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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‘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.

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.

 

Autistic, or Person with Autism?

quotescover-JPG-46I swear to you, this post is not going to be about political correctness. While no one should knowingly be rude to another, I prefer to believe that most of us have the best of intentions at heart in our communications.

On that note, I’d like to discuss whether people who have a diagnosis on the autism spectrum should be called an “autistic person” or a “person with autism”. Most disability advocacy organizations recommend that anyone with a disability should be referred to as a person first, and reference made to the disability second. That’s called “person first” language. There’s a growing contingent within the autism community however, that prefers to be called “autistic person”, or simply “autistic”. That’s called “identity first” language. And it has become a hot button issue for many.

As a writer, I know that even slightly changing the phrasing of words can subtly alter their connotation—even if the words’ literal interpretation means the same thing. And people with differences are so often marginalized in our society, that it’s important to me to refer to them in a way that makes them feel respected. Allow me to explain the difference between person-first language and identity-first language within the autism community:


The Case for Person-First Language

A disability is only part of who a person is, it is not the whole person. Mentioning the disability first is using the disability to define someone, and placing who they are as an individual in a secondary position. A disability is nothing more than a medical diagnosis. You wouldn’t say “cancer person” or “wheelchair person”, you would say “person with cancer”, or “person in a wheelchair”. Mentioning a developmental disability should be handled the same way.


The Case for Identity-First Language

Autism is not something you can separate from the person, it is at the center of who a person is. While there are aspects of it that might be considered disabling, it is not a disease nor a physical limitation. Personality traits are typically used as adjectives, such as calling someone a generous person. Autism may be only one personality trait, but it’s a fundamental one. For example, you wouldn’t say “person with Catholicism” or “person with Americanism”, you would say Catholic or American.


You may notice that both explanations make a persuasive case for using that particular methodology. Both want to emphasize the value and worth of the person. So which is the right one to use? Unfortunately, there’s no clear answer for that. Self-advocates (the appropriate term for people with autism who have reached the developmental ability to speak for themselves) are split, but I personally believe that the majority is in favor of using “autistic”.

For myself, I make a conscious effort to use the terms interchangeably. And when Cheeks is able to understand the difference, assuming he cares one way or the other, I will follow his lead and use whichever he prefers. If you know him, then you know that the best thing to call him is by his name (“Cheeks”, “Ball of Smiles”, and “sheer awesomesauce” are also acceptable terms). And I am hopefully raising him to believe as I do, which is that even if people get their words wrong, they are generally doing so with good intentions.

Frequently Unasked Questions

Occasionally I get a question about Cheeks that is asked delicately, as if it needs to be approached with extreme care. I understand the impulse, but in my case it’s unnecessary to hesitate. It also occurs to me that questions are like pests. For each one I hear, there are likely many more that I don’t. For that reason, I’m going to use this space to publicly answer those sometimes-tentative questions. I’m calling it my Frequently Unasked Questions (I was tempted to use the acronym as is done with FAQs, but decided against it).

Today’s question: “What is Cheeks’ level of functioning?”

I think this question gets asked because people are seeking an easy way to summarize Cheeks in terms they can understand. However, as is the case with most labels, it doesn’t capture nuances. I usually answer by saying he’s moderately functioning. I do that because it’s like calling someone middle-class, it allows for a lot of unstated interpretation. It’s concise, but it doesn’t really answer anything.

The whole answer is, in some diagnostic criteria he measures on the low end, in others he measures on the high end. In order to answer the question fully I would have to break his individuality down into symptoms, which I won’t do.

A little background on the diagnostic criteria of autism: When Cheeks was diagnosed, it was under the terms of the DSM-IV. That’s a manual published by the American Psychiatric Association which classifies mental health disorders. That publication included a variety of named diagnoses within the autism spectrum, such as Asperger syndrome or PDD-NOS. It was superseded in May 2013 by the DSM-5, which is currently in use. The DSM-5 eliminated the varied labels in the spectrum, referring instead to anyone meeting the diagnostic criteria as simply having autism, and then separating by degrees of severity. That means there isn’t anything called Asperger’s anymore (although many within the community still prefer to identify with the word).

This is relevant information because historically, the term “Asperger’s” was used interchangeably with the term “high functioning autism” (HFA). HFA was never a diagnosis, it was a colloquial term that meant Asperger’s. The main difference between HFA/Asperger’s and other forms of autism was speech skills. It didn’t address any other symptom. Someone with Asperger’s could still have other, more severe symptoms than someone who was described as lower functioning on the spectrum.

quotescover-JPG-97There are several symptoms commonly seen with autism, but not all of them are present in every individual. They may include a lack of understanding of social cues and nonverbal communication, stereotypical behaviors (think obsessive and repetitive), speech impairment, hypo- or hyper-reactivity to sensory stimuli, inflexibility about routines or rules, etc. That’s not all of them, just some examples.

Cheeks does speak, but with significant impairment. He’s very empathetic, but social cues are hit-or-miss. He doesn’t really have repetitive behaviors, but he does develop focused obsessions. His self-injury and tantrums can be severe. He makes great eye contact and he’s affectionate. I could go on, but you see the disparity I’m demonstrating.

I also have to consider the message that labels like low and high functioning send. If I call Cheeks high functioning, I’m disregarding the very real and significant difficulties he has. And if I call him low functioning, I’m disregarding his current and constantly developing skills.

There’s no quick yet descriptive way to label anyone on the autism spectrum. In fact, there’s a growing resistance within the autism community about whether to use labeling terms at all. If you’d like to know more about that, you can read a good explanation here.

What I am most mindful of is that these are real, multi-faceted people, and we’re trying to use one term to describe all of their skills and deficits. That sounds like the results of a Facebook quiz, not a genuine and appreciative way to discuss a person. It’s better just to say to me, “tell me about Cheeks”. I promise not to spend hours on the answer, as much as I’d like to. And in return, I’d love to hear about someone you love, too.

[If you have a question about autism you’d like me to answer here, please use the “Contact Me” link on the top menu.]

The Problem With Play Dates and Parties

downloadWhen my older son was Cheeks’ age, we had plenty of opportunities for him to socialize. That doesn’t happen for kids who have autism. A few months ago I came across a story titled, “The First Time My Son With Autism Got a Birthday Invite I Didn’t Have to Decline“, and I only got as far as the title without feeling that familiar kick in the gut over the ways my son doesn’t get included. By the end of it I was a puddle. Cheeks turns 10 in a few weeks, in those years he has only ever been invited to one birthday party. He’s never had one of his own. There are many heartbreaking stories that I have seen about other families having painful experiences when they have tried, so we’ve just had to take a nontraditional approach to throwing parties.

Until a few days ago, Cheeks had also only ever had one play date. That was with a neighbor’s son, who was asked to come to the house under the supervision of Cheeks’ behavioral therapist, to assist him in learning how to play with new friends. Since it was technically a therapy session for Cheeks, I’m not even sure it counts as a play date.

Cheeks and Music Man, hanging out together. Or rather, alongside one another.
Cheeks and Music Man, hanging out together. Or rather, alongside one another.

A few days ago, we tried the play date thing again. This time, with a boy—whom I will call Music Man—from Cheeks’ classroom. Cheeks was so excited, it’s all he talked about from the moment he got off the school bus until we were ringing the doorbell at Music Man’s house. That’s a Very Big Deal, because talking can be such a chore for him. Music Man’s mother and I were hopeful about it going well, but I think we were both a little anxious as well. On the one hand, I was afraid Cheeks would be triggered in this unfamiliar environment and have one of his epic tantrums, complete with the usual self-injury. On the other hand, if there were any safe place for that to happen, it would be at the home of another special needs family.

The play date was kept short, and both boys seemed contented enough. They tried to do a few things together, but they were struggling with the new experience and not knowing what the expectations were. These humble results were deemed a success by both myself and Music Man’s mom.

It took about ten shots to get both of them almost smiling. I love this picture a whole lot.
It took about ten shots to get both of them almost smiling. I love this picture a whole lot.

If they could tell us, I believe that both Cheeks and Music Man would explain that they want to connect, but they don’t know how to do that. They want to be welcomed by other kids, but they don’t know how to behave when it’s offered. They want to play with their new friends, but they get easily confused by social rules and manners. They want to enjoy the time they spend with others, but anxiety is a part of everything they do. Most of all, they are constantly looking for people and places where these challenges don’t stop them from finding friendship.

If you are lucky enough to have a child with a social life, be grateful. Having friends is one of the great joys of life. And maybe ask your child to invite someone over who sits alone, acts funny, or doesn’t always seem like he or she is listening. That small act might just be the first time another child gets included.

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.

Welcome

“A loving heart is the beginning of all knowledge” –Thomas Carlyle

Me and Cheeks. It's entirely possible he gets them from me.
Me and Cheeks. It’s entirely possible he gets them from me.

Welcome! On these pages, I plan to document the process of learning, growing and living with autism. My son, whom I will be calling “Cheeks” (learn more about that here), is a healthy and happy 9 year old boy that also happens to have autism. I’ll be talking about the ways that makes our lives different, the challenges we face, and the many joys we experience. I hope that this site will be a source of information in addition to being a journal of his childhood.

From time to time, I may also discuss Cheeks’ brother, dad, or other people in our lives. But I can’t speak for anyone but myself, and that includes Cheeks. We will be taking this journey together, to the degree that he is able and always with his permission. I hope you’ll join us for some of our steps.