This morning, I woke up again in a bedroom in a house where I feel safe and loved. When I let you know I’m awake, I know that you will come in real soon and greet me smiling and talk to me, cuddle me, tickle me, blow raspberries at me, tell me how you’re feeling and ask me how I am. Although at the moment I can’t communicate with many different sounds, I can share some gestures and gurgle a little to let you know that I’m happy or sad or frustrated. I almost forgot to mention that I have to include a sound for hungry or thirsty too – especially in this hot weather.
I wonder if we will have any visitors today so Nan & Pop can show me off. I’ve learnt some new things with my legs lately and they seem to be moving faster when I bend them, than they used to. I have to keep remembering my arms too that help me move along. When I do my physio and go in the water, my legs work even more and tell my brain ‘I can do it’.
Sometimes I don’t see that well and it takes a bit of time and moving around, to remind my eyes that they can see some things. I notice bright colors and things close up sometimes. I don’t always know what it is straight away but when I touch it, it makes more sense. My Nan has lots of fun looking at things on the computer and a few days later, surprises arrive and I’ve suddenly got something else to play with, to make a sound with, to tap or shake – every day is a fun day! I think I’m really lucky living with Nan & Pop because they love me, they feed me, put clothes on me, talk to me, cuddle me, keep me safe. What else do I need?
HAPPY GRANDPARENTS DAY, love your grandchild xxx
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know of a child living with their grandparents?
I just can't emphasise enough the importance of inviting highly skilled, experienced, specialised professionals/providers into your family's world. It does not just involve one therapist or one school staff member. The journey for your child will involve numerous people and you get to choose who and when they can provide. Teams are strongly encouraged so if one or two can't provide it all, the referral process for others can begin.
Children with vision impairment are entitled to equity of access, i.e. the right to access all aspects of life as they choose. To achieve this they must be supported from the time that their vision impairment is diagnosed and as they travel on their educational journey. Children with vision impairment need advocacy to achieve their goals in education and life. It is vital that professionals supporting them can guarantee reasonable adaptations, assistive technology, and accessible resources to facilitate their learning and development. Children with vision impairment are more often than not complex individuals, with multiple health issues and other diagnoses. This makes it vital that professionals supporting these children are knowledgeable and willing to advocate for the rights of children to access to all aspects of their community. Professionals must also play an active role in encouraging families to advocate for their children. To this end, families must understand the meaning of their child’s vision impairment and the impact it has on their child. Families must be empowered to advocate on behalf of their child, and in partnership with professionals and their child, to make informed choices regarding this support. This information has been taken directly from the SPEVI website.
Parents, families and professionals are strongly encouraged to contact The South Pacific Educators in Vision Impairment (SPEVI), the major professional association for educators of students with vision impairments in Australia, New Zealand and the South Pacific region, with any questions regarding support for their child with vision impairment.
SPEVI website: http://www.spevi.net/contact/
Have you heard the story about the guy with the banana in his ear? One day, Bill was walking down the street and 10 metres in front of him was another guy walking along but he had a banana sticking out of his ear. Bill called out to him “hey mate, you’ve got a banana in your ear” but no response from the man. Bill walked closer to about 5 metres and called out to him “hey mate, you’ve got a banana in your ear” but STILL no response. Bill caught up to the man and tapped him on the shoulder. The man turned and looked Bill straight in the face and said, “Sorry what was that?”. Bill was finally getting somewhere and exclaimed “did you know you’ve got a banana in your ear?” by which the man responded with “Sorry mate, I can’t hear you. I’ve got a banana in my ear” - BOOM BOOM!
Picture above is of the two characters from Sesame Street - Bert & Ernie and Bert looking bewildered as Ernie is holding a banana in his ear - a video skit from many years ago - https://youtu.be/-_0_suZntks
Is the obvious understood? On Tuesday night I went to bed with a tickle in my throat. Fast forward forty-eight hours, having achieved a day at work, my voice evaporated leaving quiet whispers and intermittent squarky tones (my son thought I sounded like a squeaky chair). I then literally, could not talk! And I was about to run an emotional support group on the phone for older clients with a vision impairment! Thank goodness for ‘peer support’. I listened and sucked on my Manuka throat lozenges.
My Mum rang yesterday to ‘check on me’ as she knew I hadn’t been feeling well. My husband answered the phone, knowing who it was and with her questioning my health, he proceeded to point out that I was in the room, the phone was on loud speaker and I could hear what she was saying but couldn’t talk. She was rather insistent that ‘if she doesn’t feel like talking, I won’t talk for long’! I was happy enough to listen and have my husband answer on my behalf. I think the whole interpreting thing may have been a foreign concept? Overhearing my ‘squark’ in the background gave Mum the confidence that I was still alive, wasn’t being held captive but there was a sound of disbelief and discomfort that if she wanted me to communicate, there would have to be another way.
Many people with a vision impairment have often shared their frustrations of others not understanding their vision. There have been assumptions for a long time from general society that ‘you either can see or you can’t’. They don’t seem to understand the in-between, the night time issue versus day time or the glare factor presenting obstacles only on a sunny day.
My son was very quick last night to comment saying “oh, you can talk now” but the utterance was a 'one worder'. Assumedly, I’m better! I realise my voice challenge is temporary but it’s hard for people (more often family) to comprehend that change, that adjustment. For all those who have and are experiencing vision loss, or hearing loss, loss of a limb perhaps, it’s important to educate those who don’t understand.
So, when you next notice a banana sticking out from someone’s ear, a person travelling with a white cane or somebody with an assistance dog - observe, take time to learn about their new… ‘status’, and ways in which you can make the adjustments as well...to the change.
NDIS Registered Provider no. 4050011793
Kerri Weaver is a service provider for children with disabilities.