The ten-year effort of the Equilibrium team to provide home comfort, human warmth and learning and development opportunities for the children of Mogilino was appreciated by the State Agency of Child Protection, which awarded the Special Person of the Year Award to Nadezhda Petrova – long-time manager , a psychologist and mentor at The Pink House (Awards “I guaranee a Happy Childhood”, 2019). The difficulties, the quests, the experiences, the successes in caring for children and young people with complex disabilities are summarized by Nadya in Equilibrium’s publication – A Short Story of Love.
A brief history of The Pink House and the first children removed from Mogilino
As of June 1, 2009, Equilibrium took over the management of the Complex for Social Services for Children and Families at Risk (CSSCF) in the city of Ruse, consisting of a Center for Social Support (CSS), a Center for Working with Street Children (CSC) and the Family-type Centre for Children and Youth with Disabilities ( known as the Pink House) – which housed the first 7 children and 1 young adult removed from the Home for Mentally Impaired Children and Youth in Mogilino village. We were actively involved in the closure of the Ruse Home for Medical-Social Care, 2012 – 2015, and accepted 3 of the most severely disabled children into the Pink House. Similarly, we helped close the same type of institution in Shumen (2014 – 2015) by offering care to 4 of the remaining children who were difficult to accommodate because of their characteristics at the time (eg severe tendencies towards self-harm, difficulty swallowing and eating) in our Pink House.
The total number of children and young adults who have entered the Pink House is 17. In addition to the above children, relocated from closed institutions, there have also been 2 placements from the community. Currently, 12 children live in the Pink House. This means that 5 children have left –
– 3 have been adopted abroad having developed significantly during their time at the Pink House
– 1 was removed to a foster family after a significant improvement in his condition
– 1 moderately disabled Mogilino youth was relocated to a more appropriate family-type home
All children are enrolled in the education system and attend social services. They also receive additional physiotherpy for contracture prevention and better overall development. They received biofeedback, hippotherapy and swimming sessions. They regularly visit the seaside. They participate in all holidays and events of CSSCF and Equilibrium.
Our main goals related to their development are: autonomy; communication; pedagogical support for dealing with puberty and body changes; individual rhythm and attitude, celebration of personal events (eg birthdays, graduations), participation in community life (concerts, circus, children’s holiday, puppet theatre, sports, etc.)
Initially reserved, now neighbours of the Pink House are committed, caring and generous. What changed them? Most important was the change in attitudes of the care team towards neighbours. In the early years, when some of the neighbors were rude, angry, and threatened to complain that the children were shouting and disturbing their peace, we were both defensive and offensive. We also threatened to complain that they violate the children’s right to an accessible environment by parking in the parking lot. Later, we realized that we should not react to hostility with hostility. Care providers have gotten to know the neighbours and when they meet someone on the street they greet him and try to start a conversation. They share points of human interest. They talk about broken streets, overcrowded containers and more topics of common interest. The fact that the state does not take good care of children (all children), families with difficulties. They share how difficult it is to take care of someone who can’t tell you what they want and what they need. Many of the neighbours already know the names of the children. The youngsters go for a walk in the neighborhood. Together with the carer, they visit the neighborhood bakeries. The neighborhood children have changed their parents’ attitude towards our children. They come to play in our garden at the same time as the youngsters we care for. Curious, they ask questions and receive answers from the care team.
The Pink House is well recognized in the city, thanks to our open door policy, the participation of the children in Equilibrium events and the frequent public presentations of their progress or specific needs. Local sponsorship has increased and many children from schools are running their own small fundraising campaigns.
Progress and development of every child and young person at the Pink House House – how seemingly impossible things are made possible
Raising children is a complex and dynamic process and is full of surprises. Especially when it comes to children who, for various reasons, are separated from their parents and live in small family-type homes. When talking about children with developmental disabilities, many people are skeptical and even think that these children are a burden on the state. But…! There’s a big BUT! Despite the wide variety of disabilities, children and young people are able to surprise us. Exactly how this will happen is an open question. What are the surprises provided by the 12 children and young adults living in the Pink House?
Here it goes:
- I.from Mogilino is already 26 years old, but when the Pink House became her home, she was 17 – suffering from cerebral palsy – spastic quadriparesis. Her disabilities were severe. In the beginning, she lay in bed, folded in the so-called embryonic posture, and experienced painful tension at every attempt at physical contact. The presence of other children and adults was unbearable for her. She lay passively in bed, and when we tried to position her she groaned. I. was prone to frequent and severe epileptic seizures. Now, when we are asked when the last epileptic fit was, we have to check the medical records, since it is difficult to remember how many years ago it was. When I. came, she ate only from a bottle with a rubber teat. For years she was helped to eat from a spoon, but her swallowing was slow and painful and worsened over time so that I. could not take enough food. Now she still feeds on the bottle, but can use it herself controling the slope of the bottle and the amount of food she absorbs. When she finishes she throws the bottle. She likes being able to eat autonomously. She is now calm in the presence of other children and adults, and is much more relaxed in general, even making contact with strangers.
- S.from Mogilino is a young man who will never walk, but that does not mean that he is unable to move on his own. He suffers from cerebral palsy with spastic quadriparesis. He is already 22, and when he came to the PinkHouse he was 13 years old. At first, he couldn’t do anything on his own – he couldn’t even get out of bed by himself. He remained passive while eating. Nowadays, despite his motor impairment, the young man gets out of bed on his own – he has mastered a specific a method of crawling that suits him and travels independently in the house. He manages his wheelchair himself and can open the doors. Although he struggles, he feeds on his own, with support. He really enjoys social contact.
- R.from Mogilino is a girl who has beenvisually impaired since birth and has hydrocephalus. She is 23 now, and when she first came to the Pink House she was 13 years old. It is yet another proof of the unnecessary disability that institutional care imposes on children and young people. Although she had no motor impairment, at the age of 13, no one had helped her learn to walk. Also, no one had helped her learn to eat on her own, to dress and undress on her own, to be able to make meaningful contact with other children and adults. Now, R. can not only walk, but also move independently in the house and eat alone. She undresses herself and dresses with a little help. She understands adult speech and follows simple instructions. She speaks a few words.
- V.from Mogilino is already 18 years old – suffering from childhood cerebral palsy. When she came to live in the house she wasonly 7 years old. She is not the most active in the house, but that doesn’t mean she is passive – she just prefers to choose what to do herself. Like most children, at first she couldn’t do anything on her own and seemed to have no desire for activity. The girl is now finding herself in the space of the house and moving by crawling or operating her wheelchair. With great patience and with the support of the whole team, she can eat on her own, hold a glass on her own and control the slope when drinking. She is now much more active seeking contact with adults and other children. She partners other kids in activity and exchanges toys with them. Active during bathing, dressing, undressing – assists. She can resact jealously – if a staff member has been dealing with her for a while and then turns her attention to another child, V. immediately responds by trying to remove the child or to take the toy that was given to him – something that she would never do in the early years.
- K.from Mogilino – he is already an adult, and at the time of his arrival at the PinkHouse he was 7 years old and the size of a baby. He has cerebral palsy, spastic quadriparesis, upper extremity malformations and severe visual impairment. Feeding was carried out with a bottle with a sweetened food. He couldn’t keep his head straight on the axis of his body. He did not exercise activity even when lying down. It was inconceivable that he would stand upright, even with help, since the lower limbs could not bear the weight of the body. He did not know the parts of his body and did not respond to speech directed at him. Adult contact strained him. He made noises (vocalized) only when he was uncomfortable. Not only does he now eat with a spoon, but he can hold the spoon on his own (he needs some scooping help) – he chews well. He holds his head firmly upright and is extremely active lying down. He can sit upright without a support. He can stand up for a little while with the help of an adult and he is extremely happy doing that. K. responds (comes to life) to speech directed at him and enjoys contact with familiar adults. He vocalizes actively during the day and pronounces syllables “ma-ma”, “ba-ba”. Despite the prognosis for progressively deepening mental retardation, K. begins to “skive’’ when he is told that he will be at school the next day – he becomes slack, whimpering, gives the impression that he is ill and when he is left home for these reasons he immediately improves, becomes active, laughs, “talks”. K. is a musician, he has his own desk, on which he drums with his hand, making such rhythms and melodies always with a broad smile.
- N.from Mogilino turned 18 at the end of May this year (2019).She was only 9 years old when she arrive at the Pink House. Hyperactive, she wandered around a great deal but fell easily. She could not control her bladder and wouldn’t let you know when she needed the toilet. She had no self-care skills. She was able to eat on his own, but needed constant monitoring including supervision while eating. N. was aggressive towards the other children – biting them viciously. Making contact with strangers was extremely problematic – she would regurgitate and vomit in these circumstances. In protest she removed her diaper and smeared excrement over herself and the walls and personal belongings in her room. Nowadays, N. can use the toilet independently and notifies you when she needs to go. She can wash hands before and after eating under the supervision of an adult. She feeds on her and can control the amount of food she takes onto a spoon. She understands that it is important to have a napkin to wipe her mouth with when finishes eating. She helps with bathing – attempts to wash itself. She dresses and undresses herself and helps with chores. She tries to pronounce syllables – ba-ba-ba. N. engages in activities that give her pleasure – she helps carers to fold the laundry and leads P. to the bedroom and to the kitchen. She can also unlock and open a door locked with a key and pick up a toy or object in response to signals which is enjoyable but also requires adult attention.
- Cl. from Mogilinowill turn 18 in December this year (2019). Hewas 7 years old when he arrived. He needed to be fed by an adult. After each meal, he ruminated for a long time. He was not active or cooperative in dressing and undressing. He did not respond adequately to speech directed at him – he did not follow instructions. He was afraid of bathing water. He was on the move most of the time. He had no interest in the other children. Nowadays, Cl. feeds himself under the supervision of an adult. Chewing food well. The ruminations are significantly reduced. He enjoys the bath and tries to prolong the process. He tries to reach other children, though not in the most appropriate way. CI. is in the living room with other children almost all day long, smiling and very chatty. He is significantly calmer and has significantly reduced motor activity. He responds appropriately to a speech directed at him – obeys simple instructions related to performing activities by himself.
- S.is from a family but also has a stay in an institution. On admission, he was 10 years old. It was impossible for him to move alone. He remained passive during the main modesof activity, such as bathing, eating, dressing and undressing – waiting for someone else to do things for him. At first, he was afraid of the water and cried when bathing. He only responded to adult contact with a smile. He did not gesture or vocalize. Currently S. is 15 years old and moves independently, both inside the house and outside. Extremely active and mobile. He is curious and looking for contacts with other children and adults. He feeds on its own, demonstrating food preferences. He enjoys bathing and tries to extend it. He can now put on and remove his inner shoes. S. mimics gestures and has his own specific “language”. He can unlock a door with a key.
- F.is from Shumenbaby institution. She was 8 years old: it was impossible to leave her alone during the first months because of extreme self-agression. The main focus was on preventing her bashing her head with fists and knees. To be able to sleep, she was swaddled like a baby. Bathing was a test for both her and the care providers. She couldn’t walk alone. The presence (noise) of other children caused her great suffering. Eating was very difficult. There were traces of tying to the legs and arms, genital wounds, scabs on the head, and deformities to her ears that contained pus. She was not born blind but blinded herself in the institution by striking her eyes with her knees. Even knee surgery was performed. F. is currently 13 years old: her progress is significant, with auto-aggression very rare. She became more sociable, easily in contact with an adult, and often smiles. She can even feed on her own now, thanks to the persistence and perseverance of the care providerss, as she needs help scooping up the food with a spoon, although she can find her mouth on her own. Well, inevitably, she misses the target sometimes and ends up with food all over her face but it provides fun for the others and she starts to laugh as well. For certain periods of time, she can be left alone without having to be held by the hands or supervised by an adult. When someone holds her hands or guides her, she does not hurt herself. She follows a variety of instructions: gives a kiss goodbye, imitates the gestures of the adult, walks while holding onto the adult but can also make independent steps, dance movements, etc.
10 / 11. S. and M. are from Shumen baby institution. On admission: both children were diagnosed as suffering from cerebral palsy – spastic quadriparesis with increased muscle tone accompanied by epilepsy. Their condition does not allow them to sit on their own without being specially positioned and supported. On admission, both children were extremely passive – even when in the bed, they made no attempt at any movement. In no way did they communicate their needs and desires. They did not respond to music and children’s animated films. They did not react when left alone. It was extremely difficult to eat because they were taking only sweetened food – with a bottle. As of now both children are fed with whole foods that are not sweetened by taking them with a spoon. They are extremely active – they turn from the back on their belly, keep their head upright, and are happiest when positioned vertically so they can watch what is happening around them, like everyone else does. They no longer tolerate being left alone – they announce their desire to communicate by shouting and crying. Both love to listen to music and watch children’s animation, but most of all they like listening when people read to them.
- 12. S.was raised by his father after his mother’s death. On admission, he was13 years old: admitted directly from the hospital after undergoing treatment for frozen toes. He has cerebral palsy. On admission, he was underweight for his age and unable to move independently. He suffered from the separation from his father, rubbing his head against the wall to the extent that he lost patches of Bathing was one of the most difficult times for him – he was literally terrified of the water. One of the main focuses of the work was the promotion and support of contacts with the father. Efforts were made to motivate the father, to meet with his son weekly. S. is currently 15 years old and fairly independent. He can walk and navigate around the house and is well adapted to the living conditions meaning that behaviors by which he showed the suffering of separation from its father are attributed to the past. Bathing is already one of his favorite experiences. S. can put on and take off his shoes independently. He feeds on its own, successfully controlling the amount of food that he picks up. He drinks from a glass that he also holds on his own, with no need for help to control the slope. Enthusiastic about going to school, he especially likes to ring the bell by pushing the button, thus starting the school lessons and is very pleased with the sound that is makes. Currently, the boy enjoys the visits by his father every week.