Tag Archives: autism

Blues Radio

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web-maxell-blown-away-guyYesterday was an easy Saturday, when I had the luxury of running a few errands on my own. Normally, I enjoy these rare events when I can get out and knock a few things off my to-do list. But today was different. I just couldn’t slow down my racing mind as I drove around town. Like a car radio that was stuck in “Seek” mode, I kept changing stations from one worry to another.

<click> To thoughts about one of my daughters, whose perseverations and OCD-like anxiety have increased dramatically the past few months. On the short, ten-minute drive to her tumbling class last week, she asked Katie over and over and over again, “Are we going to be late? I can’t be late. Please hurry up, Mom, I don’t want to be late. My friends won’t like me if I’m late.” (Katie left ten minutes early to stave off these worries—but to no avail.)

<click> To thoughts about another son, who can’t control himself when a cascade of negative emotions comes over him. The slightest word of correction will send him into a rage, as will the smallest disappointment or denial of a preferred activity. I have worked and worked with him, trying to teach him “cooling thoughts” and self-calming activities, but none of it helped. Now we have to turn to medication to help regulate his emotions.

<click> To thoughts about how to convince a glacier’s-paced school system to give my son the help he needs in social and pragmatic language skills. He’s a whiz at simple mathematics and spelling, but he doesn’t always get nonverbal cues, and he can have a hard time expressing himself clearly. The inferential thinking involved in reading comprehension and word problems is a challenge for him, but his teachers are reluctant to do more, since his other skills are buoying up his grades. “He’s not failing, so what’s the problem?”

<click> To thoughts about the son who can spend hours at a time in his room watching his favorite YouTube personalities talk about video games. His self-isolation is giving him a short temper with his siblings and keeping him from the few friends he has. But it’s like pulling teeth to get him to interact.

<click> To thoughts about finances and all the visits to therapists, psychiatrists, counselors, and doctors for everyone. And then there’s the private, Aspergers-only school our two oldest ones attend—and which at least one more will likely end up in.

<click> To thoughts about our daughter the hoarder and what it’s going to take to get her to part with some of the things she has collected—or at least organize her bedroom so that we can see the carpet. And to thoughts about what makes her so anxious that she feels such a deep need for all these toys. For a recent overnight trip, she stuffed more than twenty of her plush Pokémon figures into a backpack just to keep them by her side. They never saw the light of day, but she refused to be parted from them. “They help keep me calm.”

Daddy’s Home!

By the time I had finished my run and was pulling into our neighborhood, I was feeling pretty depressed. So many unanswered questions. So many problems needing to be solved. So many signs pointing to the challenges my kids have yet to face. (Not to mention, my errands were a bust. No store I visited seemed to have anything I was looking for.)

This is what it can be like living with autism and Aspergers—especially in a world that reduces things and people down into their various components. You wind up seeing everything in terms of the goal, the challenge, the problem, the next “thing” that needs to be addressed. With so many kids on the spectrum, Katie and I have to juggle a variety of diagnoses and an even wider array of manifestations of them. So it’s easy to focus on the problems and miss out on the bigger picture.

It took me a while to come back down to earth and remember that my kids are more than the conglomeration of their problems. It helped a lot when, as I walked through the front door, our youngest popped up off the sofa and ran to me, his face beaming with delight. “Daddy! You came home! I missed you so much!” Then his brother, four years older, came down from his bedroom and shouted, “Yay! Daddy’s home!” and then began jumping up and down with great gusto and doing his signature spinning headstand on the sofa.

None of the challenges went away, of course. They are all very real and still demand my attention. But none of them can overshadow the innocence that these kids have. Even my oldest two, for all their adolescence, have a childlikeness about them that melts my heart. They all have their melt downs and tantrums, but they still have that wide-eyed wonder and openness that tells me there’s still loads of hope. It’s when they shut out the world—or shut me or Katie out—that I need to be concerned.

I suppose the fact that I see my kids in such a reductive way every now and then is, I suppose, to be expected. I’m just glad that today my kids helped me move beyond this partial vision so that I could see with my heart and not rely on my racing mind.

The next time I’m out on my own, I’ll listen to NPR.

Dissecting a Victory

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So today was the big day. We had our eligibility meeting at the school to determine if our fourth child, a third-grader, qualified as being on the autism spectrum according to the school district’s definitions. And I’m happy to report that the IEP team (consisting of the school psychologist, the speech therapist, our son’s teacher, the assistant principal, our private psychologist, and Katie and me) all agreed that he met the district’s criteria for being identified as ASD.

A Good Day.

On one level, not much has changed as a result of this new designation. He is still receiving the same services he received under his previous designation as “Language Impaired.” We’ll revisit his Individualized Education Plan later in the school year to see if he needs more help than he’s currently receiving.

But having him identified as being on the autism spectrum is also a safeguard for the future. Should things go downhill for him in the social/emotional sphere, as it has done for our older daughter, school officials will know that part of it is because he has autism. And that will alter the way they intervene and how they will help him.

Should he run into further glitches in his auditory processing, his short-term memory, or his ability to adapt to new surroundings (like changing classes in middle school), it will be that much easier for accommodations to be put in place to help him.

And since kids on the autism spectrum tend to be literal thinkers, it will be easier for him to access special-ed helps as the curriculum begins to demand more inferential thinking and not just rote memory or quick calculations. He can learn these skills, but he’s probably going to need more help in making the jump from the literal to the figurative.

So this was a good day. It was a long time coming, too—the fruit of a couple of very tense preliminary meetings and hours and hours of preparation on our part. It came after we had to challenge the previous assistant principal’s thinly-veiled insinuations that we didn’t know what we were talking about and that she was the real expert in autism. It came after a couple of years of seeing his school-related melt downs increase in frequency and intensity. And it came on the heels of two similarly long-fought victories for his older brother and sister. That makes us three for three. Quite a lot to celebrate, don’t you think?

Walking a Rocky Road.

So why, as Katie and I left the meeting with our son’s new designation in hand, did I not hoot and holler in victory? Why was there a lump in my throat instead of a smile on my face?

Because my son still has autism. Because yet another official organization has recognized—and thus reminded me—that he has a disability that will impair him for the rest of his life.

Don’t get me wrong. I’m glad for what we did. It’s going to protect our boy through his entire educational career. It’s going to open the door to a set of services and accommodations that will help him learn how to live in this strange world filled with neurotypical people.

But I know that through that door lies a path of misconceptions and of challenges that I wish he would never have to face. A path where potential friends may not understand him and may even reject him.

A path where potential employers may not see the gifts he has to offer.

A path where the joys and comforts of a family of his own may be forever elusive.

It’s a rougher, rockier path than most of his peers will be walking. And that’s never a fun thing to think about.

A Sobering Reminder.

We got a stark illustration of this just a few hours after that all-important IEP meeting. Katie called me at work to let me know that our boy had had a rough day at school. Because he didn’t complete a homework assignment over the weekend (we thought he had), he received a 40% grade.

It wasn’t a huge assignment, and it wasn’t a big deal. But in his literal brain, it was a complete and total failure. He came off the bus with his fists clenched, his brow furrowed, and his jaw trembling in a heartbreaking mix of anger and shame. Katie tried to help him work through it, but the rest of the afternoon was a complete loss: melt downs over new homework, high-pitched tantrums at his “annoying” younger brother, and anxious, hyperactive “stimming” that was so intense that I was afraid he might hurt himself.

He did calm down eventually, and we got his homework done. In fact, once he got all his frustration and anxiety out, he sailed through most of the work. He’s a pretty smart kid, after all. He just needed to expend himself before he could get his brain back in gear.

So this is the challenge he will be facing—and Katie and me along with him: how to manage the down side of his autism so that all his gifts and talents can shine. Because he really is a sweet, innocent, affectionate, intelligent, perceptive fellow. He has so much to offer. There is so much he can accomplish. He has the potential to enrich the lives of countless people. He just needs more help than most in getting there. He may have some serious glitches, but he’s an awesome kid. I just want everyone else to be able to see that.

It’s our hope that today’s “victory” will help this happen.

Leo Zanchettin, Prosecuting Attorney

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VinnyWell, it’s that time of the year again—the beginning of school and its attendant Rite of Introduction. That’s when you get to meet your kids’ teachers and size them up. Are they the type who live solely by the rules and standardized tests? Are they the kind who have high expectations for their students (a good thing), but don’t know how to help their exceptional students meet those expectations (a not so good thing)? Are they the kind who will look at you like you have two heads when you tell them that your child has an autism spectrum disorder? Will they be quick to respond to your e-mails and questions? Or will you have to pry it out of them?

It’s also the season for IEP meetings. Those wonderful exercises in diplomacy, tact, and tongue-biting. Those opportunities to do penance for your past sins and to try mightily to avoid any future sins.

A Successful Pre-Trial Hearing.

I’ve been thinking about IEP meetings a lot recently, because we have a big one coming up in a couple of weeks. It’s for our fourth child, who is entering third grade this year. Last February, we had a pretty tense gathering with his IEP team at school, when we requested that he be tested and formally recognized as being on the autism spectrum. After a ninety-minute “discussion” on the issue, Katie and I prevailed, and the process of testing him was put into motion.

To this day, I don’t know what turned the tables. For the first hour, I was sure we were going to be denied. But then out of nowhere, the assistant principal began passing out consent forms. Katie thinks it had something to do with the fact that I used the word “irresponsible” in describing the administration’s response to my son’s needs, but I’m still not convinced.

Anyway, the school took all the time it could in conducting the tests, so we couldn’t meet before the end of the school year to discuss the test results. So now we are gearing up for the very important get together, when the school will either agree with us and formally designate him as needing ASD services, or they will give some new variation on the standard line: “he seems fine to us.”

I’m not too worried this time. We’ve got enough evidence from the school’s own testing as well as diagnoses from our therapists to win the day. Granted, schools can be pretty clever when it comes to finding a way out of these things. But we’re getting familiar with the tactics and are learning how to counter them. This is, after all, the third time we’ve been down this road.

I Hate It.

But here’s the thing. I hate these meetings. And not primarily because I have to deal with a skeptical, reluctant team of educators and administrators. What I hate more is the fact that I have to convince them. I have to take them by the hand and walk them through our all the aspects of our son’s ASD.

I have to rehearse every “academically relevant” way in which his disorder manifests itself—including the melt downs over homework and the inability to read social cues and the sometimes tragic, sometimes comical things that come from this inability.

I have to become something of an NSA agent taping his conversations and culling through them to find the evidence of his uneven pragmatic language skills.

I have to pore over all of his testing data, highlighting every deficit so that I can show how it relates to his ASD and how it will affect his ability to move through the curriculum.

I have to give special emphasis to his challenges and deficits and defects (God, I hate that word). When a teacher says something like, “But he’s so cute and charming,” I get to agree, but I can’t dwell on his good qualities for too long. I have to get right back to his needs.

In other words, I have to build a case against my own son, sort of like the way a prosecuting attorney would build a case against a criminal. Because the school will hang on to any positive inkling about him and use it to deny him the services he needs.

That’s what I hate.

Because he’s such a good kid. He’s smart. He’s sensitive. He’s energetic. He’s loving and kind. He’s got the brightest light in his eyes and the liveliest spring to his step I’ve ever seen (yes, he’s a toe-walker). Here he is, my own flesh and blood, and I have the singular privilege of telling a group of low-level bureaucrats everything that’s “wrong” with him.

A Smile on My Face and a Pit in My Stomach.

What’s not to hate?

But we do it, as we’ve done for two of our other children. As we’ll likely have to do for two more. We do it because we want them to get the “free and appropriate public education” that is their right by law. We do it because we want them to be given a fair chance to learn and grow and develop and make a positive contribution in a world that can seem so alien to them. We do it because we love them too much to let them or their school think that just squeaking by is good enough.

So there I’ll be in a couple of weeks, patiently and carefully building a case against my own son. I’ll do it with a smile on my face and a pit in my stomach. And I’ll be praying the whole time that I not lose my cool. Because I want what any parent wants: the best for my kid.

Autism Blues Celebrates 1000 Ausome Things #AutismPositivity2013

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autismpositivityflasblog7

So here we are at the end of another Autism Awareness/Acceptance Month. This year, I discovered this really interesting site. It’s a “flash blog” called Autism Positivity. I’m guessing that a flash blog is something like a flash mob. It appears out of nowhere, does something really cool, and then disappears. The goal of this flash blog is to present 1,000 pieces from people touched by ASD—pieces that celebrate the positive side of the ASD constellation.

So what’s “ausome” about being an ASD dad? Simply put: my family.

• First, there’s my oldest, a thirteen-year-old boy with PDD-NOS. Socially, he’s catching up with his peers. He’s beginning to find his “tribe” in the heartless scrum that is middle school. He has a quick wit and a nimble mind. He also has a rich vocabulary. So what if he sometimes can’t distinguish between the literal and figurative speech some of his friends use? It’s helping him learn the ways of that alien species, the neurotypical adolescent.

• Then there’s my twelve-year-old daughter. She is as aspie as they come, and she knows it. And she owns it. And she uses it to her advantage as often as we’ll let her. She can retreat into her own rich, private world for hours but still come out of herself when she sees the need. She clearly marches to her own drummer, but she is beginning to show that she “gets” where her brothers and sister are at. Plus, she has my mother’s smile. What’s not to love?

• Then comes my nine-year-old son, whose Aspergers reminds you of Mozart or Albert Einstein. Intellectually, he’s got enough wattage to light up the Manhattan skyline. He can’t stand to wear denim jeans (“They hurt!”), and he is never happier than when he’s on the computer building new worlds in Minecraft. A passionate soul, he has an exaggerated sense of justice, taking deep offense at every joke or slight. But that same passion can fuel him for hours as he builds complex Lego structures without a blueprint or develops a new outside game for his younger siblings to play.

• Next up, my seven-year-old son, who has high-functioning autism. He has the brightest smile in the universe and the sweetest disposition—when he’s not melting down. And when he does melt down, he recovers with amazing speed and is very quick with a repentant hug and heartfelt words of contrition. He doesn’t quite know how to make friends on the playground yet, but it doesn’t bother him. He’s content just to swing on his own, staring into space dreaming his dreams.

• Then there’s my five-year-old little girl, who has ADHD and may well be aspie. She’s an impish little spitfire of a thing. Some might call her restless or easily distracted. I call her Little Pip because she’s always hopping around. A daddy’s girl from the day she was born, she loves nothing more than a warm cuddle or a kiss on the cheek. What does she dislike? Clothing tags. Hates them with a passion. Now if only I could get her to look me in the eye!

• Then there’s the youngest, a four-year-old boy with PDD-NOS. He too is perpetually on the move—except when he decides to “plank.” He is extremely passionate about Angry Birds—so much so that he will play the game with any projectile he can find. Including his dinner. Which, of course, cannot be eaten sitting down. He is very good at mind-blindedly annoying his siblings. Or his mom. Or his dad. But he often gets a pass, because he does it with such a broad grin that we tend to melt.

• Finally, there’s my wife. (No, I’m not going to tell you her age.) She’s not on the spectrum, so she’s not officially “ausome.” But it doesn’t matter, considering how awesome she is. Day in and day out, she lays down her life for her kids and never complains about the work. No regrets. No recrimination. No remorse. Just a lot of love and a dogged determination to help our kids become the best version of themselves possible. A psychologist friend once told me that raising one special-needs kid is about as demanding as raising three neurotypical kids. So there’s Katie, raising the equivalent of 18 children, and doing it with nothing but grace, wisdom, wit, and energy.

So that’s what’s ausome about ASD. It’s funny, but because we live and breathe this stuff every day, we can’t always tell when our kids are being aspie or being just plain kids. We simply don’t know what neurotypical looks like!

But that’s probably the biggest blessing of all. The labels don’t matter. What matters is the love. What matters is enjoying our kids for the wonderful constellation of gifts and challenges each of them has. What matters is knowing what every dad should know: that to touch your child is to touch heaven itself.

Dude!

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Take a look at this story about an aspie fellow trying to survive a conversation with an alien species—in this case a neurotypical alpha male. It’s really quite entertaining, but it also gives a glimpse into all the work that folks on the spectrum often have to put into supposedly normal, everyday interactions. If only the exchange had been videotaped!