My first and only selfish plea: please help me.

Tomorrow I start a 3.5 week long incarceration of sorts.  My mother-in-law who lives in a glamorous GILF annexe on the side of our house has just departed for the airport for a holiday.  Husband is around evenings and weekends obvs and my lovely parents aren’t far away but I shall miss the opportunity to escape for five minutes at the drop of a hat.

Me enjoying a wander around my Minecraft world...
Me enjoying a wander around my lovely Minecraft world…

I have got into a routine of giving my husband a lift to the station each morning and daughter hangs out with Nanny.

I stretch this into a 20-or-so minute drive around our neighbourhood on a faux commute, watching all the so called normal people stressing out on their way to school and work.

It’s nice.

It sets me up for a day of playing Minecraft.

Over the last 10 days, surreptitiously checking my emails, blog stats and comments in response to ‘I Stand Quietly’ has fast become a beloved habit, nay addiction.

Daughter cannot leave the house therefore, whilst Nanny is away, it is only with some planning that I can leave the house.  It’s OK, we have Ocado.

I admit that with not much other adult contact likely over the next 3.5 weeks, I was thankful and relieved that at least I could “speak” to people via ‘I Stand Quietly’.

However it looks like we may have reached the top of the bell curve.  We have maybe exhausted the furthest reaches of the friends of my friends of my friends and the rate of new visits/visitors and new comments are now slowly dropping.

I know.  I should be grateful for everything that I have achieved so far.  Today I reckon we will reach 250,000 views on my blog.  We might also reach £6,500 in donations against a revised target of £1,000 that was originally set at £250.

It is incredible and I am thrilled.  But in context of my own mental health over the next 3.5 weeks confinement – and still many days until April 2nd, World Autism Awareness Day at the end of awareness week – I seriously CANNOT let this peak too soon.

PLEASE HELP ME.

If you know someone in London who you are not friends with on Facebook, or who rarely uses it: email them, text them, tell them.  There’s over 8 million people in London, someone surely will write a comment for me.

Everyone in the UK has probably got Comic Relief fatigue so if you know someone in the USA or Canada, email them, tell them to tell all of their friends.  There are loads of people in the USA.  A lot of them, I hear, are quite sentimental and schmaltzy: email them, text them, tell them.  I am bound to get someone who’ll comment me.

If you know someone who speaks French, Spanish, German, Mandarin for all I care, ask them nicely if they would translate ‘I Stand Quietly’ for me (for free please) and then we can spread the word through the non-English speaking world too… even if I don’t understand it, a comment in Swahili will still be exciting to read.

If you know a celebrity of any alphabetical listing from A to Z, if you are their lawyer or cleaner, dentist or dog groomer.  Mention it to them, please.  Ask them for one of their super valuable retweets.

Even if your relationship with said celebrity only extends to nodding and trying to act nonchalant at the gate of the private school you are grafting your arse off to keep your kids in, think of me dragging my half-naked barking beauty around Waitrose and bite down on any embarrassment you feel and tell them.  As my Mum says, “WE ALL POO.”

Do it for everyone who needs #autismawareness and candidly DO IT FOR ME.

Thank you if you have already shared ‘I Stand Quietly’, all I can say to you is: I have no shame, and trust me it is eventually liberating, please can ask you to temporarily ignore your own fear of feeling ashamed and share again.

Give the URL to strangers on tatty bits of paper, ask your boss if you can do a company-wide email, anything please!

Don’t leave me frantically refreshing my screen in panicked silence or one day when husband comes home from work he may find the daughter left unattended and me up the end of the garden: dirty, naked and happy, talking to a tree stump, believing I am a snail.

You don’t believe me?  Seriously – I have form.

29 thoughts on “My first and only selfish plea: please help me.

  1. Hey, seems like you’re in for a heck of a week. I don’t really do people so I can’t share, but it sounds like you are worried about going stir crazy with loneliness. If I’m wrong and you just want to get the word out and spread the message ignore me, but if you’re wanting someone to talk to about random crap and life to make the time pass faster, my email is taliana42 at hotmail dot com.

    I’m a 30yr old lady with aspergers. And an NT son. We are kind of in the same situation but backwards. I get to stand desperately surrounded by the thundering noise at the park as the kids scream and adults talk and cars go past until I can finally convince him to let us go home. This motherhood business is hard, yo.

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    1. Hi, I’m from Brazil, and like Taliana with Aspergers. Somedays I am too sensitive to sound, so I’ve built a “sound proof” room in my house. There are many materials you can use and this maybe help your daughter. To me small spaces tend to be helpful. If it helps her, build her a “box” , a nest – it probably will be hard (like wood) with no pillows.
      About fabrics, I’ve learned that I can stand anything synthetic. Besides that, I try to have as many options as I can (textures, colors). Teach her to feel the fabrics with her hands in the morning – to me it’s the best way to choose and don’t get frustrated for taking hours to get dressed. Whatever feels right is worth trying.
      You both have a long journey ahead, but believe me that it gets better. After childhood, we begin to learn how to cope, and how to avoid. It’s not easy.
      I’m standing quietly and alone in my room right now, and I feel relaxed. My thoughts are with you and your daughter, I hope you both can discover more and more ways for her to feel safe and not attacked by the world. My best wishes.

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  2. i just read your post on kidspot australia =) i could translate the post into french and or german, but give me a few days as am studying and also well, standing quietly with my son x

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  3. I shared on my Facebook, and shared on the Momastery page–which, if you’re not reading, is a phenomenal community. I was just introduced to your blog today, when a mama-friend in the UK posted I Stand Quietly. It was so beautifully and profoundly expressive that it immediately spoke to me–both of how empathically I understand the challenges you’ve described, and how small our challenges are in comparison with your and your daughter’s struggles.

    My sonbeam is seven, too, and also a huge Minecraft and Skyrim fan. He’s sensory seeking, with severe vestibular and proprioceptive issues, and about eleven different vision and visual-motor issues, and both inattentive ADD and ‘traditional’ ADHD. With self-regulation challenges nearly as profound as his giftedness, he’s been assessed yearly since the age of three for ASD, coming up with several traits, but below the criteria for diagnosis.

    I’ve had many of those #Istandquietly moments–when his teacher said his having untrimmed, dirty fingernails was a huge issue for her and the class (his hands are clean and hygienic, and the sensory meltdowns from nail-trimming and cleaning deep underneath the nails are epic); when our usually excellent pediatrician wondered whether he might be developing oppositional defiance disorder after his new classroom had failed to provide him with sensory breaks and tools and he was having tantrums; when a friend said she thought he was using his sensory challenges as an ‘excuse’ to avoid following rules and she feared forother children’s safety around him (he’s never been violent. ever); when he can’t handle stopping what he’s doing and gets overwhelmed enough to curl up on the floor and scream and cry, and my touching him will only make it worse; when nothing tastes good and he won’t eat for a day or two–though luckily he doesn’t gag or vomit, he just lives on juice and popsicles and scandalizes others with his poor nutrition; when the evil, horrible scourge known as daylight savings time, or the equally challenging hormone surge of a growth spurt completely screws with his self-regulation and no matter how hard he tries, he’s having meltdowns daily at school for a week. Lately (after 5 years of being fine in his bed) he only feels okay sleeping on the living room couch or on the floor in his room, pressed against the door–needing pressure from more than one side, while our doc and everyone else try to insist we’re coddling him by not forcing him into his bed.

    We’re extraordinarily lucky: he’s social and openly loving and keeps friends once he’s made them, he enjoys physical contact and cuddles except when he’s upset, he’s hilarious and witty and goofy. While regulating his reactions to sensory input is a constant drain on his mental and emotional energy, he’s learning and adjusting and we see growth and improvement. And I think he would enjoy getting to know your daughter, maybe even doing video chat with her, doing simultaneous headstands (I can measure how he’s doing by how much time he spends inverted or leaning against walls while he walks). Sounds like they have plenty in common. Let me know if you’d want to do that.

    Besides that–thank you for writing, and sharing, and I wish you all the best. I’ll do my best to leave comments during your confinement and to keep spreading the word. 🙂 And as one mama-friend said to me recently when she saw me having one of those moments: *The Struggle Is Real*. ❤

    Warmly,
    Johanna

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    1. Johanna, I wrote this in another response and then I read your comment: build him a wooden box. Big enough for him to curl inside. It helps me a lot to control my body and avoid the sense of despair with all things around not touching me.

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  4. Dear Snail.

    Hoping you have survived your first day of incarceration, avoided all the salt and made it halfway down the garden. Hope it’s not too cold a night, although that is when the stars look best. Remember that they shine for you just as much as they shine for wolf girl. You can still see them from indoors, just pull back the curtain and peek out… they will still be just as bright in 3 and a half weeks time. And before then you get to eat all the Easter chocolate!!

    My spd son and i look at the sky a great deal, when he is holding my hand tight, in between melting down and kissing my arm nonstop. there is so much to see up there and somehow it is calming. for both of us.

    lots of love

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  5. “I Stand Quietly”….incredibly sweet, incredibly touching and incredibly full of love. Thank you for writing it, it’s simply breathtakingly touching to anyone. I’m Italian, perfectly bilingual and would be honored to translate it. In the meantime, already shared on FB…..let me know, supermom!

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      1. Ok great. Please let me know how should we proceed….do you want me to email it through this website at the email you have here? By when do you need this?

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  6. I live just outside of London – do I count?? I have a 21 year old son with ASD and a nephew with Asperger’s. I read your ‘I stand quietly’ article and held back tears. Those days are long ago for me but still feel like yesterday when I am reminded of them.
    Be brave, be strong and most of all enjoy it, every little minute, and laugh – as often as possible!!! It gets better, easier and eventually you don’t give a crap about other people’s reactions! x

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  7. Dear God, that made me laugh. I’ve tried to reblog, but WordPress is not my friend at the moment. However, as a new blogger myself, I totally get your obsession with stat-checking and I will put it on my facebook page. If you are able to I’d be thrilled if you took a look at my blog, it’s probably less inspiring than yours, but I can be quite funny at times (in my humble opinion). You’ll find it at: aguidetogettinglifewrong.com. I truly hope you survive the next three and a half weeks.

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  8. OMG, you are some woman, I would absolutely love to know you in person, alas we live in Austria….
    Yesterday, you got me really thinking and tears rolled down my cheeks when I read “I stand quietly”,
    Today you made me laugh out loud..
    And, your texts all remind me of certain times or situations in my own life… so here you go, here is my post, and I hope I won’t disappoint you (too much).

    I will not tell you what to do, nor about new therapies, nor what helped us, nor anything like it. I will tell you a bit about my family, because I think it feels good to be able to relate to others, hearing their stories, knowing one is not the only one nor alone…

    I am home today, my 6 year old puked last night, twice, and my 12 year old, our son with special needs and being somewhere on the autism spectrum, decided this morning that he felt sick as well and refused to eat breakfast.
    “Obviously” by now he is happily roaming our home, and in between also ate said breakfast… I don’t say he feigned his being sick, he did look a bit pale in the morning, BUT… I can not be certain. My son does not talk verbally, makes it a bit more difficult to find certain things out…

    We have two more kids, an 11 year old (right now at school) with whom I enjoy the onset of puberty in all its glory, and a 3 year old rascal girl (right now at Kindergarten).

    We live in Tyrol, in the mountains, and go skiing and tobagganing in winter time, though my son is more occupied with watching the ski lifts go than with skiing itself. A few weeks ago he ran over a skiing instructor. Well, maybe “ran over” is a bit harsh here considering he was a far cry from light speed, you have to rather picture him going at the speed of a snail… because, remember, ski lifts… soooo awesome to look up there and watch…

    And now a few comments & thoughts on things, life and the universe:

    1. your post, “I stand quieltly”: for me it had nothing to do with being depressed or letting the world know what a pitiful person you are, it was a statement, it was simple descriptions of life, in powerful words, full of love, no kitschy adornments… Shakespeare could not have worded it any better… 🙂

    2. Yes, I would like to change certain things for my son as well or skip things, and there is a lot of that, such as…
    – G-tube weaning in Graz, when he was two years old, I could easily skip the lying-on the-floor-of-my-two-year-old-baby-crying-his-heart-out because the hunger hurt so badly. I could have easily gone from breastfeeding to solid foods. Didn’t happen though.
    As a 6 months old he would not let anything near his mouth (besides my breast, he was used to that and had learned early on with the sucking reflex still in place, that it helped him feel good in his tummy). No toys, no fingers – not even his own -, simply no nothing and definitely no food… it lasted until he almost dehydrated because the doctors acted too slow and underextimated the urgency. Could easily skip THAT experience as well, by the way.
    – His issues with aggression, could easily skip that: he had those issues, NO fun here. When he got overwhelmed and scared and certain parameters came together, he would lash out in all directions, no matter who was in his way.
    With all my heart I am happy that we are past that, and I NEVER want to go back, nor does he. It was horrible for him, it was horrible for us, it was horrible for my other kids..
    – Well, would I want to totally change him to a healthy average boy? What a question, I can not, he is who he is and I love and adore him.
    Inside of him there is this beautiful soul of his, that sometimes is allowed to shine through. My goal is to allow it to shine through more and more often, to have the beauty of his soul more out in the open and for all – especially for him – to know and see.

    3. RIP, things I put to rest: putting to rest my frantic search for new therapies, new approaches, scanning websites like a crazy woman….
    Example: one of his issues are and were chewing and talking. I once was absolutely desperate for him to learn chewing so he would be able to talk, I cried my eyes out.
    Of course I do not say that I have totally given up, that would be stupid, but I guess I put it in the right proportions: I am not the therapist, the therapist is.
    Whenever an opportunity comes along I will jump into action, but not frantically, I will not want to force things, I won’t pull the gras to make it grow faster as it won’t.

    4. I guess I accepted that he never will a normal, average kid. Or to use the above example, he never will be able to talk even close to normally, but I still will help him to go as far as he can go, WITHOUT sacrificing myself.

    5. I also know with certainty that the help he needs (not what I want, but what he needs), he will get and I humbly pray for it.

    And now I have to call back the Osteopath to make an appointment. She had gone to Vienna on Friday, the day of our last appointment and hadn’t reached me, because I had changed my phone number. Stupid me, forgot to give her my new number, so here I was in front of closed doors.

    All the best to a terrific person, xxxx
    Birgit

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  9. FoxTears here from HowAutisticFeels. I’ve written an opinion piece about your poem (and maybe gone off on a tangent about interfering busybodies peddling cures, and WHAT exactly we should be trying to cure). Thanks for spurring me to get more posts out into the world to try and help people understand what we’re going through.

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  10. Your piece was beautiful, powerful and very moving. I did not get the sense that you were being a martyr whatsoever. Just a real glimpse into how your experiences are. You are a brave soul who is inspiring to many, not just parents of children on the spectrum. Be proud of everything you put out there.

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  11. How are you doing 1 week in? I shared “I stand quietly” on FB and got a like from pretty much every parent I know. We all feel very lucky that our own children don’t face the difficulties your daughter had. You didn’t come across as a martyr at all: to me your post was all about her and how you do whatever you can to try to make things better – or indeed bearable – for her. I read it on the bus, which was embarrassing as that isn’t a great place to be reduced to a blubbering wreck. No experience or advice to share, but sending you love and good wishes x

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  12. I read your beautiful poem a week or two ago and came to read your blog. Saw this post and wanted to comment, because I know that “oh dear God, I need to talk to a grown up” feeling all too well (husband travels frequently.). So here is a bit of schmaltzy American company.

    My son, now 7, was moderately sensory avoidant when he was a preschooler. We were very lucky and he overcame much of it with OT, behavioral therapy, age, and large amounts of luck, but is still quirky and in various therapies. We had lots of fun situations, like being the room parent and having to strip down all the party decorations I’d just put up because it was my own child freaking out at the visual stimulation. Or going to a birthday party for two minutes and leaving because it was way, way too much. Or being unable to wear actually appropriate cold or rainy weather gear because it was “too noisy”. And let’s not get into fabric textures or tags or any of that. And I was just thinking today about he debacle that as swim lessons in the pool with fountains and sprayers and lanes and slides.

    So anyway…I empathize. On so many levels. And I went though a tiny fraction of your day to day experience. I think you are amazing for staying home and sticking it out with your daughter. It is not easy. I am so glad she has you in her corner. And that you have a wonderful voice to seek help for her and for you.

    And I’m here commenting. And I’ll be back.

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    1. Thanks – that really made me smile – I’ve just been trying on a load of new clothes that I ordered online and seems like they’re all going back – one thing about having a visual sensitive kid, you never get told you look good unless you look REALLY good “mum, take that off, you look totally bad, I don’t know why you try stuff like that, you are making me feel awful AND I am embarrassed…” Haha!! Xxx

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