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.

 

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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.

 

 

 

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.

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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.

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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.

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It’s All Just Autism

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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. 

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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.

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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.

 

Holiday Gift Giving to Autistic Kids

Screen Shot 2015-11-10 at 9.29.57 PMThe calendar may say early November, but the holidays are around the corner—ready or not, here they come.

At this time of year, those of us with kids in our lives find ourselves wondering what might make a good holiday gift. But a child with a communication disorder such as autism can’t always tell us. Or they may have trouble figuring out that even though we’re asking now, the gift doesn’t come until later. They might struggle to understand why they can’t expect to receive everything they asked for. In some cases, a child with autism may even ask for something that is impossible to deliver. For example, Cheeks once wanted his left thumb placed on the other side of his palm, next to his pinkie. Although I think that was just a Tuesday, not a holiday wish. And no, I still don’t know why.

Having autism doesn’t make kids alike in any way I can predict, so this isn’t a gift guide. But there are definitely some recommendations I can make about the context of your choices.

If the child you want to give a gift to a child that has focused interests (read: obsession), it might seem like the natural place to start. I urge caution. For example, Cheeks is currently very into superheroes, especially Batman. But three months ago, it was Scooby Doo. A few months before that, it was classic cartoons such as Tom & Jerry or Wile E. Coyote. Batman might not be in vogue anymore by December 25th; you might have heard there’s a little Star Wars moving coming out that could be a hit with him and a few other people. His interests are narrow, but deep, and they come in cycles. I can’t predict where we are in the cycle. If you want to choose a gift for any autistic child in your life, please don’t rely on surprises. Ask the parent to tell you outright what would be a good choice.

NO clothes! I can’t stress this enough. Most kids don’t love opening up socks and underwear on Christmas morning anyway. But the sensory challenges presented by autism mean that tags, textures, seams, colors, sizes, sleeve length, and even more are all at risk of being completely wrong. And don’t mean wrong as in, less preferred but still could be worn on laundry day when nothing else is clean. I mean it will be untouchable, not permitted even within potential eyesight of the child. I am not exaggerating. Better to avoid this category altogether.

If you like to give educational gifts, then keep mind what I have said on this blog about presuming competence. However, there are areas of developmental ability in autistic kids that are not in sync with their age. I know Cheeks has all the cognitive ability of his ten-year old peer group, but he does not have a similar communication ability. He comes home with library books from school written for a child in kindergarten, because that’s what his reading level seems like when he expresses himself. And—brace yourself for this shocker—my 4th grader isn’t interested in kindergarten books. On the other hand, he might love a sensory toy that to an outsider looks like something designed for preschoolers, because the sensory experience is calming to him. The point is, you can’t follow age guidelines in the same way as you can with typically developing kids. Talk to someone who knows the child’s abilities. If you want the gift to be a surprise to the parent too (which I don’t recommend, but there may be good reasons), then seek out a teacher, therapist, or other caregiver who knows the child well.

quotescover-JPG-85Lastly, and perhaps most importantly, please let go of the expectation that your gift will be greeted by a face lit up with holiday joy. I know it’s one of the best parts of gift giving, but emotional responses are difficult for autistic kids. It doesn’t mean they don’t feel the joy, it only means they don’t know how to express it. And if the gift misses the mark, you may hear about it in a way that would be considered rude coming from another child. Let it go, and let your real gift be compassion and understanding, and not what’s inside the box.

Presume Competence

One of the most common questions I get about Cheeks is “does he understand____?”, and the answer is that I don’t know for sure. In theory he can talk and explain for himself, but in practice, speech is so difficult for him that he has learned to not depend on being understood. Therefore he often remains quiet when people interact with him. But we live in a highly verbal world, especially within the education system. As such, the measurement tools that are used to identify learning are flawed. Of course, that happens with neurotypical kids, too. So… what does he understand?

I attended an educational session this summer in which a newly minted Ph.D. presented the dissertation paper that earned her the degree. Part of her research depended on demonstrating to neurotypical kids how a child can be a competent learner and yet still be unable to comply with the way a test is presented. To do this, she administered an Australian intelligence test to her American students. (I have no idea if this test is authentic, but it demonstrates the point.)

Einstein
It’s likely that Einstein never said this. But the words are relevant anyway.

Why couldn’t they pass the test? It was presented in their native language and they were given whatever accommodations they needed in order to complete it. Because it was created with a particular audience in mind, and they were not that target audience. The same is true of tests created for a verbally-based educational system when given to non-verbal or semi-verbal students.

When Cheeks’ had his most recent intelligence testing done, he tested as having an IQ of around 70. That score is two standard deviations from the mean, which in layperson’s terms used to mean labels like moron, feeble-minded, or retarded. I am not making this up. The standard disclaimer language that I was presented when told of Cheeks’ score included the warning that his score was unlikely to change much in his lifetime. So that was fun.

But I do not believe it. I know there is a whole world locked in there, waiting to be released. I believe in his abilities not just because I’m his mother, but because I see evidence of it every single day. Have you ever had that dream where you are calling to someone who should be able to hear you, but for whatever reason they can’t? I think that is likely the world Cheeks lives within.

Every day, we are chasing down ways to allow him to be heard. Until then I will speak to him as the 9 year old he is, and presume until proven otherwise that he has the ability to understand. There is nothing wrong with his hearing, and I would be crushed to learn later in his life that he didn’t know why we were always talking down to him.

I understand why people talk to Cheeks as if he is a much younger child. And I appreciate their desire to connect with him. But please, don’t interpret his lack of appropriate responses to mean a corresponding lack of understanding.