toilet training

Blue is more or less toilet trained!

We had our first bash at toilet training in mid-February.  Blue was showing some signs of readiness.  He was rarely happy about having his nappy changed and was interested in the business of going to the loo.  He would sometimes follow The Sensible One or me into the toilet, and he enjoyed saying "Bye bye, wee" and helping to flush.

We quickly realised that going to the toilet is quite a complex process for someone like Blue.  There's all the physiological stuff - recognising the urge and so on, the different parts of the routine (trousers down, pants down, sit on toilet, etc) and there's the language associated with it.  We threw Blue in the deep end, filled him full of juice and had him go to the toilet A LOT - nearly 30 times on the first day!  He got lots of positive reinforcement for wees in the loo, but they were caught more through luck than judgement.  By the end of the week, we were all hacked off with the process.  Blue had learned plenty.  We had got him over his fear of sitting on the toilet, he knew the routine, but the connection between the urge to wee and actually going to the loo had not been made.  He was bored and so were we.  It felt like we had done really well, but that we should take a break and work on the wees separately.

So, the March Easter holidays rolled around and we decided to give it another go.  We planned to try, intensively, for one day and see where we were.  If it didn't look like Blue was getting it, we'd leave it for another month and try again.

This time, there were no pants and no routine.  Blue was free of clothing from the waist down and pumped full of juice again.  We put all his favourite toys in the bathroom and we hung out in there for the day (with regular short breaks).  The minute he started to wee, he was whisked onto the loo and praised wildly.  We then took him out of the bathroom, thrust the iPad into his hands as a reward and let him have a break.

By the end of the first day, he was getting into it.  We would sit him on the loo at half hourly intervals and he would often wee straight away, suggesting that he was holding it until we took him, so we decided to keep up with the training.  Seven days later, he ran into the bathroom to wee of his own accord and we haven't looked back.

Two weeks after we first started, Blue does the following:

• Runs to the loo when he needs a wee;
• Wipes with toilet paper and puts it in the loo;
• Answers the question "wee yes or wee no?" reliably;
• Goes to the loo at our suggestion if, for example, we are leaving the house; and
• Goes to the loo on his portable toilet seat outside of the house.

Blue does not yet:

•  Ask to go the loo; or
•  Sit, happily, on the child-sized loos at nursery (he has only had one nursery session since being trained).

We have not yet added in any of the routine, so we follow Blue to the loo and take his trousers and pants down and up, and help him on and off the loo.  We will add it back in gradually when he has started asking to go to the loo.  The rationale behind this, is that we want going to the loo to be as straightforward and non-aversive as possible, so that he is not discouraged from asking to go.  As he knows how to execute all the parts of the routine already, it should not take long to add them back in.

Blue also does poos in the loo, although he can get a bit confused by the urge, so it's still up to us to spot the signs and suggest he goes.  I've noticed that he now poos every other day rather than every day, so I think he might be hanging on to it a bit.  However, he seems entirely untroubled about pooing on the toilet and goes eventually.

My top tips for any other high functioning kids would be:

1.  In the run up to training, talk about wees and poos a lot and let your child see you use the toilet.  Read books about using the loo and transitioning from nappies to the toilet (our favourite is Everbody Poos).  Show him any new equipment, trainer seats (this one is super-comfortable), steps (these are very sturdy and a good height for a big loo), etc and have them lying around in the bathroom so he can get used to them.

2.  Teach the routine separately from teaching them to recognise and act on the urge to wee, and teach the routine first.

3.  When teaching weeing in the toilet, camp out in or very close to the loo for the first day or two.  The idea is to be errorless so that every wee, or part of every wee goes in the loo.  Make the loo a really fun place to be and the breaks boring.

4.  Identify a bunch of reinforcers that your child finds really motivating before you start, so that you can reward them for their success.  Give rewards quickly - within thirty seconds, if possible.

5.  Gradually shift the burden of identifying when they need to go onto the child.  Initially, when I suspected Blue would need to go in half an hour, I would remind him and take him to the loo on the half hour, sharp.  I increased this by 5 minutes every day or so (provided that this does not result in accidents).  In this way, they learn to hold the wee until they are taken to the loo (within reasonable limits!).  I always asked him whether he needed to go and when evidence taught me that his answers were reliable, I stopped taking him to the loo and waited for him to answer affirmatively.  As I say, on day seven, he started to take himself off to the loo without any reminder. 

6.  Forget everything else while you're training - nursery, intervention programmes, etc.  If you have other children, get as much help as possible so you can focus on the training child.

I should add that Blue is semi

At the moment, I am asking Blue to say "wee" as he goes in the door of the bathroom and praise him for saying it.  I am confident that before long he'll say "wee" to let me know he needs to go.  Currently, Blue goes to the loo when he is busting, but when he shows signs of recognising the urge a bit earlier, I'll get him to take his pants down first and start adding the routine back in.

Toilet training was both harder and easier than I expected it to be.  I wasn't one hundred percent confident we would be successful this time and a week does not seem like a long time to achieve such an important self-care skill.  I won't deny it was hard work, though.  I think we went to the loo every half an hour between 7am and 7pm for seven days!

games

Games are obviously important in the lives of all children, but they are especially important for the autistic toddler. A simple game can help them to learn about turn taking, the pleasure of sharing play, reciprocal play and many other subtle social cues and rules that we all take for granted.

Blue is not yet three, so I needed to find really simple games which might draw him in. I'd thought I'd share three successful ones here:

Red Rover

Red Rover consists of a red plastic dog with an open mouth and a blue backpack. In its bag are a series of bones decorated with colours, shapes and numbers which should be placed randomly on the floor or table around the dog. The player presses Red Rover's nose and he says "Red Rover, Red Rover, bring a BLUE bone over!". The player then has to find the correct bone, put it in the dog's mouth and he will be congratulated. The dog has the exceptionally irritating voice of a whiny American child, but I let it slide because the format is good. Blue doesn't like the voice either, so we often play it without and I just tell him which bone to pick up.

Pop-Up Pirate

To me, this is a classic toy - one I remember from my childhood. The aim of the game is to insert the coloured swords into the barrel without making the pirate pop up. It is really simple, great for fine motor control (without being too fiddly) and turn-taking.

Soundtracks

I love this game, and so does Blue! It is far and away the most successful game we have. The game includes a CD with lots of day-to-day noises on it (vehicles, animals, telephone, etc), four lotto-style picture cards and some plastic counters. The player has to put a counter on the correct picture when they hear the sound. The game is great for expanding receptive labelling, and we make it expressive too, by asking Blue "What is it?" after each sound, it has taught Blue the "listen" instruction and obviously, it's also good for turn-taking and all the usual social game skills. There is also an animal sounds version of this game which is slightly less widely available and, I would say, better for very slightly older children, or animal-obsessed ones!

We have a giant yellow dice which Blue loves, so I am planning to make a simple dice game for him, perhaps to work on his verbs, which are poor. His birthday is coming up, too, and we have a basic snakes and ladders game to give him.

I'd love to hear about games which are enjoyed in your homes, especially for little ones who are new to the concept of games.

aba

ABA (or "applied behavioural analysis") has taken over our lives.

I won't go into huge detail about what ABA is but, in essence, it is a form of teaching that involves looking at certain behaviours and their context, and applying ABA methods to change that behaviour. A simple example might involve getting a child to sit on a chair. The ABA tutor would give an instruction ("Sit on the chair"), provide prompting (physical or verbal) if necessary and when the desired behaviour occurred, i.e. the child sat on the chair, a reinforcer would be given to the child straight away. This could be anything from edibles, to social praise or a favoured toy. Over time, reinforcers are faded out, desired behaviours are positively reinforced and hopefully occur more often. We all learn certain things like this naturally. ABA just formalises and intensifies the learning.

Our programme is mainly home-based. Blue has three hours of ABA a day at home, excluding weekends. He attends mainstream nursery for four afternoons a week and is shadowed by an ABA tutor for two of those sessions (soon to be upped to all four). He has two wonderful tutors. One, Dell, is experienced and working towards her BCBA certification and the other, Doda, is a novice we trained up - his baby sitter, in fact.

We set up our programme through PEACH after looking at a couple of other organisations, including UK YAP, but we found our experienced tutor on the ABA VB Community notice board. The PEACH consultant sets up the targets and suggests how they might be achieved and the tutors work on those targets with Blue. Our current programme includes everything from verbal imitation to fine motor skills.

The programme has been running for 3 months, though in reality with Christmas, illness and holidays, it's less than that. We've seen the most improvement in speaking. Blue had very limited expressive language before the programme, but now he is much more chatty. His echoics have come on tremendously. He will have a go at saying almost anything. His requesting has improved since the addition of the "Blue wants..." phrase to his repertoire. He tends to only request certain things ("iPad", "up", "help", "blanket" and "juice" are the main ones), so I'm looking forward to seeing an increase in the number of things he will request. His receptive labelling (e.g. pointing out the correct picture when asked "Which one is "duck"?") is excellent. His expressive labels are also good (e.g. giving a correct verbal response when asked "What is it?" and shown a picture of a duck), although a lot of his expressive labels are word approximations.

The other big area of improvement is in general compliance and following direction/instruction. Before the programme started, Blue simply would not to anything you told him to do.

We actually have two consultants. As well as our lovely PEACH consultant (who, it must be said, is overworked), we have a dynamic, firebrand, Norwegian. He had worked with a boy who attended Blue's nursery and achieved great results. We agreed to work with him on a documentary about ABA. I can't say much about the documentary at the moment, but I'll share more later.

Our Norwegian consultant managed to explain to me what the ABA programme is trying to achieve. He explained that neurotypical children learn incidentally during all their waking hours. Autistic children generally do not learn successfully in this way. If a child gets an ASD diagnosis at two years, we need to set about making up for two years of lost time. Personally, I think that's not exactly right. Blue was learning, but he was learning atypical things, like what a hexagon is. Even so, it made me realise that our teaching needs to permeate all our days. That's not to say Blue needs to have ABA from dawn to dusk, just that we need to be constantly on the look out for opportunities for learning. Reading a book is a chance to try out some receptive and expressive labels, playing with Playdoh is a chance to practice some craft imitation and so on.

ABA claims that it is the only research-backed early intervention programme: we take that with a pinch of salt. It is true that the research is out there and reflects positively on the programme, but a lack of research about other methods does not mean they don't work. On a visit to Queensmill School, The Sensible One and I told the Head, Jude Ragan, who we much admire, that we were contemplating an ABA programme. She said "Fine. So long as you do something." I think she is right. ABA is not rocket science and, to coin a further cliche, there is more than one way to skin a cat. The important thing is to look at your child's deficits and think intelligently about how to address them. This may well require the application of some expert knowledge, in the form of books, at the very least, or perhaps a programme like ABA or Early Bird.

There seems to be a lot of misunderstandings about ABA. It's based on the work Dr Lovaas who worked out of UCLA in California. His highly structured programme used "aversives" as well as reinforcers, i.e. shouting, striking, etc. With one controversial exception, aversives are no longer used in Lovaas-type programmes, thank goodness. Some people are also concerned that the programme will eliminate any individuality or creativity in the participant. The latter criticism is why I strongly believe that the programme should be parent-led. You need to make decisions about what behaviour should be targeted and what is harmless. For example, Blue has some mild stims (finger and hand posturing and a quiet verbal stim). I do not see the need in targeting these behaviours because they do not interfere with his, our or anybody else's life. There are other ethical objections related to the neurodiversity movement. I have some sympathy with the movement as I have no doubt that some of Blue's inherent blueness exists because of his autism and I would hate for him to lose that. Again, I think ABA can be used, carefully, to help autistic individuals in certain areas. When Blue has an opinion on these matters, the decision on what help he receives, or not, will be his but, until then, we'll just have to do the best we can.

I don't know how long the programme will run for. In September, Blue is meant to attend nursery full time. We'll have to think about whether he is ready for that, or whether ABA should continue to run alongside nursery for a while longer. Whatever happens, it really feels like ABA has put us back in control.

the wavelength of blue

If autism occupies a spectrum, what is Blue's wavelength?

The word "autism" popped into our heads very early on in Blue's life. I had signed up to a baby development newsletter which appeared in my inbox from time to time. In the early weeks/months, I remember reading that my baby would be transfixed by my face and thinking "He hardly looks at me." I'm ashamed and embarrassed to say that at one point I Googled "My baby doesn't love me". Blue was two or three months old, so ascribing those kind of notions to him was ridiculous, but I was simply articulating a general anxiety I had about his development.

Blue developed an early fascination with lights and spinning things and he rolled his head a lot in bed, none of which is unusual, but combined with a lack of sociality, did worry us a little. Later, there was the abhorrence of the sound of clapping which meant baby classes were not fun for anybody (and interestingly, he didn't clap until he was eighteen months old). There were more warning signs which we only picked up in retrospect, for example some sensory issues around weaning, not responding to his name and poor sleep habits.

Play dates were often hard work, even as a tiny boy, and got increasingly so, peaking at about 2.5 years, when he would sometimes hang on to the door jamb of the front door of friends' houses in an effort not to be taken in. We also couldn't leave him with anyone - his grandmother, a creche. Separation anxiety is obviously totally normal, but his response to being left was off the charts.

Although, we had privately worried that Blue might be autistic, he also hit a lot of his milestones, especially in the first year. In fact, he was quite precocious in his gross motor skills. He rolled and sat early and he walked on the day he turned ten months, despite the fact he didn't really crawl at all (he did an endearing half shuffle for a week or two). He was an early and brilliant climber. I got used to the alarmed expressions of other parents in the playground, unnerved by seeing this tiny boy at the top of the big kids' climbing frame.

Blue was a really happy baby and young toddler. He had a great sense of humour and was easy to amuse and entertain. All in all, there was enough that was "right" to have us flip-flopping constantly over whether there was anything worth investigating.

He said his first words ("mama" and then "dada") just before he was twelve months, but language came quite slowly after that. As I've described elsewhere, it was this apparent delay, which led us to ask for a referral.

At this moment, Blue is semi-verbal. He talks less than most children his age, his language is functional in nature, although some social language is creeping in. His acquisition of speech has been quite disordered. For example, he has been speaking in simple sentences for a number of months, but only started babbling a couple of months ago. His main difficulty is that he is very difficult to understand. Only The Sensible One, his ABA tutors and I can really understand most of what he says. His speech is characterised by a preponderance of "d" sounds and a lot of word approximations. If he asks for a drink, he will say "Des (what he calls himself) dof (wants) djus (juice)."

Socially, Blue tends to isolate himself from his peers. He used to be very wary of unfamiliar adults, too, which basically meant anybody that wasn't The Sensible One or me. However, gradually he has come to accept that adults can be cool and he's usually very happy to have our friends, relatives and his austism team around. He is improving with his own age group, too. He used to actively avoid young children. If they were on the climbing frame with him, he would get off. If they came near him, he would move away or freeze up. At nursery, we are hearing more and more, that he is tolerating parallel play. His ABA tutors (about which, more later) shadow him for a couple of nursery sessions a week and they are trying to set up simple games, like tag, with Blue and the other children, with moderate success. Blue loves older children (aged about 8 upwards), especially boys, when they are kind enough to admit him to their games.

Blue still has some sensory issues, mainly around sounds, which I can't quite get to the bottom of. Some I understand - he doesn't like it when nursery gets boisterous and shouty, for example. Others are a bit mystifying. He doesn't like books that make noises and he often doesn't like particular sounds on the television. He's fine with real life fire engines, but woe betide a book that makes a nee-naw noise. I guess it must be the lack of context? He eats quite well for a child on the spectrum, but any objections to food are likely to be textural rather than taste. He is quite poor at biting, so food has to be in small pieces otherwise massive pieces go in, and then come out again(!) This is part of a general hypersensitivity in his mouth. He will wipe his mouth if he gets food on his lips and cleaning his teeth is a terrible battle .

What else? He's still such a tot, so it's hard to know for sure, but he seems quite bright. He knows all his letters and their phonics, he can count up and down from largish numbers, and he knows his colours and shapes. Of course, he has probably paid attention to these abstract concepts to the exclusion of more usual things - like people, so it may just be has had an increased opportunity to learn these things ahead of time. This is all wonderful but, as Blue's ABA consultant tells us, knowing what a hexagon is won't make him any friends. Regardless, he learns quickly when he is focussed.

Here's a funny thing. Blue is very handsome. I know all parents think their child is beautiful, but I've had people cross the street to tell me how gorgeous Blue is. When he was smaller and I used to carry him in a carrier on my front, scarcely a day went by, where I wasn't stopped on my way to the local shops to be told how lovely he is. I remember telling someone that Blue was autistic and their response was "Oh, I'm sorry. But at least he's good-looking." I can remember being quite offended by their reaction, thinking that a pretty face was hardly an adequate swap for serious developmental delays. However, now, I kind of agree. The fact of the matter is that people like attractiveness and his life will be the easier for it. Charlotte Moore (mother of two autistic boys and the wonderful book George & Sam) wrote eloquently about it here.

I understand that tantrums are very common with children on the spectrum, but Blue has always been very even-tempered. He has just started having the odd little tantrum but, so far, they have been reasonably easy to curtail. We let him get the worst of it out - he tends to be very upset, rather than angry - and then count down from a high number and offer him juice and his blanket. I wonder whether we'll be in for a bit more on the negative behaviour front. I should probably read up on how to manage them, just in case.

What does Blue like? A lot of things. He loves books, physical play, vehicles, travelling on buses and in taxis, music and singing, crisps, juice, and the big one - our iPad! His love of the iPad deserves its own post, so I'll just say he is an Apple fanboy and his love for the "daPi" (our secret code name, so he doesn't clamour for it every time we mention it) is all-consuming. It's great that he has so many interests, because they provide "ins" into his world.

Hopefully, that gives you a bit of a picture of our dear elder boy. I guess he would be classified as a beautiful, happy high-functioning autist.

diagnosis

I think the diagnosis, when it comes, must be a very different experience from family to family. I can well imagine that in some cases, it comes as quite a shock. For us, receiving the full diagnosis was just the final, unwanted tick in the box. We had been in receipt of a working diagnosis for six months and Blue's paediatrician had already told us that he had not seen anything to change his mind. So when we walked into his consulting room, we did not expect to hear anything new or surprising, and we didn't.

The road to diagnosis

If you can discount the period before we raised our concerns with our GP, our road to diagnosis was a short one. My husband, The Sensible One, studied behavioural neuroscience at university and I studied biomedical science. This does not qualify us to diagnose our own son, but when those first concerns reared up, we were programmed to analyse and research what was in front of us. The final straw which propelled us to book an appointment with our GP was Blue's apparent speech and language delay. We walked into the GP, laid out our concerns and asked to be referred to a specialist.

Two months later we had a consultation with a consultant paediatrician at our local Social Communication Disorders clinic. We received the working diagnosis on the basis of what was observed at that first appointment, which lasted about an hour and half. The consultant took a history, went through a questionnaire (possibly, the M-CHAT), and he and his speech and language therapist (SALT) observed Spike's play and general behaviour.

A few months later, Blue was invited to attend a Social Communication Disorders group which consisted of 4 clinic-based sessions over one month. They were led by a SALT and were a repeated series of highly structured activities, including free play, parent-led play and a sensory activity.

Between the initial appointment and the diagnosis appointment, we saw occupational therapists, physiotherapists, SALTs and completed an alarming number of questionnaires. The outcomes of these appointment were fed back to the consultant and contributed towards our diagnosis.

Our diagnosis

We had been sent the various reports as they were written, so when we saw the consultant again, he asked if we wanted him to go through them. We said we did not. He then told us that what he had seen and what had been reported to him by us and by the team was consistent with a diagnosis of Autistic Spectrum Disorder.

As you will probably know, autism is a lifelong, pervasive developmental disorder and it would therefore not have been appropriate for the consultant to be full of light and laughter - or empty reassurances. However, I was quite surprised that he seemed unwilling to allow us any hope or optimism, mainly because the NHS seems unable to get beyond the fact that they can't accurately predict the future. Obviously, if we ask the question "Will our son be functionally independent and lead a happy life?", the correct answer is "We don't know." But, I really don't see why they can't then go on to offer the benefit of their experience. Based on the progress he has made, and had already made at the time of diagnosis, we now know that the outlook for Blue is good. There is a good chance he will be able to go to a mainstream school, that he will be functionally independent as an adult and that he will learn to talk and use language appropriately.

Obviously a "good chance" is not the same as something definitely happening, but as a parent I think it is very, very helpful to be given some sort of an idea of what the future might or even will likely hold. Most people are not stupid, they know that "likely" does not mean "inevitably" and "might" does not mean "definitely". Of course, the flip side of this, is that parents should be told if there is little chance that the child will be functionally independent, learn to talk and so on. That would be so much harder to hear, but it should be heard. Mind you, I only have my own experience to draw on, perhaps other people have been given more guidance.

Even when the prognosis is poor, I think the medical professional giving the diagnosis should try very hard to find something hopeful and optimistic, though truthful and realistic, to say to the parents. An ASD diagnosis is a huge mental and emotional burden to give to a parent and they will need strength to cope with it. Being told that, for example, there is a highly experienced team of professionals waiting to help them do their best for their child would, I'm sure, be a welcome thing to hear.

Treatment options

The most practical form of support that can be offered at that early stage, I think, is some sort of professional overview of the treatment options available. Following our diagnosis, we had an appointment specifically to go through this. In reality, all it amounted to was the consultant handing over a piece of paper listing some treatment options and a second piece of paper which was a print-out from researchautism.net (a fabulous resource, by the way) grading various interventions and treatments. I was asked if I had any questions about any of the treatments and that was the end of it.

I can't remember what questions I asked, I think it was something to do with ABA, but I do remember that the responses were so wishy-washy and non-committal that I didn't bother to ask any more.

I hate to think about some poor parent who has just been landed with an unexpected diagnosis and who has never heard of ABA or AIT and is then asked if they have any questions about this webpage.

To sum up, the whole diagnosis process seems to leave parents thinking "What now?" which is a horrible position to be left in. I would like to see parents leaving the diagnosis appointment with a suggested, personalised action plan in hand. I know it's trite and not at all the same, but a doctor would not say to a parent. "I'm afraid your child has cancer. I can't give you any idea of the prognosis. Here is a list of places where you can research treatment options."

Ports of call

My suggested first ports of call following a diagnosis are:

The Complete Guide to Asperger's Syndrome by Tony Attwood
More Than Words by Fern Sussman
The National Autistic Society
and, as I mentioned, Research Autism is a great place to get reliable assessments of treatment options.

the first post

I'm Mum to a dear 10 week old baby who I shall call. Hmm. Let me think. Squawker. The Squawker's big brother is a cheerful, bright and energetic almost-three year. Let's call him Blue (it's his favourite colour).

In November last year, Blue received a diagnosis of Autistic Spectrum Disorder. This was the culmination of concerns long-held by my husband and me. It was an expected diagnosis. Difficult to hear, but also a tiny bit of a relief. Finally, the endless questioning, worrying and speculation could come to an end or, as it turned out - not.

In the period immediately following the diagnosis, we congratulated ourselves on being so on top of everything. Blue had had a working diagnosis since he was 2 years and 2 months and, all credit to the NHS, his therapies came online straight away. We had filled any holes by appointing independent professionals where necessary. We had researched the various therapies and early interventions available and decided that we would start an Applied Behavioural Analysis (ABA) programme. It started in the same month we got the full diagnosis.

Fast-forward three or so months and we're feeling rather differently. Squawker arrived, a dreary winter got its claws into us and, oh, I don't know, everything just got harder. The arrival of a second child always requires, at best, a gentle period of adjustment and, at worst, for the world to be turned upside down and shaken about before the dust settles. I think I can safely say we fall towards the latter end of that particular spectrum.

I'm not a talker. The idea of parent and support groups fills me with dread. However, my head currently contains less "grey matter" and more of a grey mess. I thought a blog might help me impose some order on my poor, beleaguered brain. Hence.

The things I would like to talk about in future posts are, in no particular order:

The Diagnosis
Blue's place on the Spectrum
Speech and language challenges
Early Interventions
Statementing

and a whole bunch of other waffle.

Colournumbershape? Those are a few of Blue's favourite things.