Tag Archives: respect

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

In Honor of Autism Moms: Motherhood

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It happens regularly: I am performing for a group of families, singing and dancing and genuinely having a great time with everyone. The room is full of children’s laughter and song and unabashed joy. Wow, I think, I have the best job in the world, playing music and making people happy.

And then there’s always one kid, with a very tight look in his/her eyes, who just seems to be on a different wave-length, not quite noticing other people’s space, not quite noticing his mom’s pinched face, not thrilled with the number of times she comes over to stop him from somersaulting off of a chair, or doing handstands in the chair, or twirling around so enthusiastically that he smashes into a little girl who was busy dancing as well. Not able to sit still, not able to find a comfortable place in the room, not quite at home in his skin…

The poor mom, I think. How can I let her know that I get it, that I see, that I know that he has Autism, that I know what life is like at home, that I know how much she wants him to have fun but how scared she is, maybe even terrified, that he will hurt someone unintentionally? I want to give her a hug, stop the music, just let her know that I for one am never going to judge her or her kid, because I have been there so many times. I do catch her eye as she careens past me to catch him before he dive bombs off of the chair, and I whisper mid-song, “It’s ok, he can move, he’s responding to the music and it’s fine.” And I do honestly mean that, because I notice how he actually is making sure that he isn’t near anyone else after he nearly knocked that other little girl over. And he is very engaged in my songs, asking me questions at appropriate moments before he dances off again.

But the poor mom. She just looks exhausted as she gives me a quick smile on the verge of tears. Is that what I looked like when my kids were younger, I wonder? I know that was what I felt like for so many years. That mixture of desire for my kid to experience the ease of childhood that other children seemed to have that eluded him on the one hand, with the terror that he would do something inappropriate, odd, and draw attention to himself and hurt someone else on the other hand. The desire to just be able to take him to the same events that other people’s kids went to, that my other kid could go to on the one hand, mixed with the fear that something was terribly amiss with my kid on the other hand. The frustration of not understanding why simple things seemed to send him into overdrive while the other kids could continue at play.

Motherhood (and fatherhood for dads as well I am sure) is a journey for everyone, no doubt. All children have their ups and downs, all children have times of more or less need, and all parents have the same. But Autism moms have a journey that is just a little different than the experience of mothering a neurotypical kid.

I have one of each…one neurotypical child, one with Autism. When our son started high school at the school our daughter had just graduated from, I told the staff that they really needed to work with us as though we were a family that they had never met, because how we parented our daughter vs. how we parented our son made it look as though there were two different sets of parents involved. In her four years at school, we were there for parent-teacher conferences and celebrations. In his four years, we were often writing daily emails, in and out of the school weekly, on the phone a few times a month. They got to know us quite well! In college, we went with her to accompany her at the beginning of freshman year, to pick her up at the end, and then for a few plays and graduation. He is in his second year at Art School, and we have already had three meetings with the Dean…. learned about policies that I never knew existed, etc.

We have many friends who no longer stay in touch with us. Might not be anything to do with being Autism parents, but on the other hand, these same friends would often comment on how intense we had become, how we seemed to have lost our zest for life, how we were really a little too involved in the parenting thing, how we were too overbearing in how we were raising our son. There wasn’t much I could say, except quietly acknowledge that they probably would never understand because they would never have to walk in my shoes. They probably didn’t know what it was like not to sleep through the night until he was six, or how just getting out of the house with everyone in one piece could be a massive energy-drain, or how every day was one of waiting for the meltdown to happen, or how a new MD would wonder why you showed signs of PTSD but had never been in active combat, or….or….or….If you have a child with Autism, you will likely have your own examples!

I can’t usually stop a performance to tell a mom that I recognize as an Autism mom that I get it and give her a hug. I also never know if her kid is diagnosed, if she would welcome the recognition, or if she is still fighting to keep that diagnosis at bay. I don’t know if I would make her feel good or devastated. I can of course just give her a smile and a hug in recognition of all that she is doing, without any specific reference to Autism, and that I do on a regular basis.

Here’s to the Autism moms and moms of kids who are the non-conformers, who don’t fit the expected molds. We are a fierce and loving bunch. We are the mama bears. We will not let someone dis our kid on the one hand, but on the other hand we work hard to keep our kids moving forward out in public. We know that society’s judgments are unfair on one hand, but we want our kids to be able to handle being in public on the other hand. We want our kids to grow up to find their way in the world, just like every mother, and we have discovered that in order for that to happen our kid might need a little different kind of parenting than the neighbor kid next door.

Here’s a virtual hug to that mom at today’s performance. And here’s a song called, “Motherhood.” A little late for Mothers’ Day, but better late than never J. This is for all moms everywhere, with a special hug for Autism moms.

But First Do No Harm

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But First Do No Harm:  Yes it’s part of the Hippocratic oath, but it has also been the phrase that has guided both my parenting and my teaching, more or less successfully depending on the day!  It is also the name of my newest musical project, sharing “concert-conversations” about disability awareness and inclusion.

My devil’s advocate friends often ask me, “But everyone knows about disabilities, they don’t need you to make them aware.”  Yes, in principle, most people do know about disabilities.  They certainly know how to recognize someone in a wheel chair, someone with a physical disability.  But what about invisible disabilities , like ADD, ADHD, Autism (ASD), Learning Disabilities (LD)?  While people know about them from reading about them, they quite often do not recognize what they are looking at when they meet someone with one of these labels.  And they often do not understand the trauma and frustration that accompany those labels.  Or how those labels may have an impact on a child’s behavior.

As I have observed often throughout my life, a person with autism looks like anyone else their age, but when people start to talk to them, they discern something different.  But they don’t know what.  And the usual response is to move slowly away.  People rarely say to themselves, “Oh, s/he has autism.”  They more often say to themselves, “Oh, s/he is weird.”  Instead of moving away, an alternative response could be to think for a moment, “Oh, this person is different, I need to figure out a different way of conversing.  It’s okay that they are not like me, we can still figure out a way to communicate.”

How different the world would be if we did that with everyone we met throughout our days!  We might then not have xenophobia, or homophobia, or autism-phobia.  If we weren’t busy “othering” people, we might be able to have friends and acquaintances that are very different than us, and respect and appreciate differences rather than fear them.

Autism is very different than a physical disability…and first of all, is it even a disability?  Depends on who you ask.  Whether you think of autism as a disability or not will have a big impact on how you interact with someone with autism.  And whether you are one of those people who pulls away or leans in (not physically maybe, but with your intention) will determine what kind of conversation and respect you are showing the person with autism.

When my family and I first arrived in the United States, my son was 3 and a half.  He was mostly non-verbal, but understood and responded to two languages with no trouble.  Wherever we went in nature, animals seemed to gather, and not run away the way they would run away from me.  Deer seemed especially entranced by him.  Having just arrived from the Middle East, he was equally entranced by the deer.

As a musician, I sang to my children constantly, and he sang every song with me on key.  He could sing, but he couldn’t talk.  From the time he was born I knew that something was up, and had been trying to figure out how to help him without being scared by labels and diagnoses.  I wrote this song over a number of years, and it actually has a factoid that is now dated, that is no longer conventional wisdom about autism.  When I present it now, I ask the audience, “Do you know what is no longer true in this song?”  See if you can figure it out.

The name of the song is “The Deer Know Nothing’s Wrong”.  May we all learn that…..different is not wrong.

I look forward to hearing your thoughts!