When Worlds Collide

family selfie

I have very few photos of all the boys together in the early years. Partly because by the time I’d lined up the two youngest, Archie would have scarpered out of the photo but also because we didn’t really do a lot as a family. Archie at the time found neurotypical events difficult to handle & on the whole needed to spend his whole time moving. So even family trips to the beach or camping tended to break into two groups, one parent with Joe and Louis in one spot, paddling, playing football or whatever and the other walking into the distance with Archie. At that time I often felt as if we were had two entirely different families under the same roof. It was a time of contrasts, switching between planet autism and neurotypical land, with very little overlap.

Gradually over the last few years the distance between the two worlds has decreased and most of the time now we just have our family time. Okay it’s not always a typical family, but we can go out and eat together, we can shop together, we can go horse riding, surf together & ride bikes together.  This is reflected in the family photo albums where all three boys can be seen enjoying  life together, creating joint memories.

It’s entirely normal for us now to do most things together and it’s rare to get that sense of planet autism vs neurotypical world. There are times when there are reminders – attending in quick succession a secondary school carol service in a candlelit church or watching a mainstream primary nativity, versus the warm chaos of Archie’s school christmas celebrations for example was a reminder amongst others that there are still differences. There are still things that Archie can’t do. Not many, but cinemas and theatres are still a no go area for him.

Which brings me onto this week. Joseph was performing in the UK Priscilla Queen of the Desert tour for the third and final time. This is what we tend to refer to between ourselves as extreme neurotypical parenting, as it’s really a large step away from anything we experience with Archie. He absolutely loves the Priscilla CD but still wouldn’t be able to watch a performance in a 1000+ seat theatre. The weeks that Joseph takes part in professional theatre shows are always warm, sunny weeks, full of family and friends going to see the show and this week was no exception. Because it was Joseph’s final Priscilla week,  I agreed he could see the show. The final matinee of the tour was a lovely way to end a really fun week – the sort of week when you realise just how much fun parenting & well life really can be.

We arrived home after the show, both of us on a show inspired feel-good high; Joseph decked in pink feather boas and wearing a Priscilla cap and found Archie a bit angsty. This eventually led to a very major meltdown at about 8pm. Suddenly the chasm between the two worlds felt very large indeed and the high of the previous week crashed. It felt as if we were being launched from one extreme to another. One of the problems with meltdowns is that it can be very hard to understand why they have occurred. We focussed on getting the house calm and encouraging Archie to sleep.

This morning Archie again woke very anxious and a further meltdown followed. I tried to talk to him about what was upsetting him but he finds talking about negative emotions incredibly difficult. This is recognised, and is and is being targeted by school as well, but like everything it’s a long process of short steps. I tried to put myself in his shoes and realised that I’ve been out a lot more than usual in the last week watching Priscilla and family and friends have been coming and going and he might find the changes and my absence difficult. I explained to him that granny and grandad Ireland were back in Ireland and that Joseph’s theatre show was over. He latched onto this – repeatedly saying ‘different day’ and seemed happy when I replied that yes, Joseph would be at the theatre on a different day, not for ages and that I was going to be home most of the time again. If my absence was the issue it is of course something we need to keep an eye on – I can’t be unable to go out, but this morning it was a just a relief to see some of the anxiety go.

I took Archie to the beach with me to walk the dog. Richard was a bit concerned – with good reason. The beach was busy, and public meltdowns or meltdowns while driving are hard to handle. However, it was the right decision. The tide was out and as we walked I could see Bigbury working its special magic, the anxiety dropping away and my smiley boy returning.

We returned home and Archie has been wandering around this afternoon carrying a pink feather boa wearing Joseph’s Priscilla cap. The gap between the two worlds is decreasing again. We’re easing back into our funny family life.

This Is My Child

We've found some surf!

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.

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.

name

Questions, questions, questions.

questions jar

Joseph finished primary school this week. Come September he’ll be off to secondary school with 174 people in his year group – more than the total number of pupils in his current school. A time of change, and it has been a week of reflection. We have been lucky with the boys’ schools. Apart from a dodgy few terms when Archie was in mainstream (and to be fair that wasn’t entirely the school’s fault – Archie should never have been there) the boys’ have been in supportive schools who have done their best to help them reach their potential. In Archie’s case that potential seems to be expanding rapidly and I’m not quite sure where we’re going to end up.

Year 6 were given a warm send off. A close group of friends, there were tears when it came to say goodbye and a rather idyllic final barbecue overlooking the sea, with water fights, British bulldog and a swim in a sea pool. The children were given some lovely gifts including a jar of questions each from their class teacher. The note attached to the jar says that the questions are designed to get the children chatting and debating with their friends and family. They range from simple questions such as ‘what is your favourite place in the house?’ (Joseph: the computer room; Louis: the front room because I watch TV in there) to more abstract ones such as ‘if you could have any superpower in the world what would it be and why?’ I’ve put it on the kitchen table to encourage meal time conversation. It’s a thoughtful gift for any family. I thought Joseph might need to be a bit older to appreciate the value of such a gift but he was genuinely delighted and was keen to get started with the questions.

It’s a particularly useful present for our family because Archie often finds these sorts of questions difficult. Most of his conversation is concrete, usually about what he’s doing, or has done and when. I asked him earlier today what his favourite food was and he struggled to answer. Archie eat; Archie like food; eat food tomorrow were the initial answers before he said sweeties. Many of the questions in the jar are great for encouraging Archie to start to understand, think about and answer these more abstract questions, where he has to express a preference rather than provide an absolute right or wrong answer. He did well with ‘what is your favourite room in the house?’ and answered bathroom pretty quickly. He may not understand the concept of superpowers yet but he was included in the conversation and made his own contribution mummy car. A question about whether you would prefer to live on the moon or in the ocean led to a great debate between Joseph and Louis centring mainly on available food. I translated a little for Archie asking him which he preferred, the moon or the sea and he said sea which surprised me a little, maybe he recognises the effect the full moon has on him! Maybe he just wants to go surfing again, life has intervened and we haven’t been for a while.

While many of the questions may be a little out of reach for Archie at the moment, through being asked to contribute and through being part of the conversation I expect him to find them gradually easier to answer. Language cannot be learned passively, it is only through using language that you learn to wield it. These mealtime conversations provide an opportunity for Archie to take part in describing preferences and in debating without the attention being solely on him. He can hear other people being asked the same questions and listen to their answers. He can begin to understand that we are interested in his answers as well as his brothers’ and he can learn that questions aren’t always asked as part of an assessment and aren’t always designed to trip you up and reveal what you don’t know. It is a way in which we can show that we are assuming competence, something which Naoki writes about in The Reason I Jump. Incidentally, slightly off topic but this is a subject close to my heart and I co-authored a book chapter published this month on the issue of competence (Laughter and Competence: Children with Severe Autism Using Laughter to Joke and Tease in Studies of Laughter in Interaction).

Whilst I am aware that Archie doesn’t (yet) have the means to always express himself in a way that is easily understandable and that he sometimes needs help interpreting questions I can see the question jar becoming an important family tradition. I am already hatching a plan to get everyone to contribute new questions when we’ve worked our way through the originals. It is interesting for all of us to think about our answers and explain or defend them. To have Archie able to take part in this is wonderful. From expensive high tech talkers to simple jars of questions other people’s gifts are having a large impact on our lives.

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.

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)

A&C

 

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.

Calstock

 

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.

happy train

Chilling

close beach

 

Just a quick post today. I headed to the beach to meet a friend staying in Bigbury on holiday. After lunch Archie and I did the usual dog walk – easy today because the tide was out. We walked around the corner and along the river, where, Archie sat down. This doesn’t sound like much, but Archie never sits down at the beach. Usually we walk, surf, do whatever we came to do, eat, then leave. Sitting and admiring the view isn’t part of the plan. I was delighted, he looked very content sat watching the river running some sand through his fingers occasionally. I’m hoping now that it wasn’t a one off.

distant beach

Decisions decisions decisions

chatting at the beach

For the first ten years of Archie’s life I probably made pretty much every decision for him. Until he was about 5 he had really no concept of having a choice and would treat every suggestion as a command. To complicate matters further it took until he was about 10 before he had a functional yes and no. By this I mean it took that long until he had a way to communicate yes and no and an understanding of the concept of yes and no, in other words an understanding of what yes and no actually means. It’s hard to imagine not understanding the words, but they’re abstract and for a long time Archie didn’t. The upshot of this was that we couldn’t have simple ‘do you want  to go to the park’ type conversations because Archie had no way of saying yes, or indeed no.

Gradually we developed a simple way of offering choices; ‘would you like this or this – using a picture or symbol to offer the choice’. If Archie wanted neither option then we would start a guessing game. It was slow, frustrating and often resulted in no resolution. Once an understanding of yes and no developed it made running through options easier but we were still limited to me having to think of various options while hoping to stumble on an acceptable one. Archie’s choices were limited to my imagination and he struggled to communicate a choice without me first offering it.

The talker has made all this much easier, and this improved communication has resulted in less frustration and Archie being able to have more agency over his life. We had a fine example of this this week. I booked a surf for today as soon as I realised that Archie had a non-pupil day at school. It seemed ideal, his brothers  would be at school and it would occupy the first day of the half term. Except last weekend he went down with a really grotty cold. He’s been insisting on going to school but has been coughing and spluttering all week and really didn’t seem to be 100% fit to be dunked in the sea in February. In the past this would have been problematic. If I had said something was happening it had to happen, or a massive meltdown would result. There was no way to negotiate an alternative or even explore what Archie actually wanted to happen. I had to try and guess. And, as might be expected, frequently guessed wrong. The talker has made all this easy. By Wednesday when he was still spluttering everywhere I reminded him he was booked in to surf on Friday, but asked him whether he wanted to go given his cold. Different day came the reply.  I was able to check ‘do you want to surf on Friday?’ no. So I asked when. Sunday. Okay Sunday, but he clarified further. Downham Saturday surfing Sunday.  He wants to surf the Sunday after he’s been to respite on the Saturday. And all decided without a meltdown or me having to tie myself in knots trying to guess what he might want to happen.  The day pinpointed all I have to do now is keep an eye on the surf forecast. If it’s forecast to be flat we’ll use the talker to renegotiate.