Deidre Clark, a specialist speech and language therapist with more than thirty years experience of working with adults and children with Down’s syndrome came to join us at our October meeting. Deidre works for an organisation called Symbol UK and is based all the way down in Kent.
Symbol UK was set up in 1998 as a ‘not for profit’ organisation that provides specialist speech and language services to children and adults with learning disabilities but particularly with Down’s syndrome. They also provide consultancy services to other organisations and specialist training to other health professionals working with people with learning disabilities. The managing director of Symbol, Tessa Duffy, is the speech and language advisor to the Down’s syndrome Association and is also mum to a young man with Down’s syndrome.
Deirdre began the day with a presentation to parents called ‘Developing the communication skills of children with Down’s syndrome’, the slides for which are available for those who missed it. Research has shown that people with Down’s syndrome will have specific communication challenges including the ability to understand speech, produce language and to put words together into sentences. This will make it difficult to communicate needs, feelings and particularly events which have taken place.
Whilst people with DS will be less able to remember and repeat words, they have strong visual memory which can be supported by the use of signs and symbols as language develops. One of the statements which stuck with me most was that people with DS have a learning ‘disorder’ and will need support to overcome communication challenges – this is not a learning ‘delay’ which will resolve eventually with time. It also struck a chord with me that whilst we know many children with DS are born with poor muscle tone and have regular physiotherapy to help strengthen muscles and meet milestones like walking, very little information is given to parents on strengthening jaw muscles to help with tongue placement and sound production.
Whilst all the information Deirdre covered is evidence based, it was nice that she could share some of her personal experiences with us from the beginning of her practice in the dreadful ‘long-stay hospitals’ to helping Tessa look for a secondary school for her son.
Following the presentation, the children were divided into three groups according to age so Deirdre could demonstrate some group work and activities to help support speech and language development. There was also an opportunity to speak to Deirdre about any specific issues including eating and drinking problems.
During this extended meeting Phil and Rachel Shatliff kindly arranged a lovely lunch to keep us all sustained and I must say a big thank you to all the family members and siblings who helped keep the children entertained – it could not have been a successful day without you!
On a final note, Symbol provides training for a co-worker network which increases the availability of speech and language therapy. Under the supervision of a registered S&L therapist, parents or carers can become trained to provide regular therapy sessions within their group. I hope this is something we can consider and work towards providing in the future!