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.
NDIS Registered Provider no. 4050011793
Kerri Weaver is a service provider for children with disabilities.