Openness and Acceptance

Sometimes I read "Urban Mom" type forums.  There is a special needs section on my local one, which can be interesting.  It can also be utterly horrifying.

"My son will never hear that he has autism from me.  I would never tell his teachers, either, as they would treat him differently."

If someone said this to me directly, I think my response would be something along the lines of, "I'd sure as fuck hope they would!"

This is one aspect of the "I don't want him labeled" parental impulse, which is pretty seriously problematic.  I've written elsewhere about why a diagnosis is helpful, but I just don't understand parents who have a diagnosis for their kids, but won't seek any accommodations as a result. 

Now, to be fair, I was completely in this camp immediately after Flynn's diagnosis, without really understanding why.  At that point, I couldn't imagine disclosing his ASD to his teachers: would they still challenge him?  Would they try to shunt him off to a different classroom?  What if his peers found out?  And what would he think when he learned of his own diagnosis?  Would he hate himself and his differences?

It was all new and unfamiliar, and I had no idea how to navigate these issues.

I had also completely missed the point of getting an autism diagnosis in the first place: to understand the source of your child's non-typical behaviors and to get them any accommodations they need.

Here's what I wish someone would have explained to me:

•  His teachers already know. Unless this is literally their first year teaching (and sometimes even then), they realize that your kid is different, and they've probably handled his or her particular flavor of difference on multiple occasions.  As an example, the director of special ed at Flynn's first public school worked with him precisely twice before recommending a neuro-psych evaluation. She never said autism to us, but she read the tea leaves pretty quickly and accurately.

• Your kid will never be challenged if they can't focus.  If the classroom is too loud, the lights are too bright, they need to move but are constantly being told to sit still, or if unexpected transitions are triggering meltdowns, they aren't learning. Without accommodations, typical classrooms can be nightmares for our kids.  Use the diagnosis to get them what they need, so they can learn.  If they are already mainstreamed, you have a say in any change of placement the school might propose.  But if that is honestly your primary fear, ask yourself why a special ed classroom is so frightening to you.  Would you consider the change if you knew he or she would learn the most there?  For some kids it will be the best placement, and that's okay.

• Your child's peers already know (or are starting to understand) that your kid is different. Denying that fact won't help her make friends, and if you don't get your kid the social skills help she deserves, she'll be floundering on her own.  I don't think she'll thank you for that.

• Finally, you should tell your kids they have autism.  Acceptance starts at home, and if you're so scared of their diagnosis that you can't even share it with them, you haven't really come to terms with it yourself.  If you don't confront and conquer your own shame and fear, you can't help but transfer it to your kids. 

• There are plenty of recently-diagnosed adults who are excited to learn the reason why they felt as though they never fit in.  In the article above, Lydia (who I know a tiny, tiny bit through the interwebs - before she was famous!), makes a really great point about the power of a diagnosis.  "I never had cause to think I was any different than anyone else, and so with every new failure, I had to conclude I was at fault. . . . When I got my diagnosis, I started to let go of my need to ‘just be NORMAL!’”

Underlying all of these objections is fear.  Fear that your kid won't be normal, won't fit in, won't succeed.  Once you admit that your kid is different and accept that it's fine, these concerns start to fade. 

One of the great things I've seen developing over the past 10 or 15 years in this country, is the idea that everyone should just be able to be themselves.  The progress we have seen in the gay rights movement has so many positive corollaries, and the parallels with the neurodiversity movement are obvious.  We owe it to our kids to be accepting of their diagnosis and to push society towards accepting their differences.  Every kid on the spectrum has value, and advocating for them means helping them own their diagnosis and their needs.

Choosing a Path

***This post is cross posted as a guest-blog at Deciphering Morgan.  Thanks for letting me hang out at your spot, Jessi.***

Flynn, drinking, while sitting on a rock this weekend

 It's really f*cking hard to admit that your kid is different.

Ask any parent what they want for their kid and, after "healthy," you will hear some variation of "I want her to fit in" or "I hope she has an easy path."

I'm still trying to accept that Flynn's path will probably not be easy.

Here in autismland, one of our biggest struggles is how to get through to parents with kids who are struggling, but haven't yet been diagnosed with anything.  Parents who are concerned, but can't put their finger on why.  Parents who look at our kids and see, to their horror, their own kid reflected back. 

It's hard to watch your kid struggle.

I've watched my boy struggle with a lot of things, things I sometimes interpreted as failures.  Often, his struggles come despite my best efforts to support him. It never seems to get any easier to watch.  But before we knew his diagnosis, it was about a hundred times harder, because two key questions remained unanswered.  I didn't know why, and I didn't know how to help. 

I think that good parents often have a (somewhat flexible) vision in their mind of who their kids will be when they grow up.  And by that, I mean not what they grow up to "be" (fireman, doctor, lawyer, etc.), but rather which values they will demonstrate with their actions.  For example, you might attempt to instill through your parenting the expectation that your children demonstrate generosity, kindness, compassion, critical thinking, intelligence, independence, resilience in the face of failure, a sense of humor, etc.

Most parents, hopefully, will understand that success in instilling these values will be largely dependent on their child's personality, meaning they will fail to a greater or lesser degree.  And they also understand that a small child will only be able to demonstrate a few of these.

But even with that knowledge, it's hard to fail as badly as I have failed at instilling certain core values in your kid, without questioning your basic competence as a parent.  One particular example of my failures is the neurotypical version of generosity.  Sharing is hard for most kids at one point or another, but when Flynn was two and three. . . .  It just didn't happen.

When he had a vision of who should touch his toys or how they should be played with, there was no changing it.  He just didn't share toys willingly, for the most part.  Even now, at nearly five, we're still working on strategies to make it more acceptable to him.

This struggle should have been one of our first indicators that we were on a different path from most parents.  There were others we should have spotted, perhaps, but Flynn was our first child.  You're never sure what to expect with a first child, so some of the other quirks were easy to write off (with the encouragement of his pediatrician) as variations on "typical" child development.  He pointed to a couple things and waved a few times, so he's got those milestones down, right?  Never mind that he did it and then stopped for a good year.  As in regressed.  "He's fine," she told us.

So when he wouldn't share anything, ever, it seemed like he was just stubborn.  And kind of a jerk, if I'm being honest.  At two I made excuses for him, but by three I was getting frustrated.  That frustration made me highly conscious of other parents' judgements, made me more embarrassed, and more likely to be harsh with Flynn.  I can't even count the number of parties we had to leave during his third year because some other kid approached him and wanted to use "his" toy (which he had found 5 minutes before). It was mortifying.

All of this just made me feel like a complete failure as a parent, despite doing everything "right," according to the experts.

This is just one example, but the years before he was diagnosed were extremely challenging, as a result of our failure to understand his differences.  So what changed afterwards?  Well, we knew to expect social difficulties, for one.  Shortly after he was diagnosed, a friend said to me, "Wow, you've really gotten good at advocating for him." Things that would have been meltdowns were now chances for learning and teaching.

I finally understood the reasons for his behavior.  Being more of a hard-ass wasn't going to make him suddenly understand the point of sharing.  He needed patience and instruction.  In fact, if there's one thing that being an autism dad has definitively taught me, it's that the hard-ass impulse we all get sometimes is almost always wrong during the early childhood years.

I'm pretty sure that, eventually, Flynn will be a generous and kind adult.  But we're taking a different path to get there. A path with explicit social skills training, lots of rewards for behavior we like. It is a path which takes his reality into account.  No amount of yelling / forced sharing (which, in his mind is just theft) would have taught him anything but resentment.

And you can extrapolate this to most other social skills, and a lot of other settings. For his first year at school, we heard all about his difficulties, but nothing answered the critical question: why?  Why was he aggressive with other kids, seemingly without provocation?  Why was he melting down during classroom transitions.  Why was he so eminently distractable?  Why, despite a year in daycare and a year in school, did he still respond to school drop-offs as though we would never return?

If your kid is having problems, you owe it to them to find out why.  Will you like the answer?  Maybe not. Their path may not be easy.  But a label changes nothing, and a diagnosis isn't a destiny.  But an accurate diagnosis tells you the cause for their behavior, and once you know that, you can start answering your real question:

What the hell do I do with this kid?  How can I help him?

When you know, you can start preparing a path.  If it's not easy, well, at least it will be a path.

Contentment

 

Yesterday, we had an interminable (to me) morning of shopping, after a longer than usual visit to IHOP. This is afterwards, digging in the dirt. I was finally content, as was Flynn.

Have a video

Protest and Privilege

You should be aware that I have all of the privilege.

All of it.  You see, I'm a white male lawyer who works in a position of authority for a bank.

That's what we call a trump card, ladies and gentlemen.

Now that my credentials are established, allow me to speak for a minute on the issue of the Black Lives Matter protests.

I've seen a LOT of Facebook posts and I've read a lot of commentary (and let's be honest, fellow white people, so have you) painting everyone protesting in Baltimore, Ferguson, and elsewhere as looters, rioters, and criminals.  Even the phrase "Black Lives Matter" gets people up in arms.  "All Lives Matter," is the rejoinder I keep hearing from the white folks I know who are likely to be bothered by this type of thing.

Allow me analogize for a second.

I write a lot about autism.  Because, you know, my kid has autism.  A lot of my friends and a pretty good chunk of my family are on the spectrum.  So autism is what I know, and I can tell you all about my experience with it.  It's also a borderline obsessive interest of mine, so I read about it a lot, and I do my best to gather a wide variety of experiences and opinions from all different types of sources.  If I were to tell you something about the experiences common to the autistic community, you could be fairly confident that I know what I'm talking about.

Education is a big issue for the autistic community.  For autism parents, it's probably the primary issue. 

Now, let's say I wanted to advocate for educational accommodations for my kid and other kids on the spectrum, for example an autism-specific classroom in my local public school.  I might come up with a slogan to get my message across quickly and clearly.

I might come up with something like, "Autistic Kids Matter."

Now let's say you have neuro-typical kids in the same school as my kid.  If you see me on the street and I give you a flyer that says "Autistic Kids Matter," and I ask you to support my efforts to get the school board to set up an autism classroom, would you respond by saying, "What the hell man?!? My kid matters too!"

I hope not.

Because you would know that my flyer wasn't about you.

You would, perhaps, realize that I have had very different experiences than you in getting my kid educated.

You might realize that, even though your child's grammar is maybe not quite where you would like it to be, that's on a different level from my child's inability to walk through the front door without melting all the way down into a puddle on the pavement.  Perhaps you've even seen him do it?

Maybe you think the school has serious issues: many schools do, after all. Would you want to fight me about whose kids have it worse? Or would it perhaps be better to try to work together?  Maybe my list of issues could join with yours and strengthen it.  Let's get all the money and do all the things.

Hopefully you see where I'm going with this.  Walk with me there. 

It's true that all lives matter, just as it's true that every kid deserves an education that suits them. But calling attention to special cases and differential treatment can highlight true injustices. If it offends you, maybe you should think about why that is.

Blessings

I've been reading internet comment sections again.  I know . . . I know.  I've been trying to stop, but it's so hard.

Sometimes in comment sections of stories on autism, you run into a particularly . . . righteous type of individual.

"Your child is a blessing from God," they say.  "Special parents get special children."
"Please stfu, you're being insulting" you say.
 "How could that possibly be insulting?" they reply.  "I just called them a blessing.  My autistic child is a blessing, too.  They're special and so is your child."

And on it goes, until the internet explodes all over their special faces (hopefully).

Don't be this commenter, well intentioned as they may be.

Why is this insulting?  Let me count the ways:

• You're setting my kid apart from everyone else.  I get that you're trying to do it in a nice way, but he gets enough of that. Let him be himself without calling it out.

• Autism is part of who my son is, but we try not to let it define him.  He's not a special angel, he's a kid, who does normal kid things most of the time.

• You're lumping all special needs kids together.  Separately.  Let's try for inclusion.

• It's patronizing as hell (that's when you talk down to someone).  I stole this from a meme because it is perfect (sorry for the lack of attribution, I have no idea who the source is).

• Special needs parents don't need pedestals, we need support.  If you call us heroes, you assume super powers.  I'm an ordinary person.  Assume I can tolerate what you could tolerate.

Just a friendly public service announcement.

Also, don't say, "this kid just has asperger's, it's not a big deal."  I will come to your house.  And my kid will teach you a lesson.

Fears

I'm a middle aged white guy who wears a suit (or some close approximation thereof) to work most days, so I don't worry much about cops.  Well, I didn't.

Then I had a kid who is the worst at respecting authority.  If you tell him what to do and you sound angry, he's probably going to hit you.  Which is a problem in general, but is amplified with police officers.

I have already started trying to work with him on how to act with police officers.  So far, I have been extremely unsuccessful. I fear for his future.

Keep in mind that he is four.  If you think this is too young to worry about these things, please read this article about use of police for discipline in our kids' schools. Six and seven year-old kids get arrested for meltdowns in this country, and students with disabilities are arrested at about twice the rate as neuro-typical students.

Diagnosed as autistic, Kayleb was being scolded for misbehavior one day and kicked a trash can at Linkhorne Middle School in Lynchburg, Virginia, in the Blue Ridge Mountains. A police officer assigned to the school witnessed the tantrum, and filed a disorderly conduct charge against the sixth grader in juvenile court.

This is simply the criminalization of autism, and that first interaction led to a spiral of negative consequences for Kayleb.  In a separate, but related, incident, the officer grabbed 11 year old Kayleb, who responded by trying to push the adult officer away.  Kayleb was charged with felony Assault on a Police Officer for his attempts to protect himself.

We're a few years away from 11, but I know my kid.  There is no doubt in my mind that he would respond just as Kayleb did in that situation.

This is far from the first article to strike fear in the hearts of autism parents. Many of my friends who read the story of Neli Latson earlier this year saw parallels between his reaction to a police officer's physical attempt to impose his authority and their own children's behavioral patterns.  Many of us fear even a single interaction between our children and law enforcement, because children or young adults who, constitutionally, cannot bend to authority, cannot be subtle or control their emotions, are likely to fall into an escalating cycle of violent responses to aggressive actions.

Rule number one for interacting with my boy: don't put your hands on him when he is upset. He will hand you your ass.  Or bite you on it.

There are many autism parents who will not call the police despite being in physical danger. I read an article last year about a mom who built a safe-room for herself for use during meltdowns.  She refused to call police because she was (justifiably) afraid her son would be shot, but needed a place to go to ensure her own safety.


If the system is broken, you have two options:  try to fix the system we have or build a different system.

I don't think I will ever be comfortable with my son or a child with similar neurology to him interacting with an armed police officer.  A new system is the approach I would take if I could.  In an ideal world, I would want an alternative emergency system for parents or caretakers facing a mental health crisis.  I would want an unarmed response.  I would want social workers and crisis counselors, not police officers.  I would want automatic diversions to crisis treatment centers for folks with existing mental health diagnoses.

In other words, I want my son to be given reasonable accommodations for his disability. 

Is that really too much to ask?