Article in DSA Journal, Spring/Summer 2019

21 Plus

Victoria Hughes, 21 Plus, School Support Service

I was introduced to Katharina Barker by my Portage worker in the summer of 2007 as we both had a child with Down’s syndrome of the same age. We found the mutual support very helpful and supportive and decided to find some other families in the area who might want to share their experiences. We were quickly joined by other parents of children of similar ages and decided, with support from the Down’s Syndrome Association, to make a more formal group … and 21 Plus was born. In 2009 we were joined by Nicky Williams who was new to the area. Between the three of us the group grew and attained its charity status in 2011.

We all found that many of the professionals we were seeing had a limited experience of Down’s syndrome and limited specialist knowledge; on the other hand, we were becoming increasingly knowledgeable and wanted to share what we knew with others.

Our primary focus was supporting families. We wanted to build relationships within the group – between adults, siblings and the children with Down’s syndrome themselves. We had coffee mornings, parties and trips together.

Education was our next focus. We all felt that the experience our children and families had at school could be improved. We invited specialist speakers and began our annual education conference which we still hold each autumn. We also began to offer workshops for families and schools, depending on need; understanding behaviour was a common theme!

The group continues to grow and we are delighted by the number of families who find us within the first couple of weeks of their child being born.

Our concern about the provision of speech and language therapy was the next issue we addressed. Nicky and I undertook co-worker training with Symbol UK and in 2012 Talk Time opened its doors. We started with a handful of pre-school age children. Eight years later we have been joined by Rebecca Cherry and regularly see 20 children, aged 6 months to 6 years, in four groups each Wednesday during term time. The children who are at school bring their teaching assistants with them while the parents/grandparents go for coffee and have a chance to chat and eat cake.

Our next mad plan was to offer speech and language therapy (SALT) to children who were too old for Talk Time. We ran our first intensive SALT summer camp in 2015. 20 children, aged 5 to 16, took part in sports with structured input from Symbol UK therapists. This summer was our fourth camp and this year we were joined by Whole Child Therapy who offer occupational therapy (OT) and sensory input for the children. We also invite occupational therapy and speech and language therapy students to take part in the summer camp as volunteers, working with the young people. It gives the students a great opportunity to gain some experience of working with children with Down’s syndrome.

Our most recent development has been our school support service. The service has been running for two years now and focuses on supporting schools, providing training, sharing resources, observation visits and targeted training for reading/ behaviour etc, as requested by schools.

To ensure all our activities/services are accessible, most are free for members or carry a minimal fee to secure booking. The school support service is offered at no cost to local schools. We are lucky to have brilliant families who regularly run marathons, jump off bridges and have crazy plans for raising money. Our summer camp receives huge support from a local company, Blackwood Engineering and from the National Lottery.

Even though the group is busy and there are always plans brewing, the primary focus of the group remains firmly on supporting families, sharing information and increasing the knowledge and skills of the families in the group.

In the future, we plan to grow our summer camp to include a residential experience for our older pupils and increase the number of places available for our younger children. We would also like to develop a regular youth group including some SALT input and also SRE alongside opportunities to develop friendships.

Quotes from our families

We have been attending talk-time since Efa was six months old. The support of 21 Plus, and Talk Time specifically has been invaluable to us. Participating in the weekly sessions has meant that Efa, who is now 5, started school with a whole range of skills, and because we attended with her it’s given us the knowledge and experience to also practice these skills at home.

Mum of Efa – 5 years

I’m so glad that I found 21 Plus and in particular the weekly Talk Time sessions. Tomos is very young still, but with regular input I have no doubt these sessions will help his communication. However, I have learned a lot and find the support offered invaluable. As a relatively new parent to a child with Down’s syndrome, it’s so nice to have somewhere to go, to meet likeminded people, and to be able to talk about any concerns in a nonjudgmental setting. I can’t thank 21 Plus enough for the work they do to help our children and support families as a whole.

Mum of Tomos – 6 months

Talk Time has been crucial in my son Hari’s development. Victoria and Katharina have worked so hard to help me to help Hari and give me ideas and strategies to help Hari with the sensory issues he has with his mouth. Talk Time with Victoria teaches Hari to sit and listen and to respond accordingly trying new sounds and signs and to wait for his turn. He has learnt new songs whereby he has to use and touch areas of his body/face that perhaps he wouldn’t have done so willingly before. Blow into a flute and blow bubbles. I have learnt new skills and understanding surrounding Hari’s behaviour and why he may feel frustrated. We have both learnt new signs to help express emotions and how important it is for Hari to feel self-worth through helping his family as opposed to always being helped. Talk Time is a fantastic group which we could not do without. Hari has come on leaps and bounds since Victoria has taught Hari and we are so grateful.

Mum of Hari – 4 years

We attend talk time every week. Not only has it helped my child’s speech and language but they have given first hand support about everything and anything you could need when it comes to raising a child with Down’s syndrome. No question is too stupid or obvious. They have supported us with behaviour, toilet training and listened to my worries over the constant coughs and colds. Talking to other parents and meeting other children with Down’s syndrome provided me with much needed insight when our beautiful little girl was born. I can’t thank them enough.

Mum of Lauren – 3 years

Two families united by 21 Plus

Without 21 plus this friendship wouldn’t exist! Friends for over 7 years these three girls have grown up together, will carry on growing up together and be lifelong buddies. It’s not just the girls who have found friendships but also the mummies and daddies. Living with a child with Down’s syndrome is different but within the 21 Plus family it’s normal. I have attended 7 education conferences, 3 speech and language summer camps, Numicon training, sensory processing training, weekly Talk Time sessions for 3+ years, accessed the school support service.

I was lucky I found 21 Plus right after being given the diagnosis that my daughter had Down’s syndrome when she was 72 hours old. The team who run the support group have supported, advised, helped us through our time of searching for answers and showed us that it’s ok. They are a massive part of our lives and I cannot imagine what it would be like not having them there to help. Thank you Katharina, Victoria and Nicky.

Mum of Katie – 9 years

21 Plus have been a lifeline to our family when we felt we didn’t belong anywhere. All of their services have been of benefit to us and the team supporting our son. Talk Time was so important in getting our son ‘school ready’ – helping with communication skills as well as with social skills. It was also a key source of support for me as a parent, somewhere I could get advice and be with people who shared my experiences. The education conferences and school support services helped my son’s mainstream school to provide appropriate support and to become more confident. It has helped me to understand what I needed to do to help my son with his learning and development.

The amazing Sports Camp provides a fully inclusive environment, showcasing lots of sports our children can take part in and raising aspirations. It reminds us of our children’s abilities, rather than disabilities. It also provided the ultimate respite – much needed time to step away from the parenting role, knowing my son’s needs would be fully met. The advice from professionals at Sports Camp and workshops has been an important part in helping with some of the more challenging aspects of our son’s development, including his eating disorder, continence and sensory processing.

Social events, such as the Christmas party, provide an opportunity for our son to truly be himself with children who are like him and for parents to socialise and share advice. Being a parent of a child with special needs can be a lonely path but 21 Plus means I know there are others walking that path with me, sharing my challenges and celebrating successes. They provide somewhere where my son isn’t different. 21 Plus helped me find my tribe.

Mum of George – 7 years