This Is My Child

Mumsnet is launching a new campaign today called This Is My Child. There have already been a couple of national media articles about it in the Guardian and on the BBC website. I was asked to write a guest blog post about going out with Archie which can be read here.

The aim of the campaign is to challenge negative attitudes towards those with disabilities and bust a few myths (such as autism is just an excuse for poor behaviour). Being run by Mumsnet it has a chance of reaching a wide audience and I hope educates a few, or even many. In the early days and even sometimes now, being surrounded by a sympathetic general public may have saved my blood pressure or tears on more than one occasion.

This is one aspect of an awareness campaign. Over the years my own drive to raise awareness has changed a little. Initially I just wanted people to know and to understand what life was like with autism, and to cut us all some slack. Now it’s a little different. I want people to understand that Archie is someone worth knowing. He has a great sense of humour (yep, despite that severe autism). He’s a thrill seeker (roller coasters, and he surfs much bigger waves than me) and he’s intelligent. Faced with the behaviour of someone with severe autism this last point can be hard to understand – to be fair it took me a long time to realise just how clever Archie is. His behaviour does hide what is going on inside, although with the talker and the computer it’s getting easier for him to demonstrate that there is quite a lot going on in there. The publication of books such as The Reason I Jump help spread this message of unrecognised intelligence. As previously mentioned a writer/director friend and I have developed a film project that  tells the story of a young person, not Archie but not unlike him and his blossoming into living a full life where his abilities are recognised and valued.  The script has been read (and loved) by some well known and talented actors who are keen to come on board. Like many film projects funding is an issue, so, if you fancy funding a film please get in touch.

A general recognition of Archie and others like him, having lives worth living is perhaps my biggest wish for now. If people approached those with disabilities with this understanding things might change. The Mumsent This Is My Child campaign is a step in the right direction.

Holidays

A short blogging break has turned into a long one; but we have driven the length of the country (twice) and been to Northern Ireland and back in the process.

I’ve written before about our trips to Northern Ireland, and the screaming and difficulties that can accompany them. This trip was different. Archie was chilled, and despite us being in stop-start traffic from south of Bristol to north of Liverpool he remained pretty chilled. Weirdly there was another little shout at Birmingham. He has issues with Birmingham. The journey from one end of the country took two days with a different boat than usual – this one complete with a cabin. This ended up being a godsend, Archie just sat and looked out the window at the approaching landmass of Ireland the whole crossing.

Usually we head straight up to the north coast to the beaches, but this time we detoured via Belfast for a week. Middle-son was doing a second stint in Priscilla Queen of the Desert at the Grand Opera House (a fabulous show by the way, if you get a chance to see it during its current UK tour grab the opportunity; you won’t be disappointed) and so we stayed in Belfast for a week. The city has changed a lot since I first visited a frightening number of years ago and it was a week of football in the park, the Titanic exhibition and a lot of drives in grandad’s car for Archie.

The second week we headed up to our usual spot on the north coast where we made our usual regular visits to the largely empty beaches but with some new experiences. Archie is keen to get involved in everything these days, including trying out a roller coaster at the institution that is Barry’s (it had loop the loops and everything, I screamed the entire way round).

If you had told me two years ago, by the way, that I would ever go on a roller coaster with Archie I would never have believed you. He also took part in pony trekking and roller water balls. I’ll add some photos below.

Perhaps the most exciting part of our time on the north coast was finding a place for Archie to go surfing in Portrush. Before leaving England I contacted Ricky who runs Alive Surf School out of Portrush to see whether they would be able to take Archie out for a tandem surf. Ricky emailed back and said that they had recently started an autism program, but this had been with those with more language, they hadn’t yet tried any tandem surfing, but were keen to move into working with those like Archie. So we arranged that Ricky would borrow a paddle board and Archie would have a surf. I booked the younger boys in for a lesson at the same time.

The day of the lesson I messed up a bit. I had forgotten to explain to Archie that we were going to a new beach, and he thought we were heading for a beach that he has been obsessively studying on google maps for the last six months. He therefore wasn’t very happy when we took the ‘wrong’ turning. Had I been more awake I could have prevented the misunderstanding, or given him a quick drive to the first beach, but by the time I realised what was going on it was a bit late.

Anyhow Archie was teamed up with Hanno from Alive and off they went. Surfing soon worked it’s magic and Archie relaxed and forgot about the ‘wrong’ beach. The waves were a perfect size for me (so clean and the water was so clear), but a little small for Archie. He had a few sprints around the beach inbetween catching waves. Not being used to this behaviour Hanno was a bit concerned that he might be scared, but I explained this was fairly typical behaviour for Archie and standing pointing at the board usually worked to bring him back. As the waves were smallish they decided to go for a paddle. ‘I like to train’ said Hanno. Good job; Archie was delighted to find that Hanno went wherever he pointed and they ended up a small speck in the distance checking out rocks and a nearby island.

While they disappeared off into the distance I talked to Pauline who has been responsible for finding funding to run the autism events. Well we talked and surfed, both latecomers to surfing the conditions were ideal. Pauline explained that she had become inspired to start seeking funding after seeing videos on YouTube including some of Archie. Because I’m always referring to them I’ve just created a page of surfing videos by the way. This was really rewarding to hear, after all the main reason I talk incessantly on here about surfing is to encourage others to try it out. To hear that people are being encouraged to give it a go makes it all worthwhile. Although it means I won’t be shutting up about surfing any time soon I do hope it brings others the peace it has brought Archie.

Anyway after Hanno delivered a relaxed Archie back to the beach, we managed to get a shot of them both.

We met up with Ricky the next day and talked about getting going with tandem surfing (my main bit of advice really being that it has to be an individual approach and may well be different for each child). Surfers, as a whole seem very good at this. They are very good at accepting people for who they are and they usually have a deep love of the waves and the sea that they’re happy to share. Certainly we found the guys at Alive just as welcoming as our friends at Discovery. Richard often describes surfers (along with the teachers at Archie’s school) as ‘a different breed’ and I think they are. Anyhow we are delighted to have found a surf school for Archie up in Portrush and will be back next year. And of course we highly recommend them. I should also add that the north coast is a wonderful place to surf. The beaches are so empty – even in August – and it gets good waves, with a wide choice of surfing beaches. A very undiscovered part of the UK.

Back in Devon we had a surf yesterday. The first one in ages (we’ve either been busy or it’s been flat). The surf was fantastic; big waves and Archie sat out the back with the big boys – local coaches and lifeguards he knows – while I caught some closer to shore. Surfers are very good at ‘doing inclusion’.

To finish; a gallery of Ireland photos, it really was a great holiday. The best we’ve had for a long time. Having an on-the-whole-chilled-and-laid-back-Archie made the whole thing much easier than in previous years. Regular holidays may be becoming a possibility.

Titanic

Footy

Mount Stewart

Best crips in the world

Priscilla Queen of the Desert

Grand Opera House

Pony trekking

We’ve found some surf!

Ominous sky

North coast

Surfing

Louis catches a wave

Beach brothers

Dodgems at Barry’s

Huge slide

Balls

Changed his mind

Quiet time

Empty beaches

Catch!

Head, shoulders, knees and toes

 

Archie has always been good a learning nouns. When he was two, and saw his first speech and language therapist she devised a little posting game. We made a postbox out of a shoe box and Archie would post pictures through the slot with me saying the name as he did. This then progressed to him having to choose the correct picture from a selection to post. He loved this game and quickly learned hundreds of nouns in this way (verbs were a different matter).

The one exception to this has been body parts. Head, eyes, mouth, nose, hands, feet, legs and arms were easily mastered, but everything else has been a bit of a struggle. Even now if I ask Archie to show me his chest he’ll point to his back, if I ask to be shown an elbow he might point to his shoulder or his tummy. I suppose heads are more discrete and more obvious that elbows which don’t really have an ending or a beginning, but I have wondered for a while whether there has been something additional causing problems. I have read pretty much everything I can find written by people with non-verbal autism and descriptions of difficulties of being aware of where a body is in space are common. It is well worth reading Autism and the Myth of the Person Alone anyway, but in Lucy Blackman’s chapter, Reflections on Language, she writes: I deduce that in childhood I had real problems in knowing exactly where my connectional limbs and trunk were, where they would move to next, and even more frighteningly, where they had last been positioned. Naoki Higashida in The Reason I Jump says: In my gym class, the teacher tells me to do things like ‘Stretch your arms’ and ‘Bend your knees!’ But I don’t always know what my arms and legs are up to, not exactly. For me, I have no clear sensation of where my arms and legs are attached, or how to make them do what I’m telling them to do. It’s as if my limbs are a mermaid’s rubbery tail. Again in Autism and the Myth of the Person Alone, Naoko says: I could not point at objects for many reasons. The most important reason is that I had very little sensation of my body. So to learn the techniques of moving my right hand needed control over the ball and socket joint of the shoulder and then the hinge joint of my elbow and finally fold the other fingers and keep the point finger out. 

These accounts act as a reminder to me that when Archie is struggling to learn vocabulary it may be because he is experiencing the world and his position in it in a way that is completely alien to me.

Facilitated Communication

Many of those currently reading The Reason I Jump may not be aware that Naoki learned to type using a controversial method known as facilitated communication. In common with many of those with severe autism who type independently he needed a period of physical support. He describes the process by which he learned to write and point independently, and why he needed this support in this mini lecture. His is an increasingly common story, and as the word spreads and more people try this form of communication then we are likely to come across others saying the same thing.

The official (and negative) view of faciliated communication can be found here or on Ben Goldacre’s Bad Science blog. My own view is that we shouldn’t be throwing the baby out with the bathwater and the people who now type independently and who have said they needed a period of physical support to get to that stage should not be ignored. They have worked hard to develop their voice and we should be listening to them. There is a balance to be found between providing necessary support and working towards independence. I do believe that working towards increasing independence is important because frankly, many discount a voice that is not fully independent.

I was reading The Reason I Jump at breakfast this morning and this passage jumped out at me: I think the reason why some kids with autism try to get hold of an object by ‘borrowing’ someone else’s hand is that they can’t tell how far they need to extend their own arms to reach the object. They’re not too sure how to actually grab the object either, because we have problems perceiving and gauging distances. This was particularly relevant this morning because an hour earlier this article about Watson Dollar finding a way to communicate in his twenties had popped up on my Facebook newsfeed. It includes the following passage: Watson initially found it easier to grab his mom’s hand and guide her outstretched finger to type words rather than extend his own. He doesn’t do that much anymore but still prefers to clutch her hand while he types with his own finger. A heartwarming video of Watson can be seen here on the USA Today  website together which clearly shows his method of clutching his mother’s hand.

In Archie’s case he finds typing difficult, he finds language difficult and he finds literacy difficult.  A huge advantage of the Vantage Lite for us is that it’s easy for him to use and he can use it independently. I do automatically tend to demonstrate new words to him hand over hand (I still teach a lot of things hand over hand), but after one or two demonstrations he can access that word independently. This independent use means that he is believed, and with reference to my last post is able to demonstrate competence. As he becomes more able to communicate and as his expressive language develops I fully intend to introduce him to typing via the iPad as well. If he needs some physical support to get going I won’t hesitate to offer it. The photograph below shows some of Archie’s recent writing. Whilst he is not using writing to communicate he can now write his name without support, but it has taken many years of hand over hand practice for him to be able to produce this independently. It would perhaps be more surprising if support was not needed.

I Write So I Am Alive

A couple of further links for those interested in Naoki Higashida after my last post.

(1) An article in today’s Guardian by David Mitchell: Learning to live with my son’s autism. Although, as always in these articles there are some areas where my view differs a little it’s a powerful piece of writing, with of course many shared moments. This is something fairly typical, when meeting parents of children with special needs you find that although you might be virtual strangers your lives have so many shared moments you’re practically family.

(2) A link to video about Naoki Higashida by the Facilitated Communication Institute of Syracuse University, I write so I am alive. (You need to scroll down, although they’re all worth watching). Thank you Lisa from Aut2Communicate for the link. On watching the video at first I thought that Naoki was very much more organised than Archie, for example he was catching a ball and appeared calm and pretty much in control of his actions. Then Naoki started running and jumping, and hitting and biting himself and he looked very much more like Archie. Something I have noticed very recently is that as Archie progresses with the talker, and routinely produces longer sentences he is also becoming a little more organised. He can copy out words now, and he will sit at the table and concentrate on his homework (once we’ve managed to drag him away form his iPad). For a while now I’ve felt that one of Archie’s greatest problems has been his lack of oganisation and his slavery to involuntary movement and actions. It’s hard to complete a thought if it is always interrupted by the need to run and jump. It will be interesting to see how his emerging calmness and ability to concentrate develops. I am hopeful that it will continue to improve and lead us to exciting new places.

Combining words

Just a quick link really for this post, from the Speak for Yourself blog. They make the point that typical children are given at least 2 years before they’re expected to combine words, whereas children given AAC devices are often expected to produce sentence quickly. They then go on to talk about it being better to have to combine words yourself rather than use pre-programmed phrases (I agree with their comments on the whole btw, even if the occasional pre-programmed phrase does no harm, on the whole I think it is better to learn to produce those phrases from single words).

I wanted to add to this my observation that Archie really did need some time just using his device at a single word level. He has explored the device himself, he is now very familiar with it & with that familiarity he has begun to produce more complicated phrases. I’ve been struck by how typical his language development with the device has been, when compared to the speech development of his two younger brothers.  He went from single words to comfortably combining two words to longer phrases – now they can be very long indeed. He’s also made corrections, so whereas ‘not’ always used to appear at the end of a sentence it’s now, more often than not, found in the correct place. None of this has been achieved with intensive therapy, his development has taken a very natural course – the vantage lite just providing him with the voice to do that.

Talking to everyone

Archie’s been busy with the iPad camera this week. I’ve been a favourite subject (slightly traumatic, I prefer to be behind the camera)

 

There are times when the difference the talker has made to Archie’s life hits me between the eyes, this week has been one of those weeks. The first moment was when my Mum phoned. Archie grabbed the phone from me and said “Friday granny sweets Joseph Louis school”. He was reminding my mum that Friday is tuck shop day at Joseph and Louis’ school and he wanted some sweets. What he said wasn’t all that surprising – but the fact he was having a telephone conversation was nothing short of incredible.

The second was today. Archie was given a role on the school council and  formed part of an interview panel at school interviewing candidates for (I presume) teaching jobs. No silly questions about dinner parties with anyone living or dead, he just wanted to know favourite foods. That he can take part in interviews these days is somewhere beyond incredible. It shows in simple terms how much the talker has given him.

Surprise!

There’s a line in Priscilla Queen of the Desert (well the musical version anyway) where Tick introduces his son to Bernadette with a ‘SURPRIIIIISE’ and Bernadette falls over. It’s funny and it’s been replaying in my head this week quite a bit.

First time was when I asked Archie his address. And he told me. His address isn’t stored as a phrase, he had to find each word separately, which he did without difficulty. He knew his house number as well.

Next surprise was when I sat down with him to read bloody Biff and Chip (I clearly celebrated too early when Louis finished Biff and Chip a few years ago) with him this week. I decided to point to a few words to see if he could read them by finding them on the talker. Mum, Joe, dinner, carrot, eat, and, home, finished were no problem at all. He found them without hesitation. After one page he’d had enough of reading, but still I was impressed. This was done with a typical teenage reluctance to engage in homework (one eye on the iPad).

I thought it time to update with a couple of short videos, these were taken today. Notice how he’s now playing whole phrases after he’s found each word. Also ‘not’ seems to have moved into the correct position in the sentence. And there’s a little joke where he says yes to something he knows he isn’t getting. Notice as well how at ease he is producing these longer sentences.

Day Tripper

Yesterday Archie asked me whether we could take a trip on a train today. I agreed, which was met with some excitement, and decided now Archie is a little calmer to combine it with a trip to Cothele, a local National Trust property. We took the train to the picturesque Calstock and then walked the one and a half miles to the property.

 

The whole trip was a reminder really of how far Archie has come. Last time I took a train with him he screamed while waiting for it to start, this time he sat pretty quietly, last time we went to Cothele he ran madly through the house, today he waited quietly for people to walk past him and checked with me before diving up some stairs. In the past I’ve felt that keeping control of Archie out and about is a bit like containing Road Runner. Things are on the whole calmer now although he certainly has his moments and sometimes there can be noise (not today, he was very calm).

Archie took his talker (of course) and use it to comment throughout the day. For example, I wondered aloud whether we should go into the house and he decided that yes we should, so we did.

Yesterday we had one of those conversations that we really couldn’t have had without the talker. Fed up with listening to the same CD (known as Louis’ music) on loop I told Archie that we were having my music on the way back in the car (currently an eclectic mix of Ben Howard, Priscilla Queen of the Desert and Cosmo Jarvis). He accepted this, then after about 5 minutes said Louis music Tuesday Louis music Saturday. I agreed that I could tolerate this and he settled back smiling.

Not however smiling quite as broadly as he was on the train today. This smile was reserved for the glimpse he had of The Tamar Bridge and Brunel Bridge.

Arguing!

I think I committed a cardinal sin in the autism-blogger world by not blogging at all during April, autism awareness month. I had a couple of ideas for posts, maybe something about surfing, or something about how under-used AAC devices are in the UK. After all these are the two topics I’m happy to promote awareness of, both within and outside the autism community. I was held up for the first week of April by work and then ended up rather depressed by the whole autism awareness month thing. My Facebook and Twitter feeds  reminded me how terribly political autism is. I nearly ended up writing a post on how autism is really autisms and we in the autism community maybe need to be more mindful of the different needs of the various groups that make up so-called autism. But life carried on and I never really managed to put a coherent post together. 

So with autism awareness month out of the way for another year it’s time to update on Archie’s progress. A lovely new development, that I have to admit I am enjoying is that Archie is now arguing with me. A typical exchange occurred today:

Archie: Granny and Grandad Ireland’s house tomorrow
Me: No Archie we’re not going to Granny and Grandad Ireland’s house tomorrow
Archie: Yes
Me: No
Archie: Yes
Me: No

Repeat x20

It perhaps doesn’t seem like much, but considering it’s not that long since Archie realised he had choices it reminds me how far he’s come in the last few years.

We’re also back in the water. After a 3 months break we’re finally managing to get surfing again. Archie has been overjoyed to be back out in the water with Harry. I’ve discovered that taking a break from January has left me really unfit, but we’ve had some fun Sundays catching waves in the sun. Archie and Harry have had some long runs into the beach on some mellow waves while I’ve been spending most of the time falling off an SUP. I had some success and managed to catch a (very small) wave standing. I think Archie’s going to be in his spring suit for the next trip out and I’m going to be able to bin the boots. Life gets better.

I don’t have much in the way of recent photos so I’ll link to the first surf video I took of Archie to celebrate the start of summer. He looks very young in this video but seems to be spending a lot of time watching it at the moment. I did genuinely seek permission to use the accompanying Aphex Twin track as well, one of Archie’s favourite tunes.