autismmumsdads

Archive for the ‘Behaviour’ Category

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

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.

A new drama series began on Sky 1 last night called Touch – it stars Kiefer Sutherland who plays the single Dad of a mute 11 year old with Autism – I won’t give much away as I know lots haven’t been able to watch it yet.

It really highlighted the difficulty of communication for a person with Autism and I could relate to the desperation of the single Dad to be able to communicate some way with his son.

A is only very young yet but I do crave the moment when he can speak to me and tell me things – even small things like what he’s done that day or what kind of drink he would like without being prompted by choices.
I feel I’m lucky compared to others that A will copy some words, some times he even tells me he loves me – but he’s just copying the words as I say them – so I know that will be a very proud moment when he finally says that to me spontaneously.

Also the young man in the show wouldn’t allow anyone to touch him not even his Dad which again I could relate with.
Some Autistic children are so sensitive to the slightest touch that its been known it can even cause them pain – depending where is it, I can touch A, but definitely not his head & most times I must warn him before hand.
To want to touch your child Is one of the most natural reactions for a parent – to cuddle them when they are upset for comfort – most parents cannot do this – I certainly try to cuddle A but I get pushed away. I sometimes ask for a ‘squeeze’ and he lays his head on my chest for a few seconds with his body as far away as possible.

Touch also includes, dressing and changing which has always been a massive struggle for us with lots of distraction involved to get it done – sometimes I think if we where naturist’s it would make life much easier (only joking)

I really hope this new show can help highlight awareness of Autism and the struggles that we all face on a daily basis – I did think the 1st show was very emotional in parts but I enjoyed it and have high expectations for the follow up episodes.

Please watch it if you get a chance – Tuesdays 9pm Sky1.

As always comments are welcome below.

L x

We are going on Holiday soon – to a holiday park in Lincolnshire – part of me can’t wait to get away and the other part is dreading it.

How many people can say that about a holiday?

Well quite a lot actually – especially if your child has Autism.

The change can have an adverse affect, causing meltdowns, un-cooperation, upset & lots of distress. Some parents have to prepare their children for a holiday for weeks in advance with constant reminders and visual supports.
Most children can’t wait to go on holiday – a new place to play, make friends, go swimming, go on the beach etc – but for some autistic children its just another thing to become anxious about – something they don’t know, something they have no control over and the fact they have social and communication difficulties makes the above activities virtually impossible.

With A, he’s in the very early stages of PECS and if we show him visuals about holiday he wouldn’t have a clue what we where on about – its hard to prepare him for things such as a holiday – especially since he is non-verbal so we aren’t entirely sure if anything we are saying he is understanding.

We’ve been to this holiday park before and its difficult to take A to the entertainment and go for a meal etc most of our time is spent in the caravan – A likes it inside there, he can watch his favourite shows and explore without restrictions – its hard to do this outside as he’s no sense of danger so he’s restricted to his pram a lot of the time – and we must provide him with distractions to keep him happy. He loves feeding the ducks though, which is brilliant as they have a lake.

Going on holiday isn’t necessarily a break for us as it creates more work, making sure A is happy constantly through the day, but we do enjoy it and I really hope A does this time also – but we have to wait until the holidays over to be able to answer that question.

We are restricted to where we can go at the moment, I don’t like going to far with A in the likely event he may not settle and so we would need to come home. So going abroad sadly isn’t an option yet – the waiting at the airport, the plane journey, the heat etc would be to much for A, he would be over stimulated, agitated & scared. – maybe one day 🙂

Please as always comment below on your holiday experiences.

***I will be away between the dates of 23rd March – 30th March – so I am looking for guest bloggers, basically if your interested, contact me @ laurencathcart@hotmail.co.uk with an Autism related post that I will publish on one of those days & if you have a webpage/twitter/facebook I can include your details. I already have some people interested, and blogs ready, so please contact me ASAP***

L x


%d bloggers like this: