We are delighted that, with your help, the lead therapist at our Moldovan partner, Rain Kids, has been able to start her studies to develop her skills in working with autistic children. A particular focus of Ana’s traininng has been early intervention with young children aged between 12 and 48 months. We all know how vital these early years are for child development. Providing early support can make a great difference to an autistic child’s communication skills, their behaviour and relationships in the family. Rain Kids are finding that more families are coming to them with their concerns at this early stage, so it is very positive that our colleagues now feel better equipped to help them.
Valentina Balobanova, who runs the Deaf Club we sponsor in St Petersburg, was doing her shopping recently when a woman stopped her. This was Nina, who used to go to the Deaf Club with her son Nikita. He is now twenty, but his mama still remembers Valentina and the Deaf Club. The meeting prompted her to write a thank you letter to Valentina, the other staff at the Early Intervention Institute, and to you, the donors who keep the Club running.
“I would like to thank the Early Intervention Institute and Valentina Balobanova for the great help they gave me and my son son. A few words about us. My name is Nina Nikitina and my son Nikita was born in 2004. A year later, I found out that he could not hear and he was diagnosed with hedrocephalic syndrome (which was cured). Well, it would be an understatment to say that it was a tragedy for me. My world simply collapsed. I was raising him alone, and I had absolutely no idea what documents needed to be completed, or what to do with all this. Somehow, by chance, while sitting in the hallway of the audiology center, one of the mothers told me about the Early Intervention Institute. She told mme that they have an excellent diagnostic service there, and run classes. After some time, I realized this meeting was an incredible grace of God. Having come to the center, our family found care and friends with the same difficulties. I found out where to go, what documents to fill out, what benefits I was entitled to, and where to get his hearing aid serviced. Basically, I learned everything I needed here. I have never met such warm people before. We didn’t miss a single class or event that took place at the institute. This became our second home. I want to thank the sponsors who make this possible from the bottom of my heart. You do an incredible miracle for us, such families, children.”
Many of the stories in this issue are about the difference your donations are making to disabled young people. We have Ilya, who is suprising his mother by making great progress even at the age of 27. We have news from Rain Kids in Chişinău, Moldova, who are benefitting from training for a key member of staff.
Our Christmas appeal this year is to help Adelina and other children who like her have special needs in Calarasi, Moldova. Can you help us raise £5,000 to fund a speech therapist and a special needs teacher for one year?
Adelina (on the left in the picture) is 9 years old and has Down Syndrome. She struggles with language and communication, but these difficulties don’t stop her from being eager to express herself and trying to make herself understood. She loves music and will arrange the other children in a circle while she pretends to play the guitar or claps along with her favourite songs. The children watch her and even applaud at the end of the song.
This year our Christmas appeal aims to raise £5,000 to pay for a speech therapist and a special needs teacher to support children like Adelina. Read on and you will find out how the team at The Wish Centre are helping Adelina flourish.
Andrei is 21 and he has Fragile X Syndrome, which affects his learning ability. He has been coming to Communication Space for group and individual sessions for more than ten years.
Alternative Communication is helping him in so many areas of his life. He uses the centre’s visual timetable and timers to understand what is going on through the day, which helps him stay calm.
He continues to make progress with his communication book. He can put together simple phrases and knows around 300 symbols. He can ask for help or ask for a break if an activity is getting too much. He has even started keep fit exercises using visual prompts. Now Andrei is working on the skills he will need to start using a tablet to communicate.
Communication Space write on their website:
People think that it’s all good here. And it really is good. But it didn’t happen by accident. It is the result of our accumulated experience and constant effort, which we put into creating a welcoming space, building a good team, putting together our programme, establishing our relationship with families. It’s good here because we don’t rely on formal interactions where the teaching task or organisational task is the most important, but on humanity.
What is for sure is that without the ability to communicate, it would all fall apart. Finding ways to communicate with those who can’t use speech is the key.
Since we started working together, The Rain Kids Centre’s goal has been to improve the quality of the therapy they are able to offer children with developmental disabilities, such as autism. St Gregory’s has been funding supervision by an experienced therapist from Romania. She has visited to observe the work of the centre and provide training sessions.
7 year-old Gordei has been making great progress with his communication book thanks to the skilled professionals at Communication Space.
St Gregory’s works in partnership with Communication Space to introduce alternative technology to Russia to benefit people with disabilities. Gordei is one of the children who has recevied bespoke teaching, opening up new ways of communicating.
Gordei has cerebral palsy, which affects his ability to speak. fortunately, his parents found Communication Space, and he is now learning how to use PECS – a language of visual symbols contained in his communication book.
Until recently, Gordei would only use one symbol at a time. He would rely on the person he was “talking” to being able to guess what he meant. The therapists at Communication Space have made some simple adjustments to the way the symbols are arranged in his book, and now he is putting two or even three symbols together in phrases. Recently, in answer to the question, “How are you?”, Gordei answered “bad” and then himself found the symbol for “cold”. It is already becoming easier for those around him to understand Gordei. The solutions may seem simple, but it takes skill, empathy and patience to make this kind of breakthrough. We are so glad our colleagues are helping train others so that many more children like Gordei can express themselves.
The journey from Chişinău to Călărași was just over an hour to The Wish Centre for disabled and autistic children and youths. This centre is a beacon for many local families who are raising children with special needs. Currently it is the only place in the region they can turn to for help and guidance.
Eugenia, who is just over 30, saw her life take a dramatic turn a decade ago when her sister lost her parental rights, and Eugenia found herself looking after her niece Ana, a baby with Down syndrome.
If you have young children in your life, you have probably come across the “That’s not my” series of tactile books. The chances are you won’t have seen them in this format.
This spring, our colleagues at Communication Space have been leading workshops on how to adapt books for those with multiple disabilities. The changes may be as simple as making pages easier to turn, or they might involve translating text into the PECS language of symbols used by some non-verbal people. As ever, the adaptations are simple, achievable and tailored to the specific needs of each person.
28 professionals and parents took part in the course and between them they made more than 50 adapted books.
In the last couple of months our partners at The Wish in Moldova have been supporting 18 disabled children. Each one of them has a personalised care plan and has benefitted from speech therapy, ocupational therapy and specialist education to help them develop their thinking skills. Two thirds of the families come from rural areas. These areas are already poor, but having a disabled child usually makes it impossible for both parents to work. When a child isn’t able to go to school someone has to look after them. Those who live in the countryside also find it harder to access all kinds of services. Where possible, The Wish provides free transport. Very sadly, they can no longer offer this to everyone who needs it, which means some families are missing out.
