Fairness, Anxiety and Disability update

Following my realisation that a discussion of privilege was warranted to change Jeremy’s (my 8 year old son) perspective on fairness, I decided to create a questionnaire to expose how people are treated differently based on appearance. The questionnaire and discussions that followed are below:

Questionnaire:

Illustration

A group of children with different appearances are pictured standing together smiling. A boy sits in a wheelchair toward the front of the group. A girl in a pink shirt stands next to him.

A group of children with different appearances are pictured standing together smiling. A boy sits in a wheelchair toward the front of the group. A girl in a pink shirt stands next to him.

Image obtained from http://esl-multicultural-stuff-page4.blogspot.com.au/p/diversity.html

Question 1.

How comfortable would you be saying “hello” to the girl with the soccer ball if she said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the girl wearing the head scarf if she said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the boy wearing the blue shirt (who is standing) if he said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the girl wearing the yellow shirt if she said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the boy wearing the red shirt if he said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the boy in the wheelchair if he said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the girl wearing the pink shirt if she said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

Question 2.

How much would you like to play with the girl with the soccer ball (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the girl wearing the head scarf (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the boy wearing the blue shirt (who is standing) (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the girl wearing the yellow shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the boy wearing the red shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the boy in the wheelchair (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the girl wearing the pink shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

Question 3.

If you needed help with your school work how likely would you be to ask the girl with the soccer ball (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the girl wearing the head scarf (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the boy wearing the blue shirt (who is standing) (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the girl wearing the yellow shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the boy wearing the red shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the boy in the wheelchair (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the girl wearing the pink shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

Question 4.

How likely would you be to share your food with the girl with the soccer ball (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the girl wearing the head scarf (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the boy wearing the blue shirt (who is standing) (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the girl wearing the yellow shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the boy wearing the red shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the boy in the wheelchair (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the girl wearing the pink shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

Question 5.

Which child or children do you think would most likely become a doctor when they grow up?

 

Which child or children do you think would most likely become nurse when they grow up?

 

Which child or children do you think would most likely become a teacher when they grow up?

 

Which child or children do you think would most likely become an athlete when they grow up?

 

Which child or children do you think would most likely have children when they grow up?

 

Which child or children do you think would most likely become prime minister when they grow up?

 

Which child or children do you think would most likely become a scientist when they grow up?

 

Which child or children do you think would most likely become an astronaut when they grow up?

Question 6.

Who gets treated the best? More hellos, more play, more food etc.

 

Who gets treated the worst? Less hellos, less play, less food etc.

 

The person that gets treated the best is the most privileged. What things about them made you decide to treat them better?

Boy or girl?                                                          Yes/no

Clothes they wore?                                            Yes/no

If they could do things like you?                      Yes/no

If they looked like you?                                     Yes/no

Other: 

Question 6.

Do you think they way you treat people based on how they look and what you think they can be when they grow up affects what they think they can do and therefore what they end up doing? Way too confusing, question failed.

How do you think they feel about that? Do you think that is fair?

What could you do to change that?

Discussions of questionnaire:

I explained the questions and gave no sign as to the preferred answers. I just noted their answers as they went along. Some answers were surprising in that they thought the boy at the back of the image had a disability but they couldn’t explain what it was (perhaps because his facial features seemed less symmetrical and his head was turned to the side). Once the boys started to realise that they weren’t treating people the same (based on some of the later questions) they started to get upset and wanted to change some answers.

Jeremy was more comfortable in general with saying hello to everyone, asking for help with school work and playing with everyone in general. For Jeremy, there wasn’t a significant difference in the ratings between the children (even though they varied I couldn’t detect a pattern) but the girl in the pink shirt and the girl in the head scarf appeared to rate lower in general for both Jeremy and Damian. Damian even said that he didn’t think the women with the head scarf would have any of the jobs and Jeremy said “Yeah, me too”. Damian was more likely to feel comfortable saying hello to and playing with boys. Jeremy and Damian chose boys as most likely to have the higher paying occupations of scientist, astronaut and prime minister.

I asked Damian why he chose boys for specific occupations and he said the jobs were “a better fit” for them but he couldn’t explain further. I asked if he thought boys were smarter than girls and he said “No”. I said “Do you think women could do those jobs?” and he said “Yes”. I told Damian and Jeremy that they are among the very privileged in this world. They are treated better because they are boys, have white skin and are well-off financially. They are less privileged than some white boys because they have a disability (autism) but are still treated very well. I explained that even though we don’t mean to we tend to treat some people better based on sex, skin colour (Jeremy thought it was wrong to say ‘black people’ but I mentioned that many black people are proud of being referred to as ‘black people’), how much money they earn and if they are disabled or not. The questionnaire showed that to be true for them too even though they thought it was important in general to treat everyone equally.

In response to the boys being very privileged Damian said “People in America are richer than us!”. This reminded me of a youtube video that I had watched with the boys before, which pointed out the wealth disparity in America and we watched it again. I showed Damian that a lot of people are poor in America. Jeremy began to realise and say that it was probably the people who were treated worse who were poorest and he specifically mentioned women. He then extrapolated to black people and disabled people (obviously there are many other disadvantaged groups and I will eventually add them all in, in everyday discussions recently we watched this video). I asked if we should blame people for being poor and they both adamantly agreed that we shouldn’t and it was because we treated them worse (they preferred the cup half empty approach then cup half full i.e. treat them worse and not treat us better). I didn’t really know how to discuss what we should do to change this besides being aware and trying to be nicer (pretty pathetic really, but at least a start).

The creation of the questionnaire was inspired by privilege checklists that I came across on the internet when searching for ways to explain privilege to my boys. Another day I will translate one or two of these lists for the boys to build on what they have learnt today.

 

 

 

 

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Fairness, anxiety and disability

After the annual ‘Ride to School Day’ (where I fell off my scooter) our school introduced a monthly ‘Ride to School Day’. Jeremy, Damian and I have participated in it several times since (with me on a bike not a scooter). Each time that we have done it has been somewhat stressful for me (and my boys but they still insist on doing it) not because of the risk of injury but because of the risk of meltdowns. What usually happens is that one boy insists he wants to turn around and go home and the other boy insists he must and will go on.

Although, my boys have many strengths they also have some challenges due to their unique autistic traits. Traits that make participating in events that test their endurance more challenging than for many other children. Jeremy has anxieties around order, routine and doing things the ‘right way’. Damian has many anxieties about things he perceives to be dangerous and has greater sensitivity to touch, pain and internal discomfort. Regardless, of how their challenges affect them on these events they insist on doing the ‘Ride to School Day’ anyway.

This morning, Damian initially said he didn’t want to do the ride, which was fine by me. I said reassuring “That’s fine your Dad can drive you to school with the school bags”. Of course, as soon as he realised that he had the choice he changed his mind and with a sharp intake of breath I said “Are you sure? I don’t want you to come if you are going to complain the whole way.” He was sure.

So off we went and the usual challenges ensued. Damian scratched his leg on the bike pedal (no broken skin) and stopped to whine about it, both boys kept trying to overtake one another and got upset about whose turn it was to lead and Jeremy complained about tired legs but ten seconds later was riding too close to Damian saying he was going too slow. I had offered 3 tokens (to add to their reward charts) for a ride without complaints and reminded them to good effect until…

50 metres before the bridge Damian stopped and refused to go any further. It was a very well-built wooden bridge with thick wooden pylons and planks. I’ve never seen a more sturdy looking wooden bridge before but it was high up over a body of water (an inlet) and from a distance may have looked imposing. We had all crossed this bridge many times before. In fact, before, it had been Jeremy and not Damian who was nervous about it.

Damian insisted he wanted to go home. I offered another token for crossing but to no avail. I explained how safe it was and how he had crossed it many times before but fear was resolutely setting in. I recognised that Damian had passed the limits of effective coaxing and external motivators. I could have offered him 20 tokens and scientific evidence from a construction engineer and it wouldn’t have made any difference.

I tried going on ahead without him. I thought, if he sees Jeremy and I on the bridge he might realise it is safe. I even jumped up and down to illustrate the point that it was safe. It didn’t work. I called Andrew on my mobile phone and he suggested I carry him across. However, the idea of it only intensified his feelings (I guess carrying him would make him even higher off the ground). I thought if we go back home we will be very late for school and Jeremy will refuse to go back anyway and become just as upset as Damian so I had no other option.

I told Damian that I was going to have to carry him against his will because we had to go to school and that he would never have to cross that bridge again after that. I picked him up and carried him to the bridge. Once on the bridge, I put him down knowing that finding that nothing awful was happening it would reassure him a little. He was still very anxious but I held his hand and he walked with me while I constantly reassured him until we got to the other side.

Jeremy had been so helpful just by being understanding and patient and I told him as much and how much easier it made things for me. However, when we got to the school and I confirmed that they’d both be getting their full quota of tokens, Jeremy was less understanding. Jeremy didn’t think it was fair that Damian could complain so much about the bridge but still get just as many tokens as him. Jeremy is very insistent upon what he considers as fairness.

Fortunately, I had explained to Jeremy before about Damian’s anxieties and how it made things harder for him and how we had to be understanding of his disability (not penalize him for it). Crossing that bridge was extremely difficult for him but he did it, so he gets the tokens. His complaints were expressions of great distress in this case and therefore didn’t count. Jeremy knew how distressed he was. In the future, it would just be Jeremy and I doing the ‘Ride to School Day’*.

Anyhow, now it is clear to me that I need to have a bigger discussion with Jeremy (and Damian) of what it means to be privileged (not just disability) and the social model of disability so that he can challenge his perception of fairness. Wish me luck. I’ll let you know how it goes.

*we can’t avoid a bridge on the way to school, the alternative way includes a road bridge and Damian is equally terrified of riding on the road.

Coordination

Guffaws filled the air as I ‘face-planted’ on the high-school verandah after attempting to walk up several steps on crutches. I had broken my ankle (tibia) after ‘rolling it’ while playing soccer during Physical Education class. Falling with style was never my forte and I guess my face-plant looked comical to teenagers who hadn’t yet mastered the art of empathy.

Over the years, I had laughed off my consistently poor performances in aerobics classes and team sports because people could often relate, albeit in a less affected way, and would laugh with me.

Although I may refer to myself as clumsy, I still insist (when challenged by others) that I am coordinated because sometimes I am. Although, in team sports I often performed poorly (too many variables and sensory overload), I have often fared better in sports like swimming and ‘fun runs’. As a child, I enjoyed playing catch and kicking footballs to and fro with my brother, shooting baskets with a basketball and having a hit of tennis to pass the time; practice that has paid off.

I can catch a ball. I remember watching the movie ‘The boy who could fly’ (as a child) and retrospectively thinking (as an adult) that it could be me catching that baseball before it hit my friends head. I might drop things everyday objects regularly but I often catch them before they hit the ground.

Regardless, I have not invested my self-worth heavily in my physical abilities, perhaps by necessity. Of course, now I have passed on those ‘clumsy genes’ to my sons and the pressure of physical prowess is much greater among boys in our culture. How will they fair?

Jeremy is probably the most affected by clumsiness out of my two sons. Like me, Jeremy has great reflexes (evident when it comes to iPad games that rely on them) and like me he falls often and spectacularly. He provides us with much entertainment at taekwondo. Fortunately, he hasn’t invested his self-worth heavily in physical ability either. He just picks himself up off the padded training mats after attempting a maneuver and laughs out loud, making it impossible for us not to as well.

Taekwondo however has been a challenge for all of us. When we enrolled our boys in taekwondo, Jeremy exclaimed he was so happy that he could cry (my boys had always had an interest in ‘rough and tumble’ play and fighting)*. Jeremy and Damian were always noisily enthusiastic. Nobody calls out the taekwondo cry of ‘Kihap’ as loud as my boys who often followed it up with ‘I am so strong’, ‘This is so easy’ or ‘I am so good at this’.

As much as my boys loved taekwondo it presented many physical challenges and the way my boys coped with it was to wiggle and whinge and flop down on the floor and basically just ‘do their own thing’.

The taekwondo master was extraordinarily patient; more so than me. He told me that they would ‘grow out of it’ (although I doubted it) and he often laughed at their more humorous antics and comments. As their mother though, I’m ashamed to say, I was embarrassed because they weren’t obeying the master and that reflected on me (my parenting).

So, I created a social story in BoardmakerPlus with pictures and YouTube videos of kids and experts doing taekwondo. My narration on the social story explained the levels of taekwondo and other facts that would be interesting to my boys and then covered the ‘rules’ of taekwondo like bowing and showing respect by listening to the instructors.

I then offered my boys the opportunity to earn tokens, for their token charts, as incentives for showing desirable behaviours. Up to three tokens could be earned per session and I reiterated three specific behaviours I wanted to see before each session for the tokens to be earned, which sometimes varied depending on their behaviour the week before. The tokens worked well for Jeremy but not so well for Damian straight away.

An important requirement in taekwondo is to perform a set routine of stances, strikes, kicks, punches and blocks, called a ‘form’, which varies in combinations and difficulty at each level. Even to me, as an onlooker, these forms looked incredibly confusing. How on earth does a child memorise 20 different steps, in the correct order, with such little instruction?

They were expected to memorise their form by practising it at home, but practising it at home meant you had to retain some knowledge of it from practising as a group and when practising as a group my boys tended to get very muddled (not unlike I would become in an aerobics class). It was clear to me that my boys certainly weren’t going to be able to do it on their own at that stage or age. Something had to be done because their frustration levels were high and I did not want ‘forms’ to put them off taekwondo.

So I requested permission to video record the instructors completing each form. I analysed the video at home and mapped it out with pencil on a piece of paper in a shorthand way only I could understand. It wasn’t easy for me but once I learnt to perform it myself, I could teach my boys, one-on-one. I use this method with each new form; however I can skip the mapping part now that I have a basic knowledge of the patterns involved. My boys derive much confidence from their ability to complete their forms, which reflects in their behaviour.

The other day, I received a big surprise. Damian had just gone up a level, to the level that Jeremy was previously on and I hadn’t yet taught him his new form (Jeremy’s old form). The instructor didn’t know that Damian was new to the level (they have a large group of students and it’s hard to keep track) and asked the small group (at that level) if they knew their form. Damian thought that the instructor was referring to his old form so he told her proudly that he knew all the steps. She took him on his word and started the form assuming that he knew it.

Well, didn’t Damian blow me away; he must have been watching Jeremy practise (while playing with his action figures in the same room). He was able to copy it brilliantly for a first attempt, even perfecting a move that he had never done himself before. I raced up to the instructor to tell her that it was the first time he had even attempted that form and her jaw dropped instantly. Like me she praised him for doing so well for a first attempt, knowing that it was quite a victory.

Along with this victory, Damian’s performance of individual motor skills and his form has improved with carry-on effects to his behaviour. The last month or so Damian has been consistently receiving his three tokens at taekwondo (after a year or so of only averaging one token).

In this situation, it was pretty clear that if you improve a child’s ability to participate successfully, in something that they value, then you are likely to find that their behaviour improves too. Behaviour is a logical extension of the difficulties they faced in the first place.

And now for some facts on ‘clumsiness’ in autism:

Clumsiness has a scientific name when it is expressed at a diagnostic level. It is called dyspraxia. In the case of children, developmental dyspraxia can be defined as ‘impairments in the execution of skilled, purposeful or co-ordinated motor activity that are out of proportion to any underlying motor deficits’ (Steinman 2010).

Dyspraxia is more common among children with autism (Miller 2014). The presentation of dyspraxia is varied among children with autism and presents along a spectrum in much the same way that other autistic traits do (Miller 2014).

Daniel Radcliffe (actor, who played the lead role in the Harry Potter film series) writes about his experiences with dyspraxia here, which is an interesting and brief personal account for anyone interested in dyspraxia.

For more facts on dyspraxia (including treatment) refer here.

References:

Steinman, K. Mostofsky, S. Denckla, M. Toward a narrower, more pragmatic view of developmental dyspraxia. Journal of Child Neurology 2010; 25:71-81

Miller, M. Chukoskie, L. Zinni, M. Townsend, J. Trauner, D. Dyspraxia, motor function and visual-motor integration in autism. Behavioural Brain Research 2014; 269:95-102

Notes:

* Jeremy and Damian’s ‘rough and tumble play’ developed and became quite vigorous when Jeremy had just turned 4 and Damian was 2.5yrs old. Fortunately, I was seeing a child psychologist (K) for Jeremy, at the time, so I asked her if I should be concerned about it and what I should do about it.

K asked me how I felt about it and what I had done about it already (I guess because there is no ‘right’ answer and it depends on how the behaviour fits in your own family). K told me that rough play is developmentally typical for approximately 60-70% of boys (I have not looked for a journal reference for that) and that it is a good idea for me to continue to monitor, set boundaries and always supervise it.

Our general rules were ‘no fists’ or ‘open hands’ and ‘no hitting near the head’.

 

 

“My dad is NOT a scientist!”

Proceed with caution

My boys were at first disbelieving and then quite distressed when I confirmed that their dad was a scientist*. Jeremy and Damian’s experience of scientists extended to their favourite superhero TV shows where villainous or well-meaning scientists created weapons and mutant monsters for the superheroes to defeat.

When Damian began to cry, we realised the extent of his misunderstanding and had to do some quick talking to reassure them that his dad’s life was not in danger nor was he putting the lives of anyone else in danger**. They still don’t entirely understand what being a scientist means. Every now and again, Jeremy will say goodbye to my husband in the morning and adorably add “I hope you discover something new today!”

Things don’t happen  so quickly in an average scientists lifetime. Information that one scientists gleans from his or her life’s work may only represent one tiny, although essential, piece in a larger puzzle. The puzzle itself being one tiny piece in an even larger puzzle, which somewhere along the way, with input from many other scientists and professionals may eventually lead to an everyday application that a lay person would recognise.

Perhaps that may seem like an insult but its not. Without scientists we would still be back in the Stone Age. It is just a very slow and laborious process with very little new revelation occurring as a percentage of all that is tested.

Hugh Walpole had this to say about science “In all science, error precedes the truth and it is better it should go first than last.” But it’s not really error at all, it’s investigation. Disproving things is an important step in the process. This should come as no surprise to any self-respecting scientist because it is standard practice to approach a theory from the angle of disproving a null hypothesis. Mind you, it takes more than one study to prove (or be unable to disprove) something does what it claims to do.

As Heino Falcke explains in his blog post ‘Science in the era of Facebook and Twitter- get used to it’ consumers need to be wary of the latest headline and scientists need to be wary of the fallout from being too hasty to promote their work.

The greatest bane of my existence (I may have watched a few too many superhero TV shows too judging by the sensationalism in that expression) is the host of misinformation on the internet about health and nutrition and I covered this topic in more detail in an earlier post. Of course, the same can be said for the science behind autism too when so many theories (refer here for more information) and therapies are seemingly accepted as truth (more here). I refuse to mention the ‘therapies in question’ because just mentioning them gives them more exposure that they do not deserve.

As Heino Falcke so eloquently puts it in his blog post (mentioned earlier) “Scientific truth is not the outcome of a single Eureka moment but of a long sociological process and hence it is subject to all human deficiencies”.

The moral of the story is this: Proceed with caution (don’t blindly follow) when considering a new procedure or even when adopting a point of view or making an assumption about someone with a diagnosis. Refer here for some guidance on how to evaluate online resources.

Notes:

*In an earlier blog post, I have briefly referred to my husband as being a teacher (I’m intentionally vague about my husband because his privacy is important to him). To clarify, he has both a teaching and research role.

**My husband wanted me to write: “Although, my husband gets upset he is not a ‘mad scientist'” but I didn’t think it sounded as funny coming from me.

Comprehension and learning life’s lessons

In my Uncle B’s eulogy, the story was told of a discussion that Uncle B had with a fellow cancer patient in hospital. This other patient, who was a millionaire, said that he hoped to become a billionaire before he died. Uncle B said to him that his wealth was his faith, his wife and his beautiful family.

I was gobsmacked that anyone could want more money as a last achievement; surely everyone has been exposed to enough proverbs, books and movies that highlight the emptiness of money and the value of relationships. Then, I remembered reading the book ‘Herbert & Harry’ to my sons.

Herbert and Harry were brothers who found a treasure box while fishing together one day. Herbert ran off with the treasure, developed paranoia and lived alone in a fort protecting his treasure. Harry went back to his house on the top of the hill and raised a family of his own. At the end of the book, Harry can be seen in good health reading stories to his grandchildren and Herbert can be seen neither happy nor healthy keeping guard from the top of his fort.

After reading the book, I asked my eldest son Jeremy, which brother he would prefer to be and without hesitation he said Harry. I asked Damian who he would prefer to be and without hesitation he said Herbert.

Damian has always loved treasure, for a long time ‘gold’ was his favourite colour. He would collect stones from gardens and call them diamonds or gems. Damian also loves money. He gets very excited when people give him money for his birthday and he delights in putting it straight into his money-box. Once, when I explained that a friend felt bad because he wanted to give us money for something we had done for him Damian said “That will never happen to me because when I grow up I’ll be rich and people will be asking me for money!”

Damian’s teacher (Mrs L) told me recently that she was ‘blown away’ by Damian’s reading comprehension; meaning that he not only read the words well but he also understood what he was reading. Mrs L gave me a checklist of questions to ask before, during and after reading to extend his comprehension even further.

It occurred to me that with his improved reading comprehension, developed since starting school, Damian may now have a different understanding of the book about Herbert and Harry. I decided to videotape Damian reading the story (my boys love to be videotaped) and I explained that I would be asking him questions while he read it.

Mostly, I asked Damian how each character was feeling at different stages during the book and why*. It became clear to Damian that Herbert was in fact not happy at all and with that knowledge he said, without hesitation, that he would prefer to be Harry. Phew! Message imparted. I’ll be damned if I raise a ‘Mr Scrooge’.

You can watch Jeremy read ‘Herbert and Harry’ (with comprehension questions) here**.

Notes:

* The featured image for this post includes the full checklist of comprehension questions.

** Jeremy’s recording was more entertaining than Damian’s because the battery ran out during Damian’s recording and he lost momentum. However, if you want to listen to Damian read the book then you can click here.

Herbert Harry plus checklist

Damian and ‘The Disappointment Dragon’

Several days ago, my son had a bad day. It’s not unusual to be greeted by Damian with “This is the worst day of my life.” Damian is a dramatic boy, which can be helpful because he expresses his feelings very clearly. By the end of the day, when the pressure of performance at school starts to build up (pressure to sit still, keep quiet, listen and do, organise and transition and accept the unexpected), Damian is at his most vulnerable. When Damian is at his most vulnerable it isn’t hard for seemingly little things to upset him.

That particular day, we got off to a bad start. Ironically, we were early to school (it doesn’t happen very often). In fact, we were early enough that my boys had time to play before the first school bell rang. Jeremy’s friend P was kicking a football with his dad and a few other children so Jeremy and Damian joined them.

I was relieved when Damian got a couple of touches of the ball, it’s a trigger for a meltdown when that doesn’t happen (attending Auskick presents many challenging situations) but when the bell rang Damian’s bottom lip had dropped and he looked dejected. He hadn’t kicked a goal. Everyone else had kicked a goal except him, the fact that he was 18 months younger than everyone else did not matter to him.

On finding out why Damian was upset P’s mum (N) thoughtfully insisted that the boys give the ball to Damian for him to kick a goal and Damian was momentarily happy again until one of the boys told him it didn’t count because the game had ended. N and I tried to fix it by telling him that we saw his kick and it was definitely a goal but I guess the opinions of parents start to matter less as they get older because it was no consolation for him. It’s always a worry when Damian starts the day upset.

All the children piled out of the classroom at the end of the school day, I was used to Damian being last one out due to the amount of time it takes him to organise and pack his school bag but that day I was called into the classroom for a discussion. Damian was sitting down on the floor next to some cushions, holding onto some damp tissues, bottom lip out and eyes cast down. Mrs L (his teacher) said “It’s only been the last 15 minutes, he’s OK”.

Mrs L went on to explain that they had decided to do a craft activity in the library (something they didn’t normally do) and it involved making mini-beasts (invertebrates like insects and spiders) with cardboard and other accessories. Damian loves mini-beasts and he was really pleased with his exceptionally hairy spider.

When they got back to the classroom Mrs L said they were going to display the mini-beasts in the classroom. Mrs L was so pleased with their work that she said to some children “Wow, I might even keep them up for the whole year!” Of course, Damian overheard and was instantly devastated. Damian loved his spider so much that he wanted to take his hairy scary spider home with him.

Mrs L did not want to make an exception ‘then and there’ for Damian, which was probably a good idea for the long term because if she allowed him to take it home straight away, then he might always expect that, which might cause further problems down the track. It took me back to a couple of years ago when Damian would become upset from time-to-time in kindergarten when he wanted to take his paintings home straight away but they had to be left to dry overnight. However, it always remained a challenge for him.

With all the children now gone, Mrs L openly negotiated an earlier time for Damian to take his mini-beast home. Mrs L asked Damian “What do you think would be a reasonable amount of time to have the work displayed for?” and Damian said in a resolute and unimpressed way “1 day!”

Mrs L finally accepted a negotiated time of 1 week. I told Damian to thank Mrs L for negotiating a shorter time but Damian chose to ignore me. However, I believe that he heard and hopefully he registered that Mrs L had considered his feelings and that she had compromised her position with that in mind.

The first thing that I said to Damian when informed of his disappointment was to say “How about we go home and make some bugs with our craft stuff at home?” Fortunately, we didn’t have any extracurricular activities planned for that afternoon (we often do) so I could afford the time to sit down with him and help him. The offer didn’t seem to help his mood straight away.

Mrs L began attaching Damian’s spider to a string ready to hang with everyone else’s work while I was there and she asked Damian where he wanted to put it. If Mrs L had of asked simply “Where would you like to put it?” I’m sure he would have said “In my school bag!” but fortunately Mrs L anticipated that potential response and gave him a choice of hanging it from either end of the line of mini-beasts.

Damian chose the end furtherest from Mrs L’s desk and Mrs L said “I’m glad you chose that end because it might scare me if it is too close to my desk”. I looked at Damian and his expression changed a little, I could see he was reconsidering the position. I smiled and said “You want to put it near Mrs L desk now don’t you!” He laughed and so while Mrs L hung it near her desk she pretended to be worried (in a humorous way) that she was going to bump into it whenever she passed it.

As we left the classroom, Damian started thinking about what kind of bugs he wanted to make at home but he was still upset. When we passed one of Damian’s classmates who waved goodbye to him, Damian said goodbye in a glum voice without making eye contact. I said “You should use a friendly voice because your friend might think you are upset at him” but Damian said “He knows why I’m upset!”.

He was right; all Damian’s classmates had seen him get upset. In fact, Mrs L had said to me (in front of Damian, for Damian’s benefit) that he had some good caring friends including one who had suggested that his spider hang next to his bug and the mini-beasts could play together. Although, I’m guessing Damian’s spider would have eaten his bug in reality.

At home, after spending some time making stick insects, centipedes and scorpions with pipe cleaners and googly eyes, Damian’s mood improved dramatically especially when I mentioned that he could take them for ‘show and tell’ at school the next day.

Well, the next day came and Damian helped me pack his craft bugs into boxes to take to school. Jeremy was unwell (nothing too serious) so Damian had my undivided attention and was in a happy mood. To make my day even brighter, after dropping Damian off at school, I received a book I had ordered a week earlier called ‘The Disappointment Dragon’.*

I’m hoping that like it’s sister book ‘The Panicosaurus’ that Damian loves it because the more times we read about and discuss emotional challenges and strategies for coping with them (when he is in a good mood), the greater Damian’s ability to understand and manage his feelings of disappointment so that they don’t take him to the ‘Valley of Despair’.

I have also used images from the book (not copied in this post to avoid copyright issues) and used similar terminology, to make a summary/checklist/ tool for my boys to read anytime they like. I have copied the text below**:

Go away Disappointment DragonHow can I banish the Disappointment Dragon Go away Panicosaurus What would the Smartosaurus doGo to sleep big Red Beast   How can I tame the Red Beast

Tonight, 2 days later, without prompting, Damian chose all 3 books ‘The Disappointment Dragon’, ‘The Panicosaurus’ and ‘The Red Beast’ to read before bed. Something good has got to come from that 🙂

Notes:

*I don’t agree with the phrase “The only disability in life is a bad attitude” briefly referred to in ‘The Disappointment Dragon’ for political reasons but otherwise I mostly found the book to be exceptionally useful and entertaining.

**Another book in the series that I don’t love as much but still find useful is ‘The Red Beast’. I have also used terminology from that book in the tool that I constructed for my boys (above) for consistency. The emotion level thermometers, which I refer to in the checklist/tool above, can be constructed pretty easily (search for images on the internet to give you an idea) but I use one provided in a resource that I have called The C.A.T -kit (by Tony Attwood).

 

 

Acceptance

Jeremy attended a kindergarten birthday party when he was almost 4 years old. I went over to check how he was going and another parent told me that he was impressed because Jeremy had tried to spell out his name (when asked what his name was) because he knew that the parent wouldn’t be able to understand him. Unfortunately, Jeremy couldn’t pronounce many of the individual consonant sounds either, especially the ‘J’ so he was still unable to be understood.

Jeremy had never babbled as a baby and rarely cried like other babies, instead he grunted and grizzled and later pointed. He picked up a few words early on but then stopped using them. When Jeremy was 2 years old, a ‘maternal and child health’ nurse suggested that Jeremy’s difficulty communicating could be responsible for some sleep and behavioural concerns I had about him.

The nurse put me in touch with a  publicly funded speech pathology service in the area, which was much less expensive than private services. I referred to Jeremy’s new speech pathologist (K) as the ‘talking doctor’ to Jeremy and explained that she would help to teach him to speak and Jeremy was very interested and excited about each visit. He also made dramatic improvements after each visit.

I recall generally that K mentioned that I should speak in less complicated language such as “Jeremy up?” instead of “Would you like me to pick you up Jeremy?” I think also Jeremy wanted to learn how to talk and it was almost like he was made aware that he could talk just by having a ‘talking doctor’.

Unfortunately, when Jeremy finally started to use speech he only spoke in vowels because he couldn’t pronounce consonants, which meant it was extremely difficult to understand him and added an extra element to the speech therapy. In addition to his speech diagnosis of expressive language delay with idiosyncratic error processing difficulties, Jeremy received a diagnosis of Autism Spectrum Disorder (autism) at 3 years of age. Given that Jeremy now had a diagnosis of autism he was no longer eligible to see that speech pathologist, so we switched to M.

One by one, M helped Jeremy pronounce each consonant sound. It involved manipulation of the mouth and tongue and practice saying the words alone and in sentences. The words were on worksheets with a picture matching each word. It took a month or more for Jeremy to learn how to say each consonant, until we got to the ‘Ch’ and ‘J’ sounds.

M tried so many strategies to isolate the ‘Ch’ sound but after a years worth of trying Jeremy still couldn’t pronounce it (I think the way he tries to pronounce it is called lateralization). His tongue just refuses to move in the right way to produce the sound. It’s incredibly difficult to learn how to make this sound when it doesn’t come naturally.

Jeremy always found the speech exercises difficult and disliked them as a result of his lack of success with the ‘Ch’ and ‘J’ sounds. I tried many things to try to improve his inclination to practice. I used reward systems, constructed certificates and colourful sheets with words and pictures that would interest him more than the boring ‘black and white’ sheets. I also purchased various speech pathology applications on the iPad (Articulation Station by LittleBeeSpeech was particularly good). Often there would be improvements for a while but eventually the novelty would wear off.

Jeremy would cry from time-to-time when told it was time to practice his sounds and he would complain of being tired and pretend to yawn. He would wriggle and fidget endlessly and avoid eye contact (something he usually didn’t do). He practically climbed all over his chair during the sessions.

M and I praised Jeremy regularly, acknowledged how he felt, explained what we are doing and why and how long it would take. We also gave him fiddle toys (sensory) to squeeze and stretch but Jeremy still had difficulty coping with the sessions. I would have preferred to have a longer appointment but with breaks in between but M only did 30 minute sessions. If you do the math her fee was 3 dollars per minute…tick…tick…tick.

I always sat in on the speech pathology appointments. I found myself willing Jeremy to make the right tongue and lip movements and often copied what M was doing so that I could be familiar with it too. If someone was watching us through our lounge room window, they would probably think we were in training to compete in the mouth movement Olympics, pursing and pouting our lips and curling our tongues in deep concentration.

Jeremy and I were both at our wits’ end with just the mention of the sound ‘Ch’. It had become traumatic for both of us. I got frustrated because I just wanted him to practice, I didn’t care if it wasn’t perfect but Jeremy couldn’t cope with ‘getting it wrong’ and had developed a strong aversion (probably anxiety-related) to ‘sounds practice’.

Jeremy had such success with M in the past with other consonants that I although I had considered it, I didn’t want to change speech pathologists for a long time. I kept thinking “We are nearly there, just one more sound” It was like being near the end of the finish line in a marathon in a bad dream, you can see the finish line but you seem to be running on the spot.

I asked M one day if there were languages that exist where you didn’t have to pronounce the ‘Ch’ sound and would that mean that Jeremy would no longer need speech pathology. She said yes. Damn the English language for needing a ‘Ch’ sound!

I explained our predicament to Jeremy’s paediatrician and she recommended another speech pathologist, so I have put Jeremy on a waiting list for this new therapist. However, Jeremy is 7 years old now and after 5 years of speech therapy I am worn out, Jeremy is worn out and we are glad for the break.

I previously assumed that Jeremy would be able to articulate all sounds accurately with ongoing speech therapy but now I’m not convinced. I had recently asked M if it was realistic to expect that Jeremy would eventually be able to pronounce ‘Ch’ with therapy and she seemed to think he should. M said that “only those with severe apraxia of speech” may always have difficulties pronouncing sounds even with speech therapy.

However, with a little investigation of my own it seemed that even though treatment efficacy of speech disorders has generally been shown to be effective this does not mean that you can expect all children to show improved intelligibility or communication functioning with treatment. In addition, all the articles that I have briefly skimmed through tend to stress ‘improvements’ not ‘gaining speech with no obvious phonological differences to their typically developing peers’. I feel that M raised my hopes a little too high.

I have recently been doing a lot of reading about autism from blogs by disability activists and I have learnt a lot from them. In the case of Jeremy’s speech, I am leaning toward a healthy dose of ‘acceptance’. To really understand what is meant by ‘acceptance’ with regard to autism, I encourage you to read pages 10-13 of the first issue of the ‘Parenting Autistic Children with Love and Acceptance’ magazine.

I brainstormed the pros and cons of speech therapy and wrote them on a piece of paper (roughly, within a short time, as the thoughts came to me) with the intention of discussing it with Jeremy. Jeremy is a very smart boy and I think that exposing him to these concepts is appropriate for his level of understanding (which is high).

However, I didn’t put one of my fears on the list (that I didn’t want to expose him to) and that is the potential for workplace discrimination in the future. My fear is that he may be overlooked for promotion or employment in the future. It happens.

Pros and cons of continued speech therapy for Jeremy

N.B. You’ll notice that I put ‘Discrimination and Bullying’ in the ‘Cons’ column and you may think it doesn’t belong there. I actually put that there subconsciously and later thought there is no way I could justify putting that in the ‘Pros’ column anyway.

I asked Jeremy to “come over and have a look at something important that he has a ‘say in’”. Then, when he was next to me, I pointed to the sheet of paper and said “This is about speech therapy. How do you feel about that?” His bottom lip dropped and my bottom lip dropped in reply and I said “You feel sad” and gave him a hug.

I said “I have written a list of all the reasons supporting speech therapy and all the reasons against speech therapy” and I pointed out that there were more reasons in the ’don’t do’ or ‘Cons’ speech therapy column (to let him know that I could see it was a problem for us). We read through the columns and I asked Jeremy what he thought we should do. He said “I don’t know”. I said “How about we try a new speech pathologist after a long break and if you still feel the same after a few sessions we can stop it? We can also help children who are different including those who speak differently by defending them if they get teased” (refer to earlier post on bullying). Jeremy was satisfied with my suggestion and didn’t seem to want to discuss it any further (he appeared to lose interest).

Jeremy is a privileged child and I need to remind myself of that, if he has an obvious vulnerability or vulnerabilities it can only enhance his empathy for others. One of the greatest gifts autism has given me is the ability to empathise with other people with vulnerabilities (who are likely to be discriminated against). I am less likely to underestimate someone’s competence or what they have to offer me as an equal. I am a true believer that vulnerabilities lead to strengths elsewhere by virtue of the need to cope and our ability to adapt (refer to an earlier post here) and at the very least vulnerabilities do not negate any strengths that a person already has independent of those vulnerabilities.

With the wide range of less obvious characteristics that can be discriminated against (refer here) it is unrealistic to avoid all of them. It is a much more honourable goal to promote acceptance and celebrate diversity than it is to strive for an unrealistic goal of ‘normalizing’ everything, which leads to placing the blame on the person for their differences. Jeremy’s speech is now normal for Jeremy.

I suspect that we won’t be seeing the new speech pathologist for long but it is always worth getting a second opinion. I will definitely be asking for a detailed and completely open opinion about all the likely outcomes of speech therapy for children with a similar profile and history to Jeremy. However, I believe that I already know the answer for Jeremy and I know that I have already accepted, without anxiety, that Jeremy will always have a speech impediment and he will not be alone and it is not a problem. In fact, it is a relief to put an end to what has clearly become a torturous experience for both Jeremy and I.