Well, We’re Off To Kindergarten…

…BUT it’s not the kindergarten I had imagined.

Babyboy will be five next month, and we were very antsy about him moving from his special ed preschool program to a mainstream kindergarten. At our local public school, that’s all there is, and from what I understand, it’s twenty-something kids and one full-time teacher, with aides. Given Babyboy’s developmental/ social delay and toileting issues, we didn’t see that as a viable option.

So, we went into his I.E.P. (planning meeting with all of his teachers) fully prepared to pull him from the public school system altogether, pay for another year of preschool, and arrange for the support services (speech and occupational therapy) ourselves.

We’d actually made significant headway into this plan. Babygirl’s school was willing to take him, and we’d met with a private child development team that could provide services in the school setting. We actually have neuropsych testing set up as well. This has involved a lot of web research/ applications/ emails/ phone calls…

I was shaky and distracted the morning of the I.E.P. I anticipated conflict. I hate conflict.

But the team was all genuine smiles, and the attitude was truly caring. These are people we know, who have been working with Babyboy for two solid years now. He’s been with most of these folks since the very same week he turned three years old… summers too.

The basic facts were presented: he’s made huge strides since he started, from practically no speech to making speeches; from flopping on the floor in tantrums with every transition to running ahead of the other kids; from zero eye contact to initiating conversations with his teachers. Intellectually, he’s mastered their preschool curriculum. 

But, all agreed that socially, there’s work to be done. Social communication, relationships, expectations… and they presented a plan for next year that we didn’t even know was possible, because we didn’t know that the program existed. 

Our town has several elementary schools, and apparently, one of the smaller schools offers a special education kindergarten program, very similar to the preschool program he’s been in: half special needs kids, and half hand-selected developmentally normal peers. This kindergarten class has fifteen to eighteen kids, with two full-time teachers, one of whom is a special education teacher. The curriculum is heavy on social skills. He wouldn’t be the only kid in pull-ups. He can still receive services, his speech therapy, OT. 

This model continues through the fifth grade, and they recommended that he stay in this special environment with the same group of kids the whole time. Babygirl would then also have the option to attend the same school, either in their mainstream classroom, or as a peer in the special ed classroom. 

We were floored. 

How is it that we, who have been fretting and stressing for months, didn’t even know that this program existed? In our own town? It was, frankly, embarrassing. The doctor in me was peeved that I was ignorant of this rather important piece of information, and that it was my own fault. 

So, I’ve dissected this out: Yes, I’d been chatting with other neighborhood moms about kindergarten, but their kids are all developmentally normal, and so I was only hearing about the mainstream program. Our neighborhood school only offers the mainstream program, so I never saw those classrooms or heard anything about it from other local parents.

And, I’ve been avoiding the special ed parents’ group, because the one time I attended, there was a lot of complaining and negativity. I didn’t find that one meeting especially helpful, and actually, it really stressed me out, so I’ve skipped them for the past, uh, year and a half. Oops. If I’d even gone once and chatted with folks, I’d very likely have heard about this K-5 special ed program at the school a mile and half down our street. ON OUR SAME STREET. 

We were invited to visit the program, and so Hubby, Nana, and I went, last week. The school is very pretty: set back in the woods a bit, right next to our favorite duck pond, and a wooden bridge across a small stream leads to the front doors. The building is modern, light and open. The special ed kindergarten room is bright and cheerful. The three of us sat at a little table off to the side and watched the sixteen kids working in four small groups. Each group had a different assignment related to the life cycle of the butterfly: one had to cut, color and paste egg/ caterpillar/ cocoon/ butterfly pictures in the correct circular order, another had to re-create a copy of a poem about the cycle using velcroed words in large print on a display board; et cetera. The teachers roamed and offered guidance here and there, but mostly, the kids worked together in relative quiet and cooperation. Everyone was focused, engaged, happy. 

We registered Babyboy for the program later the same day. 

He’ll go to Babygirl’s school for the summer, and we’ll use those services we put together. But in the fall, he’s going to kindergarten, gosh darn it.

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Latest MiM Post: How Much Do You Share With Your Patients?

Some nice commentary generated by my post on the Mothers In Medicine Blog: How Much Do You Share With Your Patients? 

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To Kindergarten, Or Not To Kindergarten? That Is The Question…

I have photos of my kids on proud display in my exam room and workspace, and my patients often kindly inquire about them. When people ask me how old Babyboy is, I tell them, He’ll be five years old at the beginning of the summer.

And then they inevitably ask, Oh! Will be be going to kindergarten in the fall?

Then I hem and haw and, depending on how much they know, answer something along the lines of, We’ll see… or We might hold him back…

It’s not just my patients; it’s the lovely elderly ladies in the grocery store, usually right after I LOVE his curly hair! and friendly neighbors who we don’t see very often, and the woman in the barbershop who trimmed those curls off this week.

Many times, I don’t need to say anything else, people nod and say, Oh, yes, of course, he’s a boy turning five in the summertime. Boys do need more time, don’t they?

And this is true. It’s quite the thing now for parents to hold back their just-turned-five boys for an extra year of preschool, for many reasons, but not the least because even normally developing boys tend to “mature” slower than girls do.

Here we are, with a mildly autistic boy who’s turning five in the summertime. He’s not reliably potty-trained.. actually, he’s almost 100% in pull-ups. We’re 1 for 2 with successful play dates. We’re consulting with a child psychologist for recurrent disruptive behavior issues. Do we really want to rush this kid into kindergarten?

No.

He’s currently in a public integrated preschool program, with a mix of developmentally different and regular kids. I’m very happy that his teachers feel he’s doing well in the classroom. The quarterly reports we receive document excellent progress in academic, speech, and social skills. I know that they feel he can move up to the mainstreamed kindergarten class next year. We have an IEP (Individualized Educational Program, i.e. special ed student thing) meeting next week with all of his teachers… it will be the first time we’ve sat down with them since the fall. Several weeks ago, I let his main teacher know that we didn’t think he was ready to be advanced, that we had concerns. I understood that she felt he was ready, and that we would discuss this at his IEP meeting.

I got a call from an administrator in the school system this week. Actually, she called several times, leaving increasingly strident messages that we needed to register Babyboy for kindergarten.

I called her back yesterday, and explained, “Oh, we haven’t registered him, because he’s not going to kindergarten in the fall.”

She was silent for a few beats, and then said, curtly, “Why not?”

I was sitting in my office, alone, but I could feel the flush rising to my face. “Uh, well, we don’t think he’s ready. We have an IEP meeting with his teachers next week to discuss this.”

“Well, that’s a team decision.” she said.

I wanted to say, No, actually, that’s OUR decision. But this is just someone working in an office at the school, and she’s just doing her job. Not worth getting huffy.

More importantly, I understand that at a public school, parents pushing to keep their children in a special program for an extra year can raise panic. Even in our highly-regarded school district, resources are limited. We see it in the artwork our kids bring home: Babygirl at the private preschool brings home colorful mounted canvases, decorated picture frames with her photo inserted, wooden birdhouses, flowers in painted terra cotta pots. Babyboy at the public school brings home construction paper drawings, maybe something made with popsicle sticks, a plant in a paper cup.

So, I told the woman on the phone: “Listen, we don’t want to create conflict. Honestly, if we don’t see eye to eye with his teachers at the IEP, we’ll just pull him, and send him to private preschool for a year.”

That was more than I had wanted to explain. Other parents in the special-ed know had counseled us to push hard for that extra year, and not to mention that we can send him private, if we have to.

But, I can’t hide my cards. I’m all out there. My kids’ photos are up in my office for all of my patients to see, and I invite their interest. My life is up on this blog, and I invite your interest. I can’t lie worth a damn.

“Oh,” she said. Was that relief in her voice? “Well, I guess I’ll be talking to you next year,” she ended.

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I Love That Dirty Water….

Today was my Thursday “off”: me trying to cram a week’s worth of errands, exercise, and housework into one day. Not even one whole day, actually. Everything has to fit into the hours before two-thirty p.m., when I pick the kids up at their schools… since work’s been a bit of a bummer lately, I wanted to do something fun this afternoon.

The morning was a blur of: kids’ school drop-off, animal shelter morning cat duties, hardware store gardening stuff run,  my q6 weeks waxing appointment, high-intensity workout at the gym, bank machine, post office, and then, an hour meeting with our child psychologist. Somewhere in there, I logged into work.

Whew! Two-thirty and…

Hubby went to pick up Babyboy so they could swing by the DPW and pick up our new composter. This is a story in and of itself; suffice to say, Babyboy is really into composting. He’s been looking forward to picking this thing up since last week when I ordered it (our town sells them wholesale). So, off they went.

I picked up Babygirl, and I asked her what she’d like to do on this warm and sunny afternoon.

“I want to go to the beach!” she exclaimed. “I want to look for sea shells!”

And so, we had a plan.

We’re very lucky to live a seven minutes’ drive from a wonderful beach. It’s about a two-mile stretch of gravelly New England coast on an urban bay, and features a little bit of everything: a paved walking and running path, shaded benches, two nice playgrounds, several classic fried clams shacks and ice cream stands, and even some protected wetlands. There are lovely views of our fair city in the distance.

But, I wouldn’t put my face in that water, if I were you. Feet, fine.

Babygirl took off her shoes and ran to the shallow water’s edge, kicking up spray, squealing. We saw horseshoe crabs and hermit crabs and seagulls and loons. We collected all manner of shells: oyster, clam, mussel, snail… Babygirl was thrilled. The sun was shining hot, there were very few folks around, and Babygirl ran and twirled and splashed and hammed it up for the camera.

Yeah, I love that dirty water….

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Medical Mysteries and Migraines

The past two weeks, I’ve ended my workdays feeling rather…. depleted. I’ve had an unusual number of mystery medical cases, but not fun ones like in the New York Times Sunday Magazine. I haven’t solved many of these, and I’ve got some frustrated patients. I wish I could do some internet presentations and solicit all of your clinical opinions, but, HIPPA. I’d rather not lose my job.

I can, however, share some relatable cases from the distant, very distant, past. Here are two cases from training that still haunt me, well over a decade past:

I once took care of a young mother with postpartum cardiomyopathy, and refractory nausea that no one could figure out. She was repeatedly admitted to the hospital for nausea and vomiting, and became malnourished. Specialists from every discipline came to consult. The nausea wasn’t thought to be related to her heart failure or any GI or neurologic condition, and didn’t respond to any treatments. The cardiology team became frustrated and asked for a psychiatry consult, insisting that it must all be in her head. I rotated off the case and lost track of her, but when I ran into a colleague familiar with the case a year later, he informed me that she had passed away. He said it was odd, as her heart failure wasn’t that advanced, and she had had a feeding tube placed so she was getting nutrition. Despite all of that, her nausea had continued. He said he thought she died because she couldn’t live with the unexplained, persistent nausea anymore.

On another rotation, I met a middle-aged woman who had been complaining of a vague and progressive weakness for years. She’d been followed by a primary care doc and sent to a few specialists locally; she was diagnosed with severe anxiety and depression. It was only when she saw an optometrist in a different town that a breakthrough was made: the optometrist was struck by the fact that her facial bones were markedly visible. She had painfully obvious temporal wasting. He recommended that she see a neurologist at our teaching hospital, and thus she was correctly diagnosed with fairly advanced ALS: Lou Gehrig’s Disease. When I rotated off the floor, she was grappling with this terminal diagnosis and the fact that she was close to requiring- or declining- mechanical ventilation.

I was a mere trainee for these cases. But since then, I have been involved in more like these, where the doctors were not the heroes, or were even villains. I don’t want to be like those doctors. I want to be the doctor who believes in the patient, uses my brain, persists in the search, never loses hope, and solves the mysteries.

Unfortunately, that’s just not how it feels lately.

So I was leaving the office later than usual on Friday last week. One of our nurses was still there. She’d been helping me with one of our ongoing sagas of sickness, and we hadn’t been able to resolve much. I stopped in to say ‘bye, and we looked at each other like What the hell??, hands up, shaking our heads. But we laughed at each other and ended with:

“Have a great weekend!”

It felt good to have even that tiny bit of commiseration…

But I drove home in the usual late Friday traffic, and had the beginnings of a migraine before I got home.

I’m not sure if it’s due to heavy brain use, or the negative feedback from my unhappy customers, but I’ve been getting migraines almost daily.  I do think the commute is also a trigger: sitting in the car stopped in tunnel traffic, breathing fumes, listening to the usually really depressing local news, reviewing cases in my head…

The migraines clear up with a couple of Aleve and maybe an Imitrex, but the mysteries remain unsolved.

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Goonies and Nonnies and Hope

I worry that I’m too negative when I write about Babyboy. Lately, I’ve focused too much on disability, and not enough on ability.

Honestly, we often marvel at his creations. He’s a whiz with mechanical contraptions in general. Last week, he built a pulley system in our backyard using a rake, a jumprope, a beach bucket and his playground equipment. Hubby and I had been engrossed in hedge trimming, when I noticed Babyboy’s machine. I tapped Hubby on the shoulder and we watched as different objects were placed in the bucket, lifted, the rope secured, more things added, until the bucket dropped…

Is he experimenting with weights? I whispered.

I don’t know, but that’s pretty cool, answered Hubby.

But the coolest things, I think, are the books. Several days a week, Babyboy will sit down with a pad of paper and intensely, purposefully, feverishly create a narrative. He usually draws, but often includes collage, like, ads he’s cut out of the sunday circular. Then, if the paper is loose, he organizes and orients it all and asks us to staple it together as a book. He’s made many “books” this way.

The stories don’t always make sense, but they’re adorable. He has frequent flyer characters that appear in several books; favorites are the Goonies and the Nonnies. I think Babygirl started this one, pointing at Babyboy and saying, “You’re a Goonie!” and he said, “I am not! I’m a boy! You’re a Goonie!” and this was elaborated upon, until the Goonies had certain things they said or did. Then the Nonnies showed up.

He’s got a loose pile of drawings from this week that he says he wants to put into a book, but it’s not finished yet. Below is an example, and when I asked him what it was, he explained: “It’s the Goonies and the Nonnies playing music and the people are happy. Those are musical notes in the air.” I was impressed by his artistic rendition of the notes, and his grasping that the notes floating in the air represented music being played.

I mean, we know this is not child prodigy stuff, but it makes us very hopeful that he’ll do well. He’s using his imagination; he’s grasping concepts in different domains; he’s creating in multiple media; and he’s able to explain his creations.

Some friends told us we should take really good care of the books, because we’ll want to save them forever. “Those are precious!” they said. I was embarrassed that hadn’t occurred to me, and now I’m trying to keep track of them all. He and Babygirl both keep them in regular bedtime routine rotation. What’s really funny is that he “reads” them, and his recital of what the pages say is ironclad consistent from reading to reading. Meaning, it’s just a child’s drawing, but to him, it says something very specific. If he asks me to read one, and I try to remember what it is, but get it wrong, he jumps up, grabs the book, and corrects me.

I say: “Otis the tractor comes knocking on the door and says he wants to play…”

He objects: “No Mommy! It’s, Otis the tractor knocks on the door. Knock, Knock! You have to say it, Mommy. Knock, Knock. He wants to play.”

And so, the paper pages are getting wrinkled and worn…

I’m sure we’ll manage to save a few, though, because, they are precious!

 

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“You’re a raspberry!” – On defiance and other difficult kid behaviors

I never know how to respond to my kids’ difficult behaviors. Or, rather, how to correctly respond. Despite the myriad parenting books, websites and blogs I’ve turned to, plus our pediatrician, a child psychologist, and  friends, I don’t ever know what’s the right thing to do.

Examples?

Babyboy’s been trying out some new protest behaviors. For a very annoying several-week stretch, it was spitting. We’d tell him it was time for school, or bathtime, or bed; or not to whack his little sister over the head with a firetruck, and he’d spit at us- sometimes in our general direction, but a few times, right in the face.

Spanking doesn’t faze him. Yelling, variable: sometimes he doesn’t seem to notice, and other times he gets traumatized. Time outs: Usually, he doesn’t mind. Not effective enough. Taking favorite toys away: that definitely gets his attention, and this is our current preferred discipline method.

Problem is, there have been days where we’ve almost run out of favorite toys to take away, and he was still spitting, or doing whatever bad behavior thing it was. We’ve gotten down to every last Lego, truck, and stuffed animal, praying that he didn’t do anything else before bedtime, or we’d have to get creative.

The spitting thing has gotten better, but we don’t know why. Now, he calls us names. But, we sometimes can’t help laughing at what he thinks up. “You’re a raspberry!” is the latest. The last time he said that, Hubby turned around and said, “Well, you’re a blueberry!” Babyboy didn’t like that.

Babygirl has taken to chucking things at us. This week, she scratched her brother as they fought over a toy. Hard. Her nails left welts on the back of his neck. I took the toy away and put her in time out. She howled, flailed, and yelled: “You’re a BAD mommy!” and threw one of her tiny plastic animal toys at me, as hard as she could. It hit my chest and fell to the ground; not painful, but wow, was I shocked.

I took away more toys: her animal “friends” of the day. She threw herself on the ground, crying and screaming and protesting. When I walked away, she chased me and grabbed my pants, demanding “GIVE ME MY ANIMAL FRIENDS BACK!” which I ignored.

What was remarkable was that Babyboy quietly gathered up some of her other animal toys and brought them to her. “Here you go, here are your animal friends.” It didn’t calm her, but I was struck by his gentle attempt.

Later, at bathtime, I showed Babygirl the raised red scratches she’d left on his skin. “Look what you did, this was very outchy for your brother!”

She inspected the marks with serious wonder, and said to him, with real regret, “I’m sorry, I didn’t mean to hurt you.”

The worst behavior we’re seeing may not even be defiance. It’s Babyboy’s perseverations. We don’t know what these are: an OCD thing? An autism thing? A random kid thing? Whatever they represent, they’re getting worse: longer episodes, and more frequent.

Babyboy will become upset about something that was done in the wrong order. Most often, it’s something like, he wanted to be the first one down the stairs and into the car. But, he didn’t say he wanted to be first, he just starts flipping out as we’re all getting in the car. He cries, violently throws himself to the ground, refuses to move unless we can somehow re-do whatever it was.

It’s not always about him being first. Early this morning, it was that I got him his slippers before I got him his milk. He collapsed to the ground, crying, begging, “Go back! Put the milk back, put the slippers back! Get the milk first!” Over and over. Five minutes. Ten minutes.

I’ve been experimenting with ignoring these episodes, in the hope that he would learn we can’t “re-do” everything on demand. But, he seems to be in actual pain. He begs, sobs, pleads, “Please, please, you have to go back! Mommy, please!

This morning, he went on and on, banging his fists on the ground, begging, crying…

And I did, I hugged him and said, “Okay honey, if I put everything back and do it again, will that really make you happy?”

He popped up, rubbing his eyes, and said, exhausted: “Yes, Mommy, please.” He watched me very carefully as I put everything back and did it in the “right” order.

Hubby took him to the grocery store this afternoon, and had a similar experience over checking out. Something about the order of things on the conveyer belt. He had one yesterday too, at the hardware store, also over checking out, that Hubby had put the items on the counter before Babyboy was “ready”.

And two days ago, Thursday, my day off with the kids, I took them to a friend’s house to play, and he had a doozy of a similar fit, in their yard. Babygirl had reached their jungle gym first, and he did his usual throwing himself on the ground crying, demanding that we all go back to the car and start over. He hit the ground and demanded, over and over, “Go back! Go back! She needs to let me go first!”

The other kids slowly came closer and closer to Babyboy, mesmerized by this unusual behavior, not sure, at first, what to do. Then, I think one of them decided it was a game, and going up very close, started mimicking Babyboy. The younger child did too. They weren’t trying to be mean, I’m sure; they were trying to make sense of the drama.

I calmly tried to distract them: “Hey guys, he’s just really upset right now, let’s let him be by himself, okay?”

But they didn’t seem to understand me, and the mimicking made Babyboy even more upset. “Go away!  Go away!” he screamed. He just seemed to be in so much pain about it all. Finally he jumped up, pushed past the other kids, ran up to the jungle gym, and violently yanked Babygirl off the jungle gym swing. She started crying; meantime, the other kids had followed and were still making mimicking sounds.

There I was, in this nice backyard, watching over this melee, Babyboy at the heart of it, still yelling “Go back! Go back! She needs to let me go first!”, and I was standing there useless, with tears running down my face. I just had no idea what to do.

Luckily, the other adult helped out. I think as she was a new person, it somehow snapped Babyboy out of it. I was shaken up, and it took an embarrassing long time for the tears to stop.

Hubby and I have talked about getting help from the pediatric psychologist for this, and I’m trying to set up neuropsychiatric testing as well. How much of this is normal preschooler behavior: “testing”, learning to share, needing control? How much is pathologic: obsessive compulsive, autistic?

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