Misconceptions of Empathy in Autism

I am still working through my course on Autism Spectrum Disorder, and therefore am finding it hard to squeeze in time to write.  However, my amazing husband is taking the course with me, and has agreed to let me share his research paper.  I didn’t write the following, but am sharing it with his permission.  It’s so good.  All about empathy.  Which of course, I am working on developing my understanding of as well.  You can read my previous posts about empathy here, here, and here.

Misconceptions of Empathy in Autism

The term empathy was introduced to the English language in 1909 by Edward Titchener, who defined it as the ability “to project yourself into what you observe” (Baron-Cohen & Wheelwright, 2004, p. 163). The findings of psychologist Simon Baron-Cohen are often cited as evidence that autistic people have an underdeveloped sense of empathy and are therefore unable to understand and respond to the feelings of others (Russell-Smith, Bayliss, Maybery, & Tomkinson, 2013, p. 695; Smith, 2008, p. 273; Dziobek et al., 2008, pp. 464-465). This belief, however, does not give sufficient attention to first-hand accounts of autistics feeling empathy, differences in how they may express their feelings, and the lack of empathy that is sometimes shown to them. The Intense World Theory, which posits that the autistic people may sense and feel at a heightened level and may therefore be unable to respond in the manner expected by others (Markram & Markram, 2010, p. 22), may also account for part of the discrepancy between the stated experiences of autistic people and clinical observations. Inadequate attention among researchers to a broader view of empathy, coupled with this heightened sensory input, has created the misleading and harmful belief that autistics are cold, unfeeling individuals.

Baron-Cohen suggested in 1985 that autistic people lack a “theory of mind,” or ability to perceive the feelings and motivations of others (Baron-Cohen, Leslie, & Frith, 1985, p. 37). He based much of this idea on an experiment in which most children with autism were unable to determine the appropriate location for a doll to look for a marble in an observed scenario (Baron-Cohen, Leslie, & Frith, 1985, p. 42). He later collaborated with Sally Wheelwright (2004) for a study of empathy and autism. They had autistic individuals complete a questionnaire to assess their Empathy Quotient, which was then compared to a control group and found to be significantly lower (p. 168). Baron-Cohen and Wheelwright citing this as evidence of lower empathy in autistic people is problematic at a very basic level. Relying on self-reports to generate statistics, unaccompanied by any other method of observation, has proven to be unreliable (Donaldson & Grant-Vallone, 2002, p. 256). In addition, asking autistic people to respond to such a questionnaire is puzzling when considering Baron-Cohen’s earlier work on autism. In a 1985 paper, he stated that they have an impaired ability to “impute mental states to oneself and to others” (Baron-Cohen, Leslie, & Frith, 1985, p. 39). The inherent contradiction in stating that autistic people cannot understand themselves and then using their self-reports to prove their lack of empathy is enough to call the validity of the evidence into question.

Putting aside how people might rate themselves on a questionnaire, many autistic people, as well as the people close to them, state very directly that they feel very intense empathy and point to real-world examples as evidence. To find these first-hand accounts, one often has to rely on blog posts and personal websites, as autistic people are underrepresented among people who speak as experts on autism. Liane Carter (2013) discusses struggling with her son’s autism diagnosis; hearing her crying, her son recognized her sadness and gave her a hug. Many years later, he continues to recognize cues and respond in a comforting manner. Similarly, Cary Terra (2012) relates a story of an autistic client offering her reassurance after recognizing that she was feeling embarrassed. In describing his empathetic responses, Joel Smith, an autistic person, states, “it is overwhelming, threatening to wash my being away, when someone I care about is upset….I feel the pain very deeply” (Robertson, 2012, p. 187). Some autistics describe feeling empathy even toward inanimate objects. For example, Steve Slavin (2015) reports feeling sadness on behalf of possessions that are no longer noticed or used. Each of these examples shows that autistic people are able to pick up on verbal and nonverbal cues to understand an emotional state, which helps them internalize the feelings of others and often respond accordingly. These clear demonstrations of empathy are a much more valuable insight into the minds of autistic people han a problematic questionnaire or a test whose validity has been called into question for at least half a dozen potential flaws (Zurcher, 2012).

These deep feelings have been attributed by Drs. Kamila and Henry Markram (2010) to what they call the Intense World Theory. They suggested that the amygdala could function at a higher level in autistics, which may cause “emotionally relevant information” to be felt more intensely, leading to difficulty in responding to the situation and possible withdrawal (p. 3). This is in keeping with first-hand accounts of these people and those close to them, who state that empathy is often experienced at a level that is so powerful that it is debilitating. A theory that accounts for the reported experiences of autistic people, rather than dismissing anecdotal evidence, is a positive step toward giving these people more of a voice in developing an understanding of the condition. While the treatments recommended by the Markrams, such as “blocking memory formation” through pharmacological treatment and withholding stimuli from children (pp. 19-20), have the potential to be damaging to the child (Remington & Frith, 2014), the underlying ideas behind the theory may help explain the disconnect between the feelings of autistic people and how these feelings have been perceived by researchers like Baron-Cohen.

Anna Stubblefield (2012) suggests that the perceived lack of empathy in autistic people may be a learned behaviour. She states that they are frequently misunderstood by others, and that this misunderstanding leads to them being treated in a non-empathetic manner (p. 161). When autistics are told that their thoughts, feelings, and behaviour are incorrect and that they must assimilate to societal “norms” in order to be accepted, this demonstrates a lack of empathy on the part of the person criticizing the behaviour. Because the behaviour modeled for them is hurtful rather than empathetic, it should come as no surprise is some are left with a disordered sense how to respond to situations calling for empathy. In these cases, the perception of an empathetic shortfall in autistic people is partially a reflection on the people who have caused this confusion. Autistics may feel strong empathy, but the empathy deficit may be in the observers, who do not make a sufficient attempt to understand the feelings, motivations, and actions of the autistics. The perception of an inappropriate response will instead be placed upon the autistic people when reported, further perpetuating an incorrect stereotype.

Temple Grandin’s experiences with animals help support the ideas that people with autism feel empathy and that some of the perceived deficit in autistics may come as a response to the behaviour of neurotypical people. She discusses understanding the feelings and behavioural motivation of a squirrel by observing its actions (Grandin & Johnson, 2005, p. 205). She is well-known for her work with slaughterhouses, which is based on her observations of emotions in cattle. She saw that cows would hesitate when afraid, and she asked herself how she would feel in the cow’s place. (Kalbfleisch, 2013, p. 214). She has also written about her ability to understand the emotion of a horse by paying attention to subtle signs like the sound of its breathing and the movement of its tail (Grandin & Johnson, 2010, p. 123). The abilities to understand animal responses and put oneself in their place fits the definitions of both affective and cognitive empathy stated by Baron-Cohen and Wheelwright (2004, p. 169), further undermining the “theory of mind” belief that autistic people are unable to feel empathy.

Grandin and Catherine Johnson (2005) state that humans and animals share basic emotions, but that it is easier to understand the feelings of animals because they are more consistent and predictable (p. 88). This provides support for the idea that autistics are capable of feeling empathy, as Grandin is able to comprehend visual and auditory cues to understand the feelings of these animals. Recognizing these intricacies of animal behaviour, using this information to attribute emotions to the animals, and putting oneself in their place matches Titchener’s definition precisely, further establishing the fact that autism and empathy are quite compatible. If the barrier to empathetic understanding does not exist between autistics and animals, this also supports the idea that part of difficulty with empathetic understanding may be caused by other people, rather than, or in addition to, autistic people.

Baron-Cohen’s “theory of mind” hypothesis continues to be cited, despite significant changes in the understanding of autism in the 31 years since he put forward the theory. Taking his statements from 1985 at face value is no more logical than continuing to accept other statements from the same paper, including the dated statement of a 1 in 2,500 rate for the prevalence of autism (Baron-Cohen, Leslie, & Frith, 1985, p. 37), and the thoroughly discredited claim that “the majority of autistic children are mentally retarded” (p. 38). The ideas of Baron-Cohen and other autism researchers have created a false belief of unfeeling individuals, which In an article published by Autism Speaks, Dr. Roy Q. Sanders (2011), former Director of Psychiatric Services at Atlanta’s Marcus Autism Center states, “Teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing – it is a waste of time and annoys the pig (at least most of the time).” This attitude serves only to segregate autistic people further by creating and perpetuating an untrue and damaging stereotype. While some observations have supported the theories of Simon Baron-Cohen, these tests, which have been called into question, should not be taken at face value when accounts from the people in question show the exact opposite. First-hand accounts of autistics and those closest to them show a strong, and even heightened, sense of empathy. Rather than making assumptions and judgments based on an untrue stereotype, people working with autistic individuals need to be aware of these feelings in order to support them and work with them to develop strategies to communicate their empathy effectively.

 

References

Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a “theory of mind”? Cognition, 21. 37-46.

Baron-Cohen, S., & Wheelwright, S. (2004). The Empathy Quotient: An investigation of adults with Asperger Syndrome or High Functioning Autism, and normal sex differences.  Journal of Autism and Developmental Disorders, 34(2). 163-175.

Carter, L. K. (2013, May 17). Autism and empathy. Retrieved from http://www.huffingtonpost.com/liane-kupferberg-carter/autism-and-empathy_b_3281691.html

Donaldson, S. I., & Grant-Vallone, E. J. (2002). Understanding self-report bias in organizational behaviour research. Journal of Business and Psychology, 17(2). 245-260.

Dziobek, I., Rogers, K., Fleck, S., Bahnemann, M., Heekeren, H. R., Wolf, O. T., & Convit, A. (2008). Dissociation of cognitive and emotional empathy in adults with Asperger Syndrome using the Multifaceted Empathy Test (MET). Journal of Autism and Developmental Disorders, 38, 464-473.

Grandin, T., & Johnson, C. (2005). Animals in translation: Using the mysteries of autism to decode animal behaviour. New York: Scribner.

Grandin, T. & Johnson, C. (2010). Animals make us human: Creating the best life for animals. Boston, MA: Houghton Mifflin Harcourt.

Kalbfleisch, M. L. (2013). Rare and powerful visual–spatial talent: An interview with Temple Grandin. Roeper Review, 35, 212-216.

Markram, K., & Markram, H. (2010). The Intense World Theory – a unifying theory of the neurobiology of autism.  Frontiers in Human Neuroscience, 4:224, 1-29.

Remington, A., & Frith, U. (2014). Intense world theory causes intense worries. Retrieved from https://spectrumnews.org/opinion/viewpoint/intense-world-theory-raises-intense-worries/

Robertson, R. (2012). Reaching one thousand: A story of love, motherhood and autism. Collingwood, Australia: Black Inc.

Russell-Smith, S. N., Bayliss, D. M., Maybery, M. T., & Tomkinson, R. L. (2013). Are the autism and positive schizotypy spectra diametrically opposed in empathizing and systemizing? Journal of Autism and Developmental Disorders, 43, 695-706.

Sanders, R. Q. (2011, April 20). The experts speak: Hard times come again no more. Retrieved from http://blog.autismspeaks.org/2011/04/20/experts-reflect-on-parenthood-finale/

Slavin, S. (2015, June 29). Autism: Feeling sympathy for inanimate objects. Retrieved from http://adultswithautism.org.uk/autism-feeling-sympathy-for-objects/

Smith, A. (2008). The empathy imbalance hypothesis of autism: A theoretical approach to cognitive and emotional empathy in autistic development. The Psychological Record, 59, 273-294.

Stubblefield, A. (2012). Knowing other minds: Ethics and autism. In J. L. Anderson & S. Cushing (Eds.), The Philosophy of Autism (143-166). Lanham, MD: Rowman & Littlefield.

Terra, C. (2012, June 7). The hidden autistics II: Asperger’s in adults and empathy. Retrieved from http://www.aspiestrategy.com/2012/06/hidden-autistics-ii-aspergers-in-adults.html

Zurcher, A. (2012, June 18). Debunking the theory of mind. Retrieved from http://www.huffingtonpost.com/ariane-zurcher/autism-theory_b_1594706.html

High Functioning my Ass

I read this and it really resonates with me. I see so much of my loved ones in it. I just wanted to share it with you as it really shows how hard the struggles can be and how they add up.

Antleader's Journey

CN: autistic burnout or shutdown

TW: ableism

I think I should be fired from adulting effective immediately. So many people tell me I’m high functioning, but the reality is that’s a load of bunk on two counts: 1) I am not high functioning because I can barely do the tasks they think makes me high functioning and 2) functioning labels are all kinds of animal feces.  What follows is a list of the things that have happened in the last week.

Thursday

Last Thursday, the writing center theory class that I coteach had a discussion on disability and the parent of an autistic kid said we need to make our clients, students, and kids “normal” (It makes me uncomfortable just writing that).

Friday

The next day, I went to a disability event at my university where they had disabled people lead simulation experiences of their own disabilities…except autism, which…

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Stimming and the Benefits for People with ASD

I have not had a lot of time to write for my blog.  My husband and I have been taking an online course on Autism which has required most of my writing time.  I did have to write a research paper for the course, and I thought I would share it on here since I put work into it.

As a requirement of the course, I had to use person-first language, which is not my preference.  Please do not read this and think that my opinions on that issue have changed.

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Reading through a number of written works by individuals with autism creates an awareness of how important it is for them to be able to self-stimulate, or stim.  The stimming is an important part of being for people with autism, and the efforts of the population with typical neurotype to restrict, restrain, or limit stimming is harmful to people with autism.  The stims are incredibly variable and serve many functions, making life happier, easier, and less stressful for people who find the world often overwhelming and difficult to understand.

The world can be hard to process for people with autism, and stims can help by providing a way to self-regulate, to gain control of one’s own sensory input.  There are many ways that this happens.  One is through regulating emotions. According to The Stimming Checklist (n.d.), “Often emotions like sadness, anger, or anxiety will prompt stimming as a way to both experience these less pleasant emotions while also keeping our cool.” Positive emotions also elicit stimming in most people with autism.  Many adults with autism report relying on stims to help them regulate during social situations.  Social interactions, even after years of supportive therapy, can be very difficult for people with autism, and stimming is reported to allow them to participate in more varied situations, with more people and stimuli, for longer periods of time.  The sensory processing difficulties that accompany autism can be regulated by stimming, creating a way for people with autism to create their own sensory input.  This can result in greater sensory input when needed, or a sensory distraction when there is already too much sensation around that is out of the individual’s control.  Finally, a pragmatic regulation in an attempt to be considerate around other people can be a reason for stimming.  For example, “In a crowded lecture hall with a fascinating speaker, we might want to jump up and down with excitement and ask a million questions because we are so engaged, but if we believe this will not be helpful to ourselves or our classmates in the long run, we might choose a stim like twirling our pens or rocking in our chairs to remain focused and engaged without disrupting others” (The Stimming Checklist, n.d.).

People with autism report that efforts to curb their stimming are painful and result in more trouble than the stimming itself caused.  Emma, a poet who relies on alternative communication describes stimming as self-care, she says when asked to stop stimming, “it makes thick feelings worse.” (Zurcher, 2012).  Adults with autism report feeling that the “therapy” they were subjected to as children in order to learn how to pass as less autistic left deep emotional scars.  Feelings of shame are connected to the belief that stimming is wrong.  People report that stilling their stims leaves them open and vulnerable to the assault of daily living in a world that is too much to handle.  They also report that the negative emotional associations and judgment that society places upon those who stim break down the self-esteem and self-worth of individuals.  Julia Bascom (2011, April 5a) describes it as:

The hands are everywhere.

They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet. They grab our hands, “don’t do that, people will think you’re retarded.” They smack away picking fingers, because our foreheads must be pristine and easy-to-look-at for them. You turn away, pull away, try to put some distance in so you can breath, and they grab your hands, your hips, your shoulders and twist you back. You bounce your leg—surely you are allowed this?—and they press a hand to your knee, stilling you. Everyone taps their pencil, but when you start their hand closes over yours and won’t let go.

 

This is the opposite of how students in class should be made to feel, regardless of whether they are dealing with a disability or not.

Self-Injurious stims are often cited as the reason to stop stimming altogether.  Many people with autism do hurt themselves or injure themselves when stimming.  However, the idea that people with autism need to suppress their autistic nature and pass as people with typical neurotypes creates additional stress on already stressed nervous systems.  People with autism are dealing with a minefield of sensory assaults and attempting to appear different from their inner nature can be more than they bear.  Bridget, a person with autism, states that these behaviours are often a result of students “passing,” or forcing themselves to appear as if they do not have autism. She tries to follow instructions to stop stimming but finds that the need does not disappear. She writes, “Those occasions damage me, chipping away at what is already paper thin defenses until there is nothing left” (It’sBridget’sWord, 2012). A better solution to help students who feel the need to injure themselves is to be proactive and give them space and acceptance to stim safely in public, openly, as they feel they need to.  That way, perhaps more of their defenses can be strengthened and they would not feel so vulnerable.

Some research supporting the idea that stimming should be stopped suggests that it is harmful to learning and focusing.  It certainly can be distracting to others in a classroom, and the inclusive model of education creates opportunities for students with autism to annoy and disrupt their classmates.  An online search of how to stop stimming comes up with many results and reasons to “help” children with autism conquer their need to stim.  The May Institute (n.d.) pontificates,

Self-stimulatory behaviors may seem harmless. But for children and adults with autism who lack social and self-regulatory skills, these behaviors can interfere with learning at school or completing daily living activities at home. They can also be disruptive and upsetting to others, causing them to avoid or ostracize the individual in social settings.

However, in reality, there are many stimming behaviours that are not disruptive and actually help students with autism learn.  One adult with autism writes about stimming and focus, describing it like an itch that unless scratched continually distracts and derails focus.  “If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch” (MusingsOfAnAspie, 2013, January 3).  There is also research supporting this idea.  Studies have been done that show that when a person is abstaining from something that they want (need), they have a more difficult time concentrating on a task (MusingsOfAnAspie, 2013, June 18). Students with autism struggle with executive function, and when they are using their brain to stop stimming, they are unable to use it for learning and focusing on the tasks that are being asked of them.  In a classroom, students with autism should be taught socially acceptable behaviour and stim options, and the rest of the class should be taught how to accept and understand the learning needs when in a diverse class.

  
A school environment is precisely the place where social acceptance needs to be taught and modeled.  People who are concerned that the stimming child would be isolated, bullied, or alienated need to work on changing societal attitudes.  Kirsten Lindsmith (2014) describes having a hard time making friends with “same age neurotypical counterparts,” but says that, when she allowed herself to express her personality, she made close friends with a student with ADHD. She recollects fondly, “We got along swimmingly and stimmed together, repeating phrases and sounds and generally torturing our poor math teacher.” Children are adaptable and learn acceptance just as easily as prejudice, so teachers and Education Assistants have a responsibility to demonstrate and encourage friendships with students with autism.

Perhaps the best and most natural reason for stimming is the pleasure it expresses and creates.  Many people with autism have written about dealing with intense sensory input, and the intense joy they feel when they are stimming.  Joy and stimming seem to be inextricably linked; there is joy when stimming, and stimming when there is joy.  The words of adults on the spectrum need to be the authority on this topic, as they share what those of us who are not on the spectrum cannot truly understand. Julia Bascom (2011, April 5b) says that she feels that stimming is a benefit of autism, as it allows her to experience the world in a more enjoyable way. She sees others around her feeling “miserable” because they feel constrained by the need to follow social norms, while she is able to “amplif[y]” her enjoyment of the world through stimming. Reflecting on stimming, she writes,

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

Creating a positive, inclusive, and understanding setting by accommodating this need to stim benefits the student. This, in turn, can help create a happier classroom environment for other students, teachers, and Education Assistants.

Stimming is a powerful drive among people with autism, and it is a productive way to deal with the onslaught of sensory inputs they experience every day. Adults on the spectrum need to be the authority, as they are best positioned to describe the desire to stim as well as the positive benefits. They explain how it helps them calm down, focus their minds, and put themselves in a better mindset for learning. Attempts to stop this behaviour can cause emotional damage and a buildup of overwhelming emotions for students who are expected to “pass” as if they do not have autism. Stimming can also be a source of overpowering joy for students, and we should not deprive them of this beneficial aspect of autism to conform to social conventions that are built on an illogical “one size fits all” model.

 

 

References

 

Bascom, Julia. (2011, April 5a). Grabbers [Web log post]. Retrieved from https://juststimming.wordpress.com/2011/04/05/grabbers/

 

Bascom, Julia. (2011, April 5b). The obsessive joy of autism [Web log post]. Retrieved from https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/

 

Harris, T. J. (n.d.). Reducing self-stimulatory behaviors in individuals with autism. Retrieved from http://www.mayinstitute.org/news/topic_center.html?id=355

 

It’sBridgetWord. (2012, October 7). Self injurious behaviors [Web log post]. Retrieved from http://itsbridgetsword.com/2012/10/07/self-injurious-behaviors/

 

Lindsmith, Kirsten. (2014, May 16). Stimming 101, or: How I learned to stop worrying and love the stim [Web log post]. Retrieved from https://kirstenlindsmith.wordpress.com/2014/05/16/stimming-101-or-how-i-learned-to-stop-worrying-and-love-the-stim/

 

MusingsOfAnAspie. (2013, January 3). The high cost of self-censoring (or why stimming is a good thing). Retrieved from http://musingsofanaspie.com/2013/01/03/the-high-cost-of-self-censoring-or-why-stimming-is-a-good-thing/

 

MusingsOfAnAspie. (2013, June 18). A cognitive defense of stimming (or why “quiet hands” makes math harder) [Web log post]. Retrieved from http://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

 

The Stimming Checklist. (n.d.). So what is stimming? Retrieved from http://what-is-stimming.org/so-what-is-stimming/

 

Zurcher, A. (2012, January 2). An Interview with Emma about stimming [Web log post]. Retrieved from https://emmashopebook.com/2014/01/02/an-interview-with-emma-about-stimming/

 

Thoughts on Celebrating Autism

Amythest Schaber is quickly becoming one of my heros.  She is incredible, Autistic, and well spoken.  Even cooler, she is from my province and there is a remote chance that one day I might actually get to meet her and thank her.  Yesterday I had the chance finally to watch her keynote address, The Celebration of Autism, at the Richmond Autism Resource Fair 2015.  I knew it would be good.  It’s long, 21 minutes, so I had to wait until I had time to watch and listen undisturbed, but it is incredible.  If you would, if you could, please watch it.

I want especially to share some of what she said with you, as it resonated so strongly with me.

You have to watch out for tolerance.  It’s not love or understanding that most of us learn for people who are different, it’s tolerance. Not how to accept, but how to put-up-with. There is no love in tolerance. Tolerance is inequality. Tolerance says, “Who you are is different and wrong, but I, as the right majority, will conditionally allow your unpleasant existence to go on”.

It’s important because I have been raised on tolerance.  I have been educated with tolerance.  Tolerance is so tricky and it is wrong.  I have taught in classrooms where I worked with tolerance as part of my foundation.  It was out of ignorance and misunderstanding, not because that is what I wanted to do.  Tolerance looks at what is wrong with a person, their situation, their behaviours, their choices, and looks away.  It doesn’t understand, care for, or love anyone.

For many, the concept of Autism acceptance is a stretch out of their bubble of privilege that they are not willing to make. The thought of accepting Autistic people exactly where we are, as we are, disabled and human, challenges and joys alike, is too much. They are too deeply entrenched in the culture of cure and its panic-perpetuating tragedy rhetoric. To these people, to these people who try in vain to separate the person from the neurotype, to cut out the Autism, to mould a non-autistic child from an autistic one- the idea of accepting Autistic people as we are is outlandish to them. To these people then, to celebrate Autistic people, and even Autism as a neurotype, is disturbing…

The celebration of Autism transcends the shadows of ableism and the silence of tolerance. Celebration pulls first-person autistic experience and joy into the limelight. The celebration of Autism is the most powerful tool we have to hold back the dark of indignity, and to spread our message. In a world dark with pity, fear, and hatred for people with disabilities, celebration gets people’s attention. Celebration is radical.

This is radical.  And I can see it.  Celebrating with Jake when he is celebrating is enough to convince me.  There are a few things here that I haven’t written about on this blog before that I want to address quickly.  First is ableism.  This is the idea that being disabled or able-bodied is somehow a difference that should be exploited, the same way that sexism, racism, or ageism separate humans into classes that have different worth.  It is a term that I had never encountered before I dove into Autistic culture and started reading.  Certainly, I have been guilty of ableism.  Learning about it is opening my eyes to the prejudice that exists, even within myself.

The other thing is this idea of changing an Autistic child into on that blends in, that is non-Autistic in any noticeable way.  It is an idea that is entrenched, promoted, and wrestled with in Autistic writing.  I am now firmly in the camp of ‘that’s a terrible idea,’ with the caveat that any strategies that help Jake cope and succeed are worth learning and fighting for.  The motivation always needs to be his happiness, esteem, and personhood, not my comfort or embarrassment.

To many of us, our disabilities are vital and intrinsic parts of ourselves, of our identities, the importance and meaningfulness of which cannot be denied. For many of us, disability is as an important aspect of our self as our race, religion, nationality, gender, or sexual orientation. But for too many people, disability is the last holdout of shame, of intolerance, of outright hate. Some of those people are disabled themselves and have internalized a lifetime of ableism.

I do not, nor will I ever, expose Jake to the public as a disabled person.  I do not want to hold him up as inspirational, nor do I want to embarrass him.  However, his struggles are real and if or when he wants to share them, I will support and stand beside him.  Right now, my motivation is to help change culture and tolerance into something more meaningful; acceptance and a truly inclusive culture.  Difference and disabilities are real, and they continue to be a source of bullying and negative self esteem, as well as the scary list Schaber has put together.  Dissolving these ideas in the public will make Jake’s future brighter and safer.

I am amazed, when I find people who should be like me, who are also parenting incredible Autistic children, they are quiet.  We talk quietly, about things that are a struggle and things that we have in common.  We don’t talk about ableism, about neurodivergence, or about acceptance.  It is so strange to me and quite frustrating.  There is a hesitance to say it out loud.

It is this hesitance that continues to hold up that last holdout Schaber mentions.  We have to push through our fear, our cautious quiet, and actually use positive words to expose the shame, intolerance, and hate.  I have a few friends who get it, who see what I’m seeing and hear what I’m saying.  They are a good, safe sounding board for me.  It’s a start.

Amythest Schaber’s blog is here.

Love and Empathy round 3

I cannot get enough of my son.  My Jake.  My autistic son.  The one who drives me to insanity and who never stops talking and who asks me to do the most ridiculous things.

He is so beautiful.

He loves so much.

He is bursting with love.  He is overflowing with it.  He can hardly sleep because he just wants to be near me.  He just wants to kiss me one more time.  He just has one more “I love you” and one more question about Star Wars to ask me.

He follows me around the house.  Sometimes holding onto me.  Sometimes he brings his whole world where I am.  This afternoon I had to fold laundry so he brought everything into my bedroom.  Everything being a dinosaur, a long piece of brown craft paper crumpled, two large cardboard boxes, my woven baby wearing wrap, some Lego figures, and a lightsaber.  This was all needed to show me how he would film a trailer for his movie.  He’s a director these days.

DSC06013
A Lego Star Wars battle.

It makes me love him even more.

I want to actually follow through on my promise to have a sleepover in his room over Christmas holidays.  I have been putting it off for so long, and I know it would mean so much to him.  I will not get much sleep, but I hardly get much sleep anyways, what difference will it make to me?  It will make all the difference in the world to him.

I am completely over the empathy question (see Empathy round 1 and Empathy round 2).  This boy, he loves and feels so deeply.  It challenges me to love deeper and more.  I am learning how to show love and say “I love you,” and I truly thought I was an expert at that.  I don’t know how long it will last; surely little boys grow up and stop wanting their moms to snuggle with them, but it is so, so special.

I have read many blogs by moms who write about how their autistic children have shown love, true, deep love, and it comes out hard to understand.  I don’t know if or how I can avoid that.  How can I explain that when Jake loves, it is consuming?

I am learning so much about how to love my God, how to love my husband and my other children, from this one boy.

So about empathy.  We have adopted a kitten.  She is adapting extremely well to our noisy, busy household.  And the kids love her.  Just love her.  Penny squeals at her, pulls on her fur and her ears, and is trying to learn how to be gentle.  Aiden lifts her up, lugs her around, swings her, bounces her, hounds her and tortures her, all in the name of love.

But Jake.  Jake whispers to her.  He searches for her and gets right down to pet her.  He giggles gleefully and uncontrollably when she touches him.  He will not pick her up.  He will not push her, pull her, poke her, or bother her.  He leaves doors open for her and never forgets to feed her and give her fresh water.  He lies perfectly still when she jumps on his bed so that she won’t startle and leave.

That is empathy.

That is Jake, understanding how a kitten might feel.

That is Jake, realizing how painful and scary it can be to feel trapped, restrained, and touched.  I have not one time had to tell him to be gentle with the cat.  He is cautious and caring.  He shows his love in ways that amaze me and seem beyond his years.

I try to tell him how much he means to me.  And then I worry that I am telling Jake this more than I am telling Aiden or Penny.  I try to show him how much I love him, and it never seems like enough.  It really isn’t, as he follows me, telling me that he just needs more love.  But I worry that I have not shown enough to Aiden or Penny or my husband either.

I want to give more, and I am swinging on a pendulum of feeling like I just adore him, and life, and all these incredible children and moments so much!  And then I switch to feeling like they need more than I have to give and I am wholly inadequate and can never give them enough.  Thankfully this is love we are talking about, and there are always ways to give and share love.

I am trying to love Jake like he loves our kitten.  To see what he feels and love it.  To be there for him, to be there for all my kids, and not be frustrated at them.  Right now the pendulum is all the way over in the incredible love zone, and I can’t wait until the holidays when they are all home all the time.  I just can’t get enough of him.

 

No Small Thing

This is not a place where I want to vent.  This is not a place to write about the hard moments, the power struggles, the meltdowns, and the frustrations that come as a result of parenting an autistic child.  It’s not about that.  I don’t ever want to feel like anything I’ve written is something that would embarrass Jake or use his autism as fodder to make me sound like a better parent.  I don’t want it to be a place where I exploit his innocence, struggles, or autism to gain some sort of kick or self-righteous feeling.

I try to censor myself and I have my husband proofread all of my blog entries before I post them.  The internet is everlasting, after all.

That being said, there are some things that I feel like I can share.

Jake does better in school when I am involved.  I have been going to his class to read with a small group (always including Jake) twice a week since late September.  His teacher and I have both noticed that he is more relaxed, less anxious, and has better days overall when I stop in.  I love coming to his class.  I love seeing him in his desk, getting a hug and a kiss in the middle of my day, and knowing that I am helping him feel better and have a more successful day.

Jake does better with field trips when I participate.  Our school does not have access to a school bus, so parents help drive students for field trips, and I have gone on several this year.  While field trips are fun, exciting, and awesome, Jake also finds them overwhelming, unfamiliar and unpredictable.  If I am there with him, I can literally hold his hand.  I am reassuring, comfortable, and familiar.  I can talk him through what to expect and provide security and safety when things are unexpected.  I don’t feel like I am coddling him, overprotecting him, or hovering, even though it could be seen that way.  I am praying that my investment into his security and confidence now will pay off later in life.

Jake has not had many fevers at all since school started in September.  I believe, strongly, that a large part of the reason is that I am so focused on his needs this year.  I am keeping him home for afternoons when I see he is getting worn out.  I am putting more time into preventing meltdowns and really stressful situations for him.  I feel like I am working on the preventative rather than reactive side of things this year.

This year Jake has expressed that he wants to go to the mall and see Santa, that he wants to tell him what he wants for Christmas and he wants a picture taken.  I am so amazed.  He is six years old.  For six Christmases, I have tried to get him to go and to get a picture.  There was a commercial last year for Canadian Tire where a child used his iPad to FaceTime Santa because getting to the mall was so hard and created so much stress.  I cried several times when I saw the commercial.  It was so beautiful, so lovely, and I could so relate.  I gave up and didn’t even attempt it last year.

So this year, I am going to pull him out of school early one afternoon, to attempt to go at a quiet time in the mall.  I am going to practice with him, show him videos of other kids going to see Santa.  I am going to be patient with him, watch at the mall to see some other kids go first.  Then, if he is okay, we will get in line.  We will do it, if he wants to. And if he doesn’t end up getting the picture and telling him what he wants, we are going to bring along the list and an envelope and mail it.  No stress.  No pressure.

Except that maintaining this level of anticipation of possible disaster is hard.  Always looking for possible meltdowns, always checking to make sure he is healthy, not too tired, always comparing what I would like to do today with what Jake needs me to do is a sacrifice.  It’s not too hard.  I’m not wishing for anything different.  But it is a sacrifice.

I cannot plan an entire week in advance because if Jake is overloaded, plans get canceled.  In our family, someone is sick or burned out or there is a crisis every two weeks.  I cannot plan to do things after school if, in two days, we will have other plans.  That is too much for us.  I cannot take Aiden to a play date on a day that I have promised Jake I will be in his class to read.  That would throw off his expectations and the pattern we have built, creating stress and anxiety for him, leading to meltdowns at school and after school, and more stress on me.

I am tired.  I am not ironing shirts for my husband to wear.  I am not finding a fun place for our Elf on the Shelf.  I am procrastinating, and I will give up sleep in order to get those things done as well.  I give up sleep, I give up time with Aiden and Penny.  I give up time with my husband, and I give up time for myself, and then I try to get caught up and give each of us as much meaningful love as I have left.  We all sacrifice.  It’s hard to read that and hear the way it sounds.  I don’t mean that we are suffering or that it is terrible.  It is a choice that I am making, consciously, and I believe it is a good choice.  I am giving what I believe I need to, and I can see that, as a result, we are all calmer and happier, and things are going well.

This is just a small list of some of the trade offs that we are making daily.  There are so many things.  I cook food that Jake will eat, I make up songs at night describing the events of the Star Wars original trilogy so that he will not be surprised when he watches them.  I am tired, but he is happy, and that makes me happy.  Right now we are all feeling exhausted and are looking forward to the Christmas break.  I am looking forward to it with joyful anticipation, and also the knowledge that spending more time with all five of us in our small house will be extra noisy, I will not get anything accomplished, and I will have few breaks to rest alone.

I guess it’s just never what I would have thought, and I don’t know if or when that will change.  I am getting into a good groove, and I am realizing how much love, effort, and work I need to put into Jake.  It is no small thing but it is making a huge difference.

A Tiny Hole Pricked in the Dam

Well.  I did it.  I told Jake he is not alone.  He is part of a group of individuals who share similar struggles and gifts, and that being a part of this group means that he is autistic.

He didn’t ask me loads of questions.

He didn’t wonder if this made him special or if it was in his brain.  He didn’t ask if I was autistic too or if Aiden was or what it meant.

He didn’t say anything.

He nodded.  And kept playing Lego.

I waited.  He didn’t mention it at all that night.

He didn’t mention it the next day.

I have to say.  It was anti-climatic.  I was hoping that he would have questions.  My determination to not make a big deal of it stopped me from elaborating on the things that I have wondered.  He will wonder things one day, I’m sure.

He didn’t go to school and tell all his classmates.  I had kind of worried about that.

It was almost as though it never happened.

Except it did.  And the quiet, not a big deal nature of it was good.

The other day at his Tae Kwon Do class Jake had an accident and hurt himself.  Before warm-ups.  Before class even started.  His dad was surprised at the severity of the meltdown that ensued, and class was almost half over before he managed to convince Jake to try again.

This label is important.  The teacher didn’t make a big deal out of the screaming 6 year old with his arms wrapped around his fathers’ ankles.  Dear dad was totally embarrassed, but he responded calmly, knowing that his kid can be a struggle.  That once he is thrown off, it is hard to reset.

They came home, with Jake happy and victorious, and dad burned out and frustrated.  Dad and I discussed strategies, positive reinforcements for calming down quickly, and new visuals that could help.  We strategized.  Jake will learn to strategize.

Then we talked about what the other parents might have thought and how hard it is to know what to say or do when we are out in public and this kind of thing happens.  Truthfully, it is happening less all the time.  But what is there to say?  Do we make excuses, announce his labels for the public, run from the situation and continue the meltdown in private, give up on Tae Kwon Do?  I just don’t know.  Those moments are hard.

I talked with Jake about it after they came home and tried to explain how dad was feeling.  I think Jake understood.  He said that if he was the dad and his kid did that he would be very upset.  He has an unusual way of speaking when he is being empathetic, and I think he was close to getting what was going on.  He is so good, so intrinsically good, I believe that he will get it.

And so, I am proud of myself and my family.  We love our autistic Jake.  We would do anything for him and his happiness, and we work hard with him so that we can all get through each day.  One day at a time.  And one of these days we will talk again about being autistic and what it means.

New Convictions

I guess I am becoming a neurodiversity advocate.  I am not reluctant, merely surprised.  This wasn’t in my plans.  I didn’t know I had it in me.  I didn’t know I needed to.
I have come a long way this past year.

I have decided that I am ready to write about what I think I believe, now.  That sentence is not meant to be wishy washy, but things are changing so fast that it is hard to keep up.  A year ago I wrote about what I thought I believed then.  A year from now I suspect that I will have continued to try to keep up and may have grown my beliefs some again.

Here it is for now, then.

I don’t want to change Jake.  I don’t want to cure Jake.  I don’t want to teach Jake to blend in or suffer through therapy where he works at becoming less obviously autistic.  I want to help Jake learn how to thrive in situations that are not easy for him.  I want to help Jake learn to navigate conversations so that he can maintain true friendships with people who value him for who he is.  I want Jake to learn how to conquer his anxieties and fears so that he is not limited by them.

This may not seem revolutionary, if you have been following my progression on this blog.  It is something that has been rolling around in my mind though, as I am reading Neurotribes and looking at the reactions from the autistic community.  It is also something that has become more important to me as I am struggling to find the courage to explain autism to Jake.  I also have been invited to speak to another class at my school about autism and how to relate to a friend with autism.  I feel like it is so important to ground myself in my beliefs and to know where I am coming from.  It impacts where I go, what I say, and how I act.

I believe that in our community, the ABA therapists who are working with our family are united with us in our goals and are compassionate, kind individuals who see Jake as a person and who have the time and resources to help him.  Therefore, and because the government supports us with funding for the therapy, we are happy to have them be a part of his learning team.

Over the course of his maturation and growth, I am hopeful that he will learn tricks and tools to help him in situations where autism is a disability.  Situations like job interviews, where shifting eyes suggest that he is untrustworthy, would be more successful for him if he could sustain eye contact or find another way to demonstrate his competence.

There is something about people who struggle.  They are made stronger.  The Bible says that it is easier for a wealthy man to fit through the eye of a needle than to enter the kingdom of heaven.  When life is simple and easy, we don’t understand how much we need God, how much we need community, and how much we have to give.  Jake is fortunate that he has us, faith, and a strong community to stand with him as he faces his struggles.

Rather than treating autism as something that needs to be corrected, advocates want it to be seen as something to be accommodated, and that disability is largely situational. If someone is in a wheelchair, you can either focus on curing the reason they’re in the wheelchair and let them wait at the bottom of the stairs until you’re done, or you can build a ramp. Neurodiversity advocates want ramps for our brains. What exactly that looks like is still a work in progress, but I encourage professionals to embrace it. Work with us so we can live our best lives.

http://nosmag.org/neurodiversity-for-therapists-is-not-an-oxymoron/

I feel like sometimes I am the one who needs the therapy.  I need someone to come in to my house and reward me for staying calm when Jake sings the same three notes at top volume for over 20 minutes.  I need someone to reward me for realizing when he is feeling overwhelmed and when he is strategically driving his little brother insane with purpose.  I would love to be coached on how to come up with things to help everyone stay cool and comfortable while I am making dinner.  Unfortunately, there is no funding for that.

I jest, but in truth, I am realizing more and more that it is me who needs to change.  I discovered this website today, https://theantioppressionnetwork.wordpress.com/allyship/  and it explains allyship as

an active, consistent, and arduous practice of unlearning and re-evaluating, in which a person of privilege seeks to operate in solidarity with a marginalized group of people

I am that person of privilege.  Social situations make sense to me.  I thrive on conversation.  I talk out my feelings.  I excel in interviews, in group situations, and don’t notice when things are out of order.  I can keep my train of thought for several days, or several minutes, keep two conversations going while cooking and keeping an eye on three kids.

But.

But I love autistic people.  I love people who are disabled.  I will stand with them work with them.

I believe that autism is a disability.

The distinction people are making is between the medical model and social model of disability. The medical model of disability, for those who may be unfamiliar, puts an emphasis on a disability being something ‘wrong’ with a person. In that model, disability is something to be corrected. Disability itself is seen as a source of reduced quality of life. The social model of disability, on the other hand, focuses on negative attitudes and physical barriers imposed by society, rather than perceived “flaws” in the individual. Neurodiversity rejects the medical model. It does not reject the concept of disability or deny that impairments exist. The primary difference is how disability and impairments are considered and addressed.

http://nosmag.org/neurodiversity-for-therapists-is-not-an-oxymoron/

I had a conversation last summer with my sister-in-law about disability.  She said that it seems like being autistic is a disability mainly because we (society) don’t understand, don’t make it easy, and put up obstacles for people who do not belong to the neurotypical majority.  She suggested that being autistic was almost like being evolutionarily advanced, in a sort of way, except that the society is restricting the advancement.  It resonated with me and I am still chewing on the idea.

 

Force Awakens Dealer by Jake
 
I believe that the goal of therapy is to support Jake and teach him how to manage being autistic. I hope that learning strategies that work for him will increase his confidence and abilities to negotiate within our world and not lose any of what makes him who he is.

I believe that I have a role to play in educating all those I can.  Everyone who knows him, everyone who knows an autistic, everyone who knows someone who is different and who is a minority and is therefore marginalized by the way our society runs.  I can’t tell those in human resources that when hiring, to hire every shifty eyed individual.  However, I can increase acceptance and understanding of different ways of communicating.

Most importantly, I can have faith in Jake.  I believe in him.  I believe in his abilities to solve problems.  I believe in his dreams.  I believe in his heart, his gifts, and his growth.  I believe that he is created by a fierce and loving God who knows what he is doing.  I can wait, I can watch.  I can hope and I can pray.  And I can find what I believe and stand firm in it.

Rest

Activity and rest are two vital aspects of life. To find a balance in them is a skill in itself. Wisdom is knowing when to have rest, when to have activity, and how much of each to have. Finding them in each other – activity in rest and rest in activity – is the ultimate freedom.
― Sri Sri Ravi ShankarCelebrating Silence: Excerpts from Five Years of Weekly Knowledge 1995-2000

I struggle with balance.  There are women who juggle a career, hobbies, friendships, family relationships, children, yoga, healthy eating, and a spouse and make it look easy.  I am not that woman.  I love those women.  They inspire me and make me feel like cheering for them.  As much as it looks easy, I know it is not.  I am constantly trying to work on self-improvement.  I want to do better with balance, I want to take better care of myself and do better in my relationships.

This past weekend I was able to go away on a women’s retreat with about 25 ladies from my church.  The focus and purpose of the weekend was rest.  I shared a room with a dear beloved friend, who didn’t mind that I wanted some time to rest and be alone.  I left my children and my husband and my house and my mess and my stress behind.  Oh!  It was so amazing.

I prayed.  I read.  I wrote.  I rested.  I reflected.  I slept.  I laughed and I coloured in my brand new colouring book for grown-ups who can’t settle into any other hobbies or stick with yoga.

Every person needs to take one day away.  A day in which one consciously separates the past from the future.  Jobs, family, employers, and friends can exist one day without any one of us, and if our egos permit us to confess, they could exist eternally in our absence.  Each person deserves a day away in which no problems are confronted, no solutions searched for.  Each of us needs to withdraw from the cares which will not withdraw from us.
― Maya AngelouWouldn’t Take Nothing for My Journey Now

What’s more, the blessings have continued into the week.  Thanks to my parents loving and wanting to spend time with our kids, my husband also had some time and space to himself this weekend.  He worked on cleaning the house!  What a treat.  We even had some time to reconnect and talk before we had to pick up the kids and get back into the noise.  Then last night I went for a manicure and had my nails done.  And today I was able to sneak away while my husband was home for Remembrance Day and go for a massage.

I feel better.

Jake has been clingy and really missed me.  He may be also getting sick.  But I feel like I have enough energy to love him and snuggle him as much as he needs.  Aiden is going through some struggles, I think he feels like he is powerless and left out a bit.  But I feel like I have enough time and energy to play attentively and do things he wants to do.  Penny is just such a dear.  She is no trouble.  But if she decides to throw her food at the cat or unpack all the books from the shelf, I am totally cool.

And so, because I am smart and I can figure this all out, I can see that while it is impractical to go away every weekend and spoil myself all the time, taking better care of myself and allowing myself to be alone and quiet results in clear benefits for everyone I love.

I need to make rest a priority.  Daily.  Weekly.  Monthly.  Yearly.  I need to be alone and not worry.  I need to be quiet and not plan, not organize, not strategize.  It’s one of those things I have long understood, from an academic perspective.  However, I have never experienced it quite like this.  I think the years since I became a mother have flown by.  While I knew I needed space and rest, I didn’t know how it could possibly be obtained when everyone needed me so much.  Now I feel that everyone needs me to have that space and rest.  I believe that I will actually be able to mother better, to give them more, if I take more for me.  I feel like it has changed for me from being an impossible dream to being a crucial reality.

I will have to make some pretty firm boundaries with myself, as this is exactly the type of thing that I think of, and then it slips away from me and I never can recapture it. I resolve not to lose this one.  I will rest.

He makes me lie down in green pastures; He leads me beside quiet waters. He restores my soul; He guides me in the paths of righteousness For His name’s sake.

Psalm 23:2-3

Observations and Reflections from Halloween

Halloween was interesting.  This year, Jake he decided that he liked scary decorations and actually wanted to put some up in our yard.  I declined.  He wore a Chewbacca costume with a mask.  That he loved.  A mask!  Covering his entire face.  This is incredible to me.  His first Halloween he was a tiny baby and I put him in a tiger pajama set.  When he was one he wore a turtle outfit that was soft and warm and he had no choice about.  When he was two he wore a full monkey costume that I picked out again.  He didn’t love it, didn’t get it, and never wore it again.  Then when he was three and four he wore a hooded sweater with an animal print on it with no face paint and only my word that it was a costume.  Truly, he looked adorable, like adorable Jake in a sweater.  When he was five I carefully prepped him and set him up in a fireman outfit.  It was simple and easy and he practiced at home even a few times.

When he was three and four he didn’t once wear pajamas to preschool on pajama days.  He has never done his hair crazy on a crazy hair day.  He has not worn a career day costume, a twin day costume, or a hero day costume.

But this year he wore a full Wookie costume.  And he loved it.

Our little family had joyfully trick or treated to about 8 houses in the neighbourhood when he slipped on a patch of wet cement and fell down.  He dissolved in tears and lost all control, all joy, all peace, all hope of continuing.  He had to go home and spent the rest of the evening answering the door and handing out candy with his sweet Oma.

Aiden continued trick or treating another 40 minutes or so.  It was a blast.  He was so thrilled and we enjoyed the time with just him immensely.  I am getting better at seeing what Jake needs to be happy is just different, and that it is okay so long as he really is happy, and he was.

When they were reunited, the boys exchanged stories about the other trick or treaters they had seen and ate some treats.  Aiden had so much more candy that I poured all of it into one big bowl and declared it was for them both to share.  Mom’s word is law here, and they accepted it without any problem.  After all, they were eating candy.

I am left in awe and wonder at the whole event.  The differences between my two sons seem to be increasing right now.  Despite Jake’s growth, progress, and maturation, Aiden is always going to be the one who wants to be out later.  He will be the one who wants to join the baseball team, to go down the waterslide.  Aiden will be picking between girls in high school.  Aiden will be popular, confident, athletic and social.  Aiden will have three times as much candy.  Aiden will have a date for the dance.  Aiden will not need me like Jake does.  He will need me, but it will not be the same.

It’s a blessing, to be sure, that Jake is autistic and doesn’t notice all of this yet.  By the time Aiden notices, he will be older and I am praying, he will be deeply compassionate and loving towards his brother.  I am praying for a strong and true friendship between them, that when they get to middle and high school, that they can support each other, be friends with each other’s friends, and stand beside each other through their tough times.

Aiden hit the pillow Halloween night and fell asleep to peaceful dreamland instantly.  He’s so much like me.  Jake lay awake, replaying the day, I’m sure, and listening to us downstairs as we answered the door and continued to give candy to the stragglers.  He couldn’t sleep until I had told him what their costumes were.  They are so different, my boys.  And I love them both so much.