Charity, and trust. 

I know  a disabled filmmaker, activist and all-round nice guy. He uses a power wheelchair that is unfortunately no longer fit for purpose. His girlfriend set up a Go Fund Me fundraiser to raise money to buy a new one, as the US government won’t help him and he is stuck at home as a result. I, along with many others, happily contributed a small sum towards this, and passed the message on, without incident.

And then, one day, a nasty troll came along. A troll who happened to be disabled themselves. And who insisted that disabled folk asking for a bit of help from their friends, or even from total strangers, was somehow harming ‘the cause’. That it was ‘begging’ and ‘demeaning’. And a pile of other baffling statements.

And it made me stop and think. And remember my pledge, made after the Central Remedial Clinic scandal in 2014 and  the Rehab scandal of the same year. The pledge was to only give money to people I knew and trusted. And not to faceless ‘Big Charity’.

And I was reminded again of my pledge as I read of proposed cuts to the special school my sister went to, while staff from the parent charity stayed in fancy hotels while at conferences. These cuts have now been reversed, for now. But the lack of accountancy remains.

And again as more details emerge about the Console charity scandal.

And so, I have kept my pledge. I donate clothes etc to the charity shop at the end of my street. The owner is Kenyan, and her mother and sister run an orphanage for AIDS orphans there. I have seen the photos, I have talked at length with her. I trust her.

I give money to Katherine, the homeless lady who sleeps rough beside my local shops. I try to stop and chat whenever I see her. I suspect she may be autistic as we seem to have conversations without ever making eye contact. And she sometimes makes inappropriate remarks. But, she’s been sleeping rough for over twenty years, and no official charity’s going to change that. And yes, she may spend the money I give her on cigarettes. But that’s her prerogative. Again, I trust her.

And as for the folks I’ve supported through sites such as Go Fund Me. Or even by direct donation to their websites. These people are not begging. They are not letting down any cause. They simply need a bit of help from their friends. And the one thing they all have in common is they do a lot of unpaid work in areas that are important to me. Some are disability advocates, some help those with eating disorders, some simply write articles that make me think, or make me laugh when I’m feeling down. And again, I trust them.

Might I be a bit foolish and naive? Might some be con artists parting me from my cash? It’s a possibility. But it’s a lot less likely than if I were to trust Big Charity. That much I know.

And so, I’m happy with my pledge. And all that troll has achieved is make me even more determined to help those I can. And when they get their shiny new wheelchair, or pay for that specialist treatment, or even take a well deserved holiday, I will be happy I helped contribute to that.
UPDATE: the filmmaker I mentioned is Dominick Evans, and here is a link to his Go Fund Me. Just in case you too were inspired by a troll!
[image of a wheelchair symbol in black]

Incognito Autistic…at Sports Day

So, my daughter had Sports Day today. And it sparked many thoughts and feelings and memories.

I used to hate Sports Day. The mere thought of its approach filled me with dread. I hated the break in routine, the noise, the general chaos, and the other kids. And I hated the physicality of it. It hurt. My joints hurt, my sides hurt, my brain hurt.

I would try my very very best. But my efforts were always in vain. Invariably, I’d come last in every event. One year, I did manage to come second last in a race. I still remember it clearly. The effort nearly killed me.

In secondary school, I once hid in the changing room. The male PE teacher went in and chased me out. Yes, very inappropriate. But the guy didn’t like me as I clearly hated PE. After that, I used to go hide out in the nurse’s office, faking a migraine. Though often the migraine was real, brought on by the stress of it all.

I thought, as an adult, my Sports Day days were behind me. No such luck.

The year I lived in Japan, I had to take part in the Sports Day of the junior high school I was teaching in. They take Sports Day very seriously there. An all-day event. In the height and heat of Summer. And the teachers have to take part. As in, physically. Which meant I had to go buy a tracksuit and runners for this one day. I managed to avoid most events, but got snared into the 100m relay. And ended up the laughing stock of the school as I wasn’t versed in the correct way to pass the baton and so our team lost.

And now, I’m not a student, I’m not a teacher. But as a parent, I have a slightly different version of Sports Day. It consists of turning up in a local field. Alone. While the other moms somehow gather in groups of two or three. And I stand there, in the inevitable rain, cheering my kids on and taking photos. Cheering them up when they too come last in every event. Shooting wicked looks at the kids who giggle and tease them for it. Hoping the teacher will do her job and sort them out, but unable to approach her to make sure. Counting the minutes till I can go home and sit down. Wincing at the loudspeaker announcing the next event. Grateful the school doesn’t give out medals. And though the kids seem to enjoy themselves, and never protest about it, grateful that my GP suggested pulling a sickie if they didn’t want to attend. Wish I’d been allowed to do that!

So, today I survived another Sports Day. Because the school is quite large, they do it over two days, so I’ll have to endure it again tomorrow. So I just need to grin and bear it, and be thankful I don’t need to run in any relays!

[image of two rows of children, in a field, taking part in a race, holding hula hoops. There are two red cones in the foreground.  The image contains a ‘Canva’ watermark including diamond hatching, indicating this is a stock photo and not a photo of my actual children.]

Autistic Pride Day: Pride not Puzzles

Today, June 18th, is Autistic Pride Day. And while I’m proud to be autistic, today and everyday, today I am also raging mad. Curious to see how others were expressing their pride, I went onto Twitter and checked out #AutisticPrideDay. And there, amongst the expressions of pride, self-love and solidarity, I found images of … puzzle pieces. Excuse my language, but I fucking hate fucking puzzle pieces. And yes, I am mad!!

I admit not all autistics react in such a negative way to the puzzle piece symbol. They do seem to be in the monority, but I respect their views. This post shows opinions from both sides. And this one goes into detail on why they don’t like it either. And this beautiful post by Judy Endow explains how she used to use puzzle piece symbols, but no longer does so.

And so, I find myself, in 2016, being faced with image after image showing this outdated and (to me) offensive image, and I am mad!

I am not a puzzle. I am a proud autistic lady. And all I want is to be able to use a hashtag on Twitter that I can be proud of, instead of (yet again) finding my efforts, and my day, co-opted by unthinking parents and professionals, and possibly even a few autistics.

I won’t go into other issues I came across today, such as Person First Language, Functioning Labels, use of words like ‘disorder’ and ‘disease’. I’ll leave those for other blog posts. Because there’s only so much rage I can handle!

I am a Proud Autistic, not a Puzzle!!!
[image of the words ‘Down with this!’ in black. Below it is a grey ‘thumbs down’ symbol. Below that is a Puzzle Piece symbol made up of four puzzle pieces: two red, one yellow and one blue, forming a square.]

ABA, Abusive Bullying of Autistics

I first time I heard of ABA, it was a newspaper article about parents of autistic children fighting the Irish government, trying to get funding for their children to attend ABA schools. At the time, I thought of it as a classic ‘David vs. Goliath’ situation, and I was naturally on the side of David. But, because my son was just a baby at the time, and I knew very little about autism, or that we were autistic, I didn’t think very much beyond that.

How things have changed. I’m now grateful that the Irish government won’t automatically fund ABA. Now, I’m not naive and I realise this is more about cost-saving by the government, as ABA is very expensive. But I’m still grateful as it limits the number of autistic Irish children being exposed to this so-called therapy.

My first realisation that ABA is not the wonderful thing it was made out to be in that article, was when I started reading books and blogs written by autistics. The first such book, was an anthology published by the Autistic Self Advocacy Network, called Loud Hands: Autistic People Speaking. The title is a reflection of the ABA demand for “Quiet Hands”, where autistics are forced not to flap or wave their hands, often by making them sit on them. It was a very eye-opening, and heart-breaking, read.

And then I read this, and this and this. Written by the mother of an autistic child, Emma, who developed trauma due to ABA.

And this, another traumatic account by the parent of an autistic child.

And this from yet another parent.

And then there’s this. From a website dedicated to busting myths about autism.

This post was in response to a newspaper article similar to the one I’d first read about ABA.
Many adult autistics are also speaking out against ABA. Here is Amy Sequenzia’s take on it.

And here is another piece written, with advice for parents and for therapists.

And this by Sparrow Rose Jones is a very well written piece.

This piece is an answer to parents who say ‘but my child enjoys ABA’.

This piece is written by a professional who teaches autistic children to communicate.

And here is a piece written by a former ABA therapist.

And for those who go on about ‘Old ABA’, this was written in 2015. So, not long ago at all.

There are many many many more.

My final link is by Michelle Dawson. It’s very long but very thorough, about the ethics and science surrounding ‘treatments’ such as ABA.

I recently got some fight-back and defensiveness from parents of autistic children, who are big defenders of ABA. And my question to them was ‘why do you think autistics are against ABA? We’re not saying these things for the fun.’

Unsurprisingly, I never got an answer.
UPDATE: I have just come across this wonderful post with many more links than I have here. Not only on ABA but on ‘social skills’ and ‘compliance’ and ‘indistinguishability’ training. I urge anyone with any interest at all in ABA to read these posts.

UPDATE AUG 2017: Seems ABA has given rise to an offshoot, PBS (which an autistic friend suggested stands for Punish Bloody Stimmers!). Do not be fooled, this is ABA ‘rebranded’ to appear less harmful. Here’s a brilliant blog post about it. 

[image of the words: ‘Abusive Bullying of Autistics’ in red]

Confessions of a Cloth Nappy-holic

My lovely neighbours had their first child a few weeks ago. Being laid-back actors who opted for a home birth, I figured they might be in my wavelength about a few things. So I tentatively asked them if they’d considered using cloth nappies. Why, yes. It’s something they were considering.

And so it starts.

I used cloth nappies on my two. It started off as a way of saving money, a way of helping the environment, a way of getting away from disposable nappies that smell so weird and feel so harsh.

I initially started part time. Still using a disposable at night or when travelling. But by the time my daughter came along, I’d gone into full ‘cloth nappies as special interest’ mode. I researched them, bought obscure brands, tried out all sorts of novel arrangements. I even had a blog. Yes, my very first blog, seven years ago, was dedicated to cloth nappies. But I only wrote a few posts, as there really isn’t too much to write once you’ve covered the basics.

So, with that background, was it any wonder that I recently went to have a gander over at Fluff Heaven, a cloth nappy store based in Newry, Northern Ireland. They really are the closest Irish shop, as the ones based in the Republic seem to have all closed down. I suppose we don’t have the market for them.

It just so happened that Fluff Heaven had a sale that day. Yup, you know what that means. My finger just accidentally slipped on ‘buy’ for a few items! And so today I popped into my neighbours with some fluffy post! I feel like a drug dealer giving out free initial samples. Maybe Fluff Heaven ought to pay me commission. Or a gift voucher. Hint hint. But obviously I just like promoting cloth nappies. It seems special interests never quite leave you.

For the rest of this post, I’m just going to write a very quick primer on cloth nappies. If there’s enough interest, I may write in greater detail about them at a later date. So, here goes:

Cloth Nappies 101:

All cloth nappies consist of two basic components. A waterproof outer layer, and an absorbent inner layer. These can be separate layers,  or sewn together. There are also various combinations and permeations but that’s the basic bottom line: waterproof and absorbent.

As for sizing, you can either opt for sized nappies, buying bigger sizes as your child grows, or Birth-to-Potty ones that you can expand to fit different sizes. It was these that I decided to buy, as they work out at better value, though the sized option can be a better fit for some babies.

The first nappy I got my neighbours is a Bumgenius Freetime. It’s an All-in-One nappy, which means the cover and inside are sewn together, so it’s the closest in form and function to a disposable nappy. The inside is made of microfibre cloth, which fold out as flaps and so make drying much faster than other All-in-Ones. The flaps are covered with a stay-dry layer as its not good to have microfibre actually touching the skin. As Freetimes were not around until my kids were too old for them, I’ve no personal experience of using them. But I do like the Bumgenius brand, and the makers Cotton Babies, a US company that produces high quality products. So I’ve no doubt it’ll get a lot of use. Because they’re quite easy to use, All-in-Ones are often a good choice if leaving your baby with grandparents or babysitters. This particular version uses Hook and Loop closing, so it’s again  very like a disposable nappy.

[image of a white Bumgenius Freetime Nappy, in the closed position and newborn size setting]


[image of a white Bumgenius Freetime, opened out to show the inner absorbent layer]

The next nappy I got them was a Bumgenius Pocket Nappy V.4. The versions I used with my kids were V.1 and V.2, and the newest is V.5, but they all work on the same basic principles. Pocket nappies are so called because the outer layer is sewn to a stay-dry layer to form a pocket. The stay-dry layer helps wick away moisture from the skin, while also ensuring the microfibre doesn’t touch the skin. The microfibre layers come as removable inserts, which come out in the wash and so dry really quickly. You get two inserts with the nappy, a newborn insert and a one-size insert that you can adjust in size as your baby gets bigger. The newborn inserts make great boosters too. You then stuff them back into the nappy when dry, and stuffed nappies then function as All-in-Ones and so are also very similar to disposables. The nappy I got uses poppers instead of Hook and Loop, which some people prefer for toddlers as they are harder for them to get out of! The poppers can be a bit tricky to close on a wriggly newborn though!

[image of a closed Bumgenius Pocket Nappy in a bright yellow colour]


[image of two microfibre inserts, a newborn one on the left and an adjustable size one on the right]

The final nappy I bought for my neighbours was a Flip Hook and Loop Cover with a box of Newborn Inserts. Flips came out when my daughter was nearly done with nappies, and I wish I had had them from the start. They were, by far, my favourite nappy system. And at the height of my obsession, I’d tried at least 30 different brands of nappies! They consist of an amazingly leak-proof waterproof cover which contains flaps at the back and front to hold in place the inserts. You can buy organic cotton inserts, disposable inserts (handy for travelling) and stay-dry inserts, which is what the newborn ones are. But, to be honest, you can use nearly anything as an insert as the flaps hold them in place. I’ve used pad-folded muslins, old t-shirts, even tea towels in emergencies. The covers also fit around any other type of nappy, so you can mix and match with different brands.

[image of a closed Flip nappy cover, in light pink.]


[image of a pink Flip cover, opened to show a newborn insert inside.]

Cotton Babies also have an economy range called Econobum, which consist of a one-size cover and prefolds (pre-folded pads of cotton absorbent layer, which are also great inside Flips or pocket nappies). I used these a lot too and loved them, though the lack of Flip-style flaps made them a bit trickier to keep in place with a wriggly baby. They are a great option too, but as they weren’t included in the current sale, I didn’t buy any.

I won’t go into the washing, storing etc right now. The personalised advice feature of the Fluff Heaven website is very useful though for more specific help, as is their general advice area. And there are many similar websites and shops based all over the globe.

Writing this post has made me a bit broody, so I’m off to do housework to remind myself why I don’t want any more kids! 😆

Gorillas and mourning…

The recent killing of an African Lowland gorilla, Harambe, at Cincinnati Zoo, has gotten a lot of attention. He was shot because a four year old child fell into his enclosure. I’m not going to go into the ins and outs of the situation, because what’s done is done and talking or blaming won’t bring Harambe back. Though there is definitely a discussion to be had on racism in the media and the population at large in how they reacted.

Less than 24 hours later, another captive African Lowland Gorilla died, this time after a short illness, in Dublin Zoo. His name was Harry and left behind his partner, Lena, who now seems to be grieving.

And now I’m getting to the point of this post. It was a thought I had after hearing of the two deaths, and it was emphasised to me again after reading this email from Jane Goodall. What about the other gorillas? Do they get to mourn their loss? What will happen to them now? Are their hearts breaking?

And I don’t mean, what new arrangements will be made for them by the zoo authorities. This article goes into the logistics of gorilla matchmaking and breeding. I’m not talking about that. I’m talking about loss and bereavement. I know nothing about gorilla behaviour, in captivity or the wild. And I wonder what happens to dead gorillas in the wild. What happens to the bodies. Are they left there? Are they tended to by their families? In captivity, I assume the bodies are removed and buried somewhere (but not without removing and freezing semen!) or probably cremated. Or are they stuffed for an exhibit?

What happens to Harry and Harambe now they are dead? What happens to their friends and families?

And, again, I question why gorillas are kept in zoos in the first place. Which is the subject of this article. Can genetic diversity not be provided for by tranquilizing wild male gorillas and then collecting and freezing their semen? If you can do it to a dead gorilla…

When I was 12, I went to the zoo with my sisters. It was to be the last time I set foot in one in years. Because, we visited the gorilla, a single female if I recall correctly. Might even have been Lena, though before she met Harry. In any case, I remember staring into that gorilla’s eyes and becoming overwhelmed with sadness. I could feel her loneliness through the bars. And so I swore off zoos. Until my son wanted to visit one when he was three. Which I gave into, and we managed to skip the gorillas.

Harambe (also spelled Harambee) is a Kenyan word that means ‘ together in spirit ‘. I learnt this years ago, when I asked the Kenyan lady who owns the charity shop on my street of about the name of her shop. So, I say, let us work together in spirit with the African Lowland Gorillas and find a way to protect them in the wild, and stop them languishing and dying in our zoos.
[image of the outside of a charity shop. A painted sign reads: “Harambee” with the words ‘Together in spirit’ underneath. Visible is the shop window, and various items for sale both inside and outside the shop, including dresses, shoes, a high hair and a pushchair. There are photos of Kenyan orphans in the window, with Irish flags painted on their foreheads with face paint. They are smiling. ]

Incognito Autistic… on an Autism Course

I have recently attended a few courses intended for parents of autistic kids. This post is not meant to reflect on any one course or session, but rather it reflects what’s going on in my mind during such events.

So, it usually starts the second I sign up for the course. Have I written it down in my calendar? The exact dates and times? I once didn’t, and forgot about it and missed the first two sessions. Another time, I wrote it down but on the wrong day, and got a phonecall asking where I was. But wasn’t that on tomorrow?!

I am already feeling nervous about this. Will I find the venue? I scope it out the day before, either by foot if it’s close by, or on Google Maps if it’s not. I try to arrive late, but inevitably arrive early. I go sit down in the front, like the swat that I am. Well, it’s actually because my eyesight’s so bad, even with glasses.

Oh, here come the other parents. Mostly moms. They arrive single or in pairs, but immediately gravitate towards each other and start to chat. Quick, stare at my phone, look busy, so nobody will approach me.

Too late. Here comes Autism Mom. It’s the nickname my husband and I gave her as she is the embodiment of one. She was on the last course I did. She keeps turning up at the same ones. And the same Facebook groups. And somehow thinks I’m her friend. She comes and sits next to me. And starts into her tirade about lack of services for our kids, and how she’s heard great things about the GAPS diet. I smile and nod and pray for the course to begin.

I really hope they don’t ask us to introduce ourselves, have some sort of ‘ice breaker’. I don’t want to break the ice. I like having the ice between me and them. And I hope there isn’t an ‘interactive’ component. Reading out phrases on pieces of paper picked out of a bag like a lucky dip. What does that accomplish exactly?

And so, it begins. “children with autism this, children with autism that…” Each “with autism” feels like a bullet to my brain. Would it hurt to say Autistic once in a while? Please, just say the word. Just once. I do hear it eventually, in a video clip, when an autistic person is describing themselves. Oh yes, the obligatory video clip. With poor sound quality and no captions and I just can’t take it in. Even worse is when they try to recreate ‘what it feels like to be autistic’ with those jarring sensory videos that make me dizzy. I don’t need to know what it’s like. And most here will never know.

But, surely, I can’t be the only autistic parent here? We are not addressed directly. Does not sound like we exist. Every single thing is framed around neurotypical parents trying to figure out their autistic children. Like we are an alien species. But, that lady in the far corner, taking notes but not interacting with anyone, I bet she’s one of us. I later find out that she is, indeed, autistic. My radar has not failed me!

And I do need to comment on the note-taking. Some courses give handouts and notebooks. Others promise to email on the presentations. So, why all the note taking. Hate to break it to you all, but we’re not actually in school anymore! I only write down things missing from the presentations. Usually names and email addresses and websites. And I certainly don’t write these down by hand. That’s what the Notes App on our phones are for. You know, technology. Better than painful and illegible handwriting.

Anyway, I can’t afford to waste cognitive facilities on note taking. I’m trying to listen and concentrate. But hard to hear over the sound from the fluorescent lighting. Or when the course takes place in a school and it’s break time and the noise of screaming kids fills the air. Make them stop! But they’re just having fun. I’m getting a headache. And the expert is now talking about sensory difficulties.

And I wish I had brought my sunglasses. But then I’d stand out. My cover would be blown. Best to stim discreetly, bite my nails, pick the skin on my lips. And I’ve lost all feeling in my legs from sitting so still on these hard chairs. And now my head is pounding. And my heart racing. And I hope nobody’s looking at me.

Countdown. It’s nearly over. I want to leave but don’t want folks to see me leave. That’s the problem with not sitting in the back. I try deep breathing. It buys me a few minutes. Now, it’s time for questions from the parents. I bite my lip. I want to stand up and say ‘NO!!’ I want to give advice from an autistic perspective. I want to say’ don’t try to make us conform. You need to change your expectations.’ Because the ‘experts’, those giving the course, are kind-hearted but don’t really know. They are learning, they are trying, but they don’t really know. Like how I can’t know what it’s like to be gay, or black, or a Jew.

And so, ultimately, I go home none the better. I may glean one or two nuggets of gold. Suggestions that may help my family. But, most of it, padding out that new info, is a lot of old news. Because Autism is my special interest. (‘Obsession’ the lady today called it) I have read the books, by both autistics and non-autistics, I have watched the videos, I have thought about it for months and months. And i feel I’m wasting my time on these courses.

I wish I could attend a course designed and delivered by an autistic person. I wish I could have input into such a course. And if I did, I feel I could finally ‘come out’ and take part fully and be included. And, ultimately, that would have the greatest benefit for me and my family.

 

[image of a black and white photo of the top right hand quadrant of a clock, showing Roman numerals XII to III. The hands show it’s a few minutes past twelve. ]

 

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