I don’t need a parenting course.
It has taken weeks to write this, not from lack of desire to speak but for mental capacity and sheer exhaustion. Normally I am a polished writer, however this is raw as it comes as it is, having been written in snatched minutes.
I am 41 married, work full time, educated to postgraduate level at one of Australia’s best universities and I have worked all my life. I pay tax and I contribute by working in the public sector. My autistic children are 6 and 9 and both have ADHD and anxiety and are very bright. They are lv2, the eldest while having exceptionally high Intelligence, has the emotional development of a child years younger. His asynchronous development is extremely hard to explain, or quantify how difficult our day to day is. School has recently advised us of the level of need for both our children is significant. They both require one-on-one attention to manage their social emotional needs and frequent overload. Diagnostically their needs are ‘moderate’. They are both very bright but significantly impacted. We understand our children will be moved off the system.
My 9yo is able to attend school due to our commitment to years of significant therapy and ongoing work on social emotional development. We have accessed these therapies via NDIS funding, and despite our combined income we would not be able to afford them independently. In this time we are proud of the progress he has made. He is a wonderful boy, we love him immensely. We are very lucky that our local public school has supportive staff, I can not imagine what more they can do.
But we are constantly reminded of the different life he lives to other kids in his peer groups. The amount of onsite support it takes at school, inclusion teachers, teacher aids, individual learning programs, and meeting after meeting with external OTS, psychologists and Support workers. Despite this it’s constant work-on-top-of-jobs-work as parents. He doesn’t have friends, he is not invited to birthdays, he is aware of his differences and isolation his self-esteem is low. His disability is invisible, people can’t see how hard he works just to move through the world, and to do ‘normal’. People don’t see how hard we work to hold him up from the side lines. It takes very little to unbalance him, and weeks of work, hours of scaffolding can collapse very quickly when his nervous system and ability to cope is completely spent. There is so much his misses out on because participation just takes too much. He looks ‘normal’ and this works against him.
This last two weeks has been hard - my youngest has been suspended from school after a violent outburst; had we not been able to attend during the crisis an ambulance would have been called. Only a few days before this my eldest was on a school excursion on a few days earlier and also experienced a melt down due to continued bullying, resulting in high stress and a request for me to leave work to attend him. My husband and I are still reeling from the aftermath of these issues. We don’t know what our youngest needs, so we will head back to the paediatrician and no doubt try something new. The follow up meetings, alterations to school schedules emailing, and waiting and hoping not to get another contact from the school is constant. And shame, we feel shame frequently.
The self-flagellation, constant questioning of our worth as parents is exhausting. But in my moments of clarity I know I do not need a parenting course.
We have been on this Autism ADHD Anxiety diagnosis journey for 9 years now. If I had time to read more books I’d be writing one instead.
I have been physically assaulted by my children, I’ve had food thrown in my face in public, been hit, scratched, punched, kicked, had my hair pulled out, had objects thrown at me. I’ve had a child slam and break a shower door in my face. I’ve had to lock myself in a room to protect myself and the other child. I’ve cried in front of doctors, allied health workers, school staff and strangers. I’ve declined invitations for myself and my family. We can’t just get a baby sitter and have a night off. We’ve changed schools, changed doctors, changed therapists, changed paediatricians, changed to a very few friends. Somehow we’ve found a syncopated rhythm and we move forward through school years, and I’ve kept my job, the NDIS has made this possible. We have supports in place, my children mostly manage to attend mainstream school and they are receiving an education. I keep being assured that with these supports they will eventually thrive and their capacity to participate and contribute will grow.
We were told this was a ‘marathon not a sprint’ by the diagnosing paediatrician.
Our relief? The NDIS would be running with us.
It now seems however that this is not the case. We are ‘moderate’ needs but I cannot comprehend a life with these children where I can continue to work - to keep my own job if I will be required to do more to fill these gaps. I feel like the loss of NDIS funding will see all our support network collapse. My husband and I will be alone, and I as the mother and lower income earner I will take up the slack. Aside from impacting our home and security, what happens to my boys? The deep tragedy of this is no matter how available I am, I will never be enough compared to what they need.
While we are here - What is Thriving Kids? How will they thrive with supports removed that have taken years of trial and error to coordinate ? Will my child have equity in access in a state funded system? Or will it just depend on where I live and another waitlist for a default provider?
Over the last 9 years I’ve already raged with frustration and isolation. I have fought with my husband, lost opportunities and grieved. Our parents are aging, and even if we could move to be closer to them, our duty will soon be sandwiched between responsibilities to our children and their aging decline. I don’t know how to do more.
Parenting autism is extreme. We have experienced the trauma of bullying and ostracism of our family from one school community. We have advocated constantly, self-educated and sought support and formed a trusted care team and routine which is carefully constructed. We’ve remained constructive when faced with ignorance or prejudice. I do not comprehend how we would continue without the help we have found and funded with NDIS.
My youngest recently said, ‘I don’t know how to be like the other kids- I don’t know how to be normal’ and ‘my brain is buzzing’. He also describes his emotions with the most wondrous complexities of colour and feeling. He is truly an original thinker. My elder child taught himself basic math equations in his head at the age of four. His world is all numbers and he could hold court with any one of any age who wants to yarn about cricket. I love my children and want the best for them like any other parent.
For our lawmakers who do not consider autism to have a significant impact or to be a disability that needs life time compassion and support- I challenge you. I challenge you to please listen to the autistic community, deeply, deeply listen on the impact of losing NDID funding.
Neither of my children are cruel, or bad or undisciplined or unsupported. They are amazing - I believe they will be amazing if supported. But in the day to day their brains and bodies go into overdrive and they can’t cope. There is frequent high emotional distress in my family. There is no silver bullet in the form of a school adjustment or parenting course to provide what we need. We are devoted and caring and turn up every day. Every new step in life involves learning new limitations and working out new possibilities and adjustments in our network to get us through. NDIS is essential for this.
We need compassion and understanding and not vilification and rejection.