I was sent to York last week. Beats Coventry, I suppose. My reason for being drafted up north was so I could be a NDCS volunteer at an event and provide last minute additional support to a deaf young girl with autism. Whilst I’ve done one to one support before, this was the most challenging experience I’ve had yet. The girl had very limited language skills and was unwilling to engage with other children or with any of the activities. She also refused point blank to wear her hearing aids and had a tendency to sometimes suddenly run off. This made for excellent training for my half marathon in October. The girl literally seemed to live in her own little world. That said, she has a mischevious streak to her which always made me smile. Other children made the effort to engage with her and help her get used to the new environment. It was quite sad to see her go. I hope she enjoyed the event; it was definitely a rewarding experience for me at the end of it all.
The short time I spent with her was a stark reminder of the extra difficulties that children with additional needs face. Reliable figures are hard to come by but it is estimated that 40% of deaf children have additional needs. Some of these needs are incidental to their deafness – like speech and language delay. Other additional needs are obviously more severe and are more of a challenge to parents.
The feedback we hear from parents is that if there is a postcode lottery in the provision of support to deaf children, in many areas it is even harder to find a professional who is aware of the needs of children with complex and multiple needs and is able to provide tailored support. There are also known to be challenges in getting professionals from different teams to work together and provide a joined up service. And finally, there is the risk of ‘overshadowing’, where a professional focuses on one need only and pays less attention to other needs.
NDCS has a booklet for parents of children with additional needs which has much more information and advice on this issue.
The challenge for me as a campaigns officer is to not to forget deaf children with additional needs in our campaign work and literature, and to make sure that nobody falls through the gap – every deaf child matters, after all.