Visual Impairment

5 simple ways to comfort a sensitive child

Posted on Mar 15, 2014 | 1 comment

5 simple ways to comfort a sensitive child

I HATE THIS! …says May in a million ways every day. May has a lot of sensory issues that could limit us if we let them. But, we want to be a part of the world, not locked away in our house every day. When we leave our house, I can’t control the environment – but I have picked up a few tricks that help comfort her. Here is one way to tackle each of the 5 senses: 1. TOUCH – Touch anything wet or cold to your child’s hand before touching it to their face. The face is a very sensitive place and it will be less shocking for them if they feel it first somewhere else. 2. SIGHT – Children with cognitive visual problems often see things better in their periphery. Place the item to their side and then be patient and leave it there until they make sense of it. 3. SOUND – In noisy places, try using headphones to play their favourite songs and block out unfamiliar or sudden noises. 4. SMELL – Wear perfume early on when they are just babies. The sense of smell is often overlooked and perfumes are a strong scent they will associate just with you. 5. TASTE – Nutritionists will hate me for saying this, but a favourite baby food pouch tucked into your bag means that no matter where you are, you have food at a pureed consistency that you know your child likes the flavour of. *BONUS TRICK* PHYSICAL – Want to help your child touch an object, but they clench their hands? Gently hold their wrist and press your fingers on the top of their hand. Their fingers will open like a blossom. Know a trick that could help a child tackle their sensory sensitivity? Please add it to the comments! Disclaimer: As always, please note that I’m not a doctor. These are just tricks I picked up along the way that might help you...

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When there is no answer

Posted on Feb 28, 2014 | 5 comments

When there is no answer

A couple of weeks ago, a professor running a vision clinic drew my attention to my daughter’s eyes. Her beautiful, big eyes. “She has very large corneas,” he said. “Do you know what happened to May? Has she been seen by the geneticists?” She has. In fact, she’s had two MRIs, many brain scans of various types, three lumbar punctures to her spine, blood tests (hundreds?), genetic photographic testing (where they examine her facial features) along with tests for Strep-B, infection and vitamin deficiencies. They’ve revealed nothing. “How was your labour?” the professor asked. “It was protracted,” I said bluntly. “68 hours.” “That’s probably it then. But, I could refer you on if you wish.” “Let’s say I did take May in for further genetic testing and they found something. Would it help her now? Would that information benefit her in any way?” “No. It probably would just give us more information.” “Then, I’d rather we didn’t. We’d be testing her for our own curiosity. It wouldn’t be right to put May through that.” I had another conversation with another doctor, a neurologist, three years ago after an overnight stay in a hospital to trial her with a new seizure medication. We’d been testing her for a year and a half at that point and had found no answers. I asked him: “How long do we go on testing May? How many tests are there?” “We could continue to test her forever,” he said. “New tests come out all the time. As doctors, we are always searching for the solution.” “But, will it help May? If we find out?” “Probably not.” “Then, I’m done. I’m done testing her. I’m done putting her through this.” Sometimes there is no answer. Sometimes life just deals you a bad hand. These doctors meant well, they really did – and it makes no rational sense. In life, we expect answers. But, the truth is they don’t always exist. There is no solution. There is only a little girl with half a brain. People are always asking me why. Why is she crying? Why is she having seizures? Why isn’t she sleeping? The definition of unbearable should be: when you don’t know why your daughter is in pain. More information isn’t the answer when no answer exists. It is an awful truth. But, I’ve come to think of it as the only sane approach. Acceptance isn’t about fixing the problem. It is about accepting the problem. I could shout and scream about it. I still want to demand answers. But, in the end I hope someone will lead me back to my  little girl. That she will be enough. They will take my hand and place it on her head. My little girl with half a brain, a half brained beauty. She is the...

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Bad Mother Story (#246,000,001)

Posted on Aug 31, 2013 | 10 comments

Bad Mother Story (#246,000,001)

I’m a bad mom. Months ago – six or seven months ago – I took May to Great Ormond Street Hospital to get her eyes checked by a specialist team. Two years ago, I begged, pleaded and even punched some people out to get her seen by them. (Okay, I didn’t punch anyone in in the face, but I was tempted.) So, it is even more ridiculous when I admit the following: I received her new prescription but I never got it filled. May has been without glasses all this time. And yes – it is my fault. But, before you pass judgement, consider the lives of a special needs mother and father. We have jobs and other kids and bills and chores. All the normal stuff. But we also have meetings with specialists every week. (Here is a sample of who we see: neurologist, social worker, visual therapist, occupational therapist, community outreach nurse, music therapist…) And of course, there’s that small issue of major hip surgery. Oh yes – and I almost forgot – I have leukemia. I don’t feel guilty. I just don’t. How do we special needs parents do it all without some of it falling to the wayside? We can not. And yet May is still a happy, adorable little monkey. #majorachievement Here’s a little inspiration to myself to finally get her those specs: some photos of her dressed up in my new glasses. That’s right, I managed to get new glasses for myself but not my child. And that, my friends, is Bad Mother Story #246,000,002. How do you think my bad mother story...

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This week I’m… using an iPad?

Posted on Mar 17, 2013 | 10 comments

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...

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What I have in common with Katie Price, glamour model (more than you think)

Posted on Oct 4, 2012 | 2 comments

What I have in common with Katie Price, glamour model (more than you think)

Does this story sound familiar? From an article in The Guardian about Katie Price, glamour model and mother to a disabled son: “I can’t fault the NHS. Even though when Harvey was younger, I thought they were a bit shit,” she says, and thinks about it for a while as the hairdryer roars. “They were shit, actually. We didn’t get any support. I remember the health visitor who first looked in his eyes, who said, ‘Oh, he’s not really following. I think you need to go and see your doctor.’ So I went to see my doctor, he did the same thing and said, ‘No, that’s not right. I’ll make you an appointment for the hospital.’ We went up there and it was like, ‘Yeah, he’s blind.’ “And my mum and I were like: so what do we do now? And they said, ‘Well, there’s not really anything you can do.’ Do you remember that?” she asks her mum. “And we left there feeling really shit. We were like, can you not help us? Is there any help? Where can we go? We should have been offered support.” Was she at May’s diagnosis? I have no interest in Katie Price, the brand. But to Katie Price, advocate to disabled children and her own child, I feel a kinship. When she tried to set up her own school for visually impaired children because Harvey’s school was being closed and the children siphoned off to placements that could not meet their needs – I was with her. Even though I’m sure the idea of Katie Price, educator, was the butt of jokes across the land, and even though I’m a teacher and I hate the idea of free schools – her school is the only one I’ve heard of yet that I thought was worth opening. The government is ripping funding from disabled children across the country, so I know it is happening where she lives. Her son, like my daughter, deserves better. And, it isn’t enough to say, “Well, she is rich, so she can buy Harvey what he needs.” Other children at the school didn’t have that option and she tried to save all of their education, not just her son’s. Besides, very few parents think an ideal education is one where their child is homeschooled without access to the facilities, social life and professionals a special needs school would offer. The government takes away. And then, of course, the government turned down her application. I respect Katie Price for one other reason. She talks bluntly about her son’s disabilities. The journalist asks her about her hopes for Harvey’s future – a question that completely ignores the obvious family support he is surrounded by during the whole of the interview. She whips back with dark humor: “Oh – he’s going to have a shit life. Isn’t he?” she says, laughing and turning to her mother… She adds after a pause: “Ha ha. No, I’m joking.” Like Katie Price, I am drawn to speaking about my daughter, and repelled by transparent prodding. Katie Price is unapologetic. She is in love with her child. But, some people are never satisfied if you don’t play the victim. I defy anyone to read about our lives – hers or mine – and find a misery tale. Photograph from the article: Zed Nelson for the...

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