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The Story of the Delivery
March 19, 2011 // 56 Comments -
Guardian Article
November 14, 2009 // 36 Comments -
What's God's plan for May?
November 25, 2011 // 35 Comments -
Milestone for May! Her first steps! (VIDEO)
July 18, 2012 // 27 Comments -
The Amazing Half-Brained Baby blog has been taken over. ...
January 30, 2011 // 24 Comments -
May made me cry today. My amazing half-brained baby.
September 19, 2011 // 24 Comments
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Why I'm grateful for socialized medicine
June 13, 2013 // 4 Comments -
Scenes from the hospital
June 7, 2013 // 4 Comments -
How is May post-op?
June 5, 2013 // 13 Comments -
Tomorrow is the day I've been dreading
June 2, 2013 // 12 Comments -
The one good thing that happened between all the puking ...
May 30, 2013 // 1 Comment
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You have been in my thoughts over the last two wee ...
June 16, 2013 -
I can't believe how much older May looks in that p ...
June 16, 2013 -
It is nice with all the NHS bashing going on out t ...
June 15, 2013 -
Stacie, Very happy to know that the surgery was s ...
June 14, 2013 -
Thanks for this - I'd love to contradict you and s ...
June 9, 2013
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Thanks for entering!
This week I’m… using an iPad?
May wants an iPad. It’s not because she thinks I deserve to watch more movies. (Though that’s a bonus.) She wants an iPad because it may be the first piece of equipment that really helps her learn to see.
May has Cortical Visual Impairment (AKA Cerebral Visual Impairment). CVI is the brain damage that stops her from understanding what she sees. This photo is a good example of how May does not focus, not because she can’t, but because she’s never understood there is anything to focus on.
Over the past few years, we’ve spent money on a lot of visually stimulating toys and lights. They’ve blinked and glowed and flashed. They’ve turned on by banging them and flicking a switch. They’ve been black and white, or multi-colored. We could devote an entire room to these instruments and, let me tell you – we’ve spent a lot more than an iPad is worth.
May’s visual therapist, who has been working with May since she started at her special needs school, is amazing. She is patient and keen to help May – which may seem like a basic characteristic in a therapist, but is not.
She phoned me last week to tell me how she’d used an iPad with May their last session. “Now it was only the first time I tried,” she said, trying not to build up my hopes, “but she held her focus on the screen for 14 seconds.” That’s major, people. “And, she followed – not with her eyes, but with her head – the image across the screen.” Whoa. What? Followed something as it moved?
She directed me to some research by Muriel Saunders, assistant research professor at the University of Kansas’s Life Span Institute, who as TechNews Daily explain it “was conducting a study about how children respond to adaptive switches – a tool that teaches kids with disabilities cause and effect skills needed for early language development – when her assistant asked to use an iPad to gauge interaction.
“We gave 15 toddlers between the ages of three and four with cortical visual impairment an iPad to play with and were completely shocked with the results. Children with the disorder don’t usually look directly at people and objects, but they were completely drawn to the light of the iPad and could interact with objects on the screen.”
May’s visual therapist used the iPad with other students on the same day, with similar results to May. I’m not implying an iPad is the miracle we need so that May can see, but if it helps – it will be a miracle. Make of that what you will. We are applying for charity funding to cover the costs. Watch this space!
Do you know a child who has benefited from an iPad?
Hi Mama, my son has CP and like May CVI, we've used an iPad with him for about 9 months now and it is absolutely invaluable! It works in so many ways and I have the best list of free apps to use for VI and cause/effect apps that Toby loves! Of everything we have for him this is by far the best - sneaky therapy on the go and just for fun! Get one get one get one!!! (Surfing the web on an iPad is also much easier, when he's gone to bed of course!) X
Wonderful! I'm so pleased to hear it - for us and for your son. The more I read about it, the more excited I get!
We have one for my son who also has severe brain injury and CVI. I think it helps him some but has not been as great as I was hoping. I probably need to work with him on it more often. He does seem to like the baby piano and another app called Little Bear Sees which is just for CVI kids is really cool. Thanks for this post and the reminder, I need to use it with him more. Just so many things to work on. :)
I completely get what you are saying! There is so much pressure to do MORE and MORE and MORE. I'm hoping this isn't a case of that.
Wow Stacie this is so exciting. Let us know how we can help raise money for Miss May. I love the photo you choice to use on this post as well. I miss my Neice so much!
Hi Stacie
Good news about the I-pad. I read last week's blog about how you were really struggling and hope the feeling has passed and you are again able to live in the moment. I'm just dropping you a line to say thanks for the piece you wrote ages ago, quoted in the NY Times about not being a hero. It included sentiments about placing equal value on everyone's lives, including your own. I started following you when my younger son was born extremely prematurely, was oxygen deprived and had a brain haemorrhage. You wrote in the Guardian just at that time about May's birth and I was so touched by it. A few years later the younger one is doing well but elder son has been diagnosed with leukaemia aged 6. After weeks of self-blame, self-torture and all that other nonsense I have just very happily returned to work part-time, and was amazed by the reaction to this that I got from another mother, who thought it was the last thing I should do. I went straight to your article and felt instantly better. Keep going, keep writing, you will never know how many people benefit HUGELY from reading about May's and your experiences.
Best of everything to you all
Celia
My son has autism and has benefited greatly from the iPad. There are so many apps that have taught him many concepts that he otherwise would not be able to learn or focus on adults long enough to understand the concept that is being presented to him. Welcome to the world of technology for your little one! I hope her ride with it opens doors for her and is as amazing as my son's has been. Please research the "cloud" and register the device once you obtain it as my son's iPad was stolen at one point and the programming in it, including programs that produce speech for him, were irreplaceable for us at the time. I live in the US, but given that May cannot produce speech, you should check if you can get it completely covered through insurance as an adaptive aid or your national care plan.
Thanks for this advice Krystal! I will definitely look into everything you have suggested here. Fingers crossed it works as well for May as it does for your son!
My 22 year old severely disabled son Christopher has a developmental age of a toddler. He has had an iPad for a couple of years. He intuitively finds new apps and videos on YouTube - currently watching Fireman Sam in another language (I think Russian??) and loves it!! Even an app as simple as Autism Xpress (and I have no connection with this - only that Christopher loves it) which has cause/effect results is amazing for Christopher. And the other apps Christopher really enjoys are the "Talking Tom" and others. I highly recommend the iPad. I will be forever thankful to Steve Jobs for the joy he has brought to my son.
Amazing! Thanks for telling me this. I am so excited for May to get her own. I'll get these Christopher approved apps!