Wanna know the power you have in the universe?
Wondering if a village can move a mountain?
Unsure about whether every prayer and intention is truly heard and answered?
Balancing between family life with autism, self-awareness, and creative expression.
17 Jun 2014 6 Comments
Wanna know the power you have in the universe?
Wondering if a village can move a mountain?
Unsure about whether every prayer and intention is truly heard and answered?
02 Apr 2013 Leave a comment
Today we light it up blue, my beautiful boy!
In honor of you, my beautiful boy!
Because you are loved and handsome and fine,
And because I am honored you’ll always be mine!
17 Dec 2012 1 Comment
My friend Jill, who writes at Yeah. Good Times. has given all of us a tremendous gift. In response to the tragedy at Sandy Hook Elementary, she has written a brilliant letter explaining autism to her local school district and she has invited us to share it.
Jill’s entire post can be found here.
In the meantime, I feel so passionately about distributing this information to every teacher, counselor, parent, family, human being that I’m re-posting the entire letter below (with permission from Jill of course!)
Please, please, please share this. Don’t do it for my Alex, don’t do it just for your kid or neighbor or student. Do it for ALL kids everywhere. Because every step toward greater understanding is a step toward peace.
Thanks for reading,
Dear (school) community:
There has been much discussion online and in the news about the connection between the Connecticut school shooting and the fact that the shooter may have been diagnosed with autism. As our families and our community discuss this issue and try to find a reason for this heartbreaking tragedy, I feel that it is very important to remember the following:
There is no connection between planned, violent behavior and an autism spectrum diagnosis of any kind.
Autism is not a mental illness; it is a developmental disability. Many autistic people may have emotional regulation problems, which are impulsive expressions of frustration and anger, that are immediate and disorganized. They may lash out with threatening statements or behaviors, but these behaviors are impulsive reactions, they are not deliberate or organized plans. Once the situation has been diffused, the behaviors will stop.
What happened in Connecticut required methodical planning of a deliberate and tremendously violent act; this is not typical behavior of an autistic person.
Right now we are all struggling to find a reason why this kind of atrocity would happen, and we can speculate about the mental state of the shooter; about gun control laws; about the current state of our country’s mental health system, or about whatever else might help us make some sense out of this.
Please know, and please tell your children, that even if the shooter was autistic, autism is not the explanation for this tragedy.
If anybody has any questions about autism, please do not hesitate to contact me.
Thank you very much for your time,
Your name here
29 Oct 2012 6 Comments
Are empathy and compassion something we have to teach them?
This subject is fodder for heated debate among parents and professionals and educators right?
Get over yourselves, people! Kids with autism already have empathy. It’s just that we’re looking at it (and at them) the wrong way.
Recently one of my very brilliant writer friends, Jill — (may I call you friend? because that would be an honor since you’re one of the freakin’ funniest, smartest mom bloggers on the internet) — directed my attention to an article written by a doctor about the TV show “Parenthood” and the ability (or inability, as he saw it) of people with autism to empathize with others. His quote:
“Trying to teach a person with autism to empathize is like trying to teach a pig to sing– it wastes your time and it annoys the pig.”
was what began a whole hullaballoo of angry, outraged comments from parents like me about our children and this idiot doctor and how dare someone say…. etc. etc.
First off, let me just tell you that I personally love the “never try to teach a pig to sing” quote. My Dad found it when I was a teenager and loved it so much I think he has a placard somewhere on his desk saying just that. He thought it was funny because he could picture this very annoyed pig …
(…. although, come to think of it… how exactly can you tell by a pig’s expression that they are annoyed? … but more on that later)
this pig who was having none of someone’s well-meaning choral instruction. He used to quote it in a mock serious tone whenever someone in our family would encounter a ridiculous situation that could have been upsetting. That quote and my Mom’s line:
“There you go, trying to use logic again…”
in the same circumstances make me crack up every time. So poo on you, Dr. Author of this ridiculous article for using what is in fact an awesome quote in pursuit of your illogical argument!
But I digress…
So what’s really wrong with this article and the ideas we have about autism and empathy?
(and yes I will state it that way because I’m the Mom, that’s why– see my six-word memoir)
— is that kids and adults with autism already have empathy.
What well-meaning educators are trying to “teach” is how to translate their words and actions for the rest of society who remain too close-minded to see the depths of empathy and compassion that already exist in each person.
Come on folks, open your minds. Everyone expresses things differently. When are we gonna realize this? What do you think people with autism are capable of? Do you think they’re intelligent? If you have children on the autism spectrum or if you love or work with folks on the spectrum, I’m betting that question just made you sit up a little straighter in your chair and say, “Of course I do!” Well exactly how intelligent are they? How capable? Who falls into what category? And how do you know that’s true?
Have you watched “Wretches and Jabberers” yet? Come on, people, it’s on Netflix now for crying out loud! This is important stuff!
As you watch the men in that movie travel across the world educating people about autism and intelligence, ask yourself what changes for you when you see their ultra-stimmy behavior and the things they struggle with. What are you really thinking when you watch (and hear) the words they type to communicate? Did you expect their language, the thoughts they project to be so poetic?
Is there natural empathy there? Or did they learn it?
Pay close attention to what the characters in “Wretches and Jabberers” say about their own experiences growing up. Look and listen *between the words* for what they are able to communicate to the rest of the world, what they wish for, and what still gets stuck while they are “living in a body they don’t have complete control over.”
As I read through the article Jill posted, and as I perused the comments, I thought about how much I fight to get the rest of the world to understand my children. I just wrote a whole post about advocacy and I am proud to advocate in the best way I know for my family for the rest of my life. But I also thought:
“I’m tired of trying to get the rest of the world to understand something so basic as who is my son and what is his true potential.”
none of us reading, none of the self-proclaimed experts who write articles like the Dr. Singing Pig guy, none of the most well-meaning and loving people in our lives–
can ever truly know another’s potential or what is going on inside them. We have to take a leap of faith.
How do I know that children with autism feel empathy?
Because I don’t look for signs of it in the ways that everyone else does. I see it in the way Alex leans on me even when he doesn’t want to be hugged. I see it in the way he responds to other children struggling or expressing what he concludes is pain (screaming or crying or subtle ways of acting out). I see it in the way the kids at the residential treatment facility interact with me differently because they know I don’t judge them or make assumptions about them. I see it in the spaces in between every other interaction. It is so obvious to me that I really have trouble understanding why everyone in this whole world isn’t able to pick up on it. It annoys me more than anything else and frankly, I’m tired of screaming about it.
My response to the comments on the “Parenthood” and empathy article:
“Yes. Exactly. My pigs LOVE to sing… “
If you don’t believe me, open your mind to the possibilities, assume the things that society tells you are “missing” in a person with autism are really there, only they may not be expressed in ways you expect or easily understand.
desire and resiliency,
go tell the rest of the world to stop trying to educate and change the pigs and just listen to them sing.
24 Oct 2012 2 Comments
Watch all the way through to the hug at the end and you will feel inspired.
11 Oct 2012 3 Comments
When did advocacy in special education become such a battle? Where exactly did we lose the forest for the trees and start fighting each other over what all of our children (whether they are “special” or “typical”) really need? Today I read a beautiful comment by a friend and special needs advocate in response to an article in Philadelphia Magazine titled: “Where All the Children Are Above Average.” The article, which touched on special education challenges many families and school districts face, totally missed the mark when it came to accurately portraying special needs parents. And my friend Rachel told them so.
Usually I stay away from hot topics– as you, my faithful tribe of readers, well know. I avoid them because I’m not about dissecting the points of view or fighting the political battles. Sure, I have my opinions. I argue with the skill of a seasoned attorney when the situation calls for it. And I’ve been known to hire seasoned attorneys to do the arguing for me when the battle becomes too emotional or energy-draining for me to handle on my own. But the Philly Mag article invoked a different feeling for me. Although I’m not always particularly happy with the current state of our own family’s special needs battles, today I’m not drained, I’m not angry. I don’t feel entitled to any more than anyone else may be– and indeed I never have felt that way. Today I’m simply curious.
How exactly did we get to the point where some parent advocates get private horseback riding lessons for their autistic children, while other parents get lost in the system and get nothing? And more importantly, what can be done to bridge the gaps and bring us forward (not back) to a win-win-win solution so that all kids get what’s fair and appropriate to give them a good shot at a healthy, happy life as contributing members of a peaceful society working toward common goals for the good of everyone?
(Please note: Not knocking equine therapy here, I think it’s a great tool and helpful for many kids– just trying to illustrate how far apart two families with supposedly equal access to resources can sometimes end up.)
Seriously, people. It’s not about my motherly wish to give my precious child everything up-to-the-moon and back. I don’t want the latest and greatest “cure” for autism. I don’t want whatever is next in line touted as the new “miracle” therapy (underwater horseback riding? seahorse therapy? … there’s a thought…) What I do want is a chance for both of my children to get the basics and what’s fair and appropriate under the current systems we have. And I want to keep dialoguing and opening up communication between parents and experts and teachers and society-at-large in the hopes that new ideas will spark and we will all become a bit more solution-focused and creative for the sake of our children who will shape the future.
I advocate because I did not make my children who they are. They were given to me. The universe blessed me with two amazing individual people who will grow up to have completely different lives, choices, opportunities and experiences. Alex (with autism) will have obstacles that Hannah (who is typical) will not have. And vice versa. As another of my inspiring mom friends said once:
“The real challenge is to raise the children we’ve been given. Not the kids we expected to have. Not the kids we wanted. Not the kids we were, or our parents were, or society expects them to be. But the actual children who are here.”
I am as encouraged and enthusiastic when Hannah’s teacher says:
“She is struggling with xyz subject right now.”
as I am when her teacher says:
“Hannah excels at this-or-that.”
because through that feedback I learn another characteristic of the ever-growing entity with limitless potential that is my daughter. Whether or not Hannah has mastered a particular skill or is behind or ahead of her peers academically doesn’t matter to me as much as making sure she knows I believe in her, she has all she needs inside her, and no matter what challenges she may face in her life, there will be some way she will get through them.
Should I care if Hannah gets into the best college one day, or goes on to become a successful fill-in-the-blank– entrepreneur? doctor? teacher? advocate? Probably. But I don’t. It’s just not as important as making sure she believes in herself and keeps trying. I advocate for her in school because I want her to have the same opportunities her peers have to learn and grow. With each chance Hannah has to learn a skill, with each discovery her teachers (and her parents) make about her inner workings, how she learns and what motivates her, she moves one step further towards making the world a better place because she will be able to combine her faith, her passion and her persistence to contribute something positive.
I advocate for Alex in the same way. Just because he communicates differently from his sister does not make him less intelligent or less able. With each experience he has, with each piece of his puzzle I learn, he too moves forward to fulfilling his ultimate potential in the world. (Please see the movie “Wretches & Jabberers” okay?)
I remember a day long ago when I “woke up” to the fact that the world will view my two children– who have the same biology, the same environment and the same family structure– very differently. All of us were at the playground. Alex was silently going through a “circuit” he had created, a ritual way of playing which involved climbing up one slide, going down another, running to the steps, across the bridge and down again. He was absorbed in his repetitive cycle and happily moving through it.
Hannah was tiny and unusually verbose, chattering away using words far beyond typical two-year old capacity, talking to another child near the climbing wall. The other child’s mother approached me and smiled at their interactions. Then she said:
“Oh my gosh, your daughter is so intelligent. Listen to her talk! You must be so proud.”
I actually didn’t respond at first. I felt a bit confused by her comment, then curious and defensive as her compliment sunk in. She didn’t know either of my kids. But her assumptions were based on what she could see and hear– my daughter’s ability to express herself with spoken words. The realization struck me profoundly that in order to help both of my children live healthy balanced lives, I was going to have to advocate for each of them in different ways.
Because it wasn’t about teaching the rest of the world that Alex can understand and think the words, or that Hannah had the ability to create complex patterns and remember them as her brother could. It was about making sure their inside potential didn’t get lost or run over or negated before they were big enough and brave enough and well-equipped enough to shout it to the world themselves.
Parent advocates are generally not selfish or entitled or asking for or expecting too much. They don’t talk about their kids or make requests or push for resources because they are anxious or greedy. They simply are doing their best to raise the kids who were given to them.
That’s important to all of us. Because doing our best in good faith allows us to build better communities together. As my advocate friend Rachel wrote in her letter to the editor of Philadelphia Magazine:
“Usually what is good for the individual child is also good for the group.”
Parents of children with special needs advocate because we have no other choice. These are the tasks we’ve been given, the children with whose care we are entrusted. None of the parents I know would change their children, but all would remove the obstacles their children face in order to give them the opportunity for a healthy, productive life.
Aren’t health, productivity and contentment key ingredients for a functional, peaceful society? When will the day come when we don’t have to fight against each other or the institutions, but we can all work together to create the win-win-win for all of our children?
I will speak up for my children until they are big enough and brave enough and well-equipped enough to advocate for their own opportunities in the world. Because one puzzle piece at a time, one chance at a time… one kid at a time who creates a new way to help, who finds a solution yet undiscovered, who inspires a positive change… that is the only way the world is going to get better for everyone.