‘The therapist believed in Ana-Lily from day one and pushed her’
Mark Ferguson’s daughter Ana-Lily (8) struggles to communicate because of a condition called dystonia. The family lives in Craigavon and Mark (37) teaches in Sperrinview Special School. His wife Delia (36) is a full-time carer for their daughter.
Dystonia is the name for uncontrolled and sometimes painful muscle movements or spasms.
It can start at any age and little Ana-Lily, who is a primary four pupil in Fleming Fulton School, was diagnosed at the age of three months.
She experiences constant involuntary movements and is unable to walk, crawl or talk and her head has to be supported.
Her father Mark explains how the condition affects the quality of his daughter’s life: “It is a physical disability that impacts on her day to day life and her wee body can’t do anything for itself.
“She does have the ability to learn but needs an awful lot of stimulation because she can’t engage in activities for herself.
“At school she likes the other children around her playing and she enjoys watching them. It is very difficult to watch her become frustrated because she can’t do things that she wants to.
“She does have quite a high tolerance of her disability but she will reach out and try to grab something, but physically she just can’t.”
Of all the people — doctors, nurses, physiotherapists, teachers — who have an input into Ana-Lily’s life, her father says for him the most important is her speech and language therapist.
“Looking at her people might think she has no potential but her speech and language therapist believed in her from day one and pushed her,” he says.
“She has surprised us by what she has achieved and it has given her a way to communicate with us and others around her.
“She is non-verbal but she can vocalise some things now. She can laugh and giggle and let us know when she is frustrated by giving off.
“The speech and language therapist has used eye gaze technology using a computer screen and a mouse which she controls with her eyes and that has opened a new world to her.
“Using pictures on the screen, Ana-Lily can look and choose what she wants to do. It is allowing her to communicate her needs and it is absolutely unbelievable.”
Mark is impressed by just how much time the speech and language therapist spent working with his daughter to establish just how much Ana-Lily does understand.
Using the computer images has opened up a whole new world of choice for Ana-Lily and a way of communicating with her parents and those around her. Mark adds: “It has made a huge difference to her day-today life. We would say that the speech and language therapist has given her a voice. She is a wee individual who has a wee personality of her own.
“You want to see your child making progress and achieving goals and her speech and language therapist sees her as someone worth trying hard for and she opened our eyes to AnaLily’s potential.
“Of all the people she needs in her life, I would put her speech and language therapist at the top in terms of the importance and impact on her life.”