On 19th December Lumos hosted a special Christmas event for children with disabilities, together with the Regional State Administration in Zhytomyr and local NGO Autism Zhytomyr. As well as bringing some of the magic of the season to children and their carers who have faced an unimaginably difficult year, we also wanted to shine some light on the importance of developing specialised services in the region.
With professional actors from the local theatre providing some Christmas entertainment, the children listened to a festive telling of the legend of St. Nicholas and were treated to the appearance of a Christmas angel and a dance performance. Then it was time for them to get involved themselves, learning a fun dance routine for the song “Christmas Fir Tree” and playing several different holiday games. Finally, the event concluded with sharing Christmas greetings and gifts.
What does Christmas mean?
For the children and their carers who attended the event, Christmas means one very important thing. “It means to be with family,” we heard over and over again, “Christmas holidays help us all to be together again – we try to visit everyone on this holiday.”
It is for many also a time to celebrate with food and family traditions, and the families who attended the event spoke about some of the dishes they enjoy at this time of year, including meat and fish dishes, olives, holubtsi (stuffed cabbage), kutia (a traditional Christmas wheat berry pudding) and poppy seed cookies.
Celebrating Together
We heard from several carers that these children rarely get the chance to participate in events such as these that take their needs into account. Transport is a leading obstacle, particularly for children who find movement challenging, so for this event we arranged transportation for families who otherwise would have been unable to attend. The war has also proven to be a huge barrier. One mother explained: “Now we have few opportunities to go out. We used to have more opportunities but with the war everything has changed. Many parents and children were displaced and had to leave their homes. Nowadays there are few events for children with special needs and disabilities.”
10 year-old Dasha* has been in the hospital several times since the war began. “It’s very important for children and parents to have such an opportunity as today,” her mother says. The event has been able to give carers some respite. “It was possible to have some kind of rest while my daughter enjoyed the holiday, and even jumped with excitement,” she continues. “This is important for us because I am with her 24/7.”
Dasha normally lacks companionship of children her own age, as she is in an individual education programme. “She was extremely happy to communicate and interact with the other children and even St. Nicholas. That performance was a real holiday for her. She was extremely happy.”
We asked Dasha which part of the day she had enjoyed the most. “I liked the bubbles!” she answered joyfully.
After a difficult year, it’s so important that children have this opportunity to be children and enjoy the festivities. Bohdana was delighted by the reaction of her son, who is autistic and hyperactive. “There were a lot of bright lights around my son, and I saw the bright eyes of my child, full of positive emotions – he was really happy and participated in the event with huge interest.”
A FESTIVE WISH
At the end of the event, we asked participants what their Christmas wish is for Ukrainian children. All answered the same thing: “Peace.” But there was another wish that shone through today: the wish for family. One mother expressed her fear that children who have lost their parents in the war would be placed in residential institutions. “I wish for them to be placed in families. I want that all children can be kissed by their parents when they go to sleep.” “Family is the most precious thing in the world,” agreed another.
Sadly, living with family is not something all children can take for granted. Lumos is working to reform care systems around the world, and to tackle the causes of family separation. Disability, poverty, and conflict are unfortunately the leading main drivers that cause children to be placed in institutions. But with the right support and resources, families can look after their children where they belong – at home – and experience the magic of Christmas together for many years to come.
Zanna Zarichna, head of Autism Zhytomyr, is herself the mother of a child with disabilities and knows first-hand the importance of events like this. She said: “Today I felt happy and relaxed, and even calm and hopeful - despite what is happening in our country. I really hope and believe that our partnership will help develop beneficial services for children and families.
“What was really important about today is that the needs of each child were considered. Today it was comfortable for children in wheelchairs and for other children with extra needs and who are often especially sensitive to everything. It was really lovely. I did not want the holiday to finish!”
You can support more activities like this by making a donation to our Ukraine Appeal below. 100% of your donation will go directly to our projects supporting vulnerable children and families.
*Names changed.