Knowing how to proceed

via / by vincenzo di giorgi

One of the most difficult challenges in my life at the moment is managing Ripley’s medical and allied health appointments. He has many people involved in his care: GP, Paediatrician, Allergist, Psychologist, Occupational Therapist, Speech Therapist for Feeding, Speech Therapist for Language, Gastroenterologist, Dietician and Haematologist. Beyond the obvious difficulty in managing our time and conflicting appointments, there is also the toll it takes on us physically and emotionally. Not only do appointments end up taking a whole day if they are in Melbourne, but it leaves us very little time to enjoy and participate in normal everyday activities.

At the moment we are working through the NDIS application process but without any formal diagnosis. It is difficult because the process and information online support physical or intellectual disabilities and autism. There is a strong focus on those topics, but for those of us in grey areas, there is less direct support and information. I am so new to this process and sometimes feel like a fraud to even be part of it, given how many strengths Ripley has, but I trust the medical team advocating for him to be part of it.

It’s hard not to feel hysterical or wonder if we are putting our family through all of this for nothing. Often our feelings are dismissed by family or friends, who mean well, but perhaps don’t know how to talk to someone going through something so traumatising. Then the medical professionals are either supportive or too narrow-minded. Those with personal experience or who work with affected families every day are so supportive and kind and it helps so much. On the difficult days I wonder often if I should just scale everything back and let Ripley be, perhaps we are just terrible parents, or perhaps we are making a fuss out of nothing. Then I will speak with a friend, or connect online with someone in a similar predicament and I become aware of how real this all is.

On tough days, I wonder should I just give up, give in, and let it all go. Let my worries float away and trust that Ripley will develop normally… There are so many parts to this thinking which are appealing, and I certainly do worry that as a parent, in modern society, we expect too much from children. On the other hand, I know that Ripley has experienced trauma from his birth, illness at birth and ongoing chronic pain. There is strong evidence around chronic pain and its impact on our brains (See ABC show ‘Ask the Doctor’). We have some diagnoses (sensory processing issues) and many possibles (speech delay, anxiety, autism?). We don’t really know what is at the heart of his gastrointestinal difficulties, beyond 6 allergies.

I’m sure there are many other parents with children with disabilities, delays and/or chronic illnesses who have these thoughts too. It is so tiring to continue to advocate for our children, but I know in my heart that despite those feelings of inadequacy, or of feeling that perhaps I’m making it all up in my mind, those experienced professionals who suggest the OT, the psych, or the NDIS, are doing so because it is in Ripley’s best interests. And our goal is to participate in and enjoy life the way everyone else does. To be free of pain, to not be affected by allergies, to not be afraid of uncertainty, these goals are for our whole family because the impact of these ongoing and chronic illnesses and issues affect all three of us.

So I will continue to advocate, to use my time and energy to pursue the information and diagnosis that we need in order to get the support that we need. And I write this to hopefully remind myself that I am doing it for a reason, it is not for nothing. And despite the lack of progress at times, it is important work and I’m the best person for the job.

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