The Single Hardest Thing About Homeschooling

As you can probably imagine, there are many things that are hard about homeschooling. But they haven’t been the things I expected them to be before I started.

At first, I thought the hardest part would be making the decision to do it. That is so often the hardest part about anything, isn’t it? But once the decision is made, the rest seems to fall into place, as if the very idea of change was what was providing resistance in the first place. But, it was not a terribly hard decision. Cheeks was deeply unhappy in public school and growing more so every day, so naturally we had to choose to change that.

Then, I thought the hard part would be figuring out what to teach him. I guess that was a little hard, because I had to choose from a lot of options. There are literally hundreds of homeschool curriculum packages, and too many good books and other tools to count. I certainly wasn’t left trying to figure it out for myself. Once I realized that anything he learned would be more than he was learning while in school, it became much easier. I could pretty much start anywhere and allow ourselves to follow his curiosity. And the benefit would be better than just learning, it would be giving him the chance to love learning.

 

IMG_7717

Cheeks getting “socialization” at the school bus stop he used for six years. You can probably see why I’m not too concerned about finding a homeschool substitute for this.

One of the hardest parts has definitely been the reactions I get from others. All of a sudden, everyone seems to be fixated on his socialization. It’s all I hear about from strangers and acquaintances when they first hear that we homeschool. I suspect these people who are so concerned have likely never bothered to reach out to a disabled person to be their friend, or gone into a self-contained classroom to see how much socialization disabled students in the public school setting are getting there (read more about that here). You would think that after all these years as an autism parent, I would have grown a thicker skin to the advice and judgments of strangers, but that’s only true to a degree. Long ago, I stopped being invested in their stares and comments, but you never get over it all the way. Nobody wants to be the odd one out. (Note to all: Please do not ask a homeschooling family about how their child is getting socialization. Just don’t. The question is inherently condescending. Thankfully, this question doesn’t come from my friends, but from casual onlookers.)

But the single hardest thing is the only one that surprised me. If you’ve read this far, maybe you see the common thread in the examples above: it all comes down to what the school system wouldn’t or couldn’t do to teach him. I am a lifelong fan of public schools and the teachers in them. My mother was a teacher, and I received an excellent education in public schools. But this homeschooling experience and Cheeks’ spelling to communicate has really broken my faith in the public school system for all but the most mainstream, typical learners.

As a taxpayer, I agree that the school system shouldn’t immediately embrace every new methodology that a parent has decided to try. They are already a system of infinite need and limited means, and there isn’t money or space for every unproven idea. But as a parent, I was shocked that the administration wouldn’t even observe a session. That tells me that they are more interested in adhering to their system, regardless of whether it might be failing him. And the only way to tell themselves that they weren’t failing him was to put the burden on him and assume the problem was because he couldn’t learn.  These people, who at one time I truly believed wanted the best for him, didn’t want to even see what he could do if it didn’t already fit their expectations. Cheeks’ classroom teacher was even told he was not allowed to hold on to a book I had loaned him, and was told to turn it over to a supervisor until I asked for it back. The school district banned a teacher from having a book about education. Let’s just sit with that one for a moment, shall we?

 

Screen Shot 2017-09-11 at 12.59.03 PMThe implications of this revelation have been enormous for me. I’m sad that Cheeks’ good teachers — of which there were several — have been denied seeing the daily “lightbulb” moments he has. Witnessing those moments are why many teachers enter the profession! I’m offended that anyone is able to dismiss Cheeks as unworthy of a true education; or who dangerously assumed him to have a cognitive disability (which is not part of any autism diagnosis) based on his inability to speak or maintain motor control. Because make no mistake, that is exactly what they were doing when they refused to make room for possibilities. And I’m now also questioning the advice I get for Cheeks’ older, neurotypical brother, because I’ve seen how the system can be so far off the mark. And to think, this entire system exists to teach our kids new things. The level of contradiction between their words and their actions is stunning.

It’s hard to change everything you once believed to be true. I’ve been faced with it more than once, so I empathize with the challenge I’m placing before the school system. Where I draw the line is their refusing to try. They wouldn’t even open their mind to the possibility that Cheeks could do what he was doing, and while my head can understand the challenge they faced, my heart can’t accept the result.

Mark my words: ten years from now, the people and systems that refused to presume competence in their students will be on the wrong side of history. When that happens, I will not be sympathetic toward the ones that had opportunities to do better but refused them.

 

 

 

 

A Word on Words

The words we choose create understanding, and in turn they build connections and lead to community. They are most people’s primary means of interacting with others in the world.

I’m a word nerd. I love language and the ways that different words can be used to convey precise meanings. I try to choose my words carefully and to remember that they represent me, my character, and my intellect.

For those reasons, I am changing some of the terminology I will use to describe Cheeks, his autism, and other autistics like him. It doesn’t come from a need to be politically correct, it’s about being both accurate and respectful in the way I use my words.

I will not say that Cheeks has “special needs.” Instead, I will say he is disabled. His needs are no different than anyone else’s needs. He has a need to be loved, educated, and understood. Nothing about that is special, it makes him exactly like everyone else. Describing him as having special needs is suggesting that his needs are outside the norm. He does however, have a communication, sensory and motor planning disability that requires support in order for him to fully access the world around him.

Perhaps just as importantly, having “special needs” does not provide him with any of the legal protections he may require in his lifetime. Being “disabled” does.

I will not say he, or any other autistic, is “nonverbal.” Instead, I will say he is unreliably speaking, while others may be nonspeaking or minimally speaking. The word “nonverbal” means to be without words. If Cheeks or anyone else is described as nonverbal, that means he has no capability of understanding language. Let’s say you had laryngitis and suddenly couldn’t speak. Does that mean you no longer understand when someone talks to you? Of course it doesn’t.

That’s because the part of the brain that controls speech production (Broca’s area) and the part of the brain that allows us to comprehend speech (Wernicke’s area) are separate, and represent two completely different neural functions. They aren’t even the same type of function, one is motor and the other is cognitive. Calling someone “nonverbal” because they can’t speak is both incorrect and derogatory. Remember when we called people who could neither hear nor speak “deaf and dumb?” That’s similar to saying nonverbal.

I will not say his autism is low- or high-functioning, or describe his autism with words such as severe, aggressive, or disruptive. Instead, I will discuss him only as the complex, multifaceted individual that he is, and I will use respectful language.

I’ve written more about high- and low-functioning here. It reduces a complex individual to a summation of how well they meet an arbitrary standard of normalcy. Even being placed at the perceived high end of that yardstick still means you are being publicly offered up for the world to assign a label to your capabilities.

There is also nothing about the adjectives above that someone would want used to describe their personality. Better to use the terms significant, complex, notable, compelling, meaningful, etc. The word used should be one that doesn’t insult him.

I will not call him “a person with autism”, I will say he is autistic. (For now.) This is another one I have discussed before, you can read that here. Some segments of the disability community do prefer person-first language, while others prefer identity-first. Mostly, the autism community leans toward identity-first, or “autistic person.” But any community is comprised of individuals with differing opinions, and so it’s not a universal preference. Ask, if you can, what someone prefers. One day, when Cheeks has more open communication, I will explain the difference to him and ask what he prefers.

And lastly, I will not condemn those who use the words that I won’t (mostly). It’s not my goal to tell anyone they are wrong with the words they choose. I’ve used all of these terms at one time or another, some recently. My goal is and has always been to educate, and to represent Cheeks in the world as accurately as possible. I say “mostly”, because Mama Bear sometimes shows up when Baby Bear is being inadvertently disparaged.

Language paints a picture, and it’s important to me that his picture is true and authentic. For now, I am both his advocate and his voice; so I have to get it right even more for his sake than for my own. And I believe that as the accepted language changes, so will the world’s perception of our autistic friends and family members.

 

 

 

Sh*t People Say, Homeschool Edition

Want to see an awkward moment? Tell someone you’re homeschooling. Usually the response is a polite smile and nod, sometimes with wide eyes or a raised eyebrow. When questions do come up, this is what they have been:

“Why?”

It was never something I wanted to do, but the gap between Cheeks’ abilities and the education he was getting at school had become too wide. I advocated within the system for years to correct that, knowing that he was surrounded by people who wanted to see him succeed. But there was no getting around the fact that the system measured his success by teaching him to behave and learn the way other students do. I don’t think that will ever happen. And even if it did, at best we were looking at a lot of time, effort and emotion to get there. The likely result would be him aging out of school before getting the chance to learn all that his peer group did.

“How has it been going?”

For me, it’s like having a newborn baby again. I’m isolated, overwhelmed, exhausted and confused. But I’m also discovering a whole new relationship, I’m giving him something only I can give him, and there are many moments of immense gratitude. Cheeks is happier than he has ever been, and focused on learning instead of compliance.

“How do you know what to teach?”

There are many curriculum packages available to the general public, and numerous web-based educational resources. But for now, I’m not using a curriculum guide. I want Cheeks to enjoy the process of learning again, so I’m temporarily allowing his curiosity to take the lead. All I have to do (for now) is offer a variety of topics and see what captures his interest. I have confidence that anything he learns during this adjustment period is more than he would have in school. I’m researching curriculum packages and plan to start using one at the end of summer.

I’m not under the illusion that it’s easy to acquire the skills of a trained educator, but I also don’t have to learn how to teach all kids – I only have to learn how to teach mine.

“Did something happen that made you take him out mid-year?”

Yes, but it wasn’t a one big thing. It was several small things.

First, I tried to show Cheeks’ IEP team what he can do when provided with the right academic tools. I brought them videos, books and news articles regarding his method of spelling to communicate. There was some interest in learning more, but not much. The district-based administrator on his team wouldn’t even take a copy of one of the articles I brought, much less read it.

I also offered a demonstration of how Cheeks spells; provided by Cheeks’ and his therapist, and done at our expense. I was flatly denied, and told that such demonstrations are considered training and therefore are not allowed. Privately, I offered his teacher to come see it unofficially and on our own time. That was months ago and the invitation has not yet been accepted.

The last straw came from a behavior therapist on the IEP team. I had often reminded the group to interact with Cheeks in an age appropriate manner, and presume his competence to understand. When we got to the part of our meeting where we would discuss how to reinforce his preferred behavior, one of the team members described a suggested example of what that might look like. She said in a sing-song voice, “Yay! You had quiet hands, buddy! Good job! High five!” Once again, I kindly reminded her that he is on the back half of 11 years old. Did she think maybe he knows her expectations of him are low when she speaks to him like that? She replied, “I talk to all the kids in his classroom that way.” The fact that I didn’t face palm right then and there is a testament to my self-control.

Regarding the middle of the school year, Cheeks’ educational programming is largely dependent on his IEP dates. Those occurred at least once annually, sometimes more often, but were not scheduled relative to a school year; rather, they were planned based on the elapsed time since the previous meeting. We had just finished his most recent IEP cycle when the decision was made. Being in the middle of the school year suggests that we take into consideration things such as grade-level curriculum, field trips, project-based learning, standardized testing, etc. When you have a student who is not included in these elements of a typical school year, then “mid year” becomes an arbitrary guideline to follow.

In short: it was because when you finally figure out what you’re supposed to do, you want that to start right away.

“Will he get socialization opportunities?”

This question presumes that Cheeks was getting socialization at school in the first place.

He was in a self-contained autism classroom with two other students, who were also nonspeaking. The playground where he spent his recess was the fenced-in one reserved for special education and kindergarten classes, not the one where the other fifth graders were. He had an assigned table in the cafeteria at lunchtime, which he shared with only his nonspeaking classmates and two adults. If there was an assembly, he sat in a chair at the back with his teacher, not on the floor with other students, in case he made noise or movements that could disrupt others. He usually sat alone on the bus to and from school, and no one has ever invited him to a birthday party or play date. He did have some times during a typical week when he was included along with other classes, but it wasn’t much and it was not social time. So I’m not too concerned about taking all that away.

At home, he’ll get facilitated activities, outings with other homeschoolers, or even just trips to the community pool. That’s already more than he got in school.

“I could never do that.” 

I think when people say this, it’s code for a mixture of respect for my choice and an underlying suspicion that I’ve lost my marbles. I used to think the same thing about homeschooling. I didn’t want to have to do this. I never aspired to it, or believed myself called to it. In fact, I fought it as hard as I could. But if, like me, you were also faced with no other good choices… you would figure it out, too. I’m glad you don’t have to.

That about covers what I have heard so far. If you’re thinking something and I’ve left it out, feel free to ask. I promise not to make it awkward.

 

Keeping It Real

Something that has always been very important to me as I walk this path of parenting a child with autism is that I want to be authentic about what we experience. That means being willing to sometimes tell the hard stories, because the hard stories are still our stories, and there is no shame in them. Shedding light on the experience without embarrassment is part of acceptance. If I am going to ask for acceptance from others, I have to require it of myself.

But Cheeks’ communication difficulties means that he can’t always tell me what’s OK with him to share. I always tell him what I’m writing about, because I know he understands me. But we can’t have long, thoughtful conversations about what it means to have an internet presence, or whether he feels comfortable with people knowing some of his behavior. I can only assume that an 11 year old boy would want his mom to edit herself carefully about what she writes on a blog like this. Being respectful of him is one of the highest values I hold.

Unfortunately those two priorities are sometimes in direct opposition to one another. I want to share our difficulties, of which there are many, but I also want to protect my son’s privacy. In those moments, protecting my son wins. Every time.

Because of that, as you read this blog, you may sometimes be left with the impression that living with autism is easier than it is; filled with victories and discoveries, and peppered with amusingly awkward social situations. It can often be those things.

It can also be indescribably stressful. One study done by the National Institutes of Health measured cortisol levels of autism mothers, and found it to be present in levels comparable to that of combat soldiers, holocaust survivors, and parents of kids diagnosed with cancer. (Cortisol is a hormone released in the brain during acutely stressful events.) At any given time, autism parents may be thinking about our child’s self-injurious behavior (estimated to occur in 50% of individuals with autism), elopement (~54% of people with autism), interaction with law enforcement, seizures (possibly as high as 38% of people with autism), inappropriate trust of strangers, lack of personal safety awareness, inability to verbally communicate a name or phone number if lost, bullying (3x more common against autistic kids than their neurotypical peers), and more. Don’t even get me started on the many ways we have to fight for our kids to simply be offered the same opportunities in schools and communities as their typical peers, and the judgmental stares and comments from strangers about what they observe in us.

Screen Shot 2017-06-03 at 3.09.00 PMI’m not complaining, because I love Cheeks more than anything, and autism is part of who he is. But I am explaining that what you see here is not the whole picture, and with good reason. When the day comes that Cheeks has a fluency level to communicate his own story, I will help him with that any way I can.

For now, think of us as an iceberg, and I’m only able to show you the part that sticks out above the water. I hope you understand why that is, and that you always know there is more to our story. For us, “keeping it real” doesn’t mean full disclosure, it means remaining true to our values.

Cheeks and I still welcome your questions about him, our family, or our experience with autism. Even if we choose not to be completely transparent in our answer, we’d rather you ask than wonder.

 

 

Let’s See Who You REALLY Are…

I have recently started homeschooling Cheeks. The main reason for this is that the public school system refused to accommodate Cheeks’ spelling to communicate, because it is not yet an evidence-based academic methodology. This created numerous disparities in what they believed to true about his cognitive ability; and in turn, how they taught him.

We know that Cheeks is intellectually competent to be just what he is, 11 years old and learning at a 5th grade level. In school, he was being taught at approximately the 1st or 2nd grade level based primarily on his inability to speak or write correct answers. His most recent work samples sent home last month had him writing the words hot-pot-robot; answering reading comprehension questions from a three sentence paragraph; and doing two-digit addition and subtraction.

In our lessons at home, we are jumping in at a 5th grade level in most subjects. Core subjects such as history, science, and language arts can all be taught starting with any topic; and presenting the lesson at a 5th grade level of complexity. As it turns out, Cheeks loves to spell long, challenging words: his recent vocabulary in home lessons has included “hieroglyphics”, “archaeologist”, “xylem”, and “anesthesia”, among others. (Note: I was a state-level spelling champion in sixth grade, but spell check had to correct two of those words for me as I typed this post. He got them right on the first try.)

The exception in terms of the difficulty level I present to him is math, because the concepts build on one another as you progress through the subject. If you’ve never had 3rd grade math, you can’t really jump in at 5th grade. So for that area alone, I was preparing to teach at a more basic level. I spent the last three weeks researching methods to teach math facts in a fun way: one that would allow him to learn what he needs to know but did not teach it in a way that would talk down to a 5th grader, who in ordinary circumstances would have learned them much earlier. I bought and borrowed books, read lesson plans, and studied everything I could find.

Screen Shot 2017-05-20 at 2.27.07 PM
Me, planning to teach Cheeks’ his multiplication facts.

Two nights ago at bedtime, on a whim, I decided to ask Cheeks if he already knows his times tables. He answered yes. I was surprised, but his speech can often be unreliable, and he says things that are not what he means to say. So I didn’t know if his answer was intentional. The next morning I still had all my books and lessons ready to go, and we sat down to start learning multiplication.

I warmed up his motor skills by giving him some of his beloved long words: “multiplication,” “accelerated addition,” and “mathematical.” I switch to the number board and this followed:

Me:  What’s 4×4?
Cheeks:  (body language reflecting total confidence)  [points to 1, then 6 on the board]
Me: (thinks to self “What the…? Must have been an easy one for him.”)  OK, what’s 7×5?
Cheeks: [points to 3, then 5]
Me:  (???????)  What’s 9×9?!
Cheeks: (looks at me as if I have three heads)  [points to 8, then 1]
Me:  ~laughs like a giddy little girl~
Cheeks: Can I be all done now?
Me: (still giggling)  Yes buddy, you can be all done. You’ve earned the day off. I’m sorry I didn’t understand when you said you already knew all this.

Screen Shot 2017-05-20 at 2.25.02 PM
Me, after realizing I didn’t have to teach him.

It felt a little like that moment in the Scooby Doo cartoons when the characters say, “Let’s see who you REALLY are” before pulling off the ghost’s mask to find Old Man Jenkins up to a nefarious scheme.

I have never been so happy about the massive waste of my time all that lesson planning turned out to be. And I shouldn’t have been surprised by this. I am being reminded every day of how much he does know, and after all, he told me he knew this too. I just thought since it had never been expressly taught to him, how could he know it? There should be a name for how a person feels when they are both surprised but not surprised. Maybe I will ask Cheeks what that word is, he’s clearly more likely to know it than I am.

In the meantime, I caution those reading this to assume that he’s extra-smart in math simply because he’s autistic. Maybe he is, or maybe he’s not. That assumption is based on stereotypes that have actually inhibited our understanding of him until now, so let’s reject those. Better to presume his competence, provide his tools, and then get out of his way while he shows us who he is.

Come to think of it, that’s pretty much what all parents and teachers should do for their kids, autism or not. Imagine that.

Screen Shot 2017-05-20 at 2.35.06 PM

‘Tis the Season

A story came across my timeline on Facebook this morning about Toys R Us stores in the United Kingdom* planning a “quiet hour” of shopping for individuals on the autism spectrum (see the original story here). I expect that we’ll see more stories like this each holiday season, beginning with the stories I have already seen about Halloween accommodations and continuing through the annual autism-friendly Santa visits. I am both thrilled and frustrated by the growth of these events.

You’re probably wondering why I would feel any frustration over what is obviously a well-meaning plan for inclusion, and part of me would agree with you. I believe that any effort which involves adapting to others’ differences and allowing them to have the same experiences as their neurotypical peers is a good thing. Every story like this raises awareness of the needs of some of our population. Notice however, that I am not saying it necessarily serves the needs of the autism population.

For some, it does; but not for all. It has been said that if you’ve met one person with autism, you’ve met one person with autism. Making the connection between sensory needs and autism, while understandable, is also reductive. For example, Cheeks is hypo sensory in some aspects and hyper in others (hypo sensory being under sensitive to stimuli and therefore one seeks sensory input, hyper sensory being overly sensitive and one avoids it). Creating an environment for him such as the one described in this article would be both a hit and a miss.

The larger issue, in my opinion, is making any assumptions about the needs of someone with autism. It’s true that there are diagnostic criteria for autism, and so a certain set of expectations about the needs of these individuals is fair enough. But it’s worth considering too, that there are many people with sensory needs who are not on the autism spectrum, who would be well served by this offering but don’t read further than the word autism in the title.

quotescover-jpg-30Much like not everyone with a physical disability needs a ramp, not everyone with autism needs low lighting and quiet. It’s incumbent on a host such as Toys R Us and others to make the offer, but then to allow the potential audience to self-identify whether it meets their need. Calling it an autism event sets it aside as different and separate, which is the opposite of inclusion.

True inclusion will come when we see the diversity of any population and address varying needs, rather than labeling it and by so doing, inadvertently demonstrating a limited understanding of the need. When those within the autism community create an event such as this, it’s called “sensory friendly”, not specifically for autism. Sensory friendly is created to address both hyper sensory and hypo sensory elements.

I truly applaud the people and organizations that show a heightened awareness of neurological diversity. I will also continue to advocate until this is the rule rather than the exception. Toys R Us and others are making great first steps.

* This event is currently only planned in the U.K., Toys R Us has not yet committed to doing anything similar in the United States or elsewhere.

It’s All Just Autism

Screen Shot 2016-04-12 at 11.00.38 AM
This is the spectrum people may picture as a metaphor for autism.

You’ve heard that autism is a spectrum disorder. And by that, you probably pictured it in the way a spectrum of light is often displayed, much like that image to the right. It’s linear, with levels of severity that range from one end (high-functioning) to the other (low-functioning), and it has infinite points in between that all qualify as an autism diagnosis. The objective in this metaphor is to convey that there is a vast array of symptoms that the autism spectrum can exhibit, but they all exist somewhere along a defined trajectory leading from better to worse.

This kind of thinking is incorrect, and I’d like to stop using it. 

Screen Shot 2016-04-12 at 11.01.47 AM
This is what an autism spectrum should look like.

The autism spectrum is not a bar or a line; it’s circular, like that image to the left. It still shows infinite variety, but there is no higher or lower point, no suggestion of less or more, no beginning or ending.

Why does this matter? Because there isn’t really any high- or low-functioning autism (you can read more about that here.)  I believe that using the terms high- or low-functioning is damaging to the community because it conveys assumptions about abilities and inabilities.

Simply stated: “high functioning” disregards the very real challenges an autistic person faces daily. “Low functioning” diminishes the value of that person’s skills and sets low expectations for their achievement.

I’ve noticed that some parents are quick to say their child is “high functioning.” It sounds to me as if they are saying that while their child may be autistic, it’s only “high-functioning” and therefore not like other cases. On the other hand, I have personally heard very few parents describe their kids as “low functioning.” My theory is that while there are definitely more severe cases of autism than others, these latter parents realize the pejorative nature of the term low. And if there shouldn’t be a low, there can’t be a high.

Conversely, I have heard many parents comfortably say “severe autism” but few that say “mild autism.” There is nothing about autism that feels mild, no matter where your child is on the spectrum. That disparity alone should demonstrate why we need to stop using the terms high and low. The difference lies in the use of words that can be viewed as flattering (high) vs. disparaging (low). Our goal is to describe our child, not place him or her on a scale of valuation.

To those that will say the terms high- and low-functioning do help the world to understand a specific case of autism better, I simply have to disagree. Additionally descriptive terminology is helpful only when it adds necessary or clarifying information to the discussion. For example, if I tell a waiter I want to order a steak, it’s both helpful and clarifying for me to offer that I want it cooked medium. That information carries with it a defined and common understanding. But saying high- or low-functioning doesn’t have a diagnostic criteria and therefore carries a different interpretation to anyone who uses it. It’s the equivalent of me telling that waiter I want the steak the way they make it in September. What does that mean? Exactly.

I understand that it’s hard to describe the nuances and complexities of autism, and so we prefer shortcut terms in casual conversation. But taking those shortcuts detract us from the objective of helping people outside the autism community to better understand those of us within it.

The unique neurology of an autistic person can’t be reduced to a two-word label. Certainly the intent behind using the term “spectrum” is specifically for that reason. It’s all autism. Let’s work on helping the world accurately understand what that means, rather than drawing lines in between it and taking up residence on our own side.

 

 

Why I Reject Autism “Awareness”

Each year, the month of April has been designated as National Autism Awareness Month, and the date of April 2nd is World Autism Awareness Day. These events have been brought into being by various autism support organizations, such as the Autism Society of America; and they aim to promote awareness, inclusion, and self-determination for autistic people.

I’m preparing now for my social media feeds to fill up with messages exclaiming support by wearing ribbons, installing blue light bulbs, and telling feel-good stories about instances where a neurotypical person or group found a way to include someone with autism in their world.

I appreciate the inteScreen Shot 2016-03-29 at 12.44.12 PMntion these people have when they declare their appreciation. I know they mean well. But each year I grow increasingly uncomfortable with the disconnect between these messages and the true understanding of what it means to have autism in one’s life, whether that is yourself or someone you love.

First, the whole “Light it Up Blue” campaign by Autism Speaks is a branding campaign aimed at serving that organization, and not a cooperative effort at true understanding. Autism Speaks has spent multimillions of dollars to identify the needs of the autism community such as the lack of inclusion, the financial impact, and safety issues. But they spend nothing on direct support to the community. The say offensive things about autism (For example, “These families are not living. Merely existing.” – Suzanne Wright, co-founder of Autism Speaks). I appreciate their legislative advocacy work and the role they play in funding research; they also have some good tools on their website for identifying resources and understanding the diagnosis. But many autistic individuals have trouble identifying with Autism Speaks’ mission because of their funding choices and their focus on neurological “deficits”, “cures”, and the “global health crisis” that is autism, suggesting a lack of acceptance on their part of the community of autism.  Out of respect to those with autism who feel that Autism Speaks does not speak for them, I choose not to “Light It Up Blue”.

Next, let’s discuss the feel-good stories. You know the ones… maybe the popular high school girl invites her autistic classmate to the prom (here’s one of those stories, and here’s another, and this one from a few years ago; and here’s one about homecoming, it’s evidently pretty trendy to do this). I also see stories about autistic teens being allowed to play in their first organized sport—usually the last game of the season, or the last few minutes of a game when the outcome is already clear—and to everyone’s surprise or as a result of their collusion, they score (read some of these stories here or here). These tales, while enjoyable to read, are also patronizing. They are only news because of the assumed inability for autistic individuals to access their world fully without neurotypical peers making exceptions to their usual choices.

Here’s the reality of autism. In the last year alone, my experiences parenting a child with autism have included the following:  Sitting on the floor in Target for almost an hour while Cheeks screamed, punched, and banged his head out of frustration and anxiety; and only one person in that time asked me if I needed help (it was not a staff member), although probably a dozen people entered the aisle and walked away in avoidance. Spending thousands of uninsured dollars on therapy, tutoring, and legal support to provide Cheeks with the same opportunities as his peer group. Studying special education law and individualized education plans for hours upon hours in order to provide Cheeks with the “Free Appropriate Public Education” (FAPE) guaranteed to him under Federal law, but which is not easily obtained without constant vigilance. And in recent weeks, I am investigating why Cheeks has not been invited to participate in field trips and other educational school activities offered to the rest of his grade level, which is leading to increasing isolation and self-containment in his school environment.

Awareness should have been established by now, so let’s agree that it’s not the right word for April at all. Acceptance and appreciation are the true goal. My wish for those goals is that we stop marginalizing our autistic students, peers, and community members. Stop seeing them as incapable or cognitively impaired. Realize that communication comes in many ways other than verbal, and seek to understand in those ways. Offer empathy rather than sympathy. Realize that their needs may be different from yours, but that a level playing field can be offered. Fair is not when everyone gets the same thing, but when everyone gets what they need.

If you agree with my goals, start by asking an autistic person or their caregiver something about their experiences so that you can begin your journey toward true undersScreen Shot 2016-03-29 at 12.11.40 PMtanding and appreciation. Ask me here, I’ll answer or I’ll ask Cheeks to answer. I promise you that autistic people and their allies are some of the most amazing individuals you will ever meet, because they face an intolerant world on a daily basis and usually keep their humor, hope, and joy of life anyway. A lot could be learned by most people from that, wouldn’t you agree? We welcome all of you into our community in the same way we want to be welcome anywhere. Come join us, we’ll leave the porch light on for you. But it won’t be blue.

Tall Tales of Autism Treatment

Screen Shot 2015-12-10 at 12.21.05 PMIf you’ve been on Facebook more than a year, then you are familiar with the “Memories” feature it has, where you are shown your posts from the same date in previous years. Recently, Facebook showed me an article I posted in 2009 about progress in autism treatments and therapies, and at the time I commented on how helpful it was to read. Cheeks had been diagnosed just a few weeks prior to me posting that article, and I remember how reassuring it was to me about what his future could hold. Read the original article here.

When I reread the article now, I don’t find it encouraging. I find it harmfully misleading. I can see why it gave me so much hope, but that hope was misguided.

The article discusses one family’s story with their diagnosis and treatment using applied behavior analysis, or ABA. ABA is the primary treatment method of choice for most autism cases, because it has the most objective science supporting it’s success. We have done ABA for years with Cheeks. It’s a slow process, but I agree that in the hands of someone skilled, it can bring positive change to some of the most difficult aspects of autism.

The problem that I have with this article is that it describes recovery from an autism diagnosis after just about a year or so of ABA therapy. It’s the kind of story every autism parent wants to hear, but only the seasoned ones know is entirely unrealistic. And it saddens me to think that people are reading things like this and framing their hopes and expectations around it. I know I did, six years ago. (Don’t even get me started on the use of the word “recovery” in the article. Cheeks isn’t sick or injured.)

I don’t know enough about this case to say with certainty, but it’s possible that this child was incorrectly diagnosed based on the speed with which his symptoms were mitigated. And I don’t want to minimize the effort this family made, I’m sure it was significant. But fundamental differences in a person’s neurology can’t usually be so quickly changed. Telling this story without adding that it’s such an exception to the norm does a disservice to the millions of families who struggle daily with helping their kids to achieve an independent adult life of their choosing.

In fact, only a small minority of people diagnosed with autism ever reach the point where they no longer meet the diagnostic criteria, possibly around 7%. And within that group, it’s considered likely that at least some were misdiagnosed.

Everyone loves a heartwarming story and I’m happy that this family achieved a good outcome for their child. But it’s not helpful to tell this story as if it’s what the future might hold for someone new to the diagnosis. In a future post I will tell the story of how and when we knew Cheeks was autistic, and what getting that diagnosis for Cheeks felt like to our family. I completely understand why I loved this article back then. Now, I wish I had been told more realistic stories about what parenting a child with autism would entail. I wouldn’t have liked them nearly as much at the time, but they would have given me valuable insight into facing what was ahead.

Screen Shot 2015-12-10 at 12.28.12 PMRaising an autistic child is not like playing the lottery. I buy lottery tickets knowing that my chances of winning are slim, but I’m willing to spend a small amount of money in exchange for the fantasy I get to live while I wonder what it might be like to win. I don’t want to make decisions about my son’s future using fantasy as my criteria.

What inspires me now is reading about other families who have worked for years, like we have and continue to do, to find their sweet spot between acceptance, adaptation, and achievement. Those are my heroes and they have the outcome I aspire to for Cheeks. I know many of these people and I see myself and Cheeks in them. Our story has been their story, with some changes to the specific details. I know for sure that we can have what they have. What could possibly be more hopeful, or more reassuring, than that?

 

Hope is a Good Thing

The last couple of weeks have been an emotional roller coaster for Cheeks and me. We’ve had a lot of hard moments. I’ve been torn about whether to write about them, because I feel so strongly about treating him Screen Shot 2015-11-20 at 1.00.50 PMwith respect. Sometimes that means protecting his difficult times from public view, as any of us might do for ourselves. On the other hand, it’s also important to me to be authentic about our experiences, and that includes the less attractive sides. There’s no shame in our story, so there’s no need to conceal it. I land on different sides of that argument depending on the circumstances. This time, I have decided to tell the story.

A few months ago we were introduced to a teaching method for students with communication disorders that we have come to believe will be a good fit for Cheeks. It’s a somewhat controversial methodology, mostly because mainstream credibility only comes from having a wealth of data supporting its efficacy, and this program does not yet have that. But as I have written here before, the decision to try something with Cheeks has to be subjected to two questions: 1) Is the risk low enough relative to the potential reward?; and 2) Can we do it in enough isolation that I don’t attribute changes to one intervention that are actually due to another? Having passed those two tests, we decided to try this program. I will write more about that in a future post. It’s not a private matter, just not the topic today.

Early results have been good, Cheeks is responding well to his academics. So well, that he is showing capabilities I have long believed him to have, but that we have been unable to access before now. I can’t overstate how huge this is for both of us. I’m able to see his intelligence, and he’s starting to be challenged at his true level of ability.

But, my mother always said that nothing worth having comes easily. And so it has been true this time as well. Cheeks has been experiencing so much disruption in his psyche that it’s manifesting itself in some pretty extreme behavior. He’s always shown self-injury when he’s upset or anxious, and lately we’ve had an increase in the intense moments that trigger it. Even more concerning is that he has shown some aggression to me during these tantrums – something he has only done a few times before in his life, and never this deliberately. Right now I’m sporting a few battle scars.

IMG_4956
One of our many happy moments.

I’m left with this strange combination of emotion. I am so filled with hope and certainty that we are doing the right thing in starting this program. That certainty has never come to me with any therapeutic decision we have made up until now. It has been absolutely glorious to feel it. But I am also distraught over what ostensibly appears to be regression in his behavior. There really is no pain like watching your child in so much distress that he causes bruising and bloodshed to both himself and someone he loves. I know he doesn’t want to feel that way, and he doesn’t want to hurt me or himself the way he has. I’m constantly wondering when the wrong bystander will see something out of context and his or my security will be threatened on a whole new level. And the process of experiencing all of this at the same time has been emotionally exhausting for me.

Autism isn’t pretty, I already knew that. And my resolve has not been shaken. I know this will end up being a good thing for Cheeks, I just know it deep in my heart. The getting there will challenge us, maybe more than anything has before. It will be hard, for sure. But the only thing harder than that would be not doing it.