Do I Tell Him?

My son does not know he is autistic. He doesn’t know what autism is, doesn’t know he is different and doesn’t know it is a life long condition that could define much of what happens to him in the future. And why should he? Though aged five, he is in many ways more like a three or four year old. Trying to explain something so complex seems not only inappropriate but also probably impossible. His relatives don’t understand it, so why would he? Come to think of it, do I really understand it? Would my son even begin to be able to grasp what it meant? And would we be able to get him to stand still long enough to explain it to him?

More importantly, there has simply never been a need for him to know. Watching him today, on a good day (no school and the freedom to do the things he wants to do), he is simply the most happy, carefree child you could hope to meet. His laughter is infectious and his sheer enthusiasm for life a joy to share. Let’s not forget that this is a child who can turn in a heartbeat into a little devil, but even at his most monstrous there is never a sense that being thrown a confusing label would in any way calm him down. My son does not know he is autistic, and that has always been fine.

Until now.

I thought we’d have several more years before this became an issue. I knew that the day would come when it was important for him to know and understand that he was in some ways different to others. We would need to explain what autism was, how it was a part of who he was and how some of the things he did, said and felt were influenced by it. There would be lots to share about how he learnt, how he dealt with other people and why he found some things difficult. He would have questions, and I would have the answers. Or some of the answers. I would not be able to tell him why he was autistic. I’ll never understand why that has to be.

It’s not like it’s some sort of secret. We do not hold back from disclosing our son’s autism to people and we are certainly not ashamed, embarrassed or in some way reluctant for anyone to know. We do not worry about him being labelled negatively or becoming wrongly defined by knowledge of his condition. Understanding autism is central to understanding B and we have no problem with who knows. Because if they know, they can begin to understand. And the same applies to my boy. The day would come when it was the right time to tell him. My guess was around the age of seven or eight.

So when my son recently asked him mum, “Why do I have a helper at school?” we felt somewhat unprepared. He had never questioned his one to one support in school before- it had been a feature of school life pretty much since his first day. My son is not a child who pays much attention to others. I doubt he has ever looked around the classroom and thought, “Why is she only helping me?”

Upon hearing this, my wife felt that the time to tell him could be fast approaching. It would be the first of many questions she said, the first awakening of a curiosity and awareness of his school situation. The first awareness of his differences. I dismissed her concerns. “He’s not even six yet.” I argued, “Wait til he’s seven at least.”

We left it there, but my son did not. Last night, he turned to his brother and asked, “Do you have a helper at school?” followed by, “Why do I have a helper?” Then, to the sound of our heart’s breaking, he said “Am I difficult?”

“No son”, I said, “You’re special.” (what a loaded word that is). “It’s time.” said my wife, as she followed us into his bedroom. I felt a chill run up my spine and a lump form in my throat. Never mind my son being ready, I was not ready for this.

My wife was. She has been thinking carefully about this and getting some advice. But like my own feelings towards the matter, the advice was mixed. B’s key worker from Autism Outreach felt, like me, that he was too young to really know or understand what we were telling him. It would be meaningless and possibly not something he would be able to deal with appropriately. I have visions of him running around the school shouting, “I AM AUTISTIC!” and asking everyone he met if they were autistic. Recently, on ‘Britain’s Got Talent’ a young comedian joked about his disability. Understanding it was funny (but not really getting it) and hearing the word “disabled”, he decided to repeat it lots and laugh whenever he did so. He did so in the innocent belief that others would find it funny too. He wasn’t to know it was inappropriate and it was a passing fad. But I can’t help thinking of it when I consider telling him. I think he’s too young to expect him to be able to handle something like this, and Autism Outreach agree with me.

At least, some of them do. Two weeks ago, whilst on her parenting course (also run by Autism Outreach) my wife raised the issue of disclosure again. This time, the answer was different. They felt that any opportunity to talk about it was worth seizing upon, particularly if he had raised the issue himself. Their argument goes that if our child is bright enough, and aware enough to ask these questions, then we should not lie to him. We should be open about it and honest and we should get it out there. My son should grow up knowing about autism and knowing that it is nothing to be worried about. It should be a part of all our lives from as early as it is possible for him to know about it, because then it will not be an issue, it will just be our normality. As a result, he will quickly come to accept it and better understand his world. It will help us to help him make sense of things and it will mean we can answer difficult questions like, “Am I difficult.”

It’s a convincing argument. Sat there on his bed, my wife was ready to tell him there and then. But looking at my beautiful, innocent child, I simply could not let her. When we tell him, we will have turned a major corner. Some of that innocence will have been lost forever; our little boy will be changed forever. His perfect little bubble of happy, naive innocence will be burst. You have to let your kids grow up, I know, but how can I expose him to such things so early on in his life? Sensing my concern, my wife backed down. But we have promised to discuss it further.

So, do I tell him?

Product Reviews Round-up

Over on the Product Reviews page are a handful of new reviews, including an emotions board, interactive world map and a rather wonderful app involving small blue people.

As ever, the products reviewed have made a genuine impact on my son’s life and are reviewed from our perspective as a family whose lives involve autism.

I hope you will find them useful.

http://autisticson.wordpress.com/product-reviews/

B’s Dad

A request for help

I’ve been asked by journalist Sally Simmonds of ITV Meridian to forward a request for assistance. Sally is currently researching a piece about the effects of diet on autism. She would like to hear from readers in the South of England who may have experience or strong feelings about dietary intervention and the extent to which it helps those on the spectrum.

If you feel you can help she can be contacted at sally.simmonds@itv.com

Thanks,

B’s Dad

Handling Emotions (Part Two)

It’s haircut time, and as usual my son is painting the hairdressers with noise. He’s not adverse to having his hair cut but he is always a loud, boisterous customer. Recently, we let them know he was autistic, which surprised his hairdresser for a moment, before all the pieces slotted into place and it all made sense to her- a common reaction. As she somehow manages to cut the hair and not the ears of her moving target, my son happily yells out whatever random thing is currently foremost in his mind. He’s the centre of attention: audible above the hair dryers and the ringing phones and the other chatter.

Suddenly, he realises a middle-aged woman is staring at him. “Hey, old man!” he says to her, “Why are you staring at me!” Cringing, my wife tries to silence him, but my son has realised that everyone is staring at him. And you know what? He doesn’t like it.

Something’s happening here. My son, unbelievably, is feeling and recognising a sense of self-consciousness. This is possibly the first time he has experienced this, or at least the first time it’s ever been an issue. My boy doesn’t do self-consciousness, he does devil-may-care, blithe indifference to what the world thinks. It’s a commendable attitude to have and one that has served him well. But it’s also indicative of an immaturity of emotions and a delay in developing the neurotypical feelings, good or bad, that most of us develop. So in that sense, his discomfort is a sign of progress.

Episodes like this one are indicators that its time to start helping B recognise a wider range of emotions. If he is to learn to handle his emotions, he must first begin to understand them. With this in mind I began looking for resources that might help. As ever, Tony Attwood’s ‘Complete Guide to Asperger’s Syndrome’ has been a valuable guide. Attwood suggests the use of an ‘Emotional Toolbox’- that is, a set of strategies or tools to help the child manage emotions. He categorises them into physical tools (for ‘energy management’), relaxation tools, social tools (pets, social contact, online contact), thinking tools and special interest tools. I’m not going to plagiarise them all here but what I would say is that most of the strategies I am about to describe below fit into what Attwood describes.

Part of understanding emotions comes from having the vocabulary to express those emotions. There are plenty of apps for phones and tablets that have photos and images of different facial expressions and emotions which are interactive and fun. The problem with using these is that my son would know that he was two taps away from playing Angry Birds, and they simply would not be able to compete. I did come up with a resource myself that encourages recognising different emotions. Over on the resources page is an interactive PowerPoint I made that encourages the user to categorise different emotions. My son enjoyed using it and, though he at first got lots wrong, has since begun to know that ‘anxious’ is a sad emotion or ‘furious’ an angry emotion. Lots of this comes from learning them by rote (although they are generated randomly) but that’s okay. My son does not have an intuitive grasp of things like this, so many things involve a more cognitive, learned approach. It’s a good job he’s such a bright little spark!

I also purchased some emotions cards from an ebay seller called ‘Extra Special Friends’. I’d like to give them a plug because they have some excellent resources in their shop that are worth a look. The pack I purchased has cards with images of faces and emotion words to help identify what a child is feeling. We haven’t yet used them much but look out for a proper review soon.

At school, B’s TA and teacher have also noticed a need to help my son identify different emotions and a growing ability to be able to do so. Before now, we all felt that his age, maturity level, understanding and vocabulary were barriers to being able to tackle this. But increasingly he seems ready to start learning. Either that or the screaming tantrums have simply become too much for them to bear! With the help of Autism Outreach, they are introducing a TV series made for children on the spectrum called ‘The Transporters’. It’s kind of like a creepier version of ‘Thomas the Tank Engine’ and has various types of transport (boats, cars, buses) with real faces superimposed at the front of the computer animated vehicles. I find it mildly disturbing: all the characters look constipated and I wouldn’t trust ‘Barney’ with my child for a second (don’t believe me? Go check it out here). But thankfully I’m not the target audience. It will be interesting to see how my son responds to it.

School have also made another rather brilliant breakthrough in helping B handle how he feels. It began as a strategy for helping him develop his concentration skills (look out for that post soon) but had the bonus effect of helping my son stay calm and in the right frame of mind for school. It’s a simple but effective strategy: they let him have a break, outside in the playground, pretty much whenever he likes. The breaks last only five minutes but in that time he runs off some excess energy, gets a little buzz out of playing (albeit on his own) and returns into school feeling happy and focused. By all accounts it has worked wonders.

I’m delighted with the school’s openness to try out this strategy and pleased that it has worked for them. Oddly, this has only been possible because of B’s unique set of circumstances: he is in a mainstream school with full-time one to one support. Consequently, because he has this support and because he is the only child who needs it, they are able to let him do it. We have friends whose son is in an MLD special school, where the staff/child ratio is 1:4. There is no way that would be able to happen there. Ironically, the fact that there are more children with that need means it is more difficult to achieve. But for B the staffing is there, it works, and everyone benefits. Except perhaps his classmates who, seeing him on his umpteenth break of the day, sit wishing they too had autism, or at least a one-to-one helper.

Back at home, another successful strategy has been the creation of ‘The Den’. This arose after B took to sitting in a large cardboard box we had lying around and using it as to place to play on his Kindle and relax. He seemed to enjoy hiding away in there and blocking out whatever was bothering him about the world (usually me trying to get him to eat something, get dressed, or stop using the banister as a balance beam). He’s always had his bedroom to go to, with cushions and sensory lights and books and toys, but I think it represents bedtime too much, and has never been a place he chooses to use much.

But in his brother’s bedroom is a cabin bed, and underneath it a space that we have been able to convert into a den. This meant losing lots of valuable storage space, but with a little thought and rearranging of furniture we were able to clear it out. The boys now have a private, cosy space, lit by lamps and furnished with lots of cushions, a tv and dvd player and chargers for their gadgets. It has curtains across the front and posters on the wall inside. And they love it. It is a calming, comfortable, relaxed place to be in and a welcome addition. And my wife and I have got our living room back!

Other strategies used to help B understand and handle his emotions include (at school) social stories, the use of a timer, visual timetables and more than anything else, talking and communicating with our child. He’s old enough and aware enough to be able to answer the question ‘how do you feel?’, even if giving the right answer is difficult.

Mind you, don’t we all struggle to articulate how we feel sometimes? I know I do. Often it is only in retrospect that I can recognise what I was feeling at a particular time, with the benefit of hindsight. One such occasion happened this week.

We had decided to go out for a family meal for my birthday. There was no question that the restaurant in question would be Frankie and Benny’s, which is about the only place other than McDonald’s that our son will tolerate. Like the good autism parents that we are, we prepared our son for the meal by telling him our plans the night before. It would be the usual restaurant and the usual food, we explained. It would be different for a Wednesday night, but not a problem.

It was a problem.

B decided he does not like Frankie and Benny’s. Specifically, he does not like the fact that the lights dim (slightly), cake’s are bought out and the staff sing ‘Happy Birthday’ at tables, followed by the sound of Sir Cliff singing ‘Congratulations’. We had no plans for this to be a feature of my birthday, but B became genuinely anxious about it and increasingly upset about going. Surely Cliff Richard isn’t that bad? We left it until the day of my birthday to broach the subject again, but clearly we had gone beyond the point at which my son could be talked round. It was looking like the visit was off.

My wife did not want this to happen, and despite my protestations, B ended up at his nanny and grandad’s house (where he was very happy). We went to the restaurant with my eldest son and, for me, a slight feeling of guilt. Once inside, a troubling thing happened. As we sat at our table, I noticed a completely different family dynamic. My wife was smiling, laughing and joking with our eldest. There was relaxation, high spirits and a party mood. It was completely different to a visit there with the four of us. Those visits are always fine but they are also pressurised and stressful and anything but relaxing. This time was different, and it was different because B was not there. I am deeply uncomfortable with saying this, but we were better off without him there.

At the same time, B was better off where he was, so everyone was happy, I guess. But I have been unable to shake the guilt I felt at enjoying myself at the exclusion of B. I am uneasy at how this taste of normality felt, because I liked it and it was fun and it was quite unlike how our lives normally are. I was left feeling that we must not indulge ourselves in this way because it’s not fair on B and it’s too painful a reminder of what might have been. We are not meant to have lives like that. Most of all I felt confused and conflicted. Tell me to pull myself together.

There is one other strategy that works wonders, one I’ve mentioned several times before. If the desired outcome is for B to be happy, calm and able to control his emotions, just get the grandparents over. For bank holiday weekend my wife and I had a break in London and the two sets of grandparents took it in turns to look after the kids. And of course they were angelic. Ditto this weekend, when we had a family gathering at our house (twelve adults, four children). The kids were great and B was relaxed and happy throughout. Attwood identifies how a key person or persons can be the child’s ‘mood repairer’- someone they can relate to who don’t induce stress and will help him relax. Perhaps that is what is going on here.

This morning, with just the four of us, B turned into nightmarechildfromhell and life was very difficult again. I most certainly was not his mood repairer on this occasion and, apparently, he hates me.

I can handle it; by tonight I’ll be his number one again, so long as I don’t make any demands of him like, for instance, aiming his wee in the toilet and not on his foot. Life with an autistic son is an emotional experience, but with time my son will come to understand and manage his own emotions.

And then he’ll become a teenager, and it will all start over again!

Handling Emotions (Part One)

My son has been in bed for at least forty minutes before his piercing, desperate scream echoes down the stairs. My wife and I exchange weary but anxious glances. What now? He can’t have fallen out of bed; we’d have heard. A nightmare? I’m not sure he even dreams. Perhaps he’s awake and has been chewing his bed again, only to get a splinter. We both race upstairs. As we get closer to his bedroom the screaming has turned to sobbing. Huge, broken-hearted, end-of-the-world sobs. What can have upset him so much?

We find him sat up in bed with tears rolling down his face, puffy eyes and a streaming nose. In his hand is his wall calendar. B’s calendar is very important to him. It’s where we prepare him for what each day has in store. For the child who likes certainty and predictability and measurability, it is an important tool. Each day he reads it and ticks off the day. He’s looking at April, and he has found something he does not like.

Like April fools, we had forgotten to cross out one of the days. Judging from his screams, you’d have thought this was a gross act of negligence on a par with failing to feed, clothe or love him. Call Childline! There is a serious breach of parental responsibility to report!

Another way to look at it is as a massively over the top, unnecessary emotional reaction to the most minor of incidents. But that’s my son. And that’s autism.

Many of my preconceptions about autism have been proven wrong over the last few years. Towards the top of the list would be the myth of autistic people being rather cold, detached, distant, aloof or having a ‘poverty of emotion’. I don’t recognise this in my child at all. Spend a few hours with my son and I challenge you to suggest he is somehow lacking in emotion. My son is over-flowing with emotion. He is frequently an explosion of emotions. In fact, he’s like a volcano. We should have named him Vesuvius.

B is a very emotional child.  If there is a deficit in my son, it is in his ability to handle his own emotions. His moods swing from deliriously happy to delirious in a heartbeat, and back just as quickly. It’s as if he only has these two settings- extremes at polar opposites to each other. It’s as if the subtleties of emotions in between happiness and wretched grief are by-passed. Life with an autistic son is extreme, and so are my son’s emotions. 

These extremes of emotion have become increasingly difficult to manage as he gets older. In fact, we’ve reached the point where help is required. We thought we were done with parenting classes after the pre-natal course we attended, but no. My wife is currently attending a class run by our local Autism Outreach team. She was reluctant to sign up, as it felt like an admission of defeat; unlike all the other mummies and daddies, we need help in raising our child.

In actual fact she is enjoying the course. Her homework last week was to think of a feature of her child’s autism that was a positive quality. Her answer was that he does not suffer from many of the negative emotions that we all experience: embarrassment, jealousy, anxiety etc. Most of all, our son seemingly has no inhibitions.

Whilst I agree with this (and have written the same things in this blog), I’ve come to believe that those emotions do exist in our child but he does not have the vocabulary to express them. Tony Attwood’s ‘The Complete Guide to Asperger’s Syndrome’ covers this in good detail, and has been a constant reference for me of late. Attwood identifies how ‘the person with Asperger’s syndrome has a clinically significant difficulty with the understanding, expression an regulation of emotions‘ and describes the ‘inner world‘ of emotions as ‘uncharted territory for people with Aspergers, which affects their ability to monitor and manage emotions, within themselves and others‘.

Lately the inability to handle emotions has begun early in the day. We always wake up in the same order in our house. My eldest son has a freakish, definitely ungenetic predisposition for waking up really early, so he’s usually up by 6am. En route to the bathroom he will accidentally wake up my wife. At some point I will wake up, which just leaves B in bed. Eventually he starts to stir, or we wake him. He is always slow to shake off his sleepiness and it can be a good 15 minutes before he’s alert. During this time, and afterwards, we wait with baited breath. Sooner or later, my son will ask, “Is it school today?” The answer “Yes” is an instant meltdown trigger. “Noooo!” he will scream. What follows is a challenging, explosive period of cajoling my son into eating his breakfast and getting his uniform on, while he struggles to handle the awful news that schools are open on Tuesdays. It’s easily the most difficult hour and a half of our day.

Dealing with disappointment, or any kind of negative experience, does not come easy to my son. In many ways, what we are dealing with is an 18 month old. Like an infant, my son’s vocabulary for expressing his emotions, and his ability to deal with emotions, is immature. When you can’t get what you want, and when the words to express what you want are not there, then the remaining option is to scream. My son is highly verbal these days, but his intense need to be in control sees him constantly encountering obstacles which upset him. This weekend has seen many typical examples of this. Sitting at the table to eat, using the bathroom, putting down a game or gadget have all been triggers for an emotional outburst. Google Earth not working properly? Cue Screams. Been denied a freeze pop (because it would be your fifth in a row)? More screams. Onions snuck into your cottage pie? Let rip with all the fury you can summon (there are not actually onions but he is deeply suspicious of his mum’s attempts to trick him into eating vegetables).

Unlike an 18 month old, my son has a finely matured set of lungs on him that can bellow out his annoyance or anger, not to mention the words to go with it. It’s all very well having an 18 month old, but we’ve had one for ages. We want a five year old now.

I had the pleasure today of sitting with him and making him do his homework. Excuse my language, but fuck me, it was a challenge. How many five year olds scream at the top of their lungs over being asked to spell (oh the irony) ‘throat’? My wife is finding it particularly difficult to handle my son’s emotional outbursts at the moment. Detaching your own emotions enough to be able to deal with your child’s raging meltdown is a real challenge. It’s so difficult to remain detached and unaffected when your poor child is so upset. The problems with handling emotions are not limited to our son.

In addition to being unable to manage his own emotions, my son has difficulty with the emotions of others. He hates seeing people upset and otherwise struggles to identify how a person is feeling. On occasion he has patently failed to see that I am furious with him and will continue annoying the shit out of me. He just thinks I’m pulling funny faces again.

But as extreme as my son’s emotional reactions can be, they are also short-lived. B never sulks or broods or lets his bad mood continue. Often, it will be over as quickly as it began, and forgotten about. On many occasions I’ve watched my son switch from apoplectic rage to overwhelming joy in a heartbeat.

What’s more, my son knows when he is happy and he knows when others are happy. For a boy who unintentionally causes so much grief, he is a pleasure seeker of the highest order. And part of that pleasure seeking includes the smiles and laughter of others. B hates anyone being upset- he can’t handle it- but takes great joy in making people laugh or sharing a funny moment. These are the times we get eye contact and interaction- if there is a hilarious comment or noise or situation on the end of it.

99% of the time the things B finds funny are random and bizarre and unique to his sense of humour. But he wants to share them nonetheless. Surely that represents an ability to understand emotions? I think it does. It is an example of my son wanting to connect on a very human, emotional level- a shared moment of closeness.

Mind you, that closeness stops at kissing. Trying to get a peck out of my boy is impossible. He’s like Julia Roberts’ character in ‘Pretty Woman’- he has a ‘no kissing’ rule (can’t believe I just compared my son to a prostitute). For once, I’m putting this one down to being five and having nothing to do with autism. I wouldn’t want to kiss me either.

As ever, we will do all that we can to help my son navigate this particular aspect of his life. I sometimes worry that these blog posts risk sounding like I can’t stand my son, but this could not be further from the truth. My son means everything to me, and making sure both my boys have the best life possible is the reason I was put on this earth. Next week I will try and share some of the things I’ve learnt about handling emotions, and some of the strategies I’ve come across.

Forty Things I Didn’t Know Five Years Ago

Five years ago my youngest son was just six months old. He had not yet begun to demonstrate characteristics that were a cause for concern or that suggested his development was anything but normal. Five years ago we did not know our world was about to change, and how different our futures were from the ones we imagined. If I had somehow known about the challenges that lay ahead, I doubt I would have been able to cope with the enormity of the situation.

But we did cope. And now, five years on, our lives are very different but we are okay, and my son is okay. Every day brings challenges and life is not easy, but we are living proof that a diagnosis of autism for your child does not mean that the world stops spinning and does not mean your life, and your child’s life, is ruined.

It’s been a rough ride at times and there have been many unexpected twists and turns along the way. I’ve learnt a great deal. With this in mind, I thought I’d share forty things I did not know five years ago: things that have arisen as a result of life with an autistic son.

And why forty? Because in just a few days I will be celebrating my fortieth birthday, so it seemed apt. Here goes!

Five years ago I did not know…

1. That parents have to fight for educational support for their child every step of the way. And that, from the day of diagnosis, you are so utterly alone.

3. That my son would need one to one support from the moment he entered school until the moment he left.

4. That I could exist on this amount of sleep.

5. That to get support, you have to spend hours explaining, and write over and over again, about the things he cannot do. No one ever asks about the things he’s great at.

6. That my wife was such a fantastic advocate for her son. If I come back in another life as a person with special needs, I want her to be my mummy. Wait, that sounds a bit weird…

7. That I would no longer be eating in restaurants.

8. That I would have such rhino thick skin to what other people would say.

9. That I would be able to jump the queues at all major theme parks with the kids (you have to make the most of any advantages that there are). Also, that I could park anywhere as long as my son, and his blue badge, is with me. And who knew we’d get free nappies until he was five?

10. That I would have to explain what autism is to the same relatives over and over and over again, but still they would never get it.

11. That autism was so abundant, yet so hidden. And that my eyes were so closed to the world of special needs.

12. That a fat man with greying hair (what’s left of it) would stare back at me in the mirror (I wish he’d bugger off).

13. That I would get calls from my son’s school informing me he had hit a member of staff.

14. That a child could open his car door whilst we were on the motorway without me panicking.

15. That having electrodes attached to my boy bits is more pleasurable than taking my son to a supermarket.

16. That the boys would never, ever, not even once, stay over at either nanny’s house for the night. Surely that’s not asking much? Just one night?

17. That going out together once every six months could sustain a relationship between my wife and I.

18. That so many friends would fall by the wayside.

19. That my happiest moments would come when my son did a poo on the toilet aged four, or put together a four word sentence aged three. Actually, scrap that: my happiest moments are when my son looks me in the eyes and smiles.

20. That I would learn so many new acronyms: ABA, PDA, SALT, SEYS, GAPs, IPSEA, OT, DLA to name but a few.

22. That one child could cause so much havoc. That the inside of my house would be destroyed. That a small child could destroy so much furniture by chewing it.

23. That the school run could be so exhausting, upsetting, uncomfortable, embarrassing, dangerous and time-consuming. Ditto assemblies, sports day, Christmas plays etc. And don’t get me started on parents’ evenings…

24. That it’s so nice having friends who also have SN children and who ‘get it’.

25. That school grades and levels don’t matter. That so many things that mattered before now seem so trivial.

26. That school’s know so little about autism.

28. That I would love the sound of silence so much.

29. That taking a photograph of my son not moving, or looking at the camera, would be virtually impossible.

30. That I would see the inside of a hospital so often.

31. That I would feel so guilty, so often.

32. That a whole host of labels such as ADD, ADHD, PDA and others would be talked about in connection with my son.

33. That I would have to ask for so much time off work.

34. That people from all over the world would write to me and share their thoughts via my blog (thanks everyone).

35. That I’d still be wiping my son’s bum for him.

36. That a child could surprise me every single day. That despite all sorts of difficulties, he could cope so well with he world around him and make such amazing progress.

37. That I would become more open-minded, flexible, brave, determined, knowledgable and stronger. All as a result of the arrival of this child in my life.

38. That I could be so proud of my child.

39. That a child could be so beautiful.

40. That I could love anyone so much.

Dog Days

It’s every man’s dream. Whenever he returns home, his female companion throws herself into his arms and passionately kisses his face and neck. She desperately craves his full, undivided attention and gives him hers. In her passion, she even nibbles his ear a little, such is her infatuated ardour for him. Then she fetches a ball for him to throw.

I’m talking of course not about my wife, but about our newest (temporary) addition to the house: Bella, the Jack Russell dog. Bella is our house guest while her owner, my sister-in-law is on holiday. We agreed to take care of Bella because ‘we’ were also off work over Easter. The ‘we’ is in inverted commas because, by week two, my wife had buggered off back to work, leaving me with the rampant, uncontrollable terror who likes nothing better than rolling in dirt and running off. I also had the dog to look after.

Regular readers will know my ambivalence towards dog ownership. Having lost our previous dog 18 months ago, I am in no hurry to drag my family through the upset of losing a much loved family pet again. Moreover, they are an extra responsibility and a burden that we could do without. We have enough to contend with already. My wife has been quietly lobbying for a dog for some time. In all honesty, it is not me who is stopping it happening. A couple of times I have relented but her own in-built common sense has ruled it out.

But dog-sitting is a different matter, because you can give the dog back after a short period. We had no real plans to go anywhere this Easter, so the dog would not be on its own. We knew the dog, liked it, and knowing the cost of kennels, said we could help out (again, ‘we’ rather overstates my role in the decision making process).

Also running through my mind were the potential benefits for my autistic son. Our previous dog had been near the end of his life by the time B came along, so didn’t play a huge role in his life other than just being there. But I am aware of the increasing use of support dogs for autism and the way in which they are used to improve a child’s quality of life. I think this tends to be at the other end of the spectrum from B, but perhaps he might benefit from having a dog around again.

I found some interesting information at Autism Support Dogs website, who identify the ways in which a dog can assist autistic children. These include:

1. Increasing safety for the child
2. Controlling the child by commanding the dog
3. Passively teaching the child responsibility
4. Encouraging positive changes in behaviour, lowering aggression/frustration levels with the child
5. Comforting when upset
6. Meeting the needs of parents for a degree of predictability in social settings for the child and themselves.

It goes on to say: ‘An autism support dog can improve the child’s ability to participate in education, social and leisure activities because the canine reduces the stress associated with interacting with other people and getting involved in social situations.’

I don’t think my son finds social situations stressful, just a little alien to him, and he interacts with others, so long as it’s on his single-minded terms. Nonetheless, I could see how he might learn to be calmer around the dog and benefit from having a pal who he had a role in looking after. And so Bella became a part of our lives (for ten days). With any luck, I thought, my son might respond really well. At worst, he would be indifferent. Or get bitten. Or harm the dog. Or lose the dog. Or eat dog food. Or come in from the garden covered in poo. I braced myself for what might be a long ten days…

I was not expecting miracles, and miracles did not happen. Until there is a breed of dog that can play video games or discuss levels and end of world bosses, there will be very little chance of penetrating my son’s current bubble of special interest. Much of the time, B was indifferent to Bella, and as a result, Bella knew he was not the one to go and pester to play with. After an initial flush of interest, B did not want to feed the dog or hold the lead or throw the ball. It was pretty obvious that this dog was not going to ‘unlock’ my child’s potential or become the greatest friend a boy could have.

There were, however, some much more subtle signs of the benefits of having Bella around. A particular moment that struck me was when Bella was crying (my wife had left the house). B detests crying. He has attempted to physically silence crying babies in public and will also respond explosively, or run away, if a member of his family is crying (or pretending to cry). Yet when Bella cried, my son’s reaction was to affectionately say, “Don’t cry, Bella” and even attempt to comfort her with strokes. This might not sound particularly amazing, but I was witnessing my child not only recognising an emotion (of sorts) in another being, but also determining the correct and appropriate way of handling that emotion. He did not cry “Stop it!” in the way he would with a person. He actually tried to comfort the dog, something I have never seen him do before. I think this represents an important step towards him understanding the world beyond himself.

It was also quickly apparent how well my son coped with the change to the family dynamic that Bella created. He did not, on this occasion, have any problems with change. It was as if the dog had always been part of our family. My son was very comfortable around the dog, at times using her as a foot stool (amazingly, the dog did not mind). One afternoon my wife heard B say, “I keep falling off!” She had to explain that riding the dog was a bad idea, but at least it shows how accepting he was, and even willing to engage with her. So no real miracles, but some advantages for my son nonetheless.

But the real advantage of looking after Bella, and the motivation behind writing this post, was the effect it had on the rest of the family. Bella’s arrival came during a difficult period for us as a family (see last week’s post) and was like a breath of fresh air. I can honestly say that I saw my wife laugh and smile more than I have seen for a very long time. She would probably say the same of me. We all got much more exercise than usual, and got to visit our favourite local parkland on a daily basis. I quickly came to cherish the two or three times a day when I took Bella for a twenty minute walk round the block. I’d forgotten the simple pleasures of plugging in my headphones and enjoying a few moments to myself, with the added advantage of fresh air and exercise.

B’s brother probably benefited the most. His relationship with his brother has been a little rockier recently. They are still the best of friends, but he has been getting more frustrated with the difficulty of dealing with his brother’s demands and meltdowns and rather rigid approach to playing. Much of this is the perfectly normal ‘annoying younger brother syndrome’, but we’d be lying to ourselves if we didn’t admit that his brother’s autism was putting a strain on their relationship. So the arrival of Bella was a welcome distraction to my eldest, who laughed and played and engaged with the dog all week. Bella always wanted to play, was hilarious and wouldn’t get in a strop because he was throwing the ball in the wrong way or something. He enjoyed the walks we took and warmed to his role in taking responsibility for a pet. The benefits were very obvious to see.

I’m not saying there were no disadvantages to dog-sitting this week. Walking an over-enthusiastic dog and a difficult to control child at the same time is a skill I have yet to master. The sudden needs that a dog gets at four in the morning were most unwelcome (says my wife. At those times, it was her sister’s dog, not mine). Being limited to how long we were out without the dog was also a bind and I’d forgotten how annoying dog hairs are. Our trusty Dyson is past its best and not up to constant use for cleaning up after a dog. But these drawbacks were out-weighed by the good points.

Put simply, the dog has put big smiles on all our faces this week, at a time when we most needed it. There I was looking for the benefits to my autistic son (and not seeing too many) when the actual benefits were for the rest of us. And of course, if the rest of us are happy, then B is happy too. My boy deserves to be surrounded by a family who are feeling good, so in a round about way, there were significant, indirect advantages for him after all.

Another reason for writing this post was to draw to readers’ attention the work done by the charity PAWS. PAWS (Parents Autism Workshops and Support) brings together parents of children with autism, to share experiences and explore the potential that a pet dog might have within the family. They have grown from the work of Dogs for the Disabled, an innovative charity that has developed the training of assistance dogs to work effectively with children with autism. PAWS’ focus is not on support dogs, but on the role of   dogs as pets and the benefits they can bring. Please have a look at their website and consider donating. I’ve seen for myself the potential of the good work they are doing.

The obvious happy ending to this story would be to announce we are getting a dog. Well, sorry to disappoint, but not yet. As enjoyable as it was to look after Bella, we were ultimately able to hand her back. Careful consideration would be needed before taking on a pet dog. Foremost in our minds would be the fact that we are a working family who are out of the house all day. Looking after a dog over Easter was easy, but when I’m back at work, it’s a different story. Perhaps the novelty of dog ownership would start to wear off.

But when I look at my wife, or hear her talk about Bella, I know that it will happen at some point. We’ve moved from ‘never’ to ‘not yet’ which is progress, I suppose. I’m reminded of something an autism parent told me when they got a new dog. Friends questioned their sanity, asking ‘haven’t you got enough on your plate?’ Their answer was that, with all they had on their plate, the addition of a dog would make little difference. Perhaps that’s the way to look at it. Looking after my sister-in-law’s dog was a good experience for our family and I can see the advantages for my autistic son in owning a dog of our own. They are not quite the advantages I thought they would be, but there is no denying it was good for us as a family.

I’d welcome comments on readers’ experiences of pet ownership, and please take the opportunity to look at PAWS when you have a moment. I’m off to look at Dyson vacuum cleaners with my wife now. Apparently we need a new one. I’ll pretend I don’t know it’s stage one in her strategy towards hearing the patter of (four) tiny feet in our house again!