I realize that in almost a year of blogging, I have barely mentioned the other half of this parenting team. My husband, Greg, and I were college sweethearts. While friends of mine were falling for the cool guys who never called them back, I fell for the quiet guy with the amazing black curly hair. What set Greg apart was his kindness and open heart. His goofiness wasn't for everyone, but I thought it was endearing and felt good about myself for realizing what a fabulous little nerd he was.
Well, after over 10 years of marriage, he's still no closer to being the suave guy or the man's man. But...he's a real man. He's loving, affectionate, and above all, he's accepting of his sons' obstacles. It's surprising how many dads aren't. These other men love their children, I'm sure, but many spectrum dads take longer to come out of the denial stage. Greg jumped in the boat fairly quickly, however. At play dates and parties, Greg is running around with the boys trying to orchestrate games that the other kids will want to play. He is often at the bottom of a kiddie pile-on or trudging across the lawn with any number of children trying to tackle him. But he takes it in stride because it just might help his sons feel like one of the gang.
His type B- personality is the perfect foil to my type A+. He is strong for me when I'm tired and supportive of my every move. His goofiness often brings laughter to our table and lightens our heavy load. But...my Greg is eccentric, too.
He's always been an emotional chameleon, losing weight when I'm on a diet, getting morning sickness when I was pregnant. The other night, I was talking to him about all of the tics I had observed SMILE do that day. And then...he ticed. Right in front of me, he did a little head jerk identical to SMILE's most prominent tic. I was hysterical. Now, apparently, he has Tourette's. I told him he needs to stop, that the tic disorder card has been taken off the table, and SMILE's the only one who gets to do it.
But I love him so much and the boys want to grow up to be just like him. Which would be fine with me.
Monday, September 26, 2011
Monday, September 19, 2011
Shaking things up
I'm pretty sure SMILE has a tic disorder. It's much too early to say it's Tourette Syndrome, it takes 6-12 months of observation to get that diagnosis, but I know what I see. SMILE's quirky movements from the summer, a lot of hand waving in front of his face, have morphed into head jerks, neck twists, shoulder shrugs, and grimaces. He also makes little grunting sounds, although he's done that for years. At first, I thought he was stimming, and the hand waving could still have been a stim, but the rest is too pervasive and unpleasant in my opinion to be based on anxiety or a need to stimulate or calm himself.
Look at it this way. Most people stim from time to time. Right now, I'm sitting here with my legs crossed and I'm waving my top leg without thinking about it. It's soothing. Ever since I first held a microphone at my grandparents' 50th wedding anniversary, I've discreetly cleared my throat before speaking publicly. It's just what I do. Other people twist their hair, smell their hands (or whatever is soapy), hum a mantra, or do any number of things to calm- or energize- themselves. But they are pleasant, at least to the person doing them, and within the person's control. There's no way possible that SMILE enjoys some of what I see happening. The neck twists and grimaces alone interrupt him while he answers questions or tells a story sometimes. The shoulder shrugs have hit during games at home, and we've had to pause until they've passed. Much of the time, SMILE is neither stressed nor lacking in stimulation when his body "gets flappy" (as he puts it). To me, this all means he's having tics. Add to this the facts that SMILE is just about the right age for symptoms to start (it's 7), it's a common co-morbid issue for spectrum kids, and it's linked to OCD, and I'm pretty certain a diagnosis is in our futures.
I've done some preliminary research on line and I've spoken to his developmental pediatrician. So far, it seems like my only three options for SMILE are: 1) Pray he outgrows this as he gets older (some children do); 2) Medicate him; 3) Do both. I'm not crazy about any of them. I'm all for praying, but not as a form of treatment. I hate seeing SMILE's little body and face contort. I'm afraid that he'll be a bigger target for bullying. But, medicate him? I'm not ready. I don't think there's such a thing as a medication that is side-effect free, or one that will work on any body chemistry. Most parents I've spoken to talk about a trial and error period that was horrible to go through because it caused all sorts of problems (depression, rages, weight gain, more tics, anxiety, etc) until they found the right drug or dosage. My little SMILE has gone through so much already. He's fought so hard in the past year to learn better behavior and to regulate himself, that I can't stand the idea of putting something in his system that can throw him so out of whack.
Is medication necessary in some cases? No doubt, in my opinion. A child who can't function or sleep because of his high anxiety, a child who is miserable because of his condition, a child whose present symptoms are more severe or dangerous than the side effects of medication, should probably have medication. But the purpose is to calm or eliminate symptoms of a disease. But what if there is no dis-ease ("dis" means "without")? What if SMILE isn't bothered by his tics? They don't hurt him. They're not dangerous to him or anyone else. He doesn't seem anxious, reserved, or depressed about them. They're not interfering with school. As a matter of fact, I think he's delighted by his tics and the possibility that, some day, they might get him out of trouble (he's tried with me-but no such luck).
So, unless his tics become a problem for him- physically or emotionally- or others are put at risk by his tics, I think I'll take my little SMILE the way he is. No matter how shaken or stirred it makes me.
Look at it this way. Most people stim from time to time. Right now, I'm sitting here with my legs crossed and I'm waving my top leg without thinking about it. It's soothing. Ever since I first held a microphone at my grandparents' 50th wedding anniversary, I've discreetly cleared my throat before speaking publicly. It's just what I do. Other people twist their hair, smell their hands (or whatever is soapy), hum a mantra, or do any number of things to calm- or energize- themselves. But they are pleasant, at least to the person doing them, and within the person's control. There's no way possible that SMILE enjoys some of what I see happening. The neck twists and grimaces alone interrupt him while he answers questions or tells a story sometimes. The shoulder shrugs have hit during games at home, and we've had to pause until they've passed. Much of the time, SMILE is neither stressed nor lacking in stimulation when his body "gets flappy" (as he puts it). To me, this all means he's having tics. Add to this the facts that SMILE is just about the right age for symptoms to start (it's 7), it's a common co-morbid issue for spectrum kids, and it's linked to OCD, and I'm pretty certain a diagnosis is in our futures.
I've done some preliminary research on line and I've spoken to his developmental pediatrician. So far, it seems like my only three options for SMILE are: 1) Pray he outgrows this as he gets older (some children do); 2) Medicate him; 3) Do both. I'm not crazy about any of them. I'm all for praying, but not as a form of treatment. I hate seeing SMILE's little body and face contort. I'm afraid that he'll be a bigger target for bullying. But, medicate him? I'm not ready. I don't think there's such a thing as a medication that is side-effect free, or one that will work on any body chemistry. Most parents I've spoken to talk about a trial and error period that was horrible to go through because it caused all sorts of problems (depression, rages, weight gain, more tics, anxiety, etc) until they found the right drug or dosage. My little SMILE has gone through so much already. He's fought so hard in the past year to learn better behavior and to regulate himself, that I can't stand the idea of putting something in his system that can throw him so out of whack.
Is medication necessary in some cases? No doubt, in my opinion. A child who can't function or sleep because of his high anxiety, a child who is miserable because of his condition, a child whose present symptoms are more severe or dangerous than the side effects of medication, should probably have medication. But the purpose is to calm or eliminate symptoms of a disease. But what if there is no dis-ease ("dis" means "without")? What if SMILE isn't bothered by his tics? They don't hurt him. They're not dangerous to him or anyone else. He doesn't seem anxious, reserved, or depressed about them. They're not interfering with school. As a matter of fact, I think he's delighted by his tics and the possibility that, some day, they might get him out of trouble (he's tried with me-but no such luck).
So, unless his tics become a problem for him- physically or emotionally- or others are put at risk by his tics, I think I'll take my little SMILE the way he is. No matter how shaken or stirred it makes me.
Sunday, September 11, 2011
That's my boy...
WINK picked a dandelion this morning and presented it to me as a gift. Then he asked why I had tried to stop him from picking it. I didn't want to say it was because we were in a hurry to get to church, so I said I like flowers to grow where they belong (although I loved my gift). His response? "Well, I wanted to pick it for two reasons: First, because I love you. Second, because it's a weed and plants can't grow where weeds are. So, actually, I did a good thing for the world."
Tuesday, September 6, 2011
From WINK's Point of View
WINK's TSS introduced a new activity today. She held up a card for him to look at and asked him to describe the child in the picture.
"Pretend this is your friend and you want to describe her to me so I can find her in a group of kids. How would you describe her?"
WINK studied the picture and said, "She's the one with the big smile."
"Okay," the TSS said. "What else would you say?"
"Ummm...she has beautiful eyes and she's nice."
I couldn't see the card she was holding up, but I could tell that the TSS was struggling to get to a point that evaded WINK.
"What is something you see that you wouldn't say about the girl in the picture?" Long pause. "It's okay, WINK, you can see that she looks different. You can say it."
"Sometimes...she's not happy and doesn't smile."
What is this girl showing my son? I walked across the room to stand behind WINK's shoulder so I could see the picture in WINK's hand.
My mouth hung open as I sighed and rested my hand on my little man's shoulder. The picture was of a little girl with a big smile and beautiful eyes. The fact that she had Down's Syndrome was unremarkable and unimportant to my son. In WINK's eyes, the little girl was just pretty and nice.
The TSS moved on to another card. This time, WINK noted that the child had brown hair like his and wore a purple dress with snowflakes on it. Again, the TSS pressed him to say what he sees but knows he shouldn't say. I looked at the card. The girl in the picture was overweight.
The TSS commented on how great it was that WINK knew not to say anything about the children's differences. After my WINK moved away, I corrected Ms. TSS: My WINK didn't think they were important.
"Pretend this is your friend and you want to describe her to me so I can find her in a group of kids. How would you describe her?"
WINK studied the picture and said, "She's the one with the big smile."
"Okay," the TSS said. "What else would you say?"
"Ummm...she has beautiful eyes and she's nice."
I couldn't see the card she was holding up, but I could tell that the TSS was struggling to get to a point that evaded WINK.
"What is something you see that you wouldn't say about the girl in the picture?" Long pause. "It's okay, WINK, you can see that she looks different. You can say it."
"Sometimes...she's not happy and doesn't smile."
What is this girl showing my son? I walked across the room to stand behind WINK's shoulder so I could see the picture in WINK's hand.
My mouth hung open as I sighed and rested my hand on my little man's shoulder. The picture was of a little girl with a big smile and beautiful eyes. The fact that she had Down's Syndrome was unremarkable and unimportant to my son. In WINK's eyes, the little girl was just pretty and nice.
The TSS moved on to another card. This time, WINK noted that the child had brown hair like his and wore a purple dress with snowflakes on it. Again, the TSS pressed him to say what he sees but knows he shouldn't say. I looked at the card. The girl in the picture was overweight.
The TSS commented on how great it was that WINK knew not to say anything about the children's differences. After my WINK moved away, I corrected Ms. TSS: My WINK didn't think they were important.
Sunday, September 4, 2011
My 'I Love' List
I tell my boys that I am proud of them every day. While their peers are doing kid stuff after school- music, dance, karate- my boys are facing one form of therapy or another. My WINK has six therapy hours a week. SMILE has seven (down from last year's eleven hour prescription). They try so hard in everything they do, they don't give up, and they keep smiling through most of it week after week.
But even though I am proud every day, some days are just really spectacular...
After days of anticipation, WINK donned his shin guards today to take the field for his first ever soccer game. He stood in the middle of the field, the smallest and skinniest boy out there, and mostly looked at the coach as he addressed the team. He learned to dribble the ball (short kicks from one foot to the other), maneuver through obstacle courses, and "shoot" to make a goal.
When it was game time, WINK was neither the fastest nor the most coordinated. But he sure had a lot of heart. He followed that ball from one end of the field to the other and back again. When the ball rebounded off someone else and landed near him, he connected with the ball. Sure, he was running several feet behind the other players, but he never gave up. The first time he played defense, he defended his spot of grass a bit too vehemently (he wouldn't budge from his space). The second time, after I told him he needs to go after the ball even if it doesn't come right to him, he covered the whole field valiantly. But the third time, he did it just right. He came off the field glowing with pride and launched himself into DAD's arms. I hugged him tight and told him he had done a great job. I asked him if he had fun and he said, beaming, that soccer is awesome.
At the end of the game, SMILE told WINK that he could play the Wii for an extra, extra, extra long time when we got home. When DAD asked him why he was giving WINK this high honor, SMILE said, "Because I love watching him play the Wii and I love seeing him play soccer." Two hours later, after a celebratory dinner at Wendy's and a trip to a local ice cream parlor, we were finally home. Once again, SMILE made his generous offer. When DAD asked why he wanted WINK to play, SMILE said, "Because WINK is on my 'I love' list. I keep it in my heart."
Wow! I'm starting to see the magnitude of SMILE's personality. His autism and probable tic disorder is more and more visible every day, even to me. It's there in how he walks, tilts his head, and screws up his face. It's there in how he still confuses his pronouns, sometimes answers the wrong "w" question, and stops and starts his sentences because his mouth and brain are moving at different speeds. But...he's poetic!
When Dad and I turned to WINK and asked if he'd had a good day, our little sage thought a minute and replied, "More than you think..."
Hmm. How do they do that? How do both of my boys manage to say so much in so few words? I came upon a phrase the other day that I immediately thought summed up WINK's talent: "Spiritual giftedness." But...I think that's my little SMILE, too. The prediction I made a few weeks ago, that their level of comfort in the water is only the first indication that they will surpass me, seems to be coming true very quickly. So, instead of clumsily stringing together sentiment, I'll leave it to the experts. "WINK and SMILE, you are on my 'I love' list that I keep in my heart...more than you think.'"
But even though I am proud every day, some days are just really spectacular...
After days of anticipation, WINK donned his shin guards today to take the field for his first ever soccer game. He stood in the middle of the field, the smallest and skinniest boy out there, and mostly looked at the coach as he addressed the team. He learned to dribble the ball (short kicks from one foot to the other), maneuver through obstacle courses, and "shoot" to make a goal.
When it was game time, WINK was neither the fastest nor the most coordinated. But he sure had a lot of heart. He followed that ball from one end of the field to the other and back again. When the ball rebounded off someone else and landed near him, he connected with the ball. Sure, he was running several feet behind the other players, but he never gave up. The first time he played defense, he defended his spot of grass a bit too vehemently (he wouldn't budge from his space). The second time, after I told him he needs to go after the ball even if it doesn't come right to him, he covered the whole field valiantly. But the third time, he did it just right. He came off the field glowing with pride and launched himself into DAD's arms. I hugged him tight and told him he had done a great job. I asked him if he had fun and he said, beaming, that soccer is awesome.
At the end of the game, SMILE told WINK that he could play the Wii for an extra, extra, extra long time when we got home. When DAD asked him why he was giving WINK this high honor, SMILE said, "Because I love watching him play the Wii and I love seeing him play soccer." Two hours later, after a celebratory dinner at Wendy's and a trip to a local ice cream parlor, we were finally home. Once again, SMILE made his generous offer. When DAD asked why he wanted WINK to play, SMILE said, "Because WINK is on my 'I love' list. I keep it in my heart."
Wow! I'm starting to see the magnitude of SMILE's personality. His autism and probable tic disorder is more and more visible every day, even to me. It's there in how he walks, tilts his head, and screws up his face. It's there in how he still confuses his pronouns, sometimes answers the wrong "w" question, and stops and starts his sentences because his mouth and brain are moving at different speeds. But...he's poetic!
When Dad and I turned to WINK and asked if he'd had a good day, our little sage thought a minute and replied, "More than you think..."
Hmm. How do they do that? How do both of my boys manage to say so much in so few words? I came upon a phrase the other day that I immediately thought summed up WINK's talent: "Spiritual giftedness." But...I think that's my little SMILE, too. The prediction I made a few weeks ago, that their level of comfort in the water is only the first indication that they will surpass me, seems to be coming true very quickly. So, instead of clumsily stringing together sentiment, I'll leave it to the experts. "WINK and SMILE, you are on my 'I love' list that I keep in my heart...more than you think.'"
Saturday, September 3, 2011
Stepping back...maybe
DAD and I spent days prepping WINK and building up his "social story" rolodex. What to say if:
- he needs to go to the bathroom
- he isn't called on by his teacher and someone takes "his" answer
- someone gives a wrong answer to a teacher's question
- he isn't getting a turn/ wants a turn
- wants to play with someone
- wants to join in a game
But our concern has been focused on the 20 minutes a day WINK spends on the recess yard. We prepped him to go over to one boy in particular, someone he knows from last year, and ask him. After the first day, WINK said he tried to get his attention, but he didn't answer. Hmm. We suggested that he could ask this boy if he wants to play tag before their class goes to lunch so there would be fewer distractions. After assuring WINK that he could, in fact, talk sometimes in class, he agreed that he could try that. But not on the second day, apparently. He was too nervous. I pointed out that he would get left out of stuff if he didn't ask to join in. But, the third day was the charm. WINK walked over to his friend before lunch and asked him if he wanted to play tag with him. And...his friend said "no."
Damn it! I thought. Why couldn't this kid see WINK's sweetness instead of his awkwardness and just say 'yes'? Why didn't he understand what a huge step it was for WINK to ask to play? Of course, I know it's because he's a kid. Of course. But still... I gathered my nerves and calmly pointed out that this little boy may not have wanted to play tag. I asked WINK how he felt. He said, "still happy," and I pray that was the truth.
But lesson learned. I have to butt out sometimes. I have to let my WINK go at his own pace. On the fourth day of school, I dropped WINK off at the point where his class lines up every morning. I whispered that I'm proud of him, and walked away to talk to his teacher. I alternated between badly wanting to trip the kid that had upset my son and wanting to set up an elaborate play date to space camp to win his loyalty. Of course, I didn't do either.
Good thing, too. On the fourth day, they played basketball at recess.
- he needs to go to the bathroom
- he isn't called on by his teacher and someone takes "his" answer
- someone gives a wrong answer to a teacher's question
- he isn't getting a turn/ wants a turn
- wants to play with someone
- wants to join in a game
But our concern has been focused on the 20 minutes a day WINK spends on the recess yard. We prepped him to go over to one boy in particular, someone he knows from last year, and ask him. After the first day, WINK said he tried to get his attention, but he didn't answer. Hmm. We suggested that he could ask this boy if he wants to play tag before their class goes to lunch so there would be fewer distractions. After assuring WINK that he could, in fact, talk sometimes in class, he agreed that he could try that. But not on the second day, apparently. He was too nervous. I pointed out that he would get left out of stuff if he didn't ask to join in. But, the third day was the charm. WINK walked over to his friend before lunch and asked him if he wanted to play tag with him. And...his friend said "no."
Damn it! I thought. Why couldn't this kid see WINK's sweetness instead of his awkwardness and just say 'yes'? Why didn't he understand what a huge step it was for WINK to ask to play? Of course, I know it's because he's a kid. Of course. But still... I gathered my nerves and calmly pointed out that this little boy may not have wanted to play tag. I asked WINK how he felt. He said, "still happy," and I pray that was the truth.
But lesson learned. I have to butt out sometimes. I have to let my WINK go at his own pace. On the fourth day of school, I dropped WINK off at the point where his class lines up every morning. I whispered that I'm proud of him, and walked away to talk to his teacher. I alternated between badly wanting to trip the kid that had upset my son and wanting to set up an elaborate play date to space camp to win his loyalty. Of course, I didn't do either.
Good thing, too. On the fourth day, they played basketball at recess.
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