Back to School 

Back to school. Those three little words fill me with dread each year. Without going into detail, I’ll just say that my children’s (particularly my daughter’s) experience of school mirror my own. That, combined with the early starts, which none of us are good at, lead to a sense of dread in our household as September approaches.

This year, I was more organised. I prepared an ‘information pack’ for each teacher. My son, as luck would have it, came down with a virus the day before school was due to start. So, he hasn’t met his new teacher yet, but I had a quick chat with her and will have a meeting with her next week. My daughter’s new teacher was very receptive to the info. It helps that she taught my son last year. Fingers crossed she’ll read the info and it’ll make a difference.

So, what exactly is in this ‘information pack’. First of all, I am delighted that there are now Irish  charities I can go to for information. The teachers seem to like these more than their English equivalents. I suppose because there are slight differences in the education systems of the two countries.

For EDS info, I printed off two leaflets. They were prodused by Irish EDS and HMS. The first is A Teachers Guide to Ehlers Danlos Syndrome/Joint Hypermobilty Syndrome and covers the basics. The second is Tips for Teachers of Children with EDS/JHS and gives more practical advice.

For information about Autism, I went to a newish charity run by an autistic person, Adam Harris, called As I Am. They have produced a printable school handbooks, and I chose the one called All About Me. It provides boxes to fill in, where you can write about how different aspects of autism effect you, personally. It seems to be aimed more at secondary school students but my kids had no problems filling in the spaces. Though I did all the writing, with them dictating to me what they wanted written. It should hopefully give their teachers an overview of their situations.

Another item I added to the pack was a notebook, to form the basis of a Home/School diary. This is to enable me to write messages to their teachers, maybe about any issues they may have at home such as flare up of pain or fatigue. Likewise, their teachers can write about any school issues, so I don’t end up hearing about them a week later when less can be done about it.

Finally, I went to the fabulous Stickman Communications shop and ordered the “Today is…” Wristband set, one set for each child. They haven’t used them yet as we forgot in the rush to get out of the house, but hopefully they’ll come in useful. Especially as my kids have trouble expressing to teachers how they are feeling.

So, that’s the sum of my ‘extra’ preparations for back to school for my kids this year. Hopefully it’ll make a difference.

This year, “back to school” has additional meaning for me as well. You see, I myself may be going back to school too! I’m seriously considering applying for the University College Cork Autism Studies cert/diploma. Its a part-time course (one year for cert, two for diploma), and I can actually do it here in Galway as part of the UCC outreach program. The application deadline is fast approaching so I really need to make my mind up about it soon. If I do go ahead and do it, you can be sure I’ll be writing plenty about it!

 

[image of the contents of the information pack I prepared for my kids teachers. On the left are printouts of the two leaflets produced by Irish EDS and HMS. Next to that is the printout of the As I Am booklet “All About Me”. Overlaying these is a red hardback notebook, to be used as the Home/School Diary. On top of this are three wristbands, one red, one orange and one green, that form the “Today is…” Wristband set. The background is a wooden floor.]

 

 

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Incognito Austistic… getting a haircut. 

I went to the hairdressers today. First time in three years. It was time for my daughter’s bi-monthly trim, so we made a girlie mother-daughter date of it. When the hairdresser heard how much I wanted cut off, she sounded surprised. Kept asking if I was sure. Yes, yes I was. My hair wasn’t long because I liked it like that. I’ve always liked having pixie hair. It was long because I can’t bear going to the hairdressers.

It’s not the chit chat that bothers me. Not so much. Or the music. Not in my local hairdressers. Which is usually full of old dears getting their wash and set. So you know it’s not fashionably expensive. I knew it would be quiet on a Friday afternoon, in fact we were the only ones there. And the music is one of those soft Christian Rock stations. So no loud techno beats. And the Polish hairdresser doesn’t talk as much as her Irish colleagues. Just asks me if I’m really really sure I want my hair that short. And to keep still.

And, really, I realised today, that’s the actual issue. The keeping still. Sit up straight, she says. I thought I was. Face forward. Again, I thought I was but apparently my head is turned to the right. She keeps having to adjust it. And then my neck aches. My back aches. And I desperately want to fidget, to move, to jiggle my feet.

The worst is the blow-dry. It always comes just as I think the ordeal is over. And seems to go on for ages. And the hot air on my face makes me want to pass out. I never use the blow drier at home. I don’t need to. My hair dries really quickly. I feel like running away, but I don’t.

As a child, a local lady used to come round to our house to cut our hair. Then, when we moved, a neighbour opened a salon in her garage. Just her and one apprentice, and two seats. I used to play with her daughter. Well, kind of. And I loved the fact that our houses were identical, so I knew the door at the back led to her kitchen, and that behind the far wall was her toilet. I used to distract myself from it all by imagining the similarities and differences between our two houses.

When I got older, I discovered Turkish hairdressers. Who, according to the tradition there, are mostly male. And who work incredibly fast, and charge very little. They really are masters of their craft, and take it very very seriously. And so began a tradition of getting an annual haircut while on holidays in Turkey, and letting my hair grow out in between.

But, we haven’t been to Turkey for a few years. Given the volatile situation there at the minute, it’s uncertainly when we will be there again. And so, my hair having gotten to that too-long, straggly, unmanageable stage, I decided to take the plunge. And I survived. My new repertoire of relaxation techniques payed off.

End result? I’ll let you be the judge of that!

[image of me, a white, female-presenting person, wearing a pink top, wearing glasses, with long, greasy, light brown hair, parted on the left. ]

[image of the same person as above, in the same top, in the same seat, but with much shorter hair. It’s a variation of a ‘pixie cut’ but with a fringe brushed over to the left. ]

Incognito Autistic… at the Galway International Arts Festival. Part 1: Insects

Every year, Galway holds an Arts Festival for two weeks in July. And every year I try to go to at least one event. For the last few years, the free family-friendly outdoor spectacle has occurred at night. And put off by the inevitable crowds, especially the drunken crowds associated with Galway by night, I have regretfully avoided them.

But this year, reading about giant robotic insects swarming down the main street, I knew I had to at least attempt to go. It was on over two nights, and the first night we were all exhausted and it was raining, so we gave it a miss. We nearly missed the second night too, as again we were exhausted. But somehow, at the last minute, we got a second wind of energy and headed into town. Which, lucky for us, is a five minute walk.

The streets weren’t too crowded when we arrived. We found ourselves a perch on a window ledge in front of one of the many pubs that line the street. And, even luckier, we happened to be sitting right under a heat lamp. Which was very welcome since it was a cool night, typical of Ireland in July. Also lucky was the fact that the rain stayed away.

Even with a sort-of-seat, I found myself fading after a few minutes. Especially as I’m always on high alert in crowds. I can’t just relax and enjoy the atmosphere, my fight-or-flight reflexes kick in almost immediately. But the kids were happy, hubby went to the shop and brought back crisps and drinks, and I knew I could get through it.

After about half an hour of waiting, the first of the fantastic beasts crawled towards us, in time to some loud but lovely techno beats. It was a giant ant, powered by a lady pedalling ferociously underneath. Another ant followed soon after. Behind that, was a praying mantis, and a spider, which veered off down a side street before it had reached us. But nevermind, we knew where it would end up so we headed in that direction. We were not disappointed, as the ants and other creatures converged, and had a stand-off of sorts, before joining up again and heading down another street.

At this stage, we thought we’d be clever and take a short cut, so we could catch up with the action again. However, we misjudged it completely and ended up losing them. It was clear, though, that the best of the show was over and it was time to go home. It had started drizzling by this stage too. The kids were a bit disappointed, as they were still hyped up and overstimulated, but had calmed down by the time we got home.

All in all, it was a success. I survived the crowds, I enjoyed myself and, though exhausted, I was glad we went. I still won’t make a habit of going out much at night, but future excursions won’t seem so daunting.

[image of a crowded, narrow pedestrianised street. In the background are the windows and doorway of a grey, limestone building. In the foreground are several people with their backs to the camera. They are looking at, and taking photos of, a giant red ant, which seems to be made of paper and a metal frame. Only the head and antennae of the ant are clearly visible.]


[image of the same ant, taken on a different street. This time, the whole ant is visible, as is the wheeled, pedal-powered contraption, including driver, that powers it. Volunteers helping to push it are also visible, as are crowds of onlookers in the background. Also in the background is a car driving slowly, indicating that we have now left the pedestrianised heart of the city centre.]


[image of a giant black spider, again made of paper and a metal frame. The most visible part of the spider are its white eyes, three of which are visible, and it’s white pincers. There are crowds of people in the foreground, partially obscuring the view.]


[image of the side profile of a giant praying mantis. Again, it is made of paper with a metal frame. It’s body is green and its eyes are pink. Visible from this profile is a light shining out of its eye. Again, there are crowds of onlookers watching in wonder and taking photos.]


[image of the same praying mantis as before, but this time from the front. From this view, the full height and size of the creature is apparent. ]

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]

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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