Friday, 29 June 2012

29th June - Toolbox of Tricks - What can Lucie do?

Friday night, glass of chilled New Zealand Marlborough Sauvignon Blanc in hand - that can't be right - surely they don't speak French in New Zealand - maybe I have been sold a knock off! Anyway - tastes good enough to my immature palette. Dave is out at the rugby and peace all around. I thought I would follow on from yesterdays talk about dog skills and let you know about the commands and skills that Lucie has.

I am a little naive about dogs and the whole world of training, so when I entered this journey it meant I had no idea what to expect. I thought assistance dogs would have a huge list of party tricks, and wow the crowds with their show stopping skills. But of course these are working dogs, and their skills may be a lot more subtle than the razzle dazzle you can train a dog to do. When I first met Lucie, and asked her to 'sit' for a treat, she blatantly ignored me. I thought, OMG, if she doesn't sit, what can she do? What am I letting myself in for?

I arrived on the residential training in May and all was to become clear. I realised there is a lot more to a dog than simply giving a command and expecting an outcome. Gaining their attention, delivering the command correctly, and in a way that they want to respond is key. So I learned not only what she could do but how to get her to do it. Tone of voice, attitude, relevant reward, gaining her respect was vital to have any chance of a command being effective.

I might add, I had this grand plan of making a little video of me doing some of these skills with Lucie, but I am not sure it makes interesting viewing. However the really amusing part was we recorded a bit of obedience work today out on a walk. I downloaded it tonight, and played it on the PC only to quickly realise Lucie was going nuts hearing all these commands, and running round excited trying to do them all. She must think I am a ventriloquist! I had to hit mute on the laptop before she got tied in knots :)

So I will stick to the ubiquitous list for now.... Lucie's skills are:

- Command responses including sit, down, settle, stand, wait, fetch, drop it, come, leave it (and 'ah ah' to reprimand), close, forward (to start walking), left, right, straight on, up up (speed up), steady (slow down), 'to the kerb' (to sit before crossing a road and waiting for 'forward' command), 'to the door' (sit and wait again before going through a door)
- Whistle responses are used for eating, she can only eat after two whistle blows, and there is also a whistle recall command
- Trained to be attached to Alex, with a waist strap and handle. She listens to my commands, not movements, so if Alex bolts off she hold steadfast and keeps him safe.
- Toileting is done on command - busy busy for a wee, big busy for a poo, and in a designated toilet area
- Behaviour is also limited to acceptable rules such as not going on couches, beds, no jumping up etc.
- Walking has to be relaxed and by your side. A black lead indicates she is working, so no sniffing around or distractions, a flexi lead means she can sniff and toilet. If on flexi lead or off lead she is like most dogs, but still has to be under control and respond as required. She will not run off to far, and will 'check in' on you while walking.

Whilst many assistance dogs have a much longer list of skills, like helping with washing, answering the phone etc, this is not necessary for an autism dog. Their key requirements will be engaging with the child they are partnered with. A child like Alex can have excessive tantrums, be physically very active, jumping and flapping, can make unusual sounds, squealing and shrieking, and be unpredictable. It is essential none of this unusual behaviour stresses the dog, so they must be trained to cope with these behaviours.

Just a couple of points on all this - be under no illusions that just because this is what Lucie is trained to do, and is capable of doing, that this all actually happens!! This is the aim, and what we are always striving to achieve, but there are days when quite frankly I am left thinking 'what on earth?!?*' She can be stubborn, test boundaries, have off moments and quite honestly be as dizzy as you like. I can be distracted, unclear, frustrated, forget my training, give mixed commands and lose direction. So things do go wrong. Even a simple command can be ignored on a bad day, so perfection is not a given, but an aspiration.

I have come into contact with several experienced assistance dogs, and am also starting to realise they aren't little robots performing exactly to command. They have personalities, moments and delinquent behaviours, but in essence they still do an amazing task for their owners. What has really impressed me is that no matter what has happened with Lucie during a walk, or at home, the moment I have put her jacket on and she is working, all attitude drops, and she instinctively adopts perfect obedience, and total control. When the chips are down she knows how to earn her keep....

In time I will be able to update you on new skills we develop but for now the task is to get these ones working well, and take it from there. My wine glass is empty. Time for a refill, and I think I will give this amazing Wimbledon tennis game my full attention.

Thursday, 28 June 2012

28th June - Can my pet dog get a jacket?

Just following up on a previous post mentioning FAQ's - things I get asked, that I thought if I dealt with here I could gently point people in this direction to read the blog, and I can get back to my favourite conversations by day - which I think are;

Is it only me that has a crush on Tim Minchin (who?),
Argentinian Malbec - the perfect date for a night in - discuss
Do your eyes deteriorate when you get older so we think we still look gorgeous?

Anyway enough pondering...FAQ Number 2. Is there any way a pet dog can qualify to get a jacket to give them public access?

Annoyingly my quick answer has to be, I don't know!! Not very useful - but the reality is I have heard a few conflicting things on this subject. Having said that I can share what I have learned so far. When I started out my first thought was, is there any way I can train a dog to the point they can be tested for assistance dog work, and then get the jacket to give us public access. It seemed a sensible question to me at the time, but I now realise I was missing the point.

As an overview there are 7 charities in the UK that provide Assistance Dogs, namely;
Guide Dogs ( ,
Hearing Dogs (,
Dogs for the Disabled (,
Canine Partners (,
Support Dogs (,
 Dog A.I.D. ( and
Medical Detection Dogs (
 These are all members of the over arching body which is Assistance Dogs UK (

In essence all the dogs that are trained by these charities fulfill the required standards set by Assistance Dogs UK. In my mind that meant that the dogs were super smashing well behaved with a huge bag of tricks (juggling and skateboarding at the very least). But I was off the mark. Yes Assistance Dogs are trained to a high standard, as are many pet dogs. But what is essential is they are useful to the task they will be assigned to. That is more than just having a long list of things they can do. To be an assistance dog, it is also essential to have the right temperament as needed, be willing to work and enjoy that task, and be presentable in public at all times.

So for an Autism Assistance dog for example, they have certain trained skills, such as attachment walking, can assist crossing roads etc. But that's only half of it. What is really important is they are great around kids, with the right temperament, and can handle situations, such as a child in meltdown, without getting stressed.

In terms of the public work, say being in a restaurant, the dog also has to be very clean, well groomed and in peak health. As an owner this means I take extra time cleaning Lucie down after a walk in case I need to take her out after, brushing her, and ensuring she looks top notch at all times. No one wants to be carving into their lamb shank, only to catch sight of a muddy paw dog scratching themselves under the table, begging for scraps. So in having a jacket the charity is ensuring the dog has both the skills, behaviour and hygiene to qualify for access in all public areas. This is monitored throughout the life of the partnership, ensuring both owner and dog are still up to the task.

 The other part of assistance dogs is it doesn't stop when the partnership is set up, that's when the real work begins. It took me a while to realise how Autism Dogs work. When they join the family they have a 'toolbox' of skills. I will go into these in more detail in the future, but for now it is a set of 10-15 commands and skills they are trained to do. Unlike many other assistance dogs they are not specifically trained for individual tasks. Initially they just settle into the relationship with the child. When this is established then the real work can begin tailoring the skills of the dog to the needs of the child. This is done with the support of the trainer, and ongoing training to ensure the assistance remains relevant and useful. In this regard every dog is tailor trained for the needs of the client they are assigned to.

Back to pet dogs, the charities in general cannot just assess a dog as having a high level of skill and allowing a jacket, as there is ongoing monitoring and support required. Having said that, whilst autism dogs do not have a process yet to qualify pet dogs, I believe for some other programs, such as Disability Dogs, this may be an option, whereby a pet dog is brought in and trained, and becomes part of the supported assistance process. At this point I am out of my depth.

One thing I have heard repeatedly on my journey in relation to Autism, is that for those with well trained pet dogs in comparison to Assistance Dogs, there can be very similar benefits to be gained. Whilst there isn't the formal work of attachment walking and public access, over time, it is often reported that the greatest benefits of the dog are in everyday activities, and the relationship that develops with the child. So whilst attaining a jacket may not be possible, the majority of the benefits can still be gained by training a pet dog, and nurturing the relationship with the child.

If its any perspective, I think of the range of skills dogs can have. Lucie is ultra rubbish at playing 'fetch' with me. I see pet dogs every day doing things that are out of our reach. (I think Lucie thinks she is a cat, the way she wants to sit on your lap and have her tummy tickled - the girl needs psychotherapy for a canine/feline complex). I understand the winner of Britains Got Talent is a dancing dog with awesome skills, though my favourite pastime is watching 'Border Patrol' trash TV, with sniffer dogs finding cash and drugs - now THAT is a useful talent :) If only Lucie could sniff out cash, maybe life would take on a much rosier glow. So dogs come in all shapes and sizes with a huge range of skills, and jacket or no jacket they can be awesome.

Monday, 25 June 2012

25th June - A mindless ramble about my day

Its been a long day.  I started it feeling very ill having got a sore throat yesterday.  I took paracetamol at 5am and thought, I wonder if I can throw a sicky today?  Can Mums call in sick?  Dave is away in France on work, so I thought, maybe I can clear my day and just sit on the sofa rocking gently, drink strong coffee and finally read the next chapter of my laid plans.....After 2 hours of sorting out dog, cat and kids, it was then time to walk Lucie.  She doesn't have time for me to be off sick, so an hour out with her and I thought - time to collapse.  As if.  The next hour was spent trying to sort out Barnardos activities for summer, then I get a phone call from the Consultant Audiologist saying they have a cancellation today, and could I bring Alex.  Ah well, the book will have to wait....can't even remember how it started now anyway.

I realised I had not prepared the audiology department that we were coming with an an assistance dog, but hey ho, it would be fairly obvious soon (unless they thought Thomas had got very hairy since he last saw them).  We have been to these hearing test appointments before, they take about an hour, and Alex is a handful.  Twice we have had to drag him in screaming refusing to enter the room, let alone getting tests done.  And don't even mention being able to look in his ears.  He doesn't have a hearing problem, but he does have 'Hyperacusis' - I can't even be bothered to Google that to see if I have spelt it right, you will never need that word again in your life!   It means Alex has sensory processing problems with his hearing, not so much loud/quiet noises, more some noises, like people talking together, or particularly crying send him insane to the point he is extremely distressed.  We need to train his brain to manage sounds, and cope.  I have a great Audiologist who really understands Autism. Net result is we have been given strategies to work on, like recording sounds he struggles with and playing them back quietly, and also hearing aids - well not hearing aids but they look exactly the same.  They play a very quiet white noise into his ear and it is supposed to help with redirecting his hearing processing.  Anyway I digress, I just find all that fascinating as never even knew about it we have an appointment to see how he is doing (confession time - we are not perfect parents, and I was dreading having to crawl back saying we hadn't got it all sorted out, and for the last three months had not used the white noise thingy as Alex kept pulling them out - but that's life).....

Anyway - Alex arrived all calm, and any worries about the reception we may receive was obliterated as Lucie got smothered in cuddles.  Alex was calm, and one way or another a hugely successful appointment.   The audiologist was cool and checked Lucie's ears first, then it was Alex's turn.  Not relaxed, but we did get it done.  Is it me or is everything we do with Lucie getting easier, and I am leaving with a smile.  If there was a manual, Lucie has read it.  If I'm not careful I'm going to start looking forward to going out places ;)

Now the kids are asleep, and finally I can crash.   Happy days.  There's no moral to the story today, I just felt like a natter - I am in danger of turning into Bridget Jones  - soon I will be starting my posts with my summary -  Day 42, no cigarettes, 2 beers, too many marshmallows and 2 of my 5 a day.

Friday, 22 June 2012

22nd June - What's wrong with him?

I am not usually stuck for a quick response to a question but this week I hesitated.  Whilst out on a walk, I had a casual conversation with a stranger who was asking me about Lucie, I mentioned she was an assistance dog and worked with my son. The next line was 'Why? What's wrong with him?'  I suppose a perfectly logical question but it caught me out.  My gut reaction was to say 'Nothing's wrong with him. Why? What do you know that I don't!?'.  Which in my eyes is true.  But this of course is not what he meant, even though it was phrased in a direct way.   So I gave the standard answer...'He has autism, etc etc.....blah blah blah'....

I walked on thinking about that question - 'What's wrong with him?' There is a lot to think about with those few words. The first to me is about disability and how we treat it. I have never thought that there is anything 'wrong' with Alex because he is disabled. In fact in my head, I think of him as just a bit broken, like your favourite teddy that has an eye missing, but you still love so much. It works, its just different. But its an interesting word - wrong - does that mean a disabled person is wrong, and the rest of us are 'right'. Maybe this is where society is slowly trying to drag itself forward. I think a lot about labels and classifications we apply to people, and what it all means. Parents feel very strongly about this issue, some battling like mad to avoid a label or diagnosis being slapped on their child, and others fighting like mad to get that diagnosis and label to help them. And all the time it battles with our concept of what is 'normal', 'typical', or any similar term you may prefer. It is a long way off but I will cherish a time when society moves to a point where we are not 'wrong' because we have additional difficulties. It seems to me at times we are going in the opposite direction, where the gap is narrowing of what we classify as 'normal'.

And at what point do we become 'wrong' - I suppose what I mean is what makes us 'disabled' - at what point is there something wrong with us - when it is significantly impacting on our life? Well that would then mean extreme shyness could be debilitating. Is it when we get diagnosed and are given an official label? Is it a life long permanent condition? We don't think of a broken leg as a disability. Is it when we need additional help - drugs, interventions, assistance - when we can't function alone...maybe that is where society defines us as disabled. I am sure there is a legal definition, but I think the reality is a blurred line, and we all have moments when we can't function, in a minor or major way. For me, I have my own minor stuff, it is when anxiety kicks in and I can't function, most often in a supermarket (I blame Tesco for having too much choice - just one type of baked beans is required - give me 26 varieties and my head explodes). I can't breathe, my throat goes tight, and my chest feels compressed when I am anxious. I often leave, feeling teary and unable to complete the task. (Discovered solution is a shopping list!) Simple anxiety, and so common. But apparently I am normal. The one thing I have learned on my journey is we all have something going on. I am not in fact telling you anything majorly personal by saying I struggle with anxiety, because as you read this I guarantee you can think of something you struggle with - social, emotional, physical - we all have stuff. So ability/disability I am not sure there is anything less black and white. It in itself seems a spectrum we are all on, so not sure there is ever a ' them and us ' - its just the impact on our lives.

I think the other reason the mans question hits my buttons, is because it raises a whole lot of feelings around how to answer it.  I have lived my life with two children with an invisible disability.  It has really opened my eyes as to how people are treated differently whether we can see their issues, and if we 'accept' what we see.  Even the NHS, Social Services and Education are guilty of predjudice between more physically evident disability over other equally serious conditions such as mental health conditions, Alzheimers and so on.  It has been a fascinating change for me this month to have a physical sign of disability, an assistance dog.  It has launched me from the silent lonely world that we have functioned in, to high profile disability, where the public can see there are issues, even if it is not evident what they are.  I have been treated like a VIP in these last weeks, being helped, smiled at, offered assistance, all because of Lucie.  This is in the same places I could go in the past, where I have felt isolated, embarrassed, stared at and self conscious, trying to deal with our challenges.  I don't mean to imply that a person with a physical sign of disability gets treated well, I am sure, sadly, it can often conflict that.  But a four legged cute furry sign apparently is changing how we are treated.  Maybe it is the confirmation that as a public we are kinder to animals than humans!  Paws for thought.  Maybe if we all walk round with assistance dogs, we will get treated better - despite 'what is wrong.'  I would be fascinated to hear how people with other disabilities have found their treatment in public  after having a dog.  Is it the ice breaker to bring the 'able and disabled' worlds closer together?

And to be fair I should answer the question - What is wrong with Alex - simple answer - he has autism.  But here's the thing - 600,000 people in the UK have an Autism Spectrum Disorder, around 1 in 100 people.  Yet how many people know what that means?  I still struggle to explain it.  There are text book answers, there is the media perception, where 'Rainman' or Savants (gifted autists) spring to mind - but the reality is much more complex.  Autism affects every individual so differently, so the answer to what is wrong is individual to each person.

The textbooks tell you that a person with autism has difficulties with communication, social interaction, imagination (routines and rigidities) and sensory challenges.  But our kids don't read textbooks, and they all have unique personalities which gives them each a very special version of their own.

For Alex, oh - I've just realised I don't want to share this bit - it seems a negative view of him. I'll type quickly....
- Alex has very limited speech, and understanding
- He is often in his own world, with limited interaction
- He has extreme sensory issues, with global sensory processing affected (complicated, I'll cover sensory issues another day!)
- He relies on routine and rigid behaviours to cope, and needs repetition
- He has sleep disturbance difficulties
- He has mobility challenges, toe walking, bolting, obsessed with moving vehicles (grabbing them!)
- He has a limited diet - and only eats cornflakes, rice crispies (both dry), gluten free toast, hovis biscuits, and on prescription a fruit compote and food supplement shake.
- He wears nappies
- and so on!

What I really want to share is his smile, his giggle, his amazing skills on a computer, and the fact he is the heartbeat in the family that can make us all melt in a microsecond. His singing makes me stop and listen wherever I am.  His ability to get away with murder with a cheeky smile is legendary. He makes us proud, humble, and always in pure admiration of his achievements.

There is nothing wrong with Alex.  He is just perfect.

Tuesday, 19 June 2012

19th June - A Perfect Day (video)

I thought it was time to share another little video.  Over the last couple of weeks we have captured a few moments on days out.  We have tried new places, enjoyed family favourites, and in general just smashing down the barriers that have held us back in the past.

The video shows Alex at B&Q, for the first time looking at items on a shelf, and calmly walking through a park in a large open area, (where previously any chance of keeping up with him would have been an athletic achievement!).  We also visited a nature reserve called Brockholes, which is where the kids play on an adventure playground, while Lucie sat calmly nearby just keeping her eye on things.  And finally, the really big achievement was Camelot Theme Park.  A massive task, where attachment is on and off, taking turns on rides, waiting, crowds, and the jousting show with horses. And no one was more shocked than us at one bark when the horses came out.  I thought it was game over, but she had her say then just settled down.  Go figure.  Though my personal memory of the day, was when I said to Dave to take the kids into the animal area alone, as there are free running goats etc. so didn't want to stress them or Lucie.  I waited at a bench for them.  I think the goats would have been easier than dealing with the escaped chicken, that was brave enough to be pecking within centimeters of Lucie, though with several treats I did manage to keep her sitting.  So free range chicken was off the menu that night. Chickens in a theme park - must I be prepared for everything?!

As usual, my limited technical skills mean, it may be easier to follow the link to You Tube, and not sure if it will play on mobile devices, but right now - it'll have to do, as its been a long day!

Wednesday, 13 June 2012

13th June Meetings and Drugs

Okay - that's a rubbish title for a post, but I have two things in my head - (unrelated!) I wanted to chat about today.. so sorry if you opened this post hoping to read about some wonderful meeting with me doing breakdancing on a table, off my head on drugs.  Alas, I am not that interesting - yet!

The first part is on meetings...I had 3 back to back meetings yesterday, and no way round it but to take Lucie with me.  Its new territory for us, in that shops and the community have been the focus so far.  But whilst we are trying to expand Alex's world, by default, Lucie also has to fit in with mine.  We have a little additional challenge with her in that she has separation anxiety.

Her background is a little mixed up, having spent a year in guide dogs training, living in Worcester with her puppy walkers, and staying in the guide dogs kennels (not something she coped well with) and was then moved to Sheffield onto the Autism Programme, where she lived with two foster families, and spent her days at the training centre.  Whilst she was really well cared for, the changes have left her a little unsettled and she doesn't want to be left alone.  Net result, I don't want to test what stress would come out of leaving her more than five minutes, but am told she would bark, chew things, and be unhappy.  As that is not my aim, we are giving her a very stable start, and will work with Support Dogs to develop her independence at a rate that works positively.  In the long term, I will be able to leave her for a couple of hours, but till then, she is my 'velcro buddy' ( a term used in schools when a special needs child has an adult with them at all times, rather apt to us too).  So if I can't take Lucie, I can't do an activity.   Fortunately, as I am officially a full time parent carer for Alex, and have not been able to work, because of the commitments for the children, I can do this.  I do volunteering work, but the great thing about that, is you take on what you can manage.   One day when I am feeling nostalgic and strong, I'll let you know about my life before autism, and how it has turned everything upside down -  but not something for today.

So back to the point - 3 meetings - First was 3 hours at a Carer's Centre, then a one hour meeting in a parents home where I do 'befriending' - oh heck - I won't brush over that one, its too good not to share. ....

I am sure many of you will know someone who would benefit from befriending. Scope - a big national charity - have a scheme called Face-to-Face.  Parents who have disabled children can volunteer to go on a 12 weeks training course, and then are able to offer a befriending service to other parents with disabled children who want to share their emotions and experiences.  The idea is that the feeling you get where no one can understand you as they haven't been there, is taken away, as we have all been on similar journeys in one way or another.  In truth it is like having a coffee and chat with a friend, but with structure and confidentiality that means you can be open, without a professional taking notes, reporting back or having any consequence.   When I was befriended a couple of years ago, it saved me at a time when life was too mixed up to make sense, and now I am hoping that I am through my worst, I can help others at that point. So I am a volunteer befriender.  And if you want to find out more here is the weblink....

...and so I spent an hour with a lady (in a house with dogs and cats!), and then finally I went to Alex's school for a consultation meeting with council officials on proposals to expand his school.  As I have gone on too long already, I'll be brief and say Lucie was SO good, just settled and waited while all the talking was done, and took all these strange places/people in her stride and I was so proud.  I have come to the conclusion, I could go out in scruffy jeans and no make up and no one would notice as they are all looking at Lucie and not me.  Excellent.  She is one girl I am happy to be upstaged by.

And so from meetings to drugs....

This is just something that has been in my head for a while.  Drugs and dogs.  If i write this incredibly personal stuff at the end of a long blog, maybe only the die hard followers will read it, and I will get away with not offending anyone on my views.  Lets try it.  

Drugs - by that I mean people drugs - in my case I am thinking of anti-depressants, (or anti anxiety medication) and ASD intervention drugs for our children.  I have been thinking a lot about drugs recently for two reasons.  A couple of years ago, I was in the downward spiral so many of us get in where there is no light at the end for us to see.  My doctor prescribed Citalopram - an anti anxiety medication.  I barely lasted 6 months on it, not because it doesn't work, it has superb results, I just am not good at taking medication as I get confused with who I am and what part is the drug.  Its part of being a control freak,  I need to know I am responsible. Having said that,  I have been back to my doctor 3 times in the last couple of years to ask to go back on them, just to help with coping with stuff that I am not good at.  Not unreasonably, he tells me to find other ways to cope (two years ago he advised me to write a book to deal with offloading emotion - I laughed, but ironically I guess that is what I am doing now).  I did find other ways to cope - the occasional glass of wine.  Not ideal, but its pleasant and it works!

Whilst I am toying with whether I can continue with this journey with or without medication support, I then find myself on a path whereby the consultant paediatrician recently reviews my son.  He tells me he thinks Alex is ADHD and would strongly recommend a course of medication to see if it will help peel him off the ceiling (!) I know - I shouldn't be flippant about such a serious thing, but really, my little Alex, a munchkin he is, and tying lead weights to his feet would only slow him down moderately at times :)  We were to discuss it further with his Paediatric Psychiatrist, and review.  Now I am confused.  Drugs scare the living bejeebers out of me, but I also hugely respect they have an important place, so trying to keep an open mind is challenging me.  We have our appointments and reach a point where we settle on Melatonin for Alex, a natural drug to aid sleeping (it is the natural hormone we all have to help us differentiate night from day, that ASD children don't produce enough/or does not function effectively).  A few weeks in and it is working really well for night time issues, so a great start, but we had another review with the psychiatrist two weeks ago.  I might add I hugely respect both these consultants.  I may not always agree with them, but do appreciate that it is always a discussion, and I feel we are being guided by very knowledgeable people, open to ideas.  The solutions available are rarely black and white, so good debate and reaching a consensus is how most of these appointments seem to go.

Its dilemma point for me.  If medication can help Alex concentrate and learn, it would be wrong of me to deprive him of that opportunity, but do I really want to embark on prescriptions, side effects and so on of more serious medication.......and then I pull my trump card - Lucie.  It occurs to me all the evidence of assistance dogs shows the calming effect on the family and the positive mental health improvements that can arise.  So I buy myself some time.  I tell the psychiatrist we should not explore other medication for Alex at the same time other changes in his life are going on with introducing Lucie, or we won't know what is having which effect.  We agree to wait 6-12 months to see if Lucie helps Alex be more calm, and review later.  And deep down I am thinking the same for me.  Lets see how having Lucie around makes me feel, calmer, more confident in challenging situations - who knows.  I know it is a big ask, but for me one of the real benefits of dog ownership could be giving us all a more natural way to cope with the stresses of daily life...and maybe - just maybe -  dogs and drugs both have a role to play, but for now I am hoping we can explore a more natural approach, and leave more intrusive interventions to fall back on.   We'll know in time!

Monday, 11 June 2012

11th June From impeccable to comedic

Just returned from a walk that made me giggle.  Tom started back at school today, but Alex starts tomorrow, so I needed to take Alex to drop off Tom.  A ten minute walk, but a big ask for Alex.  He has only done the walk once before, as it is confusing for him to take Tom to school, out of usual routine.  I had approached the headmistress at Tom's school 3 weeks ago to ask for permission to bring Lucie onto the school grounds for drop offs and pick ups.  Obviously no dogs allowed at school usually, but Lucie in a jacket can have access just about anywhere, unless there is good reason it is not suitable.  So as a matter of courtesy I asked the head's permission.  I just left it that if she had any problems, please let me know as I would need another plan to collect Tom.  Today was the day I had to take Alex attached to Lucie, and with Tom we bumbled in.  It was fine, though it is a very narrow path in entry so was a squish, but I think we managed well.

Tom's school is within the Cuerden Valley park area, so great walking all around. With Tom safely dispatched to school, and all going calmly, I decided to take a new approach and take Alex on a longer walk with Lucie in jacket, in an area neither of them had been used to being attached before.  It was going an absolute treat.  Bearing in mind this is both a free area for them normally, they both walked fantastically.  Dogs passed by regularly sniffing around, and both took it in their stride.

So far so good.  And then we came to a lake area where I could hear lots of ducks and geese.  This is a place we can divert around, which we normally do, as Alex is fairly keen to get in any water he can, but with being attached, I thought I would brave the route.  A man was feeding the geese a whole pack of bread rolls from his BBQ leftovers....Alex has only fed ducks once before, an odd concept for him, and even touching food can be challenging.  So I approached to show Alex him feeding the birds.  He had a spaniel with him sniffing all around, but even with food, and dogs, Lucie remained in control.  He offered Alex a roll.  Before I could intervene the whole roll was thrown in one lump.  Ok - fine, not a bad start.  So I helped from there on.  Lucie sat, and Alex took bits of bread from me and giggled, flapping with excitement, throwing them in the lake.  The man kindly left us a huge pile of bread and carried on his bike ride.  The next few minutes would have needed an orchestra and mood lighting to capture the beauty that was sharing the simple but special act of feeding the ducks and geese with your son.  Impeccable behaviour all round, and I was feeling very fuzzy inside......

.....and then.....

You could not write a comedy sketch that could capture then next five minutes.  From between the geese, a dogs head appeared, and parting the birds, a beautiful chocolate labrador with tennis ball in mouth, swam directly towards us.  I looked up to see the owner on the far side of the lake running as fast as she could to get around.  Not fast enough, as said soggy doggy launched out of the lake directly at Lucie, Alex and I and stampeded to the bread rolls consuming them in 4.2 seconds.  I now was caught in a tangle of leads, dogs and bread everywhere.  Lucie forgot all 2 years of training in a millisecond, and thought Christmas had come early.  Birds were squawking, owner shouting, and Alex and I just stunned as I attempted to control the chocolate labrador who was under our feet.   At the point at which I realised the labrador would not need to eat for another week, and I had officially lost all control, it seemed a giggle and the reset button was required.  The owner apologised, though I think we both just witnessed dogs still have instincts that overide all human logic.  All fun, and brilliant Alex was not surprised by any of this.  So after an untangle we regrouped and completed a really wonderful walk.

Note of the day - dogs appear from all directions, next they will be falling from the sky :)

Saturday, 9 June 2012

9th June - Some days don't go to plan

Well I didn't think things would keep going at such a brilliant rate for long, and looks like I am hitting a few walls.  Or maybe my usual ridiculous expectations of myself are a wake up call to the reality of what I am trying to achieve.  Since the pub visit, we have had a few hiccups.

Firstly on Sunday we took Alex to Astley Park in Chorley, which has a gorgeous cafe. We decided a little walk first before attempting the cafe would be wise to get the energy levels down on both child and dog.  It sort of backfired when Alex went on the swings and slides.  Lucie waited beautifully while he played, but Alex has no 'end' button.  He could keep going forever.  So when we tried to move on, he went into full meltdown.  Lucie was very patient, but we were struggling.  We did persist with plan A with the cafe, as we had the ipad as a distraction for Alex when he sat down.  Once settled, all went well, and we could have stayed an hour.  So it wasn't too bad, but I think it unsettled Alex, as the next day when he saw the blue jacket and lead for Lucie, he went nuts.

I am not comfortable as this is all supposed to be a positive experience, and already Alex is refusing the jacket work.  The next outing was with Michelle as a training session.  I suggested B&Q as it involved a car trip, and could include a cafe.  On arrival at the store Alex refused to come out the car, stressed and not happy.  It did wear off, and we even tried the cafe, which went okay.  Again, Lucie doing pretty good, but Alex not on top form.

Review time for me, and I started to think I need an activity Alex really wants to do, that has a clear start and end he can cope with - cinema - smashing idea.  So with all the naive bravery I can muster Alex, Lucie and I go to Vue Bolton for the Kids Am film - only £3 entry, so no sweat if we have to scarper early.  All was going really well, Alex very chipper, and happy to be attached etc, and calm entry to cinema, only to find out it is sold out, and the next film isn't for another hour.  Doh!  In fairness, the lady at the cinema could not have been more helpful, and was doing all she could to assist us, so at least we felt welcome and well cared for.  On trying to leave Alex went into stress mode.  I stood like a complete muppet in the middle of the shopping mall, just gathering my thoughts.  I decided on the Starbucks next to us, to see if we could buy time till the next film.

On entering, Alex displayed an exotic meltdown, very vocally.  (Fair enough - I had shown him the cinema then turned round to walk into a place of no interest to him). Yet again the staff were lovely, offering to help take my drink to the table, and helped me settle.  It made me feel welcome regardless of my chaos.  I sat down, tried to calm Alex, which took a few minutes, and Lucie was a star, just settled and calm.  Meanwhile I am fighting tears, worried Alex's crying is disturbing people with their overpriced latte's. Though there was some consolation that at least with Lucie with us, it was obvious Alex had issues, and I didn't get the usual  looks criticising a parent unable to get a grip on their child. Next thing I know Lucie perks up and I notice a Guide Dog puppy (and we are talking Andrex cute) sit at the table next to us.  Talk about pile on the challenges.  Having said that all went well.  So once Alex was calm, I decided to attempt the cinema again. Only this time I find out prices were now not £3 but £12.  As the morning was so strained and I thought Alex may only last a matter of minutes, this seemed too much, so I decided to quit while we were behind.

I drove home feeling totally wiped out and upset, with a sense of failure that Lucie had been dragged from pillar to post without me having direction, and most of all I had not given Alex a nice experience.  At times like this I wished there was a way to give Alex a treat.  If only he liked (or ate!) normal food, I could have given him chocolate, or taken him to McDonalds, or anything that regular kids do.  But none of that works for Alex, so I gave him the only thing I had which was my mobile phone, so he could listen to music.  I even thought - should I try going somewhere else, a ball pool, anything, but all these are problems for Alex and more likely to end in drama.  So I drove home dejected and down.  I parked up thinking, here we go again, home to the only thing Alex likes, the computer.  Mmmm.  But then I realised I had one more trick up my sleeve - Lucie.

I left Alex and Lucie in the drive, showed Alex I was leaving the blue jacket in the house and grabbed the flexi lead which is used for regular dog walks.  It was pouring with rain, but I didn't care.   I took them straight out for an hours walk in the woods.  Within seconds it felt right.  Lucie and Alex played wonderfully, and we all just mucked about and did what kids dogs and mums should do.  Be silly in the mud and rain.  It felt great.  So we came home in a different mood, all caked in mud and chilled.

Lesson learned this week.  Even Lucie doesn't have the miraculous ability to make me a more organised person - and more importantly, the benefits of her are not just the jacketed formal work, but can be the down time of just play and nonsense.  And in all my failures trying to give Alex a good outing, there is the huge consolation that the dog bits were fine, and it appears that sometimes the public really want to help and make your day easier. All things to focus on, that in moments when you feel your world is crashing down, there really are people out there who can help, and dogs who stay calm through it all....result!

Tuesday, 5 June 2012

5th June - pint of real ale for Alex please.

Today I woke up thinking - 'What can we do today?'.  A strange feeling as I can't remember a week when I had such kid-like optimism.  Most weekends have been a long list of things we can't do, and spending the first hour of the day planning how to do basic family things while taking into account all the difficulties and challenges involved.

Yesterday was another ground breaking day - we took Alex to the pub for the first time!
(I am aware how many explanation marks I am using in this blog, one of my husband's pet hates in punctuation, but the fact is the excitement I feel, means I want to end every sentence with one, and a smiley face :)!)

As you may have guessed by now, it would never have entered my thought process to have taken him before, but right now I am feeling so brave with our new companion to help us.  We just went to a local we could walk to, which has a great play area, and was all festive with a live blues band and geared up for the Jubilee weekend celebrations.  Of course, had I realised that, I would never have suggested it, as it was so busy, no seats, and worst of all - a bouncy castle.  My fear.  Don't get me wrong, Alex loves bouncy castles, but problems aren't when your kid doesn't like something, its when they like something to the point of an obsession you can't control.  But today we were lucky, there was no ogre standing by charging a pound for every ten minutes use, it was a free for all, and Alex got his money's worth!

So we ordered drinks, and I stood with Lucie while Dave did his best to keep up with Alex playing. (We, as muppet parents, always forget something.  Today it was Alex's drinking cup, he can only drink from a lidded cup, but I was even more pleased when we got him a glass of water, and he coped really well with a straw.  An emerging skill which can be hit and miss, but today, a hit).

Apart from this being a first, the real reason I am sharing this story is to let you know how differently I felt.  Alex was still being 'very autistic', running around relentlessly, and high maintenance, but for once I was not stressed and managed to enjoy a lovely afternoon.  The reason it felt different to me, was no one seemed to be looking at Alex, but they were all looking at the impeccably behaved Lucie, ooing and aahing.  The jacket she wears attracts great attention, but so far all positive.  I was so proud to stand there with this beautiful canine.  There were several other dogs around, but ours was the star for me.  And I even had the naughty pleasure of watching other people's uncontrollable kids - ha ha, I love wicked judgement.  And when it came to leaving and attaching Alex to Lucie, rather than us meekly leaving after a stressful outing, I felt relaxed, and proud to have been out in our community.

And right now Dave is out having snuck off with Lucie, and I am looking forward to suggesting to him that we take Alex to a cafe today to try sitting down at a table - why not?!  Tom is with his grandparents for a couple of days, so I am grabbing every opportunity while we have the first time with Alex alone, and can make such great progress.

Sunday, 3 June 2012

3rd June... and what happens if Lucie dies?!

3 posts in as many days - it must be a rainy bank holiday weekend.

I have been asked many questions recently and thought I would answer generically a few things I get asked a lot about the whole assistance dog situations.  So in tribute to the ubiquitous FAQ's on every website (which don't answer anything you want to know), here is my contribution.  And as a by the way - if you want to ask anything - just post a comment, and I'll do my best to answer as a novice in this world.

I am going to start with just one question which seems to be a hot issue which puts people off venturing on this journey.

Q. What happens when Lucie retires?  (Or more dramatically - what if she dies?)

A. This is really a question about seperation and what happens between Lucie and Alex in the event of the working relationship ending.  The first point is the short answer.  All assistance dogs (from Support Dogs at least) retire at 10 years old.  So maximum working life for Lucie is 8 years.  And then?  Well Lucie could retire before due to medical or other reasons, but either way people express their concern over the partnership ending.  My first response is, while for all of us this could be extremely painful, Alex doesn't operate in the same social/emotional structure as us, and relationships take different forms.  So a dog dying etc would not be comparable to how it would affect a more typical person.  In fact I would go as far as to say that I think the learning that could come from issues arising from animals getting ill/dying is part of the crucial learning for Alex.  Helping him cope with his emotions at these challenging times could help him prepare for other big events such as losing his parents....but lets not dwell on that too long!!

What are our options...well, this is unchartered territory in the UK so far, as no partnership has been going more than 5 years, so there is no track record.  But as every dog/child relationship is unique, so is the approach taken.  These are the possible outcomes;

Lucie retires and becomes a pet dog to our family,
Lucie retires, returned to Support Dogs and is re-homed as a pet dog elsewhere, and is either not replaced, or if deemed suitable another working dog is placed with Alex
Lucie is no longer suitable to work with Alex, but is still a good working dog, so is reassigned to another partnership,
Lucie retires and remains a pet dog with our family and Support Dogs place another working dog with Alex (the most challenging option as usually a working dog does not reside with a pet dog, but is possible).

The real point here to make is also, this is not like a Guide Dog, whereby the client can benefit from the long term skills of an assistance dog.  In the case of Autism Assistance Dogs, the real aim is to develop the skills of the child via the dog, to a point they are able to operate independently.  So a lifetime of dog assistance is not the aim, but more a stepping stone to enable Alex to help himself.  The experiences he has with Lucie should teach him skills and broaden his experiences to a point the dog is no longer needed.  It may be that in the long term a pet dog can fulfill enough of his needs.  So with good work, we can help Alex deal with difficult situations with Lucie, that one day he can manage on his own.

So my view on this issue, is don't act in fear of a situation such as grief.  Embrace it, as it is part of life and living.  If Alex experiences loss and grief, then by default it must mean he has experienced love - a connection or bond, and that would truly be worth having in his life.

Saturday, 2 June 2012

2nd June - First Asda Trip!!! (video)

Okay - today I cried...emotion doesn't always get the better of me but today it did.  We took Alex to our local Asda for the first time.  A previously challenging idea we wouldn't normally attempt was an absolute pleasure.  Here is a quick video of how it went.
(Not playable on mobile devices)

I am so proud of Alex and Lucie.  One week together and already we are breaking the barriers down.  Enough said.

Friday, 1 June 2012

1st June - Attachment Walking

This week was Alex's first training for attachment walking.

We had two sessions on Monday and today, and whilst Monday was a little hectic, today went so well, and you know when you really enjoy it that it must be working.  The plan was Dave would stay at home with Tom, whilst Michelle, me and Alex did our thing.  But he came along to take a couple of photos, and it was really good as it was more like our usual family walks with all of us, only this time we had Alex totally calm!

This was a great example of Lucie doing her stuff, whereby Alex left the house in meltdown having to part with the beloved ipad, but before we even got out of our close he had forgotten all his woes, and just got distracted by watching Lucie walk.  Even better was Alex naturally fell in with Lucie's commands.  Before long when Lucie was given the 'to the kerb' command, to which she sits and waits before you cross a road, Alex naturally stopped and picked up his handle to have a controlled walk across the road.  Magic.

In other news this week, I took Lucie to a cafe, with Tom.  We were meeting a couple of my friends, a semi informal meeting, so needed to do some talking.  The cafe was right by a duck pond, so was testing the 'leave it' command, but she did great.  2 hours, and I was happy.

Another highlight this week was Alex in tantrum in the back room, and Lucie just plodded in and lay down next to him, just chilled.  It distracted Alex and changed the mood.  Top trick.  And the cat/dog thing is going fine too, to the point the cheeky moggy decided to see if she could tuck into Lucie's breakfast.  Nice try - no cigar.

One week in and I am made up with the progress. The tough bits have been the regular dog walks, pulling on the lead, and dealing with her excitement at visitors, but one thing at a time.  Michelle keeps giving me good tips, so will chip away till we get there.

I need to surrender the computer so Dave can watch his beloved Wigan Warriors playing now (rugby league - don't ask, it was part of the marriage contract) - so as they say in text speak....ttfn.....and I have a chilled New Zealand Sauvignon Blanc with my name on it....