Australian Story - Tanya and Oliver

 

Knowledge with Tanya

Tanya is a regular attendee of MyTime Penrith who has a wealth of knowledge and experience in practice when navigating the disability world. When you first meet her you'll notice her strong will and conviction. Tanya is unapologetic in her advocacy. She is a mother, carer, and advocate to her son Oliver! Oliver is a curious young man who loves exploring (especially sensory seeking). Currently, he is wanting to more and more dictate activities and exercise his choice. He is non verbal but communicates through gestures, eye gazes, vocalisations and is a gestalt language processor which has opened a window for Tanya to understand divergent ways of communicating and connecting. It has also enabled her to critically analyse why such legitimate forms of communication are not embraced and emboldened in our society. She concludes that a better understanding of divergent ways of communication will provide better access and inclusion of the many abilities that exist in our world.

In a world that is perfect, Tanya reflects that society and systems need to cater to nuances and complex needs. A one size fits all approach and universality restricts and at times adds more pressure than providing support. Oliver doesn't fit into a category of diagnosis, like Down syndrome, for his disability needs. He has many diagnoses, many of which were unknown at birth, which has been tricky but also has its advantages. 

Oliver has CACNA1A, ataxia, epilepsy, an intellectual disability and autism. The discovery of such diagnoses has been based on instances of medical episodes and as well as close monitoring of changes in behaviour and development. Tanya attributes her instincts as a parent as the key driver in getting the right supports for Oliver. She mentions how societal expectations, also within the disability community, limit and don't respond exactly to your child's needs. "Going with what everyone else is doing and thinking" is good in general but also is a limiting philosophical approach to have as a parent and carer of a child with disability. It can add more pressure on an already overloaded carers load and can hinder gut instinct and carer voice. She attributes remaining positive, flipping the narrative to be about the achievements as opposed to a deficit model, becoming knowledgeable and critical in your child's journey of disability, developing your own positive check lists, and setting boundaries in life (which involves removing people and things that don't add value) has helped her to where she is. 

Not having a common diagnosis has meant a tricky ride at times on the disability journey but the big positive, Tanya mentions, is that she is not bound by expectation of what others have done along their journey with a more common diagnosis. She is her own advocate for Oliver which has meant she has been able to strongly advocate for him in every situation regarding what is best for him and not being affected by what majority have done. Being able to go against the grain based on your own knowledge of your child is empowering and validates the intellectual knowledge of carers and positions them as agents of value and activity in a system that treats carers lacking in active agency. To say no to particular therapy approaches and activities based on her own knowledge of Oliver's profile has meant more appropriate supports put in place that validate Oliver's identity, Tanya's intellectual knowledge and at the same time educated therapists to improve their practice - a case of carers educating therapists which needs more embracement. Tanya mentions that therapists that come out of university need more hands on experience, "how else will they be better without learning from carers?". Tanya hopes that through her educating the therapists who have Oliver on his needs, the next parent with a child with complex needs will be better supported. 

What has assisted Tanya as a carer?

Tanya has had to work within the systems of supports she is in where through creative and critical thinking, and divergent ways of operating, she has been able to create a workable structure that moulds to her situation. 

One of her divergent approaches is she has developed a "cheat sheet", which a is a document and folder of relevant documents that outlines Oliver's medical history, needs and accommodations which she utilises and distributes to relevant stakeholders which has saved her time when dealing with emergencies and people who don't know Oliver. She says it has been difficult navigating the system where "every new person you speak to asks you the same thing and you have to repeat again and again". Providing the "cheat sheet" saves time and enables Tanya to focus on the immediate needs of Oliver, adding efficiency as it eliminates approaches that she knows historically will not support Oliver. Along with this document and folder, Tanya also has a "ready to go" hospital bag with all the essentials to grab and go. Being prepared as such gives Oliver the best support. 

MyTime Penrith members will be working as a team to expand and develop this "cheat sheet" idea  for other and future carers to use, to provide more efficiency and accurate information for sharing, to improve the lives of carers. It is proposed such a document can be used to give to medical staff, therapists, organisations, schools and other stakeholders who will require information about a child with disability. This approach will eliminate repetition of the same processes from the carers end. It is a document controlled and managed by the carer. This is the first resource MyTime Penrith is creating as a collective which is very exciting! Watch this space!

What are some useful tips to get support workers?

Tanya began hiring teenagers to hangout with Oliver as a way to build Oliver's social skills. She says that process also gave teenagers meaningful jobs, built their capacity in working with vulnerable community members as well as learning responsibility. By doing this, Tanya found it an easy approach to get supports and she was able to supervise them as they interacted with Oliver and at the same time she is able to complete tasks at home. Eventually, the teenagers became babysitters and carers as they matured. 

Regarding hiring more support workers, she has reached out through social media presenting a deidentified job advertisement for a carer. She mentions, she didn't want to go through an agency as the parameters and rules limited her ability to find a carer that is best suited for Oliver and to be client centric as opposed to being neoliberalist driven. She says that can be hard to find in a disability support system where neoliberal agendas can take over. Through receiving the applications she was able to gradually vet through a series of conversations revealing the needs of Oliver and removing those unable to meet his needs, as well as trial meet and greets at no fee. Tanya says its important to find the right people that are in it for the right reasons as you are leaving your child (with additional needs) with someone else which is stressful for a parent. She acknowledges it is a process but well worth the investment to get the right people. When Tanya attends MyTime Penrith with Oliver, she is always accompanied by Sidney, a support worker for Oliver. Sidney is attentive to Oliver's needs and supports him to engage in play and exploration. What is very noticeable is she is in tune with Oliver and helps to deescalate his stressors which enables Tanya to participate in the activities of MyTime Penrith. Sidney is a testament of a support worker system that can authentically work but definitely hard to find. We all need a support worker like Sidney in our lives!

MyTime Penrith warmly thanks Tanya and Oliver for sharing their lives, story and knowledge. We have learnt so much and appreciate the continued learning with Tanya and Mr Oliver! To learn more about these amazing individuals, contact MyTime Penrith or even better, join one of our future sessions!