A great big bottle of whine

I’m wallowing today. C’mon in and join me in my mudbath of self-pity! Climb in, it’s lovely and warm in here, although you might find it a bit cloying after a while…

It’s looking like my ‘late developer’, ‘young for his years’ son has Asperger’s after all. To be fair, it’s not that much of a surprise. It’s something my sister first flagged up when he was 18 months old. (Oh yeah? What does she know? Well, unfortunately, she’s a speech therapist. Specialising in children with autism spectrum disorders. I know, I know – why couldn’t she just have worked in a pie shop?)

I know it’s self-indulgent to moan, because at the moment it’s fairly subtle, almost invisible to the outside world. What seven-year-old boy doesn’t bang on about Star Wars weaponry, hate writing, not know when to stop when play-fighting with an adult, complain his socks ‘hurt’, and have to be told 75 times to put his shoes on in the morning? It’s mostly apparent in the classroom; he stares blankly when the teacher is talking, as if the wind is whistling through his ears, and misses the simplest instructions. He reads like an adult but can barely put one sentence down on paper.

‘It’s mild,’ everyone says, and I know they’re looking to reassure me, and they’re quite right. He’s a ‘lil’ bit Aspie’, in the way you can be ‘a lil’ bit Country.’ Believe me, I am grateful for that. But ­– whisper it – because this is all relatively new, I’m not quite in the zone yet of ‘comparing’ him to other kids on the spectrum; I’m still clinging to ‘comparing’ him other ‘neurotypical’ children. (Parents who are struggling with children with severe ASD and other disorders, I will email you my address so you can come round and punch me really hard in the mouth.)

I guess it puts into context why I never felt that he ‘needed’ me as a baby. Why he used to sit for hours as a toddler spinning the wheels on his upturned pushchair, and was late to talk. Why he was 18 months old before he kissed me. Why I’ve often found him, to be frank, a bit of a struggle. (It also puts into context the behaviour of a few close relatives and the off-the-wall, inappropriate things they come out with. (‘How was the funeral?’ ‘Too hot.’))

But yes, it is subtle. So subtle that even I was shocked when he was doing the verbal tests with his speech therapist.

‘Tell me what you can about a house.’

‘It has four brick walls. It’s a cube shape, with a prism for a roof – the roof can be made of wood, or metal, or other materials…’

‘Tell me what you can about an orange.’

‘It’s spherical. It can be hard, or soft. It’s rough on the outside…’

No, son, it’s a fruit! A sodding fruit! He managed to explain 20 words without giving a single ‘big picture’ answer, or indeed a single emotional response or personal observation, like ‘I like oranges,’ ‘I live in a house.’

Being a glass-half-empty kind of person, I’ve already extrapolated into the future and had visions of him boring a girl into a coma with the exact specifications of the Bugatti Veyron. I’ve just got to do a mind-flip, now, and look at the many, many positives. He’s a lovely, polite boy, with beautiful grey-green eyes and a great sense of humour; he’s healthy, he’s happy and with a bit of ‘tweaking’ he’ll be just fine. Right, I’m going to climb out of the mudbath and have a refreshing cold shower. There’s still a bit of claggy self-pity clinging to me, so maybe I’ll get the pool boy to help. José! Hose me down!

DISCLAIMER: Just re-read my post and realised it would be horrifically insulting to any adult or teenager with ASD who happens to stumble across it. I’m leaving it ‘up here’ as it was an honest first reaction to all that has gone on, but I must learn to practise what I preach: I’m always telling friends that ASD is viewed very much as dyslexia was 20 years ago – as something to be collectively feared and marginalised. And that we need to try and have a better understanding and bring ASD into the mainstream. I am now going to get my cat o’nine tails and administer a sound self-thrashing. Think I’ll stick to sticking to blogging about biscuits from now on.

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48 Comments

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48 responses to “A great big bottle of whine

  1. I’m always excited when I see a new post from you pop up in my reader. I’ve just read this one and want to come over to wherever you are and give you a big big cuddle.

    I don’t know what you must be feeling: I can’t attempt to understand what must be going through your mind. But your fabulous personality still shines through, even when writing a post such as this. With you as his mum, your little lad is going to do just fine.

  2. notwavingbutironing

    Oh shucks, Trish, you are so kind and lovely (don’t think I haven’t seen your other many messages of support on other people’s sites). I am sure if there were hugs to be doled out, you would deliver a fine one! Although you might have to bend down, me being a short-arse and all. xx

  3. My child doesn’t have Aspergers, but believe me, I am nodding so hard along with what you are saying. ‘Mild’ doesn’t help when it was all fine before. I remember Eldest’s cerebral palsy diagnosis and though it might not be what is officially recommended, we got through those weeks in a fog of alcohol.

    Buy wine. And email me. I do whining well, too. I can take whatever you’ve got.

    • notwavingbutironing

      Oh, that’s so kind of you, Coffee Lady. I promise you this is a strictly one-off whinge – I just felt, for some unfathomable reason, like I had to get it down ‘on paper’, as they used to say in the olden days. There’s nothing stoic or stiff-upper lippish about me!
      I am a bloody lucky cow and it’s really nothing in the great scheme of things. The only thing about it that bothers me slightly is the lack of empathy thing – his sister ADORES him and she doesn’t get anything back. But hey, that’s brothers, right?

      • notwavingbutironing

        And sorry, I feel doubly whingey for crapping on given that the lovely eldest Latte has her own issues to deal with. Although it sounds like you are fantastically creative in circumventing them – am in awe of your reading programme! x

  4. I’ve been going through this for the past two years, but for me it was a bit of a relief to get a diagnosis, so that it wasn’t my crap parenting that was causing all his behavioural problems. Now he is at a new school, he skips out to the bus in the morning, he asks me about my day – and listens to the reply! Yes he still bores me with the latest details of whatever computer game he is playing…but you know there’s girls who like them too! I know it’s hard at first, but it will get better ((hugs))

    • notwavingbutironing

      That gives me a lot of hope, Blue Sky! I know what you mean about the path to diagnosis: I’ve wondered whether my son is a) deaf, b) dense, c) lazy, d) damaged by my crap parenting, e) damaged by the fact that I was only able to eat ready-salted crisps during my pregnancy… So yes, bit a relief mixed in there. And I’m sure there are girls who love Bugatti Veyrons! Thank you x.

  5. Lou

    Fantastic blog post, sorry to hear of boy’s diagnosis but he’s still the same gorgeous child. Plenty of room in this world for interesting people – Personally I loved his responses to the questioning. I’d have answered so boringly, predictably, he has a much more unique perspective.

    **

    Daft Giveaway over at mine if you are interested!

    • notwavingbutironing

      Thank you, Lou! Funnily enough, when I told my mother (she of the ‘hot’ funeral), she thought his responses were just the ticket. Hmmmm…..
      Will pop over forthwith to yours. Have been a bit preoccupied with the whole Asp. issue which has kept me away from the blogosphere for a while. Hopefully now we’re over the hump, I can pay regular house calls once again. xx

    • I’ll second that. (except give-away)

      🙂

    • sorry, not Mary, but Sarah from St Bloggie (she’s my mum). 🙂

  6. notwavingbutironing

    Thanks. Sarah. What a great idea your mum’s site is – God knows how she found the mental strength to keep a diary while camping. I shall go back later and give it a ‘proper’ read.
    And the give-away is a goodie – I won’t spoil it for you, go on over to Lou’s and see for yourself!

  7. Every one has to ‘let the fizz out of the bottle’ every now and then….write how they feel and then look back at their words……so don’t beat yourself up over that…and as Trish said, I can’t share how you feel but think that as a family you all sound fantastic…..have a ‘through the ether hug’….

    • notwavingbutironing

      Bless you, Libby. You can see why I don’t usually write about emotional stuff. Respect to bloggers like Deer Baby, who do it so well. I just tie myself in a knot. I’ve managed to talk about my lovely boy as if he’s a bloody robot!
      Thanks x

  8. Mwa

    Just found your blog, and it seems like fate. I have a sister with Aspergers, so I know it’s not easy to deal with as a mother or as a family.

    Please don’t beat yourself up about seeing the problems as well as all the positive sides of your son. While you’re right that he should be accepted just the way he is, it’s still a lot for you to take in right now. I hope it all works out for both of you.

    • notwavingbutironing

      Fate indeed – you are a good fairy sent to stop me administering a second self-thrashing. Shame, I kind of enjoyed the first one, in a strictly kinky way.
      But a big thank you anyway. x

  9. {hugs}

    Got quite a few aspie/undiagnosed-but-likely-to-be-on-spectrum quirky kids among the home educated kids I know.

    And yeah, there are times when they are a pain – like when one visits our house and decides to dismantle our trailer or wave the petrol strimmer at approching kids, or talk for hours on the details of a particular model of lawnmower. BUT i wouldn’t be without ’em. They are all different (as are we) and they all have their own quirky challenging behaviours (as do we all) and their own skills and talents (like us) and some will go on to do great things (like a few of us) and others may go on to do ordinary things (like the rest of us).

    Don’t suppose it helps, but what I’m trying to say is that a diagnosis doesn’t mean a child is condemned to a particular type of life, any more than any of the rest of us are. It may mean a more challenging time ahead for you guys, but you’ll work it out and take it one step at a time I’m sure.

    And for what it’s worth, my eldest used to do similar with wheels as a toddler – hours! He’s quirky too in his own way, but has grown into his skin the older he gets and wouldn’t have him any other way 😉

  10. notwavingbutironing

    VERY wise and comforting words, Big Mamma. Thank you. I guess a lot of my angst is schooling-related, now you come to mention it. My son’s at a lovely but quite competitive primary. But you’re so right – the fact that he isn’t Head Boy material doesn’t mean he won’t find his happy niche in life. God knows, I’m not exactly setting the world on fire myself.
    Feel better now; am gradually unwinding like a steel spring… x

  11. Hey babe – just like Big Mamma our ‘gang’ has a healthy smattering of kids with diagnoses of one kind or another. And I never knew about most of them until things pop up in conversations – they’re just kids doing kid-type things. The difference is their parents know when to leave a building or not come out at all based on just KNOWING them.

    I reckon half the adults I know would be diagnosed with something if they were ‘tested’ – but it wasn’t really done in our day unless you were Forrest Gump. Mr GPants is convinced that I am ‘special’ – and he’s not being romantic.

    But then he’s just a bastard who doesn’t appreciate proper folding.

    Whinge away – s’wot blogs are for. Way cheaper than therapy!

    • notwavingbutironing

      Yes, you’re so right! We’re all ‘special’ in our own way. I am a neurotic freak who leaps 10 feet in the air when the phone rings. I’m not going in to all the rest or we’d be here all day.
      And yes, it’s all about knowing when to leave the building. And I’ve got that down to a T.
      Thank you. xx

  12. annablagona

    Don’t feel guilty for how this has made you feel. Everyone wants the world to be perfect for their children, and their children to be perfect for the world. Tis only natural.

    When I worked in a little private school – oh, many moons ago now – I taught in one of my classes a girl with the same dianosis. The SEN dept, unused to being used, made a big song and dance about it, and warned me repeatedly about how she would find it especially hard in drama, that I wasn’t to ask to her to feel, to empathize, etc. I looked at her file and realised that the SEN dept had never, ever had to deal with a child on the spectrum before. I had, having worked in London for years, and the most dramatic was a boy who was speechless, lost in a world that nobody had entry to, who spent all of his lessons looking at his pen. He made me weep.

    I never once noticed she was different, other than the fact that she was notably more erudite than her peers and didn’t quite get all of my sarcasm. Your boy will be fine.

    I met a man in the playground a couple of weeks ago. That is a gloriously dodgy sentence. Anyway, his son is Autistic, and he talked at great length about the Son-Rise program, with which he is heavily involved. I know very little about it, but he raved and raved. Here’s the link: http://blog.autismtreatmentcenter.org/

    In the words of Maximus, Strength and Honour. x

    • notwavingbutironing

      Strength and Honour! Thank you, AB. You are one wise cat (ref to your blog; I haven’t come over all 1950s).
      Feel heaps better today. Mostly thanks to all the lovely messages from peeps like you and the fact that my boy got up this morning when asked, dressed himself when asked, brushed his teeth when asked… I think you’re right – he will be just fine. x

  13. All your other commenters have such words of wisdom and comfort. I don’t have anything to say, really, because I just can’t think what you’d want to hear, and I have no experience in this area. Can I just climb in the mudbath with you for a little while, and offer some mucky, sludgy, slimy, companionship?

    (Why does the spellcheck insist on sludgy and slimy? Surely it should be sludgey and slimey?)

    • notwavingbutironing

      Come on in, Iota! Admittedly, it’s a bit cold and clammy in here this morning, but I think we can take it. Company and kind words always welcome. Thank you. xx

  14. I had a thought – not always advisable I know – but if you needed other mums of kids with ASD creds with whom to sit in a mud bath, we have q a few in our gang – so if you ever fancied meeting up at some point with the heathen hordes, we’re often lurking in your area. Also, one of these aforementioned has set up a regular meet for an ASD gang – usually a runaround somewhere where the kids do whatever they do and the g-ups do the blabbering.

    It’s all out there somewhere……

    • notwavingbutironing

      Thanks, Madame. It’s out there, as you say, for me and the boy to discover. As Aladdin said to Princess Jasmine, it’s a whole new world. Aladdin also said he would ‘take [her] wonder by wonder, over, sideways and under’, which I’m sure caused Walt Disney to spin in his grave. Let me know when you’re next lurking in the Wells. xx

  15. I’m not going to offer commiserations for your son’s diagosis, but a hug for the way you feel.
    My boy (now 11) was diagnosed with AS when he was about five. I try very very hard to embrace the differences and understand that his way is just different – and in some ways better.
    And as something in the way of light relief I offer my blog post about the first time I tried to explain my son’s condition to him. http://bundance.blogspot.com/2007/09/ass-burger.html

    • notwavingbutironing

      Ass burger – love it! (Love the blog post, I mean, not a burger made out of ass. Although I don’t know, it might be tasty). Your boy sounds lovely! x

  16. Sounds like your boy has many good qualities and useful skills despite his diagnosis: I’m sure you will come to look on the bright side, it’ll just take some getting used to, – and I realise how poor ‘just’ is in this context. Like your other commentators I’m sending a hug through the ether.

    • notwavingbutironing

      Thank you so much Hausfrau. I feel very spoilt and pampered by so many kind words coming my way. Not deserved, given that my post seems to imply that my boy is somehow less of a person for having Asperger’s. He isn’t; he just sees things differently, and as Madame Smoking Gun says, we’re all ‘special’ in our own way. x

  17. I don’t know about anybody else but I was nodding along with your son’s responses to the queries ‘orange?’ I’d NEVER have used the word ‘fruit’ and I always use 20 words where a couple would suffice… Was always told I was ‘trying to be difficult’ – funny how parents’ attitudes have changed over the generations, isn’t it? Bless you both, I think it’s a great gift to be able to see things from a different perspective.

    • notwavingbutironing

      ‘Trying to be difficult’ – as opposed to ‘having a wonderful way with words’. A fine example of 1980s parenting.
      Am enjoying your ‘Creature crushes’ over at yours, by the way. What a great idea. Thomas O’Malley definitely had something…

      • thanks – glad you can appreciate the TO’M as well – should’ve left a nice ‘Aslan’ shaped space specially for the feline king of creatures, now I think about it.

  18. skippedydoodah

    Hey, you know how lucky your son is to have you as a mother, right? If there’s one thing autistic children need, it’s someone with a damn good sense of humour.

    My brother in law has Aspergers, and not only is he an awesomely wonderful person, you can see the reflection in his family what a hugely positive impact his Aspergers has had on everyone who loves him. His parents and siblings (my husband included) are such loyal, insightful, caring, patient, sensitive people, as is my bro in law.

    In the nearly 9 years I’ve been with my husband and part of their family, I’ve seen my BIL change, improve, adapt, grow and constantly surprise everyone. Yes, there are shitty times and levels of boredom you could never even imagine, but it makes you a better person for just knowing them.

    And the future? He has a lovely fiance, his own place, a steady job and a whole bunch of friends. It’s not a sentence, it’s just a different route to life.

    I think also once you’ve known someone on the Autistic spectrum, you begin to see it in so many other people, ‘normal’ people, in yourself. Who’s to say we’re not all on that spectrum in some way?

    Hang in there.

  19. notwavingbutironing

    That was so beautifully put, Skippedy. I am thinking of cutting out some of these comments and pinning them on my notice board. Of course, I’d colour code them and then rank them in order of size and the number of times the letter ‘W’ appears (ho, ho, little ASD joke there). And boy, are you right about seeing ASD in ‘normal’ people – the spectrum is wide and I know a few adults who seem to be dangling their toes in it (most of them in my extended family). Thank you so much for your positive words. xx

  20. I adore you, NWBI. You’ll get through this. He’s still exactly him, it’s just a label at the end of the day. A label that might help you keep him on track throughout his life.

    Don’t worry about being ‘offensive’ – politically correct just gets you censored and filtered and then we’d all miss your wonderful, raw, honest writing. x

  21. notwavingbutironing

    Oh Maxabella, thank you! What a lovely comment. You’re right – tis just a label. I felt it was necessary to get it to help his schooling, but in terms of his actual life, maybe it wasn’t the right thing to do. Moral dilemma: I mean, won’t he be morally obliged to tell a future Mrs NWBI Jr that he has ‘it’? Just in case it’s genetic (which I think experts have concluded it largely is). Mind you, she’ll probably twig for herself when she doesn’t get a birthday present. xxx

    • The Geege rarely gets me a birthday present and as far as I know he doesn’t have ASD – although his mother has told me at least 1 million times that he used to push over his stroller and ‘drive’ the wheels, and he does have issues with his ‘sock comfort’…hmmm… As another annoying Speechie, I can say that things will get a lot better once you learn more about all of this and work out ways to help him see the big picture 🙂

  22. Peach

    I had a boyfriend on the spectrum for four years, and whilst some things were difficult (his unnerving honesty- ‘I liked your hair better before’, ‘you are getting fatter’-, and specific rules for physical contact) he was a great boyfriend, and the pros far outweighed the cons. Your son sounds a delight, and he will be fine. More than fine- he will be himself, and he will be great.
    P

    • notwavingbutironing

      Thank you, Peach. The boyfriend stuff, I have to confess, is one thing that worries me, but I’m glad you feel there were more good points than bad. xx

  23. Oh, I love you! I always tear over your way whenever there is a post, and laugh till I am sick. Now I just want to tear over your way and hug you till you’re feeling better. Hugs and cups of tea a’plenty. Your boy will be more than fine. He will be Yours, and that’s more than enough for me.
    xxxxxxx

    • notwavingbutironing

      What lovely words, Ladybird. I feel better already. Your virtual tea is delicious by the way – not too milky, not too strong. Do you have any virtual Chocolate Digestives?

  24. I don’t think anyone with ASD could be insulted by your post! I love your ability to inject humour into anything – none of us are “perfect” if indeed there is such a thing and your little boy is still the lovely little fella he was last week – it’s just that you now know why he sometimes behaves differently to how you’d expect.

    Oh….and 75 reminders to put shoes on in the morning is nothing….our record is 94…

    • notwavingbutironing

      Yes, he IS lovely, although I have sometimes made him sound otherwise. Thanks for the reassurance – believe me, it does make me feel tons better. It’s so true, we’ve all got ‘something’ about us that needs tweaking – and knowing what’s ‘wrong’ with him means I can (try to) be a lot more patient. Thank you. xxx

  25. I can’t even start to tell you how right you are to say this. It’s an absolutely honest reaction and in NO WAY insults other people or displays anything other than a real mum’s love of her son – absolutely. It is such a lot to take in and does change everything. everything EXCEPT how much he means to you.

  26. beth

    Just today came across your blog and this entry. I so hope the months since this was posted have been kind to you, and that you are just happy with your wonderful kid. I am the mom of a 19 year old girl with Down syndrome – she is non-verbal – quite different from your experience. It is my feeling that all your feelings are valid. Don’t beat yourself up for any negative feelings, just recognize them, then let them go. When my daughter was born reactions from others ranged from a sympathy card instead of a congratulations card, to being told that she would “grow out of it”. I came to realize that all were prompted by very good intentions. I also realized (more slowly) that just relaxing and loving her for herself is the only thing to do. Your son sounds like a great little guy, and no label changes that.
    Beth

  27. I know you’ve disappeared off planet blog and this is so old you’ll never read another comment; but I’m married to a man who’s a li’l bit Aspie. It can be a huge pain, but then again, I knew it before I married him so only have myself to blame. He does just fine. In fact, I delight in channelling his obsessions for my own good. No no no, just kidding. Sort of. Anyway, it must be difficult as hell but you’ll all be fine, if that helps…

  28. My son, who is now 10, was diagnosed late, just 18 months ago. I a taking things slowly but when I read your post it sent shivers. The sock thing hurting, the star wars obsession (with mine also Dr who and the London Underground), the play fighting and not knowing when to stop, the lack of empathy towards others but others still adoring him, it all ALL rings true. Please post more on this if poss as I am still coming to terms with the diagnosis, despite 18 months on, and feel at a standstill, lost. It was SO great to read this post, really helpful.

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