When asking a pregnant women if they are hoping for a boy or a girl the answer 9 times out of 10 will be “I don’t really care, as long as my baby is born healthy”.
But what if your baby is born with a disability, or what if a disability is caused by medical attention received during or after birth?
Pasha Alden – an amazing ambassador for blind people in South Africa, who was deemed blind after prolonged periods in the incubator and too much oxygen, gives us her story on living with blindness as well as support in dealing with a blind child.
Please could you give us a summary on your disability? Where you born blind or did it set in over the years? Who assisted you with it? Are you married or do you have any kids of your own?
Widowed in 2015 I have lived with blindness since early childhood due to retinopathy of prematurity: blindness caused by prolonged periods in the incubator and too much oxygen, a rather
common cause of blindness despite great strides in the medical field. In professional hands, I received good medical care, playing and stimulation and early intervention through the hospital and the then South African Blind Workers Organisation in the Eastern Cape (now Nkosinathi Foundation for Blind and Partially Sighted People).
As early intervention and parent support are key factors to assist a child who is blind, my parents were advised by staff of the then South African Blind Workers’ Organisation to enroll me at a special school, then The School for the Blind in Worcester, later Pioneer School) where I matriculated in 1989 and subsequently completed a B.A. degree and later a mini M.B.A.
Is childhood blindness common and what is it most often caused by?
Many factors may lead to onset of blindness in early childhood or later in life. Some may be hereditary, and others due to accidents sustained during trauma or violence. Hereditary blindness may be caused by, among other conditions, Stargardt Disease, Retinitis Pigmentosa, Macular Degeneration and the like. Others may be due to certain illnesses such as rubella, commonly known as German measles, diabetes glaucoma and the like.
How early can you determine that your baby is blind?
Detection of blindness may depend on the cause. Some eye conditions make the eyes seem rather normal and some children are only detected as blind when holding a book close to the eyes at school. Where possible parents can attempt to observe the movement of the head and eyes. A seeing child will quickly move its eyes and when strong enough turn its head to see objects. Of course if baby never looks at its mother their may be cause for concern.
Is there a way for a mother to determine if her unborn child will be blind?
Consult your doctor if you are aware of any hereditary factors and if possible, consider genetic testing.
What support is available for mothers who have blind baby’s?
A number of organisations provide support to parents during early intervention in young blind children. These are The Nkosinathi Foundation for the Blind and Partially Sighted People in Port Elizabeth as well as The Children’s Centre in Johannesburg.
How easy/difficult is it as a blind mother to raise a child?
Not a mother myself but with countless blind friends who are mothers I hear that it takes organisation, planning and resourcefulness to raise a child whether blind or seeing.
What advice can you give mothers who have children that go blind or are born blind?
I cannot emphasise the importance of accurate diagnosis, early intervention and parent support enough. However, a parent with a loving, accepting and positive attitude is key in raising a child who is blind. Remember, your child is like any other so do not over protect him/her from the big world out there.
In relation to the rest of the world, does South Africa have a good network and support system for blind people?
Support systems are in place. However, we have much to learn from countries such as the US, Canada, Sweden and the UK.
Reading to your baby is a very special and bonding experience, but if your baby/toddler is blind, how do you stimulate them and get them to engage?
It is important for parents to engage the baby to lift its head as soon as it is strong enough to do so, through touch and sound. There are also many ways to make the environment accessible and stimulating for your child: Books with tactile pictures, labeling objects such as favourite toys, books in braille, even if the child is too young to read. Through sounds, favourite CD’s, pleasant sounds such as chimes or bells, the use of different shapes, textures and the like.
Pasha Alden is living proof of how access to Braille and visually impaired reading materials can empower women. She is also a violinist and blind photographer. Alden is a passionate and inspiring Braille ambassador who now travels the globe, taking part in International Braille conventions advocating for Braille good practices and facilitating the delivery of services to Braille readers.