Fellow ‘systems junkie’ Kate has a theme for Thankful Thursday this week, and I thought it might be fun to join in.
Has there been an event or situation in your life that you felt was impossible? Or a time that really had you at your lowest ebb? Looking back at that now, what about those challenges do you feel thankful for?
Answer: FOR SURE. But first, let me tell you a little story…
Once upon about a thousand years ago, I remember tagging along as a parent helper on a kindy excursion to the Adelaide Botanic Gardens. At 4, Eldest was roughly a year into his autism diagnosis and even though we had some victories, he still needed a lot of help with a lot of different things. Excursions were always one of them – if I wanted him to go, I usually had to go myself.
It was not a good day.
Part of the trip included a walk through the Bicentennial Conservatory and a picnic in the Gardens afterward. Eldest had been progressing toward full blown meltdown for hours, but I had been engaging all my best ‘bribe the child’ moves – special treats, favourite toys, you name it – anything I could think of to keep him happy until we could get back on the bus and head home again. Nothing was working for longer than ten minutes at a time, and I was about to lose my mind. When Eldest had another one of his ‘autism moments’ as we stepped out of the Conservatory, I told the kindy teacher I would stay behind with him, calm him down, and meet up with the group at the picnic spot.
When we were alone, I took a deep breath. I tried to hold on to the last shreds of energy and sanity I had left, but then Eldest went from merely testing the limits of an exhausted mother to true apocalyptic levels of behaviour. And I don’t mean mildly-frustrated wails either, I mean brown-note level demon shrieks, the type of sobs that render a child hardly able to breathe, with snot flying out of nostrils and a t-shirt wetter than those worn by the over-enthusiastic lunchtime joggers who were circling us in the Gardens. It was never-ending, and it was BAD.
To this day, I’ve never seen anything like it.
Of course, I burst into tears and couldn’t stop. For twelve months I’d just been getting on with the job at hand, getting the kids to kindy, childcare, doctors’ appointments and speech group. You know, normal stuff. Except it wasn’t normal, and I wasn’t paying attention to my emotional state at all. When Eldest lost his marbles at the base of the fountain outside of the Bicentennial Conservatory that day, I had nothing left to give; he’d taken it all.
I had no idea what else I was going to do. All I could see ahead of me on this ‘autism road’ was heartache and emotional robbery.
That was my lowest parenting moment.
We eventually rejoined the group (I might have worked myself into sob-vomiting into a rubbish bin on the way – true story) and made it home, although for the life of me I cannot remember what the rest of the day was like.
That was nine years ago.
Eldest’s behaviour back then wasn’t the last time we saw a meltdown, not by a long shot. But it has always been my defining memory of that horrible, painful stretch in our lives right after his autism diagnosis when we really didn’t know which end was up, how his future might unfold, what his abilities would be, whether he would ever toilet train (he did eventually, but not until he was 6), how bad his communication deficits might be…the list goes on. It’s not too much of a stretch to say it was a pretty uninspiring time.
But I never broke down again the way that I did near the fountain.
It wasn’t because I didn’t feel emotional, because that would be a lie. My close friends will tell you even just the past two months preparing for Eldest to start high school (in a mainstream setting for the first time) has been, quite frankly, rather a shit time for us. Just tonight we’ve had a very heated discussion with him over the importance of doing homework, and it hasn’t been the first debate of the day, either.
But when he was younger? I’ve written about it before, but essentially, I stopped looking at the autism first, and started seeing him.
He’s an amazing kid. He has his quirks, but then so did the kid we met in his kindy year who ate socks (another true story). I have quirks – I’m mildly OCD about checking the oven and stove knobs before I go to bed. His father has quirks too – he can’t leave the two types of big spoons we use (dessert and soup) in the same section in the cutlery drawer – he has to separate them. Everyone has quirks. Eldest is amazing because of his differences but it’s more than that.
A mother might get a little teary-eyed at their kid’s first word but for the mother of a previously non-verbal child mastering PECS, a spoken word is never just a word. A kid sounding out their beginner reader is a gorgeous sight, but bearing witness to the cogs turning in the brain of a kid with communication difficulties, to see the light switch being literally turned on before your eyes is a miracle. Milestones are never just milestones. Achievements are never just boxes ticked in a Blue Book. It’s seeing for the first time that the tide can change. It’s hope.
We have been rewarded a hundred-fold for our earlier challenges with Eldest. We have a funny, bright, tall, handsome, talking (oh my gosh, the talking, it never stops!) happy young man. And at 13 and taller than me, you really can’t call him anything else. He has settled in pretty well in high school with only a few minor hiccups (I could do without the hormonal attitude, mind you. The sass is killing me. By far the worst part of parenting a teen.)
That little boy with snot flying in all directions? He had some growing up to do first, but he’s going to kick some serious butt in the coming years 
I’m hanging out with Kate for Thankful Thursday
What a beautiful post. I have been there too, that mother crying in the park… well, not the EXACT same park, but you get the idea! We are closer to the start of our journey, so it’s comforting to hear how far your boy has come and what a lovely young man it sounds like he is well on his way to becoming. Well done to you!
Renee | About a Bugg recently posted…Sick of fighting with your kids to wear clothes? This is the post for you!
Hi Renee -
Life is never dull, that’s for sure. People sometimes ask me how we managed those first couple of years – TBA was also in the middle of a MAJOR career shift and living away during the week while he trained for 6mo, so I was essentially sole-parenting – and the reality of it is that I just. don’t. know. But I will say this – it gets easier. You don’t wake up with that gut-wrenching feeling, for one. Knowledge and experience are wonderful things!
What a fantastic and inspiring post! I am also just starting on my journey with my son who has childhood apraxia of speech….sometimes he loses the plot because he can’t communicate and…sometimes I wish I could just have a normal boy..like all the other mums out there!!…..With the help of some amazing bloggers, I am really starting to appreciate him for the funny little fella he is, rather than his apraxia…. Thank you for your inspiration and showing there is light through the tunnel!!
Nicole (SportyMummy) recently posted…Change Can Be A Good Thing
Howdy Nicole -
Not long after we were first diagnosed, I did what most ‘new autie mums’ do and drowned myself in everything I could read about autism spectrum disorders and their associated conditions. Firstly, not such a brilliant idea, LOL, but there was one article I came across that I found absolutely brilliant – and I think any parent of a special needs child, autism or not, can extrapolate the meaning in this:
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Autism is not an appendage
Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
I wish my child did not have autism,
what they’re really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
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I really credit that article with turning the tide for me from ‘OMG why me, my life is over, why can’t he just be like the other kids?’ to ‘Ohhhhhh! I get it now!’ and it stuck every since. I’ve shared this link at least a dozen times online before, but it’s brilliant. Written by an autistic man, Jim Sinclair, and you can read the article in it’s entirely here – http://www.autreat.com/dont_mourn.html. That one paragraph though, wow. Still gets me
Amazing post Karen, thank you so much for sharing it. My little mate is stim city at the moment with some of those huge meltdowns thrown in for good measure. It is HARD. Your post reminds me that things will keep changing… this stage isn’t forever and he’s the same beautiful boy he always has been.
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xox
kate says stuff recently posted…Thankful Thursday: From Stress to Strength
Kate, I was knee-deep in a writing course when we were first diagnosed so of course I poured my heart out onto paper (this was The Time Before The Blog, lol)….but I distinctly remember driving home from our second (confirmation of diagnosis) assessment with the thought that ‘This changes nothing – he is the same child, fancy diagnosis or not. I don’t love him less any more than I love the other two more for being ‘normal’. And that’s really what it boils down to. A diagnosis – of anything – doesn’t change the child, but it’s like tossing the parents a road map of what’s ahead. You’re still going to get to where you’re going, but you might have to modify the journey a bit
For the record, Eldest stimmed quite extensively pretty much until about the age of nine or ten, and then it gradually faded. He used to do it when he was excited, so apart from the weird looks (people can be a*seholes, basically) in public, we treated it as it was – a way to self-calm. I am pretty sure his teacher worked with him to minimise the ‘obviousness’ of it because I remember thinking, hmm, the arms aren’t above his head with hands flapping every which way anymore, they’re down by his body and it’s mostly just his fingers…he still does it now on occasion, but it’s nothing like it was when he was younger. I think maybe as he got older and began understanding more – we told him about the autism and what it meant around the age of 11 – he began to be able to control it himself.
The meltdowns, too, lessened as he got older. The Snot Explosive ones don’t happen now, but being a teenager he will argue that he’s right until he’s blue in the face, something about stubborn-mindedness in auties…it’s one way (theirs) or the highway, LOL. So they do grow out of some of the more obvious behaviours, or learn to regulate them themselves. Eldest stimmed when he was happy, so for a kid who otherwise had communication difficulties, it was a weird way for us to know if he was interested in something or not!
Karen recently posted…Ebb & Flow, Autism-Style
Thanks for this Karen. It’s always good to see how other people live and the struggles they face. I can completely understand that you burst into tears at that moment; I think most of us would. I’m glad things have improved for you all since then.
Oh and the stove thing? I do that too!
It’s TOTALLY, unequivocally normal, isn’t it Jess??!! LOL.
Thank you for sharing this with us.
Linking in through Thankful Thursday – love, hugs and positive energy.
Me
ohmygosh this was absolutely incredible… you write so beautifully. thankful for thankful thursday finding this blog – new follower here!
Lyndal recently posted…Holiday, Celebration
Awww, thanks Lyndal!