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.

 

One step at a time

Yesterday I met with my son’s teachers to preview his placement for next year. Though the meeting was good, I walked away feeling sad and discouraged, wondering all over again how to help him make the academic leaps that will enable him to keep pace with his peers.

His test scores are low, perhaps not a true reflection of his capabilities or the depth of his knowledge. When they gave him the Wechsler Individual Achievement Test-II, there were entire sections that he simply declined to complete, telling the instructor that he “couldn’t” do the work. He said he couldn’t write his last name (he can), that he didn’t know how to add two numbers (he does), and he was unable to correctly write the letters of the alphabet (which, by the way, he is more than capable of doing).

So, what does this tell me? I don’t know. But my gut feeling is that it goes beyond not testing well. My concern is that we are heading into that dangerous place called Low Self-Esteem. I think he’s smart. Smart enough to know that he is often two or three steps behind, that his classmates have closed their books and moved on while he is still copying the first sentence off the blackboard.

I think the set-up and the structure of a traditional classroom is going to continue to create challenges for him, regardless of the accommodations and modifications put in place by his IEP. But I don’t know what the alternatives are.

I got an email this morning from a family friend, someone I haven’t seen in years, but who I thought might be able to help us this summer. I had gotten in touch with her in a roundabout way, remembering only belatedly that she is a SLP. She sent a lovely note and a long list of names.

We have a lot of work to do. But I will not give up. And I will not let my son give up. Because it’s out there, somewhere, the help and the support we need. The things that will make a difference.

And the family and friends and teachers and therapists who will lift us up and carry us forward when we believe we are simply too worn down to take another step.

We just have to keep moving. One step at a time.

 

A few things on my mind

It’s oddly quiet here this morning. My brother is gone, my son is back at school, my husband is on his way to Columbus, Ohio. I almost don’t know what to do with myself.

I know I said today was going to be a “whirlwind day,” but the plan has already changed. I cancelled this afternoon’s OT session and in a little while when the office opens, I’m going to cancel vision therapy, as well. GP spent most of the night sneezing and blowing his nose—hard to believe that after all that rest and isolation, he’s actually coming down with a cold. I sent him to school only because he was happy and cheerful and expecting to go. We’ll see how the day progresses, but it doesn’t make sense to me to start a brand new therapy protocol when he’s under the weather—even if it is simply a cold.

In a couple of hours, I have a meeting with his teacher to discuss his placement for next year and our upcoming IEP. I am woefully unprepared. I didn’t want to miss this meeting (another reason why I went ahead and sent the boy to class) because I have to know if we are on the same page, pushing for the same services. I need to know where we stand so I can figure out how to prepare. In some ways, these “pre” meetings are more important than the formal sit-down. In our district, by the time you get to the big table and the committee, everyone is usually already in agreement.

This has been an interesting school year. I’m pretty sure I’ve learned more than my son, and yet, I still don’t know how to move forward. I was thinking again about whether we should pursue finding a tutor to help with his reading over the summer. Last week, the eye doctor had me convinced that a tutor is like putting the cart before the horse. If he can’t control his eye muscles to track and scan the page properly, then the best tutor in the world won’t make a difference.

But I have this theory. I don’t think his vision is as bad as the doctor says it is. I think he’s close to learning to read. And yes, until his visual skills improve, reading is going to be a difficult task. But I still think he can do it. I have no doubt that there is value here for what a tutor has to offer—regardless.

That’s not to say that the eye doctor is wrong. Just that after some careful thought and discussion, I’ve decided that one kind of support doesn’t—and shouldn’t—preclude another.

As it is, we’ll have to wait one more week to see what vision therapy is all about. And I’m okay with that. I think VT will ultimately be a good thing, I just don’t know if this is the right time for us, if our schedule will stretch enough to make room for the commitment.

For that, I guess we’ll just have to wait and see. And I’m okay with that, too.

 

Decisions, decisions, decisions

Though our boy is most definitely recuperated from the stomach virus, here he sits in his pajamas, the clock ticking, his classmates deep into their morning work.

He woke up complaining of mystery ailments, unable to eat breakfast. Every gentle nudge and request to get ready for school resulted in a puddle of tears.

I thought about this last night, anticipating that it would be difficult to transition back to school today, wondering how he would react to the kids talking about the parties he missed, the fact that his uncle is leaving in a few hours, so when he woke up like a live wire thrashing about and scorching anyone who came close, I decided it wasn’t worth it. I decided he could stay home.

But I didn’t say it like that. I said, “You need another day to rest and make sure your tummy is all better so that when you go back to school tomorrow, you can have a really great day.” I even took his temperature and said, “Hmmmm. I think one more day will do the trick.” Because I simply could not make it look like I was giving in to the obvious fact that he clearly did not want to be in class today.

This is a short week for our kids. No school on Thursday, Friday or Monday. Tomorrow we have a whirlwind day, from school to vision therapy (our first session) to OT. I don’t know how that is going to work out for us. Our private OT is worried that by the time she sees him, he’ll be too tired to benefit from the therapy. It’s a valid concern, but until another spot opens up somewhere, there isn’t much I can do to change the situation.

As I drank my coffee this morning, I said to James and my brother, “Sometimes I think being a parent means spending the rest of your life wondering if you are making the right decisions…”

“Nah,” they said almost in unison, “Today? You’re worried about today? Don’t even think about it.”

Trouble is, I can’t stop thinking about it.

 

Thank goodness it’s Friday?

I knew from the caller id that it was the school. The boy wasn’t doing well. Unhappy, tired, stressed, completely dysregulated. I thought, wow, this is a first. No one has ever called me before because my son was unhappy at school.

“Maybe he’s sick,” she said. “I keep feeling his head, but I can’t tell. He says he needs to go home and take a nap before his friend’s birthday party this afternoon.”

“Um. Okay. I’ll come get him?!”

“Normally, I wouldn’t call about this. But he’s really not himself. He’s been so happy lately, so good…” her voice trailed off.

“I’ll be right there.”

There was a bit of confusion in the office. “Go to the nurse,” they told me.

“I just spoke with his teacher’s aide,” I said. “I’m pretty sure he’s still in the classroom.”

Someone checked. He was. He started to cry the minute he saw me. He was pale, his eyes were red. I felt his head. Warm, but not alarmingly so.

As we walked the short block home, he told me that he was having a pretty rough day, but that he really couldn’t wait until the party. “I hope I still get to go,” he said.

And because I still wasn’t sure what the root of the trouble was, I said, “I’m not going to decide that now. Let’s just get home.”

Well, we weren’t in the house five minutes before it hit. When I took his temperature—with the thermometer and not my hand—it was 100.7. I gave him tylenol, but he couldn’t hold it down. Within no time he was white and glassy-eyed.

Needless to say, he did not go to the birthday party. And though the rest of the afternoon passed quietly and uneventfully—a little tv, a couple books on cd, a lot of laying around—the jury’s still out on tomorrow’s performance of The Velveteen Rabbit and Sunday’s birthday party at the local cinema.

Poor little guy.

 

When is okay not okay enough?

I’ve been thinking about this post a lot in the last 24 hours. And it is making me wonder why I settle, why I accept what is simply okay in terms of my son’s education as opposed to aggressively searching for what is ideal? Why do I place him, year after year, in an academic environment that struggles to accommodate his learning style and his very special needs? Where is our dream school? Our champions of the underdog?

I’ve often wished for something to bridge the wide gap between public school and homeschool. I am not a homeschooling mom. I break into a sweat with 30 minutes of homework at the kitchen counter, so I know there is no way I can sit at the dining room table and teach. I can barely review.

Still our school is not the best fit. It’s not a bad fit, it’s simply okay. And since reading about this, I can’t help but wonder why I think okay is enough.

In some ways, I don’t know where my son fits in. I know public school has something to offer him, but falls short of inspiring him and motivating him and offering creative solutions to the countless challenges raised by his issues. He falls somewhere outside of the classic elementary school model, one foot in the world of a mainstream school, one foot out there, looking for a place to land, to balance. He’s half in, half out. Mostly okay and sometimes not.

But is that enough? Is that all we should hope for? It’s not like anyone is saying, you have to check out this particular school. I’ve asked around. We are not alone here in Mayberry. I’ve posed the question countless times, only to have other parents nod their heads and say, yes, wouldn’t that be something.

I know we’ll get by. My son will figure it out, find his place, that’s what he does—what we do, as a family. Life is full of less than ideal circumstances. Dream school, dream job, dream life—it’s all fleeting.

Still. I can’t help but want more for him. Isn’t it okay—necessary, really—to want, to reach, to say this is not enough?

As his mother, isn’t that what I am supposed to do?

 

Trying to do our homework, any way we can

Halfway home from school yesterday, my son announced that he had forgotten his homework books. “You did?” I said. “Well, we have to go back and get them.”

“But I don’t want to do my homework,” he cried as I half-walked, half-dragged him back to school.

As he moaned and groaned and carried on, I thought about how unexpected this deliberate act was. He didn’t want to do his homework. He forgot his books at school. Isn’t this what teenagers do?

I have to admit (though, of course, I could never say) that I was pretty proud of him. In his mind, he solved the problem. No books. No homework. Simple as that. What his six-year-old brain did not count on was the sheer determination of his mother, who in addition to those proud thoughts, was thinking, damn, we have to get those books—if he gets away with this today, there’s no telling when this will end.

Luckily for us, we live just about a block from school. We made it to the classroom door just as his teacher was leaving. Later, after his snack and 30 minutes of TV time, he did his work, complaining a bit, but no more than usual.

This morning, I made a point of reminding him not to forget his books. “I won’t,” he called, as he bounced and skipped down the sidewalk.

****

This week his teacher increased the number of spelling words from six to eight. And while, in the past, the words have been related in some way (cake, make, lake…), the current list is a little harder to figure (rode, those, very…). He’s doing okay with the work, but I see the areas where he struggles and I wonder what it tells me about his learning style.

Reading and spelling are challenging for him. He’s good at memorizing, but then can’t recognize a word out of context. He can read the word “has” in a book, but when he sees it as a spelling word, he stares in confusion.

I know he’ll figure it out. And I know it would be a mistake to pressure him. So I walk a fine line, encouraging him and cheering him on, but also urging him to try harder.

Here’s something I was thinking about just the other day: he needed an extra year. If he were getting ready right now for first grade—rather than second—he’d be dead on. Socially, emotionally and academically. By third or fourth grade, it probably won’t matter, but right now, today, I wish I had known enough at the time to give him the extra time.

So, for now, I’m turning my attention toward finding a tutor and hoping that will give him a little nudge. And since me and my little guy are spending the summer in LA, I should find someone out there, too—yes, a miracle worker in the city of angels.

If you have any ideas (or know anyone), I’m listening.

 

Hitting the curveballs

In a few weeks, I will be sitting across the table from our district’s committee for special education to finalize plans for my son’s IEP and placement for second grade.

Two months ago, I could have told you exactly what that IEP document needed to say and what his classroom setting should be for next year. Today, however, I have no idea. The path from dead certainty to I-really-have-no-clue has been a twisty trail fraught with detours and dead ends. I have gone from absolutely knowing what doesn’t work to having no idea what does.

To say my son has struggled in first grade doesn’t begin to cover the extent of the disharmony and dysregulation he has experienced this year. Back in October, we toyed with the idea of asking for a one-on-one aide. By December, there was no doubt in my mind that the aide was our best hope. But then something happened.

But it was nothing. Nothing changed. Not his environment, not his teacher, not his schedule. Yet in a way I can’t quite put my finger on, he changed. He settled in. He relaxed. He hit his stride—emotionally, socially, and even to some extent, academically. The boy is walking the walk, talking the talk, and hitting curveballs out of the park. Every single day.

And so, on the one hand, it makes no sense to me to demand a one-on-one aide for next year. I wouldn’t even know how to make a case for it because the truth is, he’s managing just fine without one. But on the other hand, I don’t want to risk a repeat of this year, that long hard four-month settling in period. Second grade is stepped up on so many levels. He doesn’t have four months to spare, to get used to a new teacher, a new classroom, a new schedule. Maybe an aide could facilitate that transition?

But here’s what worries me: an aide can be restrictive, a barrier to his interaction with the class. And the wrong aide can be, well, more than just wrong.

I almost can’t believe how dramatic the turnaround has been. I wait, I wonder, I think, today will be the day—the day his teacher pulls me aside after school. But, no. I am greeted with smiles and waves and thumbs up. My son is happy, relaxed, feeling good.

I am not foolish enough to believe the hard stuff is behind us. But with every gain, with every homerun, momentum builds. There is still going to be a lot of back and forth, days when he falls apart because another kid took his place in line. But there will be just as many days where that kind of thing won’t phase him.

As I watch him now—at home, on playdates, in restaurants and stores, at OT and religion—I see a little boy who is stepping up to the plate, taking a swing and consistently making contact. And it’s all good, or mostly good, or damn good enough.

But school has never been his safe place. It is the place where he stands out, where his differences brand him and separate him. It is the environment that reduces him to tears of frustration and anger, and pushes him toward his greatest struggles, his biggest challenges. I’ve often said, If it weren’t for school…

So how do I use this understanding of his inconsistencies to lobby for the right placement next year? Why do I have this sinking feeling that “ideal” placement does not exist for him, not here, not in this school or in this district? Are we better safe than sorry? And what exactly does that mean, anyway?

 

A new age sit-in

Today, the first grade classes are hosting a read-in. It’s like a sit-in with books and a time limit. The teachers invited parents to spend 30 minutes in class reading to their child and one or two of their friends.

And so at the appointed time, I will gather up my books and head to school. We’ve been told to bring a blanket (to make a cozy nest on the floor?) and wear comfortable clothes.

These are the books I’m planning to read:

• Niccolini’s Song, by Chuck Wilcoxen & Mark Buehner
• Puff the Magic Dragon, by Peter Yarrow, Lenny Lipton & Eric Puybaret
• Mrs. Biddlebox, by Linda Smith & Marla Frazee
• An Island in the Sun, by Stella Blackstone & Nicolleta Ceccoli

To say my son is crawling out of his skin with excitement doesn’t begin to cover it. Because in addition to today’s read-in, the class is scheduled to see the movie Charlotte’s Web (they just finished reading the chapter book) and today is Friday. The Friday before a week long winter break. Books and a blanket with mom, a movie during class time, and no school for a week—what more could a first grader ask for on any given day?

Life is good, my friends.

 

Going nowhere

I am home today with one very sad, very disappointed and very sick boy. This is not one of those ambiguous cold-like illnesses, one of those borderline days where school is a possibility. This is sick. Wake up crying and asking for medicine sick. Croupy, barking like a dog and my throat hurts sick. I can’t breathe through my nose sick.

But today is also the class field trip. The wear your special class t-shirt and ride the yellow school bus field trip. The see a play in a fancy grown up theatre field trip.

As much as it broke my heart to do it, as much as he cried and begged to be taken to school so he could ride the bus and see the play, I had to keep him home. A few minutes ago, he crawled into my lap, wrapped his arms around my neck and told me again how badly he wanted to go on the field trip. And I said, yes, and you deserve to go, you’ve worked so hard, you’ve been doing so well at school. This would have been a special treat. And for a second, I wavered.

Then he coughed. I felt it deep in his chest. Heard the familiar bark.

No, today is not one of those school—yes or no? days. Today is clearly a no.

 

Maybe even today?

Perhaps the single most important objective of first grade is learning to read. And my son is close. Very close. But not there yet.

I imagine this is one of those things that will eventually click, like flipping a light switch in his brain. He’ll go to bed one night studiously sounding out words and wake up reading chapter books.

I’ve been pretty laid back about the reading from the start. I want to foster a lifelong love of words. Better a late reader than a child who dreads the very idea. Still, I’ve decided to step it up a bit here at home. We’ve been spending some of our free time this last week with these books and on this website. I don’t want to pressure him, but I do want to give him a little extra push.

I wonder if it isn’t all about the way his brain processes information. There are times when it might seem like he is reading, but he’s simply working from memory and a careful study of the pictures. When you show him the words out of context, he doesn’t always recognize them. His phonics are good—excellent, in fact. He can sound out anything, but then when he tries to put it back together, say the word quickly, he typically drops off one or more of the sounds.

It’s likely that he may eventually need a tutor; that we’ll have to shop around for a learning method that makes more sense to him than what they are teaching at school and what we can do at home. I’ve talked to his classroom teacher about it and our private OT. They both agree that he’s almost there and that a tutor only makes sense if he isn’t reading by the end of the school year.

In the meantime, I’m going to continue looking for excuses to give him “extra” computer time and special “read with mommy” rewards. Because when it’s handed to him in a pretty package tied with a nice ribbon, it doesn’t feel like homework or study time, it feels like fun, like he’s getting away with something.

And what could be better than that?

Well, maybe just this: Right after I snapped the photo above, he turned to me and said, “Some day, mommy, I’ll be able to read to the whole family… Maybe even today!”

Yes, maybe even today…