iPod and iPhone apps for special education

A useful link provided by Eric Saliers of Speech-Language Pathology Sharing.

He also writes about the iPad. I was really excited when I saw this new device from Apple as I can see it has potential to become a really useful communication aid for Archie. Both through AAC programs such as Proloquo2go and through typing. There’s also Alexicom Tech; an internet based AAC system. It apparently works offline as well.

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Coping with the general public

This has been on my mind a lot this weekend. I promised Archie last week that on Friday after school I would take him to the newsagents to buy jelly babies. Although he has severe learning disabilities he understands days and jelly babies  so come Friday he was rather keen.

The shop is only around the corner, I go there four or five times a week, although usually alone.  I thought about taking his Crelling harness as it leaves me with both hands free if I use it, but he has been so good recently I decided it wasn’t necessary- and anyway he was keen to leave and was kicking off and I couldn’t find it. So off we set. On the way he spotted a tree had been cut down and said ‘nee narn’ (tree gone I presume) which I was mightily impressed by – two word approximations are brand new. We reached the newagents without incident. Some nice walking.

Once inside I picked up some jelly babies and Archie grabbed a huge Twix. I made him swap it for a smaller one which triggered some shouting as he thought I was saying he couldn’t have the Twix at all. Soon sorted and nothing too major. We went to pay. At this stage Archie spotted the room behind the till and made a dash for it. This sort of reaction is utterly impulsive/compulsive and he has very little control over it. I grabbed him before he’d taken more than a stride and pulled him back to the till. I told him that it was not Archie’s room and he needed to wait while we paid. I kept hold of him so he couldn’t make a leap and he waited quietly occasionally making an ‘uh uh’ sound. At this point it is worth revisiting the old days of shop visits. Until very recently he could not wait at all. Literally not a second. I would have to throw money at shopkeepers, and if I prevented him running into a backroom we’d end up with a full on down on the floor screaming headbanging tantrum. Now although he can’t stop the initial compulsion, once stopped he is usually very good, as he was on Friday.

And the response from the shopkeeper? He well and truly got the hump. He glared at Archie in a ‘I’m watching you boy’ type way. Archie of course ignored him, so he carried on glaring. The customer behind me started saying ‘Oh dear, oh dear’. I presume the shopkeeper wanted an apology from him. Not so easy when you can’t talk.  I said ‘he can’t talk so he doesn’t understand’ – I usually say this, because most people realise that if a 10 year old can’t talk something is going on and combined with the language I use when speaking to him and any signing or PECS – people work it out but the glaring continued and didn’t let up. The shopkeeper ruined my rather special ‘nee narn’ moment, but he also lost my custom. I won’t go in there again.

I’ve noticed this happening rather a lot recently. Archie engages in  some minor social transgression (standing next to, rather than behind someone is a queue is a common one – I allow him because if he can see the front he waits nicely, if he’s stood behind it’s all arms and legs flying and lots of screaming) and someone gets the hump. He also gets challenged a lot directly; a pointed, huffy “excuse me” for example. Of course he fails to reply which only increases the harrumphing and lemon sucking. I’m never sure how to respond to this. I am used to the inbreaths, muttering and teeth sucking that can accompany a full blown meltdown (and will happily don the crocodile skin and ignore it, people are too scared to approach anyway) but I’m not very used to him being told off when he is (for him) being exceptionally good. I suppose that’s the problem. He does look entirely -dreadful word- “normal” and joe public seems unable to understand that someone who looks normal can have a severe learning disability and severe autism. Check out the photoblog – you’ll struggle to spot which brother is severely autistic. And explanations don’t seem to result in any acceptance by the other person. You just get told ‘well he shouldn’t do that’. Oh OK then.

After eight years in the autism game I’ve sort of come to the conclusion that there’s little point trying to educate people – they either get it or they don’t but I do need to come up with some way of dealing with these complaints when he is behaving well. I don’t really want to do a big negative ‘he’s severely learning disabled’ routine as I recently discovered Archie knows he is autistic and so I don’t want to talk about his autism and problems in a negative way in front of him. I’m not really keen on putting him in a “I have autism t-shirt” although I can understand why people do (if it interests you there’s a whole load to choose from here, some stroppier than others) but I’m not averse to something more subtle. I’ve had an ‘I have autism please be patient’ badge from Treating Autism before. BIBIC do individual plastic identity cards whilst the NAS do information cards. I’m never quite sure how I could manage to hand out an information card whilst holding onto Archie, maybe it is time to pin a BIBIC identity card to him.

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Horse Boy Camps

I’m really pleased to say that horse boy camps are getting really popular. They are running a lot of camps this year. Details in the WorldWild newsletter. Keep up to date by signing up to receive the newsletter at the WorldWild website.

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Skiing4all

I’ve just come across this;  skiing4all. Run by Anna Wegner, a British Psychologist and Austrian qualified ski instructor she offers skiing programs for individuals with cognitive disabilities. These can be combined with activities such as pony riding and swimming. Looks well worth checking out. They mention using a ‘PECS on the slopes’ system which sounds intriguing.

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Carly’s voice

My first introduction to the idea that people with apparently severe autism could learn to type came from reading Lucy’s Story: Autism and Other Adventures when my son was five years old. Since then I’ve come across Tito Mukhopadhyay and then last year Carly Fleischmann.

My personal view is that there are probably many people with apparently severe autism who could learn to type in this way. The difficulty is finding methods to teach literacy or finding a way to shut off compulsions which seem to get in the way of everything.

On her blog Carly says “I think people get a lot of their information from so-called experts but I think what happens is that experts can’t give an explanation to certain questions. How can you explain something you have not lived or if you don’t know what it’s like to have it? If a horse is sick, you don’t ask a fish what’s wrong with the horse. You go right to the horse’s mouth.”  She makes a good point. The reality is that this particular group – those who are apparently severely autistic and who are non-verbal – remain almost unstudied. Research is almost entirely carried out on those who are apparently higher functioning. Very little is known about the non-verbal group at all and many of the comments made by those in this group who do have a voice  (such as Lucy, and Tito and Carly) has been ignored. If you look at the writings of all those with non-verbal autism  they share a lot of similarities  – in particular describing difficulties in movement and in controlling movement. Yet it is rare that this is taken into account when considering behaviours or teaching methods.

When I first read Lucy Blackman’s book I felt I was at last able to find out – from the horses mouth- a little of what it is like to live in my son’s world. It did change the way I responded to him, and it did alter my interpretation of his behaviours. It’s a book I re-read every now and then (along with Autism and the Myth of the Person Alone (Qualitative Studies in Psychology) to remind myself of  the view from his world.

If you haven’t already do watch the videos on Carly’s website. They provide a fascinating insight into non-verbal autism.

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MouseTrial

I’ve just come across MouseTrial. It’s computer software that aims to increase vocabulary. Can be used for fun or as part of an ABA program.

We’re not running any sort of program at the moment, but my son has a slight (understatement) obsession with various household objects and would probably really enjoy this. I think it’s something that should be at the right levels as well. I’ll try him tonight. English accents too which is a bonus for those of us in England. It costs $29 or $10 for individuals modules and you can play online or via a CD. You can try it for free.

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RDI consultant training in UK

Just a really quick post as I have to dash off to work. I know a lot of people have been waiting for this for a long time. It is now possible to undertake training to become an RDI consultant in the UK. More information on the RDI connect blog.

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Holland, Beirut & Holland Schmolland

A video below (another montage) using some words taken from Welcome to Holland, Welcome to Beirut and Holland Schmolland. I’m personally not really into a lot of the prose or poetry that gets passed around about disability. It can be a bit saccharine. Holland Schmolland makes me laugh though.

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When I first made the video I wrote the words below. Reflecting a little, I think challenging can be really very difficult indeed, and I don’t want to downplay how difficult challenging can be. But it isn’t all bad and I think it helps in appreciating the good things in life:

When you have a child with a disability, well meaning people tend to pass on stories and poetry. Reactions to being given these vary from gratitude and recognition to outright anger. They’re not always helpful.

If you have a child with autism you will no doubt at some stage be given Welcome to Holland by Emily Perl Kingsley, Welcome to Beirut by Susan F. Rzucidlo and Holland, Schmolland by Laura Krueger Crawford. These vary in style, and I don’t really identify 100% with any of them but all three share something in common. They say that although there’s an initial shock and although life can remain challenging it also becomes good again.

In our case life has become very good. My son is 10 now, has one word and is always going to be severely autistic. Theres no fairytale ending for him. However, he has always been in the words of Holland, Schmolland ‘a fun loving affectionate boy’. His life is full and active and now we have built up a good support network a lot of fun for all of us. Challenging? Certainly. But theres nothing wrong with that. Some of the best days of my life have occurred because my son has severe autism, rather than despite it. Hes introduced me to a world I didn’t even know existed.

We no longer fear his autism and we no longer see it as a life sentence (although it will certainly be lifelong). His life is not a tragedy or a second class existence. It is a great life. With only one chance at life you do have to take it and fill it full of experiences. There’s no reason for disability to alter that (and therein lies the reason that support and help for families is so essential – in the case of a child with severe autism is really does take a village).

In this video I’ve taken bits from Welcome to Holland, and Welcome to Beirut and Holland Schmolland, so none of the text is mine.

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The Center for AAC and Autism

Sorry I can’t really review The Center for AAC and Autism yet as I haven’t had a chance to look at it. I’ve glanced long enough to get very excited about how interesting it looks. I remain very interested in how AAC can be used to help those who remain non-verbal and feel it’s something we haven’t really yet got to grips with using as well as we should be yet.

My son is pretty flexible in the way he communicates these days, he’ll use photos, pictures on the wall, dragging, reference objects, PECS, the few signs he has, anything really. He recently produced his first word combination that just about represented a sentence.  Non verbal of course, but there to be encouraged. Recently a lot of people have commented on how much he is trying to communicate and I feel we should be doing more to help him.

I was reminded of this yesterday. Yesterday was a Thursday. On Thursdays my Dad usually comes in and makes buckwheat pancakes for all the kids. This is a longstanding tradition dating from the time when number 1 son didn’t eat anything. However, Grandad had things to do yesterday so didn’t come in and I started to cook a big family meal of  spag bol instead. A few years ago this would have been met my much screaming I guess. But instead number 1 son appeared next to me with a pancakes PECS symbol in his had. He then pointed at the pan I was using. I don’t think he really wanted pancakes; he actually prefers spag bol these days, he wasn’t using his PECS symbol to request. He was telling me that I’d mixed up my days and it was pancake day. I just explained that no, Grandad wasn’t coming in today and he was quite happy. No complaint, accepted the explanation and off he went.

Edited to add: I’ve had a look in further detail at the website now. They use an approach called LAMP – Language Aquisition Through Motor Planning – this interests me a lot as it takes into account of the motor issues that  I believe many children with severe autism have. Something that many people forget or underestimate. Unfortunately it looks a little difficult to access training from the UK. I will try and contact the center though to find out. They also use an AAC device that looks absolutely fantastic, but it is thousands of dollars. It’s probably a fair cost given the limited market and costs in designing the device, but it just makes it unaffordable for most.  They do give advice on funding sources (for those in the US), and there are UK funders available (weirdly social service can be a resource for this sort of thing) but I personally would be concerned about spending that much on a device -even with funding-  without knowing in advance whether it was going to work for us.

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Cowboy and Wills

I’ve become very interested in animal assisted therapies recently. Partly because I’ve been getting quite involved in horse riding in general and  in equine therapy specifically, but I’ve also been surprised by the way being around dogs affects my son.  He’s not a great animal lover. He likes horse riding, but he finds fur difficult. I was therefore staggered to find him very interested, indeed fascinated by my friend’s guide dog. My friend’s dog is very calm which I think helps.

If this is something that interests you, you might be interested in the book Cowboy and Wills by Marni Wander. Amazon is giving a publication date of July, but you can find out more from the myspace or facebook page. I have been fortunate enough to have received a copy already and was interested to find that Cowboy is, like my friend’s guide dog, a golden retriever. Wills is much higher functioning that my son, but the changes described are similar to those I observed in my son around my friend’s dog. A lovely heartwarming story.

This might be (time permitting) the year we add to our family with a dog……..

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