I am a carer of two (potentially three) children with challenges such as Autism, Intellectual Disability, ADHD, Anxiety, Oppositional Defiance Disorder, Avoidant Food Restrictive Disorder, Sleep-onset Association and Learning Difficulties such as (but not limited to) dyslexia. These are children with high emotional volatility, that have difficulty settling/separating from their caregiver, that in no way would cope within a school environment and who need very specific, targeted support to meet the smallest academic milestones. They need to be given at least 6-12 months to settle into the right environment outside of our home, before they are able to feel safe. Environments that prove to be too structured and inflexible my pressure sensitive children are not able to cope with, and this results in meltdowns that only I, as their main support person, can guide them through. I carefully manage the minefield of each day, ensuring my children know what to expect through a schedule, but shielding them from too much information that will cause anxiety and non-compliance. My children have been suspicious and mistrusting of people since birth. They don’t let Doctors or Specialists examine them easily, they don’t allow Dentists to check their teeth. It’s my job to get them there, and then deal with the disappointment when we fail at these tasks. Their dad is supportive when he is not working but his ability to be able to manage the high needs of his children is limited. He has not spent a decade researching and problem solving the number of unique challenges his children have. He hasn’t spent almost every waking and sleeping moment with these children, learning to navigate their complex needs. Instead, he has been working as hard as he can to support a large family on a single income (as I care full time for our disabled children), to put food that we can barely afford (due to the astronomical costs of living) on our table. Very particular foods, that have to be prepared in very specific ways, to be accepted. For me to step away from my children takes a huge amount of preparation and effort, and I can’t fully remove myself, I must be on call ready to provide support.

The physical, emotional, and mental support provided by myself to meet the varying needs of my children is taxing. The constant research, courses, the worry and stress, the toxic environment my family lives in due to the constant cycle of meltdowns, aggression, violence is taxing. As much as I try, the difficulties to outsource help due to my children’s struggles in being parted from me means I get very little respite. The constant state of high alert that I live in to keep my children and others safe, this lifestyle where there is no room for my needs, is not sustainable. I am still picking up all my broken pieces after having a mental breakdown a year ago. I had no option but to take a steep learning curve to understand my body’s need for respite. And I’ve had to work hard at this. Massages where I fight not to sob, because any time my body and mind stops, I get hit with overwhelm. Respite through a workshop (to further upskill my parenting) that I couldn’t complete because I was so exhausted, my need for rest so intense, I became nauseous and soon after leaving began vomiting. Crying myself to sleep at night, or crying when we are driving in the car because my kids (while not quiet or settled!) are restrained so I can lower my alert levels. Forcing myself to go away and stay somewhere to rest. These are the things I have had to learn to make myself do.

It is not possible to comprehend the hardship of being a caregiver without being a carer. When I imagined creating a family of my own, I didn’t know parenting could be like this. That a family that I love and adore, that I dreamed about and craved, could chip away the very essence of my soul and destroy me from the inside out. I have to work every day to stay here in this house, and to love and care for these children that are my world. Because with every part of my being, my brain is telling me to leave, that I need to matter, that this environment is not a safe place for me.

Pedicures. I personally couldn’t think of anything worse than having someone touch up my toenails. But I can say this – to have someone care for you, when all you do is care for others, should be a fundamental human right. I must constantly remind myself what my core human needs are, to sleep, eat, and exercise – meeting these needs for my children (who struggle to sleep, who struggle to eat, who struggle to do activities and people) doesn’t leave a lot of room to be able to meet these needs for myself. I can’t relate to the desire to have a pedicure. But I can see how a tiny spot of color in a life full of grey would lift the spirits of a carer. And I can relate to needing a healthier pastime than sitting alone considering ways to make your pain stop.

I have lived with domestic violence. I have lived in poverty. I have helped raise five siblings. I have worked under the most extreme pressures. And yet nothing in my life compares or could have prepared me for the hardship of being a mother of children with disabilities, a full-time carer. The heartache knowing that I will be a carer for one of my children until I die, the fear wondering how my child will be supported when I die, the financial burden of supporting my child until they die.

Supporting the carer directly supports the disabled person. My children deserve to have a mother that doesn’t spend her days crying, that can care for them with patience and love, that has the energy to support them to do the things they can’t do for themselves, to give them if not an easy life, one that has quality and meaning. My heart grieves for our lack of natural support (what is a village?!), and I now have to try to find ways to use governmental support that may not meet the needs of our family. I fear for the difficult future that my beautiful children will have, because I can’t continue to support them, unless my needs as a carer are recognised, valued, and provided for.

I have a deformity in my back that requires surgery. But I have to live with the stabbing pain and days of not being able to walk because I can’t spend five days in hospital for the surgery, I can’t spend three months recovering without lifting (I don’t have enough funding to pay support workers to work full time for three months). I can’t run the risk of becoming a paraplegic should the surgery go badly (how do I care for disabled children if I am disabled myself?). Massage lessens the pain for me, and provides me with more mobility, as a very temporary measure, so I can care for my children. Now this provision has been taken away.

We have been let down by the governmental agencies and services who have been entrusted with our care. Our family sits on the outside of society looking in, not typical enough to fit in, to unfamiliar for most to feel comfortable around. And we seem to sit on the outside of disability too, too disabled in some ways, not disabled enough in other ways. By nature, Autism is a disability that prevents social “competency”, my children have always struggled to let other people in. Our circle of support or tolerated people is tiny.

 I followed the guidelines that the Ministry of Education gave me for my eldest son, against my better judgement. They told me I was doing my son a disservice if I didn’t put him into Kindy. They said he needed to be around language and learn social skills and that I was not enough, Play Centre was not enough. One Kindy we tried on day one carried my son in from the playground against his will, and because he wouldn’t sit on the mat they put him on a naughty chair in the corner of the room, told him he wasn’t allowed to get up, and left him there to scream. A (different!) Kindy my son attended for a year, but the MOE declined to provide him with a teacher aid, even when he was so overwhelmed he couldn’t do anything but sit on a couch and rock. The first words my son spoke to me were “Kindy scary” and that’s when I decided to listen to my child and pull him out. One year of Kindy resulted in one year of burnout for my son, essentially a year of lock down for our family – he refused to leave the house, he didn’t want to go anywhere other children might be. If people visited our home, he hid in our car in the garage. Not following my gut and putting my son in an environment where he was not supported, that was so detrimental to his mental health, made me feel like a failure. The lack of support provided by the MOE was instrumental in my decision to homeschool my children, alongside the knowledge that social pressure is too much for them.

The wait time for support services through agencies like Explore (currently 18 months) means that help comes once we’ve already muddled through the issue, and being told all the things I should have done to support my child after the fact made me feel like a failure.

I went to a doctor two years ago to ask him to do a referral for my second son, he told me I should get marriage counselling to help with my ineffective parenting. He also said something along the lines of creating a safe room to put my child into when he was being naughty, that I was feeding into my child’s tantrums when I tried to support his needs and calm him down. I asked for help, I was told that despite being in the trenches doing the hardest parenting there is, I was the problem. He knocked my confidence and made me feel like a failure.

My breakdown a year ago may have been prevented if I was receiving adequate support to cover the high support needs of both my sons. At the time of my breakdown a (different) Doctor encouraged me to try again to seek a diagnosis for my second son. He has only recently been diagnosed, and I’m currently awaiting supports to be put into place for him. Not knowing the extent of my son’s support needs, and missing the boat for early intervention, has made me feel like a failure.

How do I go about teaching my children to learn how to be disabled in the right way so they (but not me!) can continue to get support under the new Purchasing Rules? tried their whole lives to support my children, so they don’t live with such a high level of anxiety, so they don’t struggle to do everyday tasks, so that they can interact with other people, so that we can have a bigger circle of support around us.

Since becoming a parent I have been told I am not good enough. I don’t try hard enough. I am making things up, being overly dramatic, all children are challenging. I project my anxiety onto my children. The list goes on. The only real way I have felt supported was when Specialists recognised the struggles of my children. And then with the funding that told me, we see the very unique and individual support needs of your family. You as a carer are valued and we will look after you, we will support you so you can support your children. But that support is gone now. I don’t matter.

What should be family time on the weekends when my husband is home becomes a time for me to try and repair my broken self so that I have enough energy to be present and support my children the following week. Flexible use of funding opened respite and support avenues for our family that made life more manageable. I try every day to teach my children how to be part of a society that for the most part isn’t set up to accommodate them. Flexibility of support helped us to flourish, in very small but significant ways, to become stronger and braver, to build skills to venture out a little bit more. Not enough to prevent me from having a breakdown, as I explained above one lot of funding to support two high needs children just wasn’t enough. But meaningful respite activities for my one son that does have funding helped give my mind and body room to slowly begin its mending process, without adding extra pressure to my plate. For that I was grateful.

I would love to be able to use external carers to help me with my children. I wish I could make use of this provision and truly have regular periods of respite. With additional funding provided for my second child, I was hoping I would have enough money to employ someone to accompany me to appointments and on outings, to help me keep my children safe, I struggle to support all their needs at once. With time they might be able to build a relationship of trust with my children. I might be able to train them to be able to provide the right support to my children when they are dysregulated or melting down. To date I’ve never had anyone who has been able to support me with this, people intervening generally make the situation worse. But then I realise, if the goal is to ultimately train a support person so I can have respite periods away, my sons would need one support worker each as their needs are polar opposites. Would they need to travel in the support worker’s car (but I can’t pay mileage can I)? My eldest son can’t cope with additional people travelling in our car, and he may not get in someone else’s car. There are so many factors to consider, and it’s the constant need to plan/prepare/address so many complex needs that overwhelms me. By nature, my children are demand avoidant so I can plan all I like but that doesn’t mean they will be able to comply.

Currently I am in recovery/survival mode. I feel extremely anxious at the thought of managing advertising, interviewing, employing staff, potential employment issues, inputting timesheets, training, helping establish relationships, dealing with the additional anxiety of having strangers in our home. For a settling in period of 6-12 months before I may see true benefit. What would my turnover levels of staff look like, after my children and I put in all that effort of getting to know them, and if they should accept them? And will I find suitable staff in this little country town that I live in, especially if I can’t pay mileage for them to travel to us? Where do I draw this ability to do all these executive functioning and highly social tasks from when my body needs regular shutdown periods in order to care for my children?

I’m really devastated by the changes to the Purchasing Rules, and the confusing way they have been communicated. I’m heartbroken because I feel that my place in society as a carer has no value. My role as a carer is everything that I am, it’s all I have the capacity to be, there is no room for anything else. That I can devote my whole life to this service and be so easily disregarded. What value should our society place on caregivers supporting children who statistically are more likely to be taken advantage of, more likely to end up in prison, more likely to commit suicide? I request that you reconsider the impacts you are causing to a community already struggling beyond what they can bare. We are broken. We are vulnerable. We need to feel you fighting for us, not against us.

Yours respectfully and with much hope,

Renee