Acceptance – An Autism Home Leads By Example

I loved this post from @autism_lovers – it demonstrates how much acceptance is part of daily life in a home with autism.

Living with autism means that differences are not just tolerated, but that they are appreciated.

It means being a top-notch detective and trouble-shooter.

Living with autism means learning to be flexible, patient, and – above all – incredibly creative. 

I feel blessed to have the opportunity to work with children with autism in the realm of physical activities – I make a point to take note of the parents when they drop their children off, and during any and all interactions they may have. Each child is different and I am ever astounded by how well parents navigate often choppy seas. I know that behind the scenes it isn’t always the smooth sailing we see…and I think that makes me appreciate, all the more, how much those parents do each day to ensure the best communication and opportunities possible. 

As someone on the outside, I want to commend those parents who live this daily. In a way that you may never realize, you touch others’ lives too. You teach the rest of us how important it is to accept one another as we are, to be patient, to love to the full, and to laugh (especially to laugh!) even in the face of adversity.

#doL ❤ VE”

 

Advice From Stephen Hawking

Advice I believe is great for everyone, regardless of circumstances…

As someone who has the honor to work with children and adults with disabilities, I can safely say I have never found a more motivational set of individuals. In spite of sometimes substantial adversity, I watch them not only push their limitations, but sometimes also overcome them entirely. I believe it is absolutely crucial to focus on the positive – the unique talents, interests, and abilities of each individual – and to downplay the weaknesses.

Now, that’s not to say we can’t recognize areas that need improvement – whether for ourselves or another individual, we need to know what in our lives and development needs some TLC (or flat-out hard work!) However, making a point to emphasize our abilities is a surefire way to keep us in the most positive head space possible. When facing some of life’s challenges, a great attitude will make all the difference. 

The other day at a volunteer session, a mother was inquiring about activities for her daughter, including Martial Arts – beyond autism, her child has been through surgeries to correct club foot and other impairments to the feet and lower extremities. The doctor was trying to steer her clear of many activities and yet…here was this young lady actually running around. I spoke to the mother, making clear I have no medical background (but a lifetime’s worth as an athlete), and explained that sports can be modified. So long as we have the proper instructor who is aware of our challenges, there is no reason that many more sports could be available to her than suggested.

For example, this young lady was able to participate in ballet to some degree. I watched her not only walk briskly in our gymnasium, but also run at times, further confirming that she has a great deal more ability that it appears she is (externally) being credit for. I encouraged the mother to look into specific Marital Art programs, and to not be discouraged by the “can’t do”s. As Stephen Hawking alludes to, to handicap ourselves mentally can be incredibly damaging – we needn’t add to our own, or another’s physical difficulties.

The truth of it is, we all have strengths, weaknesses, injuries and physical limitations. In the majority of cases, we all have some mental challenges as well – low self-esteem, insecurity, self-doubt to name a few. To focus on what IS possible, and what we ARE able to do can make a massive difference in the quality of our lives overall, as well as contribute to our success in our activities, careers, and relationships.

I will ever and always be in full support of “focusing on the positive.”  It isn’t about being idealistic, but recognizing that what we focus on can literally alter the course of our lives – what we dwell on becomes our reality and all we see.

Focusing on our strengths not only helps us to weather the working-on-our-weaknesses better, but also the ups and downs of life. It gives us the strength and courage to carry forward, to makes strides in spite of anxiety or fear, and to find happiness, fulfillment and success in spite of tipped scales. The sky is the limit when we have the right attitude. Period.

Autism Humor – I’m Taking It With Me

I have the honor to volunteer with many children with autism and there are some things that just go with the territory (aside from the fact that I’m always smiling – they light me up every time! 🙂 )

Many of the children I have the joy to work with like to bring personal items along with them to play time (or wear something they love.) We typically don’t allow them to bring toys from home, heaven forbid something is lost in the shuffle – the organization I work with has a TON of toys for the children to play with, so outside items could easily disappear.

Still, when they really WANT to bring something (for example, little felt pieces in the shape of animals) chances are a mountain will be made into a molehill by not going with the flow. Trying to separate them from a comfortable “known” can be a lot more trouble than it’s worth and frankly, at the end of the day, there’s nothing at all wrong with that (particularly in a less frequented environment.)

We do, however, have to keep a sharp eye out so that they also go home with everything they brought along!

Learning About Life Through Another Lens, And How Blessed We All Really Are…

Some weeks ago I started an ASL (American Sign Language) course online – I regularly volunteer with children with disabilities and had asked a mom (whose four year-old boy both has autism and is deaf) for some ASL resources. Her son additionally suffers from a little bit of separation anxiety, which isn’t horribly uncommon with autism – when he comes to our volunteer play sessions, there are times that he begins to cry and it’s terribly tricky to discern what will make him feel more comfortable. While I was already interested in learning ASL (up to 50% of autistic individuals are non-verbal), this little guy was enough to get me on the road to finding a class…as soon as possible.

The awesome news is that I also volunteer with Special Olympics-driven skating sessions once a week that includes a number of children who are either hard of hearing or completely deaf. There’s nothing quite like being able to communicate with them – being able to sign even a single word is exciting! (I definitely have a way to go!)

A couple of days ago, though, I came down with a cold of some kind – as a result of contagiously coughing, I lost my voice – and I mean completely. Talk about being in someone else’s shoes…

Horribly uncomfortable a “bug” is for any of us, it’s nothing compared to what some children and adults have to deal with on a regular, and life-long basis. In a strange way, I feel thankful that I can’t speak because it’s an exercise in understanding what it *might* be like – while I consider myself to be one of the most empathetic people I know, it is impossible to fully understand anyone’s experience without being in their skin.

I have lost my voice on one other occasion – remarkably, I was 16 spending a month in France, with very little French under my belt. I guess life likes to test my ability to communicate (which – as is clear – is NOT always done with speech.)

In any case, it’s as the saying goes – you don’t always realize what you have until you lose it. I’d never anticipate not having the ability to speak was an easy road…but it is a welcome experience. (Now I’m not exactly encouraging anyone to go out to a concert and scream at the top of his or her lungs to deliberately subdue the vocal chords…I’m just saying, there is good to everything. Yes, including getting sick and losing a primary means of communication.)

Now my husband has a little bit of a challenge playing the guessing game as far as “what is my wife trying to say now?” He’s doing a remarkable job of deciphering, decoding, and understanding what I am trying to say, and that’s not easy to do! So I’m very fortunate to have the support and patience.

Going to the store is also an enlightening experience – I can’t say “thank you,” or “excuse me” as I normally would, nor can I respond vocally to others. That leaves me feeling a little bit awkward as reciprocal speech is one of the key forms of communication many of us learned from infancy. When I indicate with gesture and my lips that I have lost my voice, people either immediately begin to whisper or act altogether more gently – it’s incredibly interesting! (I actually can’t even whisper, as that puts more stress on the vocal chords than speaking does!)

The other side of it is that I’m derailed from my activities – in part I simply don’t feel up to them physically. The pain and discomfort though. . .I think about all the children with autism suffering from sensory sensitivities without the ability to say “those lights are hurting my eyes,” “this fabric makes my skin burn,” “my chest hurts….” What is life like for them? Many “behavioral issues” are a result of such a scenario – they don’t have a means to say what they are feeling.

For the children who are deaf or hard of hearing, thankfully they do have words at their disposal (albeit non-speech, hand / facial /body gestures.) I learned “sick,” “feel,” “bathroom,” and “okay?” as quickly as I could. Fortunately I’m learning many other words too…but knowing that it will take time, it’s important I know some basics.

Even if I was feeling better, my usual day-to-day would still be a substantial challenge – I can’t make a singe phone call, for one. I can’t ask for help locating a medicine at the store. If I were in an office, I’d have to type everything out (doable, but less efficient.) I certainly can’t breakdown a Ninjutsu technique the way I could by asking questions in class, and I definitely can’t teach or volunteer. I have to rely on gestures to talk to others I might run into in my own apartment building because I am utterly devoid of my usual method of communication…

So it’s been a remarkable few days…

While I’m sure it’s not fun to be around me while I’m loudly coughing, slower-moving, and unable to answer even the easiest question, I feel truly thankful for the experience. In fact, I’m taking the opportunity to review videos from the ASL course modules that I’ve already completed – I will hopefully be seeing the Special Olympics kids on Wednesday to skate and I know a few happy ones who use ASL exclusively. 🙂 

Autism And Other Pervasive Disorders – Idioms And Literal Language

I’ve been taking a graduate course in autism spectrum disorder (ASD) over the last few months and I’ve loved it so much more than I can say. Having been out of the school circuit for 17 years, it’s definitely been eye-opening across the board! But nothing beats the feeling of learning more about ASD and other pervasive developmental diseases – I’ve truly found my passion, and am ever eager to apply what I learn to my volunteer work with children, teens, and adults of varying disabilities.

In a recent discussion we talked about idioms – a type of “language” that we all use without really thinking about it. Neither, therefore, do many of us consider the implications on individuals with autism or other developmental disabilities and delays. As I prepared for the discussion, I realized that I couldn’t think of any I had used “off the top!” Sure enough, as I snooped about online, I discovered I use quite a few. For example:

All ears                                                It takes two to tango

Blessing in disguise                          Method to the madness

Chomp at the bit                                Not playing with a full deck

Cry over spilt milk                             Off his rocker

Curiosity killed the cat                      Once in a blue moon

Devil’s advocate                                 Over the moon

Silver lining                                         Piece of cake

Hit the hay                                          Speak of the devil

Hit the nail on the head                    Take it with a grain of salt

My classmates also came up with a hefty array of phrases, many of which I hear or say myself (“I lost my marbles!” comes to mind. 🙂 )  In combination with meticulous observation of my own idiom usage (for the purposes of this assignment) I found that I say them with relative frequency in every day speech. . .as does just about everyone around me. The funny thing is that I actually had to look up examples – using idioms is so much a part of our language that I wasn’t even aware. This sentiment was, as it turns out, shared by my classmates…

Having learned throughout my course that individuals with ASD often take language literally – truly at its face value – I am now far more attentive to my verbal language when communicating with them. Paired with deficits in social skillsets (such as joint attention, inability to read body language, verbal tone, cues and so forth), the literal translation of idioms could pose a substantial challenge during interaction. Our course has touched on the multitude of challenges that children with ASD face in the realm of communication (which includes a lot more than just “verbal language.”) The point has also been made that it isn’t always obvious to an outsider that someone with ASD won’t understand conversation, as some have a large (and impressive!) vocabularies.

I recall once saying (prior to my class, in a volunteer capacity) “you could be a pro!” to a child with ASD kicking a soccer ball. He asked what I meant and I realized that I didn’t say “professional soccer player,” which is what I needed to express in order for him to understand my meaning. While not an idiom per se, the language was not complete – an abbreviation I took for granted was not clear to him. This experience was eye-opening and I realized I needed to up my awareness when conversing with an individual with ASD. It is not at all a matter of intelligence – I find many to be incredibly bright…and they are! – more that I need to recognize the common trait of taking words exactly as spoken. I myself have a tendency to read into what I hear, sometimes taking comments as literal and serious.

Despite that English is my only fluent language, I always loved learning foreign languages in school. I remember purchasing books that offered slang and street French / Italian (even Latin!) so that I could perhaps utilize the language in the way native speakers do…or at least follow their conversation. Slang and idioms are a HUGE part of a culture’s social structure – they are thrown around with such frequency that not understanding them can pose a substantial language barrier as well as, at worst, flat-out social isolation. Think about learning a new language in school, then being immersed in that culture. The stream of communication of someone native to the language will be riddled with idioms – we all do it! We might then find ourselves saying, “what do you mean?” just like the child with ASD asked me.

This is a massive task for teachers because there are infinite ways in which idioms may present, and there are in the order of twenty-five thousand in English alone. (Wikipedia, as retrieved from: https://en.wikipedia.org/wiki/Idiom ) We read an article written by Temple Grandin earlier in the course and she mentioned how she has to mentally retrieve visuals and concrete memories based on previous experiences to know how to respond appropriately in social situations – what a daunting task! When we study a specific technique in Ninjutsu (a current Martial Art of mine) we sometimes discuss that the founders of the Art did not always teach a follow-up submission or takedown with it – the reasoning was that there are so many permutations, the task would not only be overwhelming, but students would be trying to remember far too many combinations (diverting attention from the more important fundamentals.) Way to go, Temple, for mastering that ability!

In the case of language, however, not learning idiomatic expressions will absolutely leave a child at a disadvantage – out of the realm in which peers and others knowledgeable about their disabilities (and therefore able to accommodate), an individual with ASD may be left bewildered by the normal conversational style of society. Again, as above, potentially leading to isolation and less opportunity for interactions (which also means less practice!)

Teaching generalization is vital for the individuals, and I do think key idioms must be addressed. That all said, I think that a learning program must – as all instruction – be highly specific, and tailored to the individual with ASD. If he or she is at a level at which more can be mentally digested, perhaps more idioms can be taught – but I sincerely believe that core fundamentals of are crucial, and must – as an order of operations – be learned before attempting to master more descriptive, idiomatic expressions. (I did see, per the below, a plethora of visual representations of idioms, which would be a perfect way to introduce them to children with ASD!)

How Anger-Inducing Is Misophonia…Really?

The extent to which a person might be pushed as a result of misophonia is not to be taken lightly – we’re talking to the absolute precipice of “The Verge.” As we speak – oh, the irony! – someone is tapping above my apartment, and I feel this murderous rage coming over me like an insatiable wave. 

No, I’m not kidding. 

I’ve popped in my trusty 44 decibel earplugs (thanks to my amazing husband), and turned up the soothing  “Get High” by the beloved Rob Zombie. “I’ve been stepping on the devil’s tail. . .” Uh, NO. But so someone is seriously stepping on mine right now!

AAAaAaARRrrrrgGGg!!!!

Anyway, misophonia was recognized more recently as a *air quote* condition *end air quote* (oh boy, thrilled to have one of those!) But I can remember struggling with sound sensitivity for…well, as long as I can remember. This article suggests that those of us with misophonia have had bad experiences in life and somehow our wires got rerouted straight to the anger-zone as a result. Hmm. True on the experience part, but most people have SOME baggage by adulthood. Human beings, hello? That thing called life, psycho bosses, and bad exes?

There is some tie, per the above, to the emotional circuit boards when “trigger” noises are heard – on the one hand, I like that my anger can be explained by a trigger prodding my emotional headquarters with a hot poker. I *kind of* feel redeemed. But I also feel like there’s suggestion of emotional instability. Of course that depends on whether we are we speaking about when the noises are occurring or the overarching picture (minus the noises.)  Thanks-a-lot, anterior insular cortex.

*thinking face*

According to other sources, such as this one, there are indeed biological cerebral differences in those with misophonia, and those without. You better believe my frontal lobe and anterior insular cortex would be doing some kind of Martial Art should it be subjected to an MRI while simultaneously being exposed to chewing, breathing, tapping, or other noxiously incessant sounds. My brain vs. Floyd Mayweather? Man’s lucky he’s already famous.

Yet other science folk say that it’s okay for me to “blame my brain.” That’s nice. . .have a scapegoat at the ready. . . But I feel a little disloyal tossing my gorgeously grey matter (how gloomy and gothic!) under the bus.

“Yes, my elegant encephalous…under the wheels you go! . . .Aaannnd the wheels of the bus go round and roundddd…!!”

On top of what’s already ailing, the same article claims that there’s extra activity occurring in:

  • My ventromedial prefrontal cortex (more emotional stuff, self-control, risk alerts, fear mechanisms)
  • My amygdala (motivation, emotional behaviors…uh-gain), AND…
  • My hippocampus (short, long-term, and spatial memory) 

Geezuz, for someone who hates parties, what the hell?! (Maybe they’re doing extra workouts? That might make some sense…) But then there’s the whole I-love-heavy-metal thing – I’m not sure I’m able to reconcile the discrepancy save to say that metal sounds uh-mazing. Chewing, scratching, neighbor’s-baby-crying? Doesn’t.

I’m glad at least there’s a community of us Misophonians (yes, I made the word up) with whom I can commiserate. I liked  10 Things Someone With Mispohonia Wants You To Know for exactly such support. The fact that someone made this image (below) also gives me some comfort. . .(it shouldn’t give anyone ELSE any though, since I punch things for fun.)

There isn’t a cure for this sensory sensitivity but I guess in a strange way I’m thankful (maybe not WHEN the chewing or tapping is going on. . .but after!)

I recently was observing a three year-old boy with autism for a graduate class that I’m taking. I noticed his propensity for reaching towards his ears and asked the teacher whether he had headphones or earplugs, as I wondered whether the crying (which he exhibited about 75% of the time or more) might calm a bit. Well…yesterday I heard from a classmate that the teacher tried headphones, and the child is crying FAR less.  What a joy to hear that news! ❤

As much as I want to seek-and-destroy the things that make my ears scream like banshees…the idea that I might have helped one person as a result is amazing.

I’d also like to – very loudly – note that my husband is a trooper through it all. He is always incredibly conscientious because he knows how painful this truly can be at times (and that it really ISN’T my…or my brain’s…desire to be that way!) Support is key (so long as it’s silent.) 😉 *LOL*

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Emphasis On Can

I love this quote from Autism Speaks – there’s nothing more important that encouraging children (your own, or otherwise!) by focusing on their strengths and positives.  

Autism Speaks, Dr. Temple Grandin

The world critiques enough, wearing down the strongest and most brave. . . Therefore at least give children (if not also yourself and your loved ones!), unhindered by the “should,”s “can’t”s, and “bad”s of adult conditioning, the opportunity to meet life with confidence and a smile.