It’s hard on a mom…

In my last post, I promised to tell you about the low this week. I put it off a couple of days—it’s amazing how much easier it is to write the highs than the lows . . .

TJ’s been driving for a couple of years now. At first, he drove only within a couple of miles of home, and as time went by and he gained experience and confidence, the circle gradually got larger. And more complex—we live just off of a major interstate and he’s slowly built up the experience and comfort with interstate driving. (This is exactly what we did with our other kids, by the way.)

He headed back to college via the interstate on Wednesday. It had rained overnight and was still a bit dark and drizzly, and he was involved in an accident on the interstate. He and a tractor-trailer bumped—not sure exactly how—but the impact shot him across two lanes of traffic and into the median, where the cables separating the east- and west-bound lanes stopped him, peeling most of the metal off the driver’s side of the car in the process. Oh – and as he crossed traffic, a Dodge Ram clipped him on its front driver’s side, too.

Not a scratch on anyone involved, which is a miracle! And I mean that literally—you don’t often see “large truck,” “rain,” “interstate,” and “three-car accident” in the same sentence unless it also includes at least some personal injury.  But not this time.

But still, it’s really shaken him up. Most people are involved in at least one wreck in their lifetimes and although I don’t know statistics, I suspect that the odds for younger drivers are higher. And here, given the road conditions, the accident could have happened to anyone (though he got the ticket—more on that and our experiences with first responders later, as well.) He’s had a hard time sleeping and putting it out of his mind to study for finals. He’s seen his school counselor a couple of times, which helps. He will get through it.

When I say that living with autism is waiting for the other shoe to drop, I mean the opposite of a victory in the realm of autism—something happens because of autism that brings the world crashing down, at least momentarily. But as TJ gets older and more independent, I’m learning that the other shoe may not be autism-related at all. Instead, like every one of us, life happens to our kids just because they’re living. I’m realizing that even if I can work to minimize the impact autism has on TJ’s life, but I can’t stop bad things from happening. The more he lives his own life, the more vulnerable he becomes to the just-life stuff.

It's hard on a mom.

“Mom I really messed up…”

This has been a week of highs and lows—if you parent autism, you understand.

TJ returned to college on Monday, driving himself to campus for the first time. He was super excited to get to take his car. And although I’ll admit to being a little nervous—no more than with my other kids, though—I knew it was time.

He called in a panic about 9:00 that evening. “Mom—I really messed up. Turns out I was supposed to write a research paper over the Thanksgiving break and I forgot.”

“Okay. Well, what’s your topic? How much can you get done before your class

tomorrow?” At that point, his older sister motioned for the phone, so I handed it over. She walked him through the steps he needed to follow, then put on her “firm-but-loving-and-yes- you’re-going-to-do-this” voice that makes her good at her therapy job: “Look, Bud—you’re just going to have to suck it up and stay up tonight until you get it finished.” The “high” is in what didn’t happen. He didn’t panic. He didn’t have a meltdown. He didn’t come running home. Instead, he put something passable together overnight, then talked to his professor. He asked for another day so that he could improve his work, and the professor agreed. He drove himself home after class yesterday to work on it with his sister, the recent college-grad who can create pristine APA-style reference pages in her sleep (well, almost.) All good, right?

Part of autism parenting is waiting for the other shoe to fall—no matter how perfect the day or how sweet the victory, we know the tide will turn. The only questions are “when” and “how hard.” IYKYK.

Today, they turned. Hard. Too much to write tonight, but I promise to fill you in as soon as I can get my head around it.

First College Days . . .

Two weeks ago, TJ started college. Though it’s close to home, he’s living on campus. In the last fourteen days, he’s had to get himself up and to class, find the dining hall during mealtimes, manage severe weather (which would have sent him over the edge a few years ago), a fire alarm (back over the edge!), and countless new people, places, and routines. He’s done well.  

I’m excited, terrified, and mostly dumbfounded.

How did he get here?

When diagnosed just before his third birthday, our pediatrician told us, “Don’t worry. He’ll probably hold a job someday.” He was, of course, misguided (and probably a little jaded by his own experience with his recently diagnosed grandson), but we had no one to suggest that the doctor might be underestimating him. So we were terrified. But I’ve been accused of being an optimist. And though all empirical information we had suggested otherwise, I had hope. And faith.

Sixteen years and many, many hours of TJ-driven extra work, to say he exceeded expectations grossly understates his progress. He’s absolutely crushing life and I don’t expect him to stop any time soon!

To ABA, or not to ABA . . .

Fourteen years ago yesterday was TJ’s first day of ABA, a/k/a “playing the work,” as he described it. We saw almost immediate progress on some of the worst behaviors, most born of frustration at not being able to make his needs known. He made slower, but steady, progress in overall communication and as he did, we saw his confidence grow. One thing fed off another and within a couple of years, he was (relatively) ready to start kindergarten.

Back then, we’d never heard of “BCBA’s” or “RBT’s”—instead, ABA therapy was a hit-or-miss almost “shadow” therapy provided by well-meaning adults who just learned as they went along. This was before states mandated insurance coverage for ABA and most plans didn’t cover it, so fewer people could afford it, so there were fewer options. And it was crazy-expensive!

Now ABA is as available as more traditional therapies like OT and SLT. But criticism of ABA has grown almost as fast as its availability.

Help an older mama out—what do you think about ABA? Has your child benefitted from it? Please share your experiences, good or bad.

A disturbing post about “disruption” in the classroom.

I recently read a Twitter post by a self-described “public school veteran” that went all over me. (We’ll call her “PSV” for short.) PSV’s thesis: “Disruptive students steal education from others, but they never make amends because they cannot restore learning. So the just thing is to prevent the theft by removing them from the classroom, no?”

My response to the post: “My son has autism and while not intentionally disruptive, I’m sure his learning difficulties and inability to regulate, especially early on, appeared that way. Would you deny autistic children the opportunity to learn alongside their peers?”

The response: PSV “mostly” meant those who are “knowingly rude talkers.”

Not exactly the show of support I’d hoped for! Bottom line: In this teacher’s view, if a child is subjectively “disruptive,” whether because they have learning difficulties, are chronically hungry, become overstimulated, are ill or sleep-deprived, or just think differently, they don’t belong in a general education setting? It stuns me that people think that way, particularly a “veteran” teacher.

Setting aside all other reasons kids might be “disruptive,” those with autism spectrum disorders alone make up almost one-third of elementary school-aged children—the latest CDC numbers estimate that 1 in 36 eight-year-olds has some kind of ASD. Add to that kids who have other learning differences or disabilities, those whose home lives leave them fearful or neglected, and the myriad other random reasons why kids might have difficulty in a classroom, and you’ve probably pegged half the population.

I hate to break it to this “veteran,” but the US government guarantees EVERY child a “free and appropriate public education” in the “least restrictive environment.” As it should. Who are we to decide who can and can’t learn, or shouldn’t be given the opportunity?

I suspect PSV’s beef has more to do with the effort required to teach different kids differently—to meet kids where they are—than the professed hand-wringing over the “theft” of education. And it’s a safe bet that the kids aren’t the problem here.

What do you think? Does your initial reaction mirror mine? I’d really like to hear your experiences with public school teachers—the best and the worst. (And for the record, most of TJ’s teachers were beyond amazing—I am forever grateful to each  one!)

Things change.

Friday evening, we took the whole crew to dinner at a favorite barbecue place, one we frequent every few weeks. TJ always orders either a pulled-pork sandwich or ribs. The place was packed when we arrived and apparently had been all evening. They were out of pulled pork and—you guessed it—ribs.

Saturday, we went to Rosa’s and though we ordered them plain, TJ’s tacos came with lettuce and tomatoes and were topped with sour cream.

I remember clearly when either would have ended the evening. I can’t tell you how many times my husband or I took TJ outside to manage a meltdown while the rest of the family ate. Or how often we just threw food into to-go boxes and packed up the whole crew. It was exhausting and demoralizing for us. And at least as hard for our other kids. And for TJ—particularly when he became aware that his behavior impacted others, he’d get through the meltdown only to be upset all over again that he’d hurt someone’s feelings or ruined their plans.

But no more.

Friday, he just decided to try something different, ordered brisket, and cleared his plate. And he did it on his own—I didn’t realize there was a potential issue until the meal was over. Saturday, he just scraped the veggies and sour cream off as best he could, then ate them with no complaint. Both evenings were wonderfully enjoyed with family. For a little while, I did not consciously think about autism.

Most parents would read this and think, “Big deal! He’s nineteen—of course he should just roll with the flow!” But if you know autism, you get it. i’m just glad I’m reminded again how far we’ve come.

So hang in there! Things do improve with time. You may not see it this week, this month, or even this year. But there will come a point where you can look back and see progress. And be encouraged.

What issue has your child overcome? Big or seemingly small, please share in the comments below.

New year, new fear.

I’ve spent some time on autism parenting discussion boards the last couple of days and one thing is crystal clear: the beginning of a new school year—new routines, new teachers, and new expectations—cause angst among those of us with kids on the spectrum. Some common themes:

• Showing up to “Meet the Teacher” events where a teacher had not only not seen a child’s IEP, but was not even informed that the student has autism.

• Removal—without notice, much less justification—of supports that had been in place last year.

• Really lousy first experiences. Take a child with sensory processing disorder to a new place where new kids are excitedly bouncing around and making noise is a recipe for a meltdown.

• Confusion over lines of communication. Who—the teacher, an administrator, a SPED representative, etc.—should a parent contact about accommodations, either needed or missing?

• Fear. That the new teacher won’t embrace your child the way last year’s did. That the school bully is in his new classroom. That given communication difficulties, he won’t be able to make his needs known. Or worse, that he won’t be able to tell parents that his needs aren’t being met.

But there’s one common positive—those parents who voiced their frustrations were met with empathy and support and sometimes, helpful suggestions based on others’ experiences.

I hope this site is a place where you can raise issues, seek assistance, or just vent—without the worry that someone will pop off and make a bad situation worse.

There’s a lot of us. Let’s hold each other up as best we can.

“In our corner or out of my way!”

Over fifteen years, TJ was in four very different school settings—districts ranged from tiny to one of the largest in Texas. Three schools were public, one private. But every educational setting had one thing in common: size, experience, and resources were less than determinative. Instead, TJ’s success and progress turned on the “want to” of the school’s administration. When support for our kiddos comes from the top, everyone pulls the same direction. Without that leadership, however, all bets are off.

In our case, one administrator fought tooth and nail to help TJ overcome the obstacles that precluded his full and productive participation. Most others would have given up, but this guy never blinked. He just kept encouraging TJ (and us) and over time, TJ rose to the challenges. I believe this man changed TJ’s life—sounds melodramatic, I know, but the right person in the right place and time can make all the difference.

The opposite is true as well, though—draw someone less-than-willing to be part of the solution, and he or she can torpedo your best efforts. Three particular administrators come to mind, and each at least squandered the opportunity to help TJ progress. One was clueless—he meant well, but had no real understanding of autism and no desire to learn. A second couldn’t be bothered, she simply didn’t do “extra” kids, mine included. The third was actively hostile—she set him up to fail. (His classroom teacher confirmed as much years later).

In my opinion, none of the three had any business working with kids, period, much less our most vulnerable ones. But I didn’t always have the luxury of avoiding them—such is the nature of public education. In each case, I made my position clear: “Get in his corner or stay out of the way.” Two of the three agreed to disagree, and we just worked around them. While I couldn’t count on their support, they did not actively derail my efforts to work with teachers and therapists to help TJ prosper. (We removed TJ from the third situation—she meant harm, although I’m sure she didn’t see it that way. She wanted all kids on the spectrum out of her general education classrooms and preferably, off her campus.)

It’s a pretty good guideline.  Learn to let the clueless and neglectful alone, as long as they don’t actively impede your child’s progress. Those who fail to recognize these special little minds shortchange themselves, and I can live with that. But those who actively oppose our kids’ success? We will fight and fight hard. And no one knows how to fight like a special needs parent!

Over the next few weeks, I’ll share our experiences with IEPs, ARD meetings, and general navigation of the public school system. I hope our lessons learned—many the hard way—can help you help your child. Please add your comments below, along with particular questions or topics you’d like me to address, and I’ll do my best.

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First Interaction With The Police

TJ has been driving, within a few miles of home (we’re working on Interstate driving) for more than a year. A couple of months ago, we helped him buy his first car.

The other night, he drove into town to pick up pizza for dinner. The left-turn out of our favorite pizza place is across the street from the junior high and one of the least protected in our little town. An event ended at the school, and a sheriff was directing traffic. TJ turned left and had to slam on his brakes–he didn’t see the sheriff until he’d turned out. The sheriff marched over and motioned him to roll down his window, which he did. “What does this mean?!” he demanded, holding up his hand. “Go slow and be careful,” TJ said. The sheriff nodded and waved him on.

He didn’t lose his cool, just calmly drove home and told us all about it. May not seem like a big deal but I’ve always worried about how he’d react. Now I know he’s got this, just like so many other things.

Just Getting Started

Today, I attended my last parent-teacher conference. TJ graduates in six weeks, which is all kinds of unbelievable. He’s ready. I’m not sure I will ever be! But I’m so,

so proud. I couldn’t help but remember my first parent-teacher conference, which was basically an ARD meeting. Topics of conversation were “recess is a great time for him to practice social skills,” “we’ll continue to work on his speech—his first goals will include making 3 word sentences,” and “we’ll encourage him to at least walk inside the gym.” At that time, any cavernous space—a gymnasium, a church sanctuary, or even a hardware store—would send him into a tailspin. Even if it was empty; it was more than just the sound.

But today! Today we heard, “TJ is such a joy to have in class—he participates, supports the other students, he works hard and takes pride in doing well . . . and he knows more about 80s’ music than most of the faculty combined!” They asked if he had decided whether to live on-campus for college next year or to commute from home.

That he has both options—he’s capable of living independently (at least “college” independently) and of driving himself back and forth, parking, and getting himself to class on his own—just floors me.

I’ve said this before and I’ll probably say it a hundred times more—I never would have imagined this day! He’s come so far and he’s just getting started!

Mom, I Think I Have An Emergency

Most of my husband’s family—5 of the 6 siblings, plus spouses and four of their kids—are joining us for the eclipse on Monday. They are predicting an extra million people in the DFW area this weekend, and let’s just say that the stores are not prepared. So last weekend, I asked TJ to drive to the grocery store and get a few things—water, Dr. Pepper, chips, and toilet paper (nightmares of COVID are a real thing!)

He called once from the store—I had written “3 – 12 pks Dr. Pepper” and he wasn’t sure if that meant “3 twelve-packs” or “between 3 and 12 packages”—and told me he was almost finished shopping. (He came home with everything I asked for, plus a couple of cartons of ice cream, which was a really good idea.)

He called again, and when I answered, said, “Mom, I think I have an emergency!” I’m thinking he had a wreck, got pulled over (yes, he drives too fast!), or the like. He said, “when I was loading the groceries into the back of the car, I laid the keys on the inside and then when I closed the hatchback it locked.” I asked him to walk around and try all of the car doors—I drive a Mini and it’s . . . quirky sometimes, especially the door locks. He did, and the rear passenger door was unlocked. He said, “Okay, Mom, I can just climb over the seat and reach the keys. Be home in a few minutes.”

No panic! A clear, understandable explanation of the problem. The wherewithal to call me and then, when he realized he could, solve the problem himself. I was amazed! I told his older sister what had happened later and she said she wasn’t sure she would have been that calm. And I might not have been either!

Twice this week, memories of meltdowns significant enough to make my social media accounts have reminded me of his not-that-long-ago reactions to stressful situations. Reminding me, yet again, how far he’s come.

Here’s What DIDN’T Happen

Today at school, TJ’s principal laid down a new law: Because a couple of kids had been hassling one of the kids at the lunch table (apparently an ongoing problem), he was assigning seats for the rest of the year.

TJ looks forward to lunch. He sits with his friends and they talk movies, pets, and just life. The thought of sitting with strangers was more than he could handle. It wasn’t fair, he thought—he hadn’t been part of the meanness—so why should he be punished? He got frustrated. He began to get upset. He marched himself down the hall to the counselor’s office and said, “I’m having a hard time and I need your help.” And she talked him through it, then he went back to class.

But the thought-loop continued. In his next class, it got to be too much all over again. He asked to be excused from class, went to see the counselor, and worked through it again.

This time, he made it until the last period of the day. Again, he got caught up in the thought-loop: “not fair, I didn’t do it, shouldn’t be punished, sitting with strangers, not fair . . ..” And back to the counselor he went.

Here’s what didn’t happen. He did not have a meltdown. He did not cuss anyone out. I didn’t get a call from the school. And it didn’t follow him home.

Even two years ago, all of the above was not only possible, but probable. I never would have believed he could make so much progress in such a short time. But he did.

These kids are amazing!

I’m Proud Of You

Yesterday, I wrote about TJ’s thoughtfulness—his care for my feelings before his own angst caused by a rough afternoon at the dentist. Yesterday was remarkable for a second reason as well.

I remember well the early days at the dentist. The screaming, cussing, and general “losing of the shit.” The timing questions—better to let him know in time to get himself steeled for what’s coming, or does that just give him more time to be anxious?

I was so distracted that I’d forgotten to even ask him how it went. Right before he went to bed, he texted this: “Procedure went great. Felt a bit of frustration and anxiety!”

My response: “I’m proud of you! You’ve come a long way.”

In reply: “Thanks. I am very proud of myself!”

As he should be.

Empathy

Two things of note happened today. First, I got some really bad news about a loved one’s health. TJ was with me at the time, and he knew I was upset.

Second, he had a dentist’s appointment. Two cavities. And even with nitrous, he was in for a rough afternoon.

So I went to the hospital. TJ went to the dentist. A few hours later, I got a text: “Mom, I have something that will cheer you up! They’re going to make a Despicable Me 4 and Gru has a kid.”

I answered: “Awesome! And just hearing from you cheers me up!”

And it did. Here he was, having just been through the wringer at the dentist, and his only thought was to cheer me up. To all those who say kids with autism have no empathy, I say, “yeah, right.” TJ is the most naturally thoughtful of my children. He’s pleased to go eat “wherever you want to go” and refuses to take the last piece of pizza or the last cookie. He’s the one that cautioned me when he noticed the drain loose in our shower – “I don’t want you to hurt yourself, mom.” He’s got the biggest heart. And doesn’t have a mean bone in his body.

Together

The CDC reported that in 2020, 1 in 36 8-yr olds had been diagnosed with autism. That’s almost 3% of the 8-yr old population. Logically, then 3% of parents find themselves raising an autistic child. I could look up the number of parents, do the appropriate calculation, account for those with multiple children on the spectrum and . . .

But does it really matter? (And do I really have to do math?)

The point is: there’s a lot of us. And although our children are each their own unique selves, they likely share common challenges. Difficulties with communication, self-care, and emotional regulation, among other things, seem to be universal. As parents of these special kiddos, we share the role of helping them overcome these challenges.

And we also share triumphs—the small, seemingly inconsequential things that to parents of these children, are anything but ordinary. The four-year old who finally says, “Mama.” The seven-year old who, after three years of effort, finally uses the toilet independently. The picky eater who finally, voluntarily tries a new food.

I’ve logged more than fifteen years as an autism parent. Along the way, other parents—not doctors or scientists or even therapists-- have been my greatest source of comfort and steady support. We’re part of a special club. We “get” what others never will. This site is dedicated to my son and all other children struggling to thrive in a world not built for their unique minds. And to their parents, who comfort, encourage, and advocate endlessly for their futures. I hope you’ll share your stories, so that we can ease each others’ fears and celebrate the joys. Together, we can guide our children to reach their full potential, whatever that may look like.