The morning started out promising.
We practiced saying "Open wide!" We pretended to check our teeth with the reflection of a small silver spoon. I massaged his cheeks and rumpled his hair to try to desensitize his head. We read a story about a brother and a sister's trip to the dentist and then Sam pulled out his markers and paper and made his own going-to-the-dentist book. After stapling it, he held it proudly and told me he was ready to go for his first visit.
A few weeks ago, I took him with his brother to meet Dr. P. School was out and John had an appointment — I thought that he could get a feel for the office and chairs and waiting room. He watched as Dr. P. examined John's teeth and seemed calm even when John whined a bit. He admired the colorful murals on the walls and called everyone from the receptionist to the hygienist "Mister Dentist Person". I checked out the ASA's tips on going to the dentist and thought we were as prepared as we could possibly be.
When we pulled into the parking lot he said I don't want to go to the dentist anymore. I ignored him, of course, and parked the car. Even as he repeated this refrain over and over, he still walked by my side. When we got to the door, he tugged my hand, but walked in behind me. The waiting room was empty and full of books and things to look at, but even so, I paused when they gave me a clipboard of paperwork to fill out. I wasn't so sure I should take my eyes off him.
I was about halfway through the first form when, out of the corner of my eye, I saw him open the door. I jumped up, startling the mother and two young children who had since joined us. "Sam!" I said. I'm waiting at the car, he said, slipping out. Grabbing his hand, I lead him back inside just in time to hear the hygienist call our name. I pulled him to one of the interior rooms which was decorated in a space theme. Score! The perfect environment to distract him, I thought. Planets, space ships, rockets, moons and stars.
He went straight to the corner and stood facing the wall. I watched as he squinted his eyes and said, No dentist today! By now, our dentist, Dr. P. had entered and she began the slow dance of trying to win him over. "What flavor gloves would you like? Cherry? Strawberry? Do you want a toy car? a sticker? three stickers? Why don't you sit on Mommy's lap? Can you open wide?"
It quickly became apparent that this would be more than a two-person job. It took four grown women to hold him down just to have his teeth brushed. If only he could have stopped screaming long enough to breathe. If only he could have taken a deep enough breath to realize that it didn't hurt, well...then I wouldn't have a story, I guess. When she was done and pronounced his teeth to be in spectacular health, he admonished her You hurt my teeth! "I'm sorry," she said, "next time you need to hold still and it won't hurt at all." Next time, he yelped, you need to do my teeth a different way.
"Yes," she replied.
And see that Uranus (a sticker on the far wall)? It needs to go over here with the other planets like Saturn...and Jupiter... and Pluto... Can you move it please?
"I will get another Uranus sticker and put it where it belongs for next time. Are we ready for our x-rays?"
I should have immediately vetoed that idea, but since we were there, and really — how much worse could it be — we sat strapped together in the dentist chair with our radioactive "space bibs" that were just enough to push Sam over the edge. Before I could react or remove the heavy cloak off of me, he slid off my lap, flew to the door, then to the second door leading to the waiting room, and then, unbelievably, to the outer door. I'm sure the sight of me and two white coats in hot pursuit helped whip up his speed.
By the time we reached him, he was halfway back to the car and sobbing. As we drove away (the dentist helpfully brought me my purse and said to not worry about x-rays this visit), he yelled between sobs, I did it Mommy! I went to the dentist!
Yes, baby. Yes, you did.
No one can convince me this child is not on the spectrum, despite all evidence to the contrary.
April 28, 2009
April 20, 2009
Some Unexpected News
For more than a week I've been putting one foot in front of the other, just like I do every day. We survived Spring Break and even better, we thrived after John slept through for seven straight nights. This alone is huge, people, huge! I've been getting them up every morning — feeding and clothing and getting them off to school, as if nothing momentous has happened in our lives. Business as usual.
But there's something even bigger. You mean the huge is not the return of some zzz's at night?
No, it's been brewing and it's so big I've only been able to take it out and look at it when I'm quiet and the house is asleep. Even then, I don't know what to make of it.
Our developmental pediatrician thinks Sam may be off the spectrum. As in, no more autism diagnosis. It's not yet official — she has ordered new neuropsych testing to see where both boys are now, but she thinks he'll test off of it. And as a good friend said, even if he doesn't test completely off of it, he is close enough to be questioned and that can only be a good thing, right?
Right? You'd think I'd be shouting from the rooftops, "We did it!" And don't get me wrong, I am thrilled at the possibility. It just hasn't sunk in. And in any event, if it's true, Sam did it. No miracle cures around here, just lots of speech therapy early on and some wonderful teachers in his special needs classrooms.
But then (and again, if this is true), what does that ultimately mean? They say to parents upon first hearing the news that their child is on the autism spectrum, He's still the same child he was before the diagnosis, as if you need reminding. The same is definitely true if they take the diagnosis away. He is still a child who can't stand to be dirty, who has a really hard time using both of his hands at the same time. He is still capable of massive meltdowns if his day veers off the schedule he expects.
Nearly two-and-a-half years ago, this was offered up as a possibility. I have often said how hard it was for me, a first-time mom who didn't know what typical looked like anyway, to believe that Sam was also on the same spectrum as his brother. It took awhile, but I got used to it. I assumed that some of Sam's quirkier behaviors were part and parcel of being on the spectrum. I practiced acceptance and tried to keep my patience in check when I forgot about his unique challenges, so different than John's.
His O.T. just told me a few weeks ago that he is the kind of kid who has the potential of falling through the cracks because he is so bright and looks so good in many ways. In fact, his IEP team is recommending our home school, regular kindergarten, with just some resource hours for next year. Will he sink or swim?
So yes, I am thrilled at the possibility, I know we are luckier than others. But I feel like putting on the brakes. Just a little.
But there's something even bigger. You mean the huge is not the return of some zzz's at night?
No, it's been brewing and it's so big I've only been able to take it out and look at it when I'm quiet and the house is asleep. Even then, I don't know what to make of it.
Our developmental pediatrician thinks Sam may be off the spectrum. As in, no more autism diagnosis. It's not yet official — she has ordered new neuropsych testing to see where both boys are now, but she thinks he'll test off of it. And as a good friend said, even if he doesn't test completely off of it, he is close enough to be questioned and that can only be a good thing, right?
Right? You'd think I'd be shouting from the rooftops, "We did it!" And don't get me wrong, I am thrilled at the possibility. It just hasn't sunk in. And in any event, if it's true, Sam did it. No miracle cures around here, just lots of speech therapy early on and some wonderful teachers in his special needs classrooms.
But then (and again, if this is true), what does that ultimately mean? They say to parents upon first hearing the news that their child is on the autism spectrum, He's still the same child he was before the diagnosis, as if you need reminding. The same is definitely true if they take the diagnosis away. He is still a child who can't stand to be dirty, who has a really hard time using both of his hands at the same time. He is still capable of massive meltdowns if his day veers off the schedule he expects.
Nearly two-and-a-half years ago, this was offered up as a possibility. I have often said how hard it was for me, a first-time mom who didn't know what typical looked like anyway, to believe that Sam was also on the same spectrum as his brother. It took awhile, but I got used to it. I assumed that some of Sam's quirkier behaviors were part and parcel of being on the spectrum. I practiced acceptance and tried to keep my patience in check when I forgot about his unique challenges, so different than John's.
His O.T. just told me a few weeks ago that he is the kind of kid who has the potential of falling through the cracks because he is so bright and looks so good in many ways. In fact, his IEP team is recommending our home school, regular kindergarten, with just some resource hours for next year. Will he sink or swim?
So yes, I am thrilled at the possibility, I know we are luckier than others. But I feel like putting on the brakes. Just a little.
April 8, 2009
The Tie Dye T-Shirt Project
I've not been posting much, but I do keep reading when I can. Awhile back, I was over at This Mom and found out about the Tie Dye T-Shirt project. Last May, a teacher asked her kindergarten class to go around the room and say what they didn't like about a fellow classmate, a little boy named Alex Barton who has autism. Then, unbelievably, she asked her class to vote on whether to ask him to leave, which they did. It's unimaginable to me how an educator could be so insensitive and so cruel. Who does that? Every child is special in his own right. Every child. Especially our children who face so many additional challenges.
Kyra and Fluffy reached out to Alex and his mom, Melissa, and between the two of them hatched the greatest of plans. What makes people smile? Color and lots of it. What if we had a chain of color stretching across our globe from one special child to another. What if we could actually wrap up our love and unity into a tangible thing and send it out into the world?
And so the Tie Dye Project was born. Alex and his mom made a batch of tie dye t-shirts and sent them out to other special kids around the country. The idea is that then those recipients make their own batch and send them to five additional children, and so on, and so on. We're excited to have gotten in at the ground level: two days ago, we received our special shirts from the awesome Kyra and Fluffy. They even sent an extra for Sam. (Thanks, Kyra!)
We have to keep this movement going. So... we're planning on breaking out the dye in the next week and would love to find homes for our creations. If you'd like to receive one of our five tie-dyes, numbered JS 1-5, please leave me a message or contact me at kal(dot)twins at gmail(dot)com. We'll need a snail-mail address and a t-shirt size.
Keep the love moving.
Kyra and Fluffy reached out to Alex and his mom, Melissa, and between the two of them hatched the greatest of plans. What makes people smile? Color and lots of it. What if we had a chain of color stretching across our globe from one special child to another. What if we could actually wrap up our love and unity into a tangible thing and send it out into the world?
And so the Tie Dye Project was born. Alex and his mom made a batch of tie dye t-shirts and sent them out to other special kids around the country. The idea is that then those recipients make their own batch and send them to five additional children, and so on, and so on. We're excited to have gotten in at the ground level: two days ago, we received our special shirts from the awesome Kyra and Fluffy. They even sent an extra for Sam. (Thanks, Kyra!)
We have to keep this movement going. So... we're planning on breaking out the dye in the next week and would love to find homes for our creations. If you'd like to receive one of our five tie-dyes, numbered JS 1-5, please leave me a message or contact me at kal(dot)twins at gmail(dot)com. We'll need a snail-mail address and a t-shirt size.
Keep the love moving.
April 7, 2009
Diving Back In
Why don't I just dive back in.
We've started going to a behavioral psychologist once a week to try and solve our ongoing sleep issues once and for all. A lot of common sense strategies that work a lot of the time, but not all of the time. When John is up from 11:30 p.m. to 5:30 a.m., for example, the sitting quietly in his room with my back facing him just doesn't cut it. He is up and shouting and laughing and yelling "HI!!" and no amount of silent putting-him-back-into his bed (50 times, 100 times) will work. His body clock is just not like mine or yours, he is UP! at the oddest hours. And to say that they are odd hours makes it sound quaint or cute. It is not cute, so I will amend that to say he is up at the most brutal hours.
The next night, he may only be up from 2 a.m. to 6 a.m. at which point I admit defeat and we get up to start the day.
And then there are the rare and delicious nights like last night. John left his bed at 2:50 a.m. I intercepted him in the hallway and silently walked him back and tucked him in. I took my post in the middle of the room, my back facing him, and after 20 minutes of nail-biting, heard the gentle sounds of him...sleeping. It is rare to find myself waking up alone at 7 a.m. and to not hear a peep.
Nevertheless, we are seeing a neurologist next week to rule out possible physical causes and to pursue medication. I cannot fathom giving a four-year-old something like risperdal, but it's been mentioned to me by more than one doctor.
In other news, John is talking so much these days. He is really finding ways to communicate. Yesterday, after a long rainy day indoors, he came to me and said "Mommy's car." When I asked him where he wanted to go in Mommy's car he said "Go to playground." He can tell me he's hungry ("Oatmeal!") and tired ("Sleep!") In the mornings when we're getting ready for school, he retrieves a picture strip and reads: "I ride. The Bus. To. School") Sometimes he repeats the last thing I say, an echo, but still — words are coming forth.
Last week his teacher called me, clearly excited. He is fascinated, she said, with the velcro-ed numbers on their class calendar and is always taking them off and hiding them around the room. That day she followed him and discovered that he only had the numbers 5, 10, 15, 20, 25 and 30. He's counting by fives.
And recently, amazingly, he drew a picture of many circles. When his teacher asked him what they were, he said "The planets," and then proceeded to "name" them. It hangs in a special place in our house.
We've started going to a behavioral psychologist once a week to try and solve our ongoing sleep issues once and for all. A lot of common sense strategies that work a lot of the time, but not all of the time. When John is up from 11:30 p.m. to 5:30 a.m., for example, the sitting quietly in his room with my back facing him just doesn't cut it. He is up and shouting and laughing and yelling "HI!!" and no amount of silent putting-him-back-into his bed (50 times, 100 times) will work. His body clock is just not like mine or yours, he is UP! at the oddest hours. And to say that they are odd hours makes it sound quaint or cute. It is not cute, so I will amend that to say he is up at the most brutal hours.
The next night, he may only be up from 2 a.m. to 6 a.m. at which point I admit defeat and we get up to start the day.
And then there are the rare and delicious nights like last night. John left his bed at 2:50 a.m. I intercepted him in the hallway and silently walked him back and tucked him in. I took my post in the middle of the room, my back facing him, and after 20 minutes of nail-biting, heard the gentle sounds of him...sleeping. It is rare to find myself waking up alone at 7 a.m. and to not hear a peep.
Nevertheless, we are seeing a neurologist next week to rule out possible physical causes and to pursue medication. I cannot fathom giving a four-year-old something like risperdal, but it's been mentioned to me by more than one doctor.
In other news, John is talking so much these days. He is really finding ways to communicate. Yesterday, after a long rainy day indoors, he came to me and said "Mommy's car." When I asked him where he wanted to go in Mommy's car he said "Go to playground." He can tell me he's hungry ("Oatmeal!") and tired ("Sleep!") In the mornings when we're getting ready for school, he retrieves a picture strip and reads: "I ride. The Bus. To. School") Sometimes he repeats the last thing I say, an echo, but still — words are coming forth.
Last week his teacher called me, clearly excited. He is fascinated, she said, with the velcro-ed numbers on their class calendar and is always taking them off and hiding them around the room. That day she followed him and discovered that he only had the numbers 5, 10, 15, 20, 25 and 30. He's counting by fives.
And recently, amazingly, he drew a picture of many circles. When his teacher asked him what they were, he said "The planets," and then proceeded to "name" them. It hangs in a special place in our house.
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