RARE DISEASE AWARENESS DAY FEB 2826/2/2017 As a result of Feb 28th being the RARE DISEASE AWARENESS DAY, I was pondering over the years I have worked with children and adults with a vision impairment. I have certainly come across a lot of differences when it comes to their particular eye condition, related syndrome, medical condition and such varied visual functioning within the same eye condition. The internet is now enabling families to do some of their own ‘research’ following a new diagnosis to gather initial information and shared stories. The child with a rare condition or syndrome may now be able to make a connection with someone else of the same diagnosis across the other side of the world. There could be a facebook group specifically about it or a forum that’s part of the …Syndrome’s website page. Working in a number of Special Schools in Victoria, Tasmania and Queensland, many children I supported had multiple impairments. Not only was the vision affected but there were varying degrees of physical impairment, perhaps diagnosed with Cerebral Palsy and a “Cerebral vision impairment”, along with speech deficits and cognitive delays. Sadly, some of those children’s vision loss was discovered late in all the routine medical checks as it wasn’t appearing to be the major disability or affecting their development at the time. It was only later on when speech therapists were attempting to consolidate a useful speaking device with pictures, that the clarity on the pics and the ability to choose from one to another, wasn’t so easy. Their vision impairment was having a large impact on their functional ability to scan, identify and read symbols and words. Any child who has additional impairments to their vision can have sensory challenges as the sensory channels can all be disorganised and atypical. Did you know that 80-90% of learning is through vision? Naturally, this could explain the reasons why the developmental progress can be slow and why the child is not up and walking as quickly as their sibling did? Perhaps, the second child could not see so clearly the exciting obstacles to walk towards or the ability to judge depth when changing surfaces so venturing out was not so motivating for the child. In Australia, the Better Start funding that is available for a child under the age of 7, recognises the effect of sensory impairments and the benefits for early intervention to support the child. Criteria in meeting the funding source requires the child to firstly, have a vision and/or hearing impairment plus they could also be diagnosed with:
There is only one name of a syndrome from this list that I have not come across in my 25 years of work with children. I have also been able to link families to others with the same syndromes and relative issues. It’s so important to be informed about the implications of a ‘rare disease’ as initially, there may be minimal indicators. It is all part of the service from ‘Eyes and Independence’.
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Travelling and proud22/2/2017 It’s now starting to feel more like a journey of sharing my thoughts along with what I have observed. Currently, I am holidaying with my mother who just happens to have Macular Degeneration (which is kind of like the reverse of RP) so her central vision is affected initially. Credit to her, she strives to continue to be independent and not want to share too much about what she is not seeing. On holidays in New Zealand, she is adjusting to a different place each night to stay, re-packing and packing for the next day’s needs, changing bathrooms, different layouts of a room and searches for where the tea & coffee and the hot water jug might be on this occasion. Sitting amongst different people on tour, she may have a conversation with a couple from the UK one day and some Canadians the next, but finds it difficult to identify the same people the next day as she never got to recognize their face (due to central vision loss). When we sat up the back of the bus today as it was our turn (new seating each day), she could read the digital clock up at the driver’s mirror which was basically the bus length (approximately 6 metres away) but identifying a NZ dollar coin in her hand was more taxing. As a daughter, mother myself, teacher for vision impairment, Orientation & Mobility Specialist, it can be a challenge to decide what role I take when on holidays with ‘Proud Mum’. I guess one goal I was hoping to achieve was providing opportunities for her to see the benefits of wearing a badge that identifies her – “I have low vision”. I have encouraged her to wear it daily so that she can be identified at a table when someone offers her a plate, to assist her when getting on board a boat from a moving jetty, when searching for the female toilets in hope for a familiar sign. These are just a few suggestions where I know that a ‘sighted person’ may then have more understanding of why she appears to be ignoring them when spoken to, she may just need that extra assistance at a shop counter in knowing what range of drinks are on offer, or simply the reason why filling in a standard hard copy evaluation form from a motel room hasn’t been completed. She hasn’t been wearing the badge much. There has been some discussion with her and guests on tour about her vision loss, with some interesting additional questions and surprisingly, those conversations have taught others a few things to consider....and it has also jogged their memory of their dear old Auntie …. with MD who doesn’t go out much anymore. I wonder if she needs a badge too? Although this blog doesn’t refer directly to children and their vision impairment, the experiences that an adult with a vision impairment encounters can be so similar to younger ones. For families of children with a VI, just think about that when you plan a holiday, organize a day trip or a sleepover at Grandma’s. Going back to the same camp site or holiday resort is not such a bad idea when familiarization can build such confidence in a person, particularly one with a vision impairment. It has always worried me when as a Visiting Teacher I am alerted to a student who has a recent diagnosis but is not wanting to ask for any help, doesn’t want to be taken out of class, is misbehaving and the teachers are concerned. Often the situation may have been developing for some time but it’s got to a point where it’s getting more difficult to ‘hide’. There may have been a few missed balls at PE, the student wrote down the wrong homework from the board, and on a special night at school with parents and students, he/she never recognised any friends and heard the next day that she had been described as ‘quite rude’ for not saying hello. Sometimes, that’s when the explanation may need to be given.
I guess the big fear is that the student in disclosing the information may be tested with friends. Some may process it and show great interest in understanding more but others may not accept it so easily and decide to not ask of them to participate socially anymore. We (school staff, visiting specialists, parents, peers) need to be aware of these students and support the loss they are dealing with, and like any other grief – it will all take time to work through and accept. If direct support is refused by the student, the support teacher can work in the background, advising parents, teachers, teacher aides of the implications of such a vision loss and encourage assessment to be modified or reduced for a period of time while establishing the best way to provide for the student. Accessing an independent psychologist or counsellor for the student and/or family can also assist in the grieving process. Back to school with RP5/2/2017 Now, for those wondering, I don’t have a vision impairment so I don’t claim to know what it’s like from a totally personal experience but I have worked for many years in the field of vision impairment with children from birth to end of school age, and more adults more recently. And there’s always someone with Retinitis Pigmentosa. They may be newly diagnosed or have had it for many years and as they have hit their 40 – 50s, things have started to change. A student at school with RP is often not wanting anyone to know, reluctant to accept support in class and utilises the vision they have very functionally and successfully. If they have a ‘textbook’ type of RP with only peripheral loss and clear ‘tunnel vision’, reading, writing, observing, is still very possible. Lighting is a consideration to ensure there is enough coming in from around to point directly onto a page or within the environment in which someone is working. A new school year for the student with RP could have initial issues with the layout of the classroom, knowing the pattern and where the chairs are placed in relation to the tables or desks. If the student sits further back in class and perhaps central to where all the action is taking place, they will be able to gather more visual information as they have a larger ‘tunnel opening’ to do so. The teacher does need to be made aware of the student with RP and understand a little about requirements in the classroom. Referring to something ‘over there’ is not providing clear and direct information to the student if they didn’t see the teacher pointing at the time to the place of discussion. Landmarks are always good for reference points eg. “When you hand in your work at my desk, place it in the tray marked ‘completed work’”. We all know a teacher’s desk has its own arrangement and different corners could be specific to different subjects, dates, planning, and ‘to do’ piles.  Here are two pictures being viewed - one with full field of vision and the other with tunnel vision. Clearly, we can see that the one with restricted vision does not notice all the information to complete a solid picture that includes a STOP sign or knowledge of a bike in lower field of vision. The pole may not at first be recognised as a pole.
AuthorKerri Weaver is a passionate and caring service provider. She loves sharing her knowledge and skills to supporting those with vision impairment and additional disabilities. Kerri has worked in the field of disability for over 30 years. Her experience includes working in Tonga with a specialist team on multiple occasions. CategoriesArchives
February 2021
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