autismmumsdads

Hello Everyone.

I would just like to thank you all for supporting the guest bloggers whilst i was away. I will be resuming my written blogs some time this week so thank you for your patience.

In the meantime i have opened a new page on Facebook to coincide with World Autism Awareness Day – here is the link http://www.facebook.com/AutismMumsandDads PLEASE ‘Like’ my page and help to raise more, much needed Awareness.

Feel free to share what you have done for World Autism Awareness Day below :)

L x

***Guest Blogger***

Todays blog post is by Kate – who you can follow on twitter @kbarnes2430

Hello all, this blog is to fill in whilst holiday fun is going on for Lauren and her family. I enjoy this blog a great deal and am always eager to read the next blog.

I am a primary school teacher, who has done much research into autism and drama and for my dissertation at university I wrote about the topic at length.

So here we go!

Drama can have an amazing impact for those with autism, it allows even the most severe a chance to develop. A trait many of you will be aware of is behavioural difficulties, we cannot simply say no to a child with autism, as they will not understand. For them to understand they need to see a personal link to the issue in hand.

Whilst training I encountered a young boy who was 7 years old, he was struggling with his behaviour and whilst in mainstream school at that moment, if he wasn’t given the appropriate help soon, then he would end up in a special school.

I was allowed to spend time with him, and work with him alongside his TA, I was hit, bitten and shouted at to begin with, but that was to be expected as the boy did not know me well and had not been able to build trust up with me.

Over time this was created, it was at that time, I introduced my two friends, Pip and Pop who were puppets. These parrots created small scenarios where one would say a nasty thing or hit the other, the other parrot would then express the emotion that would be felt when this happened.

Initially this seemed to have no response for the boy, but one day he started a conversation with me, asking if that was the way I felt when he had hit me. I responded with a yes, and he said sorry. The conversation then went on to approach how he would feel if that was done to him. When they can see it in relationship to themselves they often are able to see that what they are doing is wrong.

I’m not saying that puppetry ended the boy from hitting out completely but it did suppress a large amount of it. Puppets are not humans at the end of the day and children often feel they can talk to a puppet because of this, (what they don’t realise is that the puppet is on the end of a humans hand).

I will leave you with one thought which we must always remember, ACCEPT DIFFERENCE NOT INDIFFERENCE…

***Guest Blogger***

Todays guest post is written by Sarah.

Hi! My name is Sarah, I’m 23 and I am an ABA (Applied Behavioural Analysis) tutor working in the East Midlands with different children with Autism. I have a BSc. degree in Applied Psychology and Sociology and this is where my interest in ABA began. I am currently working towards a MSc. in Health Psychology and I intend to mix these disciplines in the future. I have been working as an ABA tutor for the past three years and I trained at Treehouse School, a specialist ABA school for children and young adults with Autism, in London.

So what is ABA? ABA is a science based on Skinner’s Behaviourism in psychology. ABA focuses on observable behaviour and its relationship to the environment, by functionally assessing behaviours we can use the principles of ABA to increase or decrease that behaviour. For more in depth description then please see these pages: http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba and http://en.wikipedia.org/wiki/Applied_behavior_analysis or just ‘Google’ ABA!

So what is a day like in the life of an ABA tutor – well first and foremost it is fun and fulfilling! I work 1:1 with children at all different points on the spectrum – one of the most important things I’ve learnt is that every child on the spectrum is different. I deliver an ABA programme that is set up by a qualified behaviour analyst. So, I think I get to do the most fun part! We teach functional skills in communication, daily living, play, social skills and we also have academic targets. Each programme is tailored to targeting the deficits and strengths of that particular child or young person. ABA is based on positive reinforcement – all programmes begin with establishing motivation – we make ‘work’ fun and we make success very possible. The children are systematically reinforced or rewarded for behaviour we wish to increase, for example waiting their turn in a game, and reinforcement is removed when problem behaviour is exhibited, in this way we aim to decrease this behaviour.

My sessions are different for each of my clients so it would be difficult to describe one – however they are usually fast paced, engaging, fun and usually very silly! I take my own special stock of toys to my sessions and lots of play and experimenting can allow the team to learn what makes that child tick. Each programme has different targets and we take data on the work we do in order to systematically see what is working and what may not be working and fix it.

ABA allows me to make a difference to not only the child’s life but also to their whole family’s lives – that is my main motivation. There is nothing like seeing a child put in so much effort and then begin to communicate spontaneously or use the bathroom independently. Furthermore being a home based tutor means I get some great interaction with families – such an important element of every programme.

This is a very brief description of my work – if you have any questions then please get in contact. My twitter account is @SarahElizGrant – please follow me – I use this to keep in touch with the wider ABA and Autism community and to help with the effort to raise Autism awareness.

Also please feel free to post any comments – any feedback is appreciated – being an ABA tutor also means continuing professional and personal development

Todays guest blog is written by Leigh.

(Please copy and paste for a photo)

My first school photograph sits on the bookcase in my study. I say “school”, but it was nursery school and I was only three! “Awww,” you might say, or maybe “ahhh.” How cute!

But you’re not saying that, are you? Because you can actually see the photo, rather than just assume what it looks like. So you’re probably saying, “Oh…”

I’m often asked, ‘at what age did you first know you were different?’ and I’ve always said, ‘about three’ but without knowing how I knew that. Now – looking at this photo – I’ve just realised how I knew: the occasion of that photo is the first time I can remember not ‘fitting in’.

It’s not my earliest memory, but it’s a very clear memory: one by one, each child was summoned to the photographer’s chair, handed the puppet, told to smile, and had his or her picture taken – no doubt for the pleasure of our parents, and the profit of everyone else involved. I can clearly remember watching the other children just go, but knowing I didn’t want to, and not understanding why I had to.

Barring two snapshots of me as a baby (taken by a family friend), this photograph is also the earliest picture of me, so this occasion was the first time I’d been aware of being photographed. I’d never seen the man before, or his strange equipment, or the bright light, or the flash screen, or the flash… When I say “I couldn’t see why I had to have my photo taken” I wasn’t stubborn; I was scared, and terribly anxious. But at the age of three I couldn’t begin to explain that, regardless of how simple the situation seemed to my teachers, I DIDN’T WANT TO DO IT. As I write this, it brings tears to my eyes to remember that fear and anxiety. But they didn’t understand why I was scared, and so my fear was considered irrational. Invalid.

They tried cajoling and persuading me, but I wouldn’t go. I remember being left until last, because I was being so “difficult”, and in the end I was physically carried to the chair, sat, and the toy was thrust into my arms. And with the teacher’s forcing hand still in shot… click. FLASH.

The expression on my face says it all.

Afterwards, I cried. I bawled and wailed. I remember little about that part, except restraining fingers digging painfully into my arms. I was three, for God’s sake. What was the point? They put me through that… for a photo?

So, that was my first memory of being ‘not like the other kids’ – when I wouldn’t go to the chair and have my photograph taken like the other kids. And, no, I didn’t just want the attention. I wanted them to leave me the hell alone.

I’m proud of that picture now; it represents the intervening years of struggle and striving for My Self. It represents a lifetime of being told I was Difficult (amongst other things) when really I was just Different. It took another thirty-seven years, and a chartered clinical psychiatrist, to prove the point; but I’ve known for a long time I was different, yeah, even when I was three.

Follow Leigh on twitter http://twitter.com/spectrum_life

Or subscribe to her blog http://www.lifeonthespectrum.net/blog/

***Guest Blogger***

Todays guest post is from Kirsten and here is her website – please visit it;

http://runningforautism.com

I will never forget the day I first introduced my younger son James to solids. I had been breastfeeding him exclusively for four months, and I was excited about him reaching this little milestone. I had no reason to think it wouldn’t go well: two years previously, James’ big brother George had taken to solids like a bull takes to a china shop. Enthusiastically but with a lot of mess.

I sat James in his high chair and his eyes widened with surprise, which I suppose is understandable when you’re four months old and thought you were going to be suckling at Mommy’s breast like always. I then set up the video camera to record this momentous occasion, and finally, I was ready to give James his first solid meal.

As the spoon of rice cereal approached his little face, he opened his mouth obligingly, and then closed it at just the right time. I regarded him fondly as he worked his jaw muscles, thinking, “This kid’s a natural.”

A few seconds later, my precious little angel pursed his tiny lips, and without any warning whatsoever, he went “Phtooo!” and a splattering of rice cereal hit me square in the face.

Fast forward six years, and some things have not changed. The boys are older, of course. Instead of parenting a baby and a toddler, I am now dealing with two school-age children who cannot be strapped into high chairs, no matter how badly I may want to keep them in the same place. James, thank goodness, no longer spits his food out at me. But the passage of time has not changed the fact that there is always a food war being waged at my house, albeit a war that includes the occasional unspoken peace treaty.

The war now includes not one, but two children.

James is still as picky as he ever was, but sometimes it is not clear whether he is not eating because he doesn’t like the food, or because he just wants to be stubborn. We have the most ridiculous conversations sometimes. Like this one:

Me: James, eat your dinner.
James: I don’t like spaghetti.
Me: James, you asked for spaghetti.
James: I still liked it then.
Me: How can you like something, and then not like it twenty minutes later?
James (ominously): A lot can happen in twenty minutes.

While all of this is going on, George is sitting nearby, mutely staring at his food as if it has said something very offensive. George, I know, likes spaghetti. It’s on his list of Known Foods. If you try to give him something that’s not on his list of Known Foods, you’re not only asking for trouble, you’re knocking down its door and forcibly dragging it out with you.

Even the Known Foods can present a problem. George, being a child with autism, is very particular about the way things are done. He dislikes change, and if things aren’t done just so, he gets upset.

So as he sits there staring at his spaghetti, I know that it could be anything. It was cooked for ten seconds too long. There’s not enough sauce. The sauce has a single smidgeon of onion in it that no-one else would even notice. The spaghetti strands weren’t cut into the right-size pieces.

Who knew that cooking spaghetti could be so complicated? Getting spaghetti right according to George’s standards is about as simple as solving Rubik’s Cube (and anyone who knows how to solve Rubik’s Cube, shut up!)

I have tried a variety of strategies to get my kids to eat.

I have encouraged. You can do it. I know you can do it!

I have threatened. If you don’t eat your dinner you’re not getting any ice cream and you’ll have to watch while your Dad eats his!

I have used reason. If you eat your veggies, you will grow up to be big and strong. If you don’t, you won’t get any muscles and you’ll be all floppy like a rag doll.

I have completely abandoned all dignity and thrown myself on my knees, begging. PLEASE eat your dinner. PLEEEAAAASE!!! Otherwise you’ll drive Mommy crazy and that’s a really short trip!

My current strategy is to try getting them involved in the preparation of their food. The purpose of this is to get (the little blighters to work for the privilege of not eating educate) my children on the importance of healthy food choices and encourage them through empowerment. And if they still don’t eat their food, I remain calm. I tell them that it is their choice whether or not to eat their food, but if they choose not to eat, they shouldn’t expect anything else until the next mealtime. If they do eat, they will get some kind of treat. This hopefully teaches them that (if they don’t eat, they starve) if they eat a balanced meal, there will be positive consequences.

I am starting to meet with some success, but the progress is slow and painful, and sometimes grinds to a halt completely.

The war is still being waged, but I am at least beginning to win the odd battle. I am hopeful that maybe – just maybe – I will not still be trying to bribe my kids to eat when they’re big hairy teenagers.

***Guest Blogger***

Todays guest post is written by Anita & you can follow her on Twitter @BennettAnita

In our case an early diagnosis was not enough because of where we live, so maybe I should have called it ‘the postcode lottery for education and support for children with autism’! Had we lived the other side of the border between the city and the county, or even in any of the neighbouring counties our lives could be very different by now!

Sean was diagnosed with autism at 2 & 1/2, brilliant you may think, an early diagnosis leads to early intervention, support before starting school, support from day one at school, a statement if needed, etc. Well in some parts of the country it does – a recent chat with a friend about a 3 year old living in the county next door, statemented before starting school, full time 1:1, choice of mainstream or specialist setting, etc led me to wonder if it was worth moving to our in laws for 6 months or so!! One special school I visited a few weeks ago had one 5 year old, the rest of the primary class were at least 8 – this is due to the highly inclusive policy of the LA we live in.

We missed out on portage after a reshuffle of teams meant our referral slipped through the net; the inclusion support who went into school refused to see him at home as we live in the city and his school is in the county (the border is 2 streets away and his school is as close as our catchment school!); MALT turned us down for help at home from CAMHS as he didn’t self harm; eventually after an emotional outburst at a portage-run course we were given emergency portage help – 6 sessions, then nothing again; an 18 month fight for respite; being told that at almost 4 he was ‘too young’ to be assessed for a statement; the list just goes on and on.

I am well aware that these are difficulties faced by many, many parents of autistic children, but I also know how much easier some parents find accessing this help, it just seems to depend on your postcode, and how much and how loud you shout! Most of the parents at Sean’s school think it is my choice for him to be there, but it isn’t. We are just a month away from the knowing the outcome of his statutory assessment and finding out if we do actually get to choose which school he goes to.

Anita

***Guest Blogger***

I am away for the week with my family so have asked for Guest bloggers to write a post relating to Autism in my absence. The wording/presentation of the blog is that of the Guest Blogger and not mine. I really hope you enjoy these blog posts & thank you all for reading in advance. (Please see end of blog for info on todays blogger)

L x

The phone rings at 10 to 4 on Friday. My younger boy Ned answers it. “It’s Alex’s bus!” Ned says. “It’s downstairs!”

Shouldn’t be. Alex (13 and autistic) catches a different bus from his school and that takes him to an afterschool program about 10 blocks away. Some 13-year-olds could just walk those 10 blocks, but Alex can’t. From the program, another bus picks him up and brings him home at about 5 o’clock.

“Tell them I’ll be right there!” I say. “They’re not supposed to be here!”

When I get downstairs there the yellow bus sits, cars zipping down Fifth Avenue and ignoring her blinking red flashers. “I dunno,” the bus driver says. “They just brought all four kids out to us together…”

I call Alex’s teacher, who’s there almost two hours after school has ended. “Thank goodness you were home,” she says. “On behalf of the entire school staff, I want to apologize.” I call the afterschool program to see if they were open and I didn’t miss some important flyer. The lady at the afterschool program utters the words that many who work with the autistic say when they hear “wrong bus”:

“Oh my god!”

Alex’s school has been getting this busing arrangement right for weeks. What happened? I don’t even think of asking Alex as he turns on his iPad, claps on his headphones and begins to watch Elmo. “What happened?” I ask the unit teacher a few days later, in the e-mail she requested. “Thanks for your understanding in the matter and I assure you that this will not happen again,” she writes back. Later, a teacher from Alex’s school calls; she was in charge of busing on Friday. She apologizes over and over.

I trust them – trust them more, I often think, than I’ll trust other people who will care for Alex in one way or another before I die. Slip-ups do happen. It was only an hour and technically it wasn’t even the “wrong” bus, but it does open a dark door.

“Ned,” I ask, “what would you have done if I hadn’t been home?”

“I would have gone downstairs and brought him up,” he says. Luxury, I admit, to have a back-up like that.

The dark door opens on stories of kids like Alex left on a bus long after hours, stories of kids who pinball down sidewalks while state police radio each other and strangers look on wondering why in hell someone doesn’t corral these people. Once Jill was on the subway with Alex when he sprinted to another seat at the other end of the car. Imagine if he hadn’t bolted toward a seat but through a closing door of the subway car? Imagine the glimpse of his back down the platform while the subway door slid shut in Jill’s face, trapping her in front of the window as Alex vanished up the stairs and into the endless streets.

I have no idea if my 13-year-old boy could get off the school bus by himself, walk through an apartment building lobby, press an elevator button, and come home. I like to think he could, but I don’t have that luxury.

Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon).
He maintains a blog about his family at jeffslife.tripod.com/ alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Autism Society news blog, and An Anthology of Disability Literature (available on Amazon).
He is on LinkedIn and Facebook under “Jeff Stimpson” and Twitter under “Jeffslife.

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