Katrīna and Grēta: living among all of us
Katrīna is the first participant of the “Friend for a special Child” program. The eight-year-old Katrīna Roze studies in the 2nd form of the Riga Estonian School. The opportunity to study at a regular school is the result of hard struggle, since Katrīna was born with the diagnosis of spina bifida – a defect in her backbone. This diagnosis also means incomplete spinal cord development. Katrīna is paralyzed below the lumbar part of the spine and has already undergone a series of operations. Thanks to physical therapy, tireless work, and high-quality orthoses, the girl can move around in a wheelchair, as well as walk indoors. Katrīna’s daily life is not just about the school and physical therapy – the girl is into many out-of-school activities. She loves drawing, playing with dolls, and training her future assistant – the retriever Grēta. It was exactly a year ago when Grēta appeared in this family as part of the “A Friend for a Special Child” program supported by the BeOpen Charitable Foundation. The dog is taught to provide Katrīna with pet therapy and help the little girl in her daily routine.
The basics of the Estonian language that Katrīna learns at school are very useful. The girl’s orthoses are made in Estonia by local craftsmen.
“Part of her treatment also takes place in Estonia. Whenever we go there, they always give us a warm welcome. Learning that Katrīna studies Estonian, even the strictest and most serious doctors begin to smile, gather around her and start talking to her. Surely, there are still many things she does not understand in Estonian, but it helps to relieve the child’s stress, and make communication with doctors less formal,” Katrīna’s mum Jana comments.
Katrīna’s sister Rebeka has been attending the Riga Estonian School for four years now, so the family decided to choose it for Katrīna as well. However, fighting for the opportunity to study in a regular school rather than a special needs school or a boarding school was not easy. The authorities within the Riga City Council tried every means possible to convince the girl’s parents in favour of the special needs school, but their determination was unfailing – the girl must learn how to live in a real environment among her peers.
“When we decided on living in Pārdaugava, I visited all the local schools there. It was two years of hard work. The Riga Estonian School was the first one that would start speaking with us at all. I wanted Katrīna to learn to live her life, learn to take care of herself in the ordinary environment”, Jana says.
Children who see diversity will grow up to shape a more accepting society
Katrīna’s mum is convinced that not only Katrīna benefits from such a decision, but also her schoolmates. Jana believes that it is important that children from an early age see different people around them – how otherwise will the society learn to accept people with special needs, with disabilities?
“There is a youth centre where Katrīna attends drawing lessons, but the environment is not adapted for easy access by wheelchair users. Sometimes we would meet fathers who bring their children to classes, but noticing me and Katrīna in her wheelchair, they suddenly take interest in clouds in the air or flowers in the garden – as if they can neither see nor hear her. On other occasions, some of Katrīna’s schoolmates would be there and immediately start talking to us asking, whether they should hold the door or help out in some way. A small child cannot do much, but this is a significant gesture that reveals a different mindset, a willingness to work together. As they grow older, children like these will not pretend to be exploring the clouds. They will accept people and their diversity. They will be willing to lend a helping hand”.
The decision to go to the regular school has proved its worth: Katrīna’s progress is good, and despite her health problems, she feels the same as other schoolmates. Katrīna is fascinated with wheelchair tennis (a tennis game adapted for wheelchair users). She also attends drawing classes and ornithological club at the Nature Studies Centre.
The assistant dog specialist and canistherapist Vladislava Akimova trains Grēta, preparing her for the role of Katrīna’s everyday helper. Grēta has already learned to fetch toys and other items that Katrīna herself cannot lift from the ground. During the training process, when offering treats, caressing and stroking the dog, Katrīna has to open her tense palms. Thus, Grēta also acts as the girl’s personal physical therapist.
“Now, in winter, when the dog is mostly trained indoors, Vlada [Vladislava Akimova] works with pet-therapy rehabilitation methods to work on Katrīna’s hands. Grēta is already of great help to us, fetching and carrying different items. Vlada also hopes that in the future Grēta can help Katrīna to get dresssed”, Jana explains.
Grēta is taught to become a dog that helps out Katrīna and her family
Katrīna’s family likes that the cynologist teaches Grēta to be useful for their particular family. One of the reasons why this is possible is that the dog has been trained since the puppyhood, living in the child’s family rather than purchased as being already prepared for the work. “Sometimes there are things that Grēta as an assistance dog should be doing in a certain way, but which does not suit our family. Vlada always finds a different approach – she teaches Grēta what is useful for our family, specifically for Katrīna. When Katrīna was small, she was hysterically afraid of animals, but she got attached to Grēta immediately. Actually, the dog has adapted to the whole family. For example, the elder sister Rebeka, who also participates in Grēta’s training at home, is dancing hip-hop, and Vlada has taught her some tricks to involve the dog in the performance”, mum says.
“The main task for Grēta is to bring various things and objects – dolls or other necessities. Whatever it is, most importantly is that the dog takes over some part of such obligations in the family. In canistherapy, we work together with a physical therapist. Since Katrīna uses her hands to turn the wheels of her wheelchair, her hands, palms and shoulders are very tense. The physical therapist stressed the necessity to move and exercise these parts of the body, so we came up with special exercises involving Grēta. Most significantly, Katrīna is doing all the activities together with her dog gladly rather than perceiving it as a doctor prescribed obligation. It just happens on its own”, Vladislava Akimova comments.
“There is a sweet and affectionate bond between Grēta and Katrīna. Although Grēta is a working dog with specific functions, she is also a favourite pet of the family. Treating her with love and care, playing and spoiling does not interfere with her duties, but, of course, obedience is crucial. Grēta is very well aware when she is given a task or when she accompanies Katrīna outdoors. Walking next to the wheelchair, Grēta has great self-control and is quite a different dog”, Vladislava adds.
Between countless meetings and family obligations
Despite the disability, Katrīna is a friendly, smiling child, and a bubbly personality. She gets her cheerfulness and enthusiasm from her mother Jana. Due to her daughter’s health condition, Jana has become an activist working with children with special needs in Latvia – she fights for the right of all children to live a full life, including those who are born with a diagnosis, to study in ordinary schools and not to be trapped within four walls of their parents’ home.
Suitable and high-quality orthoses is just one of the heavy battles won by Katrīna’s mother, who is actively involved in a number of associations, participates in the meetings of the Riga City Council on environment accessibility issues, as well as operates as a counsellor with the Ministry of Welfare. Jana manages all this work pro bono, alongside her care of three daughters and a three-months-old son.
“We have four children, so management is a big deal. Everything is well-planned. Katrīna has classes every day – therapy or hobby groups. The older daughters go to school, the youngest one – to kindergarten. Everything we do is our own willing, our interests. We want to improve our and our children’s lives”, she says.
The state needs to change its attitude towards children with disabilities
The painful realisation is that families with children who have special needs feel like they are constantly begging for assistance. Surgeries, technical aids that are functional and grounded in modern methodologies are often purchased by asking strangers for help and collecting funds from charities.
“The state should be able to provide these things. Sure, special-needs children cost the government a little bit more. But children like Katrīna, who attends a regular school, will grow up to become highly functional members of society. By investing in these children, the economy will reap the benefits later on”, Jana believes.
The Technical Aids Reform, which Katrīna’s mum is pushing for with like-minded activists, appears to have stalled in the corridors of power. “There seems to be some procurement activity at minimal prices, delivering aids that are of no use given your diagnosis. We might be the last country in Europe to have such a heavy-handed system in place. I have heard of disabled people who have several wheelchairs at home because the government has been supplying them with obsolete trash on a regular basis. Do they need five of them? Two at the most, perhaps, but having one that’s good would be enough. The appearance of a technical aid is also significant – was it written off by some Soviet-era pension home, or is your child actually using a tool that’s contemporary, highly functional and convenient for the entire family?”
See the person, not the wheelchair
Jana admits that the life experience gained by fighting for her daughter’s health and opportunity to get integrated with society has ground her down.
“It took me five years to accept things and grieve properly. Today, whenever I see any nonsense, I have this feeling of protest welling up inside me. To get Katrīna into kindergarten, I have to go to the Riga City Council and all but chain myself to a desk for them hear me out. I used to be so quiet and shy, I couldn’t even say my name out loud. Over the years, this anger has changed me. It has energised me to go out there and make things better. I have only two options – either drown in despair or get going!”
Jana is glad that many things she fought for have brought change to other families as well. “Things that parents have fought for have improved, for everyone. The attitude of other people towards Katrīna – in school and kindergarten – has also changed, but we probably helped make it happen. We have told her story, we have explained things, we have fought for her. So today, nobody sees her as ‘the wheelchair girl’ at school. People see her as a person”, Jana comments.
We must join hands with each other
“In the couple of years since we first helped Katrīna out, we have developed true friendship with her family. This is the way it should be – institutions and organisations with a charitable mission must stick around for the long haul. Only then can they form a deeper understanding of the things that families with special children like Katrīna face every day”, BeOpen Charitable Foundation member of the board Ingrīda Šmite explains.
“It’s been lovely to see how things change for the better over time. A year ago, for Christmas, we enrolled Katrīna as the first participant of our ‘A friend for a special child’ program, which has canine specialists find the best puppy for the job of becoming an assistant dog. Now, Katrīna has friends all across Latvia: Roberts is training Cleo in Valmiera; a guide for sightless Kirils is growing up with his family in Liepāja; small Everts in Riga receives help and guidance from Ori, a puppy that joined him this summer; and Elīna’s life satisfaction has doubled with Corrie, who will grow and learn by Elīna’s side to become her four-legged helper”, Šmite adds.
It is important that everyone – officials, institutional managers, experts, and everyone else who has a kind heart – joins hands and does their part. We need to do our good deeds with heart – not just formally – to help courageous children like Katrīna and their heroic families get a fair chance. If we all contribute, children with special needs will be able to live fulfilled and independent lives like each of us should.
The story of Katrīna and her family was updated in October 2017.
On the photo: Katrīna with her sisters, mother, dog Grēta, and a canistherapy expert Vladislava Akimova.
Photo: Marenda Zapoļska, and from the personal archive