A day in the life

I tend not to use the blog as a daily journal or chronicle of our life.  I do put random snippets up on the facebook page, but nothing like a lot of bloggers.

I think it's partly laziness, partly lack of time.  Also, I tend to disbelieve that anyone could be interested in the mundane details of what happens to me over the course of a day. 

Maybe that's not true, so here goes.  I woke up, as I do every morning, with one of the kids.  Don't like an alarm clock?  Get a baby.  It's been going on 5 years, now since I've needed one.  Anyway, this time it was the baby, and it was 6:30, so not great, but not too bad.  Flynn woke up on the stroke of 7:00, and watched a bit of TV, while I tried to get the baby to eat, a futile exercise that we both end up resenting.  Giving up, I tried a bottle, which he devoured like the ravenous beast he is.

After I turned the TV off, we tried a little sandbox play, during which their apparent harmony lulled me into a false sense of security.  I wandered in to check the time and quickly sprinted back out when the sandbox turned into a war zone.  The instigator was not readily apparent, so all parties were warned and I stayed nearby to supervise from then on out.

My parents came to get the baby at 8:30, as the wife intended to work and was sick, to boot.  I played with Flynn for a while, fed him, and then put the TV on around 9:30 so I could stumble upstairs for a short nap.

The wife got up to do her work and deal with him and then sent him to wake me at 11:00 or so, hoping to actually get some work done, I assume.  Flynn crawled into bed with me, as is his wont, and we cuddled for a few minutes before I got up and got ready to go.

I then took Flynn to the playground, Dunkin Donuts (so healthy) and a second playground, near our old house.  We played soccer on the kid-sized field there and I tried to explain some rudimentary tactics, which went a bit over his head.  Then we ran back to the house to meet his ABA therapist.

We had a grad student (Masters of Education, and a current special ed teacher in a self-contained classroom in an affluent suburb nearby) coming to interview us about having a recently diagnosed child with autism for a paper.  It was interesting - she gave me a bit of the teacher's perspective, and I was impressed with how progressive her teaching philosophy was.  She had eliminated a lot of the stim-reduction techniques that had been used in the past in the classroom and was strongly in favor of letting kids use whatever coping methods worked for them.

It was good to see a strong advocate for the kids in that position, which is not always the case, of course.  She asked about my experiences as a dad, which I have explored in depth here and will not rehash.  At times I felt like I should just send her a link and say, "read this."

Anyway, afterwards, ABA was done so we had our daily fight with Flynn over how much dinner he needed to eat.  After dinner we went to a nearby playground and played an elaborate game he made up on the spot with a little girl around his age.  She was awesome and I even got both of them to compromise slightly when their preferred rule-variations conflicted.  He wanted water on the way back and I had none, for which sin I was told I was a "bad daddy."  The boy was exhausted and out of spoons - that was the third park of the day

Bedtime came shortly, with the requisite requests that I "sleep with him until the morning."  Not sure what age those requests stop - I'm hoping before he graduates high school.  He was all sweetness and light, as usual once he's in bed.  Lots of hugs and kisses and requests for more time with me before sleep.  I'm a sucker and usually give in. Obviously.

Perhaps a non-standard Memorial Day, but we have no regrets around here.  Maybe some day we'll be a backyard barbeque kind of family, but we're happy with the alternative we have.

Message to a Non-Default Spouse

Me, working on my computer and neglecting the children

It has recently come to my attention that not all autism dads are as awesome as I am.

Okay, that needed a sarcasm font. I make as many parenting mistakes as anyone else.  But I'm here, I'm engaged and doing my best. And, unfortunately, from what I hear from many of the autism moms I know, there are a lot of autism dads out there who need to up their game a bit.

So here's my message to those dads, one guy to another.

• It's not mom's fault.  Real talk: she didn't baby him too much. He doesn't just need more discipline.  Yelling at a kid who is already freaking out is just going to make things worse. This is a neurological disorder, not something you can discipline away. 

• Read up on it.  Autism is a complicated disorder, potentially affecting almost every aspect of your child's behavior. The more you can learn about autism, the better you will understand the reasons for your child's behavior, allowing you to parent from a place of understanding and compassion, rather than fear and denial.

• Understand the therapies.  Perhaps the biggest frustration I hear from moms is that dads "aren't on board" with various treatments and therapies. Sometimes it's due to misunderstanding, sometimes a case of denial. There's no excuse: get informed and figure out what you can do to help. Don't just be an obstacle because you're scared. If you have real objections, you owe it to your kid to verbalize them in a non-confrontational way.

• Confront your prejudice.  Everyone in our society has prejudices. That includes you. For people with kids like ours, getting over our hang-ups about ridiculous societal norms is our entire job. It still annoys me a little when someone stares at my kid for flapping with excitement, but I'm not embarrassed of him. I'm embarrassed for them. Because the "no happy flaps" rule is dumb. We should all be so lucky that we get that excited.

• Give your spouse a break.  Hahahaha. Just kidding! You can't handle the kid on your own! Oh wait, yes you can. Let her get out of the house on her own every once in a while. If that means screen-time for everyone, that's what it means. The kid will be fine. So will you.

• Grieve after the kids are asleep.  A lot of parents feel the need to mourn the loss of their "expected" life. Maybe you wanted a kid who would grow up to be a star soccer player, throw a 95 mph heater, or, hell, just play catch with you. I get it. Take all the time you need. But not while they're awake. When they're around, your job is to be an awesome parent, whatever that means to them. If that means you're the dedicated YouTube video finder, awesome. If that means you help build the train tracks, do that. Don't know what to do? Ask mom - I bet she does.

• Frustration is allowed.  Every parent gets frustrated, both with their child and their partner. One thing I have seen a lot in my own house since the diagnosis is misplaced frustration. The wife or I gets pissed about the kid's behavior, but it gets misdirected at our partner.  If you see yourself doing this - own it.  If you see your spouse doing it, talk about it (gently, and after they've calmed down). The fear and anxiety of a new diagnosis can make anyone extra touchy. If this is a problem, talk about it and figure out strategies that will help everyone.

• Plan for the worst.  Parenting is a million times better as a team. We all have moments where we are sure we are about to lose it. I strongly suggest that you have a plan in place for when one of you needs to "tag" out of a situation where your emotions are spiraling and the kid is about to suffer the consequences.

• Communicate communicate communicate.  If I'd just put this first, I wouldn't have had to write the rest of the post.  I know it's hard - I hate talking, too, but you must get on the same page about, at a minimum: 1) general parenting philosophy, 2) discipline, 3) treatments and therapies, and 4) division of non-parenting responsibilities.  

• Make time for each other. This is hard, but important. Do it. As often, and in as many positions as you can.

If you can do all of this, well, you're a better man than me, certainly.  If you can do most of it, you're probably an awesome autism spouse.  Go forth and help out.  You can do this!

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.