Below is a picture graphic of hot air balloons in the blue sky with green grass below with words - "What counts in life is not the mere fact that we have lived. It is what difference we have made to the lives of others that will determine the significance of the life we lead". (Google image)
It’s been a busy week including regional travel to areas outside of Brisbane. When I made the big decision about setting up my own business, I didn’t really know where it would take me but I was determined to continue to pursue my passion in the field of disability and ensure those children could continue to access quality support. Along the way, I have also been supporting adults of all ages dealing with vision loss, newly acquired change in vision, and assisting in their acceptance of the loss or change they were now experiencing.
It’s been wonderful meeting up with past students years down the track. It’s a good feeling having been a part of their journey. Providing Orientation and Mobility lessons may have been the first opportunities where the person involved started on their way towards independence. Years down the track, I have observed them catching buses, crossing roads, working in a job and making plans for the future. I love to see progress. And I guess that’s why I enjoy my work so much – I do see results, I see progress and optimism, drive and enthusiasm. I see success.
Currently in my role, I am:
Last week on Australian TV, there was a program on SBS called ‘Insight’ and the topic for the evening discussed ‘Siblings of a child with a disability’. Coincidentally, I knew the first family from my past work where I supported their ‘son’ in my Orientation & Mobility role and assisted him in the transition to a new school. I recall reading in his notes – how close the family bonds were and their support for one another. I also recall stories of the family requiring very high fences around their home to keep their ‘son’ within their home environment as when he had the opportunity to be mobile, he would be and could take off down the street.
Families who have a ‘child with a disability’ suffer from sleep deprivation and usually, it’s the parents we hear from as they were up all night with the ‘child’ due to seizure activity, stomach upsets, body clock out of sync, difficulty determining night and day (this can be experienced by children with minimal or no vision). The siblings on the TV program shared their personal challenges with sleep and the interruption due to their sibling requiring additional attention. They had experience being an additional carer in the family and assumedly may have to assist in the morning routine as well and then head off to school for another busy day themselves.
On home visits, I have always been very aware of the siblings in the family and the need to acknowledge them too, as they are part of the family. Although I am there for a particular child on the request of the family, the other child/ren cannot be ignored. My home visits have always included a basket of bright fun things, noisy toys, that I bring in with me to demonstrate, play alongside, challenge the child with, so of course the sibling sees them too as rather inviting. (I will often bring in extras for the sibling, just in case). We all know someone else’s toys are always more interesting.
My role is also to observe how the child does interact with others, aside from the parent, does their mood change when additional people are around, act differently in front of particular family members? A sibling can be a wonderful model for playing when stacking cups, counting discs, matching colors, posting blocks – playing is natural for the sibling and can encourage others.
I have seen a sibling sent to his room because it’s ……….’s time with the specialist or have a DVD put on for the sibling to prevent a situation escalating. Other home visit appointments have been made around the sibling’s kindy program just to have one less child in the home when Mum needs to focus on just one at a time.
Over the years and many home visits later, I remember the siblings that would get quite upset because they were treated differently by the parent or child with a disability when I was there. I guess we can assume that many children could become quite resilient to the ‘goings on’ around them but when you hear directly their recall of the experiences ‘down the track’ and discover the pressures were perhaps, quite different to how they presented back then, it can teach us and future parents of the possible impact. More importantly, the importance of ensuring that when the sibling craves attention and support and is feeling the heavy pressures, that there are supports in place for them as well.
On a final note, I met up with a teen and her family at least 15 years after I first did home visits and then provided support at school, and saw the brother as well – he had been one who never enjoyed ‘the specialist’ visiting. Interestingly, he had no recollection of who I was, and nor did the older sibling! I’ve always questioned whether it was due to there having been so many specialists in their sibling’s life, or whether their experiences have been wiped as their way of dealing with it all. I wonder how they are all doing now as adults and their relationship with that sibling who at the time demanded a lot more specialist support than what they did.
What are your thoughts? Are you a parent or a sibling who could share some comments, relay a short story? I could write a lot more about these scenarios and certainly they are both positive and negative learning experiences for the families and communities.
The link below is to the TV episode that triggered this blog idea and following it are some links to additional websites for siblings.
I would love to see more support networks for siblings, in families where there are more than just the ‘daily challenges’, different expectations and stressors.
Have you as a Driver, ever waved someone on at a pedestrian crossing and then got annoyed because they didn’t go ahead?
Have you ever slowed down at a pedestrian crossing but not quite stopped as the pedestrian/s were quite close to the other side to step off anyway?
As an Orientation & Mobility specialist, it continues to amaze me when teaching a person with a vision impairment to cross a road, the amount of people that wave the person on through the windscreen of their car. It’s quite common too, that it still happens when the person is actually travelling with a mobility cane. That person is not likely to notice the ‘wave on’ and in fact, we teach the opposite for them to ‘wave the driver on’ so they are making a decision based on what they have listened to, are aware of and maybe what they can see a little of, to then gauge when they are safe to cross.
Do you know the rules at a Pedestrian crossing?
For the pedestrian, “when crossing the road or using a pedestrian refuge, traffic island or median, wait for a safe break in traffic before crossing each section of the road”.
We would then teach the pedestrian to:
As a driver, please take a little more care at those crossings and if the person is travelling with a cane, take into consideration what that implies. And just another note, a cane traveller may not be totally blind but their vision may be impaired to a degree where the cane can provide protection, alert the public and provide information of what’s ahead and/or below.
Please share this story with other drivers who may benefit from learning a little more about their responsibilities on the road and considerations to make for pedestrians, in particular those with a vision impairment.
In crowded areas such as train stations, public transport, big organisations, public venues, there is a diverse group of people who attend all these places and naturally, it would include people with mental health issues, physical disability, autism, hearing and/or vision impairment. Have you ever considered that the person beside you may have difficulty recognising body language, interpreting the ‘unspoken word’, issues with personal space, or simply not noticing someone in front of them or beside due to their low vision. They could be sensitive to loud sounds, or glarey windows and so what they notice may be limited.
I was with a couple of teenagers with a vision impairment the other day on the train. We got on a crowded train, so moved towards the yellow solid bars hanging down from the ceiling of the train. If we didn’t have this to secure ourselves, we could become unstable. Three of our students were using their ‘cane’ to assist with their mobility. Most seats were taken and a few of the students said they would just remain standing. Now, I’m not saying that every person with a VI requires a seat BUT there will be occasions where sitting is a much safer option and depending on their medical status in addition to having a vision impairment, preference may be to sit down. Many people were sitting in the ‘Emergency Seating’, unsure as to whether they were ‘entitled’. There was no offer from anyone sitting to give up their seat to another person. Half way through the trip, I managed to find some seats that were vacated by people getting off the train. Nearing the end of the journey a person who had been sitting beside one of our teens stood up, positioned her body towards the direction to get out but stood there, said nothing and waited. It wasn’t till I signalled to our teen as I was sitting opposite him, and alert him to the person wanting to get through. The person’s friend also then proceeded to walk through, once again without a word.
I don’t think it’s just us ‘getting old’ when we notice respect and manners are lacking in the generation of today. How many times have you been in a crowded place, possibly aware of someone closeby but not sure what they are doing? The person then pushes through, we say ‘sorry’ ! Should we be sorry? What are we apologising for? All the person needed to do was say ‘excuse me’. I don’t think it’s that hard. Why are people afraid to ask the question, assert themselves, advocate for themselves? Or are they just being obnoxious and expecting the stranger next to them to know what they want?
This topic could become a program for teens run over a number of weeks. No doubt, a lot of followers on my pages are probably not the ones who need to take such note but it can give you an opportunity to reinforce your expectations of your child, student or relative. And ask the schools about how they are teaching the basics of respect for all.
Below is a drawing (of a girl & her dog knocking before entering a door through to where someone is sitting at a desk, reading or writing at a desk) and written piece by a student
– it’s simple and basic but takes practice and good modelling.
Equity for everyone
Say sorry, please and thank you
People deserve respect
Ensure that everyone's rights are respected
Carry respect into all of your life
Take time to respect yourself
On the net, we read and watch so many stories about the ‘success of a blind child’ in an English school, the achievement of a young teenager with low vision finding a job in the United States. Where are all the Australian stories? Even when we are looking for information about vision impairment, syndromes, good braille resources – we all tend to initially look at websites based in the US or other countries outside of Australia. Their resources with some purchased and freighted to Australia but it can be very expensive. There are some great websites with resources in Australia too. In fact, on this website I have put up recommended links to other Australian sites including our own professional association (South Pacific Educators in Vision Impairment), information about NDIS, Raising Children’s Network which holds lots more information about vision impairment and additional disability considerations.
Very recently, we have learnt about a parent in Australia who had finally achieved success for her twin girls to learn braille in school despite past differing opinions. Parents like Raquelle continue to ‘fight the fight’ so her girls can have equitable access to learning through alternate formats being made available.
Sadly, some of the Australian States have moved towards a more “generic” approach, expecting teachers in-house to know how to manage ‘all kids’, no matter what their disability. Some regions of Queensland have reduced the number of specialist Advisory Visiting Teachers visiting students and employing those less experienced, and on a ‘temporary basis’. This doesn’t give continuity to a child’s support for learning. Where are those children going to be in a couple of years down the track? Still trying to get some consistency in their learning, from a teacher who is less knowledgeable of specialised needs such as braille or specific technology to achieve academically and prepare them for the future. Who will assess the child’s reading needs in braille? Will they know what is required?
As NDIS rolls out, it will be up to family members and those with a disability to do the research to source the providers to meet the person’s goals. Like the twin girls, achieving reading in an alternate format or travelling down the road independently can be achieved with the right people to support you.
Kerri Weaver is a service provider for children with disabilities. She is passionate about sharing her knowledge and skills in supporting those with vision impairment, multiple impairments and those with associated syndromes. Her years of experience are shared through her blogs with a different theme generally, for each month.