Making books accessible

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.

Communication Space make communicating worthwhile

When talking comes easily to you, it’s hard to imagine finding it so boring, you just can’t be bothered. However, until Pavel started sessions at Communication Space, boredom was seriously holding him back.

Up until last year, Pavel had taken part in various programmes to help him communicate. These even included using alternative communication, since he doesn’t talk. However, the same pattern would emerge each time. He would learn some simple symbols, they would enter his vocabulary, but then he would get bored and stop using them. He was getting quite disengaged with the whole thing until Communication Space tried a new approach.

Continue reading Communication Space make communicating worthwhile

Meet our new Moldovan partners

In Moldova only 26% of the population believe that people with special needs should be included in their community. Like other ex-Soviet countries, Moldova has traditionally relied on large institutions to care for disabled children and adults. This has left communities wary of those who are different, and families with very few support services.

St Gregory’s has a history of championing inclusion in this region. We look forward to working with our new partners to give families access to the kind of support which will affirm their children’s value and help them reach their potential.

On 28th November, Giving Tuesday, there is a great opportunity to help. You can help us win a share of $1,200,000 by donating on that day via Global Giving.

We also have tickets on sale for our online talk on Ukrainian art and architecture from an esteemed curator, Alexei Leporc, at The Hermitage Museum. 

The Wish (Dorintsa) is based in Călărași. They provide therapy and education for children with additional needs in this mainly rural area.

Sunny Corner (Plaiul Soarelui) runs a farm in the Moldovan countryside, where young people with disabilities can get involved in meaningful work and social activities. We are delighted to have co-sponsored a ball for their families, and young people with learning difficulties from further afield, including Ukraine. Parents talk of how the event made them feel visible, and brought great joy to their children.

Rain Kids (Copiii Ploii) is based in Chișinău, the capital of Moldova. The charity provides therapy to children with special needs. Together we are tackling the skills gap by funding additional training for their therapists.

How A-Tech has helped Sasha

Our partners, Communication Space Centre in Moscow, support children and young people who do not communicate verbally. We support their Alternative Technology programme, using hi- and low-tech means to make communication possible. We are delighted that they have been able to move to bigger and better premises recently.

Sasha is one of thirty children and teenagers that Communciation Space help with regular one-to-one and group activities funded by St Gregory’s Foundation. Sasha is 14. Like all Communication Space’s young people he does not communicate verbally. He also has learning, emotional and behavioural problems. In just six months, Communication Space have helped him make great progress.

Continue reading How A-Tech has helped Sasha

Kondopoga’s inclusive summer activities

This year, the summer camp started on 6th June and the Parish is planning to continue summer activities until 31st August before children return to schools in September. 

Currently up to 18 children benefit from the summer camp, 15 of them are disabled children with a range of disabilities: learning disabilities, autism, cerebral palsy, eyesight problems, heart and lung conditions and 4 children are from poor families. All came from the Kondopoga region, the youngest is 6 years of age and the eldest is 15. 

At the beginning of the camp, there was a slight problem with finding volunteers, which  has now been resolved – 2 people help in the kitchen and 3 help run summer activities. One of these volunteers came from ‘ Zabota’ (Care) social centre. 

Every day is organised differently, with different activities such as sewing, drawing, clay modelling, educational games and outdoor games. The camp is also somewhere their parents can get advice, consultation with specialists and volunteers at the Parish and most importantly moral support and a boost to their family budget. Depending on the weather,  lessons are held outdoors and this helps to boost the children’s physical stamina. Masterclasses are held for children to create their own masterpieces in needlework, drawing and applique. Everyone is particularly excited to spend time with Danae, the dog of one of the volunteers who made friends with all the children last year. The children enjoy joining in theatre performances too. 

The Parish is also planning to provide children with school supplies for the new school term.  

Vadim’s story

Vadim

Our partner organisation, Sunflower, supports young people who grew up in children’s homes. For many, the support group is the best way of supporting them. For some with complex needs, a period of individual support, either on its own or alongside the group, is more appropriate. This individual help can be in the form of counselling or helping to resolve practical issues.

Vadim is 19 years old and is one of those being supported individually, as well as being part of the group. Sunflower have worked with Vadim for about a year and a half. During that time he has moved into his own flat, left to him by his parents.

Read more: Vadim’s story

Our colleagues are working on a whole range of issues with Vadim. Firstly, they are helping him understand which documents he needs and why. They are helping him go through a medical commission so that he doesn’t lose his disabled status. In parallel, they are working with Vadim to help him understand and accept his special needs.

Again, on a practical front, our colleagues are working out with him what maintenance work is needed on his flat and how he can make it comfortable.

Most urgently, because of his special needs, Vadim finds it difficult to build safe and trusting relationships. He has often been taken advantage of by so-called “friends”. He is the first to admit that he can’t say “no” to them. “I am afraid they will kill me if I don’t give them money.” After the last incident, our colleagues helped Vadim understand how he could avoid this kind of situation, and where he can turn for help if he feels threatened.

For Vadim, the next step is helping him to find a job and adjust to working life. We wish him well.

Counselling for special needs parents

staff member from Communication Space with a parent

Back in the first lock-down of the pandemic, we helped Communication Space set up an online counselling service for parents whose children have special needs.

The pandemic crisis may have passed, but parents can still easily find themselves overwhelmed, particularly in a society that has little positive to say about disabled people. So we have continued to fund the service, and are delighted that a second, local funder has also been found. This means that more families can be reached – 109 families in the last year. Each family can access a course of individual counselling as well as support groups led by psychologists.

Read more: Counselling for special needs parents

The feedback we have is very positive. Yulia wrote,

” I need these groups because they help me feel more stable. This influences how I feel about my child’s special needs, my relationship with the professionals we work with, and relationships within our family. In the end it influences the quality of my choices for child’s education and socialisation.”

Natalia can point to a very concrete improvement in her quality of life. Thanks to the course, she has been able to improve her relationship with her mother.

We are also delighted that Communication Space have been able to set up a training flat. Sergei stays the night once a week with other young adults. This is the first time he has slept anywhere other than at home. At first he found this distressing, but now he is much more settled. While Sergei learns valuable life skills, like cooking, his mother Lydia gets some essential respite. For the first time, she has time she can call her own, to get things done, to spend time with her other children, or just to rest.

Winter newsletter out now

Our winter newsletter is out today. Download it to read about:

Kondopoga Parish welcomes disabled children

Group of children, volunteers, parents and the very popular dog.

Last summer was a very special one for the Parish of Kondopoga, Karelia. An easing of restrictions allowed the summer activities to go ahead and the Parish invited ten disabled children and their parents to join the summer programme for children from disadvantaged families. As the weather was warm and sunny, most lessons and games were held outdoors and children learned new skills and made new friends.

“What a wonderful summer! We all enjoyed meetings, friends, laughter and a wonderful atmosphere at the parish. A huge thank you for this support dur- ing the hard time of covid. We also received food, shoes and school uniforms. We are looking forward as a family to growing more with the parish and cannot wait for next summer.”

Food parcels and books and school uniform for the new school year were also distributed by the parish to local families living in poverty.