July 4, 2022

Navigating Autism, our neurodivergent family

FILED IN: parenting

Our family and autism… Navigating Autism + ADHD

Trying to write this has been harder than I would like to admit. 

When first suggested by our OT as a way to document the real-life impact of Autism on our family I thought “yep, I can do that, no problems” I mean I’ve written two best-selling books, so this shouldn’t be hard.  … and yet here I am procrastinating 2 months later. 

Because to sit down and actually peel back the layers of autism and our family, focus on anything but the silver linings and actually take a really honest look at how autism affects our day-to-day life, I’m not sure I’m strong enough for that. 

It’s like taking a slow-healing wound, and ripping it open again, spreading the edges, and poking it with a stick, raw, open, vulnerable, painful. 

As a mother, I think instinctively we all default to the positive. We are good at seeking out the good in situations, and in people, in focusing on the wins, the positive moments and the small victories. But now I have to actually voice the harsh reality of our situation with autism and neurodivergence, and honestly, that terrifies me… I think if I see it all written down in front of me, I might not be able to hide and pretend everything’s ok anymore. 

Nevertheless, for my kids, I will.

Our situation is not unique, it’s not special, it’s happening in thousands of households every single day, with parents and kids struggling just the way our kids are.

We have 3 children, with disabilities, 3 children on the spectrum, 3 children with varying sensory triggers, emotional regulation needs, communication styles, therapy schedules etc etc 

Erik is 10, has Autism , a developmental delay and severe sensory regulation issues 

Holly is 7 and has Autism, ADHD and anxiety, she is on multiple medications every day to regulate explosive, unpredictable and violent rage issues. 

Hudson is 2.5 years old, while unofficially diagnosed as of yet, he presents with classic autism traits, severe speech delay, stims, social skill lack etc 

And while I know that NDIS must focus on the child in front of them, one case at a time. We MUST be able to step back and look at the bigger picture of the family, because the family matters. 

How autism affects our family …. 

Every single day, we walk on eggshells, we wake up knowing that getting 3 kids out of 3 having a good day, is a very very rare occurrence. Hudson wakes happy, while eating is still a big problem for him, our mornings are usually productive. Erik, being 10, follows an incredibly rigid routine, down to exactly which pans to use to cook his eggs, and what time we must leave for school. He’s great with routines, as long as NOTHING changes. He avoids his sister like the plague, their relationship together destroyed by violent outbursts and abuse towards each other during various meltdowns and struggles.  Holly wakes up angry,  often she tries to destroy things in an effort not to attend school, on a good day, she will have a meltdown but pick up the pieces within the last 5 minutes available, on a bad day, she will throw chairs, threaten family members, hurt her brothers, punch me, try to break household items and refuse to get in the car.  Or when we get to school she will refuse to get out of the car. 

By the time school drop is done, you can find me crying in the car most days. The trauma from this will be long-lasting. 

  • I cannot take my children to the supermarket 
  • We don’t go to places like the movies, carnivals, or events, and if so we take a two adult, one child ratio.
  • They don’t have sleepovers, or visits with friends unless we are there to monitor them or they are a stable part of our network with trust.
  •  Our kids don’t take change incredibly well, so we don’t plan too much in advance, and if we do it’s secretly planned and then introduced to the schedule in the right way. 
  • Park visits, must have a fence, and very minimal other visitors
  • We had to coordinate our entire life so most activities are done with either both parents present to help manage the kids or no kids present. 
  • We are often asked about how our kids react to activities or external environments, and to be honest, I don’t know currently, because our life is a game of survival, and that survival instinct stops me from taking them anywhere, it is not safe, and it certainly is often not worth the trouble. 
  • If you walked into my home, you would imagine we moved in yesterday, there are no decorations, no extra furnishing, no picture frames, no personality… because everything can be broken, and everything could be a weapon. 

We have some outside support network, with my parents often taking the kids for a few days each school holiday so I can work, 

And Aaron’s parents have recently started having the kids for 2 hours a month at our house so that we can have a meal outside the home together. 

Navigating Autism, our neurodivergent family

On an average week our family will have 4-8 therapy appointments in the diary, only 2 of these can currently be scheduled by the therapist attending school, so for every single other appointment it is up to me, their mother to be the taxi, manager, emotional regulation, and logistical manager. 

I cannot work a normal job, and I certainly cannot work full-time hours. I am lucky enough to be self-employed, but realistically I cannot work enough hours due to my kid’s therapist providing a good enough net income. I am a full-time carer for my 3 kids. 

Every week I lose DAYS of income-producing hours to therapy appointments, but there is no other alternative. I have had to be a stay-at-home mum/carer for 10 years, the lost career opportunities, lost income, lost superannuation accrual … is insurmountable. And weighs on me heavily.

My husband has also had to turn down multiple career opportunities due to our children’s therapy appointments and his need for flexible hours to manage and support our children with autism

While therapy has been life-changing for our kids, it is also a full-time job managing appointments, referrals, and plans, reviews, carers, funding etc etc. not to mention the stress, trauma and gaslighting that comes from having to prove over and over again how your kid’s disability is “worthy” of support and acknowledgment 

It also means I clock up on average 30,000 km a year in my car, the majority of those due to the extra running around for therapy appointments. 

I’m not a bad mum. I know I’m not, 

I read the books, I listen to autism experts, listen to the child psychology podcasts, and ADHD hacks. I implement the strategies, I keep my head, I’ve stopped yelling, (because what’s the point), I take deep breaths, I give them the cuddles even after they have punched me, left bruises all over my body and told me they wished I weren’t alive. 

I’m a good mum, and this is my normal 

But the reality is, this isn’t normal 

And most days, I am not ok 

I am anxious most days, I suffer PTSD from situations and mothering experiences that should not trigger PTSD in a neurotypical world. I am their full-time carer, and don’t get me wrong there are some wonderful moments, but they are often overshadowed by the moments where I am their physical and verbal punching bag 

What soothes one child, creates overwhelm for another child. How one child plays and expresses themselves, will then trigger a meltdown for my other child. 

And in a world where roadworks and a slight detour on the way home from school can trigger a 3-hour meltdown and then 2 weeks of self-loathing because “why am I like this, I just want to be normal” from my 7-year-old…. it’s tempting to book a one-way flight to vegas …

And while I’m being extremely honest…  My husband and I have had many conversations, despite our deep love for each other, where we have discussed separating, purely because, with 50-50 custody, we as adults might survive this with a shred of our sanity intact. 

And that makes me wonder, is this a type of conversation that happens in neurotypical families. Is the relentlessness of parenting kids with special needs so great, that a couple who loves each other deeply, seriously considers separating simply to provide some respite from the situation. 

The reality is, if I was in a relationship with an adult who had aggressive meltdowns and physically hurt me the way my kids do to me, I would be advised to leave and seek police help. 

When you are a mother to that person instead, no one cares, no one wants to hear … there is no help. 

Help for the children, yes, therapies, support, and after many hours of fighting tooth and nail, physical support. 

But support for the parents, none in my experience. Apart from a token support group here and there, where you have the luxury of choosing 2 hours of work vs 2 hours of “connection” and it doesn’t conflict with your child’s therapy appointments you may do so. 

In fact, if I’m being honest, I see my children’s therapists more than I have seen my friends. Life is kids, therapy, meltdowns, and in the cracks, coffee and work to get through. 

The cherry on top of all of this, and while I’m grateful for it, my children’s disability is not visible. So on top of learning to manage their disabilities themselves, they are also learning to navigate a world that does not understand there is something different with their brain, they are simply labelled as “bad kids, misbehaving, annoying, too loud, inappropriate, embarrassing etc” which in turn triggers more anxiety and self-confidence issued. 

Erik has found his place in the world of sport, but without constant physio and OT, he fatigues too quickly, and will fall behind his peers, being unable to fully participate in this as he grows will take away one of the small social successes he has had in recent years, and what has been the conduit for expanding his friend circle, beyond the 1 friend he had. 

Holly also is struggling socially in school often labelled “too much”  her constant vestibular stim creating issues at school, we have found success managing this with compression garments, but like any garment, as they grow and wear and tear, I need to replace these often, and they are not cheap. 

I hate relying on the government for ANYTHING. In an ideal world, we would be able to both work full-time hours and pay for everything ourselves, but that is not reality, and that will not be achievable in this lifetime. 

So I continue to battle, for the bare minimum, for the support, skills and structures that should allow my kids to be able to grow up, live independently, find a job they have fulfilment in, and be active contributing members of society. 

I push and fight now, so that my kids have a chance at a future, so they don’t end up on government payments or a disability pension for the rest of their life or stuck in a cycle of victimhood…. I fight now just to make sure they can have the same opportunities every other “normal” child gets. 

I do not want to be at these therapy appointments every day 

I do not want this to take over my entire life 

No part of me enjoys having to apply for funding just to take care of my kids 

I do not want a life where medical waiting rooms are so normal my kids feel more comfortable there than they do at a park. 

I do not want to be made to feel like a criminal at every turn, made to feel like someone who is robbing the government or taking advantage. 

I am not!

I am asking for the bare minimum… to ensure my kids have a future and I don’t end up having a full breakdown every day. 

Please, its time to look at not just one child, but how this is affecting a whole family, siblings, relationships, family finances, long-term mental health, the wider community 

It’s bigger than me

It’s bigger than all of us. 

So let’s keep fighting together.

x Shona

follow more of our journey here https://www.instagram.com/sexy_selfish/

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