I have a chronic illness, and I’m starting a business.

This weekend, I went to a business bootcamp and it was fantastic, however I made the mistake on day 1 of being like everyone else and standing to network, sitting on the regular chairs, etc. By the end of the day I was nearly in tears as I was in so much pain.

So day 2 I put my health first. This meant sitting on the couch the organisers had set up for me all day and limiting the amount of time I was standing around.

Why am I sharing this here?

For the first time, I felt truly disabled and invisible. The first day showed my disability. The second day I felt invisible.

As I was sitting away from the tables, and wasn’t able to stand up with everyone else for networking, not many people spoke with me during the networking times. There was a real push about networking during the event, and the requirement to sit apart made this harder.

If ever you are at a networking event, please keep an eye out for those who may be invisible… Is there someone who is sitting apart for any reason, or struggling to join in, go up and talk with them.

A couple of people did make an effort to talk with me and it meant so much. For the most part, people just didn’t look past their table or those who were standing around.

Visibility matters and it means so much to those of us who feel invisible due to disability and chronic illness. It can also be a win win, you never know who you’ll meet just by seeing those people who are invisible at business events.

This is a message that is worth sharing to those who run business events, as well as those who attend them. Since this boot camp, I have been reluctant to attend events as I am not sure that they will be inclusive, and my health needs to come first.

At this event, when I was seated on the couch, I was not able to approach people, and even the organisers did nothing to ensure I was included.

Making sure that all participants are included is a simple way to ensure your event is a success for everyone who is in attendance, and often it’s those who are quiet are the ones who need someone to keep an eye out an approach them first.

I hope those who organise business events read this and work hard to make sure that no one feels invisible during their events (especially if they say ‘pair up with someone’, they make sure that everyone has someone to pair up with).

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I am autistic and ADHD, only diagnosed a few years ago. Growing up, I was told that being independent is what adults are… the way it was framed was that I should be able to do everything myself. This has made it difficult for me to ask for help.

The goal of being ‘independent’ is often used to shame adult children for living with their parents, for single parents feeling guilty for hiring a cleaner, and so much more.

It’s also a concept that seems so strange when you think about it…

I look at my parents, for example, they don’t have to do everything for themselves. They have each other, and when one of them can’t do something, the other one is there to step in.

Even in the workplace, bosses have assistants and staff, meaning they don’t have to do everything themselves. They are not ‘independent’ in their businesses, they have people who support them and do tasks for them.

I have been told that I need to have a goal of being ‘independent’ and getting to a stage where I won’t need supports such as a cleaner any more. In other words, I am told that I, as a single person, should be doing everything for myself.

This seems to be the goal of the NDIS too… their focus on ‘capacity building’ seems to have a goal for participants to be ‘independent’ and not need supports any more. My question is simple. Why does everyone have to be ‘independent’? What’s so wrong about needing or even wanting supports?

There is a strong narrative around ‘socialisation’ and having a partner, especially as I was growing up. So many people say that humans are social creatures, and that socialisation doesn’t seem to take into account the amount of support those social groups provide, meaning that we are not completely ‘independent’. When it comes to parenting, we often mourn the loss of our village and the support that can provide.

I know independence means different things to different people in different contexts, I still don’t understand why being independent has to be the ultimate goal. What is wrong with needing or wanting supports in order to live our best lives?

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This may be true for some people, but for me, and many others, parenting is a learned skill. This is why people such as health nurses, lactation consultants, parenting experts, and more exist. They exist to teach parents the skills they need to navigate life as a parent.

As mentioned before, I was an undiagnosed autistic & ADHD parent. I became a parent at 24 years old, after nearly 4 years of marriage (two weeks off if we’re counting). I thought I’d be fine as I had spent most of my life around kids, being the oldest of 4 kids, taught Sunday School, been paid as a babysitter since I was 12, and generally been around kids and babies my whole life. I knew how to do things like change a nappy…

But nothing prepared me for the relentlessness of being a parent, especially when I had a baby who screamed for the first 3 months of his life.

There was so much to learn, from tired signs to caring for nappy rash, to so many other things.

Then there was the conflicting advice.

Feed on demand, but also have a schedule.

Have the baby sleep in his own room, or have him in yours, or co-sleep.

And on… and on….

One thing I realised after I was diagnosed and reflecting on all of this was that so much advice assumed the whole family was neurotypical.

A lot of the baby care information was pretty standard, but as the kids grew, more and more information was aimed at a neurotypical family, and I did my best to follow it all.

I was told this information was ‘best practice’ and following it would mean I would have happy, healthy kids.

Because I didn’t know better, I believed them and struggled to follow it – from toilet training to sending the kids to school, to packing lunch boxes and sitting up for dinner, to homework tips, and so much more. Everything was aimed at a neurotypical family as that is what I thought we were (spoilers, we weren’t).

I was terrified that if I didn’t follow the parenting lessons I’d been taught, I would somehow set my kids up for failure.

The fact our family didn’t follow things due to health issues didn’t help either… but that’s a post for another day.

So many of the lessons I was taught, from the pregnancy & birth classes onwards, were aimed at neurotypical families and didn’t leave any wiggle room. We were told in no uncertain terms that if we didn’t follow their advice, we were ‘bad parents’, and no one wanted that.

As an undiagnosed AuDHD parent, with crippling self-esteem issues and being terrified of failure, and being taught not to trust my gut, I tried to follow those lessons.

Sometimes I wonder what things would have been like if the lessons were different, if they weren’t so prescriptive and taught some other methods to try, or if the trainers were open for discussion, if things may have been different. As it was, I did my best to follow those lessons to the letter, and I saw other parents who have since been diagnosed do the same.

One thing we all had in common was we desperately wanted the best for our kids, to make their childhoods easier than ours had been, to protect them from the battles we fought, but not really knowing what they were… so we followed the lessons we were taught as parenting is not always natural and, for many of us, it doesn’t come naturally.

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I thought I would share my story. Please remember, I was undiagnosed autistic & ADHD, though was diagnosed with post-natal depression (PND) when my first was three months old, and again with the second when he was only a few weeks old.

I had grown up around breastfeeding women. My mum was a member of Nursing Mother’s, now the Australian Breastfeeding Association. My Aunt worked for them. There was no doubt in my mind that I would breastfeed my kids.

I was pretty lucky with both of my babies. They seemed to come out looking for a feed and we didn’t have issues with milk supply, latching, or anything like that. I had a couple of bouts of mastitis, but nothing major. I can only remember one time it was particularly painful, and that was easily fixed.

I was more frustrated when breastfeeding counsellors and the health nurse would talk about sensations of letdown. This is where the hind milk came down, the milk with all the good stuff in it. I never felt that and thought I was doing something wrong, though the kids seemed well fed and were growing like weeds.

When I was admitted to hospital for PND after my second was born, I fought to keep feeding as they wanted to put me on medication that meant I would have to stop. Honestly, if I had to stop before he was a month old, that would have had a major impact on my mental health as, at that time, I felt like the fact I could feed my child was the only thing that was working right then. Not to mention having to worry about formula and bottles when I was barely keeping on top of the most basic of housework (I didn’t know about executive dysfunction then).

I didn’t particularly love breastfeeding. I never had the blissful feeling described in the magazines and parenting books, but it was something that was fairly easy and I knew I had fed my child. I could also feed wherever, though both me and my babies hated wraps or anything to cover them when they fed. I was even on a TV current affairs program with my first when he was around 10 months to show that most people didn’t really care about feeding in public (that’s another story).

Breastfeeding was fine for me, it was something that I knew was part of being a parent…

Then I got pregnant with my second while still feeding my first.

Breastfeeding and pregnancy was not fun at all for me, however my child still wanted to feed. I had many phone calls with the breastfeeding counsellor on strategies to help him wean, at the same time investigating tandem feeding in case he refused to stop. Thankfully, he did wean, thanks to things like watching The Simpsons while feeding as he wanted to watch at the same time (he was 18 months old & liked the colours & noise).

The biggest issue I had with breastfeeding was a sensory overwhelm of being touched all the time. I didn’t know anything about sensory overload at the time, and I believe the feelings of being ‘touched out’ had a major impact on my mental health as well as my marriage. Honestly, by the end of the day, I had had enough of being touch, especially when I had a toddler and a baby. Breastfeeding was an easy way to feed my child, however it meant I was constantly being touched. Then, when my husband came home and wanted a hug, or more, I was ‘touched out’ and he took it as a personal rejection, even when I tried to explain it wasn’t personal, I simply didn’t want anyone touching me.

From talking to others in groups about their experiences of breastfeeding, the fact that was easy for me was a blessing. My babies latched on without difficulty and I had a good supply, however the sensory issues were a thing I didn’t realise at the time.

I am also grateful I was able to breastfeed as the idea of managing formula and bottles (quite apart from the cost) was stressful!

If you would like to, share your experiences of being an undiagnosed autistic and/or ADHD mother and breastfeeding.

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I was also an undiagnosed autistic and ADHD parent. When that boy was 20 years old, I received my diagnosis, and his younger brother was 18.

I navigated 20 years of parenting not knowing I was AuDHD, and it was tough.

This is something that not many people talk about.

There is a lot about parenting autistic and ADHD children and how to provide for them, but not a lot around what it’s like being an autistic and/or ADHD parent, and if there is information, it’s assuming that you are diagnosed already.

Since my diagnosis, I have been looking back over my life, especially the years of parenting and the impact it had on me, how it shaped my outlook on life and parenting. The good, the bad, and the ugly.

Some things are downright painful, especially when I think how hard I tried to parent in a neurotypical way, following all the ‘rules’ that were set out by various experts – health nurses, school teachers, magazines, books, and so much more.

Some are complete joy, such as discovering things like lizards, pirates, dinosaurs, Rubiks cube, and so much more as my kids were going through their various special interests.

Some things are confusing, even now.

For a while, I have complained that no one is speaking about this, then it hit me… I’m not speaking about it either!

I figured that I have this blog, this place on the Internet where I can share things, so why not start here.

My dream, eventually, is to write a memoir about it all, until then, this is my story. I will refer to others in my life, often by an initial only, but, as much as it’s my story, they are part of it.

Please, join with me, ask any questions, and you’re welcome to share your own stories in the comments too.

I should also mention, the information won’t be in any particular order, things will be posted as I think of them or a memory pops up.

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No business mentor has ever taken me as a whole entity. They have all wanted me to pick one thing and focus on that… whether it’s my workshops, Junior Writers Club, books, administration tasks, or whatever. They want me to choose one thing to focus on.

Here’s the thing… my brain simply doesn’t work that way.

Everything I do is simply part of me. It’s who I am.

I simply can’t focus on one thing for too long, I need the variety. It’s the variety that makes my life interesting and helps my brain stay engaged.

I need the more ‘boring’ tasks of bookkeeping and administration.

I need the creative things where I can hide away from people, like writing my books.

I need my workshops for the social interaction.

I need the online, the offline, the craziness of it all.

And here is where business programs fail me.

They try to push me in their box, to make me fit their view of what makes a successful business.

They simply don’t see that my brain needs something different, and if I had the right supports in the craziness that is my brain, it could all be successful, it just doesn’t look like they think a business should look like.

What triggered this thinking is that an amazing opportunity has come up. It’s something that I have been dreaming about for a long time and fits in the big picture banner that is me, however, it doesn’t fit with any of the ideas the business coaches think I should be doing…

I wish that business coaches and business programs were designed to embrace my weird brain instead of being told to reign in my ideas, as when I do, nothing happens!

I also wish that I had the confidence and resources to forget about traditional business programs and find the supports I need on my own… but right now, I don’t have that.

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Over the last few years, I’ve realised how much of that is because I’m autistic and ADHD.

The complexity of the noise, the unfamiliar food, change of routine, being in a house that is not my own, having to have my mask firmly in place to be social and look like I’m having fun, it’s all exhausting.

A couple of days ago, I saw a post on social media talking about how all those traditions are important to someone, and it got me thinking.

I don’t enjoy Christmas day, one of the best was a few years ago when my kid and I spent the day building Lego instead of joining the extended family. However, all those traditions are important to my parents, especially to my mum. She loves having the family there and feeding all of us, and having us there for presents.

It’s also one of the few times I see my brother and his girlfriend as they live on the other side of the state to me.

Because the day is important to someone else, I make the effort to go down to be with the family.

I did a few things to accommodate myself.

I don’t drink, so I brought some alcohol-free wine to drink. I only ate what I wanted from the buffet. When I felt fatigue overcome me, a sure sign of a meltdown, I quietly went to a bedroom to lie down. I had a book with me and had some time reading to recharge. I also went home again in the evening rather than staying there for a few days.

I have also spent today, Boxing Day, hibernating and not talking to anyone much.

This is what I have needed to get through Christmas Day, when my ideal would be having a quiet day at home.

It is important to accommodate the needs of others, especially those I love.

For one day, I will allow myself to be uncomfortable and overwhelmed in order to make others comfortable.

It’s one day in the year.

For the next couple of days, I will be resting, hibernating, and recharging.

I also know that my family enjoyed the day and appreciated having me there, and that is important too.

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One thing I’ve been wondering lately is – can being a parent cause trauma to the parent?

Honestly, I don’t feel like I’ve got trauma from my upbringing. Yes, it was challenging, especially things like going to 8 different primary schools in two countries, not feeling like I fit in anywhere, that sort of thing. I’ve come to realise that my childhood was pretty good. It would have been nice to know I was AuDHD earlier, however I don’t think it would have changed things much if at all (I was born in the late 70s and was a kid in the 80s and 90s).

If anything, I feel like more trauma was caused from being a parent.

From being gaslighted by doctors for pains I felt when pregnant.

From having an unsupportive partner.

From having a baby who screamed for three months, only to be told it was ‘colic’ (spoiler: it wasn’t).

From having chronically ill kids and being gaslit by doctors and schools and others when trying to get support.

From seeing my children struggling the way I did and not knowing how to help them even though I fought for them for an education.

From juggling part time work with being a single parent and having little support when I needed it.

From having kids who used me up in every way possible.

From doing the best I could with what I had at the time and being told that it wasn’t enough.

From trying to manage everything and feeling like I’m letting everyone down – my kids, my family, my friends, my boss, society – because I wasn’t coping, I wasn’t thriving.

From completely losing my identity to try to be a ‘good mum’, yet still being told I’m falling short.

I feel like so much out there is trying to force me to blame my struggles (not quite sure that’s the right word) on trauma from childhood. From trying to blame my parents for causing trauma…

I know that my parents did the best they could with the tools they had at the time.

When I look up the definition of trauma, it says “a deeply distressing or disturbing experience”. This is the dictionary definition. With this, my childhood certainly doesn’t fit the box… however my experience of being a parent fits this box much better…

Even doing a search on ‘can being a parent cause trauma’, the results are not helpful. They talk about childhood trauma, there isn’t much about issues caused by being a parent.

Here’s my question, is this a thing?

Can children cause damage to their parents?

Can being a parent cause trauma?

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It comes down to pattern recognition…

This all started yesterday when I met someone who is doing something similar to what I want to do… only with crafts instead of creative writing & reading. Since our initial conversation, my mind has been whirring on all the things I would do if I had a studio to run programs and activities.

I know that I could do a business plan with this.

I could list the different workshops and programs I could offer.

I could do a financial forecast as I’m good with spreadsheets and numbers.

But there’s a roadblock.

I can come up with the best plans in the world, I can dream as big as the next person, however I don’t currently have the money or supports I need to make them happen.

What does this have to do with pattern recognition?

This is the pattern I’ve seen most of my life.

I will have a goal or dream, then the practical realities rear their ugly heads.

After I finished high school, I wanted to go to Europe and study and go on a literary tour… but a lack of funds meant that was never something that would actually happen, at least in my mind. Looking back, if I had thought it was a reality and spoken with my parents, then there may have been a way…

When I started my first business in 2002, I started with next to no money, and time and again, plans had to be shelved due to a lack of money to make it happen. I had some supports, but not as many as I probably needed, and that took money.

Even now, I have so many picture books that are not commercial enough for publishers that I would love to publish, I simply don’t have the money.

This brings me back to my idea of having a studio to run workshops, have a shop where I can sell some of the amazing indie books that are out there, and more… I simply don’t have the funds to make it happen. This is the pattern.

So, I stop dreaming and having big goals in any meaningful way.

I will think the big thoughts, and write down the plans, and no longer expect that anything will come of them.

This goes back to my post the other day about vision boards…

Without money and practical support, I work supporting the goals and dreams of people around me, and publish the books that I can afford and continue to make do.

I hope that one day, my pattern recognition will be proven false, but until then, I’ll keep ticking along the way I’ve been going…

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When I was growing up, these would be created by cutting pictures out of magazines and greeting cards and whatever else the organsier could provide.

Now, they are often created in programs like Canva using stock images.

I know how to do them, I’ve done my fair share of them over the years. Often, they are a fun exercise, however they don’t do anything to motivate me towards any goals.

I have been reflecting on this recently, along with working out how my brain works, and a few reasons why it doesn’t work come to mind. Here are a few things that I’ve thought of.

1. Now or not now – my brain seems to work on a ‘now or not now’ basis with little concept of time. I have no idea how long five years will be. I have no idea how long five years ago was. I’m constantly surprised that I’m 47 years old and my kids are adults! Trying to do a vision for the future feels like writing fantasy.
2. What does the trainer want to see – because I often have no idea what 5 years in the future will look like, and because I’ve been told my dreams are wrong, I think ‘what does the trainer or facilitator want to see?’ and add that to my vision board. A big house – check. A fancy car – check. High income – check. Overseas holiday – check. Because I’m often not given space to work out what I actually want, my vision board really is a work of fiction!
3. My dreams are ‘wrong’ – For most of my adult life at least, I’ve been told that I need to strive to be bigger, better, earn more money, climb the ladder, or whatever you want to call it. I have been told that wanting to live in a small cottage somewhere and write my books & run the odd workshop isn’t thinking big enough and that I need to work on my ‘growth mindset’. In short, I’ve been told my dreams are wrong. This is one of the reasons that visions boards don’t work because I’ve been told that my actual dreams are too small.
4. Reality of life – another thing I’ve found is that the reality of my life to this point hits hard. All the struggles I’ve had because I’m autistic and ADHD come to play and I think ‘what’s the point of dreaming this way when the reality is that it won’t happen?’ This is not me being negative, it’s realistic. I’ve had dreams and done vision boards before and have never been able to make them happen. It has nothing to do with mindset and more to do with practical reality and supports.
5. Forgetting it exists – the idea of vision boards is that you put it up and look at it often to remind you of where you want to go and let it motivate you. Even when I’ve had them printed and on the wall, I tend to forget that it exists, so it doesn’t serve any practical purpose other than adding to the stuff in my house!

Vision boards may seem like a great exercise, and I know there are many people who find them highly motivating. However for me, they don’t work very well.

It would be interesting to see what happens if I ever get to the stage where I have proper supports to make things happen, at that point, they may actually work. But for now, they serve no practical purpose other than being an exercise to pass the time.

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