from the responsible youth welfare office, they finally found a place in a residential group in Bonn.
Katja has been living with the little one for a year "cottage", where 13 children between the ages of 2 and 14 live with their cognitively disabled mothers. Some fathers visit their families, some fathers live with their families in one of the apartments, but many producers are absent, like the other friend by Katja, who left her after the child was born. Although there are several residential groups for accompanied parenting in North Rhine-Westphalia, the waiting lists are long. In Bonn too, only every eighth request can be considered. Katja now feels comfortable with her little one:
"The nice thing is when he laughs, so squeak, and laugh so, that’s the nicest thing when he talks like that in baby talk, yes, and when he does eat vegetable glasses, I try to teach him the bottle in the evening , so I always do it by feeling, not by the clock."
Johannes is still small and cute. He is lying on the colorful crawling blanket and is beaming at his mom. But what will it be like when he goes to kindergarten and then to school? Will he be adequately promoted linguistically and intellectually? Will he reject his disabled mother, will he be ashamed? How many strains does this mother-child relationship withstand? In the "cottage" there is experience in Bonn. Two girls, 12 and 13 years old, live here and attend high school. The head of Kate, Sigrid Lücke-Haumann:
"With the big girls you find that they take on many tasks that say don’t come scared, I’ll do it for you, I’ll fill it out for you. But not so that the mothers look ashamed, they make it very nice. And they also say that’s too much for me, I don’t want that."
Melanie, twelve, has no problem having a disabled mother.
"So I don’t really care, I just accept my mother as she is, she can’t help it. She can read perfectly, but she can’t really help me with my homework."
Melanie is a bright girl. She always brings good grades home, although her mother can’t help her with her homework or anything else. The facility takes care of this: an art and social worker and retired teachers support the children in the afternoons with learning and are there when they need help on the computer. There is also a support group for kindergarten children in which creativity and language, rules and social behavior are strengthened.
It is estimated that more than 2,000 children live in Germany with their mentally disabled mothers or fathers. Most in assisted living projects. There they are under constant supervision – the desire to have children is often linked to the desire to live a normal life and to prove to the environment that they can be normal parents. The psychologist Joachim Walther:
"I decide myself that I will have a child now, and with this child I open the door to the world of the normal and thus separate myself from my parent’s home or my situation, so that this desire to have children is often psychologically a rebel against the foreign determination can."
It has not yet reached the public and some youth welfare offices that disabled parents are not worse parents if their cognitive deficits are compensated for by socio-educational support. This is essential for the best interests of the child – but in the facilities, support and assistance should not become a constant check.
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