I read a story once, it may have been fiction or based on a true story. The story was about a boy diagnosed as intellectually disabled, with severe behavioural issues. When this boy was eight or ten years old it was discovered that he was profoundly deaf. Far from being intellectually disabled he was gifted enough that he’d taught himself to speak and lip read well enough that nobody had suspected that he couldn’t hear.
And as for the boy? “I just thought that everyone else was better at lip reading than I was.”
I think about this story a lot.
In 2012 I moved to Sydney from Melbourne. My husband is a naval officer, I worked from home. So I put a fair bit of effort into socialising myself. I joined an acting class.
I love small talk. I love meeting people. Put me in a room full of people who don’t know each other and don’t know what they’re doing and I am absolutely in my element. I thrive. I make people feel welcome and comfortable. I make people laugh and relax. And the next week people remember me and smile when they see me.
And as each week goes by and everyone else becomes more comfortable and secure… I feel more unsure and awkward.
A month later the same people will all be friends with each other. But not with me. And I overhear them talking about a nightclub they’d been to together and I wonder why nobody invited me.
But when I joined that acting class I noticed something. I noticed that they remembered things about each other and they swapped phone numbers and texted and met up with each other outside of class and went to bars together.
And I knew that I was more than capable of doing all of those things. I couldif I wanted to. But also I really didn’t want to. I didn’t actually care about any of those people enough to want to think about them outside of class. I definitely didn’t want to go to a bar or a nightclub.
I can’t help but think that other people are a lot better at lip reading than I am.
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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.
“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.