Isobel was born in December 2014. Through the newborn hearing screening programme, Isobel was diagnosed with a mild to moderate hearing loss. Isobel and her parents started their auditory verbal journey just over six months ago, and here her mother Selena shares her story so far…

“Isobel failed the newborn hearing screening at birth, and shortly after that she had an audiology appointment at our local hospital where they concluded that she definitely had a hearing loss. She was given hearing aids when she was about three months old, so she was aided very young.  I was very keen that because of her combination of learning difficulties and hearing loss that we aid her right away. We had been advised by the Down’s Syndrome Association to make sure that she was given the chance to hear as early as possible.

Isobel’s hearing loss deteriorated. When she was first diagnosed it was a mild to moderate and eventually it fell to a profound loss. Every time we had the hearing aids turned up, we’d go back and she still wouldn’t be able to hear properly.

The audiologists still don’t know what caused the decline of her hearing. They know that one factor is glue ear, as this is a common condition for children with Down’s syndrome, but they know that there’s something else too. They think it may be structural.

Isobel recently had grommets inserted to deal with the glue ear, which is great as we have seen a positive impact from dealing with this specific problem. But the underlying issue is still unclear and may stay the same or get worse, so it’s still not certain as to what we are going to do next.

Isobel absolutely loves her auditory verbal therapist Vicky and she really engages with her and with the toys during our appointments. Isobel is very, very sociable and really wants to communicate. So despite her limited vocalisation, she’s extremely motivated. The fact that during the session we are communicating with her non-stop and giving her the chance to try to communicate back is great for her. She thrives in this environment. It’s not a ‘therapy session’ for her; it’s simply undivided attention from someone she finds engaging.

I’m sure the fact that we started with auditory verbal therapy so early on has really helped Isobel. To teach her that noise means something and that there is a value in listening – that has been a massive, massive benefit for her. It’s also taught us, her parents, how to teach her, so we’ve been able to put everything we’ve learnt from Vicky into practice right away, helping Isobel engage with people.

There’s a lot of encouragement for children with a learning difficulty to use sign language as a means of communicating. We’ve had some really interesting and helpful conversations with the team at AVUK who understood that we were receiving a range of advice. Vicky was happy to discuss all the communication options and together we came up with a solution that has made us even more confident that the AVT approach is right for Isobel.

We do sign*, but we sign much less than we maybe would have done. We encourage Isobel to listen first and then we might sign, and then we encourage her to listen again. We’ve taken this approach because of AVUK’s advice. So we’ve found a middle way that works for us as parents, which we think works best for Isobel, and which also feels right for George, her three and a half year old brother.

My husband and I have had so many proud moments with Isobel, I think because it’s so difficult for her. She works so hard, so you really appreciate every achievement, no matter how small it is because she has to climb a mountain to get there.

Sharing these moments with an expert like Vicky is really wonderful because it’s obviously really difficult for family and friends to have her depth of understanding of what we’re going through and how hard it is. Vicky will celebrate the moment when Isobel utters “mmm” which is what she’s learning at the moment, and realise how absolutely massive that is.

Vicky has really taught us to celebrate those tiny moments, to show Isobel that she’s just done something that really matters, so she’ll do it again. Because of the support we’ve had from Vicky, we know that for Isobel, making a vowel sound or just listening intently to us, are really special moments that we might not otherwise have noticed. So I think our proudest moments are simply our everyday interactions as a family, most especially the ones between George and Isobel.

 

*Vicky explains

Isobel has access to spoken language through her technology. At AVUK, we have supported Neil and Selena in helping Isobel to progress so that she can now use her voice on demand and she uses her listening to vocally shape her own sounds for the words she hears. Isobel now understands a variety of single words through listening and she has just begun to spontaneously use her first words. We encourage parents to make the most of their child’s listening skills through the use of their technology in the first instance. 

With optimal technology and effective early intervention, we expect that a child will make developmentally appropriate gains in spoken language. If the AV approach is viable in supporting communication development,  a child and their family will move forward in the programme. The diagnostic training of the AV therapist together with the partnership between the therapist  and the parents, means that if a child needs to transition to a different approach, this can be achieved through a fully collaborative process.