Today was the little mister’s yearly well visit with the pediatrician. I hesitate to call it a “well” visit, because it is always a torturous experience. Our doctor has a way of ending most well visits with the phrase “He/She’s Perfect”. With Nicholas, I am pretty sure the only time she said it was the day he was born. Early on, she was worried about his reflux. Turns out he had pyloric stenosis requiring emergency surgery. And allergies. And sensitivities. And he needed the pyloris reopened ten months later. He pretty much didn’t eat for a year. So now that he is three and finally growing, it was a relief to hear her say “He gained two pounds in the last year. That was really good for him.” Why does every compliment end with “for him”? It’s like he’s forever labeled as less than average. I know she means well, and to be perfectly honest, I say “for him” a lot, too. It’s like I want other mom’s to understand how big of an accomplishment it is that he slept in his own bed. Or stayed in a chair without a harness. Or actually tasted the green bean. Or took two steps with his socks off. But just once, I’d like him to be good at something on someone else’s scale instead of his own little “special” measurements.
I know, he is seriously better off than a lot of other kids. His social skills have improved dramatically. He’s even talking at an almost average level now. And he is very, very active. He’ll probably be an athlete someday. But today, I’m discouraged. I thought we had made so much progress. And we did, we really did. The only thing seriously off today was his right ear. But it just seems to me that even when I see him as “perfect”, I’m wrong. Sure he’s eating and growing much better. But he’s still “too thin for his height”. Sure the genetic FISH tests didn’t show any deletions, but, as she worded it, “He’s just Nicky”. Like he’s his own class of “special”. I’m over sensitive today, I know that. But I need to vent. Probably because of what happened during and after her examination.
She tried to start by talking to Nicholas. He closed his eyes, and buried his face in my chest. So I had to explain what he could and couldn’t do communication wise. Then she tried to touch him. His uncomfortable whimper made me feel like a terrible mother as I tried to sing his favorite song to distract him so the doc could listen to his heart and lungs. Then she pulled out the thing that checks mouths and ears. Nicholas was no longer mute. “No, no, no, no, no.” I reassured him that she was just looking. I had to hold him in a death grip while the doctor pried open his mouth, making him gag and nearly vomit. Then I had to tuck him under my leg and pin his head to my stomach so she could look in his ears. He never did open his eyes for her, but since we just saw an ophthalmologist and she had his report in his file she didn’t push it.
And that was the easy part. Turns out she couldn’t see his ear tubes. I knew we were in for trouble. Nicholas hates having his ears touched. Let alone looked inside. And now she was going to have to irrigate his ears? This was not going to be pretty. And it wasn’t. Twenty minutes of ear splitting shrieking and giant tears combined with syringe after syringe full of vinegar while I pinned him to the table with my body, squeezed his arms into an X across his chest, and propped a knee into his cheek to keep him from turning his head. Even so, he managed to kick and squirm so much that he and I were both damp and smelling like Easter eggs by the end. The worst part was his calling for me, “Momma, momma, momma.” like I was betraying him on some deep, unforgivable level. I wish someone else had pinned him down so I could rub his curls and whisper in his ear like the good guy. It probably wouldn’t have helped, but it would have made me feel better.
By the time she got the hardened balls of ear wax encrusted plastic tubes out of both ears, Nick and I were both quivering with stress. And then she had to look one more time. He has another ear infection. So now we have to deal with giving him an antibiotic, and return in two weeks for her to look inside his ears again. I’m SO looking forward to that visit. Maybe then, when the ears are healed and she isn’t focused on everything else, she’ll end the visit with “He’s perfect.” That would really make my day.
If not, I need to remind myself that Nicky might not be “perfect”, but neither are the other kids she so quickly labels.
It was also my older SPD son’s physical. She didn’t hesitate to end her exam with “he’s perfect”. Things seemed to go really well for him. Unlike his litter brother, he is usually off the growth charts because he is too TALL. This year his growth slowed down enough that he made it onto the chart. At the 99th percentile. What can I say, he makes up for his brothers culinary snobbery. Nobody needed shots, and the visit went well enough. Other than complaining about the noise during Nicky’s ear debacle, Allen appeared just fine when I dropped him off at his elementary school twenty minutes before his scheduled lunch. I say “appeared” because apparently starting the school day in the middle did not sit well with him. I have never dropped him off late before. It’s his first year in all day school, and he hasn’t had many appointments. It never occurred to me that simply missing the first two hours of school could turn him into a ticking time bomb. I should know by now that anything can set him off, but he has been doing so well that most of my energy has been focused on the little mister.
I had Nicholas happily playing with some blocks, strapped into his harness at the kitchen table when it was time to get the big kids off the bus. The bus was running late, and when it pulled up, Allen came out crying. The bus driver assured me he had been fine on the bus today. She said “today” because Allen wasn’t always fine on the bus. In fact, Allen had a track record of flying off the handle during the ride home. After all day at school, he was on sensory overload by the time he was forced to climb aboard a crowded, noisy bus and endure twenty minutes of smelly jostling. I still haven’t figured out a workable solution, but I can’t blame him for the minor altercations that he tends to find himself in. He’s only seven, and he doesn’t know how to firmly explain his need for personal space. Sometimes a swift kick to the kneecap is the only way he knows to tell someone to back off. But, I digress. Today, he was fine on the bus. Because he had spent the whole ride as still as a statue, trying to hold his tears in. (It’s nice having an older sister on the bus to fill me in on the details sometimes). I don’t really know what all happened during the day, but the note from his teacher that I had to sign and return was basically a list of immature, distracting behavior. Farting noises during carpet time. Giggling and telling jokes during group discussion. Stuff like that. The stuff he does when he just isn’t regulated. His coping mechanisms for when he can’t get his world straightened out. Or as he describes it “I was just trying to get the crazies out”. I’ve learned that for Allen, “the crazies” can be caused by changes in schedule, a nasty cold virus, an overwhelming sensation (like Grandma’s new perfume), or an irritation of some sort. Once “the crazies” set in, there are only a few ways to get them out. And most of them are not “acceptable” school behavior. At home, we have a trampoline to jump on. A slide to climb up. Weights to strap onto his ankles. But when he’s forced to sit still? That’s when problems happen. Winter and indoor recesses do not help. And do you know what the “punishment” for his behavior is? Missing recess. The one thing that might help prevent that behavior.
Clearly our school system is not designed for kids with mild SPD and no IEP. It isn’t fair. So we’ll just have to do our best to get the crazies out tonight and tomorrow morning before school. Although the weather forecast is predicting an ice storm overnight. Great for Allen if he misses school and gains an extra day to get the crazies out. But a nightmare for Nicholas. I guess we’ll just have to wait and see what tomorrow brings and deal with the problems as they come. Isn’t that what we always do?







Comments
Melissa
Missing recess is the worst punishment EVER for any kid – SPD or not! I was taught in my education courses to NEVER take recess away as a punishment. She must be living in the dark ages if she thinks this is helpful. Can you talk to the teacher about just how detrimental this is and ask her to find an alternative method to deal his behavior? The following article might help her understand why kids NEED recess: http://www.cbn.com/cbnnews/healthscience/2010/February/Recess-Good-for-Childrens-Mental-Health/
The teacher might also benefit from reading ‘Gabriel Goes to School’ (it’s listed in the sidebar of this blog under sponsors) I gave copies to my SPD daughter’s teachers so that they can understand SPD – it will take them five minutes to read and they may see your son in a whole new light.
Jessica
So much of that story reminds me of my son!
The part about holding your son down for his exam, every part of it… the giant crocodile tears, pinning him down, gagging himself from crying so hard, feeling like the bad guy, the guilty feeling, shaking from stress and all because the doctor needed to look in his ears… perfectly described our last doctors visit (well, EVERY doctors visit)!
As for his own little “special” scale… totally get it!
Our 3 year old son took a bite of food for the FIRST TIME EVER last Tuesday! If only everyone knew how much work has been done… if only they knew,over the last 2.5yrs, we’ve had therapy 5x’s a week, we’ve gone to hundreds of doctors appts, we’ve overcome countless fits, meltdowns and tears to get here… then they would understand just how monumental this was! It was quite possibly the BEST day of my life!
Even on his “special scale,” it was an “off the charts kind of day”… and for once, I mean that in a good way!
Susan S.
BTDT with the missing recess thing. That’s just one reason why I got a 504 plan for my son based on SPD. Allen needs one. These plans are not based on academics, they are based on a diagnosis that significantly affects their life, like SPD. Run, do not walk, to your SpEd department and apply for one for each boy. On it, you can have strategies in place for when Allen needs to get the crazies out and stipulations that he does not lose recess. There are parent advocate groups around the country that can help you along with this process if you need or want guidance. I found that at my son’s little school, it was the school’s counselor that wrote his 504 plan, and she was clueless about SPD. I was going to demand changes to it, but my son qualified for an IEP this year.
Best of luck.
Tutyfrutyjudy
“perfect”
What a dangerous aspiration to dangle before children and their parents. Not that she truly expects perfection, obviously. But by not using that term in a blanket, universal way, she really is segregating her patients and their parents, though unintentionally. Besides if it makes you feel less than par when your child isn’t bestowed that particular ‘blessing’, how might it make children who are aware of her tendency to grace individual’s with that phrase of favor feel if they do not receive it.
She should be more careful and aware of the power she weilds over parents and patients feelings with the use, or lack of, that phrase.
Really, like you said, no child is perfect. But at the same time, they all are. Including yours. :•)
Jenny from the Block
Hugs! Doctors visits are horrible for us too. Bud hats to be looked at or touched, ESP in that setting. It is awful.
Carri
Just wanted to say- you can have it put in the 504 plan that the school can not take away his recess
they don’t like it- but it does save the child’s sanity!
Courtney
Re: The 504 plan, the school may resist citing satisfactory academic progress. A 504 plan for a child with a disability and the district is out of compliance if they refuse it. Just had this fight with our District and won as soon as due process and out of compliance was mentioned in a nine page letter to the District. To be fair, the fight was with the District, not the school.
Courtney
A 504 plan for a child with a disability is a legal requirement … Sorry for not proofreading before submitting