Tag Archives: special needs

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.

O Necessary Sin!

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Earth

 

A few days ago, I came across this post on another autism parent’s blog, and it got me thinking, again, about the question of God and his role in stuff like this. The author is an associate pastor in a nondenominational church in Oregon. He has five kids, one of whom is on the severe end of the autism spectrum. In the post, he talks about how the Christian faith is a “lousy force field.” He says that being a Christian and belonging to a church really doesn’t insulate you from all the bad stuff that happens out in the real world. “It’s a lie,” he says. “We are living neck deep in the stink of life just like everyone else.”

Exactly. That’s our experience as well. Believing in God, going to church, having a regular prayer time, etc. None of it guarantees you a problem-free life. It may help you face the challenges when they come. It may help make you more peaceful, more patient, and more trusting. But it won’t shield you from the bad stuff. It should help protect you from sin and all the bad stuff that is the direct result of your own personal sins. But it won’t shield you from the bad-things-happen-to-good-people stuff.

I’ve got to hand it to this fellow for being honest about how broken he feels by his son’s situation. He doesn’t try to put a brave face on everything because he doesn’t want to give Christianity a bad name. He’s clearly been through the wringer, and he’s not going to deny it.

I also want to commend him for his determination. He hasn’t given up on God. He’s still out there helping people. He’s still pouring himself out for his church and leading a congregation in prayer—all with the goal of bringing them in touch with God. Really inspiring!

When Bad Stuff Hits.

But what this post got me to thinking about, again, was something I hinted at in a more recent post of mine: My kids on the spectrum have a prophetic role to play in this world. And for that reason, I am beginning to think that their ASD is part of God’s plan—for them and for the people whose lives will intersect theirs.

Here’s the thing: We want our children to be perfect. We want them to have good health, a good education, a bright future, no real problems or major roadblocks on the way to happiness.

But then autism happens. Or cerebral palsy. Or mental retardation. Or childhood diabetes. Or a host of other genetic, uncontrollable diseases and disorders. Suddenly the dream of a near-perfect life is gone. Our hopes are shattered. We worry constantly about our children’s futures. Their present is a long list of treatments, medical bills, and huge adjustments to everyday life. What happened? We had such beautiful plans, and now they seem smashed to pieces.

Quite often, too, we begin to wonder where God is in all of this. How could he let this happen to our innocent little child? What kind of Father is he anyway? I know a thing or two about fatherhood, and in no way does this fit into my definition. Many people, hurt and disenchanted, turn away from God. Others try to comfort themselves with analgesic statements drawn from inspirational posters and Chicken Soup for the Soul books. Anything to help reconcile our plans and dreams with the far more difficult reality thrust upon us and our children.

Frying Other Fish.

But what if this was part of God’s plan all along? What if this was part of the way he dreamed our children into existence from the start? After all, the Bible tells us that every hair on our heads is counted (Matthew 10:30). It tells us that God knit us together in our mother’s womb, and that every day of our lives is already written in his book (Psalm 139:13, 16). Drawing on a particularly memorable description of the act of conception, it tells us that God poured us out like milk and curdled us like cheese (Job 10:10). If he was so intimately involved in our children’s creation, how could something like this slip in unintended?

Actually, it’s not too hard to imagine that God had a hand in this. His ways aren’t our ways, are they? We may want a comfortable home in the suburbs, good schools, and a promising career for our kids, but I suspect that God has other fish to fry. Not that he has anything against the middle-class American dream, but I think his sights are set a good deal higher. He seems to be much more interested in a world marked by love, compassion, justice, and mercy. He seems to care more whether the people he created look and act like his Son—a poor carpenter who didn’t have a place to lay his head.

So how is he going to get this to happen? Certainly not by giving everyone the same homogenized, perfect, problem-free lot in life. If there were no poor, there would be no generosity. If there were no sickness, there would be no compassion. If there were no hardship, there would be no growth in character. There would only be one big, bland, barrel of blah. Yes, God wants to give us good gifts. But the gifts and the goodness he has in mind far outweigh the trinkets and gewgaws we often ask for.

No, there has to be sickness. There have to be disorders. There have to be natural injustices like autism, down syndrome, and MS. It’s all part of the “happy fault” and the “necessary sin of Adam” that we Catholics exult in at the Easter Vigil.

So no, life isn’t fair. It isn’t supposed to be fair—at least not according to our standards. It’s about how we take what God gives us and use it to build his kingdom.

A Royal Calling.

That’s why I think kids with special needs have a valuable, prophetic role to play in this world. In a way, they are God’s word to us. They call us to a deeper, more meaningful life. With their innocence and vulnerability, they invite us to become more than the collection of our possessions, our education, and our ambitions. They call us to become Christ for them, even as we see Christ in their eyes.

The pastor I mentioned above ended his post with these words:

I don’t know whether Jackson will be fully restored in this life or the next, but he will be restored. It will happen. That means my son and others like him—the ones who for centuries have been forgotten, bullied, mocked, and thrown away—they will be heralded like Kings and Queens, and celebrated like rock stars.

While I pray every day for my kids’ healing (and I’m not always sure what that means), I get the sense that their full restoration won’t happen this side of eternity. They have too important a part to play. But I do believe that in this life they will be “heralded” like the royalty they are—if by only a few people. In my heart I try to do that every day, and I firmly believe that they’ll find other people who will treat them with just as much honor and reverence. People who will love and accept them for everything about who they are—not in spite of it.

I know that’s how God looks at them.

Why We Cry. . .

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kiss_cheeseburgerRecently, a friend at work sent me this story about a girl with autism who was treated very well by the staff of a Chili’s restaurant in Midvale, Utah. Apparently, the Facebook post that this story was based on has gone viral, with nearly 50,000 comments. And I can see why. If you have one or more kids on the autism spectrum, you don’t expect people to go out of their way to help you or your kid. Instead, you get used to the baffled stares, the cluck-clucking, and the occasionally mean comments about your children and your parenting skills—or lack thereof.

For Katie and myself, whenever we contemplate going out to dinner, we have to include a few questions that most families wouldn’t bother to ask. Questions like: “Is the place too dark? Too bright? Is it noisy or quiet? Is there plenty of space between the tables? Do we know if the staff is flexible? Is there more than one way out in case of a melt down or in case one or more of the kids needs to take a break and get some fresh air?” So as you can imagine, we don’t go out that much, and when we do, it’s usually to our local McDonald’s, where many of the people already know us.

Anyway, as I said, I read this piece about a week ago, and it kept popping up on my Facebook account. Friends messaged me about it, or posted it to my wall, or shared it on their own walls. Clearly, it moved a lot of people. And one of the best reactions to this story I have read comes from a man in Canada who has a son with autism. His name is Stuart Duncan, and he writes a blog called “Autism from a Father’s Point of View.” Check it out, and see what you think.