A parent’s story: Increasing independence in a child with vision impairment and additional needs

Post date: 
Tuesday, 25 October 2016
Photo of Ben with his dog

Colette Siney, a parent whose child has vision impairment and learning difficulties, shares how she helped her son develop vital social skills to become more independent.

My youngest son Ben (pictured), now 13, was born with WAGR 11P deletion syndrome, a rare genetic syndrome with approximately four hundred known cases worldwide.
WAGR stands for:
  • Wilms' Tumour, the most common form of kidney cancer in children
  • Aniridia, partial or complete absence of the coloured region of the eye (the iris), meaning the eye isn’t able to adjust to differing levels of light which can result in poor vision and light sensitivity
  • Genitourinary abnormalities, and
  • Retardation, now known as developmental delay.
Ben also has nystagmus, continuous uncontrolled movement of the eyes. Unlike his older brother, Ben failed to meet his milestones and required intervention and support from numerous agencies during the early years of his life.
I decided that Ben would attend the same mother and toddler groups and play schemes as his brother, as I felt they were good pre-school educational and social settings to develop the important social skills children need when attending school and mixing with peers. Luckily we had a fantastic portage worker (someone who provides home-visiting educational services for children with additional needs) and qualified teacher of children and young people with vision impairment (QTVI), and we were able to secure one-to-one support to help Ben get the most out of these settings.
From pre-school, Ben attended a mainstream school in our local village, again with one-to-one support and a small class size of children whose parents were very supportive of him and me. During the early years in school, he was invited to birthday parties and included in play sessions. I always encouraged Ben to play with his friends, modelling behaviours for him, but unfortunately due to his vision impairment and autism, he has always preferred to play alongside his peers rather than with them. Unfortunately growing up with a developmental delay, we watched Ben’s friends develop and leave him behind. While this has been difficult for Ben, his close knit friendship group were very patient and keen to help him remain friends with them.

Over time, we learnt that by keeping Ben’s social group small (three to four children) he was better placed to be confident with who he was playing with and able to remember names and details.

Moving Ben from a mainstream school into a special school was a difficult decision, however over the past four years he has grown as a person and I think this is due to having friends with similar needs to him. He regularly attends the school’s after school club, which is run once a fortnight. Ben is a very energetic boy and always in the middle of any activities, which can include football, cricket and computer games. The club allows Ben to socialise in a safe and familiar environment and make independent decisions.
Unfortunately, outside of school hours have been quite isolating for Ben. He is unable to play outdoors with local children due to his additional needs, which means most evenings are spent watching television or playing on his iPad or Xbox. His older brother has attempted to include Ben, but this often ends in conflict as Ben requires lots of support to integrate with peer games. As both of them have grown up this situation has eased. They share more in common now, both love their Xbox games and listening to music, and Ben feels less isolated as his brother doesn’t go out as much.
Our family has had support from various charities, including a charity called Useful Vision that runs lots of different events for children with vision impairment and their families. In the ten years since it began, Ben and his brother have taken part in snow-tubing, swimming, Christmas parties and various trips to zoos and wildlife parks. We regularly see the same families at these events and have built up a good friendship base of children and parents. Ben enjoys these social gatherings as they allow him to expand his life experiences with people he knows in a safe and secure way.
Since the age of eight, Ben has also attended a monthly group run by Useful Vision which focusses on life skills. He has made friends within this group and looks forward to going. Ben loves the cookery sessions, which are run with the help of a rehabilitation officer whom Ben has worked with for most of his life. Ben enjoys cooking more than anything else and this group is small, with the same four children regularly attending. The skills he has learnt here have transferred not only to home, but also school where he has been able to demonstrate some of the skills he has learnt.

Growing up with a significant vision impairment and learning difficulties has been hard for Ben, he finds mixing with unfamiliar people awkward and retaining friends hard to do. The best thing to happen to Ben was being paired with his guide dog two years ago. This has allowed Ben to develop a level of independence previously denied to him.

He has been able to learn the route to his grandparents’ house which allows him to visit them independently, but most of all it has given him the confidence to speak and interact with people on a daily basis. Ben is always happy to talk about his guide dog to anyone who is interested. Ben’s confidence has grown as a result and having a guide dog has forced him to tackle situations he would previously have shied away from.
My role as a parent has been tough at times, it would have been easy to allow Ben to hide away in our house and become isolated. I feel my role is continually changing and as Ben gets older he will need additional support to access transport and develop life skills to become more independent. Working closely with Ben’s school will hopefully allow us to support him as he becomes a young adult and moves from school to college to further his education.

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