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.... sorry about the focus, excitement got the better of technique ...
Algy, thank you for the reminder to celebrate the small things.
Life with Tim the Cabin Boy is challenging and it’s easy to be overwhelmed by the galaxy of life-sapping misdemeanours and accidents that require more or less constant fix-ups and time-stealing restitution.
Tim is 12 and in year 7. Last Friday after 8 weeks straight with us, he agreed to go and spend the weekend with his Dad. We were going to be late home from different jobs and so he was to let himself out and walk there – again by himself (about 500 metres).
FM discovered the most amazing thing when we got home. On her desk were a couple of geraniums. Tim had obviously borrowed them from a neighbour on the way home – AND – worked out that they needed to be in water – AND – decided that one of the bike bottles was the go. After seeing FM and I bring home flowers every week for the last four years, he pieced it together that giving flowers was an act of love. Major breakthrough.
Before anyone gets all soppy about this wondrous event, the same day he lost his house key (because – against the agreed approach of locking the door and putting the key in a special place, he changed his mind and took it with him – hundreds of dollars now must be spent spent on new locks) and as an aside, he did not bring home his school diary – meaning that he couldn’t do any homework on the weekend. It’s lost. Gone for good. Including, one suspects the demerit he got for not doing his homework and for being constantly late for classes (after we’ve dropped him off at school on time, of course). But at least we got back the sports gear that he left at the bus stop the week before (but not the previous three times this year).
99 fairy steps forward and 98 fairy steps backwards. But to be fair, he means well.
And the flowers look good, don’t you think ?
Window Dresser's Arms, Pig & Whistle 
Emm, the flowers are great and the bike drink bottle makes a great vase. I speak with someone else I know whose daughter is battling cronic fatigue and has for around 18 months getting school for 3 mornings a week is celebrated there.
The little steps are building blocks I find and sometimes as you say “99 fairy steps forward and 98 fairy steps backwards.” at least its one step forward.
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Gee Emmjay, I can’t even say yo. Now not because I didn’t like your story but a very strong story you tell. My kids grew up like a breeze. Lucky me. As a community nurse though I do get to see lots of things visiting people in their homes.
Part of my work involves teaching carers to do PEG feeds for disabled children, children with both physical and mental injury. It’s very levelling. When I leave I think to myself “Hung you are a lucky bastard”. The lives of these and others that are my clients is at best difficult, usually involves chronic pain and makes day to day tasks often unachievable.
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Hung, on reflection I had half a breeze with my two Emmlets. And I’m very pleased that both seem to be going OK at present.
Tim is not in any way at the really difficult end of the spectrum, but he was / is quite a hand full for a single parent learning the ropes. The older he gets the clearer it is that he’s a special kid – but he himself is also able to develop coping strategies and it’s excellent when we work as a team. Sometimes the oppositional and defiant behaviour pushes all my buttons and it’s best if I take a break – or put another way, FM and I work best as a tag team with only one copping it at any one time when the chips are down.
In the last five years, I’ve gone from a zero knowledge of special needs to become reasonably well-informed – and then I feel ashamed that I was so ignorant for most of my life of how hard each and every day can be for carers.
These are the true saints for me – not merely Papal marketing exercises, but real people facing the music day after day after day – for their whole lives. Bless all the carers, Hung. Each and every one.
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Thank you Michael, beautifully said.
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Emmjay, I can empathise.
My middle son, now twenty, is autistic, but, I gather, not as severely affected as young Tim. He was quite frustrating. Couldn’t look anyone in the eye, had no empathy, at all, even when he saw something happening to someone else, that had previously happened to him. You know the story.
Anyway, now he has a job, as an apprentice chef. He’s fortunate that he works for a local, family owned hotel, that has a philosophy of employing a certain number of young people with a range of disabilities, mainly autism. He drives a car and has started going to the gym. Frustrating for me, as he will never enjoy the pleasure of reading a book, or investigating something for interest’s sake, but, he’s already way ahead of where we thought he’d be at this age.
He ha started to engage with other humans. This is fairly recent, and, I don’t know if it’s a learned behaviour. or if something has changed in his brain. he now shakes hands and looks people in the eye. he actually asks how people are going, or what they’ve been doing. So, I guess I’m trying to say that things will improve, and that a little bunch of flowers, beautifully presented in a bidon, may be the first step.
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Big M, if I may be flippant about such a serious issue; when the gods were divvying up empathy, they accidentally gave you too much, and as each family have their allocated lot, there was not enough left for the son.
How is that for a scientific explanation!
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Kind of you to say, Helvi. I think having a very small stroke a couple of years back softened my brain!
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Encouraging words, Big. Many thanks !
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Big M, Your sounds like he’s improving? Fantastic mate, I’m pleased for you all. I mean we played cricket together on Missen for the Male Nurses United, hahaha
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That’s a very fine bunch of flowers.
I’m more soppy about him losing his key.
If he can change his mind and make a plan that seems better to him, rather than just forget, that’s pretty damned good I reckon.
It can’t be helped that he forgets things. He had a pretty complex day, and then added to it with the flower thing. I’m in great admiration. Most of the time I don’t get around to the flowers, just chastising myself for the key.
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It’s a nice fuzzy picture too. Nothing like a fuzzy picture.
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I’d have thought carefully about priorities, lost the homework notebook too.
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…..you might even find the key somewhere around the neighbour’s flower garden? Chances are he was looking after it very carefully the closer he got to home.
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You might also find it with the homework notebook. Then you would feel a little chastened.
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Imagine installing a software program for your computer.This software doesn’t actually go into your main system. It’s sitting next to it. Somehow you have to make it connect up. There will be succesful connections. There will be times when either the software program or the hard drive forgets about the other one. In all the excitement of seeing a flower and knowing what to do with it.
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Somehow seeing the flower and knowing what to do with it is not a function of either the hard drive or the software program. Oh, you think to yourself. There must be something else going on in that computer. Some other part I haven’t really seen before. I wonder what else it does?
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Oh. Artificial Intelligence. I could never get my head around it.
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A bunch of crusty old Engineers crying out to find their Sensitive side. Hah.
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Perhaps you could reward him with a bag full of walnuts and a hammer.
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Interesting idea. Might work if I also provide a brick with holes in which to sit the walnut. And a pair of eye-protection goggles !
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He’ll find a brick or something else.
If you give him goggles he’ll probably put the on top of his head and then poke his eye out.
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He’s a kid, before he’s autistic. Kids do dumb things. Some really smart kids are nothing but clumsy breakers-of-everything.
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It would be helpful for him to understand that once you work out how to open something, it’s very pleasurable.
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But Atomou is right. He’ll still be losing those keys when he’s 30.
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Oh.
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Well it’s pretty intelligent to figure out that flowers might be equivalent to key?
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Kids. So smart.
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The flowers look excellent, emmjay and one cannot help but get all soppy about them because they emerged from the cabin boy’s most valuable cabin: his heart. Lots of head stuff there, too but it’s the heart that Tim is displaying; it’s the heart he’s inviting FM to enter. The cabin in his head is still an alien ground for him yet. He’ll need more time to get to know what’s inside it, more time to know what he can do in there but the heart is his inner sanctum and he’s invited FM in.
It’s only one, very tine, fairy step forward but it’s a bloody beauty. Geraniums from the heart.
Second daughter went to the races with girlfriend on the weekend, both got tipsy and she ended up forgetting her bag in the taxi. Lost everything. A purse full of cards, car keys (electronic, so it cost her around $500 to replace them) resulting in a complete paralysis. Couldn’t go to work, had to call cab companies… total breakdown of faith in humanity. Still no call from anyone to say they found it. And she’s a very bright, middle-management woman of 31 years.
But her heart is the most luxurious heaven in the universe.
Enjoy the heart, Em. The head can get quite fucked sometimes… Alright, often.
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As always. An interesting and thoughtful response, ‘Mou
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I have a delightful photo of my middle-aged son when he was little more than three standing with in his hand a rinsed plastic shampoo bottle with water in it and the weedy flowers he gathered at the dump earlier on for me. A Saturday morning so far away. He has suffered all sorts of mental distress in his mid-teens and adult life. Diagnosed at 15 as having schizophrenia. The flowers in our plastic bottles filled with water (life giving water!) by children!
The little boy growing up with Aspergers next door to me waited near my front drive to tell me about his research into his favoured topic.
A teenage boy with autism who I met when he was visiting the home with his mother of my friend who is just deceased followed me around talking, which sounded like shouting. He was fixated on his discoveries learning the computer. Although nothing he said seemed factual but stuck, wooden.
This lad is grown to a large size and I unavoidably think of the beauty of the grown panda bear when I see him. He still clearly demonstrates autism, but his loud manner has tempered. At my friend’s service last week, when the presiding priest asked the congregation that each turn to the person next to them to offer friendship or our acknowledgement, I realised the same young man was my only neighbour. I felt immediate doubt what might transpire. I turned to him, but spontaeously uttered his name. He reached out for me with his arms outspread on my enquiry of him by body language if he was willing to hug. I burst into weeping and cried freely while he held onto me so tightly, and for so long I was envelopped in his big arms and felt his heart consoling me. I wept even more that this was so meaningful. When I considered I should offer him a cue for us to separate I moved, I thought imperceptibly, and he parted from me, regardless a little hesitant what was perhaps expected, but immediately confident and nodded when I said thank you. His face remained impassive.
I only tell the stories to illustrate human emotion is not understood very well. I have learned this.
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‘Shoe, I have to admit I got a bit misty with your story. Sometimes I feel very guilty about my frustrations with Tim.
I get exhausted at having to double or triple think everything. Planning so that disasters are all headed off becomes totally exhausting when, despite one’s best efforts, things just go all to shit. Not possible to foresee everything. And it makes me sensitive to how complex the ordinary world is when one does not have the benefit of a full kit of sensory awareness. Simple things like…. no eye contact mean that even if the child was aware that facial expressions convey meaning…… that by looking at someone you can tell whether they are happy, angry or sad ….. come to nothing if one habitually does not look. Then life seems always random and highly risky – because it IS.
And just when I feel I’m going to fall apart making meaning at both ends of the conversation, stuff like your story – and Tim’s flowers come up – and bring many tears – sometimes joyous – and sometimes not.
I’m sure you’re right. Not well understood at all. But appreciated none-the-less.
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Dear Emmjay, we are real products of our society and culture, gosh, as well as its resources: I do not have the physical and emotional resources and I cannot cope all day every day with the limitations of non-responsive companions. I have been surrounded by those enough to know specialist services are needed to ease the situation for carers.
Emmjay, a really scary aspect is so many parents are carers of eventually adult children for whom little is provided in services and my view is this is our social and common responsibility.
Is not it hard to say these things and demonstrate them! Wow, o, wow! O yes, we weep. And we so most frequently enjoin with each other to find our hope and our laughter. Pheww! 🙂
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