The stories we keep

There are certain stories I need to hear. Like the one about the young boy diagnosed with autism who didn’t learn to read until he was in 3rd grade and is now on the honor roll in high school. And the one about the OT who had multiple learning disabilities, including dyslexia, who read at a 7th grade level in college and went on to, well, become an OT.

There is a version of the story for each of us that fills our hearts with hope and reminds us to never lose faith.

Lately, I’ve been thinking about all the extra work and therapy we do with our son. Now that he’s getting older, gaining a more mature sense of self-awareness, I have to ask myself the question: What message are we sending him with all this intervention? Are we telling him—not in words, but certainly through our actions—that he doesn’t meet expectations? That he isn’t fast enough or strong enough or smart enough? That all these things need to be fixed.

He’s made comments recently that give me pause. I have never had to worry about my son’s self-esteem, and yet, maybe I’m fooling myself. He takes such obvious pride in the things he does well, and we go to great lengths to compliment and praise and motivate. But I wonder. What about the things he knows he can’t do? How does he feel about those things?

When our kids are young, therapy is play. It’s fun and so incredibly cool to have a happy, chirpy grown up playmate with lots of great toys willing to spend an hour in the ball pit or doing art projects or letting you roll Cheerios around on your tongue. But as they get older, the dynamic changes. Therapy is more work than play and soon enough it becomes a question of “Why do I have to do this when none of my friends have to?”

We have never, not once, said anything other than “Everyone has to work harder at something” or a variation on that theme. It is our mantra. We don’t talk about autism or PDD-NOS—and maybe that’s a mistake—we speak instead of differences and challenges and how everyone has their cross to bear.

When I see how my son struggles in the classroom, recognize the things that hold him back, I tend to get frantic. I think, if only he could learn to do X, everything else will be fine. But there’s always another X. And I need to take a step back.

I need to remember that his story has yet to be told. There are countless pages between this and the end. I’ve said it before: He’ll get where he needs to be, on his own terms and in his own time. And I’m going to support him in that. 110 percent. 110 million percent.

But the older my son gets, the harder it is for me to keep things in perspective. Every blip feels like a bump. Every decision—therapy, school, sports, birthday parties, playdates, doctors appointments—it all feels so weighted.

There are stories I need to hear—like the one about the boy who couldn’t read until he was in 3rd grade. These are the stories I need to keep. Because they remind me of the simple fact that my son’s story has yet to be written.

 

Where do we go from here?

I wish I could open up the super-highways in his brain, create a smooth and even flow of traffic. He stumbles over a word, literally tapping his head to shake it loose. “I know that word,” he says. “I just don’t know it now.”

Driving home from religion last week, he asked me,“Mom, you know that story about that person who visited the three sheppard children? I don’t remember who that person was.”

“You mean the Blessed Virgin? Mary?”

“Yeah, that’s the one.”

I wonder what he retains. What bits stay with him. Usually the things he shares with me are obscure, like the story of the Miracle of Fatima or the fact that subway trains are the lifeblood of the city—and he’ll use that word, lifeblood, as though it were a common word for six-year-olds.

The truth is, I don’t know how his brain works. I know that there are times when I think he is one of the wisest people I know, and there are times when he can’t tell me that 2 + 2 = 4. I lose a lot of sleep wondering what all this means. He’s already behind the curve, he isn’t reading. At least not consistently. Lately, that seems like our biggest challenge. Consistency—across the board.

When I think about Friday’s IEP meeting, the thing that unnerves me more than any other is that I wavered. I wavered in my belief and my faith in my son. I let myself question the big important stuff you are never supposed to question about your children—like is he smart? and, can he learn? It’s going to take me a long time to forgive myself for that.

The thing about these meetings, they are disheartening under the best of circumstances. And even when you get the outcome you were hoping for, it is never the outcome you want.

 

It’s all relative

In honor of tomorrow’s IEP meeting, the percentiles are marching in. And they aren’t pretty.

• 11th percentile for speech articulation
• 5th percentile for body strength and agility
• 8th percentile for body coordination
• 5th percentile for visual perception
• 5th percentile for motor coordination
• 7th percentile for fine manual control

Age equivalence of a 3.5 year old, global physical delays, difficulty in coordinating visual and motor systems…

But this is why we are a good team, we three. When I shared these grim statistics with my husband, he turned to me and said, “Yeah, but when it comes to love, he’s in the 1000th percentile.”

Now that’s a number worth holding on to.

 

You can swim

My son has been troubled by one particular bad dream for the last two nights. In his dream, he is holding on to the outside of a sinking ship and he is very scared. He’s quite clear on how this dream starts out good and then turns bad. I don’t know where this dream comes from, but maybe it comes from listening to the song Titanic by Dan Zanes. GP knows the story of the sinking ship from the song and from The Magic Treehouse book #17, Tonight on the Titanic, by Mary Pope Osborne.

It’s been about a year since we read the book together, but this past weekend, we popped the Zanes CD into the car and listened all the way from here to the east end. A trigger? Maybe. But he can’t let it go. The bad dream has colored his conversations for two days.

Coming back from spring break has been a bit bumpy. There’s been a lot of drama and some tears and a fair amount of anxiety. We’ve stopped doing the eye exercises at home, and we are this close to quitting altogether. The developmental optometrist called last night to encourage us to stick with it for three more weeks of in-office therapy sessions and then a re-evaluation. I understand why he wants us to continue. He wants to learn something—have the means to compare and contrast—and he doesn’t want to lose the time and effort we’ve put into it so far. But it’s a struggle. And I already told my son we could stop.

Friday is our IEP meeting. I think it will be a good meeting, but I won’t really know until all is said and done. I have some early feedback that the district is on board with our requests and I’m hopeful that the meeting will involve little more than working out the actual logistics. I want my son in a mainstream classroom for 2nd grade with a one-on-one aide. He needs the support academically, but also socially and I’m hoping that this plan will be approved. It’s a little tricky though, because even though this year didn’t start out well, he’s settled in and currently negotiating the classroom with very little support. A one-on-one is more restrictive, but I think it’s fair to say we can make a strong case for our point of view. His teachers and the district autism consultant support the idea—but I’m still keeping my fingers and toes crossed, just in case.

Most of the time, I know we are going to be okay. My son is an amazing kid. He has a great life. His diagnosis is not going to weigh him down. PDD-NOS. What exactly does that mean? My guess is that as he grows and matures and learns to cope with and compensate for his delays, it won’t mean much. At least not to us.

But as we stand here, in the muddy waters of being six and having “issues” and needing therapy and support and lots and lots of handling with care, I can sometimes lose sight of how okay everything really is. I let it pull me down—I feel like I am the one hanging on to the side of that sinking ship. And I make it harder on myself than it needs to be.

But I know how to swim.

And that is what I’m going to tell my son about his dream. It’s okay. Let go. You can swim.

 

Mind the gap

Boundaries can be tough. Sometimes they are clearly marked, painted yellow, like the line across the train platform that reminds commuters to “mind the gap.”

Other times they are not so well-defined. For kids like my son, knowing when to draw the line, under what circumstances certain words or behaviors are okay, and under what circumstances they are not, can be extremely tricky.

In recent weeks, we’ve been using a word around the house and with each other as a term of endearment or to convey happiness or coolness or silliness. The word is baby. As in, don’t worry, baby. Or, okay baby. Or even, yeah, baaabbbbyyy. And in all this time, it never once occurred to me that baby could be bad.

Today, my son got in a bit of trouble for calling one of the girls in his class a baby. Thing is, I don’t think he called her a baby. I think he called her baby. As in, okay, baby, let’s take out those math books.

Regardless, it came across as name-calling. Either he couldn’t articulate the context or no one asked. He had to apologize. It wasn’t that big of a deal and he wasn’t even that upset about it, but it made me stop and think.

Some things are easy to teach. Others, not so much.

 

When is a funk just a funk?

The counterpoint to all this growth and development, is a complete system breakdown at home. This weekend he blew through the house like a hurricane, agitated and restless, too hungry, too tired, too everything. He bounced from the tiny TV in the office upstairs to his room and his toys, back to the TV and then downstairs, outside, back inside—unable to settle, unable to find his place.

He is edgy, fragile, wild—the frustration is evident, even this morning.

I don’t want to read too much into this. I won’t speculate as to what is upsetting the balance. It could be spring fever or a developmental burst. It could be the vision therapy or simply the fact that the new TV won’t arrive until midweek. It could be a growth spurt or another cold coming on. It could be any number of things.

A funk is a funk. We all have them. But as the parent of a child with special needs, I have spent a lot of years looking for clues. Something is not right?—let’s figure out why. Let’s dissect it and take it apart and analyze the hell out of it.

But sometimes a funk is just a funk.

I’m thinking about trying something new. I’m thinking about telling him to get over it already.

(I’ll let you know how it goes.)

 

Keeping the force with us

Yesterday’s Star Wars birthday party was a swirling tornado of light sabers and small bodies hurling themselves through space, and my son—holding himself somewhat apart, out of the mayhem.

It was a beautiful day. The kids were quickly moved outside into the large yard where their energy could be more easily dispersed. Not so long ago, this party would have been impossible for GP to navigate. But yesterday he did just fine. Like at the zoo, there were a couple of near misses. A couple of very minor breakdowns. But like at the zoo, he stood back, choosing not to participate in the party games, but to play alone in the house.

There was a time when this would have upset me. The fact that he wasn’t participating. But there was also a time when his participation would have led to a complete meltdown. He’s growing up. Learning to figure out what he needs. And I have to respect that. It’s not about what others think (why doesn’t GP come outside with the other kids?) or about what I think (is he okay? is he having fun?). It’s about what he needs and what he wants. When it was time for the kids to eat and to sing and to open presents, he joined right in, taking his place on the grass in the late afternoon sun.

We’ve known the birthday boy’s family since moving to Mayberry a few years ago. They include us in all their events and invite us to tag along on nearly all their outings. Yesterday, we were asked to stay for the family dinner after the kids party ended. James got off the train one stop early and walked over to meet us.

As the birthday boy and his brother and their cousins ran around in Star Wars costumes and organized baseball games in the street, GP amused himself in the big backyard of toys. And when I looked over and saw how he was dragging his feet, I told him we needed to get ready to say our goodbyes, even though most everyone was still eating dinner and the gigantic cake had not yet been served.

If I’ve learned one thing in all these years of parenting my son, I’ve learned when to leave. We are very often the first ones out the door. But we’re learning not to let that bother us. Because saying goodbye with a smile and a hug beats the hell out of tantrums and tears.

 

When to say when

I’m not sure yet how to process what’s going on. We’ve been in such a good place. School. Homework. Therapy. Birthday parties and playdates. Soccer. All good.

But in the last week or so, there’s been a subtle shift. A little more anxiety about school. Some complaining about homework. And a whole suitcase full of resistance to the eye exercises and vision therapy. What should take about 15 minutes is becoming an endless battle of will.

And here’s what I don’t know: Is this the point where the sensible parents put an end to everyone’s misery and say enough with the therapy that makes the little boy unhappy? Or, is this the point where the stubborn yet devoted parents say we. must. keep. at. it. until the little boy understands that quitting is not an option?

(But quitting is always an option. Everyone knows that.)

It seems to me that there is a point where the novelty of the activity wears off and the whole of it becomes a dull routine and there is a lot of bucking and kicking and jockeying to get the upper hand, until things settle back down. We always hit a wall with therapy. Any therapy. The question is, do we keep going, find a way over or around, or let it go?

In some ways, the wall is a pretty good place to stop, look, and survey the situation. In this case, what do we hope to gain if we persevere? Even under the best of circumstances, do we have enough time between now and boarding a plane for California to effect a true change with vision therapy? Is this time and money well spent?

I wish I knew.

One of the hardest things about therapy is this: knowing when to say when. Even harder: not feeling guilty for saying it. As parents of a child with special needs, we walk a fine line. Intervention is key. But if we listened to and prescribed to every intervention that has been recommended for our son, we wouldn’t need a house to live in—just a car to take us from appointment to appointment, from specialist to specialist. Clearly, we have to draw the line somewhere.

Ah, but where? Where do we draw the line?

And why does it feel like every failed attempt, every opportunity passed on, is a strike against our child’s future? Am I the only parent who lives and dies by the breadcrumbs of hope tossed out by thoughtful professionals trying to make a difference in our son’s life? I’m not even talking about marginal or questionable stuff here. I’m talking about tried and true things, like occupational therapy and physical therapy and orthotics and speech and tutoring and social skills groups and, yes, even vision therapy.

Here’s what I have a hard time letting go of: the developmental optometrist telling me that because of our son’s ocular motor delay, reading will be a tremendous challenge. Which, in my mind, translates to: school will be a tremendous challenge. Which, in turn, becomes: his frustration level will peak, he will shut down, and he will never get an education.

See how slippery the slope is?

So if we walk away from vision therapy today, even with the idea of revisiting it in six months or a year, how far behind will he fall? Is this a make or break therapy? He’s six years old. Is anything make or break at six years old? And if we walk away, will our son learn that by complaining and pitching a fit, he won’t have to do the hard stuff?

I think we’ve done a great job of keeping our heads and making sure he has plenty of downtime and kidtime and just-be-him time. But we’re standing here now, at the wall, wondering whether to keep going or walk away.

And I really don’t know what to do.

 

An all-too common cold

When my son’s OT turned to me yesterday afternoon and said, “he’s getting sick,” things began to make sense. I was wondering why he was so quick to burst into tears at vision therapy, why he seemed just a bit off. I almost hated to acknowledge her words because of all the things we have on the calendar in the next few days. So we made it an early night, skipping our review of spelling words and even a story before bed. But within an hour he was up again, so I brought out the cold medicine and that did the trick. Not a peep until morning.

He’s home from school today. Not because the cold is so bad, but because it just didn’t feel right to push him. Sometimes a day of rest will turn things around—and we need to turn this around.

I don’t have an actual tally, but it seems like he’s missed a lot of school this year. There were a couple of mental health days and more than a few actual sick days. Days where school was simply out of the question and days where I’m sure he could have gone to school, but we opted to keep him home. One of the things I’ve learned about my son and his particular set of challenges is that a cold can throw his entire system out of whack. I was telling someone last night, it’s like he’s a delicate sports car. You don’t want to take him out on the open road when all his parts aren’t in top working order.

So he’s home today, not so much because of the severity of the cold itself (no fever, a few sniffles), but because he burst into tears when he couldn’t put his slipper on. It’s physical, yes, but the emotional piece, the coping skills, the ability to shrug things off, completely disappears when his head is foggy and clouded over. And attending school in that condition is counterproductive. For everyone.

Maybe I’ve indulged him because I feel overly protective, because the transition to first grade has not been easy, because I see how hard he tries and how hard he works, and I think it makes sense to cut him some slack.

Anyway, I realized these days at home with mom have become just a little too familiar when he turned to me after breakfast and said, “Do you know what I love about having a cold? I love that I get to stay home and have extra computer time.”

Sigh.

 

All I have to say

I’ve spent the first few days of Autism Awareness month blogging about nothing important. I should say, deliberately blogging about nothing important. The problem I’m having is that with all this focused attention, all eyes on us, so to speak, I’m having a hard time putting words to what I feel, what I think about autism in our lives.

One of the things I know is that I can’t speak for anyone other than myself. I can’t speak for my son, for my husband, for our families or friends, or for any of you who walk a similar path. As I read other blogs and listen to some of what the media is saying, I am overwhelmed by the diversity of thought and opinion. The polar extremes of the spectrum itself.

I am reminded that the inherent challenges of autism have to do with perception—from the standpoint of those who are diagnosed as they struggle to navigate the world as they see it, and from the perspective of the rest of us as we bang heads over what autism is and its underlying causes. The varying points of view are staggering, from cause to remediation to therapy to education. Vaccines or no vaccines. The environment. Genetics. Epidemic—yes or no?

And the definition itself. What is autism? For months I have told myself and anyone willing to listen that autism is not one thing. But what does that really mean? It’s behavioral, yes, but there’s more to it than that. A lot more.

There isn’t a piece of my son’s world that isn’t colored by this in some way—it is, as his diagnosis attests, pervasive. And yet—most of the time, it sounds worse than it is. Most of the time, I can say with conviction, life is good.

I sometimes feel that my son’s greatest challenge will be getting through school. But do I really think, as I’ve often said, that once he’s an adult, once he’s out there in the world at large, it will be easier for him? So much of what I’ve read this week points out how difficult it is for autistic adults. How the lack of support and services and jobs creates a new level of challenges for those who have crossed that imaginary threshold, leaving teachers and therapists and the educational system behind.

Is that how it will be for my son? Or will he grow up to lead a relatively predictable life as a somewhat eccentric and slightly out of sync adult? After all, isn’t everyone just a little bit weird? Aren’t we more accepting of differences as adults than we are as children? Maybe. But probably not.

A friend called the other day to say in a very tongue-in-cheek sort of way, “Autism is the new fashion trend. Everyone is talking about it.” And it’s true. They are. It’s just me who doesn’t know what to say. I’m sitting here on the fence wondering which side to come down on. I can’t find the words to express what this means to me, in a very personal, very real, very down-to-earth way.

There’s no doubt that my son’s diagnosis is on the spectrum. But lately, I feel a little disingenuous when I say, “My son has autism.” Why? Because, god help me when I say this, things are going very well. We’re in a good groove. He’s happy. He’s working hard. He’s remediating all over the damn place. And so I’m back to thinking, “Hmmm. Maybe it does just go away…” But I know it doesn’t. Still, how to explain the inconsistencies? The moments of absolute connection?

I wonder, is he a child who has autism? Or is he a child who has differences? Is there a distinction between the two? Does it matter? How can the pediatrician call it “a slow start” when the neurologist defines it as “PDD-NOS”? Why do educators insist on calling it “a behavioral issue” and “a learning disability”, while the OTs call it “sensory processing disorder” and the therapists call it everything from dyspraxia to hypotonia? Clearly, this isn’t the kind of thing you can put in a box and tie with a ribbon. But why would you want to?

And what does awareness mean, anyway? What are we supposed to be building awareness of? Because there’s too much of it, too many pieces, too many stories to shove into a month’s worth of days. Shouldn’t this be about changing the way we think, changing our fundamental approach to respect and acceptance and differences? What is the goal, here? Is it enough to say the words and wear the ribbons and listen to the news? Not really.

I know, one step at a time. Awareness fosters understanding—in a perfect world. But our world is far from perfect, and I can’t help but think about all the fear and the misinformation and the stigma and the despair that surrounds this word that we can’t really define, that means so many different things to so many different people. How do we come together, lift each other up, and accept the inconsistencies? How do we embrace our differences? And when will we stop trying to shove people into tiny little boxes, and instead give them the support they need and room to grow?

These are the questions I am struggling with a few days into Autism Awareness month. And I don’t have any answers. I don’t have any wisdom or theories or advice to share.

I simply have this boy. This funny, fantastic, exasperating, infuriating, wonderful, wild, quirky, sweet and fabulous boy.

 

The high cost of therapy

We are currently into our second week of vision therapy. And it’s going better than I expected.

Tuesdays are a little hectic and rushed, but so far, we are managing to get from one place to another without too much drama. The truth is, he’s kind of into it—not the vision therapy, per se, but the free pass on Tuesday night’s homework, and the special snack in the car, and the extra time at the rice box for doing a good job at OT. Not to mention the possibility of dinner out on the way home.

We talk a lot around here about solving problems. When my son gets frustrated or angry about something, I will often ask, “Okay. What can we do to solve the problem?” And then I’ll say something like, “Should we cry?” and he will say, “No.” And then I’ll say, “Should we stomp our feet and throw things?” and he will say, “No.” And then I’ll say, “What do you think we should do?” and he will say, “Talk. Figure it out. Work together.” (Months of work, my friends, to get to this dialogue.)

So, when he became extremely frustrated and upset last week over the eye exercises he is supposed to be doing at home, I said, “What do you think we should do? What will make you feel better about doing these exercises?” And he said, “Hot Wheels.” And I said, “Well, that’s a lot of Hot Wheels. Maybe we can think of something else?”

Then it hit me. Money. The perfect solution. So James and I offered him the chance to earn quarters for doing a good job. “This,” I said, “is better than Hot Wheels. You can use money to buy any toy you want. It’s perfect.”

And because he is a master negotiator, he convinced us that his in-office therapy sessions are worth a dollar, and his home exercises are worth a quarter a day.

On Tuesday, however, he increased his price. He was given a new exercise to do at home. So he bumped his day rate to 50 cents.