The Window to the Soul
Welcome to 2016 and best wishes from Savannah and I. For those who don’t know us, Savannah is my 19 year old daughter who is autistic and cerebral palsied. She has other conditions associated with her diagnoses, and I share her story (with her permission and input) about how the use of AAC enables her to become more independent in as many areas of her life as possible.
This past holiday was one of the best we have had yet. There is so much to share about it and all the lessons I have learnt, but I will disperse that information over future blogs. For now, I want to share some useful information about Savannah’s visual ability.
In the photos below Savannah is matching pictures of wild animals. She matched all the animals but struggled to match the three big cats that looked similar to each other.
I helped her by providing one aid, and she was able to match the picture correctly the first time:
The aid?? I simply put on her glasses. And that made all the difference.
Our family learnt about the importance of vision when we took Savannah for her first neuro-optometry assessment about eight years ago to Eyetek Optometrist. All these years later, by following eye therapy programmes, using special prescribed glasses and ensuring that she has her routine check-ups; Savannah who had no peripheral vision has now developed some peripheral vision. This is so important as she wheels herself around the house. When she was a walking person, who did not use glasses, she frequently turned into doors or tables or people because she could not see them if they were to her left or right.
It is important to understand that even though a person may see you or see objects; they also have to be able to see details, distinguish details, use both their central vision and peripheral vision, have depth perception (think about walking down stairs if you can’t judge how steep the next step is) and so much more.
The eye is an amazing organ that relays more information than we realise to the brain.
If I did not understand Savannah’s visual complexities, I would not know how to create her communication interfaces which would mean that she may not use certain words or functions in her software, simply because she was unable to distinguish it on the page. I may have thought she does not know the meaning of those words or it is beyond her cognitive ability.
But I understand the problems that Savannah has with her vision and eye function, therefore I know that when she is struggling to give information that involves using vision, it may be that she needs her glasses or that it is task that her eyes are unable to perform because she does in fact have brain damage that affects how her eyes function.
It was not easy to accept that many years ago, but I am sharing this to help families and therapists re-think what a holistic approach is to helping people with special needs. The eyes are indeed the window to the soul, therefore information about the abilities and functions of an individuals eyes are pivotal in knowing what people with complex special needs are experiencing. How is the eye seeing, and how is that information being translated to the brain? I believe neuro-optometry tests should form part of the information that make up a therapy plan for an individual.
Savannah is unable to judge distances without her glasses. This means that if she reaches for something and she knocks it over, it is likely that she can’t see precisley where it is. Without her glasses, she wheels herself around the house (familiar territory) and pick out her clothes. When she is wearing her glasses she wheels herself in unfamliar territory or if she realises that the t-shirt she chose earlier is not the same white t-shirt she had in mind (chosen while not using her glasses), she independently finds the exact one she wanted and changes into it.
As we understand how her vision and brain work together, as well as that she must use her glasses; as a family we are less likely to become frustrated with each other. (Savannah gets frustrated too). We know who Savannah is, why she does what she does and how to represent the information that she needs. Many families find it difficult to take their loved ones with special needs for vision tests, as they fear hearing “more bad news” and fear how intrusive the tests may be. While it was hard to hear what difficulties Savannah had, it also helped us to get to know her a little better and think about that the world looks like for her.
Over time, I adjusted my expectations of her, set realistic goals for her and ensured that she was fairly represented at all times. The optometrists were not intrusive at all and Savannah is more tolerant with each visit to them. Information about what Savannah’s body is not capable off does not extinguish my hope for Savannah, nor does it mean that she is less than capable. It simply tells me that my daughter needs some help and understanding to be the best she can be.
If you do one thing this year for the person with special needs in your life, please let it be an eye test. You have no idea what it will mean to them.
For more information about Neuro-Optometry www.eyetek.co.za