Tag Archives: sensory processing disorder

A person’s right to fully participate in all aspects of society….

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Shepherding children to adulthood is a bit of a whirlwind. The school years are often one long race from morning ‘til night. But as any parent of both a neurotypical child and a child with autism can testify, there is great variance in the nature of whirlwinds… both my husband and I realized early on that our parenting style changes dramatically depending on which offspring we are with at any given moment.
Just a mundane example: Looking back at the 13 years that our neurotypical daughter, who is now 26, was in school, we dutifully appeared for the standard parent-teacher conferences and events where her teachers heaped praise on her. In contrast, during the 16 years that our son, who has autism and is now 24, was in school, we were there for IEP meetings multiple times per year for ongoing consultations with teachers and administrators multiple times per year, disciplinary meetings, emergency meetings, negotiations about behavior plans, and then of course those same parent-teacher meetings and events. Vive la différence! I was a virtual stranger to my daughter’s educators; I was a regular installation for my son’s.
I began my teaching career before I had children. I loved learning about the theory of multiple intelligences and different learning styles and used this information regularly as a music teacher. This background in education and child development certainly helped in parenting as well. As a disability advocate now, I often run into parents who honestly don’t know that their children’s development is different than what it should b, because they are not in a field that requires that knowledge. Having a background in education helped me identify early on that our son was wired differently, and that all those big books about the stages of child development did not actually apply. I knew we were in foreign territory, and I knew that I didn’t know what to do.
Our son is a poster child for multiple intelligences and different learning styles. I am eternally grateful for all the educators who have worked hard over the years to figure out how to reach him, encourage him and recognize his strengths. As a parent and educator in the world of special needs, I know both how difficult this can be and how essential it is. Along with these wonderful teachers though, there is sadly also an equally long list of educators who did or still do not seem to have any patience or desire to work with someone who’s learning style was or is outside of their comfort zone. Some were downright abusive, some just impatient, most (of this list) just could not figure out what his story was.
Fast forward: Our son is working very hard to finish art school, where he is studying hand-drawn animation. Art school has been an amazing blessing for our son. He has learned so much, and the school has mostly put up with his very unique learning curve. No complaints. Well…. maybe just one.
Not a complaint actually, just a plaintive wish. I so wish that anyone interfacing with students, of any age, would have some understanding of invisible disabilities like Sensory Processing Disorder and autism. Though there are certainly many people with autism older than my son, he is of the “tsunami” generation, when the numbers of kids diagnosed with autism exploded from 1 in 10,000 in 1970 to 1 in 1,000 in 1995…and of course the explosion has continued, because now, (depending on which office of the CDC you listen to), the numbers are either 1 in 39 or 1 in 58. The statistics for Sensory Processing Disorder are even higher, 1 in 6. Autism is no longer rare. Sensory Processing Disorder is everywhere. Mental Health departments on college campuses are expanding beyond any recognition of the mostly unused offices that they were in my time.
So, educators of any age need to know what autism looks like, beyond the dry words of description in the book. When my son verbally expressed his excitement on the first day of the semester’s drawing class, he did so in a way that seemed odd and not age-appropriate to the neurotypical professor. He then leaned over to compliment another student’s work, and the professor saw someone who didn’t seem to understand personal space. And then he dropped his metal water bottle a few times. Apparently, he also didn’t understand that the class was supposed to stand in two lines to show their work at the end of the day, and he was pacing back and forth waiting. In short, he was exhibiting signs of autism, and using strategies to help him process the sensory overload at the end of the day. And at the end of this class, as instructed by the Learning Support Office, he handed the professor his letter of accommodation explaining about his disabilities.
I only know all of this because, despite the letter, the professor reported to the department chair that he didn’t know what to do with my son because he was disruptive, and I was called in to hear that my son was being put on probation for the entire semester. What is the nature of the probation? That he is not allowed to make any noise on campus.
I am definitely convinced that the professor is doing the best he can with what he knows. I do not think bad of him. A classroom is a public space and growing up we all figure out how to conform our personal expressions in public so as to be culturally appropriate. My son needs to learn what works around neurotypical people and what doesn’t. Ableism is still around big-time. So, I’m not complaining, I’m just repeating my plaintive wish: I so wish that anyone interfacing with students, of any age, would have some understanding of invisible disabilities like Sensory Processing Disorder and autism. And of course, why confine this wish to educators interfacing with students? I so wish that people everywhere would have some understanding of invisible disabilities like Sensory Processing Disorder and autism.
In Item 2 of Sec. 12101 of the ADA Amendments Act of 2008, it says:
(2) in enacting the ADA, Congress recognized that physical and mental disabilities in no way diminish a person’s right to fully participate in all aspects of society, but that people with physical or mental disabilities are frequently precluded from doing so because of prejudice, antiquated attitudes, or the failure to remove societal and institutional barriers;

 


Sigh.

https://tacanow.org/autism-statistics/
https://www.ucsf.edu/news/2013/07/107316/breakthrough-study-reveals-biological-basis-sensory-processing-disorders-kids

Thanks-giving and Compassion-giving

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Though our world and Western society are forever changing, and many people bemoan the loss of “the good old days,” the annual American tradition of Thanksgiving is coming, as it does every November in the United States. The name of the holiday serves its purpose well: to remind us to give thanks for our blessings. And in Judaism we have a wonderful “first thing in the morning” blessing of giving thanks every day… giving thanks that we woke up and can still breathe! It’s not something to be taken for granted at all … and it is easy for me to be thankful for the simple things in my life, the things that I might not pay attention to because they have always been here, such as air to breathe, water to drink, enough food to eat, clothes to wear, a roof over my head, warm clothes and a heated home in the cold season, a loving family…really I don’t actually need anything more than that, and I have so much more.

As a parent, I spent lots of years trying to teach my now young-adult children to have the perspective to be able to recognize the blessings in their own lives, to recognize that “there but for fortune” (to coin an old Phil Ochs song) their lives could be far less comfortable, and though perhaps their circumstances are less than Hollywood fantasy movie-ish, they have so much to be thankful for. Both have definitely grown to understand that, but…my youngest struggles on a daily basis to maneuver the world with autism, Sensory Processing Disorder, anxiety and severe learning challenges.

While he definitely has much to be thankful for, and certainly “there but for fortune” he would not be where he is today, it is also very true that the world he walks through is not at all the same world that I walk through. He often says to me, “You have no idea what it is like to be me.” This sentence became the title of a song that I wrote in an attempt to explain Sensory Processing Disorder to teachers and community members who do not understand the seemingly pointless melt-downs that happen in public for so many children and young adults these days.

Having a son with autism has taught me compassion on a very deep level. I do think that as a young adult I suffered from “ableist” arrogance: I was very capable academically, I could play music and sing, I could run and do athletics, I could speak and hold my own in intellectual small talk and crowd banter, I could walk through the streets of Jerusalem (my home in my twenties) and pay attention to everything that was happening, but then turn all of that stimulation off and relax at home once I got there. None of these daily activities ever crossed my mind as something that everyone couldn’t do, as something to be thankful for. In retrospect I realize how very naïve I was of course.

My son is a kinesthetic learner, and excels at his passion, drawing and animation. He is also a talented singer. But that is where the overlap between his skills and the skills I had at his age end. He struggles to retain facts taught in academic classes. He says his brain literally hurts when he is trying to memorize details. He cannot run or coordinate his body well. He cannot follow small talk on any level; growing up in an intellectual Jewish home has made him far more insecure in this area than had he grown up in a home with people who were less talkative. But more than anything, walking through the streets of Columbus, Ohio, where we live now, is one long string of stressors and fears.

Ableism and othering go hand in hand. Having been thrust into the world of special needs by virtue of my son, I have been given the gift of needing to understand the world through eyes that do not see what I see. Ableism is a word that has been coined to refer to how much of western society is structured, under the assumption that everyone has the same physical abilities, and that if you have a “disability” you are inferior. Othering is when you choose to differentiate between those you think are similar to you, in whatever way you are choosing to define yourself, and others who are different and therefore not part of your “group.” We live in a time where othering is rampant and dangerous and very much in the spotlight. Ableism is much more subtle, especially in the case of autism and Sensory Processing Disorder, which are conditions that are often invisible to the external eye.

I know that my son suffers from Sensory Processing Disorder and I can often help him through overload. But what about the person on the street who is clearly having a hard time, perhaps a person on the street who does not like my bumper stickers or my political pins? I don’t know that person, but I think it is fair to say, just as my son says to me, that I have no idea what it is like to be them.

So, at this time of Thanksgiving, I am consciously saying thanks for the many blessings in my life, from the mundane to the more complex. I am also reminding myself never to assume what someone else should be thankful for, never to assume that I have any clue what someone else’s life challenges are. I am asking all of us, whoever we are, to practice a little understanding and perspective and tolerance as we enter the darkest time (season?)of the year…to bring the light of compassion and stop the practice of othering. Because, I/you have no idea what it is like to be them…

“First Day Butterflies” or “First Day Angry Dragons” in Your Belly?

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Young people all over the northern hemisphere are starting back to school at this time. Locally, some school systems started last week, some this week, some next week. My 22-year-old son, who has autism, is going back to his third year at art school….and feeling anxious about the new beginning, to say the least.

This morning, I received a notice from the blog published by the Children’s Music Network (https://childrensmusic.org/), about a sweet song that my friend Dorothy Cresswell had written, called “First Day Butterflies.” http://blog.cmnonline.org/2017/08/22/first-day-butterflies-by-dorothy-cresswell-on-tuneful-tuesdays/

I was so touched by Dorothy’s song and the stories of how she would greet her new students on the first day of school that I found myself with tears in my eyes. And I stopped to wonder why I was having that response. As I was wondering, my son came dragging into my office, breathing heavily, a look of deep sadness on his face. Ah, of course, I thought to myself, this is why: he doesn’t have “first day butterflies,” he has “first day angry dragons” that are raging around in his belly. And they don’t flare up just the day before the first day of school, they flare up anywhere between a week to three months in advance. Would that there was someone like Dorothy greeting returning college students to campus on the first day back to classes each semester.

Every new beginning brings on a fresh wave of anxiety for many people with autism. No matter how many times my son has done something, no matter how familiar the place is – getting there again, starting something again, walking into a room with other people AGAIN, still brings on waves of anxiety.

I am in awe of the courage he must muster every day to get up and go out and face the world again. Negotiating the vagaries of social interaction is exhausting for him. He tries and tries to get it right, and so often is shunned and excluded because he just doesn’t hit the culturally accepted mark of social interaction. Though he regularly reviews what the “right” thing to do is before he leaves the house, when he is out in the world trying to function, he often gets flustered and confused and his responses come out messy. And people are not very forgiving it seems when someone comes across as odd.

Anxiety is a huge part of both Sensory Processing Disorder and Autism. When your senses are not reliably delivering information to your brain, you feel very unsure of the world. As you get older, you hopefully develop some strategies and some experiences that let you know that all will be well in the long run. But unfortunately, for my son, all isn’t always well, and the confusion of trying to manage social interactions when you haven’t had a lot of success in the past just exacerbates the anxiety.

Current statistics place Sensory Processing Disorder as affecting one out of six school age children in North America, and it is probably similar numbers in other parts of the world. That is a lot of people who are struggling to handle the world with “angry dragons” in their bellies. I always thought butterflies in my belly were bad enough, but I know that the intensity that my son experiences is far harsher than any kind of “first day butterflies” that I ever did.

So to all of the educators out there, thank you so much to those of you who know how to help children over their “first day butterflies.” Let’s all be aware that some people have “first day angry dragons,” and let’s be kind, patient and tolerant when someone’s responses are a little different. Perhaps they are in the midst of battling a dragon.