Strong Voices

For 24 hours at least after Harvey was born we were in new-parent bliss. But the discovery of a heart condition and the suspicion that there was something else going on changed everything.

Then came the diagnosis of Cri du Chat syndrome. All the typical experiences and thoughts that new parents should have were completely wiped away by worry and grief. And questions. How severely would Harvey be affected? Would he ever walk or talk?

This beautiful little boy was vulnerable. He would be my forever baby, my adult child. I felt like my life was over. I would never be able to work again and there would certainly never be any retirement. Was my marriage strong enough to weather this? The short answer was no, as I found out when Harvey was only one year old.

Living overseas, the first year of Harvey’s life was spent engulfed in grief, specialist and therapist visits, great attention to feeding so Harvey wasn’t a ‘failure to thrive’, and watching everything Harvey did and wondering if it was new-baby stuff or part of his syndrome. Even though Harvey was sick with reflux, he was relatively healthy. He was beautiful, but most of all he was loved.

After a year, I moved back to New Zealand to start life as a single parent. There were no week-abouts for me, no weekends off, no support with big medical decisions. There was absolutely no chance of ever getting back into the workforce. I calculated that by the time Harvey was ready to leave home – if the system even supported that – I would be retirement age. I had started university study to work towards a business degree and I’m glad I did, because although I wasn’t in paid work, it gave me the skills I needed to become Harvey’s CEO. I am now responsible for recruitment, training and ongoing administration for carers who assist with Harvey’s care.

For this responsibility I can claim a total of $300 per year. If I were to be paid for this role, I believe I would certainly be remunerated with a few extra zeros. Think of the skills I have had to acquire, the advocacy required to get even the basic of needs met. The applications for the funding required, just so things are safe and accessible.

I was judged for not entering the workforce once Harvey started school. I am on call 24/7 – up at night when I hear Harvey struggling with his breathing. If I were a shift worker doing nights, would I be expected to take on a job during the day as well?

Who would be on call for the many extra school, medical and therapists’ appointments?

Harvey’s needs are so great that he is unable to do anything for himself.

I believe that Harvey has a right to access the things he needs, such as education. He has the right to have support to do normal daily tasks in a safe manner. This includes being able to enter his home, have a shower and move around his community. He is a boy with the same goals, dreams and rights as any child.

Even though Harvey is considered to have very high and complex needs, I have had to advocate for most of his equipment. It’s a battle that is fought at every single level. I have had the privilege of being supported by many amazing therapists and medical professionals, and I am very grateful to be supported to care for my son in New Zealand. This situation I’m in is nothing new. People up and down the country are faced with their own unique challenges, but all of us have one thing in common and that is fighting the ‘system’.

It wasn’t until COVID lockdowns that the majority of the population got a taste of what it is like to live in isolation, with barriers restricting everyday lives. it meant having to go without, having limitations imposed, and adapting to life in an unprecedented way. Ironically, for me and many others, we felt like we had been in training for this for years. Many special needs families are forced to find coping strategies and to learn new skills, such as living on a very limited income. Practising gratitude is a big part of this process.

My life has been extremely busy in the past few years. My mother was diagnosed with motor neurone disease, my younger brother passed away six weeks after her diagnosis and that left me to organise my older brother with autism into supported living for the first time. It has been a difficult time navigating the system for three of my closest family members. It has been a time of many extreme lows.

One of the things I have gone without over the years has been the ability to pursue a relationship. For many years I simply didn’t have the energy or time to commit to someone.

A glimmer of hope came when, due to Harvey’s change of needs, I successfully applied to be a paid full-time carer. My responsibilities haven’t changed, but the funding and the flexibility have felt empowering. I feel for the first time that my role as Harvey’s carer, doing all of the 24/7 on-call things that are impossible to recruit a part-time carer for, is valued. I celebrated by spontaneously organising a wedding.

A while ago I met a man I felt a special bond with. Our journey has not taken the usual route. We still don’t live together, but we have made a commitment to each other and we are navigating life together and figuring things out. My new husband has a big heart and is gentle, kind, loving, calm, patient and funny. These qualities mean we can be a family, however that looks. We can now dream and plan for a future together. My husband knew from the moment he met us that we came as a package. He sees beyond Harvey’s disability to the funny, cheeky and clever boy that he is. A boy with rights, dreams and hopes just like any other.

Caption: Jo and Harvey Ellis have had to work long and hard to thrive as a family.

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