“We didn’t know Alex was severely impaired until he was 5 months. We think this is because he followed sound so well, and he was our first child. It was when the Neurologist tried to get him to follow things with his eyes that we realised he was just not interested.” Linda, Alex’s Mum.
Alex has Lissencephaly a rare brain malformation, Cortical Vision Impairment and Epilepsy. Despite his challenges, with the help of his Speech Pathologist Caris, he is learning alternative ways to communicate.
The wonderful thing is, Alex has the ability to connect deeply with people, from the inside out. He can cut through the clutter and tune into emotions in a very special way.
We spoke to Alex’s parents Linda and Peter this week, to find out more about their day-to-day challenges and their commitment to Alex’s independence.
Tell us about Alex’s communication needs.
Alex is non-verbal and has an intellectual disability and yet we believe he is quite engaged with people. Being social with other people is probably his favourite past time and yet with no obvious communication skills it limits his interaction. We need a way to communicate with him that does not rely solely on vision and is presented to him in a way he can learn.
How does Alex’s vision impairment impact on his everyday life?
Visual stimuli do not give Alex the same sense of enjoyment others would get and in fact it is clear that having to attend to things visually for intensive sessions is tiring. As a child at school it is amazing how much of the school day and curriculum is dependent on vision. Alex needs verbal reinforcement constantly to help him understand his environment. He also needs sensory input that helps integrate the other senses with what he is visually interpreting. Mostly he needs time to interpret things and this is probably the one most challenging thing. In our busy world we don’t often get given that much time.
How has Speech Pathology helped with this?
Helping us interpret his vision assessments and understand how to modify what we present to him to assist with his communication. For example, sensory pictures and high colour contrast, large simplified pictures.
What is your first memory related to Alex’s vision impairment?
We didn’t realise he was severely impaired until he was 5 months. We suspect because he followed sound so well, and he was our first child. It was when the Neurologist tried to get him to follow things that we realised he was not interested.
What is the one thing you want people to know about living with vision impairment?
That just because they don’t look at you in the eye it does not mean they are not listening to you, or looking at what you are doing. They are not tired or bored. It is probably because it is just too hard to see directly or they are trying to use their peripheral vision to orientate themselves and to hear better.
Who inspires you most in life?
Hmmm no one person really, but Alex is pretty inspirational. He is pretty switched on to people, and perhaps because of his vision impairment he sees us all very differently. I think his relationships are much deeper as he is not caught up in the surface clutter that can dominate our life. I think he sees us from the heart and is very in tune to what we are feeling.
We accept referrals from parents, teachers, medical specialists, allied health professionals and child health nurses. Contact us on 1800 847 466 1800 VISION (1800 847 466) 1800 847 466 1800 847 466 1800 847 466 1800 847 466and speak to our Children and Youth Services team to discuss your needs.