Patreon and Twitter followers might know that I had some personal stuff come up in October and then life has happened and now I’m in the midst of moving stress as we prepare to leave Brisbane where we have lived for the last two years and move back to Sydney.
And I keep thinking “It’s fine! After all this settles down then I’ll get on top of everything again”
Which… is something I’ve thought a LOT of times. And I wonder if that’s something you think too. It’s so easy to get stuck in Treading Water sure that it’s just a matter of waiting out THIS latest hiccup, drama, setback, crisis, change, period, school holidays to begin, school holidays to end, for something to start, for something to end for that significant day, week or month… and that then when things get back to my normal life THAT is when I’ll make a real effort to get back on track. That’s when things will change. That’s when it will be easy. There isn’t much point before then while things are still chaotic. Still in flux. I just need to prepare myself so that when things calm down I’m ready to take advantage of it. Right?
But isn’t it funny how those “normal life” times don’t seem to happen very often? Or last very long?
I’m reminding myself again that “normal life” isn’t actually… normal. The chaotic life. Things being in flux. The migraines. The depression. The Rejection Sensitive Dysphoria. The fatigue. The stress. The overwhelm… that’s normal. That’s my normal life.
I don’t need to prepare to pounce upon the fleeting moments of calm and non-crisis to take advantage of them. I need to use the fleeting moments of calm non-crisis time to prepare for the overwhelming stressful chaos of ‘normality’.
So here is where I am at:
I’m living in a city which is currently in Lockdown in order to prevent a coronavirus outbreak getting out of control. I’m preparing to move to a different city which didn’t sufficiently Lockdown and which already has a coronavirus outbreak getting out of control.
Side effects from my stimulants were messing with me and making everything worse so I’ve stopped them temporarily but can’t get an appointment with my psychiatrist at present. I’m getting migraines every second day. My son is both incredibly stressed and incredibly bored.
But this, right now, is my life. This is my normal.
And I need to work with that rather than pretending that a good nights sleep is going to make anything feel less stressful and overwhelming.
My son has been sick with tonsilitis and just as he was recovering I started to come down with it too. I’m feeling slightly better today, thank goodness and he’s finally well enough to go back to Kindy. So we’ve been in Survival gear for close to a week now and soon it will be time to change gears back to Treading Water.
And I know I still have so many unfinished posts about each of the individual gears (I’ll get there!) but today I wanted to write about something very important about the Treading Water gear.
Treading Water is the STUFF gear where you focus on not letting things get worse. Between Survival (where you do what you absolutely need to to get through the hour, day and week) and Usual (whatever usual looks like for you!)
If your executive functioning is impaired (whether because of a neurological condition like ADHD or Autism or because of chronic stress, illness, pain or fatigue) it seems to makes sense to use rewards and punishments to try and get things done. “If I do this list of things then I can reward myself with…”
And It might work! For an acute episode of “I just don’t wanna” reminding yourself that you can sit down and read your book or watch netflix or play video games just might give you that little spark of motivation. It might? I mean it sounds good in theory. But… honestly? That… has never really worked for me?
And it’s not just that there is no accountability. I could just… sit and watch TV. Nobody is stopping me.
But “If I do all these chores THEN…” doesn’t really work as a sufficient incentive for me to do the chores because the problem isn’t that I don’t want the chores to be done. Or even that I don’t want to do them. It’s that… I can’t do them.
I like having a clean house. I really hate having a sink full of smelly dishes. There is a reward already built in to doing these chores in that I don’t have to live in filth and bad smells. I don’t actually need extra incentives to want those chores to be done. The incentives are kind of… built in. The problem isn’t a lack of incentives. So increasing those incentives has no real effect.
Let’s look at a very frequent scenario for me: I have a lot of dishes that I can’t manage to do. And I want to play The Sims.
So I tell myself:
“Elise. You absolutely cannot play The Sims because you have not done all of the dishes!”
And generally one of two things happens after that:
A. Failure: I play The Sims anyway. I feel guilty for breaking my own rules.
B. Success: I do not play The Sims. I do something unpleasant instead like reading The Bad Internet.
But do you notice something important about the ‘Successful’ scenario B above where I resist playing The Sims? I still didn’t do the dishes.
And when this happens day after day, week after week… well sometimes I do get around to doing the dishes and it’s hard and I force myself to do it (or I am forced to because we don’t have any clean spoons) and it takes SO LONG and then I don’t have time to play The Sims afterwards and I feel frustrated and resentful and sad.
And every time I do something “fun” or “relaxing” I have this little voice in the back of my head telling me that I’m being lazy and bad.
And this usually happens when my responsibilities are genuinely Too Much for me and everything is really hard. Isn’t that funny? I never accuse myself of being “lazy” when things aren’t overwhelmingly difficult.
So what’s absolutely vital about being in the Treading Water gear. When you’re working as hard as you can just to keep things from getting worse… is that Leisure is not a reward.
Leisure is a chore.
It’s a thing I need to do. It’s a task on my to-do list that I need to tick off and say “yes, I did do a fun thing today just for fun.”
Because when it comes right down to it playing The Sims is actually as important as doing the dishes.
If I don’t do the dishes my sink will fill up with dirty dishes and it will smell and I won’t have any clean spoons to eat with.
If I don’t play The Sims (or watch TV or read a book or…) then I will just feel like I am getting wound tighter and tighter and I’ll spend too much time reading The Bad Internet and “relaxing” by only doing things that make me feel bad and therefore somehow sidestep the guilt of having a good time when I really shouldn’t.
And that doesn’t help me in the Treading Water gear. It doesn’t help me prepare for changing gears back down to Survival or up to Usual.
It just makes me feel bad about myself. It makes me feel worse about myself.
So. Leisure is a Chore.
Do a fun thing. Just for fun. Not a project that you also find fun. Just… consume an art. Play a game. Read a novel. Listen to a podcast. Listen to music. Watch a video.
Because that isn’t a bonus that you need to earn. It’s something that you need.
Posts like this are only possible due to the generous support of my Patrons. They’re amazing and very good looking!! If you’re not one of them and you like what I do please help me by joining them and supporting STUFF up! your life on Patreon.
I loved the fact that I was going to have a baby and I was in awe of the fact that I was growing a person. But being pregnant was horrible. Although I didn’t throw up every day the nausea was relentless. Every hour of every day I felt horribly sick. The thought of food turned my stomach… but an empty stomach was my number 1 vomit trigger.
And for most of my pregnancy people kept being positive and re-assuring me that it would get better.
It gets better after 12 weeks! I was assured by many. It didn’t for me.
I kept being given more magical getting better points to look forward to. And I kept feeling sick. It gets better after 15 weeks!
When my Aunt asked me when the baby was due and I joked that I only had 5 more months of vomiting to go she was aghast. “You might feel better tomorrow!” she chided me. It gets better after 18 weeks! And I felt guilty for being so “negative”. I might feel better tomorrow, I reminded myself. It gets better after 22 weeks! And every day I attempted to face the day as though I didn’t want to vomit up every organ in my body. And every day I struggled and “gave in” and felt guilty for relying on anti-emetics and tried to ration them out and resolve to take less of them and to be stronger and more positive. It gets better after 28 weeks!
And after 28 weeks passed and I still vomited almost every day – and felt like I wanted to even on the days I didn’t – regardless of how many dry crackers or ginger flavoured *anything* I ate… People stopped telling me to look forward to it getting better.
And that… helped an enormous amount. When I stopped assuming that if I was positive enough and motivated enough and enough enough… when I gave in and assumed that I’d feel sick every day until the baby was born… I took my anti-emetics first thing after I woke up and scheduled them regularly throughout the day instead of “waiting to see if I was any better today/this afternoon/this evening”.
And I realised that I’d spent a lot of my pregnancy not only feeling nauseated – but feeling like that if I wasn’t somehow imagining it or faking it I was thinking about it too much and therefore making it worse. As though my morning (lol, all day. all night.) sickness was a monster who could be summoned by saying its name and could only be vanquished by pretending hard enough that it didn’t exist.
But. I wasn’t making myself sicker by acknowledging that I was sick. Preparing myself for feeling terrible and not trying to fight against how sick I was wasn’t a self-fulfilling prophecy.
But it allowed me to feel a bit less terrible about myself and not attempt more than I could manage and allow myself the rest I needed (I wore a fitbit throughout my pregnancy. My record for lowest-steps achieved in a day was less than 600).
And I realised… that I’ve spent a lot of my life waiting for things to get better. Waiting for next week. Waiting for next year. For the clocks to change. For the weather to change. For the weekend. For the afternoon. And thinking that if I only pushed myself to believe hard enough that I wasn’t struggling… then I wouldn’t be.
But depression and anxiety and executive dysfunction aren’t monsters that can be summoned by name any more than nausea is.
The idea that if you go to bed determined enough you can wake up motivated and driven is toxic. As though because motivation and executive function are driven by chemicals in your brain you just need to adjust your mindset is as nonsensical as the idea that behaving as though you don’t need glasses will make you see more clearly. Or that walking on a broken leg will make it heal faster.
Being prepared for your struggles won’t make them bigger. It just makes you more prepared. Because your life isn’t going to magically become easy after the weekend or tomorrow morning or when the weather clears up or when the seasons change or in the new year. Some of those things might help!!
But right now is your life too. And pretending that things aren’t the way that they actually are doesn’t help.
So. If you want to and it feels okay to do so I want you to imagine that you won’t feel somehow more rested tomorrow than you have any other day recently. That you won’t somehow feel enthusiastic about doing the chores that you’re avoiding. That you won’t feel more organised or enthusiastic or driven than you did today or this week or this month.
What does that change? What expectations of yourself do you need to adjust and does that change anything about what you think you are capable of right now? Is there something you can do a bit of or half-ass so it’s not so much of a problem tomorrow?
Posts like this are only possible due to the generous support of my Patrons. They’re amazing and very good looking!! If you’re not one of them and you like what I do please help me by joining them and supporting STUFF up! your life on Patreon.
Okay so you’ve read about STUFF and you’re keen… you’ve read about getting started and know it’s app-neutral and you can do it on paper or digitally or on a whiteboard or skywrite it.
But what exactly do you put IN your STUFF list? Everything? Is it everything?
Nope. It’s definitely not everything. Please don’t put in everything!
I don’t know about you but I’m often pretty overwhelmed by my own list. Even scheduling something on a calendar makes me want to rebel against doing it. I used to think that if I could just find or develop the perfect system then I couldn’t forget about the important things…
But I could still ignore them. I can ignore anything. I’m really good at it!
So the important thing about your core STUFF list is that it’s not things you’re going to want to ignore. At least – not directly.
One of the most important items on my STUFF list is to look at my calendar. In my Treading Water gear it’s to look at and update my calendar for today and tomorrow. In my Usual gear it’s to look at and update my calendar for the next two weeks. Even if I know everything that’s on it. Even if I know it’s empty. I still look at it. And a lot of the time I was wrong about what was or wasn’t on it. And I often think of things that should have been on it but weren’t.
But the calendar items aren’t part of STUFF. Just the reminder to look at the calendar. So if I’m really overwhelmed by my calendar (or my general to-do list or housework list or anything else…) I can ignore that without ignoring STUFF as a whole. Of course, I try not to ignore my calendar because that leads to missing important things… But knowing that I will sometimes ignore my calendar at least that ignoring doesn’t ALSO lead to me ignoring everything else.
So your STUFF doesn’t track your mood (use a mood tracker!)
STUFF doesn’t keep track of your todos (use a to-do list!)
But add all of those other things to your STUFF list.
Other things on your list should be core habits or daily tasks. For me I have taking my medication, feeding the cats, making the bed, planning what’s for dinner tomorrow, engaging in a leisure activity and eating breakfast, lunch and dinner.
Finally I have some daily goals on my list. To meat my move and activity goals on my apple watch. To meet my “karma” goal on To-doist. To check off a certain number of tasks under my housework and social categories on my to-do list.
So what’s on your STUFF list?
Prompts to check other lists or apps (calendars, trackers, lists)
Regular daily tasks
What’s the difference between habits, tasks and goals? Ehhh. It doesn’t matter. I don’t think it’s important. But I hope this gives you an idea of the kinds of things that go on your STUFF list.
What’s NOT on your STUFF list?
Your general to-do list of once-off things
Your less frequent repeating tasks
Bigger or long-term goals
STUFF isn’t a task-management system. It’s not designed to do the grunt-work of scheduling or task-management. There are LOTS of apps that do those things pretty well. STUFF will be your “hub” which allows you to keep using ALL those other things at once instead of trying to cram everything into one app or system which you spend 12 hours in a row adding everything into and getting all the settings exactly right and then never open again.
One chore I hate – but not as much as I hate doing the dishes – is sorting laundry. It takes so long. And it’s so boring.
I used to try and sort as efficiently as possible. Because surely that would mean I would spend less time doing it. So I would sort laundry into all of the different piles and categories it needed to be in all at once.
This would lead to be frequently having a brain freeze and spending 2 or 3 seconds mentally trying to work out whether a sock was a shirt or pants before remembering I had a socks pile.
I’ve discovered that it’s actually faster – and even more fun – to sort in a way which seems terribly inefficient at first glance.
The idea is that I am never sorting into more than two categories at a time. I take one pile of laundry and split it into two piles.
Clothes or Not Clothes?
Kid Clothes or Adult Clothes?
My Clothes or Husband’s Clothes?
Hang in Wardrobe or put on the shelving unit?
Put on a shelf or in a basket?
And so on and so on. I tried making a flow chart to illustrate this but it quickly got really REALLY big because it keeps going until every pile contains just the one kind of thing that are all stored together.
One important thing is that I don’t fold or even turn things the right way around. It’s just sorting – either THIS or THAT. Some branches of the “tree” are much shorter than others.
Once everything is sorted then I turn each thing in each pile the right way around. Then I fold each pile.
This way I’m doing the same thing over and over a few times in a row rather than having to switch gears to fold a shirt and then fold a pair of pants.
And even though when I’m sorting I am handling the same items over and over and over again as I keep sorting and dividing these piles of clothes… it ends up being SO much quicker than if I tried to divide everything up all at once… because I don’t get those moments of brain freeze. And it’s not so intolerably tedious and boring that I just HAVE to do something else and leave it another month.
What’s your second-least favourite chore? Is there a way you can make it easier on your brain even if it seems more inefficient at first?
If you’ve got ADHD like I do then you may be familiar with RSD. Being rejected by peers can cause devestating emotional pain – and the fear of being rejected can be debilitating when it comes to forming new connections and making friends.
About a year ago my son threw his water bottle and the hard lip of the lid landed directly where my toenail grows out of my big toe.
It hurt more than anything else I had experienced up until then. (A few months ago I had a migraine which beat it for most painful experience of my life. But the toe is still coming second). It was so painful I could do nothing but hold my foot and rock back and forth moaning for what felt like years. It hurt so badly that I lost touch with the rest of my senses – I was unable to see or hear. The only thing that existed was pain.
But I remember it pretty clearly because there wasn’t any sense of panic or danger. I wasn’t worried that I was going to die. I didn’t think I’d need an ambulance or even a doctor. I knew that the problem I was experiencing in that moment was one of pain and that the pain I was experiencing was not a reflection of the level of damage done to my foot.
And it really made me reflect on how rejection sensitivity has hurt me in the past and how devestatingly painful I have found it to be rejected by my peers. Being reminded of parties I didn’t get an invite to as a teenager and young adult will bring me to tears at 37 years old. But I’m trying to recontextualise these experiences (and the new ones that keep coming up and will do forever because, and it makes me want to throw up to even articulate this, some people will probably continue not to like me that much and will reject me over and over until I die) by thinking about my toe and remembering that the pain is not the damage.
When we’re in the midst of that excruciating emotional pain it’s natural to link our pain to an assumed level of damage.
What could I have done to deserve this kind of treatment that hurts SO much? Am I fundamentally a bad person? I will never be able to recover from this level of hurt and I will be weighed down for it forever.
But I’ve found it helpful to remember that the pain is not the damage. The pain is real. It is all encompassing and overwhelming. It’s real and it’s important.
But just as with my toe the pain doesn’t correspond to an equal level of emotional or psychological damage. The problem is pain.
“Zip” was born by C-Section in May 2016. “Now, I don’t want you to worry” the anaesthetist told me. “He’s having some trouble breathing on his own but he’s on oxygen and he’s going to be just fine.” I didn’t feel worried. I didn’t know if them telling me not to worry meant I should be worried?
They wheeled him past me and let us spend a moment looking at each other before he went off to NICU, where he would live for the next five days. As I looked into his eyes I felt certain that there was nothing whatsoever wrong with him. He was absolutely and utterly perfect.
Our biggest struggles in the first two years of Zip’s life were based around the fact that he did not sleep. For most of that time he slept no more than 40 minutes at any one time. When he was 2 months old we started co-sleeping. Sleeping in 30 minute increments isn’t sustainable and I decided since I was inevitably going to fall asleep while trying to resettle him it would be sensible to decide in advance where that would happen.
Having given up almost immediately when trying any of the most gentle sleep-training advice it didn’t seem right to keep asking for help. If I wasn’t going to “do anything about it” all I could do was wait it out and hope that he started to sleep at some point. But lack of sleep – mine – occupied most of our early checkups with the doctor.
Zip himself didn’t seem to be suffering from sleep deprivation at all and would quite happily, and silently, stare at the trees as they passed as I pushed him for hour after hour in the stroller. He’d vocally object if I let the stroller slow down – but wasn’t interested in dozing off. I figured if he could lie awake and contented with the rhythmic vibrations of the stroller for that length of time he simply wasn’t tired.
I had a little day-bed for Zip which I would lie him down on on top of my bed and I’d lie next to him and nap. When I woke up he’d still be lying there kicking his legs.
When he was around 9 months old I remember being excited because I’d read somewhere that babies often learn to point and use simple gestures around then. That would be really cool, I thought. To be able to fulfill his requests. He didn’t point to anything. But he clapped when I said “clap!” and he played peekaboo with everyone on the train.
At our 12 month visit I read through the list of milestones in my blue health book. “Talk to your GP if your child isn’t waving or pointing” it said. “He isn’t waving or pointing,” I told her. “But he claps and plays peekaboo so I’m not concerned.”I didn’t realise I should have mentioned that he didn’t seem to follow my pointing. If I wanted him to look at something he’d just look at my finger. Or at my face. “Look, Zip!” I said. “It’s the moon!”. He looked at the air above my finger.
“He makes very good eye contact and he’s very social,” My GP replied. It was true. Zip enjoyed basically everything and especially being able to share that enjoyment with others. As soon as he laughed – which was almost constantly – he’d look around and be delighted that other people were smiling and laughing back at him.
“Got at least three words? Mum, Dad, Food?” the GP ticked off in her book. “Yeah a few” I said. Those weren’t the words – his were “hi”, “shoes” and “hat” although he didn’t pronounce “shoes” in a way that anyone but his parents would recognise he used it consistently and vocabulary is what is important, I had read, not pronunciation. He’d started crawling a few months before and was pulling himself up on furniture. Normal, normal, normal. Delightful to have such a boring child, I joked.
At 17 months old Zip started at an occasional daycare centre two days a week. We both cried that first day but after a few weeks he transitioned very well. He loved it there but the look of absolute incandescent joy on his face when I came to pick him up made it even more exciting to take him home.
At 18 months Zip had 10 words if I counted “hi” and “hey” as two seperate words. This time the GP was a little concerned. She told me it was just on the lower end of the normal range so we should get his hearing checked.
I was shocked when his hearing test showed some hearing loss. He’d always seemed so sensitive to noises – he’d start crying as soon as I heard a siren in the distance during our walks. As soon as the siren was gone he’d be back to his happy leg-kicking self though. Nevertheless his hearing was below the normal range and he was diagnosed with Glue Ear. Zip had surgery three weeks later.
By the time of our follow-up appointment with the ENT I’d filled a page of the little book I was using to keep track of Zip’s words. And that was without listing the individual letters (all of them, both upper and lowercase) and numbers (all of the digits) Zip could confidently identify. As his pronounciation improved the seemingly random – but consistent – sounds he made as we walked up or down the stairs resolved into the numbers one to sixteen and Zip delighted in counting down his blueberries as he ate them off his plate. I bought Zip a “Reading Eggs” subscription and he played it almost every day on the iPad.
Some of Zip’s mums group friends also had speech delays. A little girl of Zip’s age was injuring herself beating her head against things in frustration of being unable to communicate. Zip was never frustrated. He was always, always happy.
“Ay Ay Ay” he would prompt me and I would say “A!”. “Bee!!!” He jumped up and down in his chair with delight and we recited the alphabet over and over and over.
The daycare had some concerns about his sensory processing. He didn’t like to participate in messy play or in the water play area or sandpit. They weren’t “concerned” they stressed. They just thought they’d mention it. I was already attending a sensory playgroup that a friend of mine – an Occupational Therapist – was running. Do you think he has sensory issues? I’d asked her. She gave me a sensory profile to fill out. She told me the profile came back pretty normal. Probably just a personal preference that he didn’t like stuff on his hands. She gave me some tips for encouraging him to participate more in that kind of sensory stuff – and of course we were already attending the sensory playgroup once a week.
At around 20 months old Zip started saying “mumumum” when I picked him up from daycare. The more excited he was the more mums there were.
He learned to say “Dada” while my husband was at sea. He was away for 3 months after Zip’s second birthday. We looked through photos of him almost every day. “Dada!” he’d say. “DADA!!!” he squealed excitedly as he saw his father come home.
At our 6 month check-up after surgery the grommets had grown out. 3 months later the glue-ear was starting to recur but the ENT suggested we use some nasal spray and have a language assessment done just to confirm that his speech was on track.
I was looking forward to impressing the speech pathologist with Zip’s enormous list of words. He could identify an incredibly long list of animals, colours, shapes – and of course he knew and could recognise the alphabet and numbers up to three digits. Another parent I’d met at the playground had told me that she’d noticed him counting up and down the steps and asked me how old he was. She mentioned that kind of 1:1 counting was something even some of her grade 1 students still struggled with. “You’ve got a clever one there!” she told me.
(A lot of people pointed out that he was clever. Especially if I wanted to ask if anything else he did or didn’t do should worry me. I didn’t feel worried. I just wanted to know if I should be worried.)
“Hello!” The speech pathologist greeted Zip.
“What’s your name?”
“How old are you?”
“Are you a boy or a girl?”
Zip grinned at her. He didn’t know the answers to those questions. He didn’t seem to know that they were questions. Was I supposed to teach him those things?
It was a pleasure to assess Zip. Testing of his language skills revealed that he presents with expressive and receptive language skills that are below the normal range for his age, with his receptive language skills at the level of a child 16-18 months of age and expressive language at 20-22 months of age. He would benefit from intervention focusing on increasing his understanding and use of language.
Zip was 2 and a half years old. It didn’t seem possible that somehow during the last 12 months as he’d made incredible leaps and bounds in language progress he’d in reality fallen further behind. Behind what? Everyone does things in their own time, don’t they? That’s what people kept telling me.
Suddenly my husband was posted to Brisbane. We announced the move to our families over Christmas and moved into our new house in Brisbane in mid January. We wondered again about Zip having sensory issues as he blocked his ears whenever there were loud or deep noises. On our drive to Brisbane from Sydney we spent the night at my Aunt’s (a retired early childhood teacher) house. “You don’t need to have any worries about him!” she exclaimed after meeting him. “He’s absolutely fine!”.
I found a speech therapist and an occupational therapist and made an appointment with a paediatrician. My new GP put us on the public waiting list and I called private paediatricians. There were only a few that were accessible to me via public transport and I was offered an appointment in June. It was February.
Suddenly it seemed like all of Zip’s peers were toilet trained. I’d just kind of assumed that we’d do that when he showed an interest in the toilet and could consistently tell us when he needed his nappy changed but he hadn’t done any of that. I started reading up on Toilet Training and found the “Oh Crap!” potty training method which seemed to be well respected and it told me I’d missed the ideal window of potty training. She asserted that the ideal time for potty training was as soon as the child could recite the alphabet in order. Zip had been doing that for more than 12 months but he’d certainly not been ready to toilet train back then… had he?
It turns out Zip has a bladder of approximately the size of a small swimming pool and the pelvic floor strength to hold it just about indefinitely. So that was fine although I did (and still do) have to prompt him to use the toilet every time. He’d only recently started saying “I’m thirsty!” to request water after several weeks of me saying “I’m thirsty!” every time I had a drink myself or handed him his water bottle. It didn’t happen often as I prompted him to drink much more frequently than he’d ever ask. If I ever forgot to offer him water then by the time he asked for it he’d be parched and down the bottle. I didn’t want to rely on him to wait until he was that desperate for a toilet. Toilet training resources assured me that it can often take a full 12 months for a child to be fully self-prompted with toileting so I wasn’t worried.
We tried to test Zip’s hearing again but he was uncooperative with the test. The noise bothered him and he stuck his fingers in his ears and refused to remove them. The staff at his daycare commented that he seemed to have very sensitive hearing and stuck his fingers in his ears if anyone was crying or if a loud tank drove past (the centre backs onto an army base).
Zip made progress every session with his speech therapist. She constantly exclaimed to me about how I was doing everything right. The way I spoke to him was exactly what I should be doing. We only had a few sessions with the Occupational Therapist. His sensory profile wasn’t completely typical but didn’t meet the criteria for any kind of disorder or intervention. I described his outbursts and tantrums and she described how to handle them which was what I had already been doing. We decided to prioritise the speech therapy.
Just before his third birthday Zip started to read. He’d recognised individual words for quite some time but at around 3 years old Zip was decoding unfamiliar words. We’d played a lot of reading eggs – which he loved. But he quickly got frustrated with the games that relied on understanding the meaning of sentences.
Zip began to use pronouns although he didn’t use them consistently or correctly. “You” and “me” were frequently – but not consistently – reversed. His speech was a combination of well formed frequently used sentences and individual words or two-word phrases. He didn’t seem to have anything in between.
My Grandmother called me to assure me I had nothing to worry about. “You can tell from that video where he looks at the block and really decides where to put it down that he’s really very clever!”. I wasn’t worried. I just wanted to make sure that his deficits in some areas weren’t overlooked because of his – dare I say it? People say all parents think their children are geniuses – giftedness in others.
In June we finally saw the paediatrician. He asked me what I was worried about. “I’m not really.” I told him. “I have ADHD so I guess I’d like to make sure that if he’s inherited that that we identify it early. His Speech Therapist and Occupational Therapist have both told me that he has some ‘Red Flags’ for Autism.”
“Have you ever lost him in public – like properly lost him?” No…
“How often do you absolutely lose your shit with him?” Occasionally…
In summary Zip is a healthy 3-year-old boy who presented with a speech delay in the context of a conductive hearing impairment, but certainly is making excellent progress and catching up with the input from speech therapist and has good nonverbal communication skills. He has some mild sensory processing issues and is an active boy, but I do not feel he is overly hyperactive. He also has a small amount of situational anxiety, again not (pathological) concerning at this stage, and no unusual obsessions. He is highly likely, based on my findings, to re-develop glue ear and this should be carefully watched for, and repeat hearing test would be worthwhile obtaining, even if he is uncooperative, it is worthwhile persisting. He may require repeat ear nose and throat assessment and management. I have reassured Elise that Zip does not fulfill criteria for ASD and I am hoping he continues to improve and catch up with his language development. I would be happy to review him if there were any concerns in the future, but at this stage I do not believe there are many.
“You’re worried for nothing,” he assured me. I think he’s got some hearing loss again and you’ve both just got a bit of an anxious nature. Get his hearing checked out and I’d be surprised if I ever see you in here again.”
I felt vindicated as I left the clinic. Finally an appointment where they hadn’t told me that Zip wasn’t drastically worse than I had anticipated. He was fine! Just like I had always thought!
But then I did start to have doubts. And I really wondered if something was going on unrelated to his hearing difficulties. It became more and more obvious – to me – that Zip wasn’t developing in the same way that other kids were. I babysat my friend’s 18 month old who asked me to fill her water cup by thrusting her empty cup into my face and requested a on orange by pointing at the fruit bowl and demanding “apple!”.
I suddenly realised that Zip had never done anything like that. Zip hadn’t communicated like that at 18 months and still didn’t communicate that effectively at 3 years old. Oh he had a lot of nouns and would happily list all of the names, numbers and colours of the trains on Thomas the Tank Engine. But he didn’t… ask for things. Ever?
His teachers at daycare seemed confused when I asked about how he was at daycare. “He’s doing absolutely great!” they told me. “He’s such a clever little guy. His reading just blows us all away! And he absolutely loves the other kids – he knows everyones names and goes around and greets everyone. He’s a little reserved sometimes but if we play a game where we identify shapes or colours he’s out there hollering louder than anyone else!”
It took me a while to find a new paediatrician because I wanted to find someone who wouldn’t base their assessment of my son on how well I was coping with him.
It was August 2019. The earliest I could get an appointment was for January.
Zip’s hearing was on the borderline of normal but it was clear that his glue ear wasn’t clearing up on its own. Zip had another set of grommets put in.
Again his language exploded but as his language skills increased it became obvious that Zip wasn’t picking grammar up in a typical way. I told my speech therapist it was like he was just… memorising sentences which he associated with certain contexts and then splicing them together to create some variations.
By the time of our Paediatrician appointment in January 2020 I was well convinced that Zip was neurodiverse. I was armed with a timeline of Zip’s development, an experienced autistic parent and parent of autistics as an ally and samples of his sentence structure.
Zip has had allied health input in the last 2 years, including OT and speech therapy. Other than sensory processing difficulties (auditory in particular), it has also been identified that Zip displays difficulties in self-care, lacking in age appropriate play skills, social emotional competency and awareness, as well as his deficits in both receptive and expressive communicative skills both in verbal and non-verbal domains. He also was brought to see Paediatrician in the past for above concerns but Paediatric assessment at that time did not fulfil the criteria of ASD.
Zip has difficulty maintaining focus on set tasks and it takes huge effort for people around him to engage him in conversation or to follow any instructions, with obvious lack of eye contact. This was particularly evident when he was pre-occupied by mobile devices or things that he loved and is fixated upon (e.g. Thomas the trains, numbers and alphabets). His speech was also noted to still be unclear with some language errors, as well as speaking in 3rd person. Zip has limited awareness of personal spaces and can be quite emotionally volatile in the ways he demands things (meltdown or hits mum if mum doesn’t fulfil his needs / request e.g. when he wanted to put toy car into his mum’s mouth repeatedly).
To my relief the new paediatrician agreed that it would be worth doing an Autism assessment. When I went to pay the receptionist told me they’d had a cancellation with the psychologist and we were offered an appointment with the psychologist the same week for the ADOS-2 assessment.
At this point my biggest worry was that Zip somehow wouldn’t meet the diagnosis criteria for an official diagnosis.
Zip responded to the examiner’s questions, sometimes appropriately and sometimes directly repeating the examiner’s words. Zip was not able to have a conversation with the examiner. He was not able to tell a story from a book, taking turns with the examiner. He started some social interactions of his own, for example to talk about toys he was interested in or to ask for help with a toy.
Zip used stereotyped phrases repetitively, with consistent intonation. He was not observed to engage in any unusual sensory interests or behaviours. Zip was not observed to use any hand/finger or other complex mannerisms that are commonly associated with ASD. He was not observed to engage in any highly repetitive behaviours, or show excessive interests.
I need not have worried. The results were clear and at our next paediatrician appointment we were presented with a succinct but important letter. Zip meets the Diagnosis Criteria for ASD Level-2.
I wrote the bulk of this post in January and February this year. I planned to finish it off with a summary of how we were learning about his needs and working to accommodate him. But COVID-19 isolation has meant we haven’t been able to proceed with many of our appointments.
So life is, if anything, far more difficult post-diagnosis than it was before. Zip doesn’t do much independently and struggles to entertain or occupy himself for even a few minutes without sustained and devoted attention.
But we’re all muddling along together. He’s not like other kids. And Autism is such a collection of spectrums that he’s not very much like other Autistic kids either.
But I’m learning as much as I can from other Autistic people – from Autistic adults – and especially from him. Because he is fully and absolutely himself and I never want to push or pull him away from that.
A lot has happened since my last post. Not a lot has changed for me personally but… gosh. GOSH.
I don’t know if “habits” the way people talk about them really exist. Because people also say things like “… like brushing your teeth!” about habits and I don’t think they mean “something you remember you were supposed to do after you’re already in bed”.
So I don’t think your STUFF list is a thing that will “build” over time. The momentum that builds from having a novel system and a completed list is very fleeting. Then it’s just another list which will be as boring and ugly and scary as any other of the thousands of lists you’ve made.
And you know what? That’s okay. Because I want you to make a list that you can keep using even when that happens. That’s one of the times that you need to change gears.
Now there are two things you can do. You can change gears and/or you can change gears. Is that confusing? Probably. But when you do one it’s a good time to think about doing the other as well so it really doesn’t matter that they’re called the same thing.
You move from Usual to Treading Water. Or from Treading Water to Survival. Or the other way around. Something comes up. You need to work from home? Things are hard but you need to keep the lights on. So you look at your gears and you change your expectations of yourself.
But how long ago did you put this list together? Before the global pandemic? Maybe it’s not… exactly right. What does your ‘Survival’ gear look like now that… you might have to live there for a while? What changes in your ‘Treading Water’ gear if … *gestures defeatedly*… yeah.
Whenever you change gears you need to take the opportunity to change gears. If you need to! And if you’re going to be here a while… that’s your Treading Water. Because that’s what treading water is for. And if this is your new normal? Well… that’s your usual gear.
Maybe you thought you were changing gears from Usual to Survival. But… maybe you’re actually changing your Survival gear into your Usual gear.
What’s “usual” for you now? It’s okay if that used to be your Survival or Treading Water.
If you’re not meeting your expectations of yourself it’s okay to lower them. I promise. If it’s all too hard and you’re not facing your obligations let alone meeting them? If what you think you should be doing is making you feel bad and you’re still not doing it? You don’t get points for that. That doesn’t make you better than the version of yourself that expects almost nothing – but actually does something.
So right now in this time of foreboding and social isolation… what are you actually able to do? What’s realistic for you? What’s realistic in an ongoing way?
Change your gears. Create a new page in your bullet journal for your new STUFF list. Or re-tag your tasks in whatever app you like best for managing your day-to-day routines and habits.
Make a version of your list that you’ll actually look at – and one that won’t make you feel bad about yourself when you do.
In December last year I got into a discussion on twitter about labels and specifically about whether labelling oneself as neurodivergent, (or as autistic, ADHD etc) was positive or negative.
In summary, and I apologise if I’ve misunderstood the point of view, labels made this person uncomfortable as to them they were pathologising the individual instead of the environment.
If a bunch of flowers in your garden bed withered and died, would you wonder what is wrong with the flowers? Or would you wonder if maybe they are not suitable for their growing conditions? Or maybe the soil itself is unhealthy?
I responded in a tweet thread that you can read here if you like but you don’t need to because I’m going to write it in long-form here.
I think that discovering that you’re neurodivergent can be like finding out that your garden is in a completely different climate than other people you know.
Everyone’s garden is different. Even within the same neighbourhood you might have different soil and drainage conditions. And you can’t just follow textbook watering advice and planting schedules because everything needs to be adapted to your personal conditions…
But the climate that you’re gardening in can make some advice and recommendations completely irrelevant. Some advice and recommendations you’ll need to ignore rather than adapt. Knowing your climate helps you to find relevant help when something goes wrong.
For people with trauma backgrounds we might never have had a flourishing garden. Our parents didn’t teach us how to weed or prune our brain-plants. So we can be very very reliant on teachers, friends and therapists to help us care for our minds and our brains.
So maybe people keep telling you “you need to plant your seeds inside two weeks before the last frost date and then harden your seedlings before transplanting into their final position!”
But nobody can explain what “frost” is. And when you ask people when the last frost date is likely to be some people say February or March. Or April. They encourage you to work that out for yourself because it varies from person to person! Because it depends on exactly who you are and exactly what you want to plant…
But if you live in, say, Brisbane… there is no frost. January and February are the hottest months of the year. You need a completely different set of instructions for what to plant and when.
In my real life gardening adventures I need to convert farenheit temperatures to celcius. I need to know that southern hemisphere seasons are reversed compared with the northern hemisphere and I need to know that it’s hot and humid here.
ADHD and Autism aren’t withered plants. They’re not failing gardens. They’re different climates and soil types. Following neurotypical planting dates and watering schedules is going to lead to a failing garden: because we need to follow different advice to help our gardens thrive.
And by classifying those differences we can articulate them and find relevant help when our gardens aren’t doing well. Because sometimes different problems sound similar. Sometimes different plants have the same name in different areas.
Knowing your climate is important because maybe when you mention your watering schedule other people are horrified. And you’re filled with self-doubt. Are you doing it completely wrong?
But being able to know or say “oh! well it almost never rains here at this time of year and it’s very hot so I actually do need to water my cucumber plants twice a day or they start to wilt” is a huge relief. Or to be able to say “well I mostly plant succulents and cactus so they don’t need frequent water!”.
Because it’s all very well for someone to tell you “just find what works for you and keep doing it!!” but when what you’re doing isn’t working you need to be able to find advice that might be helpful and not harmful. And if you say “the leaves of my plants are all droopy and floppy” people will ask “when did you last water them?” and you will say “um… like a week ago but…” and people will say “you need to water them more often!!”. But if it’s the wet season and it’s been raining every day for a week maybe your plants have root-rot and need drying out. “just water your plants!” is the wrong advice for you even though your problem looks similar to one that could be solved that way.
And when you have a label for your climate – when you have a way to say “it’s raining literally ALL THE TIME right now” you can take that into account when talking about how much to water your garden.
If you don’t know how much climates can differ you’re stuck doing trial and error against and onslaught of advice, recommendations and “common sense” that somehow just keeps making everything worse.
And you have some simple words to add to your search terms which gives you information that’s more easily adaptable to your unique garden which isn’t exactly like anyone else’s garden… but is different from typicalgardens – and similar to some other people’s gardens – in some very specific ways.