When I was a kid, summer was a magical time full of fireflies and fireworks, sandals and sunblock, that never lasted long enough. But as an adult, a teacher, the months between May and September were nothing more to me than much needed time to tweak lesson plans and prepare for new students. Later, as a stay-at-home mom of very young boys, summer days were suddenly too hot, the baby gear too cumbersome to lug around, the SPF too low, the backyard too full of bugs. I had become a summertime Scrooge.
But this summer with WINK and SMILE has been fabulous so far. WINK is just beginning to swim. SMILE is becoming more verbal and showing off his brand of brilliance. They're both losing baby teeth faster than the tooth-fairy can fly, and doing chores without being asked...at least some of the time. My little ones are growing up and, now, I am looking ahead a few months to a very ugly time indeed: September will bring with it full-day school for my "baby" SMILE. My sweet WINK will go back to calling me Mom instead of Mommy, maybe this time without being reminded, and it will break my heart even as I give him a thumbs up for remembering this important social cue.
So I'll soak up the sun rays as they bring out WINK's auburn highlights and SMILE's blond ones. I'll breath in the scent of chlorine that lingers on their skin as they fall asleep during story time. I'll chase fireflies, and I'll believe in magic. Because summertime doesn't last long enough.
Thursday, June 23, 2011
Wednesday, June 8, 2011
The Kindness of Strangers
It's so easy to forget that amid tantrums, sensory issues, and mounting anxiety (OCD), my boys want the same things other boys want. They want to play with peers at the park (some of the time), they want play dates, they want to be good at sports. They don't have age-appropriate autonomy or coordination yet but they are working on it. WINK has finally started to call me "Mom" when other kids are around. SMILE has learned to control his more violent tantrums when he hears my "teacher voice." WINK has learned to swing on his tummy when he wants to go on the park swings rather than struggle to climb into the seat by himself or- YIKES- ask me or a friend for help. SMILE is trying really hard to be okay with taking turns. So, they're getting there and socially failing less and less.
True, for every success, there has been a few cringe worthy stumbles, but they are still young, right? Maybe. It's still tempting to keep them home all the time, to just wipe out the need to subject them to social situations, though. Even if they don't see the stares they illicit from other people, I do. Even if they can't interpret what it means when kids move away from them during circle time, I can. And I want to protect them.
That's why yesterday was so important. I wanted to plan a little get together with some of WINK's school friends. I ran through several options: Roller skating? WINK won't leave the rug to go on the rink and the noise is too much for SMILE; Movie? Not enough interaction. Park? Too many opportunities for WINK to isolate himself; Do it at the house? Ummm....SMILE's house, SMILE's rules and, besides, WINK still plays with stuffed animals. Utterly discouraged and about to forget about the idea, I thought of bowling. Bowling? It will keep their attention. It's social without being overly so. Perfect. I asked WINK to choose three friends to invite. He chose five, but WHATEVER. I sent out five emails to the boys' families and waited. One of the two main boys answered right away. SCORE! But then...my in box remained empty. As the days went by, WINK continually asked about one boy in particular, the other main boy . He urged me to call the boy's parents. I said "no" because that wouldn't get him any cool points. Then, the day before we were set to go, the impossible happened. WINK. Called. A. FRIEND.
The day of the "event," WINK and I had lunch with the one firm reply we got (a very good friend) before heading to the bowling...what?...lanes. I was excited and a bit relieved that this would be a small get together. Still, I watched the clock to see if this boy WINK had called would show up. When 1:00 came and went, I let WINK and SMILE start a game while WINK's friend and sister played in the next lane. Then...it happened. WINK's other friend showed up! He was there. I was so excited I had to stop myself from hugging his father.
I prompted WINK subtly when his friends weren't looking. I told him when to cheer, give a high five, etc. Except for SMILE's full-force tantrum when the game ended and he hadn't gotten a spare or strike, it was a great day.
But it was made even better when I went up to the shoe-rental counter to ask a question and an older woman stopped me when she saw my "Autism Awareness" bracelet.
"My son is 43 and he has autism," she said.
I pointed to my boys and told her their diagnoses.
"I wanted to stop you and tell you," she continued, "that my son is 43, drives a car, has his own apartment, and works a 40 hour a week job. So...there's a lot of hope."
I thanked her, of course, and teared up a bit. "I do worry," I started.
"Of course you do."
True, for every success, there has been a few cringe worthy stumbles, but they are still young, right? Maybe. It's still tempting to keep them home all the time, to just wipe out the need to subject them to social situations, though. Even if they don't see the stares they illicit from other people, I do. Even if they can't interpret what it means when kids move away from them during circle time, I can. And I want to protect them.
That's why yesterday was so important. I wanted to plan a little get together with some of WINK's school friends. I ran through several options: Roller skating? WINK won't leave the rug to go on the rink and the noise is too much for SMILE; Movie? Not enough interaction. Park? Too many opportunities for WINK to isolate himself; Do it at the house? Ummm....SMILE's house, SMILE's rules and, besides, WINK still plays with stuffed animals. Utterly discouraged and about to forget about the idea, I thought of bowling. Bowling? It will keep their attention. It's social without being overly so. Perfect. I asked WINK to choose three friends to invite. He chose five, but WHATEVER. I sent out five emails to the boys' families and waited. One of the two main boys answered right away. SCORE! But then...my in box remained empty. As the days went by, WINK continually asked about one boy in particular, the other main boy . He urged me to call the boy's parents. I said "no" because that wouldn't get him any cool points. Then, the day before we were set to go, the impossible happened. WINK. Called. A. FRIEND.
The day of the "event," WINK and I had lunch with the one firm reply we got (a very good friend) before heading to the bowling...what?...lanes. I was excited and a bit relieved that this would be a small get together. Still, I watched the clock to see if this boy WINK had called would show up. When 1:00 came and went, I let WINK and SMILE start a game while WINK's friend and sister played in the next lane. Then...it happened. WINK's other friend showed up! He was there. I was so excited I had to stop myself from hugging his father.
I prompted WINK subtly when his friends weren't looking. I told him when to cheer, give a high five, etc. Except for SMILE's full-force tantrum when the game ended and he hadn't gotten a spare or strike, it was a great day.
But it was made even better when I went up to the shoe-rental counter to ask a question and an older woman stopped me when she saw my "Autism Awareness" bracelet.
"My son is 43 and he has autism," she said.
I pointed to my boys and told her their diagnoses.
"I wanted to stop you and tell you," she continued, "that my son is 43, drives a car, has his own apartment, and works a 40 hour a week job. So...there's a lot of hope."
I thanked her, of course, and teared up a bit. "I do worry," I started.
"Of course you do."
Thursday, June 2, 2011
Sometimes you win some...
I have often struggled with finding my place alongside the professionals in my boys' lives. It's not so bad when I take them to physical therapy or speech. Sure, I feel a bit squirmy inside when I really think about the progress these therapists have made with my children. It hurts my pride that I wasn't the one to help them. But I can sit in the waiting room while they work their magic and it's no different than bringing them to a doctor's office. Or so I tell myself.
But working with even the most sensitive and compassionate behavioral specialists (TSSes and BSCs) feels like an invasion of privacy because their "office" is my home. SMILE's primary TSS is a soft-spoken mother type. In fact, she has grown children. I like her very much and so does SMILE. So much in fact, SMILE recently slipped when addressing her and called her "Mommy." I know it was just a slip. SMILE often calls me "Daddy" before correcting himself. But...wow...that one hurt.
So, maybe my excitement and sense of accomplishment over SMILE's most recent meltdown are understandable. I was chatting with Ms. TSS while SMILE finished his lunch and I mentioned the kindergarten graduation concert that's scheduled for tomorrow morning. Suddenly, SMILE burst into tears and announced that he hated the concert and was afraid to go on stage. I was floored. SMILE and his class have been practicing every day this week. Just yesterday, SMILE was excited to tell me about where he was standing on stage. My little guy escalated FAST and was in a full screaming, pushing, sobbing fit. I tried talking to him while Ms. TSS quickly doodled a sketch of children on a stage and parents applauding. Darn, I thought. Why didn't I think of that? But SMILE went on wailing, calling the concert stupid, insisting he hated it, and that he would miss me too much to do it. I sat there helplessly while SMILE ranted and shot down every attempt Ms. TSS and I made to reason with him. We figured out he might not like the word "concert" so we stopped using it and reinforced that he's just going to do the same thing he did today, yesterday, and the day before. We tried to temp him with the promise of the refreshments the school was putting out for the graduates and their families. Nothing worked. He pulled on the lanyard around my neck, covered my mouth while I talked, and twisted my fingers. I caught Ms. TSS's eye and pulled SMILE onto my lap before she could intervene.
And then he said it. That one comment I waited for without knowing previously what it would be. It would be the key to reaching him, distracting him, and ending the chaos.
He wailed, "But I thought it was next time."
"What does 'next time' mean, SMILE?" My mind raced to chase this thought down any track he was going down.
He took the drama down a notch and was quiet before answering. "It means 'a long time.'"
"You thought the concert would be a long time from now?"
"Yes," he whined. His little lip trembled and I gave him a hug.
"Oh," I smiled. "It is a long time. It's not today." I turned him in my arms so he could look at me if he wanted to. And it breaks my heart because he does look me in the eyes when we find ourselves in these situations. It's as if he's trusting that I will know what to say to help him and he really wants to hear it. "It's not this morning. It's not lunch time or this afternoon. It's not snack time. It's not dinner time. It's not story time. It's not even bed time. There's a lot of time before singing. And tomorrow, you'll go to school, sing on stage, and then have snacks. Do you think they'll have coffee for me?"
"Well," he said, his voice clear and calm, "We'll have to see about that."
"Yes, we'll have to see," I said before releasing him so he could go on to one of Ms. TSS's activities.
I hate when SMILE tantrums. Sure, I don't like the noise, but that's not it. I've tried to articulate it before but I think I can now after this experience because a TSS was here to see it this time. When SMILE really tantrums, he gets lost. My sweet, accommodating, loving little boy sinks below his autism and he can't control himself. And, for once, the TSS's knowledge of the right thing to do doesn't work because she's not following her heart. But I am. And that's why I'm not going to struggle to find my place any more. Because I'm the one that found SMILE today.
But working with even the most sensitive and compassionate behavioral specialists (TSSes and BSCs) feels like an invasion of privacy because their "office" is my home. SMILE's primary TSS is a soft-spoken mother type. In fact, she has grown children. I like her very much and so does SMILE. So much in fact, SMILE recently slipped when addressing her and called her "Mommy." I know it was just a slip. SMILE often calls me "Daddy" before correcting himself. But...wow...that one hurt.
So, maybe my excitement and sense of accomplishment over SMILE's most recent meltdown are understandable. I was chatting with Ms. TSS while SMILE finished his lunch and I mentioned the kindergarten graduation concert that's scheduled for tomorrow morning. Suddenly, SMILE burst into tears and announced that he hated the concert and was afraid to go on stage. I was floored. SMILE and his class have been practicing every day this week. Just yesterday, SMILE was excited to tell me about where he was standing on stage. My little guy escalated FAST and was in a full screaming, pushing, sobbing fit. I tried talking to him while Ms. TSS quickly doodled a sketch of children on a stage and parents applauding. Darn, I thought. Why didn't I think of that? But SMILE went on wailing, calling the concert stupid, insisting he hated it, and that he would miss me too much to do it. I sat there helplessly while SMILE ranted and shot down every attempt Ms. TSS and I made to reason with him. We figured out he might not like the word "concert" so we stopped using it and reinforced that he's just going to do the same thing he did today, yesterday, and the day before. We tried to temp him with the promise of the refreshments the school was putting out for the graduates and their families. Nothing worked. He pulled on the lanyard around my neck, covered my mouth while I talked, and twisted my fingers. I caught Ms. TSS's eye and pulled SMILE onto my lap before she could intervene.
And then he said it. That one comment I waited for without knowing previously what it would be. It would be the key to reaching him, distracting him, and ending the chaos.
He wailed, "But I thought it was next time."
"What does 'next time' mean, SMILE?" My mind raced to chase this thought down any track he was going down.
He took the drama down a notch and was quiet before answering. "It means 'a long time.'"
"You thought the concert would be a long time from now?"
"Yes," he whined. His little lip trembled and I gave him a hug.
"Oh," I smiled. "It is a long time. It's not today." I turned him in my arms so he could look at me if he wanted to. And it breaks my heart because he does look me in the eyes when we find ourselves in these situations. It's as if he's trusting that I will know what to say to help him and he really wants to hear it. "It's not this morning. It's not lunch time or this afternoon. It's not snack time. It's not dinner time. It's not story time. It's not even bed time. There's a lot of time before singing. And tomorrow, you'll go to school, sing on stage, and then have snacks. Do you think they'll have coffee for me?"
"Well," he said, his voice clear and calm, "We'll have to see about that."
"Yes, we'll have to see," I said before releasing him so he could go on to one of Ms. TSS's activities.
I hate when SMILE tantrums. Sure, I don't like the noise, but that's not it. I've tried to articulate it before but I think I can now after this experience because a TSS was here to see it this time. When SMILE really tantrums, he gets lost. My sweet, accommodating, loving little boy sinks below his autism and he can't control himself. And, for once, the TSS's knowledge of the right thing to do doesn't work because she's not following her heart. But I am. And that's why I'm not going to struggle to find my place any more. Because I'm the one that found SMILE today.
Wednesday, June 1, 2011
Hypnosis Confusion
Sometimes I have to laugh. WINK's anxiety waxes and wanes and, right now, we are in high tide territory, indeed. Our night-time routine consists of three stories, tickles, 110 kisses, and at least one question ("Do I feed my fish tonight?") asked three different ways. Very often, DAD and I will send the little tyke to bed only to hear a knock on our door a few minutes later. Why? So he can ask the same question again, or make sure he did, in fact, get 26 kisses from DAD. Or maybe he will just have a string of questions he needs to get out or a series of statements he has to say. Needless to say, WINK is a tired little boy in the morning because it takes so long for him to turn the volume down in his brain.
A good friend just recommended a simple hypnosis technique to me. She instructed me to give WINK a small ball to hold in his hand and have him toss it to the other hand, back and forth. The idea is that the activity stimulates both sides of the brain and, therefore, reduces anxiety. GREAT! I rushed home, gave him a ball, and waited for the magic to happen.
Well, he liked the ball. And he did seem less anxious. He went to bed smiling, in fact. Unfortunately, he didn't go to bed before asking me every question he could think of about the ball's color, construction, physics, environmental science, the origin of myth, the secret of life, on and on. Really, I'm only exaggerating slightly.
WINK just poked his head in my room. "Mommy, I just realized I didn't tell you good night." (YES HE DID!!!!!!)
"Good night, WINK."
"I love you." (Yep, we covered that, too).
"I love you, too"
"I wanted to see if you were still working." (Yes, he's still going...)
"Yes, honey. I'm still working."
"Well, you don't have to tell me that because my eyes already told me." (@#^&#%!)
"Goodnight, sweetheart."
"Goodnight. I love you.... (Yeah...this goes on for a bit....)
I will have him try the ball trick again soon. As soon as I'm ready to relinquish the ball.
A good friend just recommended a simple hypnosis technique to me. She instructed me to give WINK a small ball to hold in his hand and have him toss it to the other hand, back and forth. The idea is that the activity stimulates both sides of the brain and, therefore, reduces anxiety. GREAT! I rushed home, gave him a ball, and waited for the magic to happen.
Well, he liked the ball. And he did seem less anxious. He went to bed smiling, in fact. Unfortunately, he didn't go to bed before asking me every question he could think of about the ball's color, construction, physics, environmental science, the origin of myth, the secret of life, on and on. Really, I'm only exaggerating slightly.
WINK just poked his head in my room. "Mommy, I just realized I didn't tell you good night." (YES HE DID!!!!!!)
"Good night, WINK."
"I love you." (Yep, we covered that, too).
"I love you, too"
"I wanted to see if you were still working." (Yes, he's still going...)
"Yes, honey. I'm still working."
"Well, you don't have to tell me that because my eyes already told me." (@#^&#%!)
"Goodnight, sweetheart."
"Goodnight. I love you.... (Yeah...this goes on for a bit....)
I will have him try the ball trick again soon. As soon as I'm ready to relinquish the ball.
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